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.

[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 .

[antillus]

Sounds a lot like a pheochromocytoma

[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

[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.

[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]

"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) ???