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I am new to this site and first of all I would just like to say that you all have built a really beautiful community. It’s great to see people communicating and researching together when other sources of assistance have seemed to fail them. Personally, I know a lot of your tips have helped my functionality and explanations have helped me to understand better what could be going on with my body. So, I thank you very graciously.
I have had an ongoing history of joint pain and symptoms that appeared to be caused by some sort of allergy (eczema went I was young, hives, etc.) as well as chest pain and shortness of breath (I had been to the ER twice and to a few doctors – they said everything checked out okay heartwise. I recently got sicker in November of last year when I started to get daily flushing episodes with meals that made me feel like I had the flu and sometimes made me sleep for hours after, worsening joint pain, increasing fatigue, and what appeared to be tremors (my hands seemed to shake pretty consistently and my shaking would get worse/become full body shaking if I sat a long time and then moved around and sat again). Numerous doctors and a few months later, I ended up at Mayo Clinic trying to convince them that I had something going on with my autonomic nervous system. They reluctantly agreed to run an autonomic panel and it showed I had POTS and a “hyperadrenergic state” (I think that was due to my blood pressure going up to 190/something during state IV of the valsalva maneuver they ran). They ran tests for the “tremors” and what had now become jerking movements with my head and neck and didn’t find anything so they labeled it a “functional movement disorder”.
Additionally, I’ve been suspecting mast cell involvement for awhile now and anti-histamines and watching what I eat has improved some of my symptoms. I’m also suspecting EDS type III currently – I’ve had a least some joint pain since I was younger, seem to have some hypermobililty of joints, and have been noticing popping or “stuck” joints more recently.
Now that you have some background, my question for all of you is do any of you have any issues with movement problems, shaking, or tremors? And if so, do you have any techniques of coping with those episodes? One happened in an interview yesterday and I think I was sort of smooth :), but it’s definitely a concerning issue. I think these movement problems could be associated with my POTS since putting my feet up sometimes relieves the intensity and abrupt changes in position can trigger these “spells”. I’ve read some about tremors being an issue with hyperadrenergic POTS and I was wondering if this is similar. I’m also not sure what category my POTS fits into. I have high blood pressures at times but other times it can drop lower (100/high 50s) which seems a little different from those that have hyperadrenergic POTS. I’ve only had 24-urine norepinephrine taken and that was in range (not sure how different this would be from a blood serum standing collection). I’d appreciate anything I can learn from all of you – so thanks in advance!
Hi optunia! Welcome! You sound SO much like me in my first 3 years or so. I had the worst tremor — especially in my right hand, and if you’ve seen my vids, you know I also have the hyperadrenergic form. In this form, our norepi levels can be incredibly high, and this alone can cause a tremor. On the TTT I shook so hard they said it would have been fun to put some bells on me. Ha. I also had a friend who, while we were talking, suddenly jerked his head to the side (and then back). It was NOT a voluntary movement. All of these things went away for me (and my friend) with Diamox and I wonder if you have any symptoms of hydrocephalus? I used to have leg jerks and nearly kicked my hubby out of the bed a few times! 😉 I think my electrolytes were off and it was about then that I started taking magnesium more seriously, and that helped. I’ll be curious to see what others have experienced. 😉
I think I do have some symptoms of hydrocephalus – I get that terrible headache at the base of my skull that radiates down the shoulders, motion sickness, and ringing in my ears (I also sometimes hear a whooshing sound in my ears when I stand up). I also have visual issues – I have double vision again (I had strabismus surgery about 10 years ago which corrected it until recently) and sometimes my vision seems to blur. I’ve been wondering if these visual symptoms are due to high intracranial pressure or just another symptom of POTS (since sometimes I notice it when I get dizzy).
I think I do have some symptoms of hydrocephalus – I get that terrible headache at the base of my skull that radiates down the shoulders, motion sickness, and ringing in my ears (I also sometimes hear a whooshing sound in my ears when I stand up). I also have visual issues – I have double vision again (I had strabismus surgery about 10 years ago which corrected it until recently) and sometimes my vision seems to blur. I’ve been wondering if these visual symptoms are due to high intracranial pressure or just another symptom of POTS (since sometimes I notice it when I get dizzy).
Opuntia, Can you please fill out a symptoms checklist for me and email it back to me at Clinical_Trials@Prettyill.com? You can find it under “Articles and Handouts” (at front page, look to the right and scroll down. Now click on it and again scroll down until you see Symptoms Checklist for Chronic Fatigue/M.E.. You can fill it out on-line and shoot it back to me, or print it (narrow margin setting), scan and email it back. It should tell me what we need to do. If you need help with being evaluated for hydrocephalus, just holler! I now have a specialist who is working with me on this! Yeah! When you send the checklist back, can you just let me know if you need help? Awesome! 😉
Hello
I’m. To sure if its to late to reply to this but I get the most awful jaw tremours when I’ve stood or go to the loo anything can set it off it vibrates my whole head and sometimes it creeps down my whole body. After the full body ones I’m exhausted for hours but as soon as I stand or do anything it will start again. Also I have found I have to sleep sitting up but this really hurts my back and unfortunately my joints still need replacing in the morning. Or also the tremours are so bad sometimes they actually leave me with us lunatics and dislocations. Has anyone else has this? I also have the feeling of overwhelming emotions at this times. I watched your hyperadergenic pots video and I can definatly see that these are what it might be. But I also go the other way fainting cold and hot sweats fatigue and bowel and bladder issues.
The only thing I’ve found that helps is the sleeping upright xHello
I’m. To sure if its to late to reply to this but I get the most awful jaw tremours when I’ve stood or go to the loo anything can set it off it vibrates my whole head and sometimes it creeps down my whole body. After the full body ones I’m exhausted for hours but as soon as I stand or do anything it will start again. Also I have found I have to sleep sitting up but this really hurts my back and unfortunately my joints still need replacing in the morning. Or also the tremours are so bad sometimes they actually leave me with us lunatics and dislocations. Has anyone else has this? I also have the feeling of overwhelming emotions at this times. I watched your hyperadergenic pots video and I can definatly see that these are what it might be. But I also go the other way fainting cold and hot sweats fatigue and bowel and bladder issues.
The only thing I’ve found that helps is the sleeping upright xHi Carrie, We are all complicated patients, and it is really impossible (and unwise) to just throw out a guess with no *real* info about you, of course. Having said that, many of us develop a form of hydrocephalus, and cannot “drain” CSF well, especially lying down. This forces us to try to sleep sitting up. I do wonder if that is occurring with you, among other things. Are you able to come to Texas, perhaps, to be evaluated? Hang in, Hon…
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