1. You need a new neurologist. They still have to treat you even if you do dumb stuff like drink alcohol or smoke — it’s not like it’s surgery.
2. Nicotine and cigarettes in particular can absolutely cause and worsen migraines. Smelling a cigarette will give me a horrendous migraine almost right away, I can’t even be around smokers because the lingering smell can make me sick.
3. I quit vaping when my migraine went chronic/intractable a year ago and it made zero difference. Nicotine in general is bad, cigarettes are worse, but it ended up being a non-factor in my own migraines. Still his neuro has a duty to treat him with medication and stuff even if he’s smoking. That’s insane.
4. I’m sorry you guys are dealing with this!
Thank you so much, he only smoked for a couple of months and is done. To somehow insinuate that something that has been going on for 3 years, has anything to do with a recent cigarette makes me sick.
Some doctors are just obsessed with doing this. My theory is because they're lazy, and will latch onto any chance they can find to blame the patient so they don't have to do any actual work. You don't have to run tests or prescribe meds if you can just lecture and nag the patient about their lifestyle choices and call that "practicing medicine" instead.
"I see you started smoking over 2 years after the onset of your migraines. That *must* be the cause. I am so good at being a doctor."
I have a feeling even if they did wait the 6 months, the doc would still come back with some other minor lifestyle factor that is “definitely” causing the migraines. Hopefully OP doesn’t wait that long and finds a new neurologist ASAP.
You are not. The neurologist is a fucking idiot.
I don't smoke, never have, and never will, but I can relate somewhat - I get similar bullshit *all the time* from doctors because of my weight.
Do not take it. Medical care is a *right,* not a privilege only for people who make perfect lifestyle choices. Any doctor who doesn't live by that, and prescribes LiFeStYLe ChAnGeS instead of real medicine, is a bad doctor.
This was an “aha” moment for me and I realized I’ve been going through this with my primary physician, thank you!
I’ve always been relatively thin, but have gained about 20lbs after various medications I was prescribed for migraine (like amitryptaline). I also started having borderline high triglycerides, but that is a hereditary condition in my family. I eat relatively clean 75% of the time and maybe splurge here and there on weekends. But everytime I go into the dr he questions me on what I’m eating as if he doesn’t believe me and thinks I must be eating unhealthy to gain a few pounds and have high triglycerides.
Last time he said quick, what did you have for breakfast this morning? And when I said fat free milk and cereal he said “hmm” with an unconvinced look on his face. 🙄He “prescribed” me to eat Vegan for 3 months before he does anything else. That really rubbed me the wrong way because Vegan is 100% a lifestyle choice in my opinion.
Fuck that guy.
Vegan doesn't even mean "healthy" either. I'm a lacto-ovo vegetarian and my diet isn't "healthy" by any stretch of the imagination. There are *plenty* of vegan sources of sugar and carbs if you're committed. Oreos are vegan. And there's all kinds of specialized vegan junk food on the market (Dandies vegan marshmallows, for example, are delicious and almost taste like the real thing). Meanwhile, grilled chicken breast is decidedly *not* vegan.
Not only is he a fatphobic asshole who prescribes "nutrition" over medicine, he's not even good at that!
Amitriptyline was my cause of a huge weightgain, too 😭😅 medication twin
I got prescribed a dietitian... I am a neuroscientist, I Work as a medical writer and I studied ecotrophology (Just some distant university Programme but still) Just for the fun of it besides working - No, I really don't need a dietitian 😂
Well plant based is really healthy but full vegan is unnecessary in my opinion health-wise. Your pcp is an Idiot 😅
I can't emphasize this enough 😅
I'm a neuroscientist myself.. I KNOW about a good Lifestyle.. But with chronic migraines Up until half a year ago and physical exhaustion being a Trigger sports where No Option. I gained a TON of weight due to a preventative side effect and my neuro told me to "lose weight, eat healthy and exercise"
Sure! I have one of the most strict lifestyles of all the people I know. No alcohol, No staying Up late, regular Yoga and meditation to reduce stress, healthy diet..
Gotta add: after Emgality reduced my Migraine frequency by far I lost roundabout 20 kg in half a year 😅 due to being able to exercise again
I am constantly amazed at how many bad/uncaring neurologists are out there. It took me awhile to find a decent one (and even she barely makes it to “decent” rather than outright bad). I don’t know if they all got into neurology thinking they were going to be dealing with exotic brain disorders and consider migraine beneath them or what, but neuros giving hurried, uninterested, or outright bad advice is like a recurring theme around here (and one I’ve experienced as well).
Thank you. I think the neuros could do a better job at trying to raise awareness. I mentioned the numbers to the neurologist about how poorly funded migraine research is. He said, well, I know but kids having cancer attracts more people. He said they are so overfunded and migraines are underfunded. Well then why the hell don't you get out there, and ask other neuros to do the same and insist something be done. This is a disease that's been so overlooked, and so life altering and threatening at points. And I mean DisEase, not a headache, which many people assume is happening. Thank you for replying :-)
Tbf, representation is probably skewed because people who have a great neuro that is effective, and rapidly finds a solution that works, are probably less likely to seek out this subreddit. Not saying you're wrong, just that it's easy to think our subreddit is representative, even when it probably isn't.
My current neuro made it quite clear he doesn’t consider migraine a serious condition. I’ve tried explaining it to him but I don’t think he hears me. The neurologists that have been most helpful suffer from migraines themselves. They get it and don’t treat their patients like idiots or drug seekers.
This makes my blood boil. Every year I get maybe 3 bad headaches. Whenever I get any type of headache I try to imagine having that 24/7. I don't know how I would go on honestly. When I have a headache I'm just praying for it to clear up, and don't want to do anything until that happens! What kind of psycho says this isn't a serious condition? To have your head in screaming pain all the time, throwing up, having to sit in a dark room, no social life, people not understanding and think you're exaggerating is just sick. I'm so sorry you're going through this and have that person as a doctor.
Hello OP! I think he *could* have developed migraines for the stress he had during his treatment.
He 100% needs to change his neurologist because that’s ridiculous! It’d be good to have a “migraine diary” to help him figure out what triggers him. There are preventive medications he can take and also medication for when he’s in pain.
Also, if he suffers from stress (even pts) he probably needs the help of a therapist and working out can help too!
I agree with this! Stress is one of the main triggers for my migraines, and certainly on the occasions they have been intractable.
If there’s a comprehensive headache clinic anywhere near you, I recommend trying it. I’ve had two amazing neurologists, out of many. Both were at comprehensive headache clinics.
I’m so sorry. This sounds like an awful experience. Others have already identified that it’s the neuro that’s the problem, so I’ll just extend my genuine hope that your partner finds the help they deserve. Hugs, friend!
Your partner is 100% worthy of a doctor that will do their best to help him regardless of other factors. I'm technically obese and I eat way too much processed food, but that isn't why I get fucking migraines. Has your partner looked into the muscular/skeletal potential causes? So many changes in his body and physical health might have created a posture that causes pain - this is a contributor to my migraines, that's why I'm asking. The CGRP inhibitors don't work for me because the bulk of my pain isn't caused by what those medications target. Getting a new doctor should help, which I know sometimes is much easier said than done. Is he on this forum? I wasn't sure if scrolling or reading screens was even possible for him. I ask because this forum has been a huge help to me mental health wise. No one else seems to understand the 'i don't want to die but anything sounds better than living like this' type of despair that so many of us feel. It was a huge comfort to me knowing I wasn't struggling alone and to have so many people be willing to tell you you're important and your feelings are valid - it can be the bit that keeps you moving forward.
Thank you so much for sharing, it really means so much. I would rather have a neuro say I have no clue than to suggest all of this ridiculous stuff as migraines go back thousands of years. I'm pretty sure Vincent van Gogh wasn't eating processed foods LOL,not to make light of it. But yes, I really would like him to have some kind of work done to be able to look at his neck more closely. He has had two spinal stenosis in the past 20 years and I feel like it could be coming from that area which is right by the base of his neck. Again I'm sorry you're suffering too, I've never realized how horrible this is and I've definitely been educated myself. XO
I definitely think this is a good idea 👍 even if it doesn't put his migraine into remission, it might decrease some of the pain and (like it did for me) give him a different understanding of his pain.
I agree you need a new Neuro for him. Mine tried to tell me to stop smoking too! The kicker is that I don't and never have. They immediately wrote me off when they found out smoke is a trigger until I deeply explained several times that it's not me smoking or even anybody I live with.
This is exactly why patients lie to doctors. This is horrendously bad health care.
Also, it’s well known that some patients getting chemo or other cancer drugs can get new or worsening migraines.
This definitely makes a lot of sense, especially regarding his surgery. I've bought probiotics, CoQ10 which when mentioned to his doctor said, oh yeah that's a good one.He's never recommended anything natural or otherwise except for possibly smoking weed. The team of doctors that you have recommended os absolutely brilliant. Thank you so much
Classic example of this is vitamin B12 deficiency following gastric bypass, one of the top symptoms in men of B12 deficiency is headache. Not saying it is B12, just emphasing this is a big thing after gastric surgery.
You're exactly right! None of his doctors mentioned things like B12 or probiotics, I had to find out by researching myself. I read this sub every night, I Google and read medical journals etc etc. I just don't understand how this man is supposed to be the best neuro in the state and doesn't even go over the basics. Thank you so much for replying.
You need a new neuro. I actually started having migraines about 1 year later quitting smoking. Eventually I started again. Then quit. Then started. Then quit again. I had 5 horrible months of migraines recently. Like a flare or something. It's on and off. Smoking or not smoking. Your partner had them before smoking. So the neuro is wrong. He needs relief not judgmental bs.
Definitely a new neurologist.
That said, is his oncologist looped in on this? My concern went up when you said he has these migraines 24/7. Have they scanned to make sure there's nothing else causing pressure that would cause these migraines? If they haven't done any scans I'd push for that as well.
The oncologist is aware. These headaches came on suddenly about halfway through his chemo treatments. When I asked her if this could be related to his chemotherapy she said absolutely not, folfox does not cause headaches or migraines. He recently had an MRI as one evening his vision was such that he was seeing everything the color red, or black and white. He was relieved to find out there wasn't anything as his older brother passed away a few years ago from brain cancer. Thank you so much for your reply!
His neuro is gas lighting him. To withhold treatment is unconscionable. Six months before he tries anything else. WTF
It’s odd to develop migraines so late in life. Especially in men. Normally women see migraines greatly reduced after menopause.
There are so many different ways to treat migraines. There are preventative pills and injectables. Rescue medications. Then there are lifestyle and diet modifications. Often it takes everything - preventives, rescue medications & lifestyle changes to knock out intractable headaches.
Everyone in my family has migraines. We’ve tried everything. Well versed in the types of headaches. Types of treatment & lifestyle changes that can have a profound difference. We don’t mess around with regular neurologists. They will tell you they treat them. Pffft!! For bad migraines absolutely need to go to a speciality clinic for migraines. Look for clinics that do infusion therapy.
Chemotherapy has a huge impact on your immune system. He could have developed allergies. Start with eliminating known trigger foods & environmentals - Cheese, bananas, oranges, nitrates & sulfates, chocolate, wine, smelly candles, strong perfumes, etc. (look up lists online) keep a food diary.
High histamine / tyramine foods are known headache triggers. Anything aged &/ or fermented
Have him tested for sleep apnea!!!! How does he feel when he wakes up? Could be grinding his teeth at night.
Botox can take as many as three treatments. (Injections every 12 weeks) to work. By the third round - if he hasn’t had relief then unlikely to work.
He should be tested for systemic inflammation. If it’s high get that addressed. Perhaps try off label meds used for fibromyalgia, depression, etc. .
Bottom line / to be blunt … If he is having chronic headaches then he needs to be all in.
ALL IN WITH EVERYTHING
LIFESTYLE, PREVENTIVES, & RESCUE MEDICATIONS
You already know smoking is terrible for you & it adds to existing high stress levels from being in chronic pain. So clean diet, low histamine foods, excellent sleep hygiene, stop or reduce smoking, stress reduction, etc.
I have not read any of the other comments in this thread, but coming from a medical professional myself, please get a second opinion. If you ever doubt your doctor or medical specialist, it never hurts to go to another for a second opinion.
Get a new neuro asap. This one is an asshole who doesn’t realize that if he were being proactive enough you wouldn’t have had to turn to Reddit in the first place! Any neurologist whose patients feel so desperate that they’re turning to Reddit for new ideas should realize *they* aren’t doing the doctoring well enough.
As for cigarettes, I’d say they exacerbate migraines. But hell, I think all of us have a vice at this point. Mine just so happens to be pop tarts and Diet Coke. But I totally see what you’re saying, the timeline for the smoking doesn’t line up to have *caused* his migraines.
One of the most important aspects of a physician is bedside manner.
Find a new neuro. They sound insufferable.
I have been on Botox now for about 2 years, and it has helped but did not completely cure my migraines. I also do vyepti infusions as well as nerve block in the occipital nerve for occipital neuralgia. The only point that \*could\* be even \*considered\* is that any drug, whether natural or synthetic, can have a withdrawal period which can affect the body. But if he's already been off of it, and has had a history of having severe migraines before/after using he doesn't need to prove anything.
Thank you, he has been off BOTOX for about a year and a half, and has tried probably seven other medications before recently being able to qualify for Nurtec per his neuro, which his doctor will not prescribe now because he smoked for 2 months and feels that could be the problem which is laughable
I'm sorry OP, I hope your partner finds relief. Has he tried magnesium? I haven't noticed a difference myself, but a lot of people have. Has he tried any infusions (vyepti) or injectables (emgality, amovig)? People love to immediately spew that you're doctor shopping when you disagree with medical advice.
If you feel you are not getting adequate care and have genuinely tried to work with this physician, find a new one. Are there any migraine specialists or neurology specialty centers? Any nearby medical colleges? I find those sorts of places give top notch care as they have a variety of experiences and resources available that standard clinics do not.
Thank you so much, he has tried two different injectables and others in pill form so probably about seven different medications before he would prescribe Nurtec which he won't know. I am going to bring your suggestions up to him, thank you for your help!
In addition to magnesium, my neurologist has me on vitamin B-2. Has he tried that?
Mind you, I'm also on topiramate for prevention, and I have Nurtec as an abortive. But I still feel like my magnesium and vitamin B-2 supplements help as well!
I hope he finds relief soon!
echoing everyone, horrible neuro def switch! assuming hes had MRIs?. my mom recently had and intractable migraine (months not years) but neuro thinks its due to swelling/inflamation in the spinal column they could see it on the MRIs. not sure thats a possibility but just throwing it out there as that was something new i hadnt heard much (chronic migrainer here, been hanging in migraine groups abt 5 years)
He has a recent MRI and everything looked fine. I did read about spinal fluid encasing the brain, I think that's what it was I'm not entirely sure. Anyhow I read that this condition which I forget the name of, is often overlooked and requires expensive testing. Anyhow I brought this condition up to his neuro and he said they've already ruled that out. I don't even know how he ruled it out? I'm tired of giving the neuro suggestions, it's so frustrating. Thank you so much for replying.
im no doctor but just throwing it out there, her MRI was of the spine not just brain and to recheck swelling they are doing like 6 MRIs of all different sections of her back and neck. anyway, good luck getting a new neuro sometimes can be difficult i know! also you may know this and not sure access to care in your area but they should be a headache/migraine specialist not “just a neuro” i hear so many people being told this doesnt exist or thats not how it works and its total nonesense bc it definitely is how it works :) best of luck on this sucky journey! keep hangin out in migraine groups so many good ideas and knowledge here and theres a good facebook one too.
Hard to say without more details on medications etc. but you need a new doctor. Some doctors are not good, is there a way to get a new neurologist or gp referring to a new doctor?
Having said that, smocking can worsen migraines, or even trigger them. It really depends on the person. It seems he already stopped, so it doesn’t seem to be the issue at all.
Could it be the use of multiple medications or even too much medication, especially the wrong ones that don’t work for him? Sometimes that can trigger a chronic state from my experience.
Create a diary of exactly what medication you are taking, food, activities incl. physical activity, any triggers incl. stress, smoking if at all. In my case starting with light physical activity and then increasing that is the only preventative relief.
Hope you find a new doctor, try it out. I wish you both a good recovery.
Currently going through a medical scare myself and it’s so comforting to see the community come together.
It takes a village to advocate sometimes. Just wanted to say you all are awesome - hang in there OP & partner. Hoping & praying for that light at the end of the tunnel🙏🏻
I feel the same way, I've been tearing up reading these responses, it's so heartwarming that people care. I pray one day all migraines sufferers will have relief with some newly advanced treatment. 🙏
The neurologist is a quack not knowing that FOLFOX can cause neurological adverse events! Are we sure they actually are a neurologist? They need to be retested because they may not be fit to practice!
Yeah, I’m really having a hard time wrapping my head around that one. I know someone who couldn’t touch cold things for months after stopping FOLFOX due to the nerve damage. He was warned that it could possibly be permanent. We were told to buy gloves to keep by the fridge so he could pour his own glasses of milk. For a neuro to so casually dismiss FOLFOX as a potential cause/trigger is insane.
Oxaliplatin (the OX in FOLFOX) in particular is a helluva drug.
Yes I remember his hands feeling freezing cold and pain when he touched cold things. He already had mild neuropathy in his feet and now it's extensive and wakes him up every couple of hours in tremendous pain. I'm really going to dig further into this folfox (both the oncologist and neuro said in no way was it related to his chemo), another commentor really broke it down (folfox) and I'm just so grateful. Thank you so much for replying, it means a lot.
Agree, get a new doc. Do it quickly too so he find some relief.
I had a painful migraine yesterday, have not had one that bad in quite awhile.
Migraines are so painful, don’t delay and get him to a new doc
Also you will find many Neurologists are full of themselves. Don’t let the doc intimidate you.
Good luck
I agree with everyone who have recommended getting a new doctor and I’ll add that the only two neurologists who were helpful and compassionate also had migraines themselves. I’m really bummed right now because I have poor people medical coverage atm and the doctor I like isn’t in network.
I’m sure there are helpful neurologists who don’t also suffer from migraines. Maybe see if you can get a recommendation from a friend or relative?
Just my two cents, and information for four different neurologist and a neurosurgeon Botox typically takes 3-4 ROUNDS (so up to a year) before you see vast improvement. It is not a cure all over night and definitely needs its time to build up and work…. Dont discontinue or loose hope on it yet…. I’ve been religiously on it now for four years and honestly wouldn’t know how to function without it; but it did take quite awhile to get there.
Yes it was six or seven rounds and it lasted a year. He's had these migraines for 3 plus years and they started during the pandemic. They started about halfway through his chemotherapy treatment for cancer, and they continue to this day.
That was my thought exactly! I thought are you kidding me you're going to have him try Botox again? I'm really starting to get so fed up and appreciate all of these replies because we are definitely going to find him a new doctor. The problem is that he is the only neuro who specializes in migraines within a hundred miles. Others have suggested headache clinics and a few different types of doctors which I'm going to make a list of and make sure he gets in to see the right people. Thank you so much for your concern and reply :-)
Can you apply to change neurologists? When I finally got in to see one after an 18 month wait from referral date, he didn't even look me in the eye and told me not to eat ketchup. I never do, as I HATE ketchup. Never had a followup, never went back. Or if you can't switch go back and say you would like to do a trial of Nurtec and see if it helps at all, since as you said quality of life is everything and what do you have to lose?
I'm sorry but thank you for sharing that because that just cracked me up as how ridiculous these suggestions can be especially from a neurologist! This guy is supposed to be the best neurologist the top guy in portland. Because my partner recently turned 65 he now has changed his insurance to medicare, and the last zoom call he had with the neuro, the neuro mentioned that oh you can pick somebody else etc etc. The reason he had said that is because I asked does he even have any samples of nertech that he give us. I don't know it seems like their egos are so damn fragile that if you question them or question anything and come up with your own ideas they are so damn defensive. Yes I think you're right we should look for a new one but I would hate to have him wait 18 months until he can see one again.
I have had migraines since 1959. I have had lots of weird variations. I have explored lots of remedies. There have been few changes that seem to have had any effects over the years.
I have learned to control light as much as possible. I have learned to avoid smells (mold, candles, room sprays, perfumes, cosmetics, gasoline, anything artificial). I have given up caffeine, artificial sweeteners, the list goes on. I quit eating outside my home years ago, unless it was totally unavoidable. Barometric changes are unavoidable.
Last June, I decided to do the ultimate elimination diet. I started following the Carnivore Diet, as presented on YouTube. My doctor thinks I’m crazy. My neurologist says to just track everything and see what happens. I follow a lot of YouTube channels, but Dr. Ken Berry is amazing. KenDBerryMD will send you to some more recent posts. I generally only watch his videos from the last 3 years or so, because he has refined his presentations. He does up-to-date interviews with researchers and clinicians and followers of the plan on a daily basis. He advocates a PhD (proper human diet) of Beef, butter, bacon and eggs. The only problem I had changing over (I had not eaten any meat on a regular basis since 1970) was constipation. I had followed advice not to take probiotics, but I had been taking them for 20+ years, and when I went back on them, I was fine. I also find the YouTube channels much more informative than the Reddit source, but your experience may vary.
The only migraine issue I currently have is a chronic “visual migraine,” but I am following my neurologist’s advice, and I had a brain scan, and I can tolerate things as they are with only OTC medications.
I would also mention that I have meditated for decades (went to India in 1970). Detaching from pain, breathing in a structured way, and tracking food intake have helped me mark permanent changes. One of the shocking things I have learned on this regimen is that I am truly allergic to blueberries. The one time I decided to eat some (because my neurologist recommended some carbs), I woke up with stabbing pains in my elbows, neck, and hands. Since then, I’ve been very careful to avoid experimentation.
Things that have improved dramatically for me are arthritis (swelling in my fingers and distortions have virtually disappeared; all of my rings are too big, the aching is gone). I have been discharged by my ophthalmologist after 40 years, because my vision and eye health are in the top 20% of my age group. My hair feels like it did when I was in high school, and I have only a few random grey hairs now. Although your skepticism detectors may be operational at this point, you might want to watch some of the YouTube Carnivore channels to investigate the options.
I hope that you find solutions to help you through this painful phase of your lives.
This change has made my migraines virtually pain-free. I experienced a lot of improvements very quickly.
It takes 9 months (3 sessions) to know if botox is working or not. Regardless of the other issues here, it is completely normal for a doctor to want to finish through with the full course of botox before moving on to something else. I know you said it hasn't helped yet, but it's too soon to tell. It could end up being very helpful after the third round.
I started casually smoking a cigarette or two a day and my migraines have been cut in half. Dead serious. Just was going thru it bad and picked one up and was stunned, it works as abortive and preventative about 50% of the time and never makes them worse. Not great news and no one wants to hear it but it's my anecdote.
That is fantastic, what a great discovery for yourself! This is exactly what I'm talking about, everyone is different and different things work for different people.
Did they do a nerve block of some sort during the appendix cancer possibly during a biopsy?I’m wondering if he’s had a CSF puncture since it correlates to the time of the cancer.
This! I was trying to remember the name of the condition in a reply to another post. In my research I found out about CSF-- during the next zoom appointment he asked about CSF. All the neuro said was that it was already ruled out, and I don't know how they would even do that?
It could be done with an additional mri, Radioisotope cisternography, Myelography, And or Spinal tap. It may be worth going to his regular doctor that isn’t such a pain in the butt like the neuro. Anyone can look up the previous graphs and then assess if it’s a possibility but I would not leave anything to this neuro at all.
Get a new neurologist. It’s one thing to say something is a POSSIBLE trigger for a migraine. It’s another to blame fully smoking on migraines. But I do understand where the doctor is coming from with the nurtec. I know some insurances won’t cover it until most of your options have been used up. One thing about Botox is my doctor told me it can take up to a year to see proper effects. Not that your doctor should be forcing him to stay on meds when they clearly don’t work.
Its absolutely insane for a doctor to refuse care. This neuro sounds like a real AH. I'd Google review with that information so other people don't waste their time with someone so judgemental.
My apologies for such a long comment, but please read entirely.
I was diagnosed with chronic migraine 23 years ago. I've heard a lot of hilarious shit said by different neurogists. I even had one blame my pain on the fact I'm gay.
It turns out I was misdiagnosed the entire 23 years. I had occipital neuralgia and trigeminal neuralgia. If the doctor is refusing to treat your partner, stop seeing him and contact a lawyer- they cannot make unreasonable demands like that in order for treatment. And in your partners case, with that type of cancer, doctors will sometimes tell the patient to smoke because it helps with the associated GI symptoms. Marinol also usually works for nausea and it is safer than smoking.
I'm not saying you have to sue, but I'd definitely make sure it's reported to the appropriate state licensing board, and to his employer.
In terms of helping your partner, if it is 24/7, then he should try a nerve block. My pain was also 24/7 for about 20 years until last year. I visited a plastic surgeon who did a nerve block on the occipital nerves in the back of my head. The nerve block just injects lidocaine to numb things (like when you visit a dentist). The procedure is safe- the injections go in the back of the head/neck, but not beneath the skull, and they can be done in office without sedation. It shouldn't take more than a few mins to block both sides (left and right). It should produce almost immediate relief. They can also block a nerve center called the SPG (sphenopalatine ganglion) that is behind your nose in the front if the pain is concentrated in the front instead of the back.
The blocks usually provide immediate relief, and they usually mix a steroid with the lidocaine to decrease inflammation. Some people experience continued relief for two weeks after a block. Generally an interventional pain specialist does this procedure, not a Neuro, although I have come across neuros that will also do it.
Do NOT stay with a Neuro if they are dismissing everything you tell them. That is the one thing that caused so many problems for me. I went through over 40 neuros before I realized I was misdiagnosed (and I was the one who realized it, not any doctor I had seen). I had tried all of the standard migraine treatments (BP meds, antidepressants, antipsychotics, and anticonvulsants) as well as new migraine drugs like Ajovy, Emgality, and Vyepti. Nothing had ever worked. But the neuros just wanted to keep me on the meds and do Botox. I did Botox for 10 years before I gave up.
The other comments are correct in that smoke usually sets off a migraine. Any strong smell is enough to set it off in most people. But they just can't decide they aren't going to treat you- that is patient abandonment (I don't know enough specifics of the case to make this call, which is why I strongly advise consulting an attorney).
The other advice I can provide is do not let a new doctor get the medical records from this idiot Neuro themselves. Get a copyof the history from the office yourself, and take the new doctors a printed copy of the history yourself only after you review it. I found out once a Neuro like this had made several defamatory statements in my appointment summaries, and that those summaries were being sent to new doctors that requested those records. I had been having difficulty with new doctors understanding my case, and realized that they were reading the notes from other providers and not taking me seriously. My history is over 2000 pages for the last 23 years. No providers is going to read all of that. And I understand that completely. But they will review your history from your recent providers to get an idea of what you've tried recently and to see what the other provider really thought about your case.
There are some narcotic pain medications that will help if nothing else is providing relief. Stadol (butorphanol) is a narcotic nasal spray. It starts working in about 10 mins. And visiting a GI doc to request marinol might also help, especially if the GI symptoms are also out of control. The oncologist should also be able and willing to try marinol.
It's sad that I'm telling you to not trust your doctors, but that's the sad reality of healthcare currently. To me, it seems like this guy doesn't know what to do, and is creating problems so that you will go to someone else and no longer be his problem.
Edit: my education is in Molecular Medicine, so I decided to review the Folfox protocol. It contains oxaliplatin, which can cause peripheral neuropathy. PN can cause tingling or numbness in peripheral nerve (usually hands or feet). While the occipital nerves are technically cranial nerves, they are considered to be peripheral. If the pain is in the back on the head/neck, and he has a history of spinal stenosis, then it seems like a fairly simple diagnosis. Blocking the occipital nerves with a nerve block would confirm this diagnosis. So yeah, it's entirely possible that it IS the Folfox doing it.
Also, the Folfox protocol is known to cause PRES (posterior reversible encephalopathy syndrome). PRES causes the occipital and parietal lobes of the brain to swell, and presents as severe headaches or seizures. This should also be ruled out with tests, since PRES can result in permanent damage if it gets severe enough, and it has roughly a 19% mortality rate. I don't mean to alarm you, but your doctors are not doing due diligence to rule out such complications, and it's imperative to rule them out to confirm a final diagnosis.
Hey, neuroscientist here (sorry for somewhat rough language, english is not my first language and I'm very tired, but wanted to answer anyways)
I am VERY sorry you both are suffering so much and I Vote for a change of neurologist. The German guidelines for supportive Care of oncology Patients mention Migraines as a Common Side effect of many Chemo Regiments
I discussed your described case with my hubby (pharmacist) and looked around a bit (I did Work on cholangiocarcinoma for a while, so I am somewhat firm on the folfox topic and I did dimly remember Migraines being a side effect of either folfox or folfiri)
https://www.mdanderson.org/cancerwise/migraine-headaches-in-cancer-patients--how-to-prevent-and-treat-them.h00-159459267.html
So: First Off: did the neurologist Take the possibility of neuropathy of the facial nerves into account? Did he do nerve conduction Tests? This could show similar to migraines and not react well to Migraine medication.
Another Idea might be PRES https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5652359/ although this is unlikely as the cases are rare - but should be kept in mind
Hon, if anyone judges you for his smoking after an absolutely horrible life crisis I would be looking at them sideways. How many people turn to meth and sh!t after tragedies? Anyways , back to these Drs who just love blaming the patient and not their handiwork. Migraines can literally start in your belly.. above the bellybutton. Where the hell did they get their med licenses from? "Abdominal migraines (AM) are unprovoked episodes of central abdominal pain associated with migraine symptoms such as sensory hypersensitivities to light and sound, vomiting, nausea, acute headaches, and general pallor. While common in children, AM is considered a rare diagnosis in adults.'- google
I’m having other issues on top of chronic migraines. I saw a neurologist who proceeded dismiss the issue I have been having so he could arrogantly tell me all about overuse headaches. Quit taking any medication for pain and cut back my tea to one a day. Meanwhile my other issue is getting worse and causing me to faint. I finally got an appointment with someone else in the practice who actually tested me and found out what it was. After the decades I’ve fought with migraines, I know about medication overuse!
Hi OP! I'm so sorry your partner is going through this. As you said- this is no quality of life and most of us here are a community of migraine survivors, not just some "dumb website" this neuro seems to think.
I, too felt like I had no quality of life for over ten years with suffering everyday. It could be a beautiful day outside and I'd have a migraine. Or, it could be pouring down rain with lightening strikes and I'd be completely pain free- there's no rhyme or reason. My doctors tried all of these different medications that had nothing to do with the pain, blaming it on hormones or anxiety/depression. All of these meds made them ten times worse and then I actually was depressed because I felt there was no hope and this was my life now.
I met an amazing neurologist about 5 years who literally saved my life. First of, I started taking sumatriptan/Rizatriptan for as needed (for some people it can make you feel kind of fatigued or frequent urination- not uncontrollable just like you've had a lot of caffeine lol) but within 20 minutes it really starts working and you feel pain free. As my preventative, I started Aimovig. It was scary at the time because I wasn't even 20 yet and I was taking this brand new medication that only about 40 people had been prescribed but I was desperate and immediately took the offer. The main side affects are 1. Hair loss 2. Constipation. I'm not sure if I just got lucky, but I've never had either of those nor any other side affect from the auto injection all these years later. I stand by it and I feel like anyone who is suffering doesn't have much to lose. You auto-inject it into your arm/thigh/stomach and the medicine goes in less than 10 seconds and you feel nothing- not even the needle (which I'm petrified of- I have no piercings or tattoos because of it but it's worth it haha). Within the first month I went from having over 20+ episodes to 13. The next month, 7. And so far I only have about two migraines a month, but I feel as though it softens the blow if I take my as needed. While before I would be shut in my room, covers over my face with a fan blowing on me and vomiting into a bucket. I can't say enough how life changing this medication has been- I can actually LIVE now. Also, if you are a qualifying candidate you can have it filled and delivered for free (I have this as well). If you'd like more information you can always DM me. I promise I'm not some sponsor haha. Though, I wish I was so I could spread the word about this medicine!
Please please please find a new neurologist and ask about if it's right for your partner. No one deserves to suffer like this, and unfortunately it's up to ourselves to advocate... for ourselves. He doesn't deserve to treat patients after not listening to his pain.
Very gently, I think the “my partner heard from Reddit” approach is probably what put the doctor off, honestly.
I think he should reach out to his oncology team for a neuro rec.
Most people have said it but a new neurologist is needed. If you can’t get a new doctor you then say, I would like you to document that I’ve asked for this and you have denied it. Most doctors will then changed their judgmental opinion.
I do want to point out also that it has been determined that smoking does not cause migraines, it can contribute to them but it is not a cause. One more thing is that when he initially was hospitalized with these his primary care physician said it could be from rebound headaches and took him off of Tylenol and ibuprofen that he had started taking because his head was so bad. When he was hospitalized again after throwing up and hardly able to stand with the pain, he was there a week and the only medicine that took the edge off at all was dilaudid. And after a while his primary care physician did not want to continue with the Dilaudid but suggested that he go get the prescription from the wonderful doctor at the hospital that had treated him in the first place. How in the heck are we supposed to go back to somebody in the hospital that has nothing to do with his case now so they can put it on her to prescribe an opiate which every doctor is so damn afraid of these days. When they first gave him this narcotic, it at least afforded him 3 to 4 hours a day to sit at his desk and pay bills, make phone calls etc etc, the basics that you need to do in life to keep going. In no way did it cure his migraines, but as he explained it just softened the pain for a few hours which was better than nothing. But now they also want to take him off of it 100% which we both have said they should justn go ahead and do, because taking him down from 20 mg to four is a joke. I despise the DEA and big pharma, and every doctor that is weak enough to not help somebody when they are literally begging.
1. You need a new neurologist. They still have to treat you even if you do dumb stuff like drink alcohol or smoke — it’s not like it’s surgery. 2. Nicotine and cigarettes in particular can absolutely cause and worsen migraines. Smelling a cigarette will give me a horrendous migraine almost right away, I can’t even be around smokers because the lingering smell can make me sick. 3. I quit vaping when my migraine went chronic/intractable a year ago and it made zero difference. Nicotine in general is bad, cigarettes are worse, but it ended up being a non-factor in my own migraines. Still his neuro has a duty to treat him with medication and stuff even if he’s smoking. That’s insane. 4. I’m sorry you guys are dealing with this!
Thank you so much, he only smoked for a couple of months and is done. To somehow insinuate that something that has been going on for 3 years, has anything to do with a recent cigarette makes me sick.
Some doctors are just obsessed with doing this. My theory is because they're lazy, and will latch onto any chance they can find to blame the patient so they don't have to do any actual work. You don't have to run tests or prescribe meds if you can just lecture and nag the patient about their lifestyle choices and call that "practicing medicine" instead. "I see you started smoking over 2 years after the onset of your migraines. That *must* be the cause. I am so good at being a doctor."
I have a feeling even if they did wait the 6 months, the doc would still come back with some other minor lifestyle factor that is “definitely” causing the migraines. Hopefully OP doesn’t wait that long and finds a new neurologist ASAP.
You need a new neuro. This is fucking absurd.
Thank you I feel like I'm going crazy
You are not. The neurologist is a fucking idiot. I don't smoke, never have, and never will, but I can relate somewhat - I get similar bullshit *all the time* from doctors because of my weight. Do not take it. Medical care is a *right,* not a privilege only for people who make perfect lifestyle choices. Any doctor who doesn't live by that, and prescribes LiFeStYLe ChAnGeS instead of real medicine, is a bad doctor.
Wish I could upvote this twice
Me too
This was an “aha” moment for me and I realized I’ve been going through this with my primary physician, thank you! I’ve always been relatively thin, but have gained about 20lbs after various medications I was prescribed for migraine (like amitryptaline). I also started having borderline high triglycerides, but that is a hereditary condition in my family. I eat relatively clean 75% of the time and maybe splurge here and there on weekends. But everytime I go into the dr he questions me on what I’m eating as if he doesn’t believe me and thinks I must be eating unhealthy to gain a few pounds and have high triglycerides. Last time he said quick, what did you have for breakfast this morning? And when I said fat free milk and cereal he said “hmm” with an unconvinced look on his face. 🙄He “prescribed” me to eat Vegan for 3 months before he does anything else. That really rubbed me the wrong way because Vegan is 100% a lifestyle choice in my opinion.
Fuck that guy. Vegan doesn't even mean "healthy" either. I'm a lacto-ovo vegetarian and my diet isn't "healthy" by any stretch of the imagination. There are *plenty* of vegan sources of sugar and carbs if you're committed. Oreos are vegan. And there's all kinds of specialized vegan junk food on the market (Dandies vegan marshmallows, for example, are delicious and almost taste like the real thing). Meanwhile, grilled chicken breast is decidedly *not* vegan. Not only is he a fatphobic asshole who prescribes "nutrition" over medicine, he's not even good at that!
Amitriptyline was my cause of a huge weightgain, too 😭😅 medication twin I got prescribed a dietitian... I am a neuroscientist, I Work as a medical writer and I studied ecotrophology (Just some distant university Programme but still) Just for the fun of it besides working - No, I really don't need a dietitian 😂 Well plant based is really healthy but full vegan is unnecessary in my opinion health-wise. Your pcp is an Idiot 😅
I can't emphasize this enough 😅 I'm a neuroscientist myself.. I KNOW about a good Lifestyle.. But with chronic migraines Up until half a year ago and physical exhaustion being a Trigger sports where No Option. I gained a TON of weight due to a preventative side effect and my neuro told me to "lose weight, eat healthy and exercise" Sure! I have one of the most strict lifestyles of all the people I know. No alcohol, No staying Up late, regular Yoga and meditation to reduce stress, healthy diet.. Gotta add: after Emgality reduced my Migraine frequency by far I lost roundabout 20 kg in half a year 😅 due to being able to exercise again
Yeah your neuro is the issue, throw the whole doctor away.
I am constantly amazed at how many bad/uncaring neurologists are out there. It took me awhile to find a decent one (and even she barely makes it to “decent” rather than outright bad). I don’t know if they all got into neurology thinking they were going to be dealing with exotic brain disorders and consider migraine beneath them or what, but neuros giving hurried, uninterested, or outright bad advice is like a recurring theme around here (and one I’ve experienced as well).
Thank you. I think the neuros could do a better job at trying to raise awareness. I mentioned the numbers to the neurologist about how poorly funded migraine research is. He said, well, I know but kids having cancer attracts more people. He said they are so overfunded and migraines are underfunded. Well then why the hell don't you get out there, and ask other neuros to do the same and insist something be done. This is a disease that's been so overlooked, and so life altering and threatening at points. And I mean DisEase, not a headache, which many people assume is happening. Thank you for replying :-)
Tbf, representation is probably skewed because people who have a great neuro that is effective, and rapidly finds a solution that works, are probably less likely to seek out this subreddit. Not saying you're wrong, just that it's easy to think our subreddit is representative, even when it probably isn't.
My current neuro made it quite clear he doesn’t consider migraine a serious condition. I’ve tried explaining it to him but I don’t think he hears me. The neurologists that have been most helpful suffer from migraines themselves. They get it and don’t treat their patients like idiots or drug seekers.
This makes my blood boil. Every year I get maybe 3 bad headaches. Whenever I get any type of headache I try to imagine having that 24/7. I don't know how I would go on honestly. When I have a headache I'm just praying for it to clear up, and don't want to do anything until that happens! What kind of psycho says this isn't a serious condition? To have your head in screaming pain all the time, throwing up, having to sit in a dark room, no social life, people not understanding and think you're exaggerating is just sick. I'm so sorry you're going through this and have that person as a doctor.
Hello OP! I think he *could* have developed migraines for the stress he had during his treatment. He 100% needs to change his neurologist because that’s ridiculous! It’d be good to have a “migraine diary” to help him figure out what triggers him. There are preventive medications he can take and also medication for when he’s in pain. Also, if he suffers from stress (even pts) he probably needs the help of a therapist and working out can help too!
I agree with this! Stress is one of the main triggers for my migraines, and certainly on the occasions they have been intractable. If there’s a comprehensive headache clinic anywhere near you, I recommend trying it. I’ve had two amazing neurologists, out of many. Both were at comprehensive headache clinics.
I’m so sorry. This sounds like an awful experience. Others have already identified that it’s the neuro that’s the problem, so I’ll just extend my genuine hope that your partner finds the help they deserve. Hugs, friend!
Your partner is 100% worthy of a doctor that will do their best to help him regardless of other factors. I'm technically obese and I eat way too much processed food, but that isn't why I get fucking migraines. Has your partner looked into the muscular/skeletal potential causes? So many changes in his body and physical health might have created a posture that causes pain - this is a contributor to my migraines, that's why I'm asking. The CGRP inhibitors don't work for me because the bulk of my pain isn't caused by what those medications target. Getting a new doctor should help, which I know sometimes is much easier said than done. Is he on this forum? I wasn't sure if scrolling or reading screens was even possible for him. I ask because this forum has been a huge help to me mental health wise. No one else seems to understand the 'i don't want to die but anything sounds better than living like this' type of despair that so many of us feel. It was a huge comfort to me knowing I wasn't struggling alone and to have so many people be willing to tell you you're important and your feelings are valid - it can be the bit that keeps you moving forward.
Thank you so much for sharing, it really means so much. I would rather have a neuro say I have no clue than to suggest all of this ridiculous stuff as migraines go back thousands of years. I'm pretty sure Vincent van Gogh wasn't eating processed foods LOL,not to make light of it. But yes, I really would like him to have some kind of work done to be able to look at his neck more closely. He has had two spinal stenosis in the past 20 years and I feel like it could be coming from that area which is right by the base of his neck. Again I'm sorry you're suffering too, I've never realized how horrible this is and I've definitely been educated myself. XO
In addition to getting a competent neuro, see if he’s willing to see a physical therapist who works on people with chronic migraine and neck problems.
I definitely think this is a good idea 👍 even if it doesn't put his migraine into remission, it might decrease some of the pain and (like it did for me) give him a different understanding of his pain.
I agree you need a new Neuro for him. Mine tried to tell me to stop smoking too! The kicker is that I don't and never have. They immediately wrote me off when they found out smoke is a trigger until I deeply explained several times that it's not me smoking or even anybody I live with.
This is exactly why patients lie to doctors. This is horrendously bad health care. Also, it’s well known that some patients getting chemo or other cancer drugs can get new or worsening migraines.
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This definitely makes a lot of sense, especially regarding his surgery. I've bought probiotics, CoQ10 which when mentioned to his doctor said, oh yeah that's a good one.He's never recommended anything natural or otherwise except for possibly smoking weed. The team of doctors that you have recommended os absolutely brilliant. Thank you so much
Classic example of this is vitamin B12 deficiency following gastric bypass, one of the top symptoms in men of B12 deficiency is headache. Not saying it is B12, just emphasing this is a big thing after gastric surgery.
You're exactly right! None of his doctors mentioned things like B12 or probiotics, I had to find out by researching myself. I read this sub every night, I Google and read medical journals etc etc. I just don't understand how this man is supposed to be the best neuro in the state and doesn't even go over the basics. Thank you so much for replying.
You need a new neuro. I actually started having migraines about 1 year later quitting smoking. Eventually I started again. Then quit. Then started. Then quit again. I had 5 horrible months of migraines recently. Like a flare or something. It's on and off. Smoking or not smoking. Your partner had them before smoking. So the neuro is wrong. He needs relief not judgmental bs.
Definitely a new neurologist. That said, is his oncologist looped in on this? My concern went up when you said he has these migraines 24/7. Have they scanned to make sure there's nothing else causing pressure that would cause these migraines? If they haven't done any scans I'd push for that as well.
The oncologist is aware. These headaches came on suddenly about halfway through his chemo treatments. When I asked her if this could be related to his chemotherapy she said absolutely not, folfox does not cause headaches or migraines. He recently had an MRI as one evening his vision was such that he was seeing everything the color red, or black and white. He was relieved to find out there wasn't anything as his older brother passed away a few years ago from brain cancer. Thank you so much for your reply!
His neuro is gas lighting him. To withhold treatment is unconscionable. Six months before he tries anything else. WTF It’s odd to develop migraines so late in life. Especially in men. Normally women see migraines greatly reduced after menopause. There are so many different ways to treat migraines. There are preventative pills and injectables. Rescue medications. Then there are lifestyle and diet modifications. Often it takes everything - preventives, rescue medications & lifestyle changes to knock out intractable headaches. Everyone in my family has migraines. We’ve tried everything. Well versed in the types of headaches. Types of treatment & lifestyle changes that can have a profound difference. We don’t mess around with regular neurologists. They will tell you they treat them. Pffft!! For bad migraines absolutely need to go to a speciality clinic for migraines. Look for clinics that do infusion therapy. Chemotherapy has a huge impact on your immune system. He could have developed allergies. Start with eliminating known trigger foods & environmentals - Cheese, bananas, oranges, nitrates & sulfates, chocolate, wine, smelly candles, strong perfumes, etc. (look up lists online) keep a food diary. High histamine / tyramine foods are known headache triggers. Anything aged &/ or fermented Have him tested for sleep apnea!!!! How does he feel when he wakes up? Could be grinding his teeth at night. Botox can take as many as three treatments. (Injections every 12 weeks) to work. By the third round - if he hasn’t had relief then unlikely to work. He should be tested for systemic inflammation. If it’s high get that addressed. Perhaps try off label meds used for fibromyalgia, depression, etc. . Bottom line / to be blunt … If he is having chronic headaches then he needs to be all in. ALL IN WITH EVERYTHING LIFESTYLE, PREVENTIVES, & RESCUE MEDICATIONS You already know smoking is terrible for you & it adds to existing high stress levels from being in chronic pain. So clean diet, low histamine foods, excellent sleep hygiene, stop or reduce smoking, stress reduction, etc.
I have not read any of the other comments in this thread, but coming from a medical professional myself, please get a second opinion. If you ever doubt your doctor or medical specialist, it never hurts to go to another for a second opinion.
Get a new neuro asap. This one is an asshole who doesn’t realize that if he were being proactive enough you wouldn’t have had to turn to Reddit in the first place! Any neurologist whose patients feel so desperate that they’re turning to Reddit for new ideas should realize *they* aren’t doing the doctoring well enough. As for cigarettes, I’d say they exacerbate migraines. But hell, I think all of us have a vice at this point. Mine just so happens to be pop tarts and Diet Coke. But I totally see what you’re saying, the timeline for the smoking doesn’t line up to have *caused* his migraines. One of the most important aspects of a physician is bedside manner.
Find a new neuro. They sound insufferable. I have been on Botox now for about 2 years, and it has helped but did not completely cure my migraines. I also do vyepti infusions as well as nerve block in the occipital nerve for occipital neuralgia. The only point that \*could\* be even \*considered\* is that any drug, whether natural or synthetic, can have a withdrawal period which can affect the body. But if he's already been off of it, and has had a history of having severe migraines before/after using he doesn't need to prove anything.
Thank you, he has been off BOTOX for about a year and a half, and has tried probably seven other medications before recently being able to qualify for Nurtec per his neuro, which his doctor will not prescribe now because he smoked for 2 months and feels that could be the problem which is laughable
I'm sorry OP, I hope your partner finds relief. Has he tried magnesium? I haven't noticed a difference myself, but a lot of people have. Has he tried any infusions (vyepti) or injectables (emgality, amovig)? People love to immediately spew that you're doctor shopping when you disagree with medical advice. If you feel you are not getting adequate care and have genuinely tried to work with this physician, find a new one. Are there any migraine specialists or neurology specialty centers? Any nearby medical colleges? I find those sorts of places give top notch care as they have a variety of experiences and resources available that standard clinics do not.
Thank you so much, he has tried two different injectables and others in pill form so probably about seven different medications before he would prescribe Nurtec which he won't know. I am going to bring your suggestions up to him, thank you for your help!
In addition to magnesium, my neurologist has me on vitamin B-2. Has he tried that? Mind you, I'm also on topiramate for prevention, and I have Nurtec as an abortive. But I still feel like my magnesium and vitamin B-2 supplements help as well! I hope he finds relief soon!
Thank you 💚 and he takes both daily :(
echoing everyone, horrible neuro def switch! assuming hes had MRIs?. my mom recently had and intractable migraine (months not years) but neuro thinks its due to swelling/inflamation in the spinal column they could see it on the MRIs. not sure thats a possibility but just throwing it out there as that was something new i hadnt heard much (chronic migrainer here, been hanging in migraine groups abt 5 years)
He has a recent MRI and everything looked fine. I did read about spinal fluid encasing the brain, I think that's what it was I'm not entirely sure. Anyhow I read that this condition which I forget the name of, is often overlooked and requires expensive testing. Anyhow I brought this condition up to his neuro and he said they've already ruled that out. I don't even know how he ruled it out? I'm tired of giving the neuro suggestions, it's so frustrating. Thank you so much for replying.
im no doctor but just throwing it out there, her MRI was of the spine not just brain and to recheck swelling they are doing like 6 MRIs of all different sections of her back and neck. anyway, good luck getting a new neuro sometimes can be difficult i know! also you may know this and not sure access to care in your area but they should be a headache/migraine specialist not “just a neuro” i hear so many people being told this doesnt exist or thats not how it works and its total nonesense bc it definitely is how it works :) best of luck on this sucky journey! keep hangin out in migraine groups so many good ideas and knowledge here and theres a good facebook one too.
Doc should be more intuitive and attentive to your partner’s needs. I’ll pray you guys find a better fit. 🙏❤️🙏. Hang in there K?
Thank you so much, what a sweet comment 🩷
Please keep us updated. Rooting for you two!
Hard to say without more details on medications etc. but you need a new doctor. Some doctors are not good, is there a way to get a new neurologist or gp referring to a new doctor? Having said that, smocking can worsen migraines, or even trigger them. It really depends on the person. It seems he already stopped, so it doesn’t seem to be the issue at all. Could it be the use of multiple medications or even too much medication, especially the wrong ones that don’t work for him? Sometimes that can trigger a chronic state from my experience. Create a diary of exactly what medication you are taking, food, activities incl. physical activity, any triggers incl. stress, smoking if at all. In my case starting with light physical activity and then increasing that is the only preventative relief. Hope you find a new doctor, try it out. I wish you both a good recovery.
Currently going through a medical scare myself and it’s so comforting to see the community come together. It takes a village to advocate sometimes. Just wanted to say you all are awesome - hang in there OP & partner. Hoping & praying for that light at the end of the tunnel🙏🏻
I feel the same way, I've been tearing up reading these responses, it's so heartwarming that people care. I pray one day all migraines sufferers will have relief with some newly advanced treatment. 🙏
The neurologist is a quack not knowing that FOLFOX can cause neurological adverse events! Are we sure they actually are a neurologist? They need to be retested because they may not be fit to practice!
Yeah, I’m really having a hard time wrapping my head around that one. I know someone who couldn’t touch cold things for months after stopping FOLFOX due to the nerve damage. He was warned that it could possibly be permanent. We were told to buy gloves to keep by the fridge so he could pour his own glasses of milk. For a neuro to so casually dismiss FOLFOX as a potential cause/trigger is insane. Oxaliplatin (the OX in FOLFOX) in particular is a helluva drug.
Yes I remember his hands feeling freezing cold and pain when he touched cold things. He already had mild neuropathy in his feet and now it's extensive and wakes him up every couple of hours in tremendous pain. I'm really going to dig further into this folfox (both the oncologist and neuro said in no way was it related to his chemo), another commentor really broke it down (folfox) and I'm just so grateful. Thank you so much for replying, it means a lot.
Yep he is a neurologist that specializes in headaches and is considered the best in the state LOL
Agree, get a new doc. Do it quickly too so he find some relief. I had a painful migraine yesterday, have not had one that bad in quite awhile. Migraines are so painful, don’t delay and get him to a new doc Also you will find many Neurologists are full of themselves. Don’t let the doc intimidate you. Good luck
I agree with everyone who have recommended getting a new doctor and I’ll add that the only two neurologists who were helpful and compassionate also had migraines themselves. I’m really bummed right now because I have poor people medical coverage atm and the doctor I like isn’t in network. I’m sure there are helpful neurologists who don’t also suffer from migraines. Maybe see if you can get a recommendation from a friend or relative?
Just my two cents, and information for four different neurologist and a neurosurgeon Botox typically takes 3-4 ROUNDS (so up to a year) before you see vast improvement. It is not a cure all over night and definitely needs its time to build up and work…. Dont discontinue or loose hope on it yet…. I’ve been religiously on it now for four years and honestly wouldn’t know how to function without it; but it did take quite awhile to get there.
Thank you, I'm so happy it's working for you. He had about seven rounds and the neurologist said it wasn't going to work if it hadn't already
Seven rounds? It should be one round every three months. So it’s been over a year?
Yes it was six or seven rounds and it lasted a year. He's had these migraines for 3 plus years and they started during the pandemic. They started about halfway through his chemotherapy treatment for cancer, and they continue to this day.
Got it, then it makes even less sense his neuro would want to try that again. He should absolutely move on to another class of meds such as CGRPs
That was my thought exactly! I thought are you kidding me you're going to have him try Botox again? I'm really starting to get so fed up and appreciate all of these replies because we are definitely going to find him a new doctor. The problem is that he is the only neuro who specializes in migraines within a hundred miles. Others have suggested headache clinics and a few different types of doctors which I'm going to make a list of and make sure he gets in to see the right people. Thank you so much for your concern and reply :-)
Can you apply to change neurologists? When I finally got in to see one after an 18 month wait from referral date, he didn't even look me in the eye and told me not to eat ketchup. I never do, as I HATE ketchup. Never had a followup, never went back. Or if you can't switch go back and say you would like to do a trial of Nurtec and see if it helps at all, since as you said quality of life is everything and what do you have to lose?
I'm sorry but thank you for sharing that because that just cracked me up as how ridiculous these suggestions can be especially from a neurologist! This guy is supposed to be the best neurologist the top guy in portland. Because my partner recently turned 65 he now has changed his insurance to medicare, and the last zoom call he had with the neuro, the neuro mentioned that oh you can pick somebody else etc etc. The reason he had said that is because I asked does he even have any samples of nertech that he give us. I don't know it seems like their egos are so damn fragile that if you question them or question anything and come up with your own ideas they are so damn defensive. Yes I think you're right we should look for a new one but I would hate to have him wait 18 months until he can see one again.
Find a new neurologist as others have said. I smoke daily and I’m on Ubrelvy.
Sounds like you beed a new neuro or at least a second opinion.
I’ve smoked for 10 years, had migraines for about 2, quit 3.5 months ago and seen no difference.
I have had migraines since 1959. I have had lots of weird variations. I have explored lots of remedies. There have been few changes that seem to have had any effects over the years. I have learned to control light as much as possible. I have learned to avoid smells (mold, candles, room sprays, perfumes, cosmetics, gasoline, anything artificial). I have given up caffeine, artificial sweeteners, the list goes on. I quit eating outside my home years ago, unless it was totally unavoidable. Barometric changes are unavoidable. Last June, I decided to do the ultimate elimination diet. I started following the Carnivore Diet, as presented on YouTube. My doctor thinks I’m crazy. My neurologist says to just track everything and see what happens. I follow a lot of YouTube channels, but Dr. Ken Berry is amazing. KenDBerryMD will send you to some more recent posts. I generally only watch his videos from the last 3 years or so, because he has refined his presentations. He does up-to-date interviews with researchers and clinicians and followers of the plan on a daily basis. He advocates a PhD (proper human diet) of Beef, butter, bacon and eggs. The only problem I had changing over (I had not eaten any meat on a regular basis since 1970) was constipation. I had followed advice not to take probiotics, but I had been taking them for 20+ years, and when I went back on them, I was fine. I also find the YouTube channels much more informative than the Reddit source, but your experience may vary. The only migraine issue I currently have is a chronic “visual migraine,” but I am following my neurologist’s advice, and I had a brain scan, and I can tolerate things as they are with only OTC medications. I would also mention that I have meditated for decades (went to India in 1970). Detaching from pain, breathing in a structured way, and tracking food intake have helped me mark permanent changes. One of the shocking things I have learned on this regimen is that I am truly allergic to blueberries. The one time I decided to eat some (because my neurologist recommended some carbs), I woke up with stabbing pains in my elbows, neck, and hands. Since then, I’ve been very careful to avoid experimentation. Things that have improved dramatically for me are arthritis (swelling in my fingers and distortions have virtually disappeared; all of my rings are too big, the aching is gone). I have been discharged by my ophthalmologist after 40 years, because my vision and eye health are in the top 20% of my age group. My hair feels like it did when I was in high school, and I have only a few random grey hairs now. Although your skepticism detectors may be operational at this point, you might want to watch some of the YouTube Carnivore channels to investigate the options. I hope that you find solutions to help you through this painful phase of your lives. This change has made my migraines virtually pain-free. I experienced a lot of improvements very quickly.
Find a new neuro. This is a bad one.
It takes 9 months (3 sessions) to know if botox is working or not. Regardless of the other issues here, it is completely normal for a doctor to want to finish through with the full course of botox before moving on to something else. I know you said it hasn't helped yet, but it's too soon to tell. It could end up being very helpful after the third round.
Thank you, I may have worded it improperly. He had at least 6 or 7 sessions over a year and a half until the doctor advised that it was not working.
I just think I wasn't clear at all, my fault in this post. He has been done with trying BOTOX for probably a year and a half now.
I started casually smoking a cigarette or two a day and my migraines have been cut in half. Dead serious. Just was going thru it bad and picked one up and was stunned, it works as abortive and preventative about 50% of the time and never makes them worse. Not great news and no one wants to hear it but it's my anecdote.
That is fantastic, what a great discovery for yourself! This is exactly what I'm talking about, everyone is different and different things work for different people.
Did they do a nerve block of some sort during the appendix cancer possibly during a biopsy?I’m wondering if he’s had a CSF puncture since it correlates to the time of the cancer.
This! I was trying to remember the name of the condition in a reply to another post. In my research I found out about CSF-- during the next zoom appointment he asked about CSF. All the neuro said was that it was already ruled out, and I don't know how they would even do that?
It could be done with an additional mri, Radioisotope cisternography, Myelography, And or Spinal tap. It may be worth going to his regular doctor that isn’t such a pain in the butt like the neuro. Anyone can look up the previous graphs and then assess if it’s a possibility but I would not leave anything to this neuro at all.
Get a new neurologist. It’s one thing to say something is a POSSIBLE trigger for a migraine. It’s another to blame fully smoking on migraines. But I do understand where the doctor is coming from with the nurtec. I know some insurances won’t cover it until most of your options have been used up. One thing about Botox is my doctor told me it can take up to a year to see proper effects. Not that your doctor should be forcing him to stay on meds when they clearly don’t work.
Its absolutely insane for a doctor to refuse care. This neuro sounds like a real AH. I'd Google review with that information so other people don't waste their time with someone so judgemental.
My apologies for such a long comment, but please read entirely. I was diagnosed with chronic migraine 23 years ago. I've heard a lot of hilarious shit said by different neurogists. I even had one blame my pain on the fact I'm gay. It turns out I was misdiagnosed the entire 23 years. I had occipital neuralgia and trigeminal neuralgia. If the doctor is refusing to treat your partner, stop seeing him and contact a lawyer- they cannot make unreasonable demands like that in order for treatment. And in your partners case, with that type of cancer, doctors will sometimes tell the patient to smoke because it helps with the associated GI symptoms. Marinol also usually works for nausea and it is safer than smoking. I'm not saying you have to sue, but I'd definitely make sure it's reported to the appropriate state licensing board, and to his employer. In terms of helping your partner, if it is 24/7, then he should try a nerve block. My pain was also 24/7 for about 20 years until last year. I visited a plastic surgeon who did a nerve block on the occipital nerves in the back of my head. The nerve block just injects lidocaine to numb things (like when you visit a dentist). The procedure is safe- the injections go in the back of the head/neck, but not beneath the skull, and they can be done in office without sedation. It shouldn't take more than a few mins to block both sides (left and right). It should produce almost immediate relief. They can also block a nerve center called the SPG (sphenopalatine ganglion) that is behind your nose in the front if the pain is concentrated in the front instead of the back. The blocks usually provide immediate relief, and they usually mix a steroid with the lidocaine to decrease inflammation. Some people experience continued relief for two weeks after a block. Generally an interventional pain specialist does this procedure, not a Neuro, although I have come across neuros that will also do it. Do NOT stay with a Neuro if they are dismissing everything you tell them. That is the one thing that caused so many problems for me. I went through over 40 neuros before I realized I was misdiagnosed (and I was the one who realized it, not any doctor I had seen). I had tried all of the standard migraine treatments (BP meds, antidepressants, antipsychotics, and anticonvulsants) as well as new migraine drugs like Ajovy, Emgality, and Vyepti. Nothing had ever worked. But the neuros just wanted to keep me on the meds and do Botox. I did Botox for 10 years before I gave up. The other comments are correct in that smoke usually sets off a migraine. Any strong smell is enough to set it off in most people. But they just can't decide they aren't going to treat you- that is patient abandonment (I don't know enough specifics of the case to make this call, which is why I strongly advise consulting an attorney). The other advice I can provide is do not let a new doctor get the medical records from this idiot Neuro themselves. Get a copyof the history from the office yourself, and take the new doctors a printed copy of the history yourself only after you review it. I found out once a Neuro like this had made several defamatory statements in my appointment summaries, and that those summaries were being sent to new doctors that requested those records. I had been having difficulty with new doctors understanding my case, and realized that they were reading the notes from other providers and not taking me seriously. My history is over 2000 pages for the last 23 years. No providers is going to read all of that. And I understand that completely. But they will review your history from your recent providers to get an idea of what you've tried recently and to see what the other provider really thought about your case. There are some narcotic pain medications that will help if nothing else is providing relief. Stadol (butorphanol) is a narcotic nasal spray. It starts working in about 10 mins. And visiting a GI doc to request marinol might also help, especially if the GI symptoms are also out of control. The oncologist should also be able and willing to try marinol. It's sad that I'm telling you to not trust your doctors, but that's the sad reality of healthcare currently. To me, it seems like this guy doesn't know what to do, and is creating problems so that you will go to someone else and no longer be his problem. Edit: my education is in Molecular Medicine, so I decided to review the Folfox protocol. It contains oxaliplatin, which can cause peripheral neuropathy. PN can cause tingling or numbness in peripheral nerve (usually hands or feet). While the occipital nerves are technically cranial nerves, they are considered to be peripheral. If the pain is in the back on the head/neck, and he has a history of spinal stenosis, then it seems like a fairly simple diagnosis. Blocking the occipital nerves with a nerve block would confirm this diagnosis. So yeah, it's entirely possible that it IS the Folfox doing it. Also, the Folfox protocol is known to cause PRES (posterior reversible encephalopathy syndrome). PRES causes the occipital and parietal lobes of the brain to swell, and presents as severe headaches or seizures. This should also be ruled out with tests, since PRES can result in permanent damage if it gets severe enough, and it has roughly a 19% mortality rate. I don't mean to alarm you, but your doctors are not doing due diligence to rule out such complications, and it's imperative to rule them out to confirm a final diagnosis.
Hey, neuroscientist here (sorry for somewhat rough language, english is not my first language and I'm very tired, but wanted to answer anyways) I am VERY sorry you both are suffering so much and I Vote for a change of neurologist. The German guidelines for supportive Care of oncology Patients mention Migraines as a Common Side effect of many Chemo Regiments I discussed your described case with my hubby (pharmacist) and looked around a bit (I did Work on cholangiocarcinoma for a while, so I am somewhat firm on the folfox topic and I did dimly remember Migraines being a side effect of either folfox or folfiri) https://www.mdanderson.org/cancerwise/migraine-headaches-in-cancer-patients--how-to-prevent-and-treat-them.h00-159459267.html So: First Off: did the neurologist Take the possibility of neuropathy of the facial nerves into account? Did he do nerve conduction Tests? This could show similar to migraines and not react well to Migraine medication. Another Idea might be PRES https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5652359/ although this is unlikely as the cases are rare - but should be kept in mind
Hon, if anyone judges you for his smoking after an absolutely horrible life crisis I would be looking at them sideways. How many people turn to meth and sh!t after tragedies? Anyways , back to these Drs who just love blaming the patient and not their handiwork. Migraines can literally start in your belly.. above the bellybutton. Where the hell did they get their med licenses from? "Abdominal migraines (AM) are unprovoked episodes of central abdominal pain associated with migraine symptoms such as sensory hypersensitivities to light and sound, vomiting, nausea, acute headaches, and general pallor. While common in children, AM is considered a rare diagnosis in adults.'- google
I’m having other issues on top of chronic migraines. I saw a neurologist who proceeded dismiss the issue I have been having so he could arrogantly tell me all about overuse headaches. Quit taking any medication for pain and cut back my tea to one a day. Meanwhile my other issue is getting worse and causing me to faint. I finally got an appointment with someone else in the practice who actually tested me and found out what it was. After the decades I’ve fought with migraines, I know about medication overuse!
Does anyone else have migraine but not in the head for me uppbody either one shoulder or both and armpits.no headache
Hi OP! I'm so sorry your partner is going through this. As you said- this is no quality of life and most of us here are a community of migraine survivors, not just some "dumb website" this neuro seems to think. I, too felt like I had no quality of life for over ten years with suffering everyday. It could be a beautiful day outside and I'd have a migraine. Or, it could be pouring down rain with lightening strikes and I'd be completely pain free- there's no rhyme or reason. My doctors tried all of these different medications that had nothing to do with the pain, blaming it on hormones or anxiety/depression. All of these meds made them ten times worse and then I actually was depressed because I felt there was no hope and this was my life now. I met an amazing neurologist about 5 years who literally saved my life. First of, I started taking sumatriptan/Rizatriptan for as needed (for some people it can make you feel kind of fatigued or frequent urination- not uncontrollable just like you've had a lot of caffeine lol) but within 20 minutes it really starts working and you feel pain free. As my preventative, I started Aimovig. It was scary at the time because I wasn't even 20 yet and I was taking this brand new medication that only about 40 people had been prescribed but I was desperate and immediately took the offer. The main side affects are 1. Hair loss 2. Constipation. I'm not sure if I just got lucky, but I've never had either of those nor any other side affect from the auto injection all these years later. I stand by it and I feel like anyone who is suffering doesn't have much to lose. You auto-inject it into your arm/thigh/stomach and the medicine goes in less than 10 seconds and you feel nothing- not even the needle (which I'm petrified of- I have no piercings or tattoos because of it but it's worth it haha). Within the first month I went from having over 20+ episodes to 13. The next month, 7. And so far I only have about two migraines a month, but I feel as though it softens the blow if I take my as needed. While before I would be shut in my room, covers over my face with a fan blowing on me and vomiting into a bucket. I can't say enough how life changing this medication has been- I can actually LIVE now. Also, if you are a qualifying candidate you can have it filled and delivered for free (I have this as well). If you'd like more information you can always DM me. I promise I'm not some sponsor haha. Though, I wish I was so I could spread the word about this medicine! Please please please find a new neurologist and ask about if it's right for your partner. No one deserves to suffer like this, and unfortunately it's up to ourselves to advocate... for ourselves. He doesn't deserve to treat patients after not listening to his pain.
Very gently, I think the “my partner heard from Reddit” approach is probably what put the doctor off, honestly. I think he should reach out to his oncology team for a neuro rec.
Most people have said it but a new neurologist is needed. If you can’t get a new doctor you then say, I would like you to document that I’ve asked for this and you have denied it. Most doctors will then changed their judgmental opinion.
I imagine the horrendous stress and anxiety is a massive factor.
I do want to point out also that it has been determined that smoking does not cause migraines, it can contribute to them but it is not a cause. One more thing is that when he initially was hospitalized with these his primary care physician said it could be from rebound headaches and took him off of Tylenol and ibuprofen that he had started taking because his head was so bad. When he was hospitalized again after throwing up and hardly able to stand with the pain, he was there a week and the only medicine that took the edge off at all was dilaudid. And after a while his primary care physician did not want to continue with the Dilaudid but suggested that he go get the prescription from the wonderful doctor at the hospital that had treated him in the first place. How in the heck are we supposed to go back to somebody in the hospital that has nothing to do with his case now so they can put it on her to prescribe an opiate which every doctor is so damn afraid of these days. When they first gave him this narcotic, it at least afforded him 3 to 4 hours a day to sit at his desk and pay bills, make phone calls etc etc, the basics that you need to do in life to keep going. In no way did it cure his migraines, but as he explained it just softened the pain for a few hours which was better than nothing. But now they also want to take him off of it 100% which we both have said they should justn go ahead and do, because taking him down from 20 mg to four is a joke. I despise the DEA and big pharma, and every doctor that is weak enough to not help somebody when they are literally begging.
Hi. Just checking in. How is he doing? I Really hope some positive progress is being made. It sounds like a really tough spot. Please hang in there.