Last November 2015 my husband suddenly had the worst case of vertigo to the point where he was totally normal, then suddenly he couldn't stand, couldn't walk, vomiting uncontrollably. We took him to the hospital and they did some tests, couldn't find anything wrong with him, said it was probably BPPV, and we went home. Well the attacks continued (less severe though) for about 2 weeks after the initial attack and we took him to the ER again and they tested his blood and found no problems with him. Said it was maybe caused by a virus...then sent us home. The attacks stopped shortly after. I began my own research and found out about Vestibular Neuritis and this made sense to me because it says it is caused by the Herpes virus attacking the inner ear and he does get cold sore since childhood. We thought maybe this was over but then in the 2nd week of March he had another debilitating attack. This one was different than the one back in November in that high freq tinnitus was ringing in his ear. It happens right before the attack or at the beginning of the day when he wakes up to what will be a bad day. He went to an ENT that day and They checked his hearing and found a low-frequency sensorineural hearing loss in the right ear. They prescribed prednesone and gave him steroids through an intratympanic membrane shot which may (or may not) help recover some of the low-freq hearing loss. Now, with this new addition of the hearing loss and the tinnitus, we believe his condition to be Meniere's. I am not done with my belief that this condition stems from the Herpes Virus and I told the ENT I want him on ACYCLOVIR and he said he had never heard of that working, but even a quick Google search will help you find articles and studies like the one from Dr.Gacek which found this to be quite helpful. We have started him on it 3 days ago, he has had one small attack that did not progress to get worse. Today we go back to the ENT and I want more ACYCLOVIR and also his 3rd shot through his ear drum. My husband thinks the ear drum shots make the tinnitus louder and cause an attack in itself. So maybe with the addition of the Acyclovir, that won't happen this time. He is a teacher and a musician and this disease is more debilitating than I can even imagine. He also takes Meclizine and has attacks while on it so I'm thinking of switching to a betahistamine like Betavert. Thanks for reading and listening. I will keep you updated.
Hi Titanium I'm very sorry to hear your husband has been suffering so terribly. I sincerely hope the antiviral will bring him some much needed relief. If his condition doesn't improve you may want to see about making an appointment with a Neurotologist in your area. They specialize in conditions of the inner ear more so than an ENT does. An OTO would do a very thorough examination to eliminate all other possible causes and determine if your husband does indeed have Meniere's. If he also has BPPV, that can be treated by an OTO as well. All my best to you and your husband. Lulu
Thank you for this suggestion. Do we know what about Valc that makes it more effective? He is now on Valacyclovir and then when that runs out we have Valtrex brand name pills (also another suggestion from someone). He began taking the Valtrex 5 days ago after 2 weeks of recurrent attacks (Almost everyday) and the past two days he has been symptom-free and the tinnitus is quieter. Also, he had his hearing tested again on Monday and the low-frequency loss has improved from 50dB to 40dB. I am also picking up a Betahistine from a Compound pharmacy today. I didn't know what a Compound Pharmacy is but I found one near us. Very interesting. The Betahistine is not covered by our insurance but we will see how it works for this month and if it does, we will continue with that too. Lulu, thanks for your response and helpful suggestion. We have an apt tomorrow with an Otolaryngologist at an office in Central NJ .
Great update titanium! Valtrex supposedly crosses the blood brain barrier faster than acyclovir. at least that's my understanding. Keep in mind though many people have set backs when first starting antivirals, so if that happens don't be alarmed or discouraged, and have him continue taking it. Also studies show SERC is effected with MM on high doses. There is a study on the forums showing that I think the dose for MM is 288-400 something I cant be sure, but if you do a search you should find it. But since he is doing well on Valtrex maybe you should see how it goes for a few months before adding something else? I am assuming he is taking 3000mg of Valtrex which is the proper starting dose to treat MM and don't let him decrease until he is vertigo free for at least 2 weeks. If when decreasing symptoms reoccur have him go back up to 3000 mg and try again at a later time. It took me 8-9 months to be able to get my maintenance dose w/o any symptoms returning.
Vicki thank you very much for your response!! I was just confused by one thing you wrote about SERC. I believe the dose that the Doctor wrote for Benehistine was like 8mg tablets. Does that sound about right?
I am on the generic valtrex. I have had issues when the pharmacy switched and filled with Mylan as the manufacturer - so keep that in mind if "suddenly" the med is not working. Double check if they changed manufacturers.
When I look thru old threads, it seems like the people who were taking serc were taking anywhere from 96-224mg daily....
Hmmm he is actually on Valacyclovir generic Mylan right now. When this runs out we have actual brand Valtrex. Good to know and very interesting that some people have bad experiences with Mylan.
Went to a different ENT today just for another opinion about what we're currently doing. He said we are doing all that we should and can be doing at the moment. It was good that we put my husband on the prednisone and tympanic membrane steroid injections for the hearing loss right away. He didn't say much that we didn't already know or hear before. He was also skeptical about using Anti Virals. Said it couldn't hurt but didn't think it would help much. I was prepared for the doctor to say this. Suggested an MRI in a few weeks and an ECOG which he said would confirm Meniere's (if it is definitely that). Doctor said this is most likely caused by a virus and I suggested the HSV(hence why he is on Valtrex). No definite answers yet. My husband started Betahistine yesterday and it's day 6 of Valtrex and the 4th day symptom free. Taking this one day at a time. My husband is 31 years old and otherwise feeling healthy.
Doctor can be skeptical but so many have found relief with anti-virals....and the fact he agreed "it wouldn't hurt" just push to ensure that your husband can stay on the a/v at the proper protocol. For me I had to stay on the full 3x1000 dose for 2 months before tapering. I had improvement but didn't think I was quite "there" at 1 month so dr agreed to extend. After that I tapered per the protocol and outside of an off day here or there where I take an extra one...knock wood. No vertigo, minimal ear pressure, minimal ringing, fatigue gone. Also, keep in mind that all MRI, ECOG, vestibular testing can only rule out other items. There is no exact testing that truly confirms/shows Meniere's - more of process of elimination. Good luck to you and your husband!
Before I started antivirals I used to be on Betahistine, 48mg per day. It did not stop my vertigo episodes. I have been on acyclovir and John of Ohio's regimen for a year now and have had no symptoms except for tinnitus which could be unrelated to the disease. People reported cessation of symptoms with Betahistine dosage as high as 240mg per day.
Yeah my husband is on 8mg tablets as needed. To stop or prevent the vertigo attacks but when I read the studies that say 48mg of Betahistine was used to reduce tinnitus I think that our little 8mg tabs do nothing!