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.

[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.

[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.

[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.

[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.

[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.

[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