Sorry to hear it’s not working for you. Unfortunately, it didn’t really work for me either. In fact, I also felt my symptoms got worse while I was on it. Had a vertigo attack on day 9 while I was on it, and my pressure and tinnitus were raging. Now, this was all going on while I was in the midst of an acute flare up that I get every April that I attribute to allergies. Just the same, the drug really didn’t do anything to calm that flare up at all. My symptoms just continued to get worse until I got some prednisone. I also got really bad side effects from the drug and decided to drop out of the trial altogether. It wasn’t an easy decision. But between the side effects and the fact that I think it just wasn’t helping, that’s the decision I came to. Good luck to everyone on it, I really do hope it works for some.
Sorry to hear that -- have you had allergy testing or treatment done then if you suspect your inner-ear inflammation to be allergy mediated? Could you explain what side effects SPI-1005 caused for you?
I’ve had testing and am currently on immunotherapy shots for allergies. as for the side effects , it made me feel terribly flat and depressed while I was on it. I had some dry mouth and fatigue too, but that was more minor. The depression and flat feeling I had were enough for me to stop it.
Sorry to hear that, nothing can make me more depressed than my tinnitus, but I bottomed out on that some time ago. I recently started on Zoloft which seems to help a little. My primary care doc wants me to see a psychiatrist but so far I have not done it. Stubborn.
Got it! That's great that your tests came up positive, as the immunotherapy route could be your answer. How long have you been on this, and any relief yet? That is unfortunate, noteworthy too that these side effects sound more psychological. Let's have our other users keep tabs on this and see if they notice similar side effects.
Sorry to hear that Yellowman, I know you’ve termed it as the “suicidal tinnitus” in he past so to have it get worse must be disheartening. It’s still early though, things could change.
Re. immunotherapy for allergies, there are daily self-administered drops you can take, made up of the allergens you have tested positive for. It's easier than going in for shots. A relative of mine said after 6 months on the drops her allergies significantly decreased.
I was on the drug for 12 days. On day 10 had vertigo and had to leave work. Stuck it out for 2 more days, but decided it wasn’t worth the side effects and didn’t see any improvements. My symptoms seemed to be getting worse while I was on it, or at the very least, remaining the same. Stopped the drug for two weeks, per recommendation and in agreement with the study director. Re-started the drug for 3 more days, but felt those same side effects and decided to call it quits despite by best efforts.
Thank you all for sharing your experiences. Sad that they are negative, I had a lot of hope in this drug, at least to make sure I never have vertigo again (with Daniel I see that even this is not safe). Because without vertigo I would not have brain fog, fatigue, hyperacusis, Meniere's hangover, etc. If also the hearing or the tinnitus improved, it would already be perfect. Can you say how many years you have been with Meniere? Perhaps the effectiveness of the medication is less the later it is taken... although for dizziness this should not influence.
Thanks for sharing, that’s sounds like a very reasonable decision given the circumstances and your symptoms. It’s a shame that it didn’t feel good or work for you, but we all know everyone is different.
That's a tough situation, @Daniel. I'm sorry you had such a bad side effect. That can be true w/ any medication, right?! We never know whether something new will help or be detrimental until we try it. For your sake, I wish you'd had great symptoms improvement.
I have mentally asked the same question about Ebselen - Will it be more successfully used by those who've had MD for a shorter time? My onset was in 2015 after a head injury so it's been 8 years for me. The hearing in my left ear is basically gone. I was initially told it might take 10 yrs for this to happen. Honestly, I didn't do anything heroic to try to slow the process & may have done some things that hastened it (long distance running/hiking & getting overly fatigued...over the years since diagnosis seemed to stir up vertigo & tinnitus but I loved what I was doing so didn't stop). Bad judgment on my part. Also, I had a thought on what I'd said previously about reading that Ebselen helped the sensory hairs regrow in the inner ear. Perhaps that is a positive consequence of the anti-inflammatory properties of the drug. Once inflammation is gone those dying sensory hairs get a new chance at life thus this drug indirectly allows for that.
Sorry you had so much chaos. We are all diagnosed with the same or similar symptoms, but we are all so different. Blessings to you my friend. Stay strong!