Hello all! This is my first time posting as I have been gleaning all the great info from afar but I have come to a point where I need to ask for help. Let me fill you in a bit on my history. I was first diagnosed with MM a 2 years ago after my left ear which already had hearing issues plugged up and began ringing. I had just a couple of vertigo bouts over a period of 6 mos and I wasn't sure what it was. After my ENT did an MRI and ruled out tumors etc, he diagnosed me with MM. At the time I was also getting severe sinus infections and had come down with seasonal allergies (which I never had prior) and spent most of my time going from one Antibiotic to another. I eventually had a deviated septum repaired and that cleared all the sinus issues but my MM began increasing in occurrences. I tried getting Anti-virals but he would not prescribe due to the fact he saw no infection finally after much pestering he sent me to see a Neurologist who specializes in MM at Rush Hospital in Chicago about six months ago. He has been a god send he works with me listens to my input and lets me try whatever I need and doesn't criticize what I bring to him. I have tried betahistine which I had no improvement on so now I'm taking a Valtrex, diuretic, Lysine, vinpocentine, Vit D3 (I am deficient), Vit K2, and Vit C. I have been tested for the Herpes Virus, Lyme disease and various other disorders and nothing showed up. I have adjusted my diet and eliminated caffene, dairy, salt (less than 1500mg/day, breads, and lost 20lbs. My Questions are: 1. I have been on Valtrex for 3 weeks 3g per day and I saw my ent and he wants me to step down now to 2g/day for 2 weeks and then 1g/day for maintenance. However I just had one of the most horrifying attacks yesterday should I step down in dosage? Is it too soon to expect an improvement? 2. My hands and feet go numb lately when I have really bad attacks. Is this normal? 3. I receive Bi-monthly shots for my seasonal allergies and it seems that my MM gets worse in the spring and fall when my allergies are at their worst. Is this a common trigger for anyone else and how do you deal with it. Sorry for the extremely long post and thank you in advance for any advice that can be rendered I am running out of options and need some new input. I've been trying to stay as positive as I can and fight this thing but it seems like i'm on the losing end right now. Peace to all.
Hi Fisherman, I too often had pins and needles and numbness in my hands and feet during attacks but i don't know what causes this! Maybe someone will come along that does! I have read about people testing negative for the Herpes virus yet still responding favourably to antivirals. I've also read here that some take longer than 3 weeks to start responding to the antivirals and that sometimes it can get worse before it gets better! I'm no expert but I wouldn't stop or step down the dosage just yet in case the same applies to you. Good luck and I hope you start to see an improvement soon!
Fisherman, are you on name brand Valtrex? If so, I'd stay on the max dose until you get relief or six months passes, whichever comes first. A lot of folks are reporting worsening symptoms at first before it gets better.
Thanks that is what I'm hoping that I just need a little longer for things to kick in. I'm also wondering about MAV now my mother has always suffered from migraines and both my sisters do. I would be genetically predisposed to have them also, just trying to take things on day at a time it's been rough lately.
MAV can usually be controlled with a strict diet. I'll let those folks guide you on that, but the book Heal Your Headache is often cited.