annoying, weird and slightly disturbing symptom

[MomtoGiuliana]

Overall I am pretty well so feel badly about complaining when there are others with more significant symptoms than I have these days. Although most of my symptoms are usually mild, with short-lived flare-ups now and then, I have one fairly persistent symptom that is annoying, that I haven't posted about as a subject before, and I haven't seen many (or maybe any) of you mention.

About a week after my daughter was born I developed a definite tremor in my neck--I couldn't move my neck in a smooth motion--it trembled badly whenever I moved. It was evaluated by a neurologist who of course found no explanation for it and was baffled by it, but not concerned about it. I STILL have this symptom pretty persistently over 2 years later and after all my other POTS symptoms have either disappeared or greatly abated. I don't generally notice it during the day when I am active. In fact it seems to abate with activity--or massage, oddly. When I notice it is at night--particularly if I waken during the night and move (I think this is what is called an "intentional tremor"--btw--it generally seems to only occur when I move). It waxes and wanes, but is always there and recently has gotten worse again (and FASTER!). Does anyone else experience this, and have any idea what could cause it and why if I have a tremor is it in my neck and nowhere else, for goodness sake? I do have slight tremor in my hands, but nothing like what my neck does.

It also seems to get worse with adrenaline release, not surprisingly.

I would just like to know whether anyone else has experienced anything like this, or what anyone thinks of this!

Thanks, Katherine

[calypso]

What exactly do you mean by tremor? Does it kind of rattle/vibrate, or do you have one muscle that in particular is tremorous?

I have a specific tremor in one of my fingers -- it is very Parkinson's-like. And there are moments when I feel like my jaw is vibrating, and when I touch it, it kind of is -- then it goes away so I don't worry about it.

I have no idea what causes this. I do know that if massage helps it, it could be worsened by tight muscles compressing a nerve -- specifically, try working on the suboccipital muscles at the base of the head (posterior) and the scalenes, which run more toward the sides of the neck. There are so many nerves that could be getting compressed in this area and causing a tremor.

Keep us posted. And don't feel bad for feeling better than most of us -- you certainly put in many days of feeling like %!&*$.

Amy

[MomtoGiuliana]

Amy

Thanks for the advice. I would describe it as Parkinson's-like at times. At other times like a subtle vibration. When it is at its worst I can't move my head without my head nodding up and down uncontrollably (this is what I experience at night).

Katherine

[katsusu]

HI,

The way you describ your neck going up and down it sounds more like intenitional tremors. Most PD patients do not have their neck being the first place to have tremors- some have redigity/stiffness of the neck, but I have never known anybody mention their neck tremor that much.

Do you have any other symptoms - to go with it?

Also, in general PD tremors may not directly effectedby massage, but would get better through the body relaxing.

Of course this is just my thoughts about PD-I have had PD for 13 yrs.

Kathleen

[MomtoGiuliana]

Hi Kathleen

Thanks for your response.

My neck is not stiff, nor do I have any other symptoms, except like I said very minor tremor in my hands, and the usual, but generally mild, POTS symptoms.

For awhile I was convinced that I must have had some kind of nerve damage during my c-section delivery that caused it--perhaps by the way I was lying during the operation--but that doesn't seem very plausible.

Katherine

[Star382000]

I know at times for me moving my head sideways can be very jerky and shaky. I have had muscle twitch/spasms all over but mostly in my legs and sometimes hand. I am always somewhat shaky/rocking back and forth with my pulse but that I think it is safe to associate with my ADHD?

It is really interesting that you mention that you feel this most when you are laying down to sleep. That's how it gets with my leg's twitching, it's like I am trying to calm down so my body is then taking the time to act up

I'm really sorry I don't know how to explain any of this and can't help any, just wanted to say that in a way you are not alone in this. We are always here to be of comfort if nothing more

[sally]

hi

sounds like essential tremor. Get a second opinion. Essential tremor when effecting the neck area cause the head to shake in a yes-yes or no-no fashion. also ES can effect the other areas of the body and progress with time to get worse. The problem is based in the brain stem.

good luck

[MomtoGiuliana]

sally

Just to clarify--isn't essential tremor a tremor that occurs without voluntary movement? This tremor only seems to occur WITH voluntary movement (albeit small movement).

Thanks, Katherine

[Guest tearose]

I don't have tremor but I do have neck issues. I developed numbness on left cheek and pain enough that I lost range of motion when trying to look left. I have had 3 episodes of trigeminal neuralgia that fortunately have passed. I still have the less intense neuralgia however and am working with a nuerologist to see if PT would help. I just haven't had the consistent strength to commit to going twice to a PT right now. I refused neurontin he offered. tearose

[Nicole's Mom]

Katherine,

I'm wondering however is there any possiblity that it could be a weak muscles? Like for instance when I am really tired or have overused my right arm (this is from residual neuro lyme stuff) if I bring a glass of water toward my mouth my hand and forearm will tremble in this way like I'm jiggling a doorknob in fast motion. It feels to me like muscle stuff- overused, overtired muscles. Also do you carry Giuliana around much? Does she like to be held often? Could you somehow be putting a strain on your neck muscles or maybe on a vertebrae?

Meanwhile I hope it abates on it's own but if it keeps bothering you may indeed want to consider getting another evaluation from someone new.

Beverly

[MomtoGiuliana]

tearose

I'm sorry you've had such pain. I haven't had any pain with this--it's truly just an annoyance at this point--and a puzzle.

Beverly,

Thanks for your ideas, too!

I know the kind of shakiness you mean, I've had that--but this is different.

It's just so strange how it came on so suddenly after the birth. It just seems like there has to be a connection there--either to POTS or to the c-section, somehow.

I haven't described it to a doctor for awhile. When I did, they had no idea and concluded it was nothing significant since every test done, except the tilt table and electrolytes, came back normal.

Katherine

[katsusu]

hi again,

Have you ever heard of restless leg symdrome? IT can causesuch shaking and can happpen in other area of your body, Look it up-you may find some interesting information.

Kathleen

[sally]

Hi Katherine,

Essential Tremor is noticed upon movement. Like when someone is eating or reaching for something although your hands or legs/feet etc will also tremor when moved into a certain pivot point. Such as when you rotate your hand at the wrist at a certain position.

It can effect the head/neck area which is the most common site and also can effect the hands/arms/shoulders, spine area (torso), hips and legs, ankles/feet. It can also effect the tongue and vocal cord as well. I have had essential tremor for close to 10 years now, starting out slowly and in my dominant hand and then progressed and moved to effect the most of my body over tme. This doesn't usually happen to most people but I just got lucky I guess. I take a certain medication to stop the tremor or slow it down so you can do things again without the tremor. If can effect someones eating or writing or gait and cause balance problems. It also will call what someone called an internal tremor feeling in the legs and spine.

ET is genetic and runs true in the family. My mother had it, I have it and now my oldest daughter displays the symptoms. Each generation usually gets the signs of ET at a younger age each generation with some people getting this problem even as a teenager.

If this is what you have, there are meds out there to help. I am an artist, so this tremor was greatly effecting my art to the point of not being able to hold a pen/brush properly but meds helped greatly.

Also ET will get worse at times of illness or lack of sleep overexcertion etc.

Hopes this helps let me know if you have any more questions

Good luck

[MomtoGiuliana]

sally

That is very interesting and it certainly sounds like what I have. My neck tremor waxes and wanes, but definitely is worse when I am stressed, sick, tired. Is it related to/part of POTS, or is it something different in your case--did your doctor(s) say? When I described it to my POTS specialist, he seemed a little stumped, and also not concerned, like I said.

Neither of my parents have any kind of tremor (except the slight tremor of the hands that I think is probably very common with aging). My grandfather developed Parkinson's in his late 70's, but I assume this is not related...?

Well, it hasn't interfered with my life at this point, but if it gets worse at least I have an idea in what direction to go. It still seems strange how it came on so suddenly--but a c-section is a traumatic event.

Are there any particular sources on information on this you would recommend?

Thanks, Katherine

[katsusu]

Sally,

Have you loooked into having the deep brain stimulation operation to help control the tremors. I have Parkinson Disease and hadit done to control the symptoms. I would look into it -when it is time to.

Kathleen

[sally]

Hi Katherine,

Hi I'm not sure of the correlation of dysautonomia and ET but I have had blood pressure problems alot longer than ET. As far as I have researched on ET, there is a specific gene that they have found for this. The best place to research on the subject is

www.essentialtremor.org or wemove.org They both have the most information I've found as well as finding a doctor for diagnosis.

My problem presented itself quite out of the blue as well, (at least it seemed that way to me) but it started as a very slight tremor in the movement of my hand and I kept dropping things such as the phone etc. Then as it progressed into the rest of my body, it caused a gait problem and balance problem. that's when I really got scared and finally sought real treatment for it, after being tested for MS etc...which came out negative.

Mysoline is the drug of choice for this problem and works pretty well. The problem is based in the brain stem from what i've been told by neurologist but feels like it's in the other parts of the body. very strange!

I had a EMG by a neurologist to find the type of tremor (each tremor type has a different frequency of tremor) so that tells them what's going on. A very painful procedure but i could actually see and hear the tremor while testing. Also alcohol usually stops the tremor, not that I would recommend that for an everyday treatment plan. It will also get worse if a person is nervous or stressed.

It's not something that will hurt you like other diseases but it can be a problem in the functioning dept for alot of people and can be embarrassing when eating.

My mother didn't display this problem until she was in her elderly years as well but I was about 35 when I first noticed problems and my daughter was about 20. It took about 10 years to progress for me and as long as I take my meds for it...not much of a problem for me although there are people who don't respond to medication and have to have surgery for this. So I consider myself very lucky.

Good luck and keep me posted.

[sally]

Hi Kathleen,

Thanks for your reply. Yes, I was told by my neurologist about surgery for this problem but so far medication has helped me a great deal. Without it, I'm afraid I wouldn't be able to create and paint like I need to, let along write and walking would be a bigger problem at times. That surgery is suppose to be a great relief to alot of people who have this problem in the severe stages that cannot feed themselves due to severe tremor or have severe gait problems to the point of not being able to walk around without falling over.

I'm one of the lucky ones who medication does the trick, it's only when I'm coming down with something like the flu or cold/virus or whatever, my tremor kicks in high gear. I feel it especially in my spine torso area at those times. That's one indication that I'm getting sick or overtired so I just slow down and rest more when that happens. Before medication I was at times having great difficultly walking...tripping over my own two feet and was fearful coming down steps etc.

My doc told me if it keeps progressing down the road when I get much older I'd have more difficulties but so far so good. The only problem with the meds are they can make you sleepy in the AM. Mysoline is used for seizures and has phenobarbitol in it which is habit forming I think but, hey it works.

My blood pressure problems cause me more grief than anything else...I wish they had a cure for that as well other than medication, I'd go for that one for sure!

[sally]

Hi Kathleen,

I knocked myself offline by mistake before finishing my reply...sorry.

How long have you had parkinsons if you don't me asking? I'm glad the surgery helped you with your tremor. I thank you for your reply and I wish you all the best and hope you continue to feel good.

[katsusu]

Sally,

I have had Parkinson for 12 years. and POTS for 4 years. My POTS- is my biggest problem.

Idon't really want to mention this but I thought gait and balance problems are some of PD symptoms. I did not know it went with ET ,too. MRI of PD brains are usually normal- Pd can only be seen with PETS scans - i am pretty sure.

What can of OI do you have. POTS and PD are very- very rare- i was the first to be seen by NIH doctors- so I would not worry about that - but orthostatic intolerance is more common with Parkinsons.

It is all very complicating.

Kathleen

[sally]

Hi Kathleen,

I think it depends on where the ET effects the body if it causes gait or balance difficulties. In mine, ET tremor shows in the torso and hips,legs and ankles which can cause walking problems when its acting up or if I didn't take meds. On the EMG which shows the tremor registers a certain wave or measurement of speed of the tremor to determine which type of tremor you are experiencing, plus if the tremor is action or resting comes into play. From what I've read on it, its not too common to have the tremor in those parts of the body, most people have the head bobbing tremor or hands.

We also have Ehlers Danlos Syndrome in our family which causes laxed ligaments etc that can cause a sort of clumsy appearance to your walking among other problems that EDS gives you. Both my girls have been diagnosed with this. It comes from me/my side of the family. As far as the OI we all three have been diagnosed with NMH/NCS but have a ton of the pots symptoms but since the medication is pretty much the same for treatment, haven't really pushed the issue with the cardiologist. Both conditions seem to have pretty much the same response on the body and as long as the meds work fairly well I'm content. I was told that the OI mostly is caused by the Ehlers Danlos due to laxed vessels etc by Johns Hopkins but the cardiologist is not so sure. I know alot of EDS have blood pressure problems from what I've read and it is usually a dual diagnosis. We hit the genetic lottery I guess.

I'm sorry to hear about the PD, I can relate to having multiple health problems and the frustration it causes. I agree with what you said about the blood pressure issue, in my book it is by far the worst thing over anything else I deal with also. I think because it's an up and down problem throughout the day and causes mental fog & weakness...at least for me & my girls. sometimes we feel like we're on a natural drunk!

Good luck and have a feel good day

[katsusu]

Very interesting, but not very funny. Sorry - that just came out. It is very interesting, Idid not know there was so many things to know about tremors. i think you would be very happy with the DBS- start looking into it- so if and when the time comes- you will understand.

For everybody else, I feel this is a good lesson in knowing your body and knowing what iswhat and keeping after the doctors till they give u an answer of awarness.

I say an answer of awarness because sometimes theywill not find an easy answer or even a hard answer- sometimes all they find is empty answers from negative test. But the important issue is they validate your complaint - then you can document the problem and maybe one day you will complete the puzzle, but in the mean time -if your doctor believeese in u then you will not feel alone and left to drown in the sea of emotions. So-as much as u may want to-don;t give up the ship by losing faith in yourself.

observe, learn, understand your symptoms because they are real- they are yours and you need to learn how to live it- the doctors just have to learn to live with u as a patient. Ofcourse- for some of our doctors -it is much more then they ever dreamed of in medical school -unless it was a nightmare. lol

Kathleen

[JLB]

Katherine - hope I didn't miss the answer to this in reading through the thread... Did you have a spinal anesthetic for your C-Section?

[MomtoGiuliana]

sally, and everyone--thank you for taking the time to reply to my question--it's been helpful. Kathleen--very good point re: keep pushing for a diagnosis/understanding. It is easy to give up -- at least until the next major crisis occurs -- when the answers do not come to doctors easily or when they won't even take you seriously when you describe a symptom.

JLB--no I didn't have a spinal anesthetic. I had been in labor w/out drugs for hours when I had a sudden very serious placental abruption. Because they had to act quickly, I was put under general anesthesia for the c-section. I have also wondered if it was a reaction to any of the drugs used--but more likely, it was probably the general trauma. I guess I'll never know. But, I feel like I have something specific to pursue with my doctors now--with the essential tremor idea.

Thanks, Katherine

[ramakentesh]

the tremors relating to POTS are often very similar to an overactive thyroid - in that they both relate to an overactive nervous system but for different reasons.

The overactivity in POTS relates to the body releasing more adrenalin than normal to maintain blood pressure to the brain lagging because of hypovolumia as an example