(Vestibular Migraines) Feels like I have been lied to my whole life...

[StirlingSilver83]

So a little background...I have been on this board for years and it is seriously one of my favorite places to go online. The people hear are so nice and understanding and I feel like I need to vent out some frustration and my family just doesn't understand what I am going through...

Ever since I was 10 years old I have had these episodes of extreme vertigo. My complexion would go ghost white, I would throw up, and then pass out during episodes. The episodes would be worse in the summer and about 9 times out of 10 would be when I was riding horses. As I got older the episodes got more frequent and worse. I finally went to see an ENT when I was 14yrs old. They diagnosed me with Manieres Disease and put me on something called Diamox. That helped A LOT it kept the vertigo episodes at bay and I felt normal again and didn't have to deal with these extreme cases.

I lived my life normal, continued my riding, met my husband, and as long as I kept taking the Diamox everything was ok. When I was 22 I got pregnant with my 1st son. I had to go off my Diamox...the first 2 trimesters were ok except for the occasional morning sickness. The last trimester I thought all hell broke loose...my vertigo that had been at bay from age 14 all the way to 22 came back with full force. My entire last trimester about 3 times a week I got these severe attacks where I would throw up and pass out. It got to be so bad that my OB put me on bed rest for the last month. I made it through the pregnancy and the baby was ok thankfully and as soon as I delivered him I was on the phone with my ENT to get an appointment with my ENT. They put me back on the Diamox but ever since the pregnancy I still have not been completely ok like before. I don't have those severe episodes but I do get very dizzy and it does prevent me from doing things I love like riding my horse. They have uped my Diamox in these last 9 years and I have also had a 2nd son and that pregnancy went much smoother.

In these 9 years though my older son has needed ear tubes and has been through 6 sets. I took him to my ENT that I had from the time I was 14yrs old. I ended up taking my son to a different ENT though bc I felt that he should not had to go through all those ear surgeries. When I switched his ENT I ended up following bc I felt that the ENT I had wasn't doing much for me bc I was still getting dizzy. We went to a new ENT and they ran all kinds of tests on me and in the end they said I needed to see a neurologist bc they didn't think my dizziness was due to the manieres disease. I went to a neurologist and they put me on Topamax for migraines, but I was STILL getting dizzy. I went back to the ENT and they told me they couldn't help me anymore and that I needed to see a specialist in NY but didn't give me any clue as to who that would be. I felt hopeless...then my primary dr gave me the name of a new ENT. I went there and he told me I needed to see a certain specialist at the University of Penn and that he would call the office and tell them to contact me.

I got an appointment with them. I waited 2 months for this appointment. I had this appointment yesterday. They did a TON of rigorous testing on me and basically made me sick and it was the worst thing I had ever experienced. After the testing I met with the Dr. and the Dr told me my testing came back completely normal and there was nothing wrong with my ears. He also told me that even though there was nothing wrong with my ears the test did come back that I have something called Vestibular Migraines. They also told me that I didn't have manieres disease and all my problems for the past 20 years have been because of these vestibular migraines. They said I needed to see yet another specialist that specializes in these. There is only 1 Dr in the state of NJ according to this website that I looked on. When I called to get an appointment with him they are booking new patient appointments the end of September!

I know I have dealt with this for 20 years and whats another couple of months, but I feel like my life could of been a lot different if I have known how to deal with these or treated them better. Now I have read up and apparently diamox is used to treat this but maybe its not the right thing for me if I am still having all these issues. I just feel like crying and I feel like I am never going to get the treatment I need and I am going to be dizzy forever.

Sorry for this long post, but I just needed somewhere to vent. Does anyone else on this board deal with Vestibular Migraines? I would like to hear that its going to be ok and I am not going to be dizzy for my whole life.

 

[mommasita]

Sorry to hear about this 20 year ordeal. Wow.

I don't suffer from Vestibular Migraines, I do have Chiari Malformation, and have had a couple of surgeries, the last was May 2010. I do understand, and can totally sympathize with trying to get a diagnosis. It is far from easy. I am fortunate to have a team of good and compassionate doctors who i see regularly. I have returned to work after a 6 year hiatus in June of last year.

I take Topamax, and it does help me. A LOT. Before taking it I had regularly headaches that landed me in the ER on a cocktail of meds at least 2x a month. Unless I am totally overdoing things, I don't end up popping my migraine prescription more than once every few months now. I do have some issues, permanent memory loss, and a few other things, but I work with it as best I can.
I am not sure if it the Topamax combined with stress of late, but I do have the weight loss, and now the Dr's are running tests. I don't suffer the other issues with it.

Are you able to go out of State, PLEASE don't give up. When I was trying for a diagnosis I was ready to give up too, but I kept going, I know how hard that is. You are worth it, if you can seek a Dr perhaps out of state?

Hugs, I know how hard it is to keep going when you hit walls

 

[StirlingSilver83]

Sorry to hear about this 20 year ordeal. Wow.

I don't suffer from Vestibular Migraines, I do have Chiari Malformation, and have had a couple of surgeries, the last was May 2010. I do understand, and can totally sympathize with trying to get a diagnosis. It is far from easy. I am fortunate to have a team of good and compassionate doctors who i see regularly. I have returned to work after a 6 year hiatus in June of last year.

I take Topamax, and it does help me. A LOT. Before taking it I had regularly headaches that landed me in the ER on a cocktail of meds at least 2x a month. Unless I am totally overdoing things, I don't end up popping my migraine prescription more than once every few months now. I do have some issues, permanent memory loss, and a few other things, but I work with it as best I can.
I am not sure if it the Topamax combined with stress of late, but I do have the weight loss, and now the Dr's are running tests. I don't suffer the other issues with it.

Are you able to go out of State, PLEASE don't give up. When I was trying for a diagnosis I was ready to give up too, but I kept going, I know how hard that is. You are worth it, if you can seek a Dr perhaps out of state?

Hugs, I know how hard it is to keep going when you hit walls

I am willing to go out of state, but even then I am having trouble finding a dr that specializes in these types of migraines. I am also a little dr shy right now. I feel like I have been on a merry go round with drs and that no one truly knows what they are talking about. I thought I found a decent dr and in his bio that I read he sounded PERFECT but then I read reviews about him and almost all the reviews said he was a total jerk and not compassionate to peoples feelings at all. I want a dr that is going to be compassionate about what I have had to live with and that will try to help me the best that they can without sending me on a merry go round again. I hate being dizzy all the time. I want to ride my horse, and I mean there are some days where I get up and I feel 100% and I know I will be ok to ride that day but those days are few and far between. It just really sucks...I also wish that I can just go on a mini vacation to kind of get away from reality for a bit and clear my head but with my schedule its just nuts between dog shows and my kids horse shows and my kid is very active in 4H...I feel like there is no me time. Its extremely frustrating and I almost do feel like giving up and I am just going to have to get use to the fact that I am dizzy all the time and I may every once in a while wake up on a good day and be able to ride my horse. Its very frustrating and upsetting. I am so upset that I can't even concentrate on planning our 2017 Disney trip anymore which is something I LOVE to do.

 

[Christine]

OP, this seems like a sort "new" thing so I am sure that when you were 14 they didn't even know about this.

I do think it's odd that you never mention headaches as being an issue, although it seems that they go along with the vertigo, but don't *have* to. Do you get headaches also?

I know it feels hopeless and being dizzy is the WORST, but hang in there and make sure you get with the specialist so you can know for sure if you have it and get on the right medications for it.

 

[summerw]

I had vertigo for years. It started after a deviated septum caused sinus pain for years that a gp told me was just allergies. By the time I got to an ent, who said my sinuses were 100% full and not draining, I had started clenching my teeth, mostly in my sleep, to deal with the pain which in turn caused tmj and lots of queasiness which culminated in an episode of vertigo that occurred pretty much any time I moved for months. I've been told that the vertigo was a virus and get over it and my jaw has nothing to do with my ears. Finally last year a new ent sent me to balance training. I've never been super coordinated but I never thought I had balance issues. What the physical therapist taught me is that your eyes, inner ear and muscles work together to give you balance and equilibrium and my brain wasn't matching it all up. She worked with me on balance boards, dealing with patterns like light coming through slits in the blinds and complicated shapes and patterns like you get in the grocery store. It changed my life and got me back to the gym and happy to open my eyes in the morning or roll over in bed without wanting to puke. It was going great, but one thing the pt mentioned was how even minor dehydration can cause it to feel off again. I was neglectful about the water for a week and I started getting symptoms. I don't know if any of that sounds familiar, but if it does, maybe checking out some balance pt and hydrating could provide some relief until you get into the new dr. Changed my life. I'm sorry you had years of a bad diagnosis. The vertigo isn't the only time it's happened to me. Always be your own advocate and good luck!!

 

[StirlingSilver83]

I had vertigo for years. It started after a deviated septum caused sinus pain for years that a gp told me was just allergies. By the time I got to an ent, who said my sinuses were 100% full and not draining, I had started clenching my teeth, mostly in my sleep, to deal with the pain which in turn caused tmj and lots of queasiness which culminated in an episode of vertigo that occurred pretty much any time I moved for months. I've been told that the vertigo was a virus and get over it and my jaw has nothing to do with my ears. Finally last year a new ent sent me to balance training. I've never been super coordinated but I never thought I had balance issues. What the physical therapist taught me is that your eyes, inner ear and muscles work together to give you balance and equilibrium and my brain wasn't matching it all up. She worked with me on balance boards, dealing with patterns like light coming through slits in the blinds and complicated shapes and patterns like you get in the grocery store. It changed my life and got me back to the gym and happy to open my eyes in the morning or roll over in bed without wanting to puke. It was going great, but one thing the pt mentioned was how even minor dehydration can cause it to feel off again. I was neglectful about the water for a week and I started getting symptoms. I don't know if any of that sounds familiar, but if it does, maybe checking out some balance pt and hydrating could provide some relief until you get into the new dr. Changed my life. I'm sorry you had years of a bad diagnosis. The vertigo isn't the only time it's happened to me. Always be your own advocate and good luck!!

Thanks for the reply...I finally got in with a dr that specializes with Vestibule Migraines. Apparently according to him I have a classic case of it and I should have been diagnosed that way when I was 10, bc according to him whenever children experience issues of severe vertigo like I was experiencing its usually always some form of a migraine. Anyways he is weaning me off the meds that I have been on since I was 14 for the 1 diagnosis and increasing my migraine medicine...hopeful this will fix the problem I am having...I am a little nervous about going off the meds that I have been on for ever, but hopefully this new situation will help even more and I will start to feel better.

 

[summerw]

Thanks for the reply...I finally got in with a dr that specializes with Vestibule Migraines. Apparently according to him I have a classic case of it and I should have been diagnosed that way when I was 10, bc according to him whenever children experience issues of severe vertigo like I was experiencing its usually always some form of a migraine. Anyways he is weaning me off the meds that I have been on since I was 14 for the 1 diagnosis and increasing my migraine medicine...hopeful this will fix the problem I am having...I am a little nervous about going off the meds that I have been on for ever, but hopefully this new situation will help even more and I will start to feel better.

That's great! Definitely stay more hydrated than seems necessary. That you got them more in summer really stood out to me. And great hydration is good for migraines and vertigo as well as everything else. I hope thie new meds change your life!