Bendymeat

What meds are you on? I’m on topamax which has a possible side effect of metabolic acidosis. A buildup of lactic acid will definitely make your muscles tired. I was a patient of Prof. Mathias in London and had a second autonomic testing in June. I was unable to complete my recumbent bike exercise due to muscle tiredness. However, just 6 months prior, I had no problems at all. He recommended I get my lactic acid levels tested. Unfortunately, I moved back to the States a few days later (in July....it’s been a crazy year to say the least) and stopped taking the topamax for a while to see if I felt better. When I finally got my blood tested in August, my lactic acid was fine; however, my urine pH was 5.0. 🤨

I get these- usually when I’m resting. You know those jerks you get when you start falling asleep? Like that, but worse. I noticed that they started getting really bad last year when my POTs started. (My POTs started after surgery April 2017......actually after 2 bouts of back-to back Lyme disease in 2014/2015; however the surgery in 4/2017 is what made things go in high gear. I was bedridden for about 6 months or so after that surgery.) I also find the twitches are really bad when I have a migraine. The thing is I have acephalgic (silent) migraines where I have every symptom of a migraine minus the headache. It’s the only way I can tell a migraine from a POTs attack, actually. (A migraine lasts longer, i have the tremors/twitches, and i cannot wake up. My whole body goes limp/muscle weakness in both; however the migraine somnolence lasts much longer.)

I’m pretty sure this is my issue...even though all my MRIs have yet to show a leak. Or at least none of the radiologists have found the leak on my MRIs. They've found tarlov cysts in my cervical spine, mild dural ectasisa (thanks EDS!) and 2 herniations at C4 and C6. Oh- also my latest pituitary MRI in June showed *possibly* 2 microadenomas (they said have another pituitary study done in 6-12 months...). But no leaks. Even though I have fluid in my ears and twice nasal discharge (never duplicated in dr’s office, of course.) Crazy enough, I have terrible edema so one of my docs gave me Lasix and the most amazing thing happened. My daily headaches went away!! (Side note: I’m on topamax for my migraines and I’m wondering if it’s affecting my kidneys causing the edema.) For a while it was definitely helping all of my POTs symptoms- best couple of weeks I’ve had in a loooooong time! However, it doesn’t seem to be a long term solution since I’m in pretty bad shape all over again. That being said, still no daily headaches. I’ve never had an upright MRI to see if I have Chiari whilst upright (my newest neurologist said chiari has already been ruled out. He’s also said my case is too difficult for him and should find another dr......soooo.......) The first time I watched Kristen’s story (when she was talking with Dr. Carrol), my husband and I were floored at how similar our symptoms were. I just need to find a dr who believes me and who will help me find the leak(s). 😔

Thank you for the recommendation! Salisbury is a bit of a hike (3hrs) but I’ll gladly do that if I don’t find anything closer. Strange how there’s no info on Chung, especially since he’s at Hopkins.

Although I don’t know if I’m hyper POTs (though I’m pretty sure I am), this does happen to me quite often. Sometimes after eating cereal in the morning. Sometimes if I’m upright for too long. Sometimes if I’m excited about something and then calm down. Sometimes just because...? It sucks to not be able to move. I’m able to hear what’s going on around me but not able to respond- it’s awful! I describe it as being like one of those fainting goats- too much stress and BAM! down I go. I just have to wait it out- takes at least 10 minutes, depending on how long I pushed myself, to start being able to move my hands/open my eyes and start talking. Takes a while longer to “come back,” though. (If I had been upright or active for too long, it takes longer to start moving again.) I do think it has something to do with cortisol; however I wonder if cortisol levels fall too quickly due to the surge of adrenaline. So you have too little cortisol in your system and can’t handle the stress, thus the body shuts down.

Hello all- I’m new here and, like all y’all, am looking for answers. I moved back to the States this summer and am looking for doctors to help me. My family and I were in England where Prof. Mathias dx me with autonomic dysfunction but we left before we could get any further. My story is rather long, tbh- lots of threads weaving through to try to stitch together. I describe myself as a human Medical Venn Diagram. 😏I need a dr who will be willing and able to spend time with me- not just think, “Welp- here’s another POTs patient!” and give me the same ol’ same ol’ treatment b/c it doesn’t work for me. (That’s what Prof. Mathias did at first. I actually had 2 full autonomic testings with him, 7 months apart, b/c everything had changed so much.) ANYwho... I’m in the DC metro area and, after seeing a regular neurologist (total waste of time 😒), I have an appt with Abdallah at the end of January. However, I’m close enough to Hopkins to go there, as well. The only doctor I see listed there as a POTs specialist is Dr. Tae Chung. However, I’ve not seen anything in the various message boards about him. Does anyone here have any info on him? You’d think Hopkins would have a POTs clinic ala Mayo, but....I don’t think so...? I also am on the waiting list for Dr. Goodman in AZ. I’ve been waiting since October, soooo.....not too optimistic about that anymore. 😒 If anyone has any info on Chung, I’d greatly appreciate it! Thanks!

Hi bombsh3ll- I’m also currently in the UK and being seen by Prof Mathias and Dr. Matharu for chronic migraines. You mentioned a postpartum hemorrhage. I was wondering- have you had an MRI of your pituitary gland? You may be suffering from Sheehan’s syndrome which could also explain a whole lot of things. best of luck!