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@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.

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.

Thanks Sushi. I looked her up and she sounds very promising.

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.

So exciting! Thanks for letting us know. I will definitely be asking about this.

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.

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.

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 😞

Can’t say I understand this entirely but what I do understand is interesting. Very different from current thinking. Baroreceptors in the brain as well as aortic arch https://www.nature.com/articles/s41467-019-13956-y

I am disabled and housebound, won my SSDI on first application which gives you an idea of how hard I was hit at 52 years old. Please appeal the ruling with your lawyer, just about everyone is refused the first time. I hope that you are seeing Dr B in Chicago, he’s excellent. If you aren’t please pm me and I will give you his name. A really great book that will help you and your family understand this illness is 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 includes sections for family, Drs, patients and has good tips on how to manage symptoms.

@Pistol check your BP after the cyclobenzaprine. You and I are quite similar and I have noticed that anything ending in “ine”, including Benadryl seriously raises my BP. The Benadryl really surprised me.

Is anybody seen at Mayo in Arizona? I have some questions. Do they do ongoing care or only diagnostics? I believe they don’t take Medicare? Thanks.

I agree with @KiminOrlando. I have a positive ANA, saw a good rheumatologist and started treatment which was the first thing that helped although not labile BP. Eventually he agreed with my neurologist and cardiologist that immunoglobulin therapy was warranted. I also had the Celltrend test (Germany) which came up positive. There’s a LOT of recent literature showing a link to autoimmune markers for many of us.

Yep, blood pooling. I only take quick lukewarm showers anymore. I still get it but not as bad if I take a hotter shower, that would really make me ill.

Oh @Pistol I am so sorry. I have been, and continue to be, in the same situation. I guess it depends on what type of pain it is. I have done fairly well with gabapentin for joint and nerve pain but everything except alprazolam for my neck muscle pain raises my BP. I have tried Skelaxin, orphenadrine, cyclobenzaprine and a couple of others in the muscle relaxant class. Tramadol also raises my BP. My Drs don’t like me taking benzos so I very, very rarely do. Massages and hot packs at PT once a week help for a day or two and I am considering a home massage therapist once a week too. Take care and I will be thinking of you.

I think I read some medical article that 80% of people with POTS do not pass out. I never have in 5.5 years. My neurologist did my TTT and they don’t give the nitro but I failed spectacularly anyway. The test was truly the absolute worst experience of my life. They have occasionally wanted to repeat it but I will not submit to that again unless there’s a really, really good reason. My catecholamines are elevated so I am hyper POTS and take alpha blockers to help with the adrenaline surges. My neurologist, a dysautonomia specialist who used to work at Mayo told me to not take benzodiazepines so I never have since diagnosis. I know many people do take them. Before my hypertension got out of control the one thing that raised my BP and therefore lowered my HR in the morning was to drink 12 ounces of water 10-15 minutes before getting out of bed.

I get them randomly too. Cardiologist isn’t worried. It lasts 15-20 minutes unpredictability but more so if I have been upright for longer than 10-15 minutes.

Oh @Pistol I am so sorry that you were in ICU for a week. Yikes. That’s scary that the nurse withheld your meds! You are a nurse and know so much about your condition and treatments that I am surprised (but not surprised) that he did it. It’s so difficult dealing with medical personnel that think they know our bodies better than we do. I hope that you are doing better now.

I have found that giving the meds a good 3-4 weeks and starting at tiny doses and increasing helps the fatigue. Clonidine really tanked my BP too.

Can you try methyldopa or guanfacine for the adrenaline? I found that methyldopa in particular did not lower my BP but did help with the other symptoms.

@Clueingforlooks I still have lots of trouble with hypertension from doing anything much, talking on the phone, being upright, getting stressed because of filling out forms, dealing with insurance/pharmacies etc but switched the alpha blocker from clonidine to guanfacine ER. The docs thought part of the trouble was rebound hypertension from the clonidine. We have increased the beta, carvedilol, and I take a small dose prior to activity but it’s still a lot of reacting, including fluid loading at times. I started limiting fluids and completely stopped salt which lowers BP but my latest kidney function tests showed probable dehydration so... I did a 24 hour blood pressure test that clearly showed the rise in BP while upright—161/93–but it went back down after sitting down and the overall balance of highs and lows was ok which is how they determine if it’s good control of BP or not for normal people. We are not normal and I doubt I ever will be again. Weather is a big influence on low BP so at the moment I am not dealing with that too much unless I have been upright too long or haven’t had enough fluid. I am sorry that you too are struggling with this, I hope that you can find a better balance than I can.

I still wall walk sometimes but I found leg exercises and especially balance exercises to reorient the propriorecptors (spelling?) in my ankles helps. My PT gave me the exercises.

I had this and still get it but it’s reduced since I started immunoglobulin therapy.

What about IV fluids? Some people use them regularly and there’s research to support it. That would bypass the gastrointestinal system entirely.

I am so sorry to hear that you are so ill @Stark I did get off TPN after 6 weeks. I hit some magic number—95 or 100 pounds—but I cannot recall exactly what. I am petite so I guess the gastroenterologist had something in mind. To be honest, I don’t recall a whole lot from that time, I was so very ill. I know that I was told to drink Boost which just made me sicker and eventually I found a protein drink that I drank a lot of between meals with high fat and lots of potatoes for carbs. I think it was Garden of Eden something. The exercise was extremely difficult and it still is because I suffer very badly from fatigue if I overdo it. Having said that I credit exercise with 33% of my improvements, meds with 33% and stubbornness with 33%. As I said above, I am still housebound but I am stronger and I will never willingly go back to being so weak again.