gatsby Posted September 10, 2020 Report Share Posted September 10, 2020 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! Quote Link to comment Share on other sites More sharing options...
Pistol Posted September 10, 2020 Report Share Posted September 10, 2020 Dear @gatsby- welcome to the forum, and I am so sorry you are having such a difficult time. I can relate to some of your problems and maybe this can be helpful. I take diltiazem for both HPOTS ( which causes high BP from excessive constriction of blood vessels ) and Prinz metal angina. It does help immensely with both the high BP and the angina, since it dilates the blood vessels. I am familiar with the chest pain you experience. Do you think Diltiazem (CCB) could induce POTS? No, I do not. It can CAUSE POTS like symptoms from vasodilation while you are on it but as far as I know this will go away when you stop the medication. Dizziness and orthostatic hypotension can be a side effect but not a permanent one. I 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 know that dysautonomia in general can affect the digestive system, so it is possible that it is caused by that. A gastroenterologist could test you and shed some light on that. It also could be related to H. Pylori, a stomach infection, or dietary sensitivities. If you have increased your water and salt intake to help with the POTS-like symptoms it could also cause bloating and belching. 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? It could be - but it could also be related to the bloating. Chest pain in general is a common symptoms in POTS. 2 hours ago, gatsby said: 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). First of all - beta blockers can take a few weeks before all of the side effects go away, the body needs to adjust to them. However - most POTS sufferers do not tolerate just any Beta Blocker, and you may have to try a few before you find the one that helps. I myself tried several, including Bisoprolol, but respond best to Carvelidol, which has also alpha-blocking qualities. With your symptoms and the fact that your HR rises upon standing like that POTS could be a possible cause in your case IMO. Shingles - like any viral infection - can potentially cause dysautonomia, so it could be what triggered it for you. It is good that you are going back to France for a TTT. In the mean time I would try the usual recommended treatment of increased water and salt intake as well as compression hose. You could ask your doctor to try a different beta blocker as well. I hope you will be able to tolerate the flight to France. Personally I recommend using the wheel chair assistance for transport at the airport - I would not be able to make it through the airport without it. While in the air make sure you get up regularly to exercise your leg muscles and prevent blood pooling. Best of Luck, please keep us updated on your progress!!! Quote Link to comment Share on other sites More sharing options...
gatsby Posted September 10, 2020 Author Report Share Posted September 10, 2020 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! Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted September 10, 2020 Report Share Posted September 10, 2020 When I have severe POTS flare up fluids and salt orally only helps a bit. I have found that IV fluids 2-3 times per week helps a great deal more. Digestive symptoms are quite common with POTS. I agree that any viral infection can trigger POTS and it can be an infection that itself seems mild. My specialist has said that any inflammation can potentially trigger POTS. Quote Link to comment Share on other sites More sharing options...
gatsby Posted September 12, 2020 Author Report Share Posted September 12, 2020 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. Quote Link to comment Share on other sites More sharing options...
Pistol Posted September 12, 2020 Report Share Posted September 12, 2020 2 hours ago, gatsby said: Could you please enlighten me about what are in these fluids, and how do you administrate them by yourself? Dear @gatsby - I get IV fluids at home through a port. IV fluids used for POTS are either Normal Saline or Lactated Ringer's Solution ( a mix of electrolytes and Saline ). In POTS they are used either to correct underlying low blood volume or prevent the sympathetic NS from overcompensating with excessive vasoconstriction. IV fluids are a known yet not always accepted treatment of some POTS symptoms, and they are not commonly used in all countries. I know that for example the UK does not use them for POTS ( based on posts from readers of this forum ). I am not sure what the rules are in France or Japan, but here in the US you can get them in infusion centers or certain clinics with an order from your GP. My sisters in Germany ( who also have POTS ) get them through their GP in his office. In my case they were the only treatment to help with my severe symptoms, so my doctors agreed to an implanted port and I have a nurse come to my house to take care of the port. ( Implanted ports for IV fluids are a very controversial subject here in the US ). In general POTS patients are recommended to drink A LOT of fluids to stay hydrated, along with increased salt intake. That alone can help in many cases. In a few cases drinking is not enough and IV fluids become an option. For now I would try increasing fluid and salt intake and see if you can get a TTT in France. There may be cardiologists in France that are knowledgeable in dysautonomia and how to treat it. ( See our ohysician list under the physician tab on this web site ). Quote Link to comment Share on other sites More sharing options...
yogini Posted September 12, 2020 Report Share Posted September 12, 2020 Hi. Did you ever figure out the cause of your chest pains? And did they give you different options of medications you can take to treat them? I am not a doctor but I would guess there is more than one medicine available and experimenting with the medicines might help you figure out whether the dysautonomia-like symptoms are a side effect of your current medication, or whether you actually have dysautonomia. Treating dysautonomia is possible, but it can be a very long journey of trial and error and one that you really don't want to go down if you can avoid it by swapping out the chest pain medication. If you don't have access to a tilt table test, you can do a poor man's tilt at home. (You can google or search the forum of the instructions) Did your doctor advise you on whether the chest pain medication could impact your tilt table results? That is also something to think about before you take the test. Quote Link to comment Share on other sites More sharing options...
gatsby Posted September 13, 2020 Author Report Share Posted September 13, 2020 @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! Quote Link to comment Share on other sites More sharing options...
gatsby Posted September 13, 2020 Author Report Share Posted September 13, 2020 @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... Quote Link to comment Share on other sites More sharing options...
yogini Posted September 14, 2020 Report Share Posted September 14, 2020 No change in BP is required for POTS. I hope you get some answers and start to feel better soon. On 9/13/2020 at 12:13 AM, gatsby said: @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... Quote Link to comment Share on other sites More sharing options...
gatsby Posted November 9, 2020 Author Report Share Posted November 9, 2020 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. Quote Link to comment Share on other sites More sharing options...
cmep37 Posted November 9, 2020 Report Share Posted November 9, 2020 5 hours ago, gatsby said: Not to scare anyone, this was by far the worst thing I did in my life medically. I'm really sorry to hear that - mine wasn't too bad but I think that's because I'm so used to having severe symptoms. On my TTT my HR went from 96BPM to 172BPM within 15 minutes - the technician and doctor carrying out the test decided to stop it there as my HR was still climbing and they got scared! I've seen higher figures on my BP monitor when I'm in a bad flare so although I felt awful during the test I've felt worse! 5 hours ago, gatsby said: 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 think it's quite common for doctors to start POTS patients at a low dose and then work up if necessary. Personally I couldn't tolerate 2.5 mg of Ivabradine once a day without terrible bradycard.ia in the evenings but I think you can take up to 7.5mg twice a day. 5 hours ago, gatsby said: 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? I've not taken Mirtazapine but I take Trazodone which is a tricyclic antidepressant like Mirtazapine to help me sleep. Some doctors prefer to use SSRIs or SNRIs in POTS patients as they can suppress the sympathetic nervous system so if you don't get on with Mirtazapine you might want to try something like Venlafaxine. 5 hours ago, gatsby said: 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? You probably know that dysautonomia can be primary or secondary (caused by another illness). Presumably your cardiologist was thinking you might want to rule out that another illness is the root cause of your dysautonomia as if it is then treating the other illness can sometimes get rid of the dysautonomia. Things like Chiari malformation, cervical stenosis or some brain tumors can all cause POTS and if you are concerned an MRI of your head and neck would rule out any of these. However, about 50% of POTS cases are post-viral and if you were healthy before having shingles and have no other symptoms then you are probably in that category. I think I read somewhere that about half of post-viral POTS patients make a good recovery after a few years so fingers crossed you are in that category! Quote Link to comment Share on other sites More sharing options...
gatsby Posted December 7, 2020 Author Report Share Posted December 7, 2020 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! On 11/10/2020 at 4:06 AM, cmep37 said: I'm really sorry to hear that - mine wasn't too bad but I think that's because I'm so used to having severe symptoms. On my TTT my HR went from 96BPM to 172BPM within 15 minutes - the technician and doctor carrying out the test decided to stop it there as my HR was still climbing and they got scared! I've seen higher figures on my BP monitor when I'm in a bad flare so although I felt awful during the test I've felt worse! 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. Quote I think it's quite common for doctors to start POTS patients at a low dose and then work up if necessary. Personally I couldn't tolerate 2.5 mg of Ivabradine once a day without terrible bradycard.ia in the evenings but I think you can take up to 7.5mg twice a day. 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. Quote I've not taken Mirtazapine but I take Trazodone which is a tricyclic antidepressant like Mirtazapine to help me sleep. Some doctors prefer to use SSRIs or SNRIs in POTS patients as they can suppress the sympathetic nervous system so if you don't get on with Mirtazapine you might want to try something like Venlafaxine. Thank you for these suggestions. For now I am still on the Mirtazapine, but not sure it actually does anything. Quote You probably know that dysautonomia can be primary or secondary (caused by another illness). Presumably your cardiologist was thinking you might want to rule out that another illness is the root cause of your dysautonomia as if it is then treating the other illness can sometimes get rid of the dysautonomia. Things like Chiari malformation, cervical stenosis or some brain tumors can all cause POTS and if you are concerned an MRI of your head and neck would rule out any of these. However, about 50% of POTS cases are post-viral and if you were healthy before having shingles and have no other symptoms then you are probably in that category. I think I read somewhere that about half of post-viral POTS patients make a good recovery after a few years so fingers crossed you are in that category! 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 Quote Link to comment Share on other sites More sharing options...
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