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

[rhonda1017]

Hi,

    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.

[molly0]

Could it be caused by medication you are taking?

[Buffie123]

What is the age of the patient, Did they mention MSA or pure autonomic dsyfunction?

[halbashes]

I'm sorry to hear about your troubling symptoms.  Have you ever had an EEG, or seen a Neurologist about these symptoms?

[rhonda1017]

Hi,

     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.
Rhonda

[rhonda1017]

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.

Rhonda

[PlateletGal]

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 ?

[rhonda1017]

Hi!

     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
Nausea
Chest pressure/pain
Frequent Headaches
Shortness of Breath
Difficulty Sleeping
Fatigue
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.

Rhonda

[debkrolls]

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?

[PlateletGal]

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

http://www.meactionuk.org.uk/What_Is_ME_What_Is_CFS.htm


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.

Best,

PlateletGal

[halbashes]

I believe MSA stands for Multiple System Atrophy, also called Shy-Drager Syndrome.

[rhonda1017]

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.

Rhonda

[PlateletGal]

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.

Best,

PlateletGal

[debkrolls]

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.

[debkrolls]

I ended up having Ehlers-Danlos
Marshall can't gix that, nut Low Dose Naltrexone sure makes a great dent in all the symptoms.

[PlateletGal]

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.

[PlateletGal]

P.S. ~ You may want to google, "Paul Cheney, M.D.. Ph.D" + "diastolic cardiomyopathy".

[PlateletGal]

"I was started on 20 milligrams of Benicar, which was increased to 40 milligrams after two weeks. At the time, I also had an infection, and was taking Minocycline."

Hi Ryan,

Thank you for your comments. I find everything you've said very interesting. I was on the  Marshall Protocol for CFS. I started out with Benicar (40 MG 3 X daily) and eventually added Minocycline to the mix. I'm wondering if your symptoms were due to severe herxing (AKA: Jarisch-Herxheimer reaction) ???

[PlateletGal]

"Benicar, when given to healthy people, causes a very mild depression in blood pressure (the FDA has told us that it is the least effective of all the pressor drugs) and no side effects beyond dizziness. But when given to sick people, as we have found, it has a profound effect, due to the immunopathology."

~Dr. Trevor Marshall, Ph.D.

[PlateletGal]

What Dr. Marshall also says is that the Benicar allows your immune system to 'see' and eliminate intracellular bacteria. He believes that intraceullular bacteria is the underlying cause of many illnesses.

I know if my physician had me on the Benicar and then gave me a FULL dose of Minocycline... that I would be in trouble. I had to slowly add the Minocycline to the mix and started taking only 25 MG every 48 hours. It was amazing what a small dose of minocycline along with the Benicar could do. I had herxing symptoms and felt worse as a result.

The Marshall Protocol is a research protocol. You can google for more information.

[rhonda1017]

Hi,

     Thanks for all of the information.  I have been gone for the past 9 days and haven't been able to check my email.
     Ryan, I did have a 24 hr. urine test done at Cleveland Clinic and they did a Cat Scan of my abdomen to see if my adrenal gland had a tumor and it wasn't present.  I received all of my information from MAYO and they will be doing the other tests that you mentioned out there again.  I have many other tests they plan on administering, too.  My doctor just had to up my medication again as my average blood pressure during the day was 168/115 and my heart rate was 169.  I really hope they can find something to control the B/P, because if they can't it is going to damage my heart.  So, far I have been lucky and my heart is still okay, but the doctors told me that it can't withstand those numbers indefinetly.  This is the 4th time since March that they have had to double my medication.  My body seems to ignore the medication after about 3 weeks and everything starts going back up again.
    Plateletgirl thanks for the information about the Marshall Protocol.  I will be looking into more information about this.  Please send me any information that you have and I will google it.  I have found that you have to be an advocate for yourself and proactive in your medical issues.  Some doctors just don't understand or think you are having anxiety attacks.  But, anxiety attacks don't happen 24/7.
    I would appreciate your prayers within the next month.  I am to be weened off ALL of my medications by October 4th for my tests scheduled at MAYO.  I all ready have a difficult time and I can't imagine how things are going to be with no meds.  I look like someone having a seizure at times with the meds.  So, needless to say I am nervous about being off all meds.

Thanks for everything,
Rhonda

[antillus]

Sounds a lot like a pheochromocytoma

[buddysmom1]

When I first started with dysautonomia I sounded just like you, I had involuntary twitches and tremors and all the things you have that was nine months ago I was tested for everything they were so sure I had a pheochromocytoma that I was sent to NIH and tested negitive. Had very bad head tremors still have them sometimes, I was unable to walk without holding on too something and then only to bed and bathroom I thought I was going to die. I tested positive for pots too, they also thought I had to have something else besides pots, well I have been to Vanderbilt and all over the place and not one MD could tell me what I had they never thought I had MSA though. I was very weak and could not eat I lost 40 lbs and though I was going to die. I had all your symptoms and more. Slowly they have gotten better what I feel really helped me was a clonodine patch .1mg per day I can tell you when I get off of it like I had too for Vanderbilt recently it was hell. What finally made sense too me was my sympathic nervous system for some reason went haywire and they just don't know. I can tell you I am better it took me until Jan and I had been sick since May of last year, I still have a lot of issues but not like I did before I still have high heart rates at times but usually not over 110's even when I am walking. I still have tremors but not as bad as before, I still get some mini inadvertant movements but none like it was so keep you chin up I really thing you need to get on the right meds now my BP hardly ever gets above 120's over 80 unless I am having a very bad day , I drink a lot and the big difference was once I had control over my BP and heart rates I also take atenlol 12.5mg every day. I could function again so don't let them scare you it could be pots the hyperadnergic type and with the proper meds and exercise you will improve, I felt like my life was over and at times now I doo also but I keep pluggin along and everyday I see a little improvement. If you need to e mail me privately give me you e mail .

[anointed5609]

Wow! I've been searching and searching for answers or clues to what I've been experiancing.I  have all the symtoms that rhonda talks about. I have a doctor appointment on  Thursday hoping my doctor can help me in these areas.I have first noticed these issues back in 2006 but they went away for about 2 1/2 years.Now they are back stronger than ever and I'm afraid to drive.It hurts and after the tremors or seizure like symptoms and certain parts of my body feels like it's on fire. I feel trapped in my own body but thanks for the info,it was very insightful

[dmp2012]

ummm, i've read some of your comments and symptoms and I have to admit that I too have experienced this as well. After a good workout or cracking my knuckles, my thumb or middle finger will twitch like crazy. I also get this twitching feeling in my legs near my knees and in the bicep part of my arm. I recently went to a physician and was told that I have high blood pressure as well. My B/P is only 156/108 but still its abnormally high for someone my age. I haven't been to a doctor yet, so i'm wondering should I go and check this out. Please comments and concerns are welcome.

[Heiferly]

Can both of you start new threads with your topics?  (Click the "Post a Question" button near the top of this page to do so.)  I'm afraid your posts are buried at the bottom of this outdated thread (from the summer of 08) and are not going to get the attention they deserve in our forum.  

Looking forward to getting to know you both better,
Heiferly.

[sacox88]

I have POTS an this past year I started having convulsions that resemble grand mal seizures but they are not... Were still trying to figure it out I have them every four months an last summer lost my memory for 2 months. Anytime I have one I lose speech, being able to see or walk

[debkrolls]

Hey, thats me! Ehlers-Danlos ended up to be my problem.

[Lightforpotspatients]

Yes, I have been diagnosed with POTS and also have severe tremors that shake my entire body, especially from the stomach area out to the rest of my body. It can last for hours, and my blood pressure is not low during this. A clonidine transdermal patch and clonazepam help significantly. The problem with Clonazepam, though, is that it will stop working, so you have to take a small dose and taper off it when you don't need it so that it will work when you have another "seizure" episode. I, too, am trying to find out what can better help. Sleeping well and avoiding lots of sensory stimulation (I wear earplugs a lot) helps. I hope and pray that the medical community comes up with a good answer, but I have also received significant help from healing prayer teams such as the one at ibethel.org. You can Skype with them on Saturdays and Thursdays, and they will pray for you.