I was recently diagnosed with MAV in January after being dizzy since late 2012. I’ve been on Gabapentin since February, but no results. I’m going back to the Cleveland Clinic on the 20th to see Dr. Cherian, and I’m hoping he’ll have me try another one of these many meds that people seem to be getting results from. Anyway, my mood shifts from up and down every day, and sometimes I find myself dwelling on these forums for hours, looking for a glimmer of hope in the seemingly endless sea of posts from over the years. Occasionally it’s very disheartening, but sometimes, when I find the right posts or success stories in the right succession, I really do feel hope that I’ll get better. Other times, I just dig myself into a deeper hole of anxiety and depression.
Anyway, I think it’s good to have an immediate place where members can see words of encouragement and such - much like the success stories forum, which unfortunately seems to be the only popular positive thread on here at the time being. How about starting another thread right here where people can come and offer nothing but positive reinforcement and personal accounts of how they’ve gotten better? I think it’d be a good place for people to come for a quick daily pick-me-up if it becomes popular enough.
So, people still visiting these forums who are 80, 90, or 99% better - post away! Let us know that it CAN get better!
Hey Nick I had MAV for about 4 months from March until July 2013, it was quite intense at first and then lessened until I had no MAV at all! 100%. However, I have still suffered with other migraine symtoms despite the dizzy side of MAV going. I couldn’t pin point it to anything particular I did it just seemed to go on it’s own like healing over time. The only things I can remember doing was VRT (which I looked up myself on youtube) and I went on the trampoline (twirling about) a lot to try and get my balance back and sat in the sun a lot. I was on propranolol but I’m convinced this didn’t do much for me. Keep looking for a cure and don’t give up! I am still looking for a cure to my other symptoms but hopeful I will eventually find one.
Thanks for your reply! It’s amazing it seemingly went away on its own - the dizziness, anyway. Are you able to work full-time and live a fairly normal life, all things considered?
Well, 3+ years on from diagnosis I’m about to go on my 3rd long haul (20+ hour) trip - this time to America. No issues with flights so I can enjoy travelling just like I used to (well, no-one really enjoys spending that much time on a plane). Take that MAV :lol:
Yes, Lorcalon! That’s great to hear. You definitely seem to be a solid example of someone who is functioning very well with MAV yet continues to check up on these forums to offer hope and inspiration! I don’t know if you like to say that you’ve “beaten” it, but it certainly seems that way from what I’ve seen you post on here. You gave me quite a bit of hope when you commented on my earlier post when I was feeling quite down, so hopefully your success will continue and more people will be able to see that it does get better. This is what I keep trying to remind myself of when I’m feeling down. Can’t thank you enough for staying on these forums and keeping people’s hopes up.
Good idea Nick!
I remember when I first found this forum and was very ill I could not imagine getting my life back! The support from other forum members was invaluable and kept me going while I found a med to help - which wasn’t easy but every time I felt like giving up someone would be there to offer encouragement.
Now, more than three years later I am back living my life (not quite as it was but pretty good!) and that’s one reason why I like to stay around the forum and offer other people support when I can. It’s pretty scary going through those early times not knowing what is wrong, having doctors who misdiagnose and have no idea what meds to prescribe.
I also like to keep tabs on the latest research and preventatives for Vestibular Migraine. It is a chronic condition and I still seem to be ‘tweaking’ my meds to get improvement!
Have you got your list of questions for Dr Cherian? Your anxiety levels seem pretty high - a SSRI/SNRI could help.
Thanks for your input, Barb! I’ve seen your name pop up quite a few times throughout the forums and saw that you’ve tried many, many different meds - pretty much everyone I’ve ever heard of. I was curious myself whether you ever found one that worked, but apparently you did, and that’s great to hear. So you’ve had MAV for three years? How long have you been back to living your life? Also, just out of curiosity, are you able to hold down a full-time job? I think that’s one of the main things many newbies are afraid of, not being able to work and all. And yes, I’ve got quite a list prepared for Dr. Cherian…and I think something to combat my anxiety would work wonders.
Hiya Nick, yes I work full time now. I went back to work after having 3 months off. I found the whole of my migraine symptoms lessend as time went on. I live the life I had before I got chronic migraine except I don’t work night shifts as this is what I think started it all off so I am always careful about getting enough sleep and don’t have any caffeine. I go out and go running and do all the things I want to do. I still get annoyed with my other migraine symptoms and I’m constantly looking to resolve these with some type of cure e.g. diet or medicine but it doesn’t hinder me in anyway. Hope you find something that works for you soon!
Thank you, and it’s so cool that your vertigo/dizziness just went away! Great to hear you’re back at work. What are your other migraine symptoms? Just the headache/pain?