I wish the very best for you and all in the drug trial! For all of us! I wonder how "they" came up with this SPI-1005 as a possible treatment for Meniere's? At times I think all this Betamistine, diuretic, low salt etc. is a stab in the dark.....I cannot ever figure my "triggers."
Haha, agreed on triggers! My Dad had Meniere's and never had a low sodium food to my knowledge. It would come and go and only a few really bad ones. His hearing was bad at the end. Would diet have helped? I eat no processed foods, no salt added.I tried vestibular migraine diet for awhile, but the foods that cause V.M. do not bother me. I'd say bananas with the high sugar content might bug me. Might....I eat super low sodium, and as a result I have low blood pressure. Average lately at 104/95. I have to watch supplements like pycnogenol. It crashes my b.p.. We are all so different with cause and effect. The SPI-1005 is supposed to help regrow inner ear hair. I'm no expert, but I think it will be a success for many. We have to keep the faith and stay positive!
Who knows but thank God that someone is interested enough in our small circle of diseased people to try to help us with a drug —-as for the doctors -talk to 10 different ones they will tell you to try 10 different things because they don’t know anything about this disease.
Same here. I'd been eating a low sodium diet for years before my ENT put me on one. He asks every time I see him. Yep. Still eating a low sodium diet. Yep, still not doing a thing to help. I cut out caffeine and alcohol hoping one of those was the culprit. But no. Nothing I've tried works to figure out what my trigger is. It seems I read. Or I heard somewhere that the drug was supposed to be used to treat chemotherapy patients? I may just be misremembering that, though. In reality, that's really the ONLY way anything would have been done for us. Meniere's has no known cause, is very rare, and, most importantly, won't kill you. So it's not like research companies are beating down the doors to develop a drug to fight this fight. The only way we'll get anything is on the back end of some other drug used for something else.
I did just read today that the latest is "they" think it is caused by viral infection. I lost the article I was reading. I already started L-lysine (from JOH regimen) a week or two ago, and emailed my ENT today about an antiviral. I'm so tired of well-meaning friends trying to get me to buy the latest web snake oil for tinnitus, try the Epley maneuvers, etc. They do not understand the agony of this Meniere's tinnitus, the dizziness and vertigo, the quick loss of hearing and they are certain there is a treatment for it.
Question on the virus front - I've read on this forum about two different viruses that are suspected to be involved in MD onset - Herpes 6 (is this the correct Herpes virus?) & Epstein Barr. Are both of these possible culprits or is one more probable than the other? There has been more discussion about the antiviral meds targeting Herpes as opposed to EB, or are Acyclovir, Famciclovir, & Valacyclovir equally effective against both? I'm planning to get some testing done to see if either of these are currently active in my body as that will be a clue as to whether or not trying an antiviral medication would be worthwhile. In 2017, I began seeing a functional medicine doctor (I've told this story before), & after many blood, stool, urine, breath & saliva tests, among the results were active EB virus in my system. I felt it was inconsequential because I've never had mononucleosis nor did I feel run down at the time. I'd had MD for about 2 years at that point, but neither she nor I drew any connection between EB & MD.
You will have to ask your doctor which antiviral to use for EB. And, I don't know if anyone knows which virus is the culprit. I am using L-Lysine 3X a day in lieu of, from the JOH regimen
Thank you for the info & link @KathyH! I found a post in another topic that implicated Herpes 1/2. H6 must cause something else.
@KathyH - Any help from the L-Lysine yet? I'm taking a truckload of supplements (haven't tried the JOH group yet though I've been aware of them since early in my onset) & am reluctant to add more. I want to get tested for viruses first then decide which way to go. I'd prefer OTC supplements to an Rx though.
@KathyH - I asked about the L-Lysine & whether it's helped before I realized you answered this in another topic. I understand you're still in "wait & see mode."
Sound Pharma completes enrollment in pivotal Phase 3 clinical trial of SPI-1005 for the treatment of Meniere's disease involving hearing loss, tinnitus, and dizziness.
I've been having terrible pulsatile whooshing every night, last night it kept me up for most of the night. I don't know if my doctor or ENT is willing to prescribe antiviral. Don't know how much longer i can tolerate this tinnitus.
@KahtyH - It's my (non-medical) opinion that you should pursue seeing an interventional radiologist or vascular doctor to see if you have internal jugular vein compression. The testing is via a dynamic venogram &/or a dynamic ultrasound meaning the scan is done w/ your head in a variety of positions as opposed to just in neutral. Pulsatile tinnitus is a key symptom IJV compression. It can be corrected surgically. Research has shown for people w/ hearing loss due to IJV compression, hearing is recovered to a significant degree in many cases once the IJV is reopened.
I did just send another message to my neurotologist asking again about my CTA and CTV and possible IJV; in the past she said it is not IJV as the scans showed nothing. This time I attached the article you sent, thank you. My tinnitus has progressed to pulsatile; for 2 years was loud humming, tones, etc. I have read that the tinnitus with Meniere's IS commonly a whooshing, broadband noises.....
I have no symptoms of IJV compression but I felt it was worthwhile leaving no stone unturned so bugged my ENT until he was willing to give me a referral to an interventional radiologist. My jugulars look good when I'm lying down (the position in which all the scans are done), but a friend just told me her IJV compression only shows up when standing. I haven't decided whether to pursue upright testing.