Well, I called to get an appt. for myself and hubby--he has some problems developing, but nothing like Meniere's. I told the secretary what a bad time I've been having the last couple of months and if the doctor has anything more to suggest or if he wanted to see me sooner, I would appreciate it. His nurse called back and said 'to continue what I'm doing' and he was sorry but there was nothing more he had to offer for my symptoms--of 'head pressure', nausea, return of tinnitus and dizziness. I told her my Valium was very old--as I'd stopped taking it last year, so am getting a refill on that to try again--but feel 'so defeated' right now. He's really a caring doctor--but I don't think he even fully understands how badly this has gotten. No vertigo and so the 'shunt' surgery must be working--3 years post op now. But--to tell someone that is sooo dizzy/with nausea and feeling like my head is about to burst (not pain--but pressure), is like telling someone with pain anywhere in their body that 'there is nothing to help'. Anyway, just sounding off. I keep thinking if one of the doctors who hear this type of story--and have this disease, they would understand and 'find something' to help us more than is being done.!
Yes, another doctor, preferably one who specializes in Meniere's. Perhaps someone on the forum could recommend someone near you. You don't have to live like this. There is always another option. Look at all the people on this forum who have gotten better. Don't give up, get mad! Cheryl
I agree with you. If these doctors ever had to live through even one of the attacks we do, or in your case day in/day out of constant balance, nausea, etc....I would like to believe they would not so quick to brush us off. I "get" that for doctors this thing is hard because there is not a one fix for all. Last year I had a 4-6 week stretch where I had full vertigo attacks 2-3x per week (mine always come in clusters) and had called the doctor and she called me back and said basically the same thing. I found a different doctor that agreed to try the anti virals and so far, so good. I am actually debating going back to my other doctor to share the results...course it is most likely a wasted trip. Sad thing is you might be better off having the vertigo return and then proceed with a laby surgery. I am sorry that I don't have anything uplifting to contribute or another process of something to try. I have read all of your posts so I know you have tried everything. Acupuncture for the nausea and pressure?
Thanks to all for your encouragement and I do agree that in 'most cases' I'd be going to see another doctor! And, I thought the same thing--right off the bat! But--I thought of how often I've told my doctor these same symptoms and yet he doesn't understand--or he does but says 'again', nothing can relieve all my symptoms. He's been kind, listens to me, and did the surgery that took away the 'vertigo' and I have seen another doctor--about 3 years ago and 2 Neuro doctors--who think part of my problem is 'silent migraine' and i've tried migraine meds--cannot tolerate them. So, when I decided to 'give my Ent another call' and see if anything else could be done, and he said--'no' to continue as I have been--not sure what that means-unless he meant, taking the Xanax and doing the best I can in dealing with this. I see him in July, so do have some specific updated info I want to ask him about. In the meantime, getting an up to date refill on Valium--hoping that will help on bad days. Will keep you posted. If I'm not better--I will be seeing either another Ent or Neuro in the future. Or just do the 'best I can' and pray the symptoms ease.
It took me a long time to find some relief on the silent migraine/MAV thing. I trialed two meds, one actually made the dizziness so bad I had to have someone to hold onto to walk around. Propranolol, while not a first choice for MAV, was tolerable for me. It took forever because I had to start at small doses and work up. I was only able to get to 40mg- was a zombie on 80. Anyway I think it is beginning to stop working for me, which can happen. Supposedly the best two drugs for MAV are verapamil or effexor. I think verapamil is up next for me. I also used to take Xanax which is fast acting , but wears off quickly. It stopped working for me for that reason. I now take a low dose of klonopin daily. It is longer acting, but I don't feel that instant relief like Xanax. When my dizziness is more constant, the klonopin takes it down quite a bit. I don't think I would've survived last fall without it. Also, David Buchholz book Heal your Headache was helpful, as is the diet he recommends. It is very stringent, and I followed it for awhile, preparing all foods myself. Adding low sodium on makes it even harder. I got more liberal with my diet because I felt the propranolol had raised my thresholds. But now having issues again....
dizzy--sounds like you are like me, trying just about everything and sometimes even more than once. I've tried a couple of anti-depressants more than once, worked for a short time but then the side effects were worse than the 'help' they gave me. Then the Xanax helps but I am 'so sensitive' to any drug that affects the nervous system, that even though it helps, I have to take only 1/2 a low dose at a time and no more than 2 a day. I have taken 3--rarely--but most days, it's 2 (1/2 tablet at a time). That seems to ease the anxiety somewhat that I get with this pressure/dizzy stuff and nausea. Anyway, I have heard of Klonopin but am reluctant to try any more of these types of meds. Just hoping and praying in time, either my body will adjust to what I deal with or something new will come along to help. Yesterday and today have been better---so much better than the last few weeks, but even 'better' is not good, but any improvement is 'better' when you deal with this thing. I even tried the Nortryptlyine 2 different times and that gave me bad side effects--made me feel worse. Anyway--hang in there, we will 'get thru this'.
Lol Yanksgirl! Nortryptiline is what made me walk like a drunk person! While it may work in general as a migraine preventative, it doesn't seen great for those with MAV. As I mentioned, the MAV gold standard seems to be Verapamil, and some Dr's think Effexor is also good. Some ENT Drs even add on Verapamil to folks with just Menieres since the is such overlap with migraine. Check out Dr. Timothy Hain's site. I think it is something like dizziness-balance.com He is out of Chicago, and if I was closer, I'd be there in a heartbeat. All of my Drs think this will go away when I get through menopause. I hope so! BTW, I also have pressure attacks on my left side of head. Not really painful but terribly uncomfortable. It's always that side, and that is the same side ear that went deaf for several days, leading them to wonder about a menieres diagnosis. I also have constant tinnitus in that ear for 2yrs. I have an ENG test in a few weeks. Anyway, my neuro says the pressure thing is all related to migraine.
So the question of the day seems to me to be, "have you tried Antivirals?" I'd call Drs and ask not only if they specialize in Menieres and MAV, but if they will prescribe or have ever prescribe Antivirals? You can print out so much about Antivirals here on the forum to support the theory that before invasive treatments an antiviral treatment should be tried. Valium, Zanax, and Klonipin just put a bandaid on the symptoms. They will not help you be some unsymptomatic. The Antivirals don't help everyone and there seems to be a variety of dose age amounts. They do seem to take a few months to really kick in. Anything is worth a good try. I can feel your disgust with dealing with this decision. Don't get disgusted, become proactive! I wish you the best of luck with anything you try and keep us posted.
Yes, tried the antivirals--got in touch with Dr. Gacek, then told my primary the dosage recommended. My Ent said 'ok' to them but would not prescribe them. My primary did so only because he knows me and knew I needed to try them to either get a 'good or not so good result'. Well, they didn't help--at all! So, thanks for the suggestion--as I know many here have been helped. I just haven't.
Not sure where that is, but 'yes', I've had chiropractic treatments over the years for cervical issues. They are much better now--one thing that is very good! I even had cervical disc injections for the intense pain due to bulging discs in my neck. Did therapy, including traction, etc. I also went thru 12 weeks of acupuncture and that didn't help either. Just doing my best to 'deal' with it--as we all are. Thanks for the suggestion.
You sound like.me Yanks girl. Doctors.are not as helpful as we need. I hate all the dizziness and vertigo. Every time I think it has gone away it returns. Like you I have to keep after the doctors. It is draining and frustrating. But if we are not our Best advocate we don't stand a chance.