At loss with symptoms...

[gatsby]

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.

 

 

 

 

[gatsby]

Dear @DysautonmiaMatt

Thank you very much for answering me.

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For the brady maybe ask your doc for a trial of low dose propranolol.  I feel like crap when HR is too low. I have tried several betas and this one is the best for me. They make an immediate release as well as extended release.  You will have to play around to find your optimal dose.

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.

 

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Low B12 can cause a lot of problems. You should either take a sublingual form or ask doc about B12 injections to get you in the upper part of the range.  I also suggest you get your folate and thiamine levels tested and possible complete test for all vitamins etc.

 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.
 

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Good you are off the PPI as having enough acid is needed to digest food properly and kill bacteria.  For nausea you can try some ginger either tea or capsules or ask doc for Zofran as last resort.

 Thanks, will keep the ginger tea in mind.
My gastroenterologist also gave me an anti-nausea medicine, but I didn't try it yet.

 

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 I would recommend reading book by Dr Derrick Lonsdale Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition.

Thanks, definitely will look into this!

 

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I have not read anywhere so far that dysautonomia causes creatine levels to be high/poor kidney function so you might want to ask for more testing.

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.

 

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For GERD apple cider vinegar can be helpful - they make it in capsules if you can't stand the taste.

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.

 

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Because of long term PPI use and dysautonomia have you had a SIBO test done?  Do you have a history of yeast/fungal infections?

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?

 

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 I too take small amount of Xanax when needed. Besides the beta blocker it is the most helpful drug to manage my symptoms. 

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.

 

[MomtoGiuliana]

The last bad flare up of POTS I had my dr tested my B12 and it was 168.  She recommended B12 injections.  For some reason I felt worse after each injection.  So after maybe three injections, we stopped and I did sublingual for months and eventually got my B12 up.  Anyway, in my case, I do wonder if the low B12 triggered the flare up.  I was also having some minor neurological symptoms (tingling in my hands and mild weakness in my fingers) that cleared up after months of taking B12.  Low B12 is actually pretty common from what I have read.  It is difficult to absorb and becomes more so as we age.  It may not explain your symptoms, but wanted to share my experience.

Other than the low B12, as many of us, I have had many tests when in a bad flare up, all of which come back normal--except sometimes low potassium and low magnesium.  So I find I need to make sure I am eating and drinking foods rich in potassium and magnesium, especially when in a flare up.

[gatsby]

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.

[gatsby]

Dear @DysautonmiaMatt,
Thank you for answering my questions.

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Yes beta blockers slow the heart rate and can lower BP. Propranolol is a common beta blocker that many POTs patients take. They make it in 10mg + and been told it is not a strong beta blocker like some of them are especially at lower dosages. If Ivabradine is slowing your HR too much you should talk to your doctor about lowering dose or changing it for something else. I believe one of the pros of Ivabradine is that it does not effect BP.

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.
 

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B1 seems to be on low side. According to Dr Lonsdale it is very difficult to accurately test for thiamine levels.  I am still dealing with getting off Lexapro but intend on doing his suggested thiamine dosing to see if it cures/treats my dysautonomia so I can get off all the symptom management drugs I am on.  According to him lack of thiamine can cuase dysautonomia.

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? 

 

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I was hoping Lexapro would help all my symptoms but it made my anxiety worse among other things. Now that I am not taking it I am going through an adjustment period where my body has to normalize serotonin levels on its own. 

I don't know Lexapro, is that a SSRI?
I hope you'll adjust very soon.

 

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SIBO can happen with dysautonomia. My sister's kid has POTS and had SIBO.  She got a breath test I believe to diagnose it. Given your gut issues etc it would be good to see if you can get it done. 

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.