Posting a call for help: does anyone know of a good way to simultaneously treat both POTS and Ménière’s disease? Please contact me if you’re either a clinician with experience doing this or a patient who has found a good solution. Context in thread
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Hi Ian, thanks for sharing the story of your illnesses, the combination of which sounds extremely tough! I am keeping my fingers crossed that you manage to find a better set of treatments.
I’d talk to an autonomic neurologist who specializes in POTS. Ask @dysautonomia.bsky.social for a specialist near you like (@dysclinic) Dr Blitshteyn on Twitter
Nicotine patches largely cleared up my long covid POTS when I first used them, and it's a vaso constrictor. 4 reinfections later I'm having trouble again, but with a kid it's really hard to avoid.
I have hearing loss and have had vertigo. I don’t have POTS but something like that from side effects of a heart rhythm and blood pressure medications. The following helped my vertigo: 5mg Valium then lie down and keep head still for several hours
I know someone who dealt with that combo for a while, and it went away when they started taking vivance for ADHD reasons, which happens to be a vasoconstrictor. Their suggested stopgap was coffee or whatever means you can constrict your vessels w/out salt consumption.
You may want to research hyperadrenergic POTS specifically for treatment options (presents w/high BP, can’t take salt). Seconding compression garments. Also, follow @drrebeccaryan.bsky.social
So sorry to hear about this @ian-goodfellow.bsky.social . Do you think any of this might be related to prolonged headphone usage in addition to many other factors? Or if that exacerbates the condition?
No, I’ve never been a heavy headphone user and always been careful about my noise exposure (before getting ear disease). You can see in my profile pic I even wear “cat ears” when biking
Again, very sorry to hear about what you are going through. Advertising here is a great idea. I personally got some good advice about a condition I was going through. Wish I could be more helpful though. Wishing you the best!
My early 2023 hearing loss was diagnosed as endolymphatic hydrops / the cochlear only version of Ménière’s disease. It causes progressive hearing loss, feelings of pressure in the ear, and tinnitus. There is no cure, but it’s been stable with low salt diet, a diuretic, and an anti-migraine drug.
This year I unfortunately got POTS from COVID. POTS is a failure of the body to regulate blood flow correctly, the heart has to beat extra fast to get blood to reach the head when upright. It’s much more complicated than that but that’s the defining symptom.
The huge problem for me is that POTS and Meniere’s have basically opposite management requirements. Diuretics are very bad for POTS so I can’t take a high enough dose to keep my Meniere’s stable
I’m so sorry, this sounds difficult! Can you do sodium chloride or ringers lactate home infusion? Many of us with POTS need both oral and intravenous hydration, but some must avoid too much oral sodium hydration like yourself and improve hypovolemia from POTS with intravenous hydration only
With unstable Meniere’s, my ears pressurize and lose hearing if I lower my head, so I have to sleep propped up quite high, but this is horrible for POTS, since my body struggles to get blood into my head. Obviously this is bad for my sleep generally and causing a wider downward spiral.
Many POTS patients benefit from eating several thousand milligrams of sodium per day but for Meniere’s I need to keep my sodium under 1500 mg per day. I get noticeable damage if I screw up even one meal.
IVIG is only an option and worth the downsides of it if your disease is severe and treatment resistant (and autoimmune/immune mediated). Very hard to access for POTS alone, would likely need to be either extreme or more of a pan Dysautonomia. Not sure how it is for Meniere’s, but…
The small fibre neuropathy from my autoimmune disease was not only causing severe dysautonomia and sensory neuropathy, but also serious vestibular damage - tinnitus, hyperacuity, vertigo, and episodes of partial hearing loss. All resolved on IVIG (and are sadly relapsing off it).
I'm sorry you're dealing with this challenging combo. (I am only dealing with Ménière's disease and that can be pretty rough some days.) I'm going to share your post in a moment in the hope that someone else will be able to offer some practical solutions and/or suggest some useful resources.
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I’ve had POTS for decades and always had accompanying low BP.
Since getting COVID twice in 2023, I now have significant hypertension but still have POTS.
Hard to know what to do.
IVIG could be worth looking into, and depending on where you live, you might be able to get into a trial. https://Clinicaltrials.gov
But for an easier option, I just happened on this small study that found compression garments did make a difference in orthostatic intolerance.