Neurological Signs

[Tobiano]

I am wondering if anyone else gets neurological symptoms during a severe episode/attack? During a really bad one, apparently my arms are stuck out in extension, hands are fisted shut, my neck is back in extension and my jaw is clenched. After I become more responsive, I experience tremors for up to a few hours and sometimes one side of my body is more involved than the other. I've been tested for seizures and the test was negative. Was wondering if this happens to others?

[khaarina]

I haven't experienced anything this severe, but when I feel really bad I get a lot of tension in my face (especially jaw) as well as in my neck and shoulders.

[Chaos]

Yes, I had similar reactions after my TTTs. I was more in a flexed pattern, rather than extended but very similar in every other way to what you described. In my situation, I was in tetany where the muscles are locked so tightly that I couldn't voluntarily release them or move out of that position for a long time. Those muscles were sore for a LONG time afterwards and my wrists hurt for months from being so tightly flexed. In fact, when it was happening I was a little freaked because I was thinking it looked like one of the postures that patients get into when they have a particular type of brain damage, but then I figured if I had that type of brain damage, I wouldn't be able to think about the fact that I had that type of brain damage so I was able to relax about THAT particular worry anyway. LOL Didn't make the tetany go away or stop the pain associated with it though.

When I inquired about possible causes for it, one of the research MDs suggested it was related to the cerebral hypoperfusion that occurs with a lot of POTS patients and possibly to hypocapnia as well I believe.

[Chaos]

I should add that docs at both Mayo and Cleveland Clinic all said that this was an atypical POTS reaction but my neuro thinks that if it was related to anything other than POTS something else would have shown up by now.

[POTLUCK]

Was the test for seizure done while you experienced that type of episode?

There are many illnesses which can cause POTS which might have neurological symptoms.

Regarding seizure, both seizure can cause POTS and POTS can cause seizures, or some disorders which cause low energy to the brain can cause both.

[Chaos]

Potluck- No tests for seizures were done nor recommended in my situation.

[E Soskis]

As a former ER nurse, I have witnessed many similar episodes in patients who suddenly drop their BP and lose consciousness. As the brain is suddenly starved of blood (oxygen), the body reacts by seizure-like activity - sudden stiffening, tremoring, and even drawing-up arms and arched neck. It does not usually last more than a few moments if it is related to a blood pressure drop. Once the body becomes prone, blood flow is restored to the brain and things get back to normal.

[Tobiano]

I've had an EEG test for seizures and it came back normal. ESoskis- thanks for the info! Makes sense.

[Charlotte1]

I experienced bizarre neurological symptoms in June 2012. The neurological symtpoms were terrifying as i did not know why they were happening. Episodes of slurred speech, collapses with not being able to respond verbally afterward, strange sensations in my head, amnesia at times, and Parkinsonian-type walking. Basically, it looked like I was always drunk. By October the severity of the neurological symtoms subsided and the cardiac like issues started to appear. Perhaps they only subsided b/c I learned by then that staying put on the couch could ward off symptoms. Even now, if I do too much either mentally or physically (I'm housebound now) such as type too much or try to play Scrabble or walk more than in the house, the weird symptoms will re-appear.

Lots of tests were done to rule out disorders with similar symtoms but MRI and other tests showed nothing abnormal. In November after another pre-syncope episode (I have also fainted a few times) ,I was admitted to a neuroloigcal unit for 2 nights and then transferred to an epilepsy unit where 5 days of 24 hr. EEG showed that i did not have seizures. Since they didn't know what was going on, they labelled me as having 'pseudo seizures' and suggested I seek therapy! Thank God I had recently started seeing an endocrinologist who knew about POTS and arranged for ttt'ing. POTS was confirmed early January 2013.

I did not have the body tremors you speak of but did and often still do have times of jaw clenching as well as other involuntarily muscle contractions, especially the traps.

[badhbt]

Charlotte,

I had the same symptoms in August 2012. It was so scary. I went through numerous tests......until finally the POTS diagnosis. I had my neurologist stumped.

[Charlotte1]

Badhbt - absolutely terrifying...for the entire family. Seriously, I thought I might go insane as there didn't seem to be any 'medical' reason for it. I wouldn't wish that time period on my worst enemy! Glad that part of the 'illness' is not experienced nearly as much anmore by either of us.

[jknh9]

I have seized while unconscious, but not to the extent you describe, Tobiano. To me, that sounds atypical, and I would not attribute it solely to POTS or ignore it. Those symptoms almost sound similar to ones that sometimes occur with brain inflammation, including some types of meningitis.

[Tobiano]

Charlotte and badhbt - I agree. It's very scarry when it happens, or when someone else describes it to you after.

I'm still on the fence about this one. I'll emphasize it again at my next appointment. I almost want to see a neurologist just to be cleared, but it sounds like some neurologists may be stumped (especially if there is no primary CNS cause). The battle continues...