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p8d

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About p8d

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    Female
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    Wisconsin

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  1. I agree completely with @Pistol she knows her stuff. I used to get those out of body/staring experiences when I was at my worst and had overdone anything. I still get them when I flare badly but I never thought they were seizures. I don’t get them unless I am very poorly and right now my stress level is playing havoc with my symptoms. Please take care.
  2. @KaciCrochetsI know we used to have the same Drs and just wanted to let you know that at the time I was mis(diagnosed) as not having hyper POTS in 2015 it was discovered that the lab was not doing the test correctly. After repeatedly complaining about the sweating/shaking/tremulousness/feelings of doom like clockwork around 4 in the afternoon (and after they discovered a problem with how the lab was doing the tests) I was retested and found to have it. I don’t know if the initial test was during the TTT and I wasn’t left prone long enough or what but Dr D at that time listed me as “probable hyper”. I got hysterical after 15 minutes upright which is definitely NOT my personality, I only lasted 16 minutes and they had enough to diagnose me so put me down. Dr D called me stoic during the EMG test which hurt like h@ll so the hysteria was obviously physical. I was diagnosed with the proper test by the NP a few months later. I have been on various alpha blockers to sometimes good effect since but still get lots of elevated BP with activity/talking on the phone /concentration/ anything my body perceives as “stress”. I have noticed since this d*mn virus kicked off that I get quite anxious with elevated BP about 4pm again. I presume that the alpha blocker is wearing off at that time because I take the next dose around 5pm. It might also be why I wake up around 3-4 in the morning recently. So @Abe I have listed a number of symptoms in this. I should note that I had TERRIBLE insomnia and digestive issues (diarrhea) for years which I think might be related to the hyper aspect.
  3. @Pistol does the diltiazem help with the spikes or cause ortho hypotension? Thanks.
  4. @Pistol and I are strangely similar for not being related! On her advice I am now on coreg and guanfacine but they don’t stop my spikes. I spike from anything my body perceives as stress—phone calls, upright too long (varies on fluid intake and amount of time), strong emotions, being in moving vehicles, Dr appointments etc. etc. I tried clonidine which caused rebound hypertension badly, methyldopa which didn’t seem to help and now guanfacine which I like but doesn’t stop the spikes. My cardiologist has me take an extra low dose of coreg an hour or so before anything “stressful” which helps. I have noticed 2 things that directly impact my spikes—fluid intake, I tend to feel weird and HR can be high and BP low an hour before I do something outside the house (I am housebound) so I drink 8+ ounces of water and an hour later BP is 170+/90+, I obviously have to stop this and the other are any drugs that end in “ine”—diphenhydramine, my sleep med mitrazipine and caffeine are examples. Right now I have stopped these and am desperate for a good nights sleep. I see my neurologist this week and will ask about Wellbutrin and next time I see the cardiologist in April will ask about diltiazem. I do wonder about a benzo instead of the extra coreg or diltiazem since mine seem directly related to stress but I know my neurologist is opposed to them in dys. I am on SCIG which helps a lot with many symptoms but not yet BP. @Pistol do you take the diltiazem daily or as needed?
  5. I sway back and forth and feel like I am on a boat at every neurologist visit when they do orthostatic vitals. It’s usually after I have been standing still for 3-10 minutes. I have hyper POTS and it might be related in my case to my BP going up but I am not positive. I virtually never stand still that long except for this check at the neuro’s office. I have done this since I was diagnosed on many, many different meds.
  6. I feel your pain, we all do at times. While I have accepted my illness/life I get the occasional bad day where it feels like too much. Hang in there. As Scarlett said “tomorrow is another day” and hopefully less symptomatic.
  7. Oh I am so sorry that you are going through this. I agree with what everyone else has said. I come armed with articles, relevant sections highlighted, a list of questions and always try to see a specialist nurse practitioner. I have NP s for both cardiology and neurology. They have 45 minute appointments as opposed to 20 for the actual doctors and are both brilliant about dysautonomia. If they don’t know they ask the doctors. If I am seeing my male cardiologist, who tends to shrug and say “well, you’re autonomic nervous system doesn’t work properly” if I have stumped him, I always make my husband come into the room with me. Unfortunately, that helps. I am not being sexist guys, just stating a fact that we women understand well.
  8. @Robert J congratulations on getting to ABD! That in and of itself is worth celebrating, ESPECIALLY with this awful condition. I finished my PhD 2 years before I got full blown POTS and had to stop working. I simply couldn’t have done any of it as sick as I became, I couldn’t even stand up for a couple of minutes. I can no longer read anything even remotely “difficult” (ha!) like long magazine articles. I used to read legal documents for fun to give you an idea. Brain hypoperfusion is real! Like Pistol, I have those same triggers as part of my hyper POTS. Meds help, as does exercise but I, too, am home bound and have to completely avoid those triggers or my BP soars, the fatigue is terrible etc etc. You should be proud of your accomplishments and now focus that same determination on getting as well as you can, no matter what that is.
  9. I have UCTD too which showed up about a year after my hyper POTS diagnosis but I suspected autoimmune disease for 20+ years. I had sudden onset POTS after a bad virus, the classic autoimmune trigger. My first visit with a cardiologist (after 2 years of treatment by my neurologist) for new onset of seriously high BP spikes and hypertension generally he said because of the positive ANA I should get immunoglobulin therapy. After I started this, subcutaneously, lots of things improved but I still get hypotension and BP spikes with ANY “stressful” activity—upright too long, talking on the phone, going to dr appointments, trying to think hard, emotional upset or PT etc. Pistol and I are eerily similar and I am on several of the drugs she is (my Drs are very willing to listen and try things) except IV fluids and the immunoglobulins for me. My neurologist is very against benzodiazepines too but personally I think they might help with very limited use, it’s something that I plan to ask about at my next appointments. If I know that I am going to be doing something stressful I take an extra beta blocker or if I will be upright for >10 minutes I drink extra fluids. They help but not enough for a normal life. I recently discovered that drugs ending “ine”, diphenhydramine, mitrazipine (which I used for sleep) cause hypertension so I have stopped them and in general my BP is lower but it hasn’t stopped the spikes. That’s the SNS going nuts and I haven’t found anything that stops that yet.
  10. Thanks Sushi. I looked her up and she sounds very promising.
  11. I am just trying to figure out how I might do in that climate and if there are any local Drs that treat dysautonomia. I hope to be accepted at Mayo but always prefer a PCP with knowledge. Thanks.
  12. So exciting! Thanks for letting us know. I will definitely be asking about this.
  13. I took ubiquinol for years and recently weaned off. I haven’t noticed a difference but I have started so many other therapies since I started including for autoimmune disease. My neurologist recommended it because some study a few years ago found increased energy on ubiquinol as opposed to coQ 10.
  14. Get this book The Dysautonomia Project. https://www.amazon.com/Dysautonomia-Project-Understanding-Autonomic-Physicians/dp/1938842243?SubscriptionId=AKIAILSHYYTFIVPWUY6Q&tag=duckduckgo-d-20&linkCode=xm2&camp=2025&creative=165953&creativeASIN=1938842243 It’s written for patients, family and doctors that might not be familiar with dysautonomia. Lots of advice on how to live with this. Absolutely exercise, starting slowly is essential.
  15. I get that feeling too. It’s so hard to describe to medical providers. I think tremulous is their term. I had it horribly on my TTT and still get it if I am upright too long. I think it’s when my BP is too low and I have tachycardia. It’s just an awful feeling that sometimes goes along with shaking, sweating, lightheadedness, chest pain etc. I know I had no heart issues on my TTT so I don’t think it’s heart related. I do better if I plan to be upright by drinking some fluid 10-15 minutes beforehand but that sometimes overshoots my BP 😞
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