Yes full ears, that make me feel like my head will explode, tinnitus sometimes depends how long my ears stay with that full feeling! Very sensitive to sound, struggle to listen on the mobile phone or surround sound! Topamax did clear that up for me but my heart was adding extra beats, racing, i couldnt stop shaking, couldnt sleep or eat for days,i got lost in my local town, just couldnt figure out how to get home lucky i had a gps loli also couldnt warm my body up! Was like that for 7 days went to a go who did an ecg and told me to get straight off topa!
My vision has worsened heaps with the pain migraines and same with my ears!
Hi Becky & Dean,
Yes Yes Yes! I have the ear fullness, an ear will block all of a sudden and everything will be distorted then unblock on it’s own, I get the ringing in the ears for a few moments then it stops. I find loud sounds bother me. I know what you mean Dean when you say you feel like you are living in a bubble, everything it surreal. I think that has to do with my vision issues. I have big issues with light. I am always wearing my sunglasses outside and cannot go without them. Any type of light seems really intense to me. Headlights at night are awful for me.
Dean I think the Menieres link is interesting. My mum was also told at one point that it could be related to a rare form of migraine…well that makes sense. And they are talking in some research about some elements being hereditary. Thanks for telling me about your dad. My mum is almost deaf in one ear now and still gets vertigo sometimes but not as bad as when she was younger.
I also understand Beckie about the depth perception issues, the blurry vision and the crazy floaters. I have them all the time and have got pretty used to them 
I’d love to find a med that could help with the eye issues? Although I’m trying to start with the headaches and go from there. Our symptoms are so similar. I find myself saying “yes” as I read your posts. Thank you both so much for sharing. I look forward to continuing to chat about this MAV.
Brookie xx
Dean, Brookie, Becky,
Great series of posts. I feel your pain and share your disequilibrium. It’s really hard when people don’t “get it.” I have that at home. Wife thinks I’m a hypochondriac. Whatever. Have to go to the internet to find people who can relate and care.
Take a look at this link (8 pages long) and see if it resonates with you at all:
healthboards.com/boards/brai … ine-2.html
I think there are FAR MORE people out there that share the symptoms than we think.
Hang in there. Things will get better.
Andy
Hi Andy,
Thanks for your post. I am really sorry to hear that you don’t get the support you need at home It’s sooooo nice to talk to people who do “get it.” So share away, we are here for you and you for me etc xx
Brookie
Hey guys,
I too have a constant dreaded headache. I had what I was told VN to start with, I was doing my VRT exercises very aggressively, after 6 months I got to a stage where I said I think I’m getting somewhere, I’m gonna be better soon, then BAM one massive migraine which left me with this constant headache and that was that. I had only had a few headaches in the 6 months before the constant headache came. I’ve had this headache for 6 months now. It wavers in intensity. I’m currently on 2mg of sandomigran and 35mg of dothep. Increaing the dotehp to a target of 75mg. I’ve come across a few on here that have beat the daily headache with 100mg Dothep, so I’m holding onto that.
Don’t worry guys, we’ll beat it, we just need to find that magic med or combo. One day our angry heads will sigh in relief. Stay strong. xo
— Begin quote from “Barb”
I’m one of those fortunate people who managed to get rid of the headaches with Dothep - it did take a while though and did reduce them from daily to between 6 - 9 a month and not so intense. It wasn’t till I got to 100mg that I actually had one clear month.
— End quote
Barb, I’m currently on 70mg of Dothep, nothing yet. At what dose did it start to work for you, getting them down to 6 - 9 a month? How long we’re you on the 100mg before they stopped?
Has anyone else on this constant headache thread had any luck with their meds yet?
Krystal
Sorry to hear you’re still having daily headaches. Do they last all day and are they ‘full on’ face, eye, neck, back, stuff with the nausea, etc. etc? I didn’t write down the details of when mine stopped being the full blown ‘bedridden’ ones and when they became the daily pain ones! I think it was when they reduced to about 8 a month and I was on 75mg and reduced to 3 or less after a couple of weeks on 100mg. If I hadn’t been concerned about the constipation at that time (and known about Osmolax) I think I would have gone up to 125mg and got rid of them completely. I was also trialling other meds to help with balance issues so I think I was getting headaches from the Periactin & later Topamax - ’ normal’ headaches which I could deal with. It was such a relief to have days without those excruciating headaches - I hope you get to experience those soon!
Barb
Hi Donald,
Thanks for your message. I do struggle with the regular sleep car component as I have young kids that have irregular sleeping habits : (
I’m trying meds atm to help out. I cut out alcohol and caffeine ages ago and have never been a smoker.
Brookie : )