Update :-)

Hello MAV Friends,

It’s been a while and just wanted to give an update and some hope.

My symptoms started in Nov 2011 and I was diagnosed with MAV after much testing (including the dreaded VNG/ENG testing) in Aug 2012.

I first started with Verapamil and Diamox but discontinued them because of side-effects. This is before I really knew what side-effects were.

At the same time I stopped the Verapamil and Diamox I started Topamax. In retrospect a BIG mistake. Should have come off of Verapamil and Diamox, kinda detox a little and then start the Topamax.

I started the Topamax in the beginning of Oct 2012 and had horrible side-effects even as I was titrating up to 100mg. The side-effects did ease up enough for me to try and up my dosage again in Dec. I chose a rather aggressive increase because of the timing and the support that was available to me because I knew the side-effects would be horrible…they were. I got up to 200mg but by Jan 2013 I was coming back off. During my Topmax trail, I did the “Heal Your Headache” diet which was easy because I had zero appetite. I can say I gave Topamax a good try, but it just was not the med for me.

In late Feb I finally bit the bullet and had a Lumbar Puncture…of course I had a leak and had to get a blood patch done. My pressure was 20. Top of normal on some charts and high on others.

After recovering from the LP I decided to continue my respite from meds and slowly started getting better. In my opinion it was the combination of having decreased cranial pressure for 5 days, plus all the weight I lost on Topamax (40 lbs but most of it was weight I put on being so sedentary with MAV symptoms). My Doc thinks it was the Topamax, but I don’t think either one of us really knows why I got better.

It wasn’t an instantaneous-wake-up-one-morning and feel better kinda thing, it was slow, over a several weeks were I noticed that things were getting easier, I was feeling steadier, and just generally better and better.

The only thing I was taking for MAV was Magnesium and I’m not a real supplement/vitamin taking person. I still take it everyday and would highly recommend it.

Sooo, where am I today. After being out of work because of MAV, loosing a love because of MAV, realizing what family really means because of MAV, I AM BETTER!!! :slight_smile:

I was able to do some really cool projects for work (theatre stuff), I was able to be on stage again (in the leading role), I’m able to go out and enjoy all the things I will never take for granted again. I can walk, work, go to the grocery store, think, go out to dinner, go see shows and the ballet, go to the movies, plan for the future, enjoy a glass of wine every now and then, swim in the ocean, sing!, etc. etc.

I’m not 100%, I’d say I’m at about 85%, but I was at 10%. A few things are still a little difficult. Showers aren’t always great, ladders are still a no,no, but I am so much better. I’m working with my Dr to get to 100% but am sooooo grateful to be where I am today. I’ve been getting more ocular migraines of late, but have been eating pretty much whatever I want and they usually happen after I haven’t been taking care of myself.

So if you’ve read this far (sorry this is long), PLEASE don’t give up hope. There is hope. My thoughts are with you all. I’m so very grateful for this forum, it literally saved my life.

Judy

Judy, Hi!
Lovely to read your story, perfect timing for me to hear these positive words as I’m in struggle town…I just posted before you so won’t go into it again. I’ve been “well” for the past month and now I’m back on the couch I feel like I’m letting people down, my family especially as its been such a rollercoaster for my husband especially. I’m lucky he’s in it for the long haul, I hope!! But it is such a terrible illness, doesn’t help that not many people know about it and the constant trying to explain is really tiresome.
Anyway great stuff for you!! Heres cheers to it continuing, Jan

— Begin quote from “janelladean”

Judy, Hi!
Lovely to read your story, perfect timing for me to hear these positive words as I’m in struggle town…I just posted before you so won’t go into it again. I’ve been “well” for the past month and now I’m back on the couch I feel like I’m letting people down, my family especially as its been such a rollercoaster for my husband especially. I’m lucky he’s in it for the long haul, I hope!! But it is such a terrible illness, doesn’t help that not many people know about it and the constant trying to explain is really tiresome.
Anyway great stuff for you!! Heres cheers to it continuing, Jan

— End quote

Hi Jan,

Just read through your posts and with the exception of different meds…I feel ya’! Neck and shoulder pain…yes, the struggle with family and friends being disappointed in you…yes, mourning the loss of your old life…yeap. I totally get it. I had a very brief period in July 2012 where I was about 50% and over committed because I thought I was getting better and then had to back out of stuff when the symptoms came back full force. All in saying, I really get it!

I too got very tired of trying to explain MAV so I stopped. I told people I had a neurological disorder that affects my balance. At first I felt kinda guilty about saying this, but after a few times…nope. For good friends who really cared I would explain MAV, if it was an acquaintance, I would give the standard “I have a neurological disorder that affects my balance. It’s treatable with medication and I’m trying to find the right mix” and you know the great thing when I said that? I didn’t have to hear about their bouts of vertigo that they got once and it lasted for 2 days, I didn’t have to hear about people getting the spins after drinking too much, I didn’t have to hear about headaches or migraines or inner ear infections. I just got well wishes from people. I know people mean well, but unless you’ve got MAV it’s really hard to understand how completely life altering it can be.

What I’ve realized as I’ve come out of this (knock wood), is how many people really did care and just didn’t know what to do or say. They said they felt helpless because there was nothing they could do to fix it. Sometimes you don’t need it fix, you just need a friend to call you on the phone and have a good chat. Reach out for those little things that people can do, even if it’s just listening.

Hang in there, PLEASE don’t give up on hope…especially on the days that Hope is all you have…I get it.

Sending you positive healing thoughts!!
Judy

Hey Judy, I have often wondered about you but great to hear you are almost better!

I remember when you were really down with it so it’s amazing to hear a success story. So you aren’t on any meds really but it could have been Topamax that sorted you out or maybe just time… I knew someone else who went on a really low dose of amitriptyline for a few weeks and then came off it and was recovered. Really lucky if that’s the case!

Hoping it continues this way for you and you can forget all about MAV x

I’m so happy that you are feeling better,thanks for sharing your story.Very interesting about the patch.I know several people have tried it here.

I’m so glad to hear you are doing so well. I think we were dealing with Topamax at about the same time. (I do believe there could be an entire forum for Topamax stories - I can’t believe anyone makes it to 200, I’m holding at 50).

Thanks for sharing your good news and may it continue!

Hi Judy
Fabulous to hear you are back on that Stage again - you always did sound like nothing was going to keep you away from those ‘boards’! I like your explanation to people about MAV being a neurological disorder & needing to find the right meds to help the balance probs - I’ve used that one myself.
Thanks for posting your success story - your Topamax journey sounds horrendous - it took me six months to get up to 100mg and often felt like quitting because of the side-effects but glad I persevered 'cause, as you say, things do get better!
Barb

Judy, thank you so much for your lovely post, I really needed to hear that.
I’ve just had 3 days of terrible migraine and am on the other side of it now. Phew!
only just read your reply and just wanted to say thanks :smiley:

Hi judy,

Just wanted to congratulate you on getting to the magical 85%… It seems to be the normally path to hit 85% then to all the way to complete recovery. Well done on sticking at it and I hope this horrible illness stays away.

Dean

Hey Judy,

Thanks for updating us all on your progress and so very happy for you that you are doing so well. Long may it continue! :smiley:

Hey Judy :slight_smile:

What a lovely post , I’m so thrilled for you :slight_smile:
It’s hard for people to begin to comprehend what we go through daily that’s why this forum is such a godsend. Thank you for taking the time to report in with your progress, long may it continue!

X

Great news Beachgal. :slight_smile:

So glad you are feeling well and have gotten over this migraine nasty patch in your life.

Good, good for you . . .

                          . .  . and I bet that "right meds" line is going to introduce you to some believers in homeopathy/naturopathy/other pathetic systems.