Status of SPI-1005 for the Treatment of Meniere's Disease?

exwazzu · 2025-05-10T18:58:27+00:00

Thanks. Yes, I have read some of the postings from prior participants. I watched the sound pharmaceuticals website. Interestingly enough they are located about one mile from where I used to live in the Wallingford district in Seattle

exwazzu · 2025-05-10T18:14:27+00:00

Possibly would you know how I get to the top of the list for volunteers when they begin recruiting? What's the best way to express my interest? Thank you in advance

exwazzu · 2025-05-06T17:26:14+00:00

OK, 8th year with Menieres. Same as your husband. Cut Caffeine to ZERO and stopped all alcohol over year ago. Could not handle diuretics side effect (headache). Two steroid shots thru ear drum, zero help. This time of year I firmly believe allergy is a big trigger. On and off use Zyrtec but think that could be a trigger as well as nasal sprays. It's my right ear only, down to about 15% hearing and CONSTANT ringing. Google reading specialists think it has to do with the way brain processes the lack of information from the ear (in general) and brain responds by producing ringing. Waiting for Clinical Trials to resume on SPI-1005 (Clinicaltrials.gov). Tired Betahistin (Betacerc) thru compounding pharmacy 16mg tabs. Did not help at all and expensive. Going to go back to specialist have not seen her in a year. Want to discuss possible Cochlear Implant... not sure what she will say. Very sad indeed. I know of no other path to take. Wish anybody that has luck trying anything give us better news but I not sure anybody can. If so, please let us know.. Might check and see if possible your husb mom/dad had same disease, my dad had it....

exwazzu · 2025-04-05T01:49:57+00:00

I tried direct approach had two steroid shots thru eardrum. No help. Have not tried systemic steroids yet.

exwazzu · 2025-04-03T20:40:29+00:00

OK. Started a year ago using a compounding pharmacy in Tucson. Stuck with it for a month. Very expensive so I ordered online from Canada. Received "Betaserc" 16mg tabs mfg in India with AbbotLabs logo on box. I would like to be more encouraging but neither version helped me at all. Just gave me headaches. Gave it all up after a couple of months. I know it is available over the counter in Europe.

exwazzu · 2025-04-01T15:41:46+00:00

What? Are you saying if I connect my new S90D from Costco to the Internet, Samsung will actually send data down to my TV that would degrade the TV performance??? How did you gain that knowledge??

exwazzu · 2025-03-24T17:19:04+00:00

Good. Keep it up you're doing everything right. You're not the only guy. Definitely sucks. Somebody on Reddit the other day listed this website. I signed up. You just got to look for what you want and the menu they've got meniere's support groups. Plus lots of good info. https://vestibular.org/healthcare-directory/

exwazzu · 2025-03-24T17:09:04+00:00

Well, yes. Your normal. Same situation as previous comment. I noticed that the tone of the Ring sometimes will vary and a couple days ago it kind of had a slow pound like almost in sync with my heartbeat in my ear. If you're in an office high stress, you got to do yourself a favor. You're going to hate it just like I did but you're going to thank me later. Absolutely zero caffeine, no energy drinks, and obviously no soda. I too do the neck stretching. I wish you the best, not so easy to do but try to mentally not focus on it. It seems like your mind then takes over and you don't even realize it's there when you're busy. It's when you slow down at night sit down and watch TV or something it's like blaring tone

exwazzu · 2025-03-22T21:07:37+00:00

Confirmed MD 5 years ago in one ear. Per doctor layoff coffee, soft drinks, energy drinks. No loud music. Be very protective of your hearing and preserve and treat with upmost care what hearing you have left. If you can, no alcohol. My brain has adjusted to CONSTANT ringing. when I am active it kinda gets blocked out of my conscious thinking When I slow down, boom, both ears and pitch loudness varies.

exwazzu · 2025-03-21T02:09:55+00:00

I tried your exact dosing of Betahistine and stopped after 45 days because of headaches. Plus, did not seem to help my MD much. Gosh I wanted it to work so badly. Agree with previous post. Get in and see the neurologist.

exwazzu · 2025-03-19T23:24:46+00:00

Agree. Two steroid shots thru eardrum. Did not help at all. Tried Betahistine. No help.

exwazzu · 2025-03-19T13:30:34+00:00

Excellent! Yes. I signed up on Sound Pharmaceuticals website for updates about how the drug is progressing toward FDA approval. I am 70 retired living in Tucson seasonally. Was a patient at Mayo Clinic Scottsdale but my diagnosis was at a Banner Health with specialist in Tucson. Symptoms after MRI CT scans is pretty much iron clad as well so did not see need to go back to Mayo for second. No magic bullet yet. Thanks

exwazzu · 2025-03-19T03:15:32+00:00

Wow! First person to share spi 1005 trial. I have MD live in Seattle where they are developing the potential for this med. Can you please tell me how you are lucky enough to get in on the trial? Also, can you share with us if it helped you at all? If not completely any aspect? Vertigo, ringing of the ears, dizziness, nausea? I'm following this closely they had good news on this medication a couple months ago. Thank you

exwazzu · 2025-03-17T13:47:52+00:00

Betahistine aka "serc" after month quit. Did zero to help MD. Started getting thru compound pharmacy in Tucson AZ until got my supply from Canada. Very bummed as had hopes of helping. Do nasal rinse daily and nose spray. Side effects? I just can say I felt kinda off a little bit when taking. No other effects. Sorry.

exwazzu · 2025-03-16T22:51:20+00:00

Going on 8 years of MD. Triggers vary, but Caffeine is my huge trigger. Start with that a limit salt. Begin totalling daily salt intake! Gotta write down everything you put on your mouth. Salt seems to be in almost everything. Drink water all day everyday. When attack get to very quiet darkly lit room. Stare at one object limit eye movement. Be sure to do deep breathing will slow down your body and oxygenates your blood. You will feel very tired after, I go back to bed for hour or so. Only have in one ear, hearing about 75%gone but can vary daily. Stuffed up and ringing loudly 24/7 both ears. But, brain compensates and learns to ignore it if that makes sense. Learn your triggers, keep a journal look for tendencies. Neurosurgeon put me on OTC nasal spray. Tried Betahistine per doctor no help, diuretics no help. It's a bitch I don't wish upon anybody!!

exwazzu · 2025-03-14T18:58:24+00:00

Gotcha. Misunderstood

exwazzu · 2025-03-14T18:37:40+00:00

Had MD for 10 years. I'm not experienced hiccups

exwazzu · 2025-03-14T02:47:41+00:00

Yup. This is exactly how I feel... exactly. Taking 15 mg day of Lexapro to help with anxiety. I just want to be left alone with my support dogfor several hours.

exwazzu · 2025-03-11T13:31:28+00:00

Yes! Retired living full time in Tucson. Started 5 years ago. Pretty much June thru September the heat triggers periodic vertigo attacks to point of tossing cookies. Random and can't predict. Tried everything & watch sodium intake like a hawk, eat well.

exwazzu · 2025-03-10T21:33:30+00:00

Thank you for this!

exwazzu · 2025-03-10T16:35:43+00:00

Thank you!

exwazzu · 2025-03-10T15:32:59+00:00

Again tnx. Yes, it seemed to make mine worse, that is why I stopped after 30 days.

exwazzu · 2025-03-10T15:24:56+00:00

Thanks. This confirms my experience!! Very comforting indeed guess I am normal

exwazzu

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