Constellation Of Odd Neurological Symptoms

[Canadiangirl73]

I decided to label them all "neurological" but some might not fall in this category.

Since I've had POTS, I have had the following odd symptoms and was wondering if anyone else experience those as well and brought them up to their physician's attention. I personally chose to not mention it to my PCP since she always brushes things off as being part of dysautonomia or looks at me as if I were a talking unicorn

So here they are, in no particular order:

1- Burning muscles: my biceps burn almost constantly but the sensation increases while typing, holding something (even very light, like a phone), etc. The burning subsides over night but comes back as soon as I wake up. This feeling is strictly in my biceps, no where else.

2- Strange "motion" feelings:

a) I feel as if the floor sinks underneath me, should I be lying, sitting or standing;

When I'm lying down, I get this quick rocking feeling from side to side as if I were lying on the peek of a roof and going side to side extremely fast. This happens at any time during the day and oddly never when I'm falling asleep;

c) I also have these "choppy'' feelings in my head that resemble the pattern of a strobe light.

3- Inner tremors: they feel like strong shivers that start from my toes and go all the way to my head in a nano-second, yet I'm not cold and don't have goosebumps, they are actually inner tremors. This seems to happen after I've been more active,so I wonder if it's not related to adrenaline.

I did have CT-scans and MRIs of my brain as well as EEGs that all came back normal. However, I wasn't getting those sensations while I underwent the exams. I also do not take anti-depressants (I know that some people who take them and go through withdrawal can get brain "zaps" similar to what I describe under C). I never feel dizzy or faint when these sensations come on either.

Hope this doesn't sound too weird... Thanks.

[Rachel Cox]

Yes, I can relate to the motion sensations. I call it elevator head. Also when I lie down at night I have a sensation like I am in open space turning in giant somersaults. Like I am a whale swimming in the ocean. Never told anyone that one, so no laughing at my 'unicorn' speech okay! it calms down if I put one foot out onto the floor, but I can't do that for long or the foot goes numb.

[Guest Alex]

The burning muscles sound familiar - I get that mainly in my legs, but also in my upper arms, upper chest, intercostal and abdominal muscles - not fun at all.

Also the rocking feeling but only when I'm about to fall asleep.

Inner tremors - yes, only mine don't travel like yours do. One day it might be a leg, another time my chest (left side usually), or my arms, or even my whole body. Feels like a cell on vibrate mode.

Brain zaps, even body zaps - yes and yes - I'm suspecting klonopin withdrawal here.

My ct scan and mri were both fine as well, and the neuro I saw couldn't find anything wrong with me - he said that if my symptoms were truly neurological in nature I'd progressively get worse and I should be glad that my symptoms come and go.

I've started getting these symptoms a while (couple of months) AFTER I was diagnosed with POTS, so I'm suspicious of my meds. My dr doesn't agree with me though, but couldn't figure out how to help me yet.

I noticed you said you're not on any anti-depressants, any other meds that you're on that might be responsible? It might be worth a try mentioning these to your dr, eventually get to see a neurologist - just to be on the safe side.

Hugs,

Alex

[Katybug]

Burning muscles - yes, not constantly but relatively quickly whenever I try to do anything physical...even chopping veg. to cook

Floor sinking - yes, mostly when standing or walking but occasionally laying down

Inner tremors - yes, and I hate them cause I feel like I'm going to collapse

[southbel]

I get this odd sensation like if the floor just dropped out from under me; I describe it as that moment you're at the top of a rollercoaster and drop down that first big hill. Other times, I get the feeling I just got off a boat.

I get burning feet SO bad. I get a lot of pain and soreness in my thighs but do not have any issues in my arms and only occasionally do I get numbness in my hands.

I completely 100% understand the inner tremor thing. Hardest thing for me to describe to someone else. If I try to talk during a bad attack, I can't even talk normal - I have almost a stutter or something. I feel like my tremor/shaking thing starts in my core and then just goes out from there. I usually only get this tremor when I have a very bad POTS day and major tachycardia problem. It's about a 50/50 if I pass out from an attack of this nature.

I have brought these up to my doctors and most of them insist they can't all be related. I find that pretty unlikely since they literally all started the same day. My cardio understands it can be from my POTS but doesn't really know how to help with my other symptoms beyond the cardio related areas. He's really a great doctor and the only one I've found that even knows about POTS but I just wish there were more doctors that know about POTS and how to treat it. Oh and as a side note, one of my doctors tried to convince me that I unknowingly sprained my thigh muscle, thus causing the pain in my thighs, tachycardia, etc, etc. She kept telling me that I must be mistaken and the pain in my legs starts before my tachy incidents. I had to keep repeating over and over again that I get tachy first and leg pain after. That was easily the MOST bizarre diagnosis I had received thus far - she wanted me to stop my beta blockers and take 600 mg of Advil per day. Um no!

[~elizabeth~]

I think they are all related to a lack of oxygen in the blood due to low BP. The arm burning could be a variant of coat hanger pain, which mainly happens in shoulders but can cause burning pain in arms (particularly when raised) or calves. I reached to switch off a light this week and one simple movement triggered terrible pain in my shoulders, back and arm. I'm having awful problems with the 'floor swimming', again I think it's due to reduced blood flow to the brain affecting vision and balance nerves. I've been having terrible problems with double vision at the same time. When I checked my BP I found it has dropped significantly since I last measured (85/45 etc) it so I'm sure the onset of these problems is linked to that.

More on coat hanger pain

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1296807/?page=1