New Symptoms

[masumeh]

Hi all,

I have been experiencing new symptoms that are distrubing me because it feels more neurological than just POTSy. I'm trying to find a good neurologist in my area (difficult in Saudi Arabia). And when I return to the US, I'll get in touch with my POTS specialist (cardio) there. In the mean time, did anybody experience this before???

I now feel that my muscles are just deteriorating. Additionally, I get tremors when I try to push myself physically. Like, when I saw the dentist, my facial muscles started spasming (painlessly, tremor-like) because of trying to keep my jaw open. My whole lower face was twitching uncontrollably! Then I started to notice that it happens in my arm muscles, leg muscles (but that was easy to avoid and ignore because I can just stop whatever I'm doing and relax). Even my stomache muscles were twitching the other day!

Another new symptoms is that, when I have episodes, they're dominated by breathing problems. I also black out, feel pain in my head, get weak all over, etc. But now, in addition to the "normal" episode stuff, I feel that I am not breathing sufficiently. My chest feels like it's just going to sleep, and definitely it's not breathing in regular pauses and patterns.

Is this POTS, or something else?

Thanks

[Ernie]

Hi,

I have those symptoms and the doctors can't tell me if these are two seperate disorders or the same one. I have been asking doctors since 2003 when I was diagnosed with POTS and NCS.

[dsdmom]

Although I don't know much about this condition, have you checked out myasthenia gravis? I know it involves muscle weakness - particularly breathing muscles.

[anna]

Hello,

I am begining to think me and my kids have some weired sub set ANS dysfunction, as we all have an odd problem with breathing. We will be breathing quit normal then out of the blue it is like our brain has forgotten to tell our lungs to breath, then we tend to gasp for air and have to focus on breathing to get it back to some kind of normal rythem. It feels a bit like when we have these missed heart beats it feels like a breathing hicup. We still have not discussed this one with our Dr's!!!

Anna

[all4family]

Hi, I've had similar symptoms to this. I had a lot of issues with twitching in my face, and my tounge would click in my mouth all the time. I still get some leg twitching, and the face stuff if I'm feeling very bad. I also had severe muscle weakness and still do. I believe I was muscle waisting, because my urine was dark rusty brown. Most of these symptoms have improved since I got off of xanax, but had a second attack after getting off, and taking some other non related medications. I had breathing problems much like what anna is describing,but also accompanied by severe all over chest tightness, with my chest and arms, and frequently my whole body becoming numb almost dead feeling when I sleep, or lay still for very long. I usually have to lay in bed about 5 min after waking so when I stand up I can hold myself up. I don't know if it is pots? Or related to the medications for me. Or something else all together. I hope you get some help and answers for this, and am so sorry for your pain.

Suzy

[masumeh]

Thanks for the replies

It's always reassuring to know that I'm not alone, especially when I start to think that the symptoms are getting out of hand and potentially dangerous. The "myasthenia gravis" tip was interesting when I read up on it online...and my POTS doc did prescribe something to help strenthen my muscles that treats that disease...but I couldn't tolerate side-effects. I'll keep track of things, and hopefully update you guys when and if I locate a neurologist who can answer the question of whether there is another underlying cause for this weakness and breathing oddity.

Thanks again!

[dsdmom]

masumeh -

what did your neurologist prescribe to help? was it mestinon/pyridostigmine bromide? what were the side effects you had? I only ask because I take this as well but because of my sensitivities to medications I take the children's version - it's a liquid. That way you can take much smaller amounts and build up rather than taking the pill and trying to cut it. I just wanted to mention that option to you in case your doctor hadn't.

[ajw4790]

Hi,

I have an essential tremor (hands), and also get an orthostatic tremor quite frequently. This is normally in the legs. I also will get the random facsiculations (twitches) that you mention. I was told the ones I get in my abdomen are likely do to nerve "damage" after my appendectomy. I also with pretty much any of my muscles get a tremor with any sort of prolonged muscle contraction, like exercising, trying to hold something/pick up something that is heavy, or like you said keep my mouth open wide for long periods of time at the dentist. They do not understand and are always telling me to open wider etc. but it is very easily fatigued. For that TMJ disorder is also a part of the problem for me- I have no discs left in both TMJ joints and I am only 25.

I don't know if that helps?

[masumeh]

I'm updating on this post, started a long time ago. I finally found a good Neurologist in my area. He listened attentively to my history about POTS. He never heard of it before, but had me write down the name, my medication, and I also gave him this web address. He frowned when I told him that my convulsions during episodes was explained to me as a side-effect of too much adrenaline and shock after high tachy. But he didn't comment.

He ordered an EEG. I told him I did one in the beginning of the disease, 7 years ago. He said he wants another one because things might have changed since then. He also ordered an MRI of my brain.

Yesterday, we sat and talked about test results. He was nice, starting with the good news. MRI was normal. Then he moved to the bad news. EEG was abnormal and indicates epilepsy. This was strange to me, because I had always been told that a siezure means total lack of consciousness, but I can hear during mine. There is something called Partial Siezures (mine are complex partial siezures); and it's considered a type of epilepsy.

But now I'm really confused about how my POTS and my epilepsy relate to each other. REALLY confused! Like, I might be having Autonomic Siezures, which would explain my breathing problems. Almost any siezure is preceded by a period of sinus tachycardia and followed by fatigue that can last for months. Some AS have bradycardia. Like, what's POTS and what's epilepsy for a person with both???

My cardiologist did a TTT that showed 75% blood flow deficit to my brain when standing. Does that mean that I might be having siezures as a result of cerebral hypoxia??

Like, I'm just completely confused and need to talk to a neuro who IS familiar with POTS. I'm not going to find that in Saudia. But I'm gonna start searching for one in the US, near VA where my parents live.

Thanks for listening

[janiedelite]

Hi masumeh,

Wow! I'm glad you found a neurologist who was willing to follow up on your symptoms and ordered that EEG. Maybe he can help you get into a knowledgeable POTS doctor who will be willing to investigate? It sounds like you are being a good advocate for yourself. Good job, and I hope you get some answers soon!

Just a question, was the EEG done lying or sitting? I would assume that with POTS you'd have more hypoxia while upright. Did they do the EEG in both positions? Pardon me, but I don't know much about EEG's.

Janie

[firewatcher]

This sounds like a job for Vanderbilt! Would your doctor contact one of the doctors there? What about the UK, it is closer. I think the problem is going to be the autonomic overlap. Is there a good Epilepsy doctor there (there has to be!)

[mjan]

I'm updating on this post, started a long time ago. I finally found a good Neurologist in my area. He listened attentively to my history about POTS. He never heard of it before, but had me write down the name, my medication, and I also gave him this web address. He frowned when I told him that my convulsions during episodes was explained to me as a side-effect of too much adrenaline and shock after high tachy. But he didn't comment.

He ordered an EEG. I told him I did one in the beginning of the disease, 7 years ago. He said he wants another one because things might have changed since then. He also ordered an MRI of my brain.

Yesterday, we sat and talked about test results. He was nice, starting with the good news. MRI was normal. Then he moved to the bad news. EEG was abnormal and indicates epilepsy. This was strange to me, because I had always been told that a siezure means total lack of consciousness, but I can hear during mine. There is something called Partial Siezures (mine are complex partial siezures); and it's considered a type of epilepsy.

But now I'm really confused about how my POTS and my epilepsy relate to each other. REALLY confused! Like, I might be having Autonomic Siezures, which would explain my breathing problems. Almost any siezure is preceded by a period of sinus tachycardia and followed by fatigue that can last for months. Some AS have bradycardia. Like, what's POTS and what's epilepsy for a person with both???

My cardiologist did a TTT that showed 75% blood flow deficit to my brain when standing. Does that mean that I might be having siezures as a result of cerebral hypoxia??

Like, I'm just completely confused and need to talk to a neuro who IS familiar with POTS. I'm not going to find that in Saudia. But I'm gonna start searching for one in the US, near VA where my parents live.

Thanks for listening

Well sorry for ALL you have been going through. But I am curious about being told you have epilepsy. My husband had all kinds of seizures.. and complex partials. He could NEVER remember anything about them but he could talk or answer questions. There are some strange symptoms with those. Have they ever done a 3 day video EEG?

And I have these "episodes" when I get my autonomic symptoms which end up with me looking unresponsive..cannot move my arms legs. keep my eyes open or talk..BUT... I can HEART everything so I dont think I am unresponsive or not alert. Its a form of narcolepsy with cataplexy(not able to move arms or legs). Is this neurologist a specialist of epilepsy?

AND.. for my husband they could see on an MRI the lesions causing his seizures.

So.. I am just curious if you are getting the right information. It never ceases to me how you get different answers depending on who you see and what their specialty is.

APNEA is when you stop breathing. I have it at night (didnt know) and now during the daytime. All of a sudden I gasp to catch a breath not knowing I was not breathing. Told my new autonomic specialist. Its a part of the autonomic problem..and narcolepsy.

Good luck with all you are dealing with and keep posting. I too am going through yet more testing.

Warmly, Jan

[mancmm19]

I have the twitching problems as well. I have only been diagnosed with POTS 2 weeks ago and was thought to be having seizures for the past 2 and a half years. I have strange spasms in my abdominal muscles frequently that are not visible to the eye. My facial muscles also twitch if I am laughing too much or smiling too long...it's like they can't hold my cheeks in that position or something. When I start to feel sick, my teeth chatter, my breathing gets very shallow and my muscles being twitching and spasming. the muscle jerks and teeth chattering are visible but I also feel these internal "chills" in my abdomen that cause me to shiver. It feels like an electric current is running up my abdomen and shocking all of my muscles. It is not painful but is definitely weird! I too am going to associate this with POTS considering I never had this before I got sick 2 and a half years ago.

If anyone knows of a good doctor who knows a lot about POTS in the Long Island/NY/NJ area PLEASEEEE let me know. My neuro at North Shore LIJ doesn't know anything about it and neither does the cardiac electrophysiologist that diagnosed me after my tilt table. These forums are all that I have when it comes down to relating my symptoms.

[masumeh]

Thanks for your comments.

Thankful, Yes the EEG was conducted while I layed down. They hooked 24 electrodes to my scalp and forehead, then blinked a strobe light in my face after asking me to hyperventilate for three minutes. I felt the left side of my body convulsing, like it does when I have episodes (sometimes). But I was totally conscious.

I've been reading up, and decided that the next step is to see a neuro who treats POTS to assess my epilepsy diagnosis. That will take a few months, probably, because the closes listed on this physician list (Michele, you might check there for a doc in Long Island/NJ/NY area) is in Columbia, MD. I go to the US (VA) during summer vacation to see my parents. So I'll set up an appointment for that time.

I'll be sure to let you guys know how it went.

Thanks for all the support!