My story - please read and provide feedback

hi, i’ll try to not make this too long. i would greatly appreciate it if you would read through my story and give me any feedback or similar experiences you have.

i have been having vertigo symptoms since april of last year. one day, i stood up after laying in bed for a while, and i started feeling strangely dizzy, but i thought i could just shake it off. within a couple of minutes, however, the floor was rocking so violently that i was walking like a drunk, and soon the whole room was spinning so fast that i was pulled to the floor and i thought i was going to pass out. my boyfriend took me to the ER and they gave me some meclizine and told me it would get better soon. i went to see another doctor who said it was probably an infection, and she gave me antibiotics and decongestants and sent me on my way. for the next week and a half or so i had extreme BPPV throughout the day, and for the next couple months i would get it when i layed down in bed.

there was a period of a month or two when i was feeling just fine, except for the popping in my ears that had developed (and has never gone away). then in august i got the similar symptoms of dizziness and BPPV again for a couple of weeks. after that point, i would get vertigo every few weeks, until eventually it became an everyday occurence.

i have had pretty much every test done that can be done. i have seen several ENTs, neurologists, physical therapist, and GPs. i had an MRI, MRA, vestibular testing, hearing testing, a test for seizures, and others. i saw Dr. Timothy Hain in Chicago last November and he diagnosed me with migraine associated vertigo along with BPPV. i do not have the headaches that many people with migraines had, which made me so surprised when he said that was what i have.l however, it is the one that makes the most sense. he told me to start topamax and said to do the exercises.

every day of my life has become a major challenge. last semester was my last one of college, and i basically sat inside my apartment everytime i wasnt in class. i dont even know how i passed my classes, considering i missed two full weeks and countless others. i havent been able to get a job yet. i feel so horrible everytime i spend a half hour at the grocery store, i dont know how i would be able to stand 40 hours a week at the office. i never know what days will be bad ones and what days will be better ones (i never have good ones anymore). when i get out of the car after long trips, i feel like i am on a rocking boat, except that the ground is staying still. its so hard to stay positive when MAV has ruined practically every aspect of my life. i graduated valedictorian from my high school and with high distinction from college, and to not be able to work is just horrible for me (it also makes me even more nervous about the stupifying aspects of topamax). i have become an emotional rollercoaster. once a generally happy girl, i am now so depressed and anxious, and panic attacks are a frequent occurence. physically, my body has deteriorated from my now almost entirely reclusive existence. i’m not sure if anyone else has experienced this, but when my vertigo is bad, it hurts me throughout my entire body, and i feel so sore. the last really good thing i have left is my boyfriend, who has been so supporting and strong for me (i am living with him now), although it certainly gets to him sometimes too.

over the past few months, the only thing i had found to somewhat work for me was valium. it was definitely not a miracle drug, but it usually calmed me down enough to survive a college class or a test. i dont think it is something i can get a full day through on, though. i was prescribed topamax back in November, but after reading up on all the horrifying side effects i refused to try it for months. finally, last night, i made myself take 25mg before bed (and immediately panicked afterward). today i feel ok, not as bad as i thought i would. my body feels kind of numb, a bit tingly, i dont really have an appetite, my head feels like it has a cloud in it, and overall i feel like i do when i have a bad cold. its hard to tell if it is really working yet. i honestly do not know if i will take it again tonight.

again, i would love to hear any feedback. if there is one thing i know about MAV, it is that we all need to stick together.

Hey there-- I can relate having dealt with the same conglomeration of symptoms in my last semester of college. It took me nearly a year to get a diagnosis of MAV and I am just now getting back to very part-time work.

I gave Topamax a try for almost 3 months but it didn’t work for me and made me more tired than the vertigo alone. But, my father has also been diagnosed with MAV and Topamax has worked wonderfully for him-- try not to let the list of side effects scare you away. But if it doesn’t work there are tons of preventative options. I’m currently taking 50mg of nortriptyline daily and it seems to be having some effect (I’m still working on getting my dose a bit higher).

A lot of this is, unfortunately, hit or miss. But if your not getting any relief from Topamax, demand other options from your doctor, even if he hasn’t used them for MAV in the past (seems that doctors tend to have a short list of drugs that they prescribe on a regular basis–doesn’t mean they will be the most effective for you.) Verapamil seems to be very effective for some–check out some of the posted articles on the forum for more drug info.
-F

Dr Hain is very very good and is certainly a good person to have around trying to help you out of this.

I hope you get some relief soon - if Topamax doesn’t work there are many other options.