My ENT totally and very quickly shot down the antivirals suggestion and said he did not in any way think this is caused by a virus. Ok, so what's our next step? Two attacks in two weeks is not acceptable. He put me on a course of prednisone, said stay on the diazide water pill, low salt, etc., and gave me a prescription for valium 5mg if needed to head off another attack. Hopefully I won't need it but if I do I hope to God it works. He said my next step is steroid injections in the ear. EEK! I'm starting on JOH's protocol as soon as my first order from Vitacost comes in. Keeping my fingers crossed that this helps.
I'm so sorry to hear that. I think the JOH will really help, but it is slower, as far as I understand (I started the anti-virals before the JOH--the JOH seemed to make what was going well go even better). The really aggravating thing is that he is prescribing things that are more likely to have negative side effects than anti-virals. My doctor's attitude was: the anti-virals are very low risk, so might as well try it. Now she's got a whole department on board. Did you show him Dr. Gacek's article? If not, that seems like one thing you could do. Do you want to tell us what geographical area you are in, in case someone knows a doctor who will prescribe anti-virals to MM patients? It is good that at least you have things to try. Here is one more, low side-effect: having a cup of chamomile tea to reduce anxiety. Sounds like a stressful time. My heart goes out to you.
Moody mom my doctor has taken the exact same course. He was aware of Dr. Gasek' s study, but said he did not have the same results. He put me on Prednisone also. The dose was the same he said that would be for poison ivy. When I ended the script, I was really dizzy. I called and he put me back on Predisone. I do feel good most of the time, but far from.perfect. I will ending the script tomorrow. Then what? I guess one day at a time. If Predisone is helping, what does that tell him? I can't stay on it forever. I am going to try the Mauralan (sorry I know that's not right) the supplement. My vertigo has been intermittent, but the dizziness more between attacks. I have the Menieres big three hearing loss, tinnitus and vertigo, but I also get neck and head pain with it and dizzy laying down. Good luck and thanks for sharing your story.
My ENT wouldn't prescribe antivirals either and acted pretty arrogant about it. I got my PCP to write the script and plan never to see that ENT again. Keep looking for a different Dr and in the meantime try the JOH and some of the other treatments mentioned on this site.
Yes, I did give him the article but he still said no. I asked him to please read the article and reconsider it if the current approach he prescribed today does not help. He's a very nice doctor and didn't say no to it like he was offended but just that he personally does not agree. He said that he believes that 90% of those he sees with of Meniere's have it under control with his protocol. We shall see. I go back in two weeks. Another hearing test in a week. Oh, and he told me that he did not think the unsteadiness and balancing issue I seem to have ongoing is part of the Meniere's. He thinks it's anxiety but everything I've read says that it is common to have balancing and coordination problems. As well as the cognitive issues. ???? This diagnosis is new to me and am still learning about it. Thank goodness for google. I'm in southwest Georgia, about 60 miles south of Atlanta. My ENT seems to be the "go to" in the area I live. I love chamomile tea. I actually drink it regularly. I'm a amateur herbalist, taking an online class that I'm almost done with. Skullcap is an herbal antibiotic and antiviral. I'm starting to take that with chamomile as well. Thanks for the ideas. A year ago I went on a major lifestyle food change diet. I have lost 125 pounds in the last year. I wanted to stop weight loss and maintain about 10 pounds ago. I've lost ten pounds in the past month not trying. I'm beginning to look too thin and a bit on the sickly side. Never thought I say I need to stop losing weight in my lifetime.
Of course he did because he's either: a) stupid and unwilling to read a paper, or b) realizes there's no money in it for him. Find another doctor.
Yes, indeed, thank goodness for Google, and for this community. Since he's a reasonable, nice person, maybe you could ask him if he'd be willing to just give the anti-virals a try since they are so low risk. The anti-virals definitely have less side effects than prednisone. He will, hopefully, have read the article by the time you ask him that, as well, and maybe that will help. As far as I understand (and I could be wrong about this) prednisone and steroid shots only offer temporary solutions, so you'd have to repeat them. Someone started a thread here somewhere where people (including me) told their success stories with anti-virals to also give to doctors. It might be in the database section. I most definitely have unsteadiness, balancing, and cognitive issues when my MM is acting up.
What is wrong with the doctors????? THEY should be open minded and it seems it is the opposite. Tomorrow , I am seeing my ENT ( have been waiting for the appointment since 2nd December!!!) DR Gacek's "perspective on recurrent vertigo" printed out, all ready to go! I don't expect to much, but who knows!? Worth trying though.
MoodyMom - believe that Dr Gacek's son follows the same approach and is in FL or one of the Carolinas. Perhaps that is an option. Also look through the archives and see if there are other drs mentioned in the GA area that might be more help. Last - try your GP or any other dr. It does not have to be an ENT that prescribes the a/v. I did the low salt and no caffeine with water pill for the first year of this thing because that is what the leading "experts" thought. The result - numerous attacks, hearing loss and lack of quality of life. Reality is that you should find ANY dr to try the anti-virals. The sooner started the more likely to work and not have permanent hearing loss like me.
Marta - basically if the dr shoots you down, do your best to convince him to at least try it. Especially because there is no significant side effects. Get him to agree that it isn't a health risk, so try to get his agreement even if he thinks it won't work. Key is at least 6 months. And it has to be at full dose protocol. Good luck.
When I mentioned anti-virals to my doctor, she said that she doesn't prescribe them because there wasn't enough evidence to prove they work. She also mentioned that a study was done where they didn't work. Does anyone know anything about this? As far as my doctor being stupid or in it only for the money, she said she had no problem if I wanted to see another doctor that would prescribe them.
zotjen, if there is a study like that then most likely they were not using the recommended dose of antivirals for Meniere's.
But even though she doesn't think there is enough evidence to prove they work - the question is why she wouldn't be willing to try? There is very low risk so worse case scenario it doesn't work for you - but you tried. I believe that is the frustrating part is short of surgery, there is nothing "proven" to work for everyone so with no significant negative side effects it makes no sense not to at least let you try it.
I asked asked my family doctor and he read the paper and gave me a script a while back. So try your family doctor as someone else suggested here too.
Hi Moodymom Why don't you print out threads were fellow sufferers confirm that av's have worked for them and threads where people are saying what is there to lose by trying av's and stick it under his nose or somewhere else. To me the comment he made that he thinks you are suffering because of anxiety is just plain insulting. Doctors and ENT's make me so angry. Give me his number his number and I'll give him a call and put him straight. Only joking but seriously they need bringing down a peg or two and telling that its possible that they are wrong. All the people who are seeing good results with av's can't be wrong or liars. Best of luck and wishing you well. BY the way did you see the great results that LULU has had with Menolaurin
Moodymom, I am sorry to hear your ENT refused. It angers me too jaypr, especially how we know it helps so many including myself. Have you tried your PCP/GP? They are usually more open to it. Dr Mark Gacek, Dr Richard Gacek's son is in Mobile Alabama.
I'm going to look up other ENT's and see if there is another one near me if I can't get him or my gp to prescribe the antiviral med. I was a bit surprised when he said my balance problem between attacks was probably my anxiety. That made no sense to me. I have anxiety before all this started to begin with. I've done some reading and found that steroid treatment may help but is only temporary relief. I'm wanting lasting relief, not a band aid. I will admit that I do have a bit of a problem speaking up for myself when it comes to doctors. They intimidate me and make me feel about 2 inches big for some reason. I'll try to be a bit more forceful on my next visit. Ugh. In the mean time I'll be starting on the L-lysine along with the rest of JOH's protocol. I do believe I saw something somewhere on here about the monolaurin. I'll go look for it again. Mobile is about 400 miles from me but it sure would be nice if it were a bit closer.
Moodymom27, I think a lot of us have had problems speaking up when it comes to Dr's but remember no one understands better than you how miserable this disease can make you feel. I've found my PCP has always been more open to trying things than any ENT for some reason. Find the Dr who knows you best and have a sincere conversation with them. Also maybe the 400 mile trip to see Dr Gacek would be a good idea. You only have to see him once to get the script then go back to your regular Dr's for everything else.
Moodymom - I have been frustrated like you are with drs. It drives me crazy that the same ones that don't have anything to offer are the ones to say what wont work. Especially because since no doctor agrees what causes Meniere's or why one treatment works for one person but not for another - since no medical doctor has been able to come up with those answers it is not acceptable that they completely discount a potential option. Especialy one with less side effects than what they are offering as a "solution". Try your GP or do a drive to AL. Either seems to be a better option than staying with a dr who seems to not be open to ideas. And as a Meniere's sufferer - I scoff at your dr assertion that all of his patients have success with his protocol. Can't believe that. Even the steroid shots in the ear work for a period of time for some, and not long for others. And until your dr has suffered even ONE attack like you - he/she needs to be more open and understanding. Also, send a PM to Bulldogs. Believe he may be in your area and may have an idea (no promises could be wrong) of a more open minded dr near you.
Thank you everybody for the information. I'll keep you updated on how it goes. I'm praying for some relief with the oral steroids because it makes me cringe to even think about getting a shot in the ear.