came off my MAV med today

Howie2

I will let Adam , HBEP, Scott add as they know a ton more than me. As far as what my doctor told me there is no cure but.......... 50% to 75% if become stable on a medication combo for a while can remain stable off the medication.They tried that with me and if you read my recent posts I was not lucky. I am in the midst of a nasty relapse. reloading on medication which takes a while to kick in till I get to the right dosage. But as Adam told me...This is a firm diagnosis if diagnosed by a Headache Specialist.. There are a ton of drugs and combo of drugs to try.. I would keep trying as it is trial and error......

meniero

MNSK, It's almost like you were reading my mind. I was just going to do some research on TMJ which I was diagnosed with in college about 15 years ago. I clenched so hard, my jaw was literally stuck in position and it clicked for a long time. During this past year, at one of my visits to my dizzy doctor, I told him of my ear fullness and he said it was probably due to TMJ or clenching. I thought he was crazy, but now I'm trying to make a conscious effort to stop clenching and see if that helps with the ear popping I have going on right now. I'm pretty sure you can get a mouth guard now at any drug store, it would probably be a good idea to wear it at night as well. Good luck. m.

alexiwildchild

wow, sorry that one didn't work out for you...but don't give up---there are many more to choose from! i tried the night guards, but i just can't keep them in my mouth all night--i always wake up and they're on the floor cuz they don't fit exactly right. good luck to you! keep us updated on the next course of action...did he prescribe you the propanol?

mnsk

yes he gave me the propranalol , 40mg , and said ti take it once a day at night ??? weird I think ?

Then , decided I should have some blood tests for .....

anemia
thyroid
full blood count and Iron test.
full hormone test.

This is becuase I said I get migraines with my monthly, and when I told them I have them every 21 days he said that could be polycystic ovarys .
I dont know if that the case but I feel crap most the time and tearful.

I cant have the bloods done till 2 weeks time (has to be a certain day in the cycle).

I dont know where to get a mouthguard from , they dont sell them here in the uk shops .

sheriff56

You could try a sports Mouthguard to start with from JJB or Sportsworld they only cost a few pounds, I get them for my daughter who plays hockey from the ladies hockey section.

I had one made to fit my teeth by my dentist, it's a bit like the retainer braces that you have to wear after having fixed braces removed, they are not free on NHS though and cost me £65.00 but well worth it.

Hope this helps.
Jayne

mnsk

thanks sheriff , I need to do something , really fed up with it all.

went out this morning and felt off balanced aroudn the shops and then the anxiety kicked in , and the dizziness got worse ,
come home feeling exhausted , been 5 years like this and its just not going.

Took a propranalol 45 mins before I went out but it didnt help

so tierd with it all.

sheriff56

I know how you feel it drags you under doesn't it, I went to have a Hep B jab and I got so worked up about it the anxiety took over and I'm bouncin off the walls, I never had anxiety before this, Going to sit down with a cuppa and let it all happen around me. . .inbetween working that is. . lol.
Hope you feel better later today.
Jayne

studyin

Hi mnsk,

I took amitriptyiine too and hated it. Don't worry, there are a large number of anti-migraine meds out there. You just have to keep at it until you get lucky. Taking a single dose of propranolol will not remove any dizziness. It is more likely to take up to 2 weeks to see any redcution in migraine activity and thus dizziness dropping off on such a med. If you are feeling ok on prop for now then stay with it. I believe 20 mg daily is a good starting dose (10 mg morning and night). It's essential you stop the anxiety too. If I have any of that hanging around it ratchets all symptoms way up 10 fold.

So stick with a particular med and follow the dosing exactly to see if anything gets better. If not move on but find a doc who can supervise it all.

Best ... Scott

Howie2

Scott:

My doctor just put me on Klonopin 2 times a day AM and PM to deal with everything until I get to the correct Dosage. He said the Xoloft can take 6 to 8 weeks and I am only in week 3...Last few days have been hell but the Klonopin does help some....

mnsk

What made me sick was my gp said , well what am I supposed to give you to help prevent migraines ? She said that is why I sent you to a specialist.

But why is it , we have to take anxiety meds to help with migraine,
all anxiety meds make me feel ill .

what about antihistamines , can they help ?

Howie2

Just because they are anxiety and Depression Meds Originally should not make you feel reluctant to try them. the Specialist put in a loty of research and these drugs have been proven to help . I was 100% for 1 year. I am in terrible relapse as I am not on any medication....

If you can not handle the medication that is another issue but try to keep an open mind. In my mind these drugs are Migraine Preventatives as that is my diagnosis and that is what was used to help me

sheriff56

This is so typical of a UK GP. . . been there done that, paid for the prescription, binned the meds and started all over again. doesn't it just make you mad!

Antihistamines did nothing for me. . .sorry
Jayne

studyin

>>>But why is it we have to take anxiety meds to help with migraine.
All anxiety meds make me feel ill.

Anxiety revs up the nervous system and by doing so probably lowers migraine threshold to zero not to mention ratcheting up migraine activity. That's my experience - and Howie's too. Valium always knocks out any vestibular symptoms I have as well with or without anxiety. It's a great tool to have in the arsenal.

S

charlotte67

Jayne, I have a friend in Bristol who has been diagnosed with MAV. She is going to see a specialist in London...do you want me to get the name of the doctor?

Scots/howie/adam...I am in my 15th month...and am interested to ask my doctor about MAV. How do you know if you have mav? I have done vrts religiously since the [email protected] months, and have seen much improvement. What I am left with is still off (better than start) in stores/busy places/environments. My eyes seem to still be dealing with depth issues/tracking...just looking at certain things make my eyes feel funny...like the are actually working, and then my ears feel funny too...like the nerve is trying to work (nutty sounding eh?). That makes me feel whirry or lightheaded...and this has gone from all the time...to now it comes and goes...and gets worse when I exercise loads, or in bad lighting/busy places.

Could just be that I am still needed a bit more time for compensation, but my doctor says I should be fine now. What made you all search for the mav diagnosis?

Thanks for your help.