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  1. Yesterday
  2. Ditto what @toomanyproblems said. My doc gives me a script for steroids and I take as much as a need when I need them. He trusts me to figure it out day to day. Autoimmune diseases with hyperPOTS is tricky. Buy a BP machine just to keep an eye on things. What happened with me (usually), is that the better my autoimmune disease is doing, the better POTS is doing. Maybe that will happen with you. I ended up on DMARDs for autoimmune so that I don't have to use steroids as much. Hopefully you get good results from the steroids and they can move you to DMARDs with steroids for flares.
  3. I've been in the categories of undifferentiated connective tissue disease and mixed connective tissue disease for decades. Lots of symptoms. They told me people usually definitively develop lupus or RA eventually but I have not. My mom has RA and I'll sometimes have synovial nodules and swollen joints but still not RA positive. Nevertheless, my last rheumatologist did treat me with both plaquenil and when that didn't help enough, imuran, which is a pretty big gun. The imuran really helped. I felt close to normal for a long time. Unfortunately, when I acutely developed more POTS symptoms along with CRPS, gastroparesis and a few other problems, the imuran did not help them. I don't take it now. There's just so much wrong, and the risk with the imuran is not worth it given the total state of my health. It was my choice. I just wanted to let you know there's a wide range of willingness to treat based on the rheumatologist. My guy was the head of a large dept at a large well respected facility. I think he just had enough experience and confidence that it was the right thing to do. Sadly, he's since moved away. Good luck to you!
  4. I was sero negative for any autoimmune disease for thirty years before my ANA came up positive although I suspected AI for all of those years. Nobody would treat me until I had a positive one. I had a number of low level results but nothing positive enough for a definitive diagnosis so am labeled UCTD or MCTD depending on what my rheumatologist feels like calling it. I started on Plaquenil and that helped with fatigue, malaise, joint pain after about 6 months. Not tremendously but certainly noticeable. It has done nothing for BP/hr. My advice for the first visit is bring up every ache, pain, low grade fevers, mouth sores, malaise, dry eyes, joint pain, foot pain that you have. I never realized that the foot pain that had me buying new, expensive shoes was because my joints were swollen. I wasn’t terribly aware that my finger joints were swollen either but I knew I couldn’t get certain rings on my fingers anymore which was also a clue to him. In my experience rheumatologists are generally conservative and don’t want to treat without positive labs. I also have a positive on the Celltrend panel and my neurologist convinced my rheumatologist to allow SCIG. My choice of SC over IV because I already have migraines and am afraid of the aseptic meningitis. That’s helping a lot now too with AI symptoms but like Plaquenil, it’s taken several months. Still little effect on BP/HR but I am blood pooling less and BP/HR are reasonably stable. They will likely take blood unless your blood test results are recent. I had a number of tubes taken to rule out anything else and to test for further AI disease. It wasn’t the 24 I had taken by my neurologist to rule out everything for my diagnosis of dys but maybe 10-12. In my experience it seems that they make money off the blood work so everybody orders new tests. Please let us know how it goes.
  5. JimL

    Update

    No I haven't. Prior to my issues, I was doing Keto for 16 months and lost over 160lbs. 170+ at one point. Funny thing is since about 6 weeks after my neck surgery, I've put on 10 lbs, maybe a bit more. According to the HIGI machine at the supermarket, I've also gained about 6lbs LBM since my neck surgery. I am starting to wonder if my cervical issues have caused all of this. Doesn't explain the diplopia though.
  6. Yep. I am at my best when I am snacking every 2 hours. If I leave it any longer than say 4 hours I hit a wall and that's it for the day as I am totally faint, tired and exhausted.
  7. @JimL and @misseb: have you tried to cut down big meals and do 6 small snacks a day? This has helped me greatly for my dysautonomia related GI issues ( nausea, fatigue, post-prandial hypotension and syncope, hypoglycemia ) and I have even gained weight with it!!!
  8. Interesting. Unlike most POTs sufferers I am safer with what I eat earlier in the day than later. It gets more dangerous as the day goes on too. Last time I ate a large evening meal it put me in bed for two days. I have also observed that sugars are a problem, fruit especially, it's as if I am collecting fructose and sugar as the day goes on making me awful by the afternoon. My SIBO test was negative. Have you looked at SIBO ? Also something is happening in the night. I have read that mast cell activity is increased by the chemicals our bodies admit to aid sleep. I get really bad pains and cramps in my legs and huge adrenaline surges when I sometimes lie down. I have MCAS too. I had an MRI scan today on my small bowel for gastroparesis.
  9. @Clb75, @toomanyproblems: thank you so much for responding, you have given me a lot to consider before talking to my doc tomorrow. I truly appreciate your Input!!!
  10. JimL

    Update

    I have the most problems during and after my third meal. I wonder if I have some sort of gastropareisis. Not full blown, but slows stuff down enough to cause problems.
  11. I hear you on the reacting to everything you eat. I've had 5 weird heavy heavy fatigue unable to move attacks in 10 days, all food triggered. I am down to oatmeal too, and some white fish and salad. And small amounts or over the edge I go. Been looking for meal replacement drinks but there's so many triggers and gums in them I'm at a loss. Also unable to eat after 4/5 pm or the next day is a brain fog, light sensitive, in bed heavy fatigue right off. Pushing to see another GI specialist as can't get anyone to take me seriously.
  12. Even if they don't connect them, it seems like something else is wrong with me overall, so I'd really love them to find it. My expectations are pretty low, but I don't really know where else to turn for help with diagnosis and treatment (and I really don't love having autoimmunity going on unchecked). Thank you!
  13. I should add that some steroids have less mineralocorticoid activity than others. The ones with less will probably affect your BP less. However, the ones with less are stronger and last longer like dexamethasone, so there's a trade off wrt to weaning time.
  14. I have Sjogren's syndrome along with several other autoimmune conditions. Because one of them is Addison's, I have to do my own steroid merry-go-round on literally a day to day basis. My Drs just give me plenty and cut me loose and trust me to manage myself. I've been doing this over thirty years. Your individual response wrt BP will be dependent on many factors so it's really hard to predict. I likely have hyper POTS and my BP can be either too low or too high seemingly completely unrelated to external circumstances. I'm currently in a too low BP phase and I've been taking either increased Pred at about 20mg or injecting extra hydrocortisone at 10-30mg (and sometimes 50mg) depending on how I'm doing. Sometimes it raises my BP, sometimes not at all. (I'm taking the increased steroid for other symptoms not the low BP; they just happen to be accompanying the low BP.) I also get IVIg every three weeks, which, that alone tends to raise BP because it's very viscous. I also normally increase steroid around that time due to brain swelling I get as an adverse effect. Sometimes the steroid as IV before infusions (though it's still just my solu-cortef which is not as strong as the dexamethasone the above poster might be getting), sometimes oral (pred), sometimes injection solu-cortef as needed. Again, sometimes all of it causes increased BP for days sometimes not. Like cycle before last right after IVIg my BP was usually 140 something over 100 something first thing in the morning and the diastolic went higher as the day went on. This went on for days. This time it's 100 over 60 type of BP first thing in the morning and can drop to cause presyncope and SOB as the day progresses. When my BP decides to drop, it doesn't fool around. I've had times where I've gotten numbers like 50's over 30's and this is once I've made it back to the bed from a syncope episode so who knows how low it actually was. And more recently was passing out and managed to catch it at 52 over 40 while still standing. Sorry, I'm rambling, but my point is, my BP can vary wildly and extra steroids may affect is at times and at times it does nothing. Even extra florinef does nothing at least not for days. Another point is my Sjogren's waxes and wanes too, irrespective of steroid dose. Because of this, I don't know if I could tell if the steroid was affecting it or not. Mine may be improving because of IVIg but I became very symptomatic and peaked while on IVIg so IDK. Good luck with your decision. I'm not sure trying it would throw me into anything bad for a long period of time. Maybe it won't do it to you either. The Sjogren's symptoms can certainly be way more serious and debilitating that just dry eyes and mouth like you read so I understand.
  15. I have high plasma NE on standing and I'm on a high salt diet, too. I think the important point is why your NE is high. Is it high because your body is trying to compensate for low blood volume or excess veinous pooling? That is a different situation from primary hyperPOTS, where your body just makes lots of NE for no reason.
  16. I don’t have hyper pots but do have labile BP. Certain meds can send it through the roof as you say. I get a dose of IV steroids after my ivig infusion. The first dose I started at half the regular starting dose but it still shot my BP up by 20 points and stayed elevated for hours. It took 3 months for it not to react and to titrate up to the regular dose. I just started an oral steroid before the infusion but didn’t react to it, probably because my system was already used to it. Granted an iv dose is more potent than an oral dose, but I would be careful. Can you start at a lower dose and taper from there? My oral dose was supposed to start at a 40mg taper over 4 days but I started it at 30mg the first time, then went to 40mg the next time.
  17. Hi - I have hyperadrenergic POTS with both hypo-and hypertension. I am currently well controlled and my BP has been stable, thanks to IV fluids on a weekly basis as well as a myriad of meds. I recently experienced a severe double ear infection and developed an autoimmune reaction ( also have AS and now possible Sjogren's syndrome as well as other AI symptoms ). I will see a rheumatologist in the bear future but in the meantime am taking Turmeric ( cannot take NSAIDS ) and now am considering a trial of steroids. Here is where my question comes in: has anyone on this forum that deals with BP fluctuations from hyperPOTS had any negative effects from steroids? My autonomic specialist has warned me in the past that steroids would most likely send my BP through the roof, so I have been avoiding them. However - my symptoms are now serious enough that I want to try a trial of Prednisone or Medrol dose pack, despite the warning. Since my BP has been stable for over 6 months I am hopeful that all will be well but on the other hand I do not want to wake up the dragon ( meaning trigger POTS ). Any Input, warnings, encouragement or experiences? Thank you in advance.
  18. @RecipeForDisaster - based on your symptoms and a positive ANA they should be able to "label" you with autoimmune, and hopefully they will be able to treat you. Having said that - they may not address the orthostatic issues like your hypotension and syncope. Although research suggests that there is a link between dysautonomia and AI it is still a very new finding and I suppose it is possible that they want to just concentrate on the AI issues. So - I guess I am saying don't expect them to connect the two issues. But if they diagnose you and treat you for your AI related symptoms the dysautonomia might improve as well. Best of luck - think positive! Please keep us posted on your visit!!!
  19. @Petrichor11 - have they ever done an MRI? Have they considered a CSF leak?
  20. I have experienced this for years now! I can remember the day that it was triggered though. I had an intense coughing episode (I had a bad cold at the time, and am prone to coughing fits even when I'm just mildly sick.) But I coughed so hard that I felt an incredibly intense and painful sensation across the back of my head - like I had been electrocuted. I felt like passing out and nearly did. I regained my composure but shortly after that episode (within an hour) I returned to work from a lunch break and felt suddenly nauseous and weak, my vision completely flipped on its side and I was having such bad vertigo. I could hardly form words as well; I was coherent, but my speech felt drunken. An ambulance was called and by the time I made it to the hospital, I was feeling much better. They ran heart tests and everything checked out fine so they figured it was just a syncope episode. For nearly a year after that, I had trouble turning my head in certain positions because the zapping, dizzy sensation would return and almost knock me off my feet. I had trouble driving. I began developing other symptoms such as shortness of breath, inability to stand for long periods or maintain conversations. It's been about 4 years now - I still experience a lot of these symptoms, it's like my nervous system is completely fried. I get dizzy and disoriented incredibly easily now, I have to "manually" breathe a lot of the time because my brain will forget to do it automatically, I wake up gasping for air a lot at night. My social life has been terrible these last few years because I've developed panic attacks too :( Sometimes, I wonder if it was a mini stroke...some kind of brain stem damage? Dysautonomia (POTS) are all on my list of conditions I majorly identify with too. I've been reading a lot about the RCCX gene theory and Dr. Sharon Meglathery's research. Many members of my family are hypermobile - lots of contenders for EDS (Ehlers-Danlos Syndrome) but it's difficult to find someone who can diagnose. If anyone finds more information, please share!
  21. Last week
  22. Thanks. It really seems autoimmune to me, especially since no one can seem to figure out WHAT it is.... and I have lots of unexplained other stuff too. That's just what I was saying to a friend-I hope he's creative and determined. I can't imagine leaving another specialist's office with "not my problem" as a result! I didn't get much choice in this referral, so my fingers are crossed, but he's at a major, and good, hospital.
  23. Ask them if they diagnose serum negative autoimmune diseases. A significant percentage of RA and lupus and probably other patients never test positve with their bloodwork. They get what is called a 'clinical' diagnosis. That means, if it looks and acts like lupus, they call it lupus. There are also nebulous categories like Undifferentiated Connective Tissue disease and Mixed Connective Tissue disease. Do they diagnose those? With your test results you may start out with Undifferentiated Connective Tissue disease until something develops further. If they diagnose like that, do they treat it? Some places won't give you meds until your bloodwork is positive. It took 10 years for my bloodwork to be positive for RA, but I was lucky and got meds anyway. The RA meds have helped me tremendously. Do some research on this so you can go in with information on 'beginning' or 'almost' autoimmune diseases. Those are my terms, but it seems to fit many people I know. Good luck. I hope you get a progressive doctor who is willing to look at more than black and white.
  24. Hello! Who is the doctor in Columbia that y’all seem to like? Would like to look into an appt there... thx! S~
  25. I'll be going to a Brigham & Womens rheumatologist for the first time... in addition to this impossible to classify hypotensive/syncopal/orthostatic/tachycardic illness that I have, I have a persistently positive homogenous ANA and confirmed immunofluorescence. I do kind of feel flu like most of the time and have a chronic sore throat, plus a bad neck, back, and shoulders. I'm not really sure what to expect. If they are going to draw a ton of blood (I sent them a boatload of labs, imaging, notes...) I'll need IV fluids, but I'd rather not bring them on public transportation. I have had negative tests for lupus and rheumatoid factor, so I don't even know what we're looking for. Any input would be welcome!
  26. I've been having a lot of abdominal issues that go far beyond the standard realm. I live in Ohio and need to find a Neurogastroenterologist who also works with dysautonomia patients. Pain has been increasing & my PCP is of very little help. The Dr who diagnosed my dysautonomia is no longer in Ohio. The dinet physician list is seriously outdated - can anyone help?

  27. The first TTT I really don't remember it but feel like maybe it was a mild case of my knee buckling and the EEG stayed the same. Since then I have had Brain surgery and there is alot of artifact and did not have at tilt table during the spells. I get really bad looking seizure like activity after surgeries due to the anesthesia and I don't breathe. Sometimes I can hear people and not move. I slowly come to. MY last TTT was 2016 just to diagnose POTS and I did not pass out an no EEG. I go to the Vanderbilt Autonomic clinic. They are good but once they see something everything else is off the plate. I work and lead a normal life until I have an episode and then it takes me out of life for about 3 weeks or more. I am in a flare up now and was in hospital for 3 days getting fluids bc every time I stood up I would pass out. I have to go to a different hospital due to my insurance so it is frustrating bc those doctors see it and say yea probably from lack of blood flow to the head or oxygen. I take a Beta Blocker and the refuse to treat with IV fluids. I only see my family doctor and the Vanderbilt Autononomic Clinic This only happens maybe once a year if not longer unless I have some sort of anesthesia. I live a normal life otherwise and am going to turn 48 this week.
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