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New to Board & Pots, Tremors anyone?


scamelo
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HI,

I am new to all this, 43 Year old female.

After having high blood pressure for over a year, While on vacation, I developed some swallowing problems, lost appetite, lost weight. I went off High blood pressure medications. Still have loss of appetite, but weight stabilized.

I have internal tremors most of the day for the last few months, so I went to the Cleveland Clinic to see what they could do as locally they found nothing and told me it was anxiety. Don't have a stressful life, except for these Internal tremors. (thyroid checked and its ok)

They did not do much for the internal tremors ( I had lots of- blood and urine work here in NJ), but I found out that I have POTS.

I had been eating low salt because of the High blood pressure. They know what me to eat salt.

I was put on Florinef and low dose of beta blocker lopressor ( which I was on higher dose before for high blood pressure. I started on them this morning. I also have fibromyalgia.

I am new to all this and its a little scary.

Any idea how long for me to feel better.

I can't imagine going from high bp to low bp in less than one year. Last year I was told to stay away from salt, now I am told to eat it. I also will be wearing support knee highs.

I had the tilt table test and an autonomic nervous system test along with an echocardiogram.

Any imput would be greatly appreciated. Anyone here have or had tremors internally?

Thanks

Silvia

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Welcome to the board, Silvia!

I was very "trembly" when I first became ill. It is rare that I feel trembly now, almost 5 years later. The beta blocker did help me with the trembling.

Hopefully the added salt will be of benefit, especially since you were on a low salt diet before. I also wear the support stockings, though I use the waist high ones.

It really is impossible to predict how long it will take for you to feel better. If you get on a medication that really helps you may begin to feel better soon (sometimes you have to experiment with several different meds till you find one that helps).

Now that you know what "got you" you will know how to fight it, and what will help and what to avoid. Hopefully these things will set you on the road to recovery. I was very sick with POTS at one point in my life. I now am back to work 3 days a week, I run DINET, I am on the board of another organization, I am on committees at work, I have a family, etc... I live a fairly normal life. Hang in there, things can get better.

Michelle

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I had slightly high pressure before I got POTS. Now its about 105/70 most of the time. Many POTS patients report swallowing problems at first. I lost weight when I first got POTS symptoms because I was scared into eating healthy, a habit I have kept.

I get action or intention tremors in my fingers which comes and goes. Enjoy the fact that you can eat salt again. I went through the same thing. My doctor told me to cut the salt and then when I got POTS I was told to add more salt to my food.

Being scared is normal with POTS, remember anxiety is a symptom. That anxiety stems from you worrying about having a more serious illness. We all deal with that fear at one time or another.

I went from a BP of 125/95 to 105/70 in a month. I was diagnosed with an EKG (deep breathing) as well. I did not have the tilt table because I do not have dramtic orthostatic hypotension.

You are going to go through a lot of emotions for a while but you will learn to accept and live with the condition, even though none of us want to.

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Silvia

I'm glad you found this board at this point in your diagnosis. It will help to know you are not alone and also that it is quite possible that you are going to get better. When I was finally diagnosed I was so sick I couldn't stand at all. I had terrible tremors and my blood pressure was all over the place, high and low. I was weak and exhausted all the time. I was truly terrified. After starting treatment of just a low dose of beta blocker and a low dose of SSRI, fluids and salt, I was well enough to return to work part-time in six months. And this is while caring for my baby. It has now been nearly a year since my diagnosis and treatment began, and while I am not fully recovered, I am functional to highly functional. Still not able to climb stairs and do some other strenuous activities. It seems with POTS that every patient's experience is somewhat unique. Best wishes, and don't hesitate to post any questions you have!

Katherine

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yeah, i shook a lot too and also had problems swallowing. both of those things are a lot better now. it took a few months for those symptoms to subside.

the shaking/tremor thing was really weird. it wasn't quite a tremor, it was more like my body was nodding back and forth all by itself. you know when people are going through a really traumatic event or mental disturbance, and they rock back and forth? kind of like that, only rocking very slightly. i would usually notice it when i was sitting in a chair. strangest thing.

also, a lot of times i would involuntarily twich, or an entire limb or side of my body would suddently jerk. i still get that. most disconcerting.

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Justin

Your description totally reminded me -- I also had that symptom of my body actually rocking back and forth--very subtely--involuntarily, when I sat. This is one of the symptoms that made me think my nervous system was degenerating or something. I also experienced a lot of involuntary twitching, particularly as I tried to go to sleep. So strange. These symptoms all gone now, or, for now.

Katherine

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Welcome Sylvia! This board alone has helped me to "feel better" more than anything I've done/tried in years. I have chronic fatigue syndrome (in addition or maybe because of POTS), similar in nature to your fibro and yes all of this *does* feel scarry.

My body still shakes when I've over done it. If I am working on the computer for too long (which may be 10 minutes on a bad day or 2 hours on a good day) then my arms start to tremble and the rest of me feels like I am going to collapse.

When I was much younger I had high blood pressure and also did the low/no salt thing .... but now I am popping salt pills three times a day and sprinkeling all my food. Strange how life works.

This site has so many wonderful suggestions. I use the full thigh high compression stockings instead of just the knee high ones and they do help especially on hard days. Sometimes I think they help because they keep my legs a bit warmer.

With CFIDS and FM we go through lots of different emotions. Longing to regain our remembered health, guilty we can't do for our family and friends like we did before, uncertain what the future holds etc. For me .... I try hard not to look too far into the future. I take great pleasure in "little things" and for the occasional "good day".

It's hard to stay "in the present" when we have a chronic illness ..... because after all -- we are sick and who wants to live in the NOW when the NOW is so dismal. But if you break it down to this tiny little moment, this little slice of life ... it is easier to handle. Try not to get caught up in the stories our mind tell us about how long we've been sick .... or what our next blood test might reveal ... or the bills ... or the worry ... or what will my boss say if ........

It's easy to get carried off into a mind made future. Welcome to the boards. You are among people who understand and care.

EM

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Hi

I just realized I made a big typo. I am only 43, not 49. Calculator and computer keyboards are reversed. So much for proof reading.

I just got a call back from a nurse at the clinic. First nurse said I had POTS, this one said it was borderline because my heart rate started out high 82, on the Tilt table test. went up to 102, which is high, but only 20 BPM. You have to have 30 to be POTS. My blood pressure did drop on the test.

I do have many of the symptoms so I will continue to post here. My Resting HR has been higher recently for some reason.

Thanks again

Silvia

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Silvia,

How long did they keep you standing on the tilt table test? Did they try it again with the IV and whatever that drip is they use to "force" symptoms?

Sometimes it takes 10 minutes before we notice the rapid pulse. And the BP doesn't necessarily have to fall at all.

Good luck and congratulations on gaining 6 years back! ;-)

EM

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Hi, I was on the tilt table probably for over 30 minutes standing. I know it was much more than 10 minutes. I got very hot and palms go sweaty.

Had an IV, but nothing was injected.

had an autonomic nervous system test and was told it was normal.

Echocardiogram showed signs of heart " really squeezing", tech said something about maybe not enough volume. I think my blood volume is low.

so far BP has stayed good with the extra salt, though I am not eating as much salt as they would want yet. Hard to go from no salt to lots of salt

Silvia

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Another thing to keep in mind with this illness is that symptoms can really vary from day to day, and that includes heart rate changes. Your body could have been having a better day than usual. A change in 20 bpm is something that should be suspicious as an indicator. Also, if you have already started the higher salt diet, that could already be increasing your blood volume to a point that you are not exhibiting as severe symptoms. Definitely need to talk to a knowledgable doctor about how to interpret this test result.

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Hi,

I had not started a salt diet when I took the tilt table. I am trying hard now to eat salt, but between lack of appetite and not used to the salt its hard. Also since Supposedly I don't have full blown pots I am easing into it. Got fitted for support knee high hose, but I needed a small and they only had med and large, so I have to wait.

Autonomic nervous system test was 4 phases

Laying down on table hooked up to BP machines, heart rate and such. Bp also taken on ankle as well as arm. I had some other device on my ankle made of lates as well, maybe to measure swelling?, not sure

First had to blow into a tube machine to see how it affected me

then had to stick hand in ice water for 2 minutes, that was hard. They told me if it was too painful I could stop. I lasted, boy it was painful

Third was injection of something to temprarily make my BP go up

Third was smelling something that made me BP go down

I was verbally told test was all normal

I had the tests done at the Cleveland clinic by Dr. Fouad. she is supposed to be an expert in this field, maybe not like Dr. Grubb, but I think she seemed to be good.

Silvia

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My wife has been diagnosed with POTS. She has actually been dealing with the symptoms for close to 15 years now, but only recently received this diagnosis. My wife also went through an autonomic nervous system test, but was slightly different. She went to Mayo for her testing/diagnosis. They have a team situation there where they have the cardiologists, neurologists, etc all work together. It was nice to go into an "understanding" environment instead of the normal responses that there isn't anything wrong. She has a pacemaker that was implanted in Sept 2001 to keep her heart from stopping (separate issue).

If your doctor is pushing sodium and liquids, you may want to look at pedialyte (the generic versions work as well).

Her heart rates range from 50 (can't go any lower because of pacemaker) to 250bpm at any given point in time. She was on a treatment plan with lopressor and proamitine (sp), but that became ineffective within a short amount of time.

It is a very rough disease and is an emotional roller coaster for the entire family. My wife is only 32 and has a hard time with the fact that she can't hold a job and has a hard time doing simple tasks on many days.

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