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Sarah Tee

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Everything posted by Sarah Tee

  1. @Caterpilly, yes, my diagnosis is OCHOS, which is low cerebral blood flow with no other problems (no tachycardia and no blood pressure changes on standing). I do hope the Stat gadget will be helpful for you. I would love one, but I live in Australia, so I’ll have to wait and see whether they release it here. Dr Peter Novak is the researcher. I don’t think he has found any antibodies for OCHOS – I think he is getting clues from people’s history that point towards immune involvement. He did try IVIg successfully on one patient who had OCHOS plus a lot of other issues, but I think the person was so unwell that they just decided to try IVIg knowing it was likely to help in general. (No mention of antibodies in the case study article, but I think it was written in a bit of a rush.) https://www.sciencedirect.com/science/article/pii/S2405650220300551?via%3Dihub In my case, I worked out that my symptoms were autoimmune based on partial remission after steroids, feeling better after IV albumin (it has transient immune modulating properties), and having another autoimmune disease start at the same time as my OI symptoms (ulcerative colitis). I do respond to vasodilators, such as calcium channel blockers, but am yet to find one I can tolerate at a sufficient dose. Right now I take a low dose that gets me out of bed at least. Hoping the two-pronged approach will work: a) Plaquenil reducing the antibodies or whatever is abnormally constricting my cerebral arteries, and b) vasodilators to reduce the constriction. (Some people with OCHOS have abnormal cerebral vasoconstriction, which actively stops the blood getting to the head. Others have low blood volume and blood pooling in the lower body, so enough blood just doesn’t make it to the head. I’m the first camp.) Sorry to hear mestinon didn’t help. It can be a long slog trying to find something that works.
  2. Found a trial of a biologic called efgartigimod in post-COVID POTS patients: https://clinicaltrials.gov/study/NCT05633407 Efgartigimod, also known as Vyvgart, is an antibody fragment that binds to the neonatal Fc receptor (FcRn), preventing FcRn from recycling immunoglobulin G (IgG) back into the blood. The medication causes a reduction in overall levels of IgG, including the abnormal AChR antibodies that are present in myasthenia gravis. (Sorry, I can only copy and paste!) It was developed to treat myasthenia gravis. The study, which is being conducted by the manufacturer of the drug, states: “Efgartigimod may be a viable treatment option for patients diagnosed with post-COVID-19 POTS because it has been shown to reduce IgG levels, including IgG autoantibodies, which may underlie some of the autonomic disease manifestations in these patients.”
  3. @Caterpilly, my prednisone was 25mg per day, which was given to settle an itching/hayfever attack that I coukdn’t get under control by other means. I hope the prednisone doesn’t make you feel too awful. If it does, maybe you can try hydrocortisone instead. (I should mention that I don’t have POTS, but something in the “POTS family” that has been described as probably autoimmune by the researcher who discovered it. He’s not my doctor, I just read his research.) I think it’s a good idea to start medications separately when possible. I’m writing a separate thread called ”The Plaquenil Diaries” to document my progress in case it is of help to anyone.
  4. @Clorato, if you want to search for studies, PubMed is a good place to start. Keep in mind that if a medication caused POTS-like symptoms, that would be described as side effects, not as “causing POTS”, beacuse POTS means your autonomic nervous system is not functioning properly and all other causes have been excluded. So a study might say that medication x caused postural tachycardia, or low blood pressure. But it wouldn’t say it caused POTS because there wouldn’t be autonomic dysfunction. So unless the medicine damaged your autonomic nervous system (a medication injury) and thereby caused POTS, any symptoms that went away when the medication was stopped would be considered side effects. I haven’t read of medications causing POTS, but having said that, research into the causes of POTS has a long way to go. It sounds like consulting with your doctor to change your birth control and then getting re-evaluated for autonomic symptoms would be a sensible option. P.S. Just to add to the complications, not everyone with POTS or OH feels better with increased salt and fluid intake. For some people, it makes no difference. Doctors don’t know why, but it could be because some people with orthostatic intolerance have low blood volume, and those are the people who feel better with extra salt and fluids.
  5. @Caterpilly, I hope it all goes well. I felt great on prednisone but rotten on hydrocortisone. It seems like people can sometimes tolerate a different steroid even after a bad reaction to another one. I had a sort of accidental trial. I was give five days of prednisone tablets for an itching attack. It settled down the itching, but also made my orthostatic symptoms better. And then, after the five days, I continued to feel benefits until gradually returning to baseline after about 3 months. I just started Plaquenil last week. So far, it’s going okay. Have felt a bit off when increasing the dose, but no worse than other off days I’ve had while unwell from non-medication causes. I’m only up to 100mg at this point, and need to get to 200mg. Not looking forward to the ~3 month wait to see whether it is effective!
  6. @Caterpilly, I really hope the Plaquenil helps you. So far, all I can find on biologics is a handful of case studies that describe people with POTS or SFN receiving a biologic for another condition and finding that it improved their autonomic symptoms. Here’s one written by Dr Blair Grubb in which the patient receives adalimumab (Humira) for ankylosing spondylitis and it also helps with her POTS symptoms: https://www.heartrhythmcasereports.com/article/S2214-0271(20)30241-4/fulltext I believe Dr Tae Chung at Johns Hopkins is also a passionate advocate for immune therapies for POTS patients who have not responded to anything else. So there are a few experts out there pushing, but it’s oh so slow.
  7. I made a silly mistake yesterday by taking the whole 100mg at breakfast. Felt seedy almost all day, bit of a headache, mild stomach pain, and generally off. Realised I can take two lots of 50mg roughly 12 hours apart at breakfast and dinner. Duh! Have done this today and am feeling much better than yesterday. I also read a few comments on managing the GI side effects on forums. People found it helpful to start on a lower dose, split the dose in two am and pm, and eat a bowl of plain oatmeal or something similarly bland before taking their tablets. There were mixed reports on overall timing. Some found having their whole dose in the morning was better, some found night better. Ditto for dairy products. Some found they had a cushioning effect, others did better after eliminating them (at least for the first month). I am already starting with a lower dose and splitting it am and pm. Will implement the oatmeal (actually porridge because I am half Scottish) tomorrow.
  8. Three fairly unevenful days have passed on 50mg (one quarter of prescribed dose), so today I have increased to 100mg. I did get a little bit of reflux one night, which can be a side effect, but I had had a couple of glasses of fizzy drink, so that may have contributed. I am therefore going to avoid reflux triggers in the evening, which won’t be too hard. And I will avoid fizzy drink altogether and switch to decaffeinated coffee for the next few weeks. Many people describe having dizziness, nausea, vomiting and diarrhoea in their first 2–4 weeks of Plaquenil, so I am a little apprehensive. I had my colon removed many years ago due to ulcerative colitis, so am slightly prone to dehydration. Normally this only shows up if I get gastro, when I will be more affected than your average person and might need IV saline if I am vomiting. This has only happened twice in 25 years, and the hospital staff were quite happy to rehydrate me. Not like the struggle folks with POTS have! I suspect having part of my bowel missing also makes me more sensitive to some GI side effects, but we will see. Mestinon really did a number on me last year. That was a lesson to always start medications at a lower dose if possible. I can take rehydration salts etc. but spending the day dashing to the loo on top of everything else … ugh.
  9. Hmm, I was not told this by an endocrinologist (who supervised first try) or a clinical pharmacologist and autonomic specialist (supervised second try). They only mentioned keeping an eye on potassium. I also referred to p.14 of this handout by Dr Peter Rowe. He doesn’t mention anything about needing to come off it, and mentions that people are likely to need it long term, as it is not a “cure”. http://www.dysautonomiainternational.org/pdf/RoweOIsummary.pdf Having said that, I had a search online and a couple of places mentioned that it was dangerous to stop taking it suddenly after having taken it for a while in case your adrenal glands were producing less of what they usually do. https://www.goodrx.com/fludrocortisone/what-is#warnings But there’s no reference to read further. And this info is for people taking it for other reasons. And it doesn’t say what dose is likely to suppress adrenal function. I wonder if Dysautonomia International could help? This might have come up in the Q&A at a conference.
  10. @Pistol, thank you, I will give it a try soon.
  11. Dr Novak has stated that some cases of OCHOS are auto-immune in origin. https://www.sciencedirect.com/science/article/pii/S2405650220300551?via%3Dihub In this case study, he treats a patient with OCHOS, SFN and some other problems with IVIg with some successs. (I don’t have SFN.) I don’t know whether he has tried other immune treatments on his OCHOS patients, but am making it my mission to find out!
  12. My notes on starting Plaquenil (because hydroxychloroquine is too hard to type). This is a big deal for me. It’s the first treatment in 19 years that gets towards the cause of my OCHOS; namely, my flaky immune system. Of course, I would also be happy to treat the symptoms, but I’m having trouble finding a vasodilator or combo of vasodilators that I can tolerate. My prescription for Plaquenil from the rheumatologist is 400mg per day, to be taken all at once in the morning with food. If taken as directed, the tablets will last 100 days, about three months. But I am starting slowly, with 50mg per day, then 100mg. I am keen to avoid the common side effect of diarrhoea. Don’t know if starting slowly will make any difference. I took my first dose yesterday and woke up this morning feeling dreadful, but I’m not sure it’s connected. I made pizza last night and slept on the couch because I was too tired to move after making the pizza! I told my dad that I felt like I’d been chess-boxing. He didn’t know what chess-boxing was. Off to take dose no. 2.
  13. @MikeO, that looks delicious! I tried making hummus some years ago and it was a disaster. Inedible (and I usually don’t throw food away). When I feel better, I must try it again with all the tips here and your photo as inspiration.
  14. @MikeO, @Pistol, thank you for the info. I am contemplating asking my rheumatologist or autonomic specialist to contact Dr Novak in the US and ask him if he uses any immune treatments on patients with OCHOS, or what he does with patients like me who have trouble tolerating vasodilating meds. I know he used IVIg on one patient with OCHOS, because he published a case study about it. So I suspect he might use “lower level” immune treatments as well. Problem is my autonomic specialist is very unconfident and fears going outside his comfort zone. Rheumatologist is more likely to be open to the idea, but as I am a new patient I will hold off for a bit before asking for favours.
  15. @mehaller, I do hope it helps. Fingers crossed for you!
  16. @MTRJ75, that is very interesting about the carotid scan. I seem to recall that one research paper on cerebral hypoperfusion during TTT used four measurement points on each subject, including the carotid. I imagine it was because researchers wanted to see whether the points differed. If I remember correctly, all points showed similar reductions in blood flow velocity during the tilt test. (Unfortunately, I can’t find the paper right now. I think it was one of the ones by Visser, van Campen, Rowe, et al.) However, in my reading of papers a few months ago, most researchers seemed to use the middle cerebral artery. Not sure why. Might just be the most convenient. I did read that, in perhaps 10% of patients, the thickness of the skull and other normal variations in anatomy make transcranial Doppler imaging impossible. But maybe they can be scanned at the carotid instead of on the head? I think you are right to assume that POTS could be the cause of the low blood flow finding on your scan. Do you remember how the test was done, lying or sitting? (Just an idle question on my part.) I have been nagging my specialist to order me transcranial Doppler testing, medicated and unmedicated, to prove that I have cerebral hypoperfusion that resolves with vasodilators, which basically proves OCHOS. He has not been keen. He kept saying “Oh, but they might say no” and I kept saying “I realise that, but you won’t know until you ask”. He sometimes behaves like a an unconfident teenager who doesn’t want to make a phone call about a part-time job. I recognise myself aged 17 in him. I feel for him, as lacking confidence is horrible, and he is only recently qualified as a specialist and doesn’t have his own rooms yet, but at the same time he is 30 something years old and getting paid a lot of money. So I am whiling away this hot day in Asutralia reading about cerebral hypoperfusion while I wait for my next appointment and hope he didn’t say anything stupid to the neurology department to put them off testing me …
  17. Probably not. I think it was done more for research purposes, to see whether cerebral hypoperfusion could be contributing to brain fog and cognitive problems in Sjogren’s patients. If you have Sjogren’s syndrome and can get diagnosed with autonomic OI problems via a tilt table test, then you don’t need transcranial Doppler testing as well, because the abnormalities in blood pressure and heart rate are sufficient. The cerebral hypoperfusion can be inferred as going along with POTS or OH. If you have Sjogren’s syndrome with OI problems but nothing shows up on a standard TTT, then having a TTT with transcranial Doppler ultrasound added on could help by showing whether your cerebral blood flow is dropping independently of your blood pressure and heart rate. Then your doctors would know to pursue treatments that might help, such as volume expansion. A different scenario might be adding proof of cerebral hypoperfusion to help with a claim for insurance or government support, if you weren’t getting anywhere. This might be easier to get checked via a SPECT scan, depending on the access in your area to either that or transcranial Doppler. I know of somebody with POTS who had a SPECT scan that, even though taken supine, showed reduced perfusion to some parts of her brain. She had this in order to help her claim government disability support. I imagine it would be hard to argue with “reduced blood flow to the brain”, as opposed to trying to get bureaucrats to understand brain fog in Sjogren’s or POTS. But this was just a single case, and I don’t know whether people with Sjögren’s, POTS or similar would necessarily show lack of perfusion to the brain on a SPECT scan. I can’t find any research on it. The person I encountered was being looked after by Australia’s top POTS specialist, who has access to resources that maybe your average specialist wouldn’t. He ordered the test in order to try to help with her support claim, knowing how unwell she was, rather than knowing that it would affect her treatment or even necessarily show anything abnormal. But obviously he must have had a hunch that it would, knowing her cognitive problems.
  18. @CharlieJacks, welcome to the forum. I would suggest that you start recording your blood pressure and heart rate, as well as your symptoms, episodes, activity, and any other information you think might be relevant. For example, feeling worse in hot or cold weather, or after meals. For the blood pressure and heart rate, it is good to take “resting” readings at the same time each day as well as readings during an episode (if possible). Resting readings need to be taken in a certain way. The dot points on this page give good instructions: https://theskepticalcardiologist.com/hypertension-high-blood-pressure/ Also, you may find it useful to learn the meaning of the term “orthostatic intolerance” and do a little reading on it. Good luck taking the first step with your GP and please do come back and ask more questions if needed. And folks here are always ready to offer support too.
  19. @MaineDoug, I’m so sorry you are having to deal with other people’s poor communication and lack of co-ordination. In the olden days, I suppose a good GP/PCP would take care of all this, but they seem to have died out. Your endocrinologist sounds awesome!
  20. It’s my impression that doctors have a sort of brotherhood (for want of a better word) that means they can contact each other to ask for advice about difficult or unusual cases, even across jurisdictions and borders. Am I right about this?
  21. @MikeO, I agree, we have to work on this individually, and also get help from other patients. I know that’s true to some extent for all medical problems, but I do find it hard having no medical support to speak of. I now have three medical conditions that are rare and are only able to be treated properly by a handful of specialists in the US or Europe. I can read their research, and watch their lectures, but the specialists here in Australia appear to be less educated than I am. Sadly I can’t do my own bowel surgery, write my own prescriptions, or order my own neurological testing. Too bad because I know exactly what the research recommends! (Okay, the bowel sugery would take practice. But there is a robot-assisted version in the Netherlands!)
  22. @MaineDoug, I’m not sure whether I had a CRP test. The rheumatologist did a basic panel of about ten things and all came back normal. I will ask for a copy of my results at the next appointment. Nobody know which antibodies to test for in OCHOS yet. Dr Novak might look at it one day, but there aren’t many of us so I’m not sure if it will happen in my lifetime. I suppose he is reluctant to prescribe anything that has risks of permanent damage or infection due to a lowered immune system because “I’m not sick enough”. I also have no aches, pains, fevers or inflammation in my joints. I am a bit of an oddball in terms of being treated by a rheumatologist. I do have an immunologist in mind as well, who was recommended to me in some patient groups as very intelligent, but that means more long exhausting car trips to the nearest city. Not silly questions at all. I am at the point where I want to pin doctors to the wall and tell them at length how this has affected my life for 18 years, how I can’t work, can’t think clearly, have emotional dysregulation, fatigue, etc. etc. It’s affected so many things. Relationships with family and friends, my career (or lack of one), stress levels, personal development, menatl health. So don’t tell me I am not sick enough!!! At the same time, the rheumatologist spoke very sensibly about the risks of infection that come with the big gun medications, not only “catching things” from other people, but also the risk from the normal pathogens on your body and in the environment that are usually no problem but could lead to hospitalisation when you are immune compromised.
  23. After reading all the research on hypoperfusion in autonomic conditions and CFS that’s been coming out lately, I wondered if anyone had checked for it in Sjögren’s syndrome. It seems likely it would be found given the close connection between SS and autonomic problems. And sure enough, I found two studies. One goes into it in some detail, but is behind a paywall. The other is free but only touches on it as it is a review article. “Intracranial hemodynamic changes in primary Sjögren syndrome: a transcranial Doppler case-control study” (behind paywall) https://link.springer.com/article/10.1007/s10072-015-2204-3 “Cognitive Function in Primary Sjögren’s Syndrome: A Systematic Review” (available) https://www.mdpi.com/2076-3425/9/4/85 I also saw in Dr Peter Novak’s lecture at the Dysautonomia Intnl conference last year that he and other dostors from Brigham and Women’s are about to release research showing cerebral hypoprefusion in people with Ehlers-Danlos syndrome, and not just in those with POTS. (I am keeping an eye out for the paper and hope it will be out soon.)
  24. IV albumin is another treatment that appears to have an immune-modulating effect, alongside its volume-expanding properties. (I wrote a long thread about this with lots of links that you can find by searching this forum.) It has been used with some success over the last decade or so for refractory POTS patients in Canada in combination with IV saline. Seems to be mostly given to paediatric (teenage) patients. Has to be done fairly frequently and comes with the problems of IV access.
  25. Also, here is a an article on LDN in post COVID: https://pubmed.ncbi.nlm.nih.gov/37804660/ Presumably some of the patients had orthostatic intolerance and other autonomic symptoms. (I haven’t read the paper.) I note that Mitchel Miglis is a co-author. He has given several lectures over the years for Dysautonomia International. I believe he worked with Dr David Kem on some very interesting research in the auto-immune area. Dr Kem sadly passed away in 2020, but his ideas and research have inspired many: https://dysautonomiainternational.org/blog/wordpress/in-memoriam-dr-david-kem/
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