New Symptoms For Me

[EarthMother]

Hello Pots Friends,

A few weeks ago I began getting some facial pain (burning sensations around my upper cheek bones.) Saw the Doctor(s) and was referred to a neurologist which will be coming up in the next couple of weeks.

Then as the symptoms morphed I noticed that I would have these intense periods of shaking -- visable stuff, teeth chattering, arms shaking -- even the deep muscle of my thigh would shake and I have no idea how to do that one on my own even if I tried. I was aware of large bursts of heat (menapause?) but there was no sweating and the shaking didn't subside for sometimes 6-8 hours. Or it would stop for an hour and start all up again.

I feel like I'm straddling panic disorder (an old friend), POTS (another buddy of mine) and Perimenapause (a new friend come to join the party.)

Problem is I've been to ER more than I'd care to confess yet each times the symptoms hit I have no idea what I am suppose to do. Last trip out to hospital they started me on Mysoline (for tremors) and Ativan (for panic) ... too early to tell if they are working but I'm certainly a bit concerned that by the time I get to the neuro appointment I'll have a benzo habit that could be a challenge to come down off of.

Sorry long drama.

Any insight would be greatly appreciated.

~EM

[morgan617]

EM,

Sorry about what's going on! I get really bad shakes like that too, when I am not feeling well....well, when I feel really bad, well when I feel like death is imminent. They are terrible. My son and my sister do it too, and I know my sister doesn't have POTS, but I think Jake does. I find if I take in a big breath and hold it for several seconds, the tremors will let up for a few seconds, and as I continue to do it, they totally let up.

I don't usually feel anxious with them, but I'm not certain it isn't anxiety from feeling so rotten. It's much worse than the normal tremors I usually always have. My legs will actually bounce up and down if resting on the balls of my feet. Which happens a lot, because I am so short.

I have yet to see a neurologist who believes anything is wrong with me and I have done this for as long as I can remember, so figure it hasn't done too much damage yet, but it is very unsettling.

I guess at this point I could care less about the drugs I take, if they help, but that is a very personal decision. There are so few that do help me, I'm not going to turn them down.

I hope they find some answers for your cheeks, I have the same thing, only in my feet and not one person has listened to me on that one. Except Karyn on here. It feels like I am walking on hot coals, so I hope your cheeks aren't like that! Sorry I can't be of more help, I just always thought there was some genetic component to the shaking, as many of my family members also do it. morgan

[Guest tearose]

Oh EM, so sorry for this new turn of symptoms!

Do not underestimate the influence of those hormonal changes on your POTS issues!

It does seem like the neurologist is the right place to take your symptoms.

Trust your body. Do you think and feel the medicine is helping? Does it make you feel better, worse, or no change?

What are the chances you will suffer if you take it for a short time?

If you are better able to rest and avoid the ER on the medicine it may help you to pass the time until you get in to see the neurologist.

sending you healing thoughts dear friend,

if it helps to make you laugh... I accidently first read your closing line as "Sorry long dharma"

Maybe there is some innocent wisdom in that mistake!

with warmest wishes,

tearose

[MightyMouse]

I've had shakes like that following massive adrenaline surges. It's happened a few times to me, and it is so disconcerting and a bit scary when it does happen.

[runningshoe]

I have not been around much lately so your name is new to me. Hello! I have had facial burning off and on. I have gotten the shakes after a pots episode. I was healthy until I went (crashed) into menopause. I believe hormones played a major role for me. My experience with pots is that the symptoms are always changing and it makes you question yourself and then you come here and ask if anyone else has experienced what you have. The answer is usually yes! We are not crazy but our bodies are!

[EarthMother]

I have not been around much lately so your name is new to me. Hello! I have had facial burning off and on. I have gotten the shakes after a pots episode. I was healthy until I went (crashed) into menopause. I believe hormones played a major role for me. My experience with pots is that the symptoms are always changing and it makes you question yourself and then you come here and ask if anyone else has experienced what you have. The answer is usually yes! We are not crazy but our bodies are!

Lina, what did you noticed helped being hit by the meno-bus? I'm on BCP, starting taking Estrovan (black cohash) this week and extra Vitamin E. My diet is excellent ... accept for the hours I am shaking in heat in which case I'm pretty dehydrated. Any tips on what works?

[Guest tearose]

Do you use any electrolytes EM?

Especially in the heat and humidity, I find the packets of electrolytes like a little boost of fresh oxygen rush. It is maybe worth trying?

How are you doing today?

peace,

tearose

[EarthMother]

I stopped taking the Mysoline last night (doctor agreed it wasn't helping but was keeping me off my feet until 4 or 5 in the afternoon) so I am more "awake" today, which brings with it more tension and nerves unfortunately. I remember this kind of cycle the first time I crashed hard with POTS ... wake up feeling REALLY shaky and sick -- can't eat or drink much until after 12:00 and then by around 4 in the afternoon I feel almost "normal". Then I get a good nights sleep and the whole cycle starts all over again. Can't recall how long it lasted last time.

I did ask the Doc for IV fluids at home since I lost 10 pounds this week and I know my blood volume is low. But so far no word on when this might happen. Meanwhile I've been drinking electrolites ... some storebought unflavored pedialite and some I make up myself with a bit of the EmergenC, some powdered magnesium, salt and orange juice AND WATER.

Thanks TeaRose for keeping me in your thoughts.

~EM

[ajw4790]

Hi,

I had skimmed your original thread quickly earlier and missed that you were put on Mysoline or Primidone. I normally use the word Primidone, so it almost flew right past me what you were talking about. Anyways, I have been on it like a year and a half currently taking 200 mg total a day. I can not begin to explan to you how much this medication affected me for the first few MONTHS I took it while building up the dose to 250 mg a day. I had to go VERY slow, and if it knocked me out too much then I would back down and increase slower.

It has helped my tremor, but I was a zombie while trying to build the dose up, it was awful. It took EVERY fiber of my being to just move, then I also was struggling to stay in school at the same time, and was a zombie. I think I scared many, and there were times I almost fell right over. I would look over to the person next to me and say I may fall soon, catch me please! It was AWFUL! It still affects me some when I don't take it right or something like a reaction with the other meds. It is very powerful and is a serious affector of everything... appetite, I probably shouldn't have been driving, I also would wake up VERY confused. I would hear the microwave go off and go to the fridge to get the food etc. I gave myself many laughs at the stupid things I have done...

I don't know if that helps, but good luck, and taper off slow, or less dr says otherwise. Maybe you are on a low dose and not been taking it long.

FUN TIMES!

[summer]

I just always thought there was some genetic component to the shaking, as many of my family members also do it. morgan

Hi Morgan,

There is a neurologic movement disorder called "essential tremor" which is genetic. It is considered benign although the shaking can be signifigantly disabling. You'll find lots of info if you google it.

Summer

[MightyMouse]

Em, I hope you find some answers.

For me, I remember getting totally psyched up (happy) about my first real dinner date in college. However, I got the shakes about 30 minutes into the date, because my body was reacting to all that epinephrine/norepinephrine that I was pumping into my system. It also happens to me during massages at times, and has also happened during accupuncture. It's so disconcerting to realize how little control I have over my body (I'd really like to at least have the ILLUSION of being in control )

Nina

[EarthMother]

Thanks Nina. I've also experienced shaking for years and it never bothered me at all. I'd go to board meetings and shake like I was having fits and everyone accepted it was part of my POTS. I knew it would settle down in an hour or so and it usually did. Anytime I get excited (or nervous) my whole body tends to flair.

These shakes were different because there was this intense heat (burning) in my face and it lasted for up to 8 hours. Then they started coming each day even at times of peace.

It seems my autonomic system is having a real problem switching over from parasympathetic to sympathetic. I noticed it first about a month ago when I would get very shaky each time I rolled over in bed. And also as I was trying to lay down to first go to sleep. Once asleep, I sleep fine. Even still. And now as I wake up I do so with a 120 pounding pulse and shakes.

It doesn't feel like essential tremors to me ... but I'm hoping the neurologist knows something about POTS and can help put some of the hyperadrenic pieces together for me.

~EM

[morgan617]

EM, does your face turn red when it's burning, or just feel like it's red? I hope it's getting better. I know inflammation in the arteries can cause that kind of pain, but it's typically one sided. Hope you get some answers soon.

I always tell everyone to just ignore the shaking, but there's typically something physical going on when I do it. Have you done the tachy on waking thing before? I blame everything on meds, but am not sure if you are on something new, and if the med you stopped was a new one. If it is, hopefully that's the problem and things will settle down for you.

Thinking about you....morgan