Cure vs treatment

I have read there is no cure for MAV, which to me means once I find the right drugs that help me I will be on them for life. Is anyone visiting this site who were able to get good results on drugs and then able to stop taking?
Maybe there are a few, but they feel good so they stop visiting this site…as always, appreciate the feedback I get here!

Yes, we’ve heard this from some.

Jaybird,

You are correct in that there is no cure for migraine. It’s an inherited genetic disorder.

The name of the game is to increase your threshold and reduce the trigger load. Lifestyle and meds accomplish this.

So, yes, there are people who have successfully achieved this and have gotten on with their lives. I only know of one case where a med was taken for 2 years, they came off of it, enjoyed a 2-3 year remission and then it all came roaring back again. Most others who require meds have to stay on them indefinitely.

Scott

I am struggling so much with this concept as well. Do you think the CSF theory could be the cure we are all looking for? Meds have not worked for me and I am heavily considering going to DUKE. The results seem mixed so far on this site, especially after MavLisa’s heartbreaking experience there. If there is no cure for migraine then how can a change in CSF change a genetic disorder?
I feel more and more confused with all this.
Christine

Rockergirl,
From my personal experience I do not believe the CSF theory is the cure for migraine or MAV. I had a pressure increase, a blood patch and a pressure reduction. I did not have any relief from any of these procedures and enough time has passed that if I were to have relief I would by now. Don’t get me wrong I believe it works if you have a CSF problem. But It is most definitely NOT a cure all. Dr.'s still don’t know what migraine really is, that is why it’s so hard to treat. If you suspect you have high pressure or low pressure you should certainly investigate but I can tell you from personal experience it is not the magic cure for everyone :frowning:
Elisha

Thanks Elisha,
When I spoke to Dr. Gray she seemed somewhat confident in how this procedure performs miracles for some so to speak. What does Dr. Gray say about your experience with the CSF procedures?

Please don’t let my experience discourage you completely. that being said, when I speak specifically to Dr. Gray it does seem like she sees more headaches cases than this. Before I went, I was wrongly under impression that they see tons of “MAV” cases. I am now so very perplexed, as Dr. Gray doesn’t appear to have many cases with my very disabling “MAV” symptoms. I know where you are coming from - I don’t know what to think as well. I really don’t. When we are sick we are willing to try nearly anything (at least I am), and I always feel like “What if” I didn’t try it. The diamox fiasco definitely made the experience so horrible. but, if that didn’t happen, the spinal tap, etc., wasn’t too bad at all. I will keep you posted. still no improvements at all. Is it a long distance you would need to travel to DUKE? remind me, have you tried MAV meds yet? sorry I am forgetting. I really feel for you and empathize greATLY. this is all so baffling and hard to know what next to do

Hi Christine,
Dr. Gray is not really sure what to think of my case. She is not a vertigo expert. She works closely with Dr. Kaylie who is an oto-neuro and he believes very strongly in the correlation of MAV and CSF pressure. So does my Duke Neruo which is why Dr. Gray and I were baffled as to why it did not help me at all. And so far it has not helped LIsa. Lisa and I have very similar symptoms. We both have the 24/7 rocking, fatigue, motion intolerance, headaches. I really don’t know why it didn’t work for us but I personally don’t agree with the CSF link and migraine. I feel bad saying that as Dr. Gray is so kind and she works very hard. I think if you have high CSF pressure you don’t really have migriane, you have high CSF pressure (or low depending on if you have a leak or not). Does that make sense? I’ve spoken in great detail about my experience at Duke with a neuro-opto here in Charlotte who also aware of and respectfully disagrees with the CSF/migraine theory.

However, how are we to know if we have high pressure, low pressure, a leak etc. with out doing the procedure? That is why I don’t regret that I did it.

And I do agree with Lisa, Dr. Gray really does focus on the headaches more than the vertigo. Whenever I talk to her she focus’ more on the headaches, which I do have, but the vertigo is so much more of a problem.

Also as Lisa said, please don’t let my experience discourage ANYONE from proceeding with this avenue. Had INAFOG not gone she would have never known she had leaks. Not to speak for her, just from what I understand.

Hi Jaybird,

Although migraine (of any sort) is a lifelong condition, a lot of people have spells where they are a lot better than in others, and people often seem to find migraines become a lot less frequent with old age. My father (65) hardly ever gets migraines now, whereas when he was my age (30s) he had several a week, and his mother (late 80s) never gets them any more.

I think you are right to think that someone who has a good result with medication, and manages to come off it and still feel ok is far less likely to stay on a board like this, so you tend to get a skewed view of things, as those on the board do often tend to be the more difficult cases.

Personally, I took medication, which got things under really good control, and I have stopped taking it for over a year now. I very occasionally get symptoms, but nothing overwhelming or that I can’t deal with quite easily. I don’t consider myself cured, but I’m at a point where I can do nearly all things again, and it’s certainly not the limiting condition it was for me back in 2010.

Thanks beechleaf…i am starting to feel better after trying about everything for 4 years and now in week 3 of verap and Celexa …I would guess that when I do feel good, I can’t imagine experimenting to stop taking it.

Thank you Elisaha and MavLisa for the responses,

I appreciate your not wanting to discourage me, but I just don’t have too many people to compare with. I too have the 24/7 rocking and head symptoms and feel quite desperate. The trip would be very far and costly for me. And I would need someone to accompany me as well.

Lisa, I have tried so many of the meds. I can’t even remember them all at this point but some of them are verapamil, topamax, nortriptyline, diamox, valium. I know there were others but some I wasn’t on too long so I just can’t remember.

I was wondering if either of you felt you were worse off by going? Lisa, does Dr. Gray have any follow up with you? Do you also see a doctor where you live and will he continue to be your doctor?

Christine

— Begin quote from “Jaybird”

Thanks beechleaf…i am starting to feel better after trying about everything for 4 years and now in week 3 of verap and Celexa …I would guess that when I do feel good, I can’t imagine experimenting to stop taking it.

— End quote

Yeah, I know what you mean!
But I put on a lot of weight with my treatment, and hated that, so I had an incentive to try without it!
Good luck with your new treatment and I hope you soon have really great results from it.