Hand Tremors Getting Worse

[yuliya]

I have noticed that my hand tremors are getting worse to the point where I am becoming self conscious about it. What could is be and has anyone found anything that helps?

[Christy_D]

I'm curious about this as well. My son's are much worse as well. The tremors are quite noticable now, when it used to be only if he held his hand out that you could see it.

Christy

[juliegee]

My son's too. The neurologist calls it Essential Tremor- apparently no biggee.

[abnel]

Hi Yuliya,

Both my husband and his mum have benign tremors and they both have some form of dysautonomia. I think tremors can be one of the symptoms of dysautonomia. It is genetic and runs in their family.

The severity of my MIL's tremors has waxed and waned over the years, worsened by stress, doing too much repetitive movement with her hands or too much strenuous work. My husband's tremors come out when he grips onto something too tightly for too long and does repetitive movement (ie mowing the lawn with a whipper snipper).

I hope that yours will calm down for you soon as it can be very uncomfortable and sometimes a bit scary, especially when they intensify within your body also and the hand tremors are an outward manifestation.

[Brye]

Hand tremors are getting worse for me as well. For me it's worse with stress. I struggle a lot during summer because of heat and my kids being home from school. I think it's stress that's making mine worse! Haven't found a way to control it. Hate it though, that's another reason I tell my friends about my POTS. I don't want them to think it's some type of withdrawal.

Brye

[yuliya]

My son's too. The neurologist calls it Essential Tremor- apparently no biggee.

I like how the doctor say no biggee, but it really feels like one to me. I'm sure if they were shaking like that all the time they wouldn't say that. I just constantly get stared at and people asking me whats wrong. It really makes me self conscious, and I wish there was a way to treat it.

[janiedelite]

We have an essential tremor that runs in our family as well. I've only noticed it since POTS began. Beta blockers can help this symptom (I know carvedilol really helped me).

[Brye]

My beta blocker has helped my hand tremors some too! If I miss a dose for some reason that's one of my clues I missed it.

Brye

[RockiesGirl]

Yuliya-

Mine are REALLY bad too. Sometimes people stare at me, but there is nothing I can do about it. I try to hold my hand down or lay on it but you can literally feel the shaking through me, if that makes sense. Mine are really bad when I am stressed or I have been standing for a while. If I don't find a place to relax my whole body kinda starts in.

Do you also sometimes get it in your neck? Or calf? Mine is not a prevalent in these areas but it is still there sometimes.

I'm with you...it drives me nuts and has gotten worse over the last 3 months. It also seems like anytime they do any testing it intensifies the problem and makes it worse. I thought it was worse on the Beta-Blockers but went off them for some testing last week....AAAARRRRRRGGGGGHHHHH, it was awful!! Friends are commenting that I need a 'sippy cup' jokingly and while I laugh, it hurts.

[RockiesGirl]

Also, this is why I posted a few weeks ago about Parkinson's. I was interested to know how many were originally diagnosed with POTS moved on to another diagnosis. Several people have commented that I look like a Parkinson's patient to them. I have asked about it, but really get no answers from the Docs.

BUT the neurologist I went to was awful...waiting for an appt. with a new one in August. Currently only seeing a Cardiologist (who is about the most wonderful Doc I have ever been to) and an immunologist/allergist, maybe they just don't know

[firewatcher]

"Also, this is why I posted a few weeks ago about Parkinson's. I was interested to know how many were originally diagnosed with POTS moved on to another diagnosis. Several people have commented that I look like a Parkinson's patient to them. I have asked about it, but really get no answers from the Docs."

I thought this too, and went to a Movement Disorders Specialist at the beginning of my diagnostic journey. He could tell by the amplitude (?) of the tremors that it wasn't Parkinson's. He did say that I had a tremor in both hands, both feet and my tongue.

Propranolol has helped this a lot for me.

[yuliya]

Yuliya-

Mine are REALLY bad too. Sometimes people stare at me, but there is nothing I can do about it. I try to hold my hand down or lay on it but you can literally feel the shaking through me, if that makes sense. Mine are really bad when I am stressed or I have been standing for a while. If I don't find a place to relax my whole body kinda starts in.

Do you also sometimes get it in your neck? Or calf? Mine is not a prevalent in these areas but it is still there sometimes.

I'm with you...it drives me nuts and has gotten worse over the last 3 months. It also seems like anytime they do any testing it intensifies the problem and makes it worse. I thought it was worse on the Beta-Blockers but went off them for some testing last week....AAAARRRRRRGGGGGHHHHH, it was awful!! Friends are commenting that I need a 'sippy cup' jokingly and while I laugh, it hurts.

On really bad days I have noticed tremors in my legs when standing. Most of the time only my hands are effected, the last neurologist I saw called it a postural tremor. I have no idea what that means or how to help it.

[dmadorin]

This was one of my daughter's first symptoms, which have escalated over the last couple of years. At first, you could hardly notice. Unfortunately, she gets the tremor all over, arms, legs, sometimes even trunk when it's really bad. Caffeine makes them worse, as does exercise. And, the weirdest part, for the last few months if she gets cold she gets strange twitching all over, almost like convulsing. Obviously not her favorite thing!

Does this ring a bell with anyone else?

[dmadorin]

Forgot to add, we also saw a neurologist who was also a pediatric movement disorder specialist, and she was basically stumped. Eventually called it 'enhanced physiological tremor' -- and have a nice life.

[louloutinks]

Yuliya

thats interesting as I have been getting tremors in my hands and lower back/butt upon standing. The only thing is is that I carry on trembling for a while even if I sit down so it cant be postural.

I have been getting tremors on and off and also lots of muscle twitches - last night I was woken and kept awake by twitching just above my right ear on scalp - very odd place to have a twitch. Not sure if it is all related to RLS, TOS or what but it is very annoying!

[Christy_D]

One neurologist wrote that my son has 'almost choreiform movements' regarding his tremors of his arms, legs and hands.

(Choreiform Movement

Involuntary, forcible, rapid, jerky movements that may be subtle or become confluent, markedly altering normal patterns of movement. Hypotonia and pendular reflexes are often associated. Conditions which feature recurrent or persistent episodes of chorea as a primary manifestation of disease are referred to as CHOREATIC DISORDERS. Chorea is also a frequent manifestation of BASAL GANGLIA DISEASES.)

Christy

[jbenz1772]

I notice many of you have noted stress as a triggor. My neuro asked me to start a journal as far as symptoms and when they start(what I'm doing, time of day, how I feel). She actually wanted me to take a leave of abscence to figure things out and straighten out my medications. I'm too attached to my job to take a leave, I think I would be more stressed out at home worrying what's going on at work. Most days I just go into the restroom to take deep breaths and sometimes cry if the pain gets too bad. I tend to take on a limp on the worst of it. I do work in a high stress area of a pediatric hospital.

I was doing pretty good and at some times wondering if it was"going away"...ya right. That was until my Doctor asked if I would be willing to move because he may be relocating. Since he started.. what we do has been more involved, high tech, exciting and a lot more satisfying. At that moment my eyelid started going a million miles a minute, almost started crying and shaking. I've been in a flare up since then.(a week ago). Havent been able to get my blood pressure under control, eye twitch, some tremors, muscle cramps and sharp pains up my legs.Couldn't even get out of bed on July 4th. This has led me to really believe in the stress component. Needless to say although considering moving at some point, knowing full well my husband and family wouldn't be willing to move.

So what do you all do the relieve your stress or try to lessen the effects when it hits??

Jennifer

[RockiesGirl]

Stress is a HUGE factor for me; even activities that I'm sure others would consider mild in nature. After a few minutes the tremors start in. Sometimes I can have a glass of red wine and they will lesson but sometimes no matter what I do they continue. They are quite embarrassing and I think even that adds to my stress. I have learned though, if I do not try to calm down they start all over my body but only if I am standing.

If I sit or lay down it is alleviated somewhat.

[Friedbrain]

*raises hand* I have hand tremors, as well. It wasn't something I actually worried about for the longest time, kind of accepting them as just part of the cluster of problems that come and go. The tremors are gone unless I experience a high level of emotion. Sometimes it can even be positive emotion (like seeing an old friend), but *always* with stress. The worst part is that my job involves delicate fine motor work. When I was having some problems, it was making work difficult because I couldn't keep my hands still enough

I found out that my mom has this too, though, and her neuro called it Essential Tremors, as others here have noted. And it can be a familial condition. I wish I understood why, or how to prevent/minimize them, but I don't.

There have been a few times when I've experienced *extreme* upset, and then I've actually had the jerky/ballistic kind of spasms; one time, even poking myself in the eye while I was trying to brush my teeth through them (learned a lesson from that! Doh!). I don't know if that suggests that the tremors are a mild form of basal ganglia dysfunction that can worsen, or if the two are separate, or what. Just throwing that out there.

[ramakentesh]

With POTS you get hand tremors. I get them even when Im feeling 100% well or when im feeling terrible. I dont think that in my case they correlate with my actual symptoms and frankly they are one of the least concerning symptoms of POTS.

Many POts patients exhibit hypervigilance to symptomatic presentations. A doctor said it to me once and I rejected the idea automatically. Over time I have changed my opinion. It is possible that constant increased sympathetic drive plays tricks on the mind or that serotonin (which usually acts as a buffer between autonomic fluctuations) is impaired in POTS. There is a small amount of literature on the topic.

Potentially if someone obsessess about their symptoms they increase their stress levels, deplete their serotonin levels through stress and mediate a numer of bad outcomes, such as potentiating stress, inflammation and autoimmunity.

That being said I dont want to suggest POTs symptoms arent terrible. Ive had hepatitis A and ankylosing spondylitis and Id take these for the rest of my life daily over a relapse of POTS any day of the week.

Dont assume that doctors have the answers with POTS currently. Most dont, and most have very little idea as the research is fairly contentious.

My advice is to ignore the peripheral symptoms. Concentrate on the main symptoms (dizziness, fatigue, etc) and try and improve these. Some get benefit from exercise, pushing through. I hope your able to improve.

[sue1234]

I don't get trembling of the hands, but I have noticed something since developing POTS. When I smile, my cheeks and eye area really tremble pretty bad. I asked my neuro about it, and he didn't address it. I know there is a test to check for low calcium called Chvostek's sign, where you tap over the nerve area on the face in front of the ear. If you are low calcium, your cheek area will twitch. I've often wondering if in the act of smiling, that nerve is being "irritated". If that is the case, then I wonder if my trembling face is a sign of low calcium. Smile, hold it for 5 seconds. Does your face tremble? If anyone's does, please let me know.

[issie]

Tremors caused me to be diagnosised first as having Parkinson's. I don't. The meds, made me a whole lot worse. Then, I was told because the meds for that didn't work that she thought I had lewy bodies and multiple system atrophy. Well this is a death sentence and saying I'd lose my mind before that happened. So, getting the POTS diagnosis - in one way was a huge relief. I won't hopefully, be dying in the next 5 years - as multiple system atropy usually gives you about 10 years to live after diagnosis. And, if I have Lewy Bodies, I hope that when I lose my mind - I won't know about it and won't care and life will be a good thing. So, for now, I put up with the tremors and count my blessings.