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This is why seeing a knowledgeable dysautonomia specialist is so very important.  I am lucky that I have two in my backyard so to speak.  My neurologist tested me for the AChR antibody among others on my second appointment.  That appointment was 6 hours long and included an EMG and TTT and 24 tubes of blood for tests.  I believe the Mayo panel includes the AChR, so in those places that specialize they are applying the research.  I don’t go to a big research center but my neurologist worked at Mayo previously.  I was told that rheumatologists are very hesitant to treat without positive blood work and I believe that’s true.  However my neurologist persuaded my rheumatologist to agree to SCIG therapy based on new research showing autoimmune causes. It’s a matter of finding the Drs that stay up to date on research and listen to us.  I know that is difficult but there are a fair number now prescribing IG therapy.  I feel so badly for those that can’t travel to one of these places but I think it’s definitely worth it if you can.

Oh I am so sorry that you experienced that.  She is so far out of line I am speechless.  Definitely file a complaint or if you can have an attorney draft something .  I have had such good luck with PT , it really does help, but you need a compassionate, understanding therapist.  What I do know about Medicare and PT is that you have to show improvement at the evaluations that are required every few months.  It doesn’t have to be great improvement but something.  I have been going for 3 years now and have real, significant improvement.  One thing my therapist does every visit is check and *document* my orthostatic vitals, then asks me a slew of questions about symptoms-length of time upright and symptoms, headaches and how painful, muscle aches, fatigue etc.  we use it as a way to document not only improvement but flares etc.  I think when anyone sees the orthostatic vitals they understand some of what we are up against.  Please don’t give up on PT but find a good therapist or as Bombshell suggests maybe a personal trainer that will come to your house although insurance won’t cover it.

I am so happy for you!  It’s unfortunate that you had to go through 5 years of h*ll to get to this realization.  Can you please tell us what tests you had that lead to this diagnosis? Thanks.

@Starkthank you so much for posting this.  Anything that bolsters the existing evidence that this is autoimmune for many of us is very welcome.  I have seen my greatest improvements with SCIG after testing positive for the alpha a-1 antibody on the Celltrend test.  There are existing treatments that help although they definitely don’t cure this disease.  I welcome this further evidence and if a better treatment comes in 10 or 30 years I will welcome it with open arms.  No, I don’t want to wait that long but I will because I will have to.

I am 57 now, diagnosed at 52 and at that time I had very low BPs most of the time.  About 2 years ago at 55 my gyn started me on HRT which was a mistake because it sent my BP soaring.  It was routinely 140/85 mornings supine then dropped on standing to 110/80 and rose as the day went on.  Highest was 190/99.  My cardiologist said what many here have said, temporary is ok but in my case it was similar to a normal persons with rises during the daytime consistently. He also said not to worry or go to the ER unless it was 180/90+ sustained.  I think it’s just my body is finally done with menopause and now I am experiencing what many women do, hypertension post menopause. I went on clonidine (I have hyper POTS) which made everything worse, supine hypertension, rebound hypertension and orthostatic hypotension.  Eventually, thanks to Pistol, I found guanfacine ER for hyper pots and carvedilol for BP.  It took a few months of messing with the dose but I am doing well with reasonable BPs-120-130/80s sitting with some orthostatic hypotension and higher BP supine and at Dr visits but drinking fluids ameliorates that.  I guess don’t panic, it’s fairly normal for women with dys of our age to go through this.  My neuro said onset for dys is usually around menarche and menopause in women and it takes a few years to get over it.  Please let us know how you get on.

 I have an Omron series 10 monitor that I have checked at my Drs to see how it reads compared to theirs and it is spot on.  I had a Welch-Allyn that read from 20-40 points higher than the Drs.  They were happy to have me bring them in to check.

I am just throwing out my own experience here.  Take it or leave it.  I had reflux before POTS caused by a pill not going down all the way and burning part of my esophagus.  I was put on ppis, just about all of them and I got severe diarrhea so it’s possible that is a side effect for you too.  When I was at my worst with dys I had what they thought might be GERD because I had severe pain in that area.  I told my gastroenterologist that it felt like I was eating glass.  After losing 20 pounds in 2 weeks because I couldn’t eat I was hospitalized and had an endoscopy.  No sigh of GERD or inflammation.  The gastro and dys neurologist decided it was neuropathy and I was put on gabapentin.  It took a couple of weeks to work while I was on TPN but it worked brilliantly.  I still take a low dose.  

@DizzyPopcornyou too.

@DizzyPopcornmy list of meds is horrifying but yes, they help quite a bit.  It has taken 4.5 years to find a decent combination of meds that help but it’s always changing.  Seasons, allergies, life all contribute to flares and sometimes things just stop working.

I had a rear molar, second from the back , not a wisdom tooth, removed last year.  It was out in seconds!  I was stunned. The oral surgeon knew about POTS because,  as he said, he works with a lot of young women.  I had laughing gas and non-epinephrine (absolutely critical for those of us with hyper POTS) anesthetic.  I also had two root canals this summer after the preparation for a bridge caused severe pain.  With a great endodontist those were ok too.  She did have to do a procedure where she drilled into the bone to do the anesthesic but it worked great, she just had to repeat it more often because of the shorter time it works compared to the epinephrine type.  So, find a really good oral surgeon, maybe ask on a dys Facebook page for your state and ask other people but don’t be too afraid.  Definitely ask the dentist for a referral and call and ask to speak with them before any surgery.

@KiminOrlandoyou don’t need a Dr’s order for the Celltrend test but it’s a huge hassle getting the blood to Germany, at least it was for me.  Having said that, my neurologist used my positive for alpha a-1 (I think) antibodies along with my autoimmune disease (UCTD) to convince my insurance (Medicare) and pharmacy benefit manager to cover SCIG (my choice over IV). She also used it to convince my rheumatologist, who, like yours, was resistant, to agree to it. The SCIG is making a real difference in many ways, especially the fatigue, malaise, overstimulation  and joint pain.  It isn’t doing a lot yet for the BP/HR but the nerves take a long time to regrow and I have been on it for about 10 months now.  Medicare covers it for me.  It’s definitely worth the effort and with Dr Grubb’s latest research showing 89% of POTS patients have the alpha a-1 antibody I think for many of us it is autoimmune.  Using this research should, in theory, help the case.

@Derek1987mitrazapine is in a different class of drugs from Benadryl. Benadryl is an antihistamine and mitrazapine is classed as an antidepressant with some antihistamine properties but it acts differently than tricyclic or SSRI/SRNI antidepressants.  It’s action on the alpha receptors is why I think it helps me sleep, I have hyper POTS.  I also take extended release guanfacine which is an alpha blocker and that helps with all the surges.

@KaciCrochetsmitrazapine is the only med that allows me to sleep through the night.  It works differently than antidepressants and sleep meds. This is off Wikipedia, not my favorite source but it describes the pharmacology well, especially why it works for us Mirtazapine has antihistamine, α₂-blocker, and antiserotonergic activity.^[7][72] It is specifically a potent antagonist or inverse agonist of the α_2A-, α_2B-, and α_2C-adrenergic receptors, the serotonin 5-HT_2A, 5-HT_2C, and the histamine H₁ receptor.^[7][72]. 

Very interesting but I couldn’t get the link to work so here’s another link https://www.sciencemag.org/news/2019/09/hormone-secreted-bones-may-help-us-escape-danger. It would be great if there’s a drug that could block this.  Thanks for posting.

I think they would have to pry my AI meds out of my hands.  I know I would be just like you.  The two I am on have been so helpful.  I hope that you get the new one soon. It seems so much research is showing dys is AI in many of us. Hard to argue with given what’s happening to you.  Please let us know when you start the new med and how it goes.

@Pistolisn’t it amazing when you get that kind of epiphany?  It’s better than winning the lottery to me.  I am happy that you figured it out and especially that you shared it with us.

@KaciCrochetsI know we have/had the same Dr.  can you call/message her asking for a script?  I prefer methyldopa or guanfacine ER to clonidine.

I use a prescription nasal spray and take Singulair which helps.

Arguments are evil.  I never can sleep after one of our rare arguments.  Kaci is spot on, the norepinephrine just dumps.  Being on alpha blockers has really helped me but I still get overstimulated very easily.

I was really bad with this for years and still have trouble even with phone calls.  I am home bound, pretty isolated but treating AI disease, meds alpha and beta blockers and PT have helped a lot.  Panning and zooming in TV shows doesn’t bother me as much and I can do a phone call on occasion if it’s a good day.  I believe the medical term is overstimulation and most research relates to autism.  I had one neuro tell me it was from pain free migraines but I couldn’t tolerate the prophylactic drugs recommended.

Are you hyper POTS?  Before I started an alpha blocker I would get this overwhelming feeling of dread in the afternoon.  It was awful.  Getting physically stronger through PT and sleeping along with the alpha blocker help.

There are some recent studies showing anticholinergic drugs (it’s a class of drugs) and benzodiazepines increase the risk of Alzheimer’s significantly.  Google it and you will find the articles.  I really liked the mitrazapine, I slept 8 hours straight through frequently.  Not always but probably 4-5 nights per week.

It was a nightmare getting my blood to Germany to Celltrend.  It had to go via FedEx with a bunch of forms one of which I wasn’t told about that resulted in the blood being held up in Denmark for 2 days.  The local place wasn’t terribly well versed in sending blood overseas.  I also had trouble finding a lab that would give me back my blood!  Crazy and that took much longer than I thought it would.  The lab at the place the neurologist who ordered the test (you didn’t need a Drs order for the test, just to get the blood drawn) wouldn’t give me the blood.  It was worth it because my pharmacy benefits manager accepted the test and approved the IG which is very expensive otherwise.

I stopped taking mitrazapine for sleep because of the new research on anticholinergics and Alzheimer’s.  My dad and half his siblings had it but I have tried a couple of other sleep meds since and I got 3 hours sleep last night.  Very reminiscent of when I first became ill.  I did screw up my guanfacine dose yesterday though so that likely contributed.  I feel soooooo much better with decent sleep.  I am going to do more research on mitrazapine though as I found one article that said it has no to little anticholinergic effects.  It’s a very interesting drug for us as it hits different receptors than most other sleep meds.

@Pistolwell, I love the story behind your name!  My family should have called me that too!  Have you recovered yet?

Thank you so much for posting this!  The findings are exactly what my Celltrend tests showed.  Alpha a-1 autoantibodies.  My first improvement came from Plaquenil and my recent improvement is from SCIG, both autoimmune drugs.  Plaquenil did nothing for my BP/HR and I am not yet certain about the SCIG is helping those either but fevers, muscle aches, joint pain and swelling, fatigue, digestion are all better.  Now if I could find something for the insomnia that isn’t an anticholinergic I would be happy.  I am lucky that my neurologist and cardiologist always believed mine was autoimmune.  I did test positive on the ANA eventually and was diagnosed with UCTD and that’s why my rheumatologist started Plaquenil.  My neurologist talked him into SCIG and after 10 months of that I am doing things I haven’t in years.  I am in no way cured and still suffer terribly from fatigue but if I schedule things appropriately I can actually do some stuff outside home.  Again my sincere thanks for posting this!