Hey Kidz, Its been awhile..indeed. Still on the trial and error drill with these danged diseases…Migraines and MM. Report Card: Still dealing with cognitive challenges and now have the Department of Rehabilitation helping me sort out if and how I can get to work. Living off my savings for past 3 years dealing with this nightmare. My thresholds…stress, mold exposure etc, all affect my symptoms so much it seems like life is too much :-X Got so exhausted from the contant ear distress went back on a round of prednisone and felt for about 6 days what life is like without it. Hooray! BUT after a slow taper off, right back in it with a triggering of daily migraines which I was without for a number of months. Urg. Been on and off Serc a couple of times with no ascertainable benefit. Expensive. Next. That was Dr Derebery's $1000 suggestion. On the fourth and final migraine prevention drug…Verapimil…on day 6 so far titrating slowly and no serious side effects…may be helping. I was told 30-60 days to know for sure. Diet seems to have no impact what-so-ever….do avoid many triggers anyways…but no rhyme or reason for this. New One: Nausea to stop the band. Got Sea Bands which help if it is just slight. My ENT said no Meclizine. I bought some anyways yesterday Took two 12.5 mg tabs yesterday and waited. Although I was groggy, I could eat after many days of forced crackers and butter…gluten free of course. I did manage to go out last night and enjoy myself and my ear was clearer this morning that it has been in a couple of months. Cause? Effect? Who the f--k knows? Took more today…12.5 mg ,twice about two hours apart. Feel like this grogginess subsides if I am doing something that engages me like writing ya'll ;D Nausea GONE!!!!!! Another New One: Hearing Aid. My medical insurance was willing to pay 100% so my instincts said give it a go. Again my ENT said not a MM treatment. Immediate improvement 8) Because the sound gets in, the fullness is unnoticeable, the tinnitus minor, and if noise is a problem, its from the outside, not the inside. Sooooo much better!!!!!!!! Swimming is good. I've always been a mile-lap swimmer and with the silence of being under and in-and-out of water, there is no migraine nor MM. It loosens me up and makes me feel, at least for 45 minutes, I am whole, healthy, young, capable and vibrant. Damned mirrors ??? Scanned the posts of late. Sorry for all of you going through this crap too. Know you are loved :-* Holly
Oh… for you newbees…I've been on JOH and antivirals for a year…not sure how much this helps but what can't be known is how much worse things would be if I wasn't ;D
If you get drowsy from meclizine have you tried the regular dramamine which is Dimenhydrinate. This one does not make me tired where meclizine ( non drowsy Dramamine) makes me tired. Work well during the day for me when I feel a head fog
Good to hear from you Holly. I remember my first visit to ENT. One week of prednisone which made me feel good. Of course not good to stay on it too long. I asked for more, but I didn't really want to take it. But, I hated what the mm was doing to me. I didn't get more. I wish there was something that works as good as prednisone that doesn't have so many bad side effects. Looks like you should go out more often :-\
@ Santa..I went out last night to an art opening for John Lennon's 75th BDay. Twas fun. I wondered about using a low dose Prednisone daily like some people who have rheumatoid arthritis. One woman I know said it saves her. @ Carissa..no since the Meclizine works so well, I will play with taking low doses when the nausea is too much for the Sea Bands. Find the right dosage. I think some of the drowsiness is hopelessness too. :'(
John Lennons 75th Birthday...Art Opening. I'm sorry, girl, but that's a huge highlight no matter how shitty you feel. I do hope you find a better way to treat your symptoms and feel better soon. (((Hugs)))
Good to see you here! Happy for the ups, sorry for the downs. What a crazy complex thing we all face. :-*
Yea..now the nausea is so bad…can hardly eat…move…but my ear feels better. WTF??? Truly getting to the ned of my rope..if I could move to find it. :'(
Holly- I'm not sure if you live in a medical marijuana state or not, but if appetite is an issue, it's something you might consider. Just food for thought...
I do have a license for that. The problem for me is the it usually exaggerates whatever I am going through so it usually makes thing worse. Wish it weren't so...