Are Tremors And Shaking Only Symptoms Of Hyperpots?

[looneymom]

I have read much research on hyperpots. This morning, my son woke up with hard shaking and tremors below the waist. I went ahead and took my son to physical therapy so the physical therapist could see what was going on. I have also called his cardiologist and neurologist to let them know what has happened. Does the shaking and tremors happen in other types of pots. My son has not been diagnosed with hyperpots because he is not able to stand for the test. Is this a sigh he could be going through another growth spurt? His vocal tic has also made it's presence known. Feeling sorry and frustrated in this situation. Just wanted to know if adults or growing teenagers have experienced this.

[Katybug]

I have tremors in my hands, arms, and lips on and off. Bad POTS day= bad tremors day. I am not dx'ed with hyperpots because my catecholemines don't fall outside the normal ranges but my presentation is very similar to hyperpots according to my POTS Neuro. Just to let you know, he evaluates my tremors whenever he can because, Depakote, one of my migraine meds, can cause tremors. But, apparently, the Depakote tremors "look" a certain way and mine have a different presentation that he feels are more in line with cerebral hypoperfusion. I say this just to give you another avenue to look at which is a medication induced tremor. I hope he gets past this particular symptom quickly .....hands are bad enough, I can't imagine having this in my lower body.

[Canadiangirl73]

I experienced this soon after my onset. It happened to me under 5 times, mostly when I woke up. I had tremors and shaking that resembled Parkinson's. My head would bobbled, my arms and legs would shake. Things resolved gradually over 1/2 hour, but not all at once. Left arm always last thing to stop moving. It was completely different from the shaking that accompanies adrenal surges and my vitals were actually pretty "normal" during those episodes.

I never mentioned it to doctors since they tend to chalk everything up to dysautonomia and don't do tests. I did however have a brain MRI since and eeg (for other reasons) that were normal.

[looneymom]

Katybug

I will defiantly be talking to the doctor about medications on his visit this week. The neurologist has seen his shaking before. His shaking started when got out of bed around 7am and stopped at around 10:30 am. So, I'm hoping it will not come back. I tried to take his blood pressure during the episode, but machine would not take it. When the shaking stopped, his blood pressure was 115/75 and heart rate was 56.

Canadiangirl73

Could you describe what you feel like during an adrenal surge. How is the shaking different? Is it an all over body shake? When he has shaking spells this bad, I am not able to get a blood pressure reading. Most of his shaking is from waist down. However, there have been a few times when it has showed up in his right arm and hand.

Thanks for the information.

[arizona girl]

I don't know if this helps, but I do have hyper pots and shaking like you describe is not a feature of it from what I was told. Dr. Grubb describes it as more of a all body tremoulous, sweaty, jittery type response only when upright. It stops once you are supine.

We had a member on here that described similar symptoms and she went on to be diagnosed with a neuromuscular condition called stiff person's syndrome. My neuro also treats these kind of patients. A neuro that specializes in autoimmune neuromuscular disease and seizure disorders might be a good type doctor to see. There are not a lot of them out there though, depends on where you live.

If your child has something like this it is better to get diagnosed sooner rather then later, as there are some very good treatment options for these type of illnesses. No cures, but there are treatments and it can be managed.

[looneymom]

The physical therapist had him lay down on a mat and the shaking got worse. He shakes less when sitting up. The shaking stopped about 10:30 this morning, so I'm hoping is won't come back. I will look this up. I've not heard of this before. Thanks for the information.

[jpjd59]

looneymom:

My daughter has hyperPOTS and she does experience shaking like you described when she is having an especially bad "POTS episode". I have no idea what causes it. It's heartbreaking to watch.

Pam

[looneymom]

Thank you so much for responding Pam. Have you found anything to help with these bad episodes?

[jpjd59]

No, just time. They usually subside within a few hours.

[Canadiangirl73]

Canadiangirl73

Could you describe what you feel like during an adrenal surge. How is the shaking different? Is it an all over body shake? When he has shaking spells this bad, I am not able to get a blood pressure reading. Most of his shaking is from waist down. However, there have been a few times when it has showed up in his right arm and hand.

Looneymom,

During an adrenal surge, the shaking is mostly in the legs and more like "shivers". There is also a bit of rigidity involved when these happen during a surge and always muscle soreness afterwards and chills. It is a bit difficult to describe. The other sort was my entire body and resembled Parkinson's tremors. My husband had to sort of stabilize my body to calm the Parkinson-like tremors in order for me to take a BP reading. Hope your son feels better now.

[Guest Alex]

I've had many episodes of shaking - mainly my legs but on occasions my whole body was affected - when my teeth chatter I just know I'm in for a long one. They usually subside on their own in 30-60 min. Most medical professionals I've seen about these and all the paramedics that took me to the ER on several occasions told me they are due to an inappropriate release of adrenaline or a panic attack type of event...no comments here. I know better by now.

For me these have only happened at rest, and if I have the guts to stand and walk them off the shaking subsides once I am up and walking.

When these episodes happen I always have a racing heart and sometimes even an elevated (for me) BP (one time it was 130/80 or so and I recall my hubby making fun of me saying he wished he had my BP. I told him though that it only comes as a package - if he wants the BP he should have the tremors as well. The tremors were a deal breaker )

Given that I've had so many of these episodes I am somewhat 'used' to them but they are frightening - so sorry your son is dealing with this.

Alex

Oh - I had my blood catecholamines checked 3 times and my levels are normal - no hyper POTS here.

[looneymom]

Does sitting upright make the tremors and shaking worse? Just wondering because after we came home from physical therapy, I helped him get into his recliner and about 30 minutes later the shaking finally stopped. I hate seeing him go through these spells. He hurts more afterwards and nothing seems to help with pain. It is really interesting to know that this can happen in both types of POTS. However, I'm surprised that doctors have not figured what medication would treat this awful symptom and keep it at bay. My son is on Clonidine and I thought this was supposed to help with shaking and tremors. He has been on it for about 4 weeks but maybe this is not enough time to see if it will help with this condition. He was put on this medication in the first place because the shaking had gotten so bad that he was not able to complete physical therapy sessions. Thank for all your valuable information. It's great to be able to hear about other peoples experiences and to know that you are not the only one suffering with unpredictable POTS. Hope everyone else is having a symptom free day.

[MightyMouse]

I have hyperpots, and produce a huge amount of chatecholes compared to normal people. I have only had the shaking one time, and it was full body, like shivering. I've never had tremors. That being said, I am not representative of most patients because I know my version is related to a genetic disorder that involves collagen and bone growth and is most related to dwarfism

[Katybug]

Looneymom,

I forgot to mention....if you can, try to video one of these episodes so that you can have a record to show any doctor you come across. Pictures and video have been really helpful for some of my doctors with my various issues.

[jpjd59]

Katybug:

Great idea! Sometimes it is hard to describe an episode to a doctor without them looking at you like you are crazy. A picture (or video) is worth a thousand words!!!!

Pam

[looneymom]

My husband and I were talking about this ideal this morning. Since I have a phone that will do this, Why not? Then maybe new doctors won't look at us like we are crazy parents. By the way my son woke up sick to his stomach with diarrhea. This will surely upset the system.

[Kat]

I am very interested in this topic. Has anyone read about POT? Primary Orthostatic Tremor? Some of the symptoms are very similar to POTS. I would be interested in anyone's thoughts about this possibly overlapping.

[issie]

http://circ.ahajournals.org/content/117/21/2814.full

" Patients with hyperadrenergic POTS often complain of significant tremor, anxiety, and cold sweaty extremities while upright. Over half of these patients experience migraine headaches as well as a significant increase in urinary output after being upright for only a short period of time. A characteristic of this form of POTS is that patients will often display orthostatic hypertension in addition to orthostatic tachycardia."

I found this article from Dr. Grubb about HyperPOTS people and them having "significant tremor". I'm hyperPOTS and do have this sort of tremor. It's not all the time, but when I'm having a "spell" - I get the tremors.

Some of my symptoms I think may be from too much NE with upright posture - but, some of them are from MCAS. When lying down, for me - I think those things are from MCAS. It's sometimes hard to distinguish between the symptoms of the two.

Issie

[issie]

Another thing to think about --there are sites on the NET showing that Lyme disease is also causing these type tremors and issues with the autonomic system in this regard.

We've seen some having good results with Alpha Lipoic Acid and many of us have found that curcumin is good for pain and inflammation. So, these seem to be helpful for some of us.

Issie

[Kat]

I had been diagnosed with Orthostatic tremor a couple of years ago at Mayo. Just recently with POTS. When standing my tremor is significant. I cant help but wonder if it is POTS causing the tremor and not Orthostatic tremor. It would sure be nice to have have one issue instead of the two.

[looneymom]

I agree with you Kat. My son has too many symptoms, but all of his symptoms came after the POTS diagnosis. My son will be having more blood work ran this next week to see if his POTS is being caused by AAG.

[Kat]

Do you know what blood test that is? I just feel like I got the OT diagnosis first but really it is caused by the POTS. I am making a list of things to consider for my neurology appointment Monday.

[looneymom]

Kit

Load the next page of topics. It's the post about Autoimmune Autonomic Dystonia testing. This test has just become available this year. MAYO clinic used it in studies. It checks for antibodies that cause AAG and other things. If you go back a few more pages there are some post about AAG. My son has been on the normal POTS medications for over a year but he does not seem to be able to make progress with medications and physical therapy. Good luck with your appointment and I hope you get some answers.

[Guest Alex]

Kat,

here is a link to the Mayo page with the testing algorhythm for evaluating autoimmune dysautonomia

http://www.mayomedicallaboratories.com/articles/hottopics/transcripts/2011/02-auto-dys-eval/14.html

hope this helps.

Alex

[Kat]

Thanks!!