I had my appointment with Dr. Gacek yesterday and it went very well. Even though I am not attack free yet, he definitely thinks anti-viral (Valtrex) is working for me. I really have improved so much. I asked him about the diuretic I am on, and his recommendation was not to continue it. He said that he would be concerned about the effects it can have on my body, and that over his years of practice that he has not seen that diuretics have really helped his Menieres patients. I was very reluctant to go on the diuretic in the beginning because of my concern about side effects. So as soon as we get back home from this trip, I will try to go off the diuretic. I was curious how many of you really think diuretics have helped you with Menieres? For those of you who were on it and then went off, did you notice any changes in your attacks? He also said that everyone, not just Menieres patients, should watch salt intake and not add salt to anything. But other than that, he didn't think I needed to go crazy with low sodium. That is the same thing my local ENT said. I am confused about that because so many out here seem to have sodium trigger attacks. I'll have to just experiment with that I guess. I do worry about getting too little sodium the way I am eating currently. He also stressed the importance of keeping stress low and doing whatever it takes to keep my immune system strong to help fight the virus. I'm doing John of Ohio regimen so hopefully that will really help from that standpoint. I also take Vit. D drops. Anything else anyone does to support immune system? Thanks!
My doctor had the same advise about salt intake--not to go overboard with it. Also, I was advised when I was in the hospital not to take the diuretic--but due to my feet swelling so much my primary said to only take it when they swell--not to take it daily because I feel it adds to my Meniere's symptoms of feeling 'off kilter' and dizzy. I know it also helps with blood pressure control--that was why I was put on it originally. But now I take two b/p medications so don't feel I have to take the diuretic, except to take down feel/leg swelling. I take up to 3 a week usually--25 mg. capsule. I tried the Valtrex but since I don't have vertigo, just head pressure and dizziness--it didn't help. So, Dr. Gacek told me--by email (since I haven never seen him), to stop the Valtrex. Now I have started balance therapy (see my posts here). Hope you get some much needed relief and I do believe you are in good hands with Dr. Gacek from the report of others here on this forum.
Avoid caffeine. Salt makes no difference to me (although i do not eat a lot of it) but caffeine definitely makes a difference. Darn.
Am I undesstanding you correctly that Dr Gacek said not to use antivirals because there is no vertigo? Or is there more to it? No vertigo and it's not giving improvements? Thanks.
I tried two diuretics one made me nauseous and the other one still didn't help. I'm also on a very low sodium diet. Salt is a trigger for me unfortunately. I can't eat anything at a restaurants .
Well, after taking the anti-virals for 3 weeks, I wrote him, told him It wasn't helping the head pressure nor the dizziness (that I didn't have vertigo, hadn't since the shunt surgery). He answered and said it probably wasn't going to help me (the anti-virals) since I didn't have vertigo, so I took that to mean that is the reason or the main reason folks take it and since I don't have vertigo anymore, it wasn't doing anything for the other symptoms. I may have misunderstood but I've written him since then about various symptoms and have not gotten anymore responses. He's a busy man for sure. So, guess he limits his replies to those who are in the midst of vertigo.
I want to speak up as an example of someone who has been in touch with Dr. Gacek by email and has little to no vertigo from MM. I do get vertigo from MAV and BPPV. My MM symptoms are tinnitus, fullness, hearing loss, dizziness, and low energy. He has been encouraging of my taking valacyclovir and it has resulted in improvements in all those symptoms.
Thank you bythebay. Do you differentiate the potential cause of your vertigo by other symptoms that happen at the same time, that are not MM related?
It has always been my understanding that from a medical/doctor standpoint the a/v goal is to reduce/eliminate vertigo. Any impact on the other symptoms is just a "bonus".
That was the impression I got to nicmger. I do have vestibular migraine--but no vertigo from that either. And by head pressure and dizziness (Res), I mean just that--from the eyes up My head feels a sense of intense pressure and it makes me feel dizzy (not vertigo) but off balance to some degree and when it's bad, nausea is present too. I have tinnitus but nothing like I did when I hd vertigo. I agree that this condition is so individual in it's symptoms, and also the patient's results from taking meds like anti-virals that all one can do is share what has happened and let the person decide if they want to try 'whatever'' is recommended and then and only then will you know if it works for you. It's wonderful when it works and very disappointing when it doesn't--but you don't know until you try.