Betahistine

[MeAgain...]

Hi, Everyone.

My ENT just prescribed betahistine to help me cope with the copious amounts of salt that my cardiologist wants me to ingest. I was wondering if anyone here with POTS or similar has taken it. 

Thanks.

Meg

[MikeO]

I am not familiar with Betahistine so i looked it up out of curiosity. I searched the dinet forums and found a few references to the drug. Seems like it is used for vertigo and maybe nausea. If i may ask what symptoms are is your ENT tring to address?

I also googled Betahistine and found a reference to treating PVD (found this interesting) also looks to be not available in the US outside of a compounding pharmacy.

  

[MeAgain...]

Thanks, MikeO.

Yeah, I have something with symptoms similar to meniere's disease. I have been treating it successfully with a very low sodium diet for several years. Now that I need high sodium to treat POTS it is back to the drawing board on my ear. When I searched the forum I didn't see anything posted more recently than 2008. My concern is that that the medication which is supposed to help the fluid in the ear move better may have adverse affects on the vein dialation/constriction in the legs. Unfortunately, with the way medicine in the U.S. is so highly specialized, neither my ENT nor my cardiologist can tell me if this drug can affect the POTS. The ENT is the most competant doctor I know, but he doesn't understand the mechanisms involved with POTS, and the electrocardiologist is unfamiliar with medicine used in treating ears. When I looked up the mechanism of the drug itself, all I could find was that the experts aren't really sure how it works, but that it does something to hystimines in the brain. That could be good, bad, or indifferent for POTS. I'd hate to go through all of the high sodium diet, compression hose, exercise, etc. and nothing works, only to find out that this medication also inhibits vascular constriction in the legs.  I was just wondering if anyone with more experience in treating their POTS has used this medication and if they noticed differences with POTS symptoms while on it so I can get a little frame of reference as I work on these conditions with both of my doctors.

[MeAgain...]

Another thought. Does anyone know if there is a way to inquire at one of the dysautonomia centers if a particular medication would be contra-indicated for POTS?

I'm sure my ENT would be willing to send an inquiry if such a resource existed. 

[kimpotster]

On 4/4/2022 at 7:15 PM, MeAgain... said:

Hi, Everyone.

My ENT just prescribed betahistine to help me cope with the copious amounts of salt that my cardiologist wants me to ingest. I was wondering if anyone here with POTS or similar has taken it. 

Thanks.

Meg

Hi there! Did you end up trying the betahistine? One of my more annoying symptoms is an almost constant ear pressure/fullness on my right side.

[MeAgain...]

Yes, I tried it. It was worth trying, but for me it raised my heartrate and I quit taking it. I am still working on what to do next. I would suggest going to a good ENT that deals with dizziness and balance issues. It is entirely possible that your ear problem is caused by a condition other than dysautonomia. My ear problem is a different condition, but it is exacerbated with having to take in a lot of salt. 

[kimpotster]

I went to an ENT first because I was afraid this was affecting my hearing, and was treated as if I had an infection by my PCP (antibiotics did nothing). In a hearing test, I was normal so they ordered a VNG test for my vestibular system. The caloric test showed my 'bad' ear side was normal but my opposing side ('good' ear) is weakened, so they ordered vestibular therapy. I have not done the therapy, as I am not convinced it alone would help, so I am hopeful that treating my POTS would give me more clues or relief. Do you have Meniere's by chance? And was it an issue before dysautonomia?

[MeAgain...]

I have a condition that has similar symptoms to Meniere's, called Superior Canal Dehiscence Syndrome. 

So here's the thing. If the aural fullness is caused by fluid in the inner ear (the balance canals), the remedy to this is actually the opposite of what is needed for POTS. 

To get the fluid moving in the ear, the first plan of action is a low sodium diet. I was limited to 1500mg/day. The improvement was almost immediate. I was doing well on that diet for 5 years until I developed symptoms of POTS following a COVID infection. Now, with a POTS diagnosis, I am ingesting almost 10 times that sodium and my ear is all messed up again. 

Because the remedy for each seems to be the opposite of what is needed for the other, probably your best bet is to decide which condition is causing you the most problems. Get that condition under control first, then find ways of addressing the other. If you decide to treat the POTS first you should expect that your ear condition will not improve and it may even get worse. 

There are options for treating either condition. Once one is under control you will have a better idea of how remedies for the other are working out for you overall. 

I wish you all the best on this journey.