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Dear @DysautonmiaMatt, Thank you for answering my questions. Thanks for the info, I seemed to no do well with the beta blockers when I tried them, so I'm not sure I want to go that road again. I stopped my evening dose of Ivabradine for a few days, taking only 2.5mg in the morning. The bradycardia is better, around 51~55 lying down, and I don't experience significative tachycardia during the day, so it seems okay. But the chest and jaw tightness still comes and goes, relieved a little by benzos. Can't explain that, maybe GERD related, I can't tell. I watched the website you've recommended, definitely interesting infos there. Never heard of thiamine deficiency, and will look into that. I sure am disposed to try a B1 supplement, is there any dose/form of administration you recommend? I don't know Lexapro, is that a SSRI? I hope you'll adjust very soon. Thanks, I saw a SIBO breath test on the web here you can do at home, but it costs almost 500$, and I just can't afford it for now... I'm afraid Japan is unfortunately very unaware of conditions such as dysautonomia and SIBO. Thanks again for your precious advice.

Dear @MomtoGiuliana Thank you very much for your insight. I've just ordered some 1000 micrograms sublingual B12 supplement and will try it as soon as I get it. Well noted for the potassium and magnesium, will look into that as well! Best regards.

Dear @DysautonmiaMatt Thank you very much for answering me. Don't beta blockers slow HR rather than maintain it? I tried them once before and had a very bad chest pain reaction (my cardiologist suspected a coronary spasm, never confirmed though). I will talk with my cardiologist again on the 20th, but for now I am thinking of trying to cut my Ivabradine dose in evenings, and just take the morning one. Thanks for your advice. My folate was 6.3 ng/ml (the test says anything more than 4 is normal), and thiamine/B1 was 28 ng/ml (on a normal range of 24 to 66, so I guess on the low side?). Did you have symptoms form thiamine deficiency, and what were they? I will ask about sublingual B12 or injections, but 232 pg/ml doesn't qualify as deficiency here, so I'm pretty sure my doctor will discard it... I was (and am still now) on a daily 100 micrograms supplement when the blood test was made, so that tells me my natural B12 must be low though. Thanks, will keep the ginger tea in mind. My gastroenterologist also gave me an anti-nausea medicine, but I didn't try it yet. Thanks, definitely will look into this! Me neither. I wonder if years of PPI didn't damage my renal function? Seems like the values are not that bad yet, but I should keep an eye on it. I was told no additional testing was necessary. Thanks, will give a try! I now usually use Chinese medicine and an occasional H2 blocker, as PPI just didn't work on me anymore. I was wondering about that myself. I never had the test done, but I surely have signs of yeast infections, such as diarrhea, minor skin rashes and the white tongue... I wish I could test for SIBO and Candida right away, but I live in a small town in Japan, and these tests are not widely available. Do you think SIBO could be a cause for dysautonomia? I keep asking myself why do benzodiazepines have an effect on my chest pains, but am always reluctant to ask my cardiologist for some, as he already suspects my symptoms come from an anxiety disorder. When I of course know for sure it's not the case. Thank you so much for your advice and the links you sent me. A high CH50 looks like something not usual at all, so I wonder why my neurologist didn't even bother to talk to me about it. He just told me he found nothing I should worry about, and I just noticed it myself on the results. Do you think this asks for more investigations? Thanks again for taking the time to answer me, all of this helps tremendously.

Hello everyone, It has been two years since I have been diagnosed with POTS by a tilt test and put on Ivabradine, but I am still experiencing symptoms no investigations can explain, and been keeping reading this forum for help understanding this condition. As things haven’t been great recently and I’m a bit at loss on what I could do next, I am hoping I could get some advice from everyone here. I am now taking only 2.5 mg Ivabradine twice a day, morning and evening, and haven’t been bothered by tachycardia lately. My BP is often stable, between 11/7 and 13/8. The symptoms I do have are as follows : - Chest tightness that spreads to the jaw and neck and can last for hours. Only benzodiazepines such as Xanax, usually in small doses such as half of 0.25mg seem to improve it. - Bradycardia during evening and nighttime, around 47bpm, that may be accompanied by the above stated chest pain, and prevents me from sleeping. - On really bad days, strong nausea that doesn’t allow me to eat. - GERD and epigastric pain, especially after I drank alcohol (which I am avoiding now). I have stopped the PPI I had been taking for years 6 months ago, and use Chinese medicine that helps a little with this. - White and dry tongue. - Constant belching. - “Neurological” symptoms, such as sleep paralysis when about to fall asleep, vertigo and dizziness, pins and needles when I am about to sweat etc. - Recurring left blade shoulder pain, that comes and goes without reasons. I have had some tests recently, a chest and abdominal CT that revealed nothing except a very small nodule on my left lung, and a very small cyst on my pancreas that shouldn’t cause any symptoms according to the doctor. I also had a brain MRI which came back normal. My blood tests only revealed high creatinine for my age, B12 on the low side (232), igA on the high side (415), and high CH50 (not sure about what this means). I know those all are generic symptoms for dysautonomia, but if someone here has insights about this combination of symptoms, or anything at all, I would be very grateful. The cardiologist, gastroenterologist and neurologist I saw did the tests, and although they seem well-intentioned, they just don’t know dysautonomia or what they could do to alleviate my symptoms. Thanks to those who will take the time to read this, any advice is welcome! All the very best.

Hello @cmep37 and all my apologies for the delay, I was away of the computer for some time. Thank you so much for you detailed reply, it answered much of my questions! 172BPM only on standing, that must be really tough... Went up to 187BPM during the test and really felt I was dying. I hope you are managing to keep your POTS under control. Sorry to hear you couldn't tolerate Ivabradine. I keep taking 5mg twice a day, and had a few episodes where I would go down as low as 45BPM at night, but the cardiologist said it was not something I should worry about. It seems to help tremendously otherwise, although I still don't know how I will feel when I start exercising again. Thank you for these suggestions. For now I am still on the Mirtazapine, but not sure it actually does anything. My blood tests did not find any autoimmune illnesses. Regarding the head MRI, I did a brain CT scan last March that did not reveal anything. Never had a neck MRI though. I hope this is post-viral and my POTS will disappear quickly... Thank you so much for all your insights, this is a real help for me! All the best

Hello everyone, I hope you are all fine. I thought I would give news as my health problems evolved recently. As planned, I had a Tilt Test three weeks ago. Let me just add that it was really hard to find an hospital willing to let me pass the test in Paris. Not to scare anyone, this was by far the worst thing I did in my life medically. Tilting the table up, my HR went from 70 to 120 without BP change, as usual for me the last months. I stood like that for 30 minutes, which was already quite painful, but they then decided to inject me some Isuprel to provoke fainting. My HR immediately went to 180 and more, I fainted and the medics could not measure my BP anymore. Really thought I was dying for a second there... Anyways, upon these results, my cardiologist concluded I had dysautonomia. He put me on Ivabradine, 5mg morning and evening, and I am still on Diltiazem 100mg per day for my coronary spasm. The Ivabradine seems to do well on my HR, as I feel definitely slower and better with it than without. Sorry for the long report, I am just trying to be precise so these informations can hopefully help someone else facing the same problems. I would like to ask veterans here a few questions I still have regarding this condition. I feel like Ivabradine was more effective the first days, and I was wondering if anyone here had to increase their Ivabradine dose as they got used to it? I had quite a hard time dealing with all these health issues, and, my mental health being a little compromised, I was put on Mirtazapine, a medication against depression. Does anyone here have an experience with combining all these medications? Last question, my cardiologist said I might have to see a neurologist to search for the cause of my dysautonomia, although I suspect it has a viral cause (all my symptoms started after I had shingles). Do you believe I should investigate more or just stick with the treatment hoping it will go away? My deepest thanks to all who will read this post and take from their precious time to answer me. I hope you all are coping well in these very difficult times the world is in.

@yogini By the way, I did the poor man’s tilt test at home and I definitely go over +30 bpm every time I stand, almost instantly. My BP stays stable though...

@Pistol Thank you for these details on IV fluids! I guess I will have to take that tilt test before I can get any prescriptions anyway, but that is very useful information. Did not see any French physician on the physicians list of the site, but the cardiologist I am in contact with in Paris was talking about a tilt test, so I guess that means he has notions in dysautonomia. @yogini Thank you for taking the time to read my post and answer me! You're right I am still unsure of what are the causes of my chest pains. My cardiologist thought the stress test they use to diagnose coronary spasm is too heavy, and I should keep using the medication. But I must say I am a little bit worried about pulmonary hypertension, as I read it could lead to such symptoms (although I had an echography and a coronary scanner in march, and a pulmonary scintigraphy in June, and doubt they could have missed it...). You're perfectly right in suggesting I should investigate in other medications and causes before I assume I have dysautonomia. I will definitely talk with the French cardiologist about all these possibilities. Thank you again for your support!

Dear MomtoGiuliana Thank you very much for your advice. I would like to try IV fluids, but I need to be diagnosed as POTS before, which is not my case for the moment... Could you please enlighten me about what are in these fluids, and how do you administrate them by yourself? My cardiologist insisted I cannot use BBs as they will all give me chest pain. Thank you very much for your support.

Dear Pistol Thank you so much for taking the time to answer. This means a lot to me! In fact, I had read a post where you were talking of Prinzmetal and was hoping you would read my post! Thank you for all your answers. You confirm my feeling Diltiazem is not directly related to my POTS symptoms. I have a cardiologist appointment tomorrow and will talk with him about the BBs, although his view is that Prinzmetal patients should never touch any BB of any sorts. The thing is I never did the Prinzmetal stress test, so there is no way to be sure this indeed was the cause of my first chest pains. Regarding GI problems, I was already followed for GERD and esophagitis and have been on PPI for a few years now. So I am pretty sure I have no H.pylori or stomach infection (did a digestive endoscopy last March), and feel the belching could be related with my "new" symptoms. I didn't know shingles could trigger dysautonomia, did not look that bad when it happened... Could not suspect at the time such a little thing would turn in such debilitating symptoms. Thank you for all your advices regarding the airport and plane travel. I hope I can have that Tilt test in France and will definitely keep you updated. Thank you again for your kindness, Best of luck as well!

Hello everyone, I am new to this forum, a French guy living in Japan, 39 yo. I would like first to thank everyone posting on this forum, for it is a great information source for me lately. I allow myself to write this post as I am fighting with what looks like POTS (haven't been diagnosed, no Tilt test where I live) for 6 months. To briefly expose my situation, I first had shingles on my left chest in February, followed with cluster headaches I had 10 years before (but had disappeared since). In March, I started to experience horrible chest pain during the night and had heart examinations done. During two months I went through multiple ECG including 24h holter, heart echography, coronary scanner, chest scanner, blood tests, chest radiography and pulmonary scintigraphy... All normal. Back in March, I wasn't having any tachycardia, and the cardiologist thought I might have a coronary spasm (aka Prinzmetal angina) and put me on Diltiazem. I didn't feel very good from March to June, but the chest pain faded away. In June, I started to experience POTS symptoms, with my HR going from 55-60 laying to 120-140 immediately on standing, feeling dizzy and unable to move or exercise, with no drop in BP (usually around 120/80). Told the cardiologist, but he didn't take me seriously. I read POTS might be induced by Diltiazem (CCB), so I tried to stop taking it, but chest pain came back within 3 days and had to take it again. On my insisting, cardiologist prescribed me some BB (bisoprolol). Tried them for 3 days, but they made my chest pain come back as well and had to stop (they did make the tachycardia better btw). Which brings me to now, still experiencing orthostatic tachycardia and intolerance, dizziness even when I am sitting and feeling really tired and scared about it all... I am now taking licorice-based chinese medicine which seems to help a little with the HR (but not with the dizziness at all). I plan to go to France next week (although the trip will be quite hard) so I can hopefully pass a Tilt test. Being new to all these symptoms, I would like to ask the following to the people who have been fighting longer than me with this crazy syndrome. Do you think Diltiazem (CCB) could induce POTS? My cardiologist denies it, but I read it may provoke orthostatic hypotension (although I don't experience BP drops...) What has helped you with dizziness and blurred vision? I tried increasing fluids and compression stockings, but they don't seem to do much in my case. From the beginning of my chest pain symptoms (last March), I keep belching all the time, and particularly when I am unwell. Do you experience this and do you have any idea what might be happening? I still have chest pains, sometimes feeling like constrictions or burning, sometimes like my chest is hollow and empty. Do you think these are also POTS related? To finish this long post, I must say I first had shingles after coming back from France to Japan in last February. Reading POTS could appear in a post-viral situation, I can't help myself but thinking I might have caught asymptomatic COVID-19 in France, my symptoms now being post-viral... I did a COVID serological test that came back negative, and it is probably far too late to check now, but do any of you heard of people experiencing POTS post-COVID and if so, how are they coping wit it? Sorry for writing so much about my symptoms, but I was healthy before all this, and my cardiologist here keeps saying I am having a depression and should see a psychiatrist, although I know for sure this is not the case. It is so hard when everybody around you just don't seem to understand what you are going through... I am sure everybody on this forum knows the feeling. Hope some of you may have ideas regarding my doubts, and wish the best to all of you going through this difficult condition. Thank you!