Fine Tremor

[janiedelite]

I've so recently been diagnosed and I'm still trying to put all the pieces together! But when I was at Mayo the neurologist noticed I have a fine tremor in my hands. My mom (who's 60) also has this, as well as her mother, and her mother, etc.... My mom and I both have this small fiber neuropathy also, although we don't know of neurological problems in any of the other family members. My mom also has a rare neuroendocrine cancer called carcinoid syndrome. My mom's tremor is slight, my grandma's prevents her from writing, but I guess her mother's affected her entire arms. No Parkinson's from what I hear.

The Mayo doc says my POTS probably came on post-viral (I had mono in 6/06 and first went to the ER with high HR 10/06). But the more I think about this, I'm really questioning if there is a strong genetic component to my small fiber neuropathy (my POTS is secondary to the neuropathy, according to the Mayo doc). The tremors in the ladies of my family usually don't set in til they're in their 50's, but I'm 35 and I noticed in my 20's that my handwriting was very wobbly and I was having to buy fat pens in order to keep control over my writing. My mom's neuropathy didn't set in til her 50's, but she got carcinoid in her 30's. My neuropathy set in during the last couple years. But I had POTS symptoms prior to the burning/itching/numbness from the neuropathy. Maybe the neuropathy was present in 2006 but the pain just hadn't set in yet???

Also, from what I've read post-viral POTS doesn't have a progressive course, and many people get better. My POTS and neuropathy symptoms have slowly worsened over the last few years, though. The last couple months I feel like I've stabilized but I've been very diligent about fluids, salt, compression, stress, etc. My mom's burning skin hasn't really gotten worse with time, though. Maybe now that this has set in it will kind of stabilize?

Just an FYI, my tremors do get worse with orthostatic stress, and I did have elevated norepinephrine levels on standing which can cause tremors. But they are also there when I'm reclining on the couch. I often knock things over, drop things, I can't fill cups very full or I'll shake the liquid out.

P.S. My brother had a neurofibroma removed when he was about 30, so my family just seems to develop crazy neurological conditions around this age! I feel like I've been posting a lot lately, but I either bug you guys about it during the day (and you are all so knowledgeable) or I wait til hubby gets home at night and he goes cross-eyed on me!

Thanks

I'm so thankful I don't have the muscle weakness many of you have talked about. But does anyone have this kind of constant tremor? Small fiber neuropathy?

[abbriggs]

I have had POTS for about 3 year now. My tremor did not start until about a year ago. The first time I noticed it seemed to be an internal tremor that you could not see on the outside. Now I have both internal and external tremors. Just wondering if you have internal tremors.

Thanks,

Mandi

[janiedelite]

Abbriggs, I don't know about an internal tremor, but my mom and I have these wierd shaking episodes that accompany our very rare migraines. We start shaking uncontrollably from the legs up. Nausea and vomitting also accompanies these migraines. Other than that, my tremor seems to just affect my hands.

Thanks, and I hope you get some anwers! Janie

[mancmm19]

Hi!

I have been getting tremors as well, although they seem to have subsided in my hands. I get them mostly when I exert myself too much, or before I have an episode. Before an episode, they seem to begin in the abdominal area and feel almost like I have the chills on the inside, although they aren't visible on the outside. Then once I go into a full episode, my teeth chatter, and I get drastic shaking and jerking of my legs, arms, head, everything. So much so that I was tested for seizures 3 times! I'm glad that I finally know what's causing them though. Have you ever taken anything like Xanex? When my body is completely calm and relaxed, they almost disappear.

[janiedelite]

Hi Michele, I'm glad you figured out that dysautonomia flares cause your tremors! I do have worse tremors when I'm under orthostatic stress, or any stress for that matter. But my main concern is the tremor that I have all the time, even while I'm resting or when I first wake up in the morning. I just wonder if it's associated somehow with the small fiber neuropathy that's gotten worse along with the tremor.

I don't take anything for the tremor because it's not really associated with any stress as it's always present even when I'm relaxed. And it doesn't impair my function much at this time.

Thanks, Janie

[ana_22]

i had internal tremors last year.....thankfully they have eased up a bit.

[Ernie]

Hi,

I have intense tremors which is mostly caused by adrenaline. It is controlled by BB.

[Sophia3]

I've had tremors for over a decade...some days not there..others are..and will be there evenlying still..but focusing and being upright can worsen..but yea, it's an andrenalin thing in my case

[firewatcher]

I NEVER had a tremor until August of 2007. It is the only reason that I pursued a diagnosis. I could not work because of it. At first they thought it was early onset Parkinson's, but the movement disorder specialist said "No, it is an enhanced physiologic tremor." He said I had it in both hands, legs and my tongue (of all places!)

I never really noticed the tachycardia that I had always had unless I tried to run, but I sure noticed the tremor and when it started! If I don't take my Propranolol it gets bad and very noticeable. My hands and eventually my whole body will shake, almost like shivering. I don't know what "snapped" in August of 2007, but less than a month later the polyuria started as well.

I am just happy there is a med to control it or my career was over!

[abbriggs]

My Tremors started when I was coming off my BB. A lot of the time they feel like my blood sugar is low and I am very very hungry. But that is not the case. If I have to get up in the middle of the night the internal tremor is horrible. It is so strong it feels as if I should be able to hear it.

[Maxine]

I've had internal tremors, and whole body tremors when my body gets overstimulated by heavy stress, or I'm having adrenaline surges from the POTS.

BUT, when these things aren't happening I'm steady Eddie with my hands----they never shake. However, I have clumsy hands from the EDS and the pressure on upper spine on and off depending on how active I am.

My husband and his whole family have familial tremors:

http://www.nlm.nih.gov/MEDLINEPLUS/ency/article/000763.htm

His hands shake so badly sometimes, especially when he's stressed. If he has really intense stress his hands and arms will shake violently.

Maxine :0)

[ajw4790]

Hi,

I have an Essential Tremor that I treat with Primidone- BB's did not work for me. I have had this since I was very young... 10 years old or so. It also runs in my family.

Also, for those who experience these tremors on and off and are worsened by orthostatic stress, there is a type of tremor called Orthostatic Tremor.

I also get this and it is different from my ET. When I get OT my legs are VERY trembly, and I look insanely nervous.

[janiedelite]

Hi guys, sorry I haven't replied to all of your great posts. My hubby and I celebrated our anniversary yesterday! Funny story, though. We went to a movie and I was at the counter, shaking salt onto my popcorn (who else besides POTS people salts movie popcorn?). Well, this tremor makes me drop things sometimes if I don't grip them very firmly. So I'm shaking the salt shaker and it goes flying and I try to grab it and my arm flails toward my drink. My hubby instictively grabs the drink to keep it from flying too, but accidentally squashes it with his hand and sloshes it down my jacket, pants, shoes, and socks! It was blackberry cream italian soda ! I was so sticky, but we still had a fun movie!

Maxine, thanks for the definition of familial tremors. Very interesting!

Sounds like beta blockers work for many of you! My neurologist had suggested that if I find the tremors too annoying we could try BB's.

AJW, I can relate to the orthostatic tremor you described. The adrenaline-induced tremors seem most common with POTS. But I'm thankful for those of you who replied who have tremors at rest also. Very interesting!

I have lots of muscle fasciculations (twitches) during POTS flares while I'm at rest, but I don't think those are the same internal tremors you folks were referring to.

Firewatcher, it was really interesting that your tremors were your first symptom of dysautonomia. I'm glad you were able to find a treatment. It seems that my tremor (while I'm at rest) is the familial tremor Maxine described, but it seems to be worsening along with the POTS so I do wonder if there's a connection. As with most of my crazy symptoms, only time will tell!

Thanks so much, guys! Janie

[all4family]

Hi Janie,

I just wanted to add that I get the twitching when I am real bad. It is like having a eye twitch in my muscles. You can see it too. I also get the hand shaking, but I don't have it all the time. Mostly just when I am tired.

Thank you for sharing your speial aniversary story with us! HAPPY ANIVERSARY! that is a cute story, and I can so relate to it! I fumble and drop things frequently. I'm glad you still had a good time! And just to think you were litterally his SWEET heart!

hugs

Suzy

[cordila]

Hi guys!

I'm so glad to find this post. I'm lying in bed after suffering last night through the worst tremors ever. I only get them really badly when I am also very nauseated (which I was last night). I have been under a lot of stress the last two weeks, the barometric pressure dropped a lot yesterday and I couldn't get my BP above 80/43. That was during the day. Suddenly at night I developed full on tremors with horrifying nausea.

Aside: my nausea is rarely ever accompanied with vomiting. Does anyone else have this? I'd say the ration is 1,000/1.

Anyway, I have been very bad in forgetting to take my B1 cream, which has, for the most part, kept the tremors at bay. During these last 2 weeks I forget to take it and last night I sure paid the price.

The problem is...all day today I've been in bed with huge abdominal pain. It sort of feels like someone has it in a vice. It feels gripped. I can't eat any food and this far have not been able to have any water. I popped a ginger ale about an hour ago and have been taking the babiest of sips. I'm not even 1/10th of the way into the can.

Does anyone have any tips for both the tremors (when they are in the throws of them) and/or the aftermath. I KNOW I need to drink in order to stay out of the hospital but my tummy just does not want to at all!

Help!

[abbriggs]

My tremor started about a year ago. I have had POTS for about 3 years with the pregnancy of my daughter. My tremor started with a pots flare and has not gone away. It gets better with beta blockers. What is this B1 cream you are talking about? As for the stomach. My stomach really started feeling better when I started taking asadophalus (not sure of the spelling). But i take it every night and morning, along with a bunch of other supplements.

[cordila]

The B cream is called Authia cream by Westlake Labs and I buy it on www.ourkidsasd.com - they usually have it on sale. I've been putting it on for 1.5 years now and it's totally helped put me back on my feet. I stopped taking it for 2 weeks (call it arrogance, call it distraction, call it not wanting to stink) and last night I paid the price for it big time. And now it's the day after and I can't eat or drink. I think my stomach is traumatized from 5 hours of shaking and tremendous adrenalin surges and extreme nausea.

I take probiotics/acidopholus daily. That is...when I remember.

Vowing to be better about that!

[janiedelite]

Hi waterbaby, I'm sorry to hear about your recent flare. Although it's encouraging to read about how relatively stable you've been! For me, I always have a slight tremor in my hands. But when I'm more flared then I get twitches in larger muscles like in my arms and legs. I also have CONSTANT nausea but I only throw up if I: eat a large meal (especially high fat), really over-exert and/or am not vigilant about staying hydrated. When I do throw up, it's accompanied by horrible tremors (shake the whole bed), migraine, all-over pain, basically POTS symptoms just to the max. It usually takes me hours, if not days, to recover. I keep some phenergan on hand for times such as these. When I did a motility study, we found my small intestine moves really slowly.

I hope you get out of this flare soon! Please do whatever you can to stay hydrated...

[ramakentesh]

Actually Im pretty sure most if not all POTS patients would have a postural tremor - I know I do. If I hold my legs up they also tremble most of the time and during my tilt table my nerve firing rate in response to tilt was four times higher than normal - as was my NE release.

Like others here, my tremor was one of my first symptoms but i didnt connect it to be being related to standing until later on when i got POTS.

I also get periods of excessive trembling when i feel cold and very much out of it. Originally I was told this was migraine related, then i was told that it was an adrenaline response to a sudden disruption in blood circulation caused by POTS.

It could also be a sudden deficit in nitric oxide causing a type of hypothermia although the sweating present would not make much sense then.

[toddm1960]

I'm in the internal tremor crowd, always way worse when I'm flairing. I was dx just this past February, but have had these for the past 3 years. While they haven't improved any, it's just nice to know why I'm getting them.

[janiedelite]

My tremor is noticeable now whenever I move my forearms or fingers, they jerk. I used to just notice it at rest, and it worsened when upright. My hubby and I really noticed it this past weekend when I was lifting a glass off the table and setting it down. It was hard to keep the water from sloshing out. This happens whether I'm lying or sitting or standing now. Right now, I'm laying down using the laptop and our mouse is the kind you drag your finger across to make the cursor move. My finger keeps skipping unintentionally over the mouse and sometimes it takes several attempts to get the cursor where I want it. I'm making typing errors now, too, that I never made before like hitting one key twice instead of just once. We also have a really sensitive mouse button and I keep hitting it unintentionally. I see my doc next week for something else, but I'll mention it to her. I don't really want to go through any more tests, I just want it noted.

I feel like I'm a 35-year-old in an 80-year-old body sometimes!