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Fighting with POTS like symptoms - Questions to veterans


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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!

 

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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!!!

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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!

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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.

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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.

 

 

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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 ). 

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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.

 

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@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! 

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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...

 

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