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Avatar universal

Does anyone else have severe tremors, body twitches, and high blood pressure with their POTS?


    I just came back from Cleveland Clinic and I tested positive on the tilt table for POTS, but they also told me that it is secondary to a primary problem.  They told me that POTS doesn't have severe tremors, body twithces, and high blood pressure.  My tremors are so severe at times that I look like I am having a seizure, but I'm not.  I get body twitches that I can not control.  My hand might just fly up in the air, sometimes it's a leg, or finger, and I've even had my entire body twitch so hard that it hurts.  If anyone else has these symptoms, please let me know and do you have a diagnosis?  Are there any meds or things out there to help with the tremors and body twitches.  They are making me very weak.  I have even fallen because my legs are shaking so bad, that they won't support me.  Thanks for any help or ideas you can give him.
37 Responses
511019 tn?1214340923
Could it be caused by medication you are taking?
Avatar universal
What is the age of the patient, Did they mention MSA or pure autonomic dsyfunction?
492869 tn?1285022533
I'm sorry to hear about your troubling symptoms.  Have you ever had an EEG, or seen a Neurologist about these symptoms?
Avatar universal

     It's me again.  I had a very rough time for a few days and wasn't able to do anything.  It's not the medication.  When I go off it, I am much, much worse.  They weaned me off the meds to do a test and I thought I was going to die by the time the 48 hours were up.  The medications at least slow down the sypmtoms most of the time, but I still get bad days.  I am 45 years old and in Cleveland they did mention MSA or possibly Parkinson's.  But, they said I will be going to MAYO as they don't have the facilities to test for dysautomia, but MAYO does.  SO, I'm scheduled to go there in October.  Sometimes, I just don't know if I can make it until then.  I haven't seen a Neurologist yet or had an EEG.  I'm scheduled to be back in Cleveland on August 22nd to see a Neurologist and do some testing.  The thing is they want to wean me off the meds again and I have to be off them for at least 48 hours before they do the tests.  Then they still want me to go to MAYO and do it all over again in October.  Do you think I should do it twice?   Or should I wait and just do the MAYO appointment?  Being off my meds causes the tremors to increase significantly.  I look like someone having a seizure, but I am not.  Also, my blood pressure goes sky high.  It was 200 over 130 at Cleveland and I wasn't allowed to move.  So, I would appreciate any thoughts on this.  Thanks for your concern.
Avatar universal
I appreciate all of your help and questions, but I am still wondering if any of you have the symptoms mentioned above with your POTS?  If so, have you been diagnosed and what do you have?  I do have an appointment at MAYO on October 6th.  Thanks for any help you can give.

Avatar universal
Hi Rhonda,

It does sound like your POTS is secondary to another condition. I have CFS and have POTS. Can you list all of your symptoms ?
Avatar universal

     What is CFS?  I haven't heard of that before.  The doctors in Cleveland are thinking MSA, I hope not.  They are sending me to MAYO.  I'm hoping to get some answers.  You asked what my symptoms are, so here goes:

High Blood Pressure - any kind of movement increases the B/P (190/118) & higher
Tachycardia - any kind of movement increases the heart rate
Severe Tremors - the more I do, the more severe the tremors
Uncontrollable Body Twitches - my body will move or jerk on its own
Chest pressure/pain
Frequent Headaches
Shortness of Breath
Difficulty Sleeping
Tingling in and throughout my body.
Limbs will go numb
Dizziness - but I have never fainted
Ringing in the ears and sounds seem far away
My head & neck sweat while walking, but the rest of my body has goosebumps & shiver
After 5-10 minutes of walking the tremors, my legs get weak and if I don't sit down, I'll fall down.  

I don't know if this helps at all, but I'm willing to check anything out.  This has changed my whole life.  I very seldom leave my house anymore.  After MAYO, they either figure out a way to help or I find a way to get out and about.  I would rather live life and die early then just exist.  I hope you are well and I appreciate your help.  Have a great day.

Well, these ste sll common among Ehlers-Danlos patients in my groups on fb. Nit it is now 2017, so i am sure u know what you have ny now...right?
Avatar universal

What is MSA ? I'm surprised I've never heard of it before. Is it a rare disease ?

CFS stands for Chronic Fatigue Syndrome. All of the symptoms you've listed I have, except the tremors, body twitches and head & neck sweating. However... those symptoms are seen in some CFS patients. Ringing in the ears (tinnitus) is very common with CFS patients. Usually CFS patients have low blood pressure, but I think the illness can reach a certain point where that changes.

There is no test for CFS... but there is one test that apparently all CFS patients are failing. It is a heart test called the "Holter Test".  CFS patients will show repetitively flat to inverted T waves alternating with normal T waves... this is not normal and to my understanding, it isn't seen in other diseases.

You may want to read this information on CFS and see if you can relate :

What is ME ? What is CFS ? Information for Clinicians and Lawyers


Also feel free to check out my website (the website address is listed in my profile). I have the latest research on CFS and diagnostic tests, treatments, etc.



492869 tn?1285022533
I believe MSA stands for Multiple System Atrophy, also called Shy-Drager Syndrome.
Avatar universal
Hi Again,

     Thanks for the info. on CFS.  I am checking it out.  I did have a holter monitor and it came back sinus tachycardia with any kind of movement.  It didn't show any T waves, so I'm assuming I don't have CFS.  But, who knows.  I'll be out to MAYO soon and maybe they can come up with a diagnosis.  MSA (Multiple System Atrophy) is a rare disease and from what I am reading, there is no cure.  People diagnosed with it usually die withing in 6-10 years.  So, I'm hoping that is not what I have, but if I do, then I will figure out a way to live the rest of my life.  I refuse to sit and be a prisoner in my own home.  I wish you luck and I hope things are going well for you.  I'll be praying for you.

Avatar universal

I will keep you in my thoughts n' prayers. You know after I started the Marshall Protocol, a research protocol, my blood pressure is more stabilized and the tachycardia is pretty much gone ! The MP has been successfully treating many of these "syndromes" and even autoimmune diseases... especially those that affect your nervous and immune system.

If you want more information, please let me know. I can send you some great links via PM. I have found that the treatment I'm on is healing me.. despite the fact that many physicians claim there is no cure or treatment for my illness.


Marshall and Benicar...UGH! TZhe man is nuts. Nobody can live like a vampire. It almost stopped my heart with the Potassium changes. I hope he is gone into a cave to rethink his idea.
I ended up having Ehlers-Danlos
Marshall can't gix that, nut Low Dose Naltrexone sure makes a great dent in all the symptoms.
Avatar universal

Out of curiousity, why were you taking the Benicar ? Have you tried the MP before ?

As far as cardiac involvement in CFS patients... there are many publications on this:

Lerner AM, Lawrie C, Dworkin HJ. Repetitively negative changing T-waves at 24-h electrocardiographic monitors in patients with the chronic fatigue syndrome (left ventricular dysfunction in a cohort). Chest. 1993; 104:1417-1421.
This first of our CFS publications outlines the essential cardiac involvement of CFS.  We showed that 24 CFS consecutive patients had abnormal cardiac electrical conduction by 24-hr. ECG testing (Holter monitoring) compared to 106 non-fatigued control patients (p<0.03).  In 8 of the 24 patients, gross abnormal cardiac wall motion at exercise MUGA testing was seen.  Coronary artery disease was excluded by myocardial perfusion imaging in all CFS patients.

2 Dworkin HJ, Lawrie C, Bohdiewicz P and Lerner AM Abnormal left ventricular myocardial dynamics in eleven patients with the chronic fatigue syndrome. Clinical Nuclear Medicine 1994;19:675-677.
Continuing the CFS cardiac focus, 11 CFS patients were studied using the cardiac nuclear medicine MUGA test which measures muscle strength of the heart.  Abnormal cardiac wall motion at rest and stress, dilation of the left ventricle and segmental wall motion abnormalities were observed.  The cardiac abnormal dynamics worsen as CFS continues.

3 Lerner AM, Goldstein J, Chang CH et al. Cardiac involvement in patients with chronic fatigue syndrome as documented with Holter and biopsy data in Birmingham, MI 1991-1993. Infectious Diseases in Clinical Practice 1997;6:327-33.
This is a controlled study of CFS cardiac involvement.  The prevalence of abnormal Holter monitoring in 67 CFS patients and 78 non-CFS patients matched for age, place and time and absence of other confounding medical diseases were compared.  Holter monitors in both CFS and control groups were read by two non-involved cardiologists without clinical knowledge about the patient or place in the study.  Dr. Lerner was not a reader of Holter monitors in this study.  The prevalence of T-wave abnormalities by Holter monitoring was greater in CFS than in non-CFS patients (p<0.01).  The presence of abnormal T-waves at Holter monitoring was “sensitive indicator of the presence of CFS.”  The “absence” of these abnormal T-waves made the diagnosis of CFS unlikely (statistical sensitivity 0.96).  Light and electron micrographic studies of right ventricular endomyocardial biopsies in these CFS patients showed cardiomyopathic changes.  We do not recommend further right ventricular cardiac biopsies in CFS patients since the hearts of CFS patients may be friable and may have an increased likelihood of post-biopsy bleeding.  

Summary of Publications 1-3 (Cardiac Involvement in CFS)
This original work shows that rapid heart rates at rest, and in some cases, abnormal cardiac wall motion contribute to the light-headedness that many CFS patients experience. Uniformly, abnormal Holter monitoring is present in CFS patients. This additional criterion for diagnosis of CFS illness, namely abnormal Holter monitoring, to the CDC criteria for the diagnosis of CFS does not exclude any CFS patients included in the original CDC definition. The absence of abnormal Holter ECG testing indicates that these fatigued patients do not have CFS.

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