After wallowing in pity for nearly a year of this crappy condition I figure its time to start living and not trying to constantly question what is happening to me. For the past month I have been sticking religiously by the MAV diet… and f*** me, i’ve never been so stressed in the 11 months of having this condition.
In all honesty, i’ve thrown the diet out of the window the past few days and have been much happier.
I used to be a very keen runner and very much into my fitness before all this crap started, so I am going to try out beatles example, of eating healthily, doing lots of exercise and getting physically fit.
I am also considering coming off this medication, all it does is make me feel tired. I will consult with Dr S first, but the way I see things, may as well try getting physically strong and healthy and give my body a chance to heal on its own.
“People are just as happy as they make up their minds to be.”
― Abraham Lincoln
Richy, I just wanted to say that I only found out I have probable MAV after more than 3 years of suffering so I had spent up until then on no medication whatsoever and not following the migraine diet so I can tell you what happened to me by just getting on with life in the way you mention. This isn’t to influence your decision in any way and is purely for your information only.
I had to give up my job after a year because along with the dizziness (which did slowly improve with time) I became terribly fatigued and my neck was very painful indeed. The fatigue was so bad I would say it took me a further year of resting and taking it easy to build my energy back to semi normal levels again. I don’t believe everyone with MAV is affected so badly with fatigue as I was/am. I must be susceptible to it but it is something that you know about so it won’t just sneak up on you, you will feel yourself getting more and more tired if it affects you that way.
Once I had eliminated much of the stress in my life and was lucky enough to be able to do what I could manage all day every day, my energy stores improved. I then tried to do some basic aerobic exercise and keep-fit stuff at home but after about 6 weeks I found that my diaphragm got really tight and I couldn’t breathe properly. I also had some stabbing pains in my heart. I have no idea if this was MAV related but my heart was checked by the doctors and it was fine. The GP told me to stop the aerobic stuff and just get exercise by daily walking which I have tried to do since.
I then slowly built back my energy and also the dizziness lessened somewhat. My neck continued to ache a LOT. By early 2012 I thought if I just lived a fairly careful and stress-free life I would be okay and maybe one day would be almost normal again. I never thought it would go away completely but I felt much more hopeful about my future at that point.
Then summer 2012, under no known stress and with no reason I can think of except having hayfever, I descended over about 2 months into a dizzy hell like being right back at the start again. I was rendered bed-bound. Stumbled on this forum and asked my GP for nortriptyline and then saw a neuro recommended on here who diagnosed MAV. I don’t know if the nori helped me to improve slowly again or if that would have happened anyway like the first time round. I am slowly getting back to where I was this time last year.
I don’t know if the migraine meds will stop another terrible attack happening to me - only time will tell - but I know for sure that without the meds then I am susceptible to huge relapses and I will try anything to prevent them in future. Although I am gutted it took me so long to get diagnosed with MAV, in a way I am grateful for that because it allowed me to see what happens if I don’t take anything. I cannot really find any reasons for the huge relapse so it makes things very unpredictable for me. Some people seem to always know what sets them feeling worse. If I had got diagnosed and gone on meds straight away I would probably be thinking perhaps I shouldn’t take these because I might have got better by myself but I know for me that isn’t the case because I spent so many years not on any meds and I got to see the way this condition worked on me au naturel so to speak.
Sorry that is very long. I just wanted to tell my story and hope it helps someone a bit.
Thanks for your concerns. Its very true this affects us all so differently! Last summer I was doing quite a lot of cycling… (road bike)… distances of around 120km… so energy isnt an issue for me. its just stopping being in motion. I loved the cycling because it made me feel so free and normal. I just hated stopping at traffic lights or having hold ups because then the wobbliness hits. This is really a crazy crazy condition!
The way I see it… I may swell get my body as physically fit as possible. It can only help and it certainly worked for Beatles so worth a try for sure!
Yes it’s definitely worth a go and at least you know what your options are re meds etc if you decide you need them in future. I think you have to go with your gut instinct and individually we all know what our bodies are telling us to do or not do that make us feel bad. You are so lucky not to have the fatigue. It really does make things difficult but do make the most of at least having the energy to do stuff even if you are dizzy. I really wish you well x
I really would stick on the medication for longer.
Why can’t you try the exercise regime plus meds?
I do however totally advocate your change in attitude- it sounds like youv’e really made a conscious decision to take the bull by the horns and thats great.
I don’t altogether buy that the diet is a true help for many of us–sure, there are some triggers that I’m sure affect ALL humans, as there are foods that we were probably never really meant to eat (MSG anyone?)–but for the most part–eat healty and go on with life. I also agree that if you can tolerate the exercise DO IT!!! It is super good for you and will help everything, so why NOT do it?
Now, meds–that is much trickier. I am of the mind that if you find a drug that helps you feel some better–then use it while doing all of the above–why not? On the other hand, if the drugs don’t do anything for you at all, or they harm you in some way, then why use them?
It is a conversation to be had with your doctor. Don’t make the decision alone–your frame of reference may not be as clear as you think it is.
Great plan to go after the exercise. Speak to Dr S though before you throw the meds out the window (there may be a better option for you). Exercise should significantly raise your threshold.
Good luck. I’m trying to do the same as you. S
Great post. I love your positivity.
Exercise has worked wonders for me in the past! Start slow and build up from there.
I’m not sure what is best re meds. That’s something you have to evaluate carefully I guess. You know your body better than anyone.
Perhaps try the exercise with the meds first?
Let’s not let this MAV thing beat us eh? Life is still out there!
I am on no meds and some days are awful but i also want to try the more natural approach like exercise first, good luck Richy.