kimpotster

On 6/15/2018 at 7:35 PM, Pistol said:

@Bluebonnet08 thank you soo much for sharing this!! I used to get NSS infusions but when there was a shortage of NSS due to the hurricane in PR they gave me LR. I really did so much better on it, so now they give me LR when I get bad. I do not tolerate fluids given fast, so they give me 4L LR over 24 hours and it totally turns me around, it is like a button gets turned off. I hope you continue to feel better and I wish you well!! 

Hi again Pistol! I just recently started a trial of NS infusions twice a week (1L run for about 2 hours). I noticed the effect was quite temporary (during the infusion my HR normalized, almost reaching 60s, and my BP, which runs low and normally has a pretty narrow pulse pressure, looked almost normal!). Did you say that was true for you in your experience? Did you only switch to LR due to your experience in ER admissions? Additionally, how did you know to try running at a slower speed? I haven't experimented with that quite yet. I also realize I am fresh to this trial so I may be speaking prematurely!

On 10/13/2011 at 10:37 PM, yogini said:

I have noises (crunching/swooshing), pressure and fullness in my ear. I have had many sleepless nights because of this. I went through extensive tests and multiple ear doctors and vestibular rehab. After all of that, we concluded my "ear issues" are related to POTS. The inner ear plays a part in blood pressure. Usually, when you have an inner ear problem, the room spins round and round and can be triggered by just moving my head. My dizziness is more of an off-balance/floating feeling, not spinning and is more triggered by positiional changes (and not affected by moving my head).

There are definitely some people that have POTS and inner ear conditions, but I also think there is a lot of room for misdiagnosis, because doctors don't know enough about either of them. There are some overlapping symptoms between POTS and ear problems and. like POTS, some ot the ear conditions are not clearly understood or tested for.

Hi! I know this is an old post but hoping you can give any update on your ear situation! I first came to these forums because of this issue, and finally decided to join after my official diagnosis. I have never had major ear issues in the past but 3-4 months into dysautonomia, my right side ear constantly feels clogged and pops frequently when I swallow (sometimes goes away when eating). I fully believe this is related to blood flow/pressure to the ear nerves, as the sensation of fullness/pressure indicates such. I have the same issue: I don't have vertigo but instead it feels like I am a bit drunk in my balance. My ENT did a VNG test that showed my balance is off on the 'good' side, which I assume is trying to compensate for the 'bad' side.

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?

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.

On 7/2/2022 at 6:10 AM, Pistol said:

@Nin - Midodrine is mostly used for POTS types that suffer from dilated blood vessels. I have problems with the vessels constricting and cutting off blood flow, causing seizures like yours. I was put on Midodrine early on in my illness and it did not help me, actually it made me feel worse. When I began to see my autonomic specialist he told me it was the wrong med for my type of POTS. I was started - in addition to many other POTS meds - on a calcium channel blocker, which dilates vessels, and that has greatly improved my HR, BP and circulation. 

I've only been diagnosed for about 1-2 months, so I am new to a lot of this, but would you say that if I similarly felt worse (terrible headaches) with midodrine, would it be safe to assume that compression wear wouldn't be beneficial for my phenotype of POTS? We are guessing it is possibly hyperadrenergic but I have lower BP than some others have, without fainting.

On 7/26/2022 at 10:53 PM, DysautonmiaMatt said:

From my understanding for digestion the body uses parasympathetic nervous system. Maybe if one is stuck in sympathetic overdrive digestion will be affected. This has happened to me. A benzo calms the CNS. When I flare up I don't have well formed stools and can sometimes see undigested food. When not in flare they are formed and all is good. I hope that was not TMI. 

I appreciate you sharing this and don't think it is TMI, especially considering the wide range of issues we have! Also makes me feel more normal, if that's possible  Are your stools ever lighter in color when you are flaring?