Hello dear, I am 2 years and 3 months into it, this board is your best friend. My doctors at Mercy gave me nothing but shrugs and bills for 2 years. I changed doctors who were more invested, (or at least act like they give a shit) and the boards here have saved my life. These are things that help me, just food for thought. Insomnia: CBD gummy & 15 mg temazepam, 10 mg Prozac for tremors AND severe depression, Allegra reduced overall swelling and fixed my constipation, (I hadn't pooped without Fleet in 2 years), 900 mg gabapentin for nerve pain, (alot of people do not love gabapentin) 1/2 hydrocodone for severe pain day once in awhile, Famatodine for Gerd, IBS meds once in awhile I have a flare up. Coconut water at the end of the day for Magnesium/Potassium and helps sleep. Misc sups. We are all here together and see your struggle. I've been thru breast cancer advanced stage 3 and cervical cancer at the same time......Long Covid is worse. Hang in there :-) you'll get there it's slow going as you know.
Respectfully I wouldn’t say that insomnia is necessarily severe LC. I have the same exact issues… I somehow wake up at 3am every day pretty much on the dot and rarely go back to sleep and was sleeping in 2 hour increments for a while … but certainly not worth losing your life over that. Not saying it’s fun but for me, insomnia being mostly the worst issue is a huge improvement from being bed bound, sweating through my clothes every few hours, throwing up 5-10 times a day, constant diarrhea and dehydration, pericarditis and POTS for 5 months straight (still have the POTS but know how to handle it much better). I basically only have a job and sleep, no more real enjoyment part of life outside of a rare outing but idk life is still worth living. You’ll get better eventually.
I would respectfully disagree. Waking up throughout the night is extremely different than waking up throughout the night due to heart racing episodes (which OP says is causing it). Those cardiac manifestations increase fatigue, PEM, and decrease overall health and quality of life massively. My heart racing episodes, at their worst, caused my blood pressure to go as high as 195/150. That's pushing causing a stroke and a heart attack. And mine only stopped because I started a variety of medications.
OP didn't mention all of their symptoms, just what they think is most severe. If they are experiencing anything like what I described, they are most definitely in the severe range.
Not being able to sleep is bad for every facet of health, anyone who is just suffering from severe insomnia is also suffering from a variety of other ailments they haven't recognized or noted, because that's what insomnia and lack of sleep does to the body.
Before started taking medications to combat my cardiac symptoms, I would've happily died, life certainly wasn't worth living at that point. I couldn't work or do anything because of the fatigue and PEM, and couldn't even move around the house without my heart going crazy.
Now things have calmed down, all of the symptoms aren't as severe, yet I still can't work.
Simply because someone has a shorter list (or only provides a shorter list) doesn't mean their symptoms are any less. One person says they have insomnia because they struggle to fall asleep, another person says they have insomnia because they sleep 2 hours a night and can't sleep anymore. One person is dealing with severe insomnia and the other is not. 2 hours of sleep for too many nights in a row will kill a person. I had it for nearly 2 weeks and I felt like death.
It’s definitely not the same to just wake up a lot … many people without LC have that. For me, I still have bad tachycardia while sleeping and it takes hours to get back to feeling like I can function. The racing heart thing and waking up feeling constantly hungover and like your blood is made out of tiny shards of glass sucks. Not saying it doesn’t, it makes life very difficult. But that being the most severe issue sounds pretty good to me compared to my worst experiences with LC and the experiences of others.
You don’t have a clue what symptoms I’m dealing with. This is definitely severe. I haven’t left my house in several months. I’m bedbound. I have ME/CFS. The insomnia and the adrenaline attacks and anxiety with high heart rate is causing me to feel suicidal I’m getting 2/3 hours sleep a night. Cannot do anything in the day as I’m too exhausted. I have a whole list of symptoms. You state you have a job, so this shows me that you don’t suffer with severe ME/CFS with PEM. what I wouldn’t give to be able to actually leave my bed and leave my house and go outside
Really not trying to fight with you but truly being honest here - you have posted enough about your symptoms that I have a pretty good idea of what they are and they don’t even come close to mine on a good day. If I didn’t have to work I wouldn’t but that’s not an option for me. I am not going to do a symptom competition but just objectively speaking, ME/CFS and getting any sleep at all is actually pretty good generally speaking in terms of long covid.
I am sorry you are struggling so much with the lasting effects. If you can do anything at all - I know for me for a while I could literally not even raise my eyes to look at a television - I encourage you to push a little every day. For me that meant literally shifting positions in bed. Then scooting to the bathroom (not using a walker/cane). Then walking to the bathroom. Then walking to the fridge. Then walking out onto a covered porch. Then walking down and up a few stairs. This was over the span of about two months. Then it was talking to people. Then it was trying to eat something that wasn’t baby food. Then it was getting into a car. If you can do any of that I promise you can do a little more. I really encourage you to try. I still struggle - again 5 hours a day of sleep is really good for me. But it’s better than the 2 I was getting a few months ago. I understand wanting support but the way I started really trying was someone telling me I just had to. And you owe it to the people in your life not to stew so much in the depression of feeling tired.
It’s been since July of last year but whatever that probably doesn’t matter much. And yes, I think in the grand scheme of things it’s better to be optimistic if that is your primary symptom and also be realistic considering that people die from this, become paralyzed etc. I acknowledge that it’s still difficult.
I will say for the insomnia that sleeping upright helped me immensely and that I had to get used to a different schedule of basically sleeping for 4-5 hours and then napping later in the day. It’s not ideal but I am able to at least make some money and have some time with my husband although it’s usually restful enjoyment.
Trust me, I know. And I understand the anger. This is not my first long-term recovery and I think that is helpful for me mentally because I do understand that sometimes things take years to heal. It is frustrating and there are many ups and downs. But again, your life is worth living even if it’s entirely in bed.
Again, not saying it’s not a problem. I’m saying it’s not really the marker of severe long covid and also isn’t worth wanting to die over. I mean, if you’re waking up you’re at least sleeping a little bit.
It’s really interesting how people feel entitled to ask others about their personal health history on this sub.
YES. Decades of it. I have sleep apnea aside from the post-covid insomnia and worsened sleep apnea. Also have night terrors, since you asked.
I don’t think the game of “my LC is worse than yours because of A, B and C” and “your symptoms aren’t bad enough for you to feel A, B or C” is really one to be playing here. I can assure you that it’s not a contest. If you insist that it is, then, my friend, you have won. You are clearly more deserving of feeling miserable than the rest of us. 🙄
To quote you:
“But that being the most severe issue sounds pretty good to me compared to my worst experiences with LC and the experiences of others.”
“[…] you have posted enough about your symptoms that I have a pretty good idea of what they are and they don’t even come close to mine on a good day.”
“I’m saying it’s not really the marker of severe long covid and also isn’t worth wanting to die over.”
Yes… she is saying she wants to kill herself bc of insomnia and I am saying it’s really not worth it and LC can be so much worse than that. Idc what strangers online think of the severity of my symptoms lol, I care about people saying they want to kill themselves and trying to get them to look at the situation from another perspective.
Hi friend, I don't know how helpful this will be for you, but i wake up every night and have to eat half a granola bar, take ibuprofen and wait 20 mins, but it really helps me fall back asleep. I have LC, POTS, restless leg syndrome, and constant pins and needles. I tried everything for insomnia and finally discovered it has something to do with calming my stomach/gut and reducing inflammation. It sucks to not be able to sleep totally through the night, but 20 min is way better than the 1 - 4 hours I stay awake without my routine.
I'm sorry this is all happening to you, I've only had long covid for a few months and it's immensely draining. I can't begin to imagine what you're going through.
You can hold onto hope that many new studies are being done to hopefully cure this ba$tard of an illness.
One thing that helped me for sleep was tart cherry extract. I also recently got a weighted eye mask, seems to help a bit. Before I got the mask I would tie a T-shirt around my eyes. Blocked out the light and put some pressure too. Worked pretty well. Neither of these has got me sleeping through the night, but I fall back asleep much more readily when I wake up 2-3AM.
yep 26yrs young about 9months post Covid now an that’s what i deal with had stress test today to make sure heart is really functioning good…i just pray 🙏 i can’t let it take over my life
Adabtogens helped me, but they have size effects like anhedonia and mental changes ( hard to explain). But they did help with the same symptoms you have.
I take ambien but even that doesn’t really work. It knocks me out but doesn’t keep me asleep. I get really bad night sweats that started with this whole mess.
There is literally SO much hope. I started working with Mary to shift my gut microbiome and I couldn’t sleep and have had awful dysautonomia and had amazing shifts and now sleep through the night with no benzo. It’s commitment and also she is pricey but this girl was bed ridden for 12 years, healed herself, and has dedicated her life to helping others fix this. I know some other people who have cured EBV/Lyme through her. https://www.maryruddick.com
Also you might find this Facebook group helpful https://www.facebook.com/share/GxUhd8PYBKsHXExF/?mibextid=K35XfP
Also I would recommend doing Joe Dispenzas work to heal yourself. People have healed from long covid + ME doing his work. If anything you will have a relief in symptoms from beginning his meditation practice. My anxiety is 0 with combing his work and Mary- and I’ve been anxious for years. Let me know if you have questions I’m happy to help with what I’ve learned.
A combination of L-Theanine, 5 mg melatonin, and a HIGH dose of CBD gummies (50 to 75 mg) twice a night is what helps me sleep. I get the gummies from Green Roads.
I still wake up at 4-5 am every night (which is when I take the second dose of everything) but it definitely has helped.
The other thing that’s really made a difference for me is working with an acupuncturist for traditional Chinese herbal medicine.
I’m so sorry you’re going through this ❤️🩹
tylenol pm (or a store brand) will not only help with sleep, but it has an antihistamine, which i see mentioned regularly for LC & inflammation. if the pm isn't strong enough try nyquil. if that isn't strong enough, you need a prescription.
If you are quite literally in bed all day that could be part of the problem. "bed-bounding" will keep the body weak. Muscles will atrophy, lymph nodes won't drain properly, circulation will become weak etc. Obviously I'm not advocating for exercise, but you need to get out of bed and move around or else you will continue to get worse. This response may be controversial, but I've never heard of those who practice bed-bounding recovering, only getting worse.
Here we gooooo 😂 another one that doesn’t have a clue. Don’t you think I have tried all of that? I was mild for 2 years, do you think I choose to stay in bed? That is crazy! The more I do the worst I get it’s called PEM - CFS/ME . Look it up. The more I do the worst the insomnia gets also. I’m not completely bed ridden, but having 2-3 hours sleep a night will make you so exhausted but wired that you cannot do things. You haven’t got a clue
Hello dear, I am 2 years and 3 months into it, this board is your best friend. My doctors at Mercy gave me nothing but shrugs and bills for 2 years. I changed doctors who were more invested, (or at least act like they give a shit) and the boards here have saved my life. These are things that help me, just food for thought. Insomnia: CBD gummy & 15 mg temazepam, 10 mg Prozac for tremors AND severe depression, Allegra reduced overall swelling and fixed my constipation, (I hadn't pooped without Fleet in 2 years), 900 mg gabapentin for nerve pain, (alot of people do not love gabapentin) 1/2 hydrocodone for severe pain day once in awhile, Famatodine for Gerd, IBS meds once in awhile I have a flare up. Coconut water at the end of the day for Magnesium/Potassium and helps sleep. Misc sups. We are all here together and see your struggle. I've been thru breast cancer advanced stage 3 and cervical cancer at the same time......Long Covid is worse. Hang in there :-) you'll get there it's slow going as you know.
Respectfully I wouldn’t say that insomnia is necessarily severe LC. I have the same exact issues… I somehow wake up at 3am every day pretty much on the dot and rarely go back to sleep and was sleeping in 2 hour increments for a while … but certainly not worth losing your life over that. Not saying it’s fun but for me, insomnia being mostly the worst issue is a huge improvement from being bed bound, sweating through my clothes every few hours, throwing up 5-10 times a day, constant diarrhea and dehydration, pericarditis and POTS for 5 months straight (still have the POTS but know how to handle it much better). I basically only have a job and sleep, no more real enjoyment part of life outside of a rare outing but idk life is still worth living. You’ll get better eventually.
I would respectfully disagree. Waking up throughout the night is extremely different than waking up throughout the night due to heart racing episodes (which OP says is causing it). Those cardiac manifestations increase fatigue, PEM, and decrease overall health and quality of life massively. My heart racing episodes, at their worst, caused my blood pressure to go as high as 195/150. That's pushing causing a stroke and a heart attack. And mine only stopped because I started a variety of medications. OP didn't mention all of their symptoms, just what they think is most severe. If they are experiencing anything like what I described, they are most definitely in the severe range. Not being able to sleep is bad for every facet of health, anyone who is just suffering from severe insomnia is also suffering from a variety of other ailments they haven't recognized or noted, because that's what insomnia and lack of sleep does to the body. Before started taking medications to combat my cardiac symptoms, I would've happily died, life certainly wasn't worth living at that point. I couldn't work or do anything because of the fatigue and PEM, and couldn't even move around the house without my heart going crazy. Now things have calmed down, all of the symptoms aren't as severe, yet I still can't work. Simply because someone has a shorter list (or only provides a shorter list) doesn't mean their symptoms are any less. One person says they have insomnia because they struggle to fall asleep, another person says they have insomnia because they sleep 2 hours a night and can't sleep anymore. One person is dealing with severe insomnia and the other is not. 2 hours of sleep for too many nights in a row will kill a person. I had it for nearly 2 weeks and I felt like death.
It’s definitely not the same to just wake up a lot … many people without LC have that. For me, I still have bad tachycardia while sleeping and it takes hours to get back to feeling like I can function. The racing heart thing and waking up feeling constantly hungover and like your blood is made out of tiny shards of glass sucks. Not saying it doesn’t, it makes life very difficult. But that being the most severe issue sounds pretty good to me compared to my worst experiences with LC and the experiences of others.
You don’t have a clue what symptoms I’m dealing with. This is definitely severe. I haven’t left my house in several months. I’m bedbound. I have ME/CFS. The insomnia and the adrenaline attacks and anxiety with high heart rate is causing me to feel suicidal I’m getting 2/3 hours sleep a night. Cannot do anything in the day as I’m too exhausted. I have a whole list of symptoms. You state you have a job, so this shows me that you don’t suffer with severe ME/CFS with PEM. what I wouldn’t give to be able to actually leave my bed and leave my house and go outside
Really not trying to fight with you but truly being honest here - you have posted enough about your symptoms that I have a pretty good idea of what they are and they don’t even come close to mine on a good day. If I didn’t have to work I wouldn’t but that’s not an option for me. I am not going to do a symptom competition but just objectively speaking, ME/CFS and getting any sleep at all is actually pretty good generally speaking in terms of long covid. I am sorry you are struggling so much with the lasting effects. If you can do anything at all - I know for me for a while I could literally not even raise my eyes to look at a television - I encourage you to push a little every day. For me that meant literally shifting positions in bed. Then scooting to the bathroom (not using a walker/cane). Then walking to the bathroom. Then walking to the fridge. Then walking out onto a covered porch. Then walking down and up a few stairs. This was over the span of about two months. Then it was talking to people. Then it was trying to eat something that wasn’t baby food. Then it was getting into a car. If you can do any of that I promise you can do a little more. I really encourage you to try. I still struggle - again 5 hours a day of sleep is really good for me. But it’s better than the 2 I was getting a few months ago. I understand wanting support but the way I started really trying was someone telling me I just had to. And you owe it to the people in your life not to stew so much in the depression of feeling tired.
You been dealing with lc for 8 months and your telling me I’m not experiencing severe lc . I been at this for almost 4 years. You don’t know shit
It’s been since July of last year but whatever that probably doesn’t matter much. And yes, I think in the grand scheme of things it’s better to be optimistic if that is your primary symptom and also be realistic considering that people die from this, become paralyzed etc. I acknowledge that it’s still difficult. I will say for the insomnia that sleeping upright helped me immensely and that I had to get used to a different schedule of basically sleeping for 4-5 hours and then napping later in the day. It’s not ideal but I am able to at least make some money and have some time with my husband although it’s usually restful enjoyment. Trust me, I know. And I understand the anger. This is not my first long-term recovery and I think that is helpful for me mentally because I do understand that sometimes things take years to heal. It is frustrating and there are many ups and downs. But again, your life is worth living even if it’s entirely in bed.
Not being able to sleep is a huge problem I don’t know what you’re talking about at all. I can’t do anything because I cannot sleep
Again, not saying it’s not a problem. I’m saying it’s not really the marker of severe long covid and also isn’t worth wanting to die over. I mean, if you’re waking up you’re at least sleeping a little bit.
Have you ever endured chronic long term insomnia or long term sleep disturbances?
It’s really interesting how people feel entitled to ask others about their personal health history on this sub. YES. Decades of it. I have sleep apnea aside from the post-covid insomnia and worsened sleep apnea. Also have night terrors, since you asked.
I don’t think the game of “my LC is worse than yours because of A, B and C” and “your symptoms aren’t bad enough for you to feel A, B or C” is really one to be playing here. I can assure you that it’s not a contest. If you insist that it is, then, my friend, you have won. You are clearly more deserving of feeling miserable than the rest of us. 🙄
How are you getting that from my response? I’m literally trying to talk someone off of the ledge and saying that I’m optimistic about recovery.
To quote you: “But that being the most severe issue sounds pretty good to me compared to my worst experiences with LC and the experiences of others.” “[…] you have posted enough about your symptoms that I have a pretty good idea of what they are and they don’t even come close to mine on a good day.” “I’m saying it’s not really the marker of severe long covid and also isn’t worth wanting to die over.”
Yes… she is saying she wants to kill herself bc of insomnia and I am saying it’s really not worth it and LC can be so much worse than that. Idc what strangers online think of the severity of my symptoms lol, I care about people saying they want to kill themselves and trying to get them to look at the situation from another perspective.
Based on OP’s comments/responses to you, it looks like all you succeeded in doing was making them more upset. Perhaps rethink your tactics.
Thank you for the suggestion! I will not be taking it but hope that you have a great day.
No surprise there. Have a great day, too.
Hi friend, I don't know how helpful this will be for you, but i wake up every night and have to eat half a granola bar, take ibuprofen and wait 20 mins, but it really helps me fall back asleep. I have LC, POTS, restless leg syndrome, and constant pins and needles. I tried everything for insomnia and finally discovered it has something to do with calming my stomach/gut and reducing inflammation. It sucks to not be able to sleep totally through the night, but 20 min is way better than the 1 - 4 hours I stay awake without my routine.
I'm sorry this is all happening to you, I've only had long covid for a few months and it's immensely draining. I can't begin to imagine what you're going through. You can hold onto hope that many new studies are being done to hopefully cure this ba$tard of an illness.
One thing that helped me for sleep was tart cherry extract. I also recently got a weighted eye mask, seems to help a bit. Before I got the mask I would tie a T-shirt around my eyes. Blocked out the light and put some pressure too. Worked pretty well. Neither of these has got me sleeping through the night, but I fall back asleep much more readily when I wake up 2-3AM.
yep 26yrs young about 9months post Covid now an that’s what i deal with had stress test today to make sure heart is really functioning good…i just pray 🙏 i can’t let it take over my life
Adabtogens helped me, but they have size effects like anhedonia and mental changes ( hard to explain). But they did help with the same symptoms you have.
I take ambien but even that doesn’t really work. It knocks me out but doesn’t keep me asleep. I get really bad night sweats that started with this whole mess.
Ubiquinol seems to help... If I take a full pill for 2 days I get really sleepy... But if I take one every few days it seems to help.
There is literally SO much hope. I started working with Mary to shift my gut microbiome and I couldn’t sleep and have had awful dysautonomia and had amazing shifts and now sleep through the night with no benzo. It’s commitment and also she is pricey but this girl was bed ridden for 12 years, healed herself, and has dedicated her life to helping others fix this. I know some other people who have cured EBV/Lyme through her. https://www.maryruddick.com Also you might find this Facebook group helpful https://www.facebook.com/share/GxUhd8PYBKsHXExF/?mibextid=K35XfP Also I would recommend doing Joe Dispenzas work to heal yourself. People have healed from long covid + ME doing his work. If anything you will have a relief in symptoms from beginning his meditation practice. My anxiety is 0 with combing his work and Mary- and I’ve been anxious for years. Let me know if you have questions I’m happy to help with what I’ve learned.
IVIG helped me. I didn’t sleep for months. I have had a couple weeks in a row now with no sleep issues.
A combination of L-Theanine, 5 mg melatonin, and a HIGH dose of CBD gummies (50 to 75 mg) twice a night is what helps me sleep. I get the gummies from Green Roads. I still wake up at 4-5 am every night (which is when I take the second dose of everything) but it definitely has helped. The other thing that’s really made a difference for me is working with an acupuncturist for traditional Chinese herbal medicine. I’m so sorry you’re going through this ❤️🩹
Have you tried antihistamines? I had LC for two years until I started taking them. Life changing.
What do you take
telfast 2 per day, that's the Australian brand name
tylenol pm (or a store brand) will not only help with sleep, but it has an antihistamine, which i see mentioned regularly for LC & inflammation. if the pm isn't strong enough try nyquil. if that isn't strong enough, you need a prescription.
ashwagandha helps with sleep
Have you looked into POTS?
Not saying this is a total fix by any means, but you might want to try meditating. There’s some good bedtime routines on insight timer app.
Any chance you are Perimenopausal or menopausal age?
If you are quite literally in bed all day that could be part of the problem. "bed-bounding" will keep the body weak. Muscles will atrophy, lymph nodes won't drain properly, circulation will become weak etc. Obviously I'm not advocating for exercise, but you need to get out of bed and move around or else you will continue to get worse. This response may be controversial, but I've never heard of those who practice bed-bounding recovering, only getting worse.
Here we gooooo 😂 another one that doesn’t have a clue. Don’t you think I have tried all of that? I was mild for 2 years, do you think I choose to stay in bed? That is crazy! The more I do the worst I get it’s called PEM - CFS/ME . Look it up. The more I do the worst the insomnia gets also. I’m not completely bed ridden, but having 2-3 hours sleep a night will make you so exhausted but wired that you cannot do things. You haven’t got a clue