Hi Everyone, I found the site about a week ago and what a relief to find some useful information. Been diagnosed with MD for about two years. Currently the attacks are at all time high and frequency. I have been in bed for 4 of the last six days. I'm on low as Just started JOH regimen and will be driving 4 hours to TampaBayHearing sept. 7th (learned from this site they prescribe in antivirals) Thanks for all the wonderful information it's giving me hope in an otherwise hopeless situation. Blake
Welcome Blake! It is not always hopeless. Many of us have had help with a specific antiviral and others have responded to other Antivirals. There's a lot of information regarding Antivirals on this site. I wish you well in your search for something that pulls you out of it.
Hi Blake, Welcome. We can each talk about our experiences and what we feel are our successes. It took me 8 months to get to the point of no more vertigo. 5 months on acyclovir followed by three months on Valacyclovir. Maybe if I had just started with the Valacyclovir it wouldn't have taken as long. Weird thing is before I started taking the antivirals I had only had six bouts with Vertigo. 3 one year and 3 the next year. Both years were about the same. The first year, the first bout was in January and then six weeks later and then six weeks after that. The same the next year, but after the second bout I got aural fullness. For four months I was trying to find a way to get rid of the aural fullness. In June/july of that year I discovered this forum and antivirals. When I started the antivirals I started having many bouts with vertigo. Everyone said the antiviral route is two steps forward and one step backwards. I was having vertigo and the dizzies almost every day. And this lasted for 8 months. I was the "Stumbling Drunk." I only kept taking the antiviral because the aural fullness was clearing up and I was getting my hearing back and because of the success stories I read on this forum. So, I thought ok I will keep taking them. When I switched to Valacyclovir after 5 months on acyclovir things seemed to be about the same. Then the third month of Valacyclovir- 3 grams per day l stopped having vertigo. It's now been 18 months free. My hearing is good, too. Good Health to You!!
Hi Santa, Thanks so much for sharing your story and giving me some hope. I was just prescribed doses of prednisone and I am only taking it to hopefully find some relief from the tinnitus, dizziness and nausea, until I can get on antivirals (in combination with JOH) I have had about 6 attacks in two weeks. Unlike in the beginning, where after an attack I would snap back to life and feel good again and could carry on as normal, I am no longer feeling good in between attacks. I'm probably under 1000mg sodium a day. I really appreciate you taking the time to share how you have gotten better, it's reading post like that makes me thing there is light at the end of the tunnel. Do you currently follow low sodium?
I try to eat as little salt as possible. Not necessarily for MM. I just know it's not good for other conditions. My first visit to ENT I was given a weeks worth of pred. And told to cut the salt. The pred. Worked. But, not good to take for longer than a week.
Thanks Santa. Doc has me on a week worth as well 60mg,50mg,40,30,20,10. Also taking zofran for nausea, just walking makes me nausea, but haven't had an attack in in the last two days so happy about that. But am hoping to get out of this bed soon, laying around feeling sick is depressing to say the least!
For the "dizzy" days - for me - not the full vertigo room spinning days...meclizine helps a lot. it can make me a little drowsy but it is worth it to not be as off balance or sick to my stomach. Meclizine is available over the counter and even in generic form.
Hi nicmger, I wondered about that meclizine as I was prescribed that in the beginning but then Neuro switched me to zofran. Maybe I will give the other a shot. Today I woke up feeling really good, I could even turn my head from side to side without getting nausea, however after about 5 hours of being up, I felt dizzy and nausea again.
Hi Blake, This is a great site. The people here are Wonderful! I'm finding there is a lot of very nice, fantastic people here at the site offering help, suggestions and words of wisdom. Here is hoping doctors will find a cure and we can all meet and celebrate.
Me too Chris! I hope we can all ,meet up and celebrate when we have a cure for this thing. Like you I am finding a lot of hope here so that is really lifting my spirits and helping a lot.
Newly diagnosed with MD. I am currently 7 weeks on 60 mg of prednisone a day by ENT. The side effects are horrible. In the process of seeing a Dr. that specializes in MD. Are long term steroids a normal treatment? The fatigue, weakness, shakiness is taking a toll. It can be hard to simply prepare a meal at times. Not to mention the swollen face that is uncomfortable and embarrassing. Was curious if drinking so much water with the low sodium diet is flushing what salt I need completely out of my system and causing the extreme fatigue? Thanks in advance for any feedback.
Hi Canoe, You would likely get more responses if you start a new thread of your own. I tried steroids, and they did nothing for me.
Ask your family dr to check your electrolytes. It is a simple blood test. If your sodium is too low, it can cause extreme weakness and ina ility to keep water in the body. I had this happen when i took a diuretic while at the same time followed a low sodium diet.