Does anyone else get these scary neurological attacks?

[Neunistiva]

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?

 

[Rossy191276]

Hi @Neunistiva

I get similar episodes without some of the neurological symptoms to you. I am also very severe and bedridden. Mine are more likely after over exertion, if I wake up cold, or emotion... I understand the difficulty in explaining the feelings but I understand mine to be some sort of autonomic nervous system reaction... it is hard to explain the feeling as it feels all systems are going haywire... I get tachycardia, severe body shaking, drop in temperature to 35 degrees Celsius, chest weakness and also shallow breathing and the feeling like I am having heart attack or similar, tingling, but then even when my heart rate returns to normal I still have these crazy ANS symptoms that can last for 45 mins or so and I am the same in that the thing that helps is clonazapem...I am also worried about getting addicted and am trying to lessen the dose at the moment... I also have propranolol but find that the clonazapem is the thing that works best but have a feeling that my body has gained tolerance for it and might be addidng to issues especially the breathing/ chest pressure feelings I get.

If you google dysautonomia and clonazapem you will find similar stories from people. I agree it is terribly scary and although I have had plenty each time they are still just as bad. I tried to upload a video of my shaking episodes but it would not upload...good luck

 

[Neunistiva]

@Rossy191276 Thank you for replying. I am sorry you have to experience such a terrible thing.

I would say that neurological symptoms are the main issue for me and the biggest problem in these attacks. I didn't notice any triggers. They just happen randomly. During them my breathing is normal and calm, it just feels like I have to put in a lot of effort to expand my lungs.

My attacks never stop without clonazepam and start as soon as it runs out, but I am positive that it doesn't contribute to the symptoms since I didn't take it for the first 10 days, so I can compare.

I read about dysautonomia a lot and the only type of it that fits my symptoms is POTS, but I have mild POTS - I never get dizzy, I never get lightheaded, I never get blurry vision. On the other hand I have never found these types of neurological attacks in POTS.

 

[Sushi]

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.

Have you also discussed this with your cardiologist? Looks like you did a sensible taper on the beta blockers but they are beta-adrenergic blocking agents, so they block adrenaline (could be a relationship with dysautonomia) and some people do get a rebound effect.

Were you taking klonopin also when you were originally on the beta blockers? Of course, klonopin is often difficult to taper off, so if you had stopped it too, that could be related. Just some thoughts.

 

[Gingergrrl]

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

This was my very first symptom that something was wrong in Jan 2013. I was sleeping and my HR went into the 170's (we checked it on a HR watch that my husband had at the time). It began happening several times per night and then switched into more traditional POTS upon standing, too. When my HR went into the 160's and 170's, my arms and hands would go numb and I would not be able to speak b/c gasping for air. I would have chest pain for days trying to recover. The only thing that stopped this level of POTS was Atenolol (beta blocker) which I still take five years later (and at this point, I assume that I always will). Midodrine is helpful for me as well.

I read about dysautonomia a lot and the only type of it that fits my symptoms is POTS, but I have mild POTS - I never get dizzy, I never get lightheaded, I never get blurry vision.

I had very severe POTS on TTT but I never really had dizziness, light-headedness, or blurry vision. I had tachycardia, shortness of breath, and if I pushed it, I got angina/chest pain.

On a side note, when I read your full description, have you been tested for SPS (Stiff Person Syndrome)? It's not an exact match but you describe some of the symptoms and the #1 med that helps it is Klonipin. Do you have an exaggerated startle reflex?

 

[Neunistiva]

@Sushi @Gingergrrl Thank you both for replying.

I did discuss it with my cardiologist but he didn't know. I often say I wish my neurologist and cardiologist would go for a cup of coffee The reasons why I think it's not beta blockers are: I've been on minimal dose of them to begin with. I tapered off very slowly for 4 months, and I've been off them for two and a half months before the first attack occurred. Now I've been on them again for 5 months and they improved pots and tachycardia but my neurological symptoms are unchanged or even worse. But I can't be sure.

I never took anything else besides beta blockers until the attacks started.

@Gingergrrl luckily I never had chest pain. I considered midodrine too but my blood pressure is normal. POTS and tachycardia seem well controlled with beta blockers now, and to be honest they were never an especially disabling symptom for me. It is this horrible neurological issues in the brain.

I've never been tested for stiff person syndrome but I'm not stiff at all. My gait is normal and cold decreases as opposed to increses my symptoms. But you are right, there are some similarities.

Yes, I startle easily when someone slams the door.

 

[Sushi]

The reasons why I think it's not beta blockers are: I've been on minimal dose of them to begin with. I tapered off very slowly for 4 months, and I've been off them for two and a half months before the first attack occurred.

Yes, that makes sense. Have you asked the two specialists if they would be willing to talk to each other? It does seem to be a huge problem that doctors are often unwilling to put their heads together and try to figure out what is happening with one of their patients.

 

[mrquasar]

@Neunistiva You should get your thyroid levels tested. All of the symptoms you mentioned can manifest in hyperthyroidism. The thyroid controls your entire metabolism, so when it gets overactive, everything speeds up. Your thoughts race, you overheat, you get tremors and panic attacks, muscle weakness and pains, you can get pressure behind the eyes, your heart can race, you can feel breathless. Also you usually lose weight from the overactive metabolism. Incidentally, beta-blockers can relieve the symptoms but do not treat the underlying problem.

Obviously other conditions can cause these symptoms too, but with so much symptom overlap, I would definitely get your thyroid levels tested again to rule it out.

Good luck!

 

[Neunistiva]

Have you asked the two specialists if they would be willing to talk to each other?

I usually just tell them what the other said

You should get your thyroid levels tested. All of the symptoms you mentioned can manifest in hyperthyroidism. The thyroid controls your entire metabolism, so when it gets overactive, everything speeds up. Your thoughts race, you overheat, you get tremors and panic attacks, muscle weakness and pains,

I got extensive thyroid tests , including ultrasound, at the beginning of my ME/CFS and my GP test TSH every few months. However, I noticed some of the similarities you mentioned as well so I am looking at getting T3, T4 and fT3, fT4 tested again now.

It would be just a precaution though, because if I do have hyperthyroidism it must be an atypical one: I don't get panic attacks, I don't have muscle weakness, and I don't have weight loss with increased appetite (I just lost my appetite and once I regained it I started gaining weight right away. I am normal weight).

It seems beta blockers are supposed to mask the symptoms of hyperthyroidism which is definitely not the case for me.

But I'm ready to explore any avenues at this point.

 

[Gingergrrl]

The reasons why I think it's not beta blockers are: I've been on minimal dose of them to begin with. I tapered off very slowly for 4 months, and I've been off them for two and a half months before the first attack occurred. Now I've been on them again for 5 months and they improved pots and tachycardia but my neurological symptoms are unchanged or even worse. But I can't be sure.

That makes sense from the time-line and everything that you described.

@Gingergrrl luckily I never had chest pain. I considered midodrine too but my blood pressure is normal. POTS and tachycardia seem well controlled with beta blockers now, and to be honest they were never an especially disabling symptom for me. It is this horrible neurological issues in the brain.

My BP was around 80/50 for 2-3 years no matter what I did. I have been off and on Midodrine (at various doses) since the end of 2014. There were times that I thought it really was not helping but when I stop it or miss a day, I notice immediately that my breathing is worse (regardless of the number on the BP cuff). My doctors felt it was increasing core blood perfusion to my heart and lungs when I stood up which makes sense to me. But it doesn't sound like it would be the right med in your case.

I've never been tested for stiff person syndrome but I'm not stiff at all.

I was not stiff either but I had an incredibly exaggerated startle response, plus the autoantibody (anti GAD65) that correlates with SPS. When I was startled, my muscles would experience episodes similar to SPS, with one single episode that might have been a startle seizure (but we do not know for sure). This all stopped with IVIG and my muscle tone is normal and my muscles stronger now and insane startle reflex is gone about 99% of the time.

I got extensive thyroid tests, including ultrasound, at the beginning of my ME/CFS and my GP test TSH every few months. However, I noticed some of the similarities you mentioned as well so I am looking at getting T3, T4 and fT3, fT4 tested again now.

I have Hashimoto's (which is hypothyroid but can include episodes of hyperthyroid) although I never felt that this played a big role in my case. I take Armour Thyroid for this 1x/day in morning.

 

[Crash Davis]

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?

Oh, absolutely. Other than the fatigue, this is a top 3 worst symptom for me and actually it is worse than fatigue because not only is the experience unpleasant for me, it is guaranteed to lead to 2-3 days of PEM, intense brain fog, apathy and some other lesser stuff. It usually happens to me about 1 hr after I nod off. I describe it as fire or electrical shocks running down my arms and legs, sweats, tach, confusion, balance issues when i get up.
In 2007, I was prescribed Lamictal/Klonopin for tinnitus that had reached the point it was pushing me to the edge (btw, this works well for tinnitus---Lamictal directly reduces the 'seizures' in the ears hair cells, Klonopin reduces the stress response to the sound, which can feed the cycle if it is bad enough).

Anyhow, as a miracle 'side effect' of this med combo, these attacks stopped and the only time they have returned since then is the 3 occasions that I decided to stop all meds....usually 7-10 days afterwards I would have one. I seriously doubt I would have been able to maintain employment this long had those attacks not stopped. It makes me wonder if there is some sort of weird seizure mechanism at play in all this with some of us.

The burning in your legs could be sciatic nerve pain or something related. I think our nerves are inflamed a lot. Despite the night time attacks going away, I still have moments of burning skin type pain usually along the tops of my forearms, the backs of my hands, sometimes the top of my head (scalp), and the backs of my arms. Numbness on the ring and pinky fingers of each hand sometimes related or unrelated.

 

[bjl218]

A common thread in this forum seems to be altered vitamin/mineral status especially B vitamins. Have you had your nutritional status checked using an Organic Acids Test or NutrEval? Deficiencies in B vitamins can definitely lead to neurologic symptoms. Traditional docs will typically only do serum testing which often does not uncover a functional vitamin deficiency.

Drugs like Lamictal and Klonopin can often cover up these types of difficult-to-explain neurological symptoms. But when you stop them, they symptoms return.

Burning sensations (neuropathies) in your arms (especially forearms) could also be a symptom of carpal tunnel. Wearing wrist braces at night has helped me a bit with this. I have a tendency to bend my wrists and form my hands into claws when I sleep and the braces stop me from doing this.

 

[Neunistiva]

plus the autoantibody (anti GAD65) that correlates with SPS. When I was startled, my muscles would experience episodes similar to SPS, with one single episode that might have been a startle seizure (but we do not know for sure)

I should look into that autoantibody. I just jump into the air when I get startled.

it is guaranteed to lead to 2-3 days of PEM, intense brain fog, apathy and some other lesser stuff. It usually happens to me about 1 hr after I nod off. I describe it as fire or electrical shocks running down my arms and legs, sweats, tach, confusion, balance issues when i get up.

It's incredible what this illness is doing to us. It doesn't really sound that similar to what I have, but I am amazed at the range of symptoms we can all have. I'm really sorry you had to go through that.

I seriously doubt I would have been able to maintain employment this long had those attacks not stopped.

Since the minute I had the first attack I lost the ability to use the chamber pot on my own, to brush my own teeth, to look at screens... My mother had to quit her job because I can't be alone for one minute. I don't understand why my attacks are so disabling.

Have you had your nutritional status checked using an Organic Acids Test or NutrEval? D

Those are not available in my country. However, I did have all the B vitamins checked, as well as homocysteine and they were all fine, plus I experimented with different combinations of vit B supplements.

Klonopin can often cover up these types of difficult-to-explain neurological symptoms.

I wish it would cover up some symptoms for me already

Burning sensations (neuropathies) in your arms (especially forearms) could also be a symptom of carpal tunnel.

Mine are in legs

 

[pibee]

how are you @Neunistiva ?

Have you managed to do some tests?
most hospitals do anti-GAD65.
I was impatient and payed it 30€ in Breyer (Zagreb), in case you need that info!

 

[sunshine44]

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?

yes dealing with similar situation which began in February, subsided more after i went in wheelchair then came back horrifically in August and i staved off ativan for a month but finally caved after so many er trips and a hospitalization. People keep saying they are panic attacks in night...NOT panic attacks, i have had those....these are from the depths of hell. I am still working on stabilizing. Having alot of muscle twitches and spasms in my gallbladder liver area which makes thigs even more complicated.....have you had any success with stabilizing more? I hardly even know my name or what planet i am on during these episodes....there are no words to describe the horror. I hope you are better now.

 

[Neunistiva]

how are you @Neunistiva ? Have you managed to do some tests?

Still pretty much the same, fighting to keep it under control with medication and compression stockings. I did very extensive thyroid tests and all came back normal, but I intend to repeat them soon just in case.

most hospitals do anti-GAD65.
I was impatient and payed it 30€ in Breyer (Zagreb), in case you need that info!

I had no idea hospitals do that. I have to check if blood can be drawn at home. Thank you

NOT panic attacks, i have had those....these are from the depths of hell. I am still working on stabilizing. Having alot of muscle twitches and spasms in my gallbladder liver area which makes thigs even more complicated.....have you had any success with stabilizing more? I hardly even know my name or what planet i am on during these episodes....there are no words to describe the horror. I hope you are better now.

These are nothing like panic attacks, none of the symptoms fit, not to mention that I don’t feel... well, panicked. After more than a year of this, if anything, I feel bored and fed up.

Clonazepam is keeping thing under control, IF I don't try sitting up in bed, standing, breathing too deeply, watching a moving GIF, video, flashing lights...
i.e. if I lie still and do nothing and no one touches me beta-blockers and clonazepam keep it under control.

However, I am slowly developing tolerance and have to keep increasing the dose which really bothers me. The last thing I need is to develop addiction to this damn thing, like I don't have enough problems already.

I agree the neurological "attacks" are horror. A few times I forgot to take clonazepam and 5 minutes later I was plunged into depths of hell. It really is indescribably horrific and with severe ME and surgeries I've been through I have a lot to compare it to.

 

[sunshine44]

yes very similar situation here except at first i did not feel panicked but now after so many all year long and swimming in i guess adrenaline i am dealing with alot of memory issues, irritability, constant anxiety and other awful things.

Same with ativan not the situation i wanted but these episodes began before ativan and ativan and beta blockers are the only things that kinda control them.

Really hope we get ease from these soon. Absolutely agree from the depths of hell.

Hugs. I am so sorry you are going through something similar. I hope and pray my cognitive abilities can stay through all these episodes because its been seriously taxing.

Drs have no clue they are calling them either ptsd episodes (not really), adrenal stuff or pots.