Trembling and Shaking

[Deb]

Have any of you ever experienced periods of trembling, expecially the hands? And has it ever gotten so bad that you actually shake, like a seizure, except that you are fully concious of what is happening?

Before I was diagnosed with POTS, one of my symptoms was trembling. It started with two fingers, then moved to the other hand, same two fingers. Then I got to where my whole right arm would tremble some, and my right leg would jerk, rather violently. It happened mostly at night and would wake me up. Then a few weeks ago I started shaking violently. It almost always happened in the early morning hours while still in bed. Then I had an episode at work and they thought it was an epileptic seizure. I was taken in an ambulance to the hospital, and as soon as they heard that word "POTS" it was like I was no longer worth their effort to help. I was still shaking so the Neurologist on call got me in for an EEG right away. It turned out to be okay, so then it was blamed on anxiety and/or panic attacks (I'm sure many of you can relate to that). "We better raise your Zoloft" was the unanimous cry.

A week or so later I saw my Neurologist for a "routine" checkup and was actually listened to about the spells not being due to anxiety. She thought my midodrine dosage was too high and could have been contributing to the shaking. She was right. The day after I cut my midodrine in half (I now take three 5 mg. tabs a day instead of 6) I felt so much better. That was two weeks ago, and I haven't had the shaking since.

Have any of you had anything like that happen? Since the Zoloft (and Paxil before that) doesn't seem to have any effect on the trembling, could it be from the POTS or do I need to swith SSRIs again? Is there any relief from the trembling?

By the way, I tried a beta-blocker for about a week, and I felt like I was going to die.

Deb

[Guest tearose]

Hi Deb, I am sorry for what you are experiencing...I wish I had some more knowledge here to offer you, but the few times I have had the shakes so to speak, was after passing out or while being sick with something else. You just hang in here and you'll get some feedback from someone else! I'll hold on to the hope that it was too much midodrine like the neuro had suggested...feel better. Take care, tearose

[Aprilmarie52]

I have times when I'm really not doing well that I have tremors. My whole body shakes uncontrolably (kind of like shivering only Im not cold). It sometimes lasts for 20 minutes but it passes. I dont know if its just part of POTS or not. I only take florinef and zoloft, so I dont know about the medication. good luck finding a cause

[Dawg Tired]

I get tremors. Sometimes I can't hold onto the phone reciever. We got 2 phones with headsets. That is the most aggravating tremors. I also get tremors in my legs and can't walk. They certainly aren't like seizures but I used to be concerned that it might be an early stage of Parkinson's; lucky for me the docs at Vandy were able to rule that out.

[MightyMouse]

I know others who have the shaking episodes too. I witnessed a really bad one while at the NDRF conference a few years ago--a friend was sharing a room and her roommate had terrible shaking. Looked like a seizure, but it was just her hyperadrenic stuff.

Just a note about going to the ER. I never use the term "POTS" in a medical setting. I usually say "autonomic disorder." For some reason, the POTS acronym just sounds odd/funny and I think that many ER staff link it to chronic fatigue and also mental health issues. Whatever. Yet another reason I avoid the ER like the plague.

Nina

[MightyMouse]

BTW, I don't mean to say that chronic fatigue isn't a real disorder...just to say that most medical staff equate that particular disorder with "hypochondriac." And, if you're not a hypochondriac, then you must be mental.

Wow, I don't normally sound so negative! Guess ya struck a nerve with me--like you, many of us (me too) have had some awful experiences with medical "professionals".

Nina

giant sigh...calming down now.

[briarrose]

I had the Chronic fatigue syndrome discussion with an ED doc Tuesday night. It didn't go well and I think I walked away losing that round. But I've personally read enough documentation to convince me so I'm hunting down web pages and printing them to leave in his box as proof.

But most people don't believe in CFS, Fibromyalgia, POTS, etc.

I tried to find studies done on Midodrine that could suggest the shaking, but no luck so far. I'll keep at it. I believe anything is possible though! Everyone is different and react differently. I don't think it's out of the realm of possibility that it was the Midodrine/ProAmatine.

steph

As for tremors, I have them daily. My hands are almost constant and my legs can get weak when I'm extremely tachycardic.

[Michelle Sawicki]

I (sadly) second Nina on being careful with the names you use. I've found it better to leave the "nervous system" part out of autonomic nervous system. Too many people think it's some kind of mental/nervous disorder if you mention the word "nervous".

Most of the time I just tell people that I have a disorder that lets my veins dilate more than they should, so when I stand up they don't tighten like a normal persons would. If they are really listening and not looking too confused I'll go on to tell them that this causes there to be too much blood in the lower part of my body when I stand up, and not enough getting to my upper body...and that this in turn causes problems with my heart rate and blood pressure. Most people seem to be able to understand that.

I've had uncontrollable shaking too. I'm lucky in that a beta blocker seems to control mine.

Michelle

[Deb]

Thank you for your replies.

I've looked at the DINET website dozens of times since I was diagnosed with POTS, but I never noticed the forum before. I am so glad I found you because (like many of you) I've had some sad and frustrating days just dealing with the questions about my health. Everyone is so kind and considerate, but only my husband really knows what I'm going through. It's a struggle everyday just to try to put on the facade of my former self so that I'm not constantly being asked "how are you today?".

I was taken to the ER by my office mates and friends five times since November 12th. I work in a large medical center so having an ambulance come to take me to the emergency room which is in the next building was a big thing. Now I have Employee Relations talking about having to make special concessions for me. All I want to do is to work, but now I'm thinkin that maybe I shouldn't have come back so soon.

I was off for two months and was feeling great (not like my old self) but at least normal-like. Now I get so tired during the day, just like I did before I started any medications. I've read a lot of what others have posted and it sounds like many of you go through bad spells that last weeks and months. I've only been diagnosed for four months, is this what happens? a couple of months of feeling good and then a period of feeling poorly? Is that why so many of you seem to be not working, or working part-time?

Oh Yeah! I almost forgot to say that most of the times when I was taken to the ER, I wasn't able to speak. I have my medical history written out and carry it with me. When I have one of those really bad spells when I'm shaking, my speach gets very slurred and/or stuttery. I think that's probably a bit of anxiety, but each time it happens, it's almost like the first time. It's so scary. I keep telling myself that my heart is okay, but it feels like it might explode. So, of course, I'm always crying, too. Thankfully it doesn't happen real often. Most of the time I can deal with it, especially when my husband is around.

[scamelo]

I get internal tremors or what feels like electricial currents daily, most of the day. No dr. has figured out what its from. I have very mild pots and since I have been eating salt my BP has been fine and occasionally a little high once in a while. I am on lopressor 12.5mg 3 times a day. Ativan used to help with the internal tremors ( not visible on the outside), but I take very little ( 1/4 - 1/2 a .5mg table) for fear of getting addicted and it does not seem to help much.

Have tried anxiety meds, but can only tolerate them for a week or two as I start shaking more.

This is my worse symtpom.

[metoo]

Hello everyone! I have been reading the post for quite a while now but this is my first post.I am not officialy dxed yet,my Neuro (who thought I was crazy...I will be finding a new one as soon as I come back from Mayo) faxed all my records to Dr Low at the Mayo and Dr Low told him I had dysautonomia and needed testing.I just had to add my experience in using the phrase "autonomic nervous system disorder".I had been fighting with my insurance co to get a visit to Mayo approved ,they decided I should go to Duke or UVA instead.OK..I call and ask for the Neurology Dept at UVA ,got the appt secretary and asked what types of "autonomic nervous system testing" they do there and she repleies ....OH,you have the wrong dept. let me transfer you to psycharitary I had to explain that it was not type of nervous system,it is the one that controls heart rate and BP but she still wasn't sure what I meant.Now ,they may do them,may be great at them ,maybe she just wasn't sure what I was asking about but I got back on the phone with my Neuro and PCP and now my appt to Mayo is approved. I am going April 22.I will not be using the nerouus system part of it any more!

[MightyMouse]

I should say that I've had several episodes of shaking/tremors...mostly related to me being startled first or with large emotions, even happienss/excitement. The worst one happened on a first date in college when a young man took me out to dinner. He just thought I was shivering from the airconditioning in the restaurant. Other times, it's happened following being hyped up after having called 911. Dosen't happen to me often, but seemed to happen more when I was younger.

Deb, yes, most of us go through cycles of good and bad days..weeks...months...years. Mine seems to go in periods of a few days.

Nina

[Jackie]

I just wanted to post a site I found yesterday that looked really interesting about connections between CFS, IBS, autonomic problems, etc.

http://www.mind-body-health.net/

I think it is very interesting because I myself when I got sick last year, thought that it seemed like there was some quirk in my HPA axis because of awakening at the same time each morning early between 4-7 (?) to have diarrhea which is the time that the HPA releases all the hormones....later with calcium supplementation which caused me to have excessive thirst and urination which was like a diabetes insipidus-type syndrome my symptoms progressed to awakening at the same time drenched in sweat with my heart racing, hands and feet sweating profusely, and loose bowel movement, etc....then came all the extreme body aches and nausea, inability to eat, quick weight loss, and was just the beginning of the electrolyte inbalance and palpitations which progressed later to anxiety and panic attacks once they started me on anxiety meds, etc. The trembling problem I never had until they tried me on the dose of Lexapro and guess what...sometimes it is still there, usually not visible but inside like others describe and that is how I know it is time to take my Xanax. Talk about fear of meds. Anyhoo....

Interestingly, on this website it is theorized that chronic fatigue syndrome and fibromyalgia, etc., may have to do with a dysruption in the HPA axis and hormone secretion, etc.

I know I probably sound crazy - ? what else is new? but I really think I know my body and this stuff makes sense to me but yet without a degree in medicine I don't know how to put all the pieces together. I know how it all started...exactly as above..and I theorize that the dysruption in my body's ability to regulate fluids because of whatever reason when I took the calcium caused the POTS to present itself fully when I had only had subtle symptoms over my lifetime....in other words aggravated everything and threw me into a complete POTS flare.

I told my husband that someday, maybe 20 years from now they are going to know what to do about this stuff and it probably will boil down to something ridiculously simple like a shot once a month or something of some hormone or something and they are going to be shocked looking back that they had everybody taking all these meds we are on. It reminds me in a way of that one movie Lorenzo's Oil and I apologize I don't remember the name of the disease but it boiled down to a simple treatment but it took somebody taking time and effort to keep putting the pieces together until they unlocked the secret which was an easy cure once it was discovered what the body was missing/lacking, etc.

Anyway, check it out and let me know what you guys think. My doctor once mentioned during all this that I could have CFS because of a high EBV titer...like everything else though who knows and labels without definitive treatment is not exactly helpful. When are they going to get to the bottom of these disorders/conditions?

Oh, and everybody have a great Easter!

[ramakentesh]

aprilrose - i relate exactly to your discription - great to read it too