NEW--- please help. MAV?

Hello,

Im new to this website, and very overwhelmed with all the information. Here is my situation, I will try and keep it short.

I started getting headaches late June, they became constant July 15th (all this year) I would lie down, or recline and the headache would
100% go away, ALWAYS. I went to several doc’s and then a neurosurgeon, and I was told I have a bulging disk in my neck that is causing muscle spasms,
to go up my neck and cause the headache. I had previous disk surgery on a different disk with great success and trust him. I tried alternatives to surgery,
then ended up having surgery, woke up and for 9 days NO headache. Back up a little…

End of August I woke up spinning horribly. Couldn’t turn my head any direction not even a little bit, or the room, bed everything spin out of control. I had
this for almost 2 weeks, until I got an Epley done. PT said I had Bilateral BPPV. It worked, the spinning totally stopped. But when I got into bed, I felt yucky,
like I was going to spin, but I dont.

Moving forward… after surgery… after that 9 days, I got vertigo back a little bit. Didn’t stay around. But made me feel dizzy and yucky during the day.

I went to an otologist and he said I have MAV. Put me on Topamax and a low sodium diet. I took the Topamax for 3 weeks 25 mg. During that time I got vertigo again, and went and got the epley and again, went away.But this time the dizziness during the day is much worse. I went back to the doc and he wouldn’t increase the topamax or anything. Just said its a process wait it out.
I got another opinion. The 2nd Oto said he agrees with MAV but get off the low sodium diet. He also said that 25 mg of Topamax for 3 weeks is useless. Told me to stop and take Propranolol. So I stopped on November 7th. Felt better the next day and a half, then got a pounding chest, tight throat and headache. Which was a different headache that I had for like 90+days straight. It went on for about 4-5 days. Dont have anymore of that. Im to scared about talking Propranolol or Effexor which are his 2 choices.
I decided on 1 more opinion, as I just dont believe I have this diagnosis. I feel like they are confusing my headache associated with my neck, and putting it in the mix of symptoms. So the 3rd opionion ENT said. You have Chronic Subjective Dizziness. Because You had a headache for so long, and then got BPPV that every second of the day you are scared that the vertigo and headache are going to appear. The ENT said, you are waiting for the other shoe to drop 24/7
and this is creating a lot of anxiety that is excuberating your Dizziness. Told me no meds, try and relax.
So true, I am. I walk around like Im on egg shells, everytime I feel a pain in my head I freak out.

So is it MAV or CSD?
It seems like everyones story on here is worse than mine, so Im confused. Im dizzy in a sense. Its hard to focus and read on the computer. My eyes/vision just seems off, I cannot describe it. I feel as if Im moving, even when my eyes are closed. But my balance is fine.

Dr Hains website says Effexor is good for CSD and well its good for MAV to, so all my dx would be covered. But Im soooo sensitive with meds, Im afraid to try it.
I rather try Nortriptyline, but they dont like that. The docs.

Also before this happened I had major surgery last year Oct 2010, and right before that a small car accident, and right before that my dad passed away unexpectedly and then a few months before that my uncle. I just got back to work, and 3 months later this all started, I was doing fine until after surgery when the headache came back. So I’m a little depressed and totally have anxiety.

Oh and Kloponin- OUT of the question, brings on my vertigo. I hate that stuff.

Thoughts??

Thank you all!!!
Kristina

ps… I tried to make it short

Hi Kristina! I’m similar to you in that most people seem much worse than I. My “episode” came last February (looong story-I think you can read my story by clicking on my name!?). Long story short… It’s like the perfect storm- I had major surgery 3 months prior, severe hormone imbalance, switched antidepressants, took 2 different vacations/flying, an overwhelming amount of stress months before, etc, etc. I was in bad shape (bed ridden) for weeks. Then took me months to improve. I went through lots of tests/MRI, 3 Epley manouver treatments. Am currently on Zoloft. Was rx’d Xanex, for the panic attacks I began to have, haven’t taken it for months tho. I feel so much better than I did, but have never “fully” recovered. I, too, still have a weird sensation “aura” when I lay down on my back or when I look at the computer for too long or close or when I read while looking down-that’s usually the worst. I’ve had a couple medical prof’s tell me “MAV” basically!? All I know is I don’t feel like I did & that’s all I care about right now. I really don’t know if many prof’s know much about all of this!? My point is-be an advocate for yourself. Patience and tenacity for answers will pay off. I’m surprised no one else responded to your post yet. Seems like I have learned more here than anywhere. The more I see other people having/had similar symptems as I, the better I feel. I have read/investigated/educated all of this soo much (because it scared the crap out me & i needed answers) and the MAV symptems/info seems to be what i fall into best-less severe though. I guess this is my new “normal”. Which is fine-it could be so much worse. I hope you improve and get the answers you ate looking for. Your symptems are like mine & I don’t have disc issues, so I would lean towards you having MAV too!?
Keep me posted on your progress and any new answers you get.
Take care, Heather

Sorry Kristina, I missed your message when you initially posted it. I hope you are still around to read replies.

The problem here (and with many others) is that symptoms overlap with several conditions. MAV is essentially a diagnosis by exclusion, and there is no blood test or anything that can be done to diagnose it with 100% certainty, so it’s always going to be a bit of a grey area. Also, as you seemed to benefit from an Epley manoeuvre then that would suggest you had BPPV. However, that doesn’t mean you don’t have MAV as well, as several of us on here (me included) started with either BPPV or VN as a kind of ‘big bang’ event and then it started off a chronic condition (MAV).

I don’t know what to say, except that surely there is no harm in you treating it as MAV and trying to a) identify migraine triggers to see if you should modify your lifestyle or diet, and b) why not try a migraine preventative medication, like amitripyline or noritriptyline, as this is a migraine preventative but also an anti-depressant. Not sure what part of the world you are from, but I’m in the UK and I stopped bothering to see my consultant (was waiting too long between appointments) and ended up pretty much managing my own medication through my GP instead.

Thank you both for replying.
Its just confusing because I dont have headaches, I mean I did, but after surgery it went away and then came back. Neurosurgeon said its normal and soon it should go away. Gave me a medrol dosepak ( steriods ) and the next day Gone. So that is why im frustrated because the doctors keep putting the headache in with my symptoms. When it was coming from my disc afterall…
Im so sensitive with med’s I just am scared of trying them. You know someone told me yesterday that a Vitamin B and Magnesium defiency (not together) can cause the exact same symtoms. But my doc doesn’t want me to get a blood test. He said insurance wont pay for it.
I was also told by one doc, No MAV its chronic dizziness from BPPV. I have celexa, just haven’t started it.
I can see how its anxiety related. I have had a bunch of stuff happen in 2 yrs. I will try the celexa first, if it doesn’t work then the ear docs that say mav want me to try effexor. Boy… scared of that one!

Heather,
I read your full post. My vertigo was on both sides, doc’s said that was abnormal. But I couldn’t turn on either side.
When I lay down at night, I feel yucky. I describe it like this. You know the sound of fingernails on a chalkboard, well turn that into a feeling and put
it in my head. That is how egh… yucky I feel!
Its weird though, i feel much better doing things, minute I get on computer, or laydown or sit down and lean back, I feel wavy.
When im in bed, i sometimes feel like im about to spin/vertigo but I dont, just have the feeling.
Wasn’t on a meds, when this came about. In July my only symptom was my headache. Felt great/gone when I layed down or sat in the recliner, 100% gone,
then I would stand up, and within seconds it was back. That is why i dont feel like its a migraine.
Maybe this whole thing turned into mav. I dont know. I to am so obsessed with finding answers. I have a journal to document myself daily.
And a list of websites/things I have found and a list of possible diagnoses that I found, that I went to doc’s and had checked out.
Im a freak about this. i CANT get off the internet. The doc that said I have Chronic Subjective Dizziness, that came from my BPPV and excuberated by anxiety, told me get out of town, away from doc’s and the computer, RELAX! So I did, and for those 3 days I was 70% better, and for the following 4 days after. Hmmm… :slight_smile: