Neunistiva
Senior Member
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- 442
I've been bedridden for years with many severe ME/CFS symptoms that are difficult to deal with, but so far nothing has been especially scary. That has changed several months ago.
I'd been taking beta blockers for tachycardia but since it stabilized, with the blessing from my cardiologist, I slowly weaned off them. It went well and for several months I was fine with only slight increase in POTS.
Then one night when I was going to sleep I suddenly got this horrible sensation in my whole body and my heart rate jumped to 170 beats per minute. I never felt anything like it, thought it was a heart attack, my lips and fingers went blue, so we called an ambulance. By the time they arrived tachycardia has subsided but I got very strong myoclonus jerks. They lasted for 45 minutes until the diazepam the medics administered kicked in.
Since then I have these attacks often. The attack itself starts suddenly, but I can feel neurological problems for hours before it starts.
Sometimes it's tingling in the side of my cheek, or it's my hair standing up, or it's pressure above my right eye, or it's mixing words more than usual, but always it's racing thoughts, very bad physical feeling in the brain, that's not quite like electricity, not quite like pain, not quite like acid... it makes me lay motionless and wait for it to pass (it never does, Klonopin is the only thing that stops it).
I became completely unable to look at screens, and watch TV shows which I was able to do for about half an hour per day before.
If a full blown attack develops I get tremor, tachycardia, myoclonus, it takes a lot of effort to breathe (holter and blood oxygen are fine during).
When it started I lost my appetite, lost 15 pounds, my IBS worsened, I could not sit upright without getting horrible tachycardia, others had to bring spoon to my mouth.... What helped a bit was cooling my chest so I constantly kept my torso bare and freezing.
I restarted beta blockers and neurologist prescribed Klonopin (clonazepam). I still can't look at screens, but since then I got my apetite back, POTS improved a lot, and during the attacks my heart rate doesn't go over 120. However it is a very addictive drug and I'm trying to take the smallest dose possible, but constantly need to increase it to get the same effect. I'm really resistant to increasing the dose but have no choice because it's unbearable.
Few days ago, half an hour before it was time to take the next Klonopin dose, I got the attack and became completely confused and incoherent. I didn't know how to take the pill. I didn't even know what a pill is. Luckily my parents managed to stay calm and figure it out on their own.
I'm not sure if this is connected but around the same time I also started getting weird pain in my legs, different than usual ME/CFS aches. Sometimes it's very painful spot the size of a coin which hurts a lot when I press it, or it's a large area where it feels like my skin is burning, or it feels like shooting pain spreading all the way from my spine to my leg, or it's pins and needles in my toes which are going numb for days.
I had EEG and MRI done several times years ago and they were always fine, but I can't do them now due to the severity of my ME/CFS.
Has anyone ever experienced or heard of anything similar?
I'd been taking beta blockers for tachycardia but since it stabilized, with the blessing from my cardiologist, I slowly weaned off them. It went well and for several months I was fine with only slight increase in POTS.
Then one night when I was going to sleep I suddenly got this horrible sensation in my whole body and my heart rate jumped to 170 beats per minute. I never felt anything like it, thought it was a heart attack, my lips and fingers went blue, so we called an ambulance. By the time they arrived tachycardia has subsided but I got very strong myoclonus jerks. They lasted for 45 minutes until the diazepam the medics administered kicked in.
Since then I have these attacks often. The attack itself starts suddenly, but I can feel neurological problems for hours before it starts.
Sometimes it's tingling in the side of my cheek, or it's my hair standing up, or it's pressure above my right eye, or it's mixing words more than usual, but always it's racing thoughts, very bad physical feeling in the brain, that's not quite like electricity, not quite like pain, not quite like acid... it makes me lay motionless and wait for it to pass (it never does, Klonopin is the only thing that stops it).
I became completely unable to look at screens, and watch TV shows which I was able to do for about half an hour per day before.
If a full blown attack develops I get tremor, tachycardia, myoclonus, it takes a lot of effort to breathe (holter and blood oxygen are fine during).
When it started I lost my appetite, lost 15 pounds, my IBS worsened, I could not sit upright without getting horrible tachycardia, others had to bring spoon to my mouth.... What helped a bit was cooling my chest so I constantly kept my torso bare and freezing.
I restarted beta blockers and neurologist prescribed Klonopin (clonazepam). I still can't look at screens, but since then I got my apetite back, POTS improved a lot, and during the attacks my heart rate doesn't go over 120. However it is a very addictive drug and I'm trying to take the smallest dose possible, but constantly need to increase it to get the same effect. I'm really resistant to increasing the dose but have no choice because it's unbearable.
Few days ago, half an hour before it was time to take the next Klonopin dose, I got the attack and became completely confused and incoherent. I didn't know how to take the pill. I didn't even know what a pill is. Luckily my parents managed to stay calm and figure it out on their own.
I'm not sure if this is connected but around the same time I also started getting weird pain in my legs, different than usual ME/CFS aches. Sometimes it's very painful spot the size of a coin which hurts a lot when I press it, or it's a large area where it feels like my skin is burning, or it feels like shooting pain spreading all the way from my spine to my leg, or it's pins and needles in my toes which are going numb for days.
I had EEG and MRI done several times years ago and they were always fine, but I can't do them now due to the severity of my ME/CFS.
Has anyone ever experienced or heard of anything similar?