Please Help!

ALl of the neuro’s that I have seen are convinced that I have Migraine disease, but in the back of my head I just wonder…I have never had a migraine and only get a couple of headaches a week. I am not really sensitive to light and the only eye symptoms I have are my eyes almost always feel really heavy and tired and I tend to stare off into space A LOT and have a hard time focusing. SOmetimes I find it so uncomfortable to concentrate on when someone is speaking to me. My brain is just not working, i feel soo much brain fog and fatigue. I wake up in the morning and when I am sitting at the breakfast table my husband can see me actually swaying slightly back and forth. My symptoms are lightheadedness and a DRUNK , woozy , faint, extreme tired feeling that happens everyday and gets worse around my period, and when I do any type of exercise or exertion. I have gotten panic attacks sporadically( on planes, in meetings, when I am really nerves) starting 10 years ago and when this chronic dizziness started it has mad me panic more often because it isREALLY SCARY being dizzy all of the time. I want to try Topamax since I am having such a hard time taking an SSRI or Effexor. But I just want to make sure that these symptoms ARE migraine related and not JUST anxiety because then the Topamax would not do any good. Please if there is anyone who can help i would greatly appreciate it. Thank you so much!

My simple diagnosis…it absolutely sounds like migraine and you hit on every one of the issues that I feel.

That being said, you need full inner ear testing to rule out/in other ailments. You need to be seeing a neuro - otologist to go through the full diagnostic testing.

This will tell you if you have any inner ear damage , which would lead to a different diagnosis.

There is no simple test for migraine. It is somewhat of a disease that is diagnosed per exclusion of other issues.

Hope this helps, todd

Thanks Todd, I have had ALL of those test and the Neouro-otologist think its Migraine and the GP and the Psychiatrist thinks it is Anxiety related since i have such bad Space and Motion Discomfort. eg grocery stores, busy patterns, driving somtimes. Ahhhh what to believe???

“I have never had a migraine” - that’s what I thought too! And my mother would have told you the same thing. And she found herself, at the exact same age it hit me, having to crawl to get to the bathroom because she was so dizzy she couldn’t walk - our severe dizziness episodes hit us in perimenopause (when hormone levels rise and fall wildly), and we both had what we thought were “sinus” headaches all our lives.

My neurologist straighened me out - and further reading has convinced me (if there was any lingering doubt): MOST people misdiagnose their own headaches.

If people don’t curl up into fetal position and feel that they must go to into a darkened room when they get a headache, and if it’s not always throbbing and not always on only one side, well then it couldn’t possbily be a migraine headache, could it? Yes it COULD! I rarely become disabled by a headache, almost never go home from work because of mine - don’t get the headsplitting kind that some migraineurs suffer. I get sensitive to light sometimes, but I wouldn’t put sunglasses on indoors or anything like that. What’s most diagnostic in our case is the dizziness!

GP and psychiatrist, like many docs, are probably uninformed. I would trust the neurotologist. Mine sent me to a neurologist only because he doesn’t treat this himself. But Topamax has been great for me.

Joli,
Try the Topamax…once you don’t have all those debilitating symptoms, your anxietyi will no doubt improve. You can always take a low dose benzo to help, as many of us do. I haven’t had a headache in my life EVER, although I did start getting daily headaches once this dizziness/anxiety/depression stuff started…my stuff is highly visual too. The fact that I’ve responded to meds makes me realize it’s a brain chemistry issue…call it what you want…
Good luck and give it a go!
Kelley

I’m right there with you - that’s why i wish there was a definitive test for MaV!!! i guess i would have tried low dose topamax if it had been given to me - i sure didn’t like the Celexa i tried. i don’t have headaches either - not migraines - just pressure and sinus headaches but still beleive i can have migraine associated vertigo. I have bad anxiety now but i think i’ve maybe always had it so therapist is treating me for that - working through a book and learning some meditation and all - he’d like to see me off the valium but we’ll see what happens. valium is the only thing that gets me through some days and even then it’s very difficult. i have the light/sound sensitivity most of the time. I have allergies most of the time too.

I hope you figure out what you have and get some meds for it. I’m still at a standstill with mine. not sure what to do any more.

take care!!

chris

Chris - Forgive me if I’m repeating myself, but my neurologist was very clear about how common it is for people to misdiagnose their own migraine headaches and think that they’re “sinus” headaches instead. He asked me if I’d ever been diagnosed by a doctor with a sinus infection - yes, more than one, and I was miserable. My head was totally plugged up, and the pressure was horrible - THAT, he said, was a true sinus headache. Most of the time when people buy over the counter medication for what they THINK are sinus headaches, they are actually treating their own MIGRAINE headaches. My mother and I did that for decades. We were misinformed.

I do have allergies, and when I finally saw an allergist and started getting my allergies treated properly (I have to take a few different meds, and I take them year round), I stopped having sinus infections - but I kept having the “other” kind of headache, which I thought were just-not-totally-congested-but-still-“sinus”-headaches (this was pre-dizziness, and before seeing the neurologist who explained this to me).

In fact, I believe that most migraineurs who experience dizziness do NOT get skullcracker headaches, so according to the neurotologist who diagnosed me in the first place, we often have to be convinced that our dizziness is migraine related!

Hi Chris,

Gosh I feel for you right now - I can just about feel your confusion,frustration and uncertainty coming off my computer screen! You’re getting pushed from pillar to post with all your specialists. Surprise, surprise - your neuro says you have migraine and your psych says you have anxiety. Sound like these docs have got their specialist filters on or what??

You’ve been in this twilight zone of diagnosis for a few months now - at some point you will have to accept a diagnosis from either your neuro or you psych and move forward. In terms of meds, try not to get too fixated on what may or may not work. You won’t know either way unless you try. Sadly, there is no wonder drug or silver bullet for migraine control. You can do the lifestyle modifications (right now) regardless of what your diagnosis is. And regardless, you will be healthier and happier for it.

Chris you also seem to still be struggling with the diagnosis of migraine because of the headache issue which I remember you were since you first arrived here a few months ago. Try not to get stuck on that. Headache is NOT migraine and migraine is not headache. It’s also worth remembering that anxiety is one of the symptoms of migraine. I also get the sense that this no-man’s land of diagnosis is making you even more anxious. That’s not helpful. You need to move forward.

Personally, the symptoms you describe are very familiar to me - as a migraineur. I’m not sure if that will help you or just confuse you even more, sorry. :?

And just as a final thought there is no such thing as “just” anxiety, as though it is under anyone’s concious control or “all in their head”. Harrumph.

Vic

Hi Joliview –

• All of the neuro’s that I have seen are convinced that I have Migraine disease.
• I have never had a migraine and only get a couple of headaches a week.
• My eyes almost always feel really heavy and tired and I tend to stare off into space A LOT and have a hard time focusing.
• Sometimes I find it so uncomfortable to concentrate on when someone is speaking to me. My brain is just not working,
• I feel soo much brain fog and fatigue.
• I wake up in the morning and when I am sitting at the breakfast table my husband can see me actually swaying slightly back and forth.
• My symptoms are lightheadedness and a DRUNK, woozy, faint, extreme tired feeling that happens everyday and gets worse around my period, and when I do any type of exercise or exertion.
• I have gotten panic attacks sporadically (on planes, in meetings, when I am really nerves)
• Starting 10 years ago and when this chronic dizziness started it has mad me panic more often because it is REALLY SCARY being dizzy all of the time.

The above symptoms absolutely scream migraine to me. Pretty much crystal clear with all of the hallmarks of MAV. You said above that you do get weekly headaches but they are not “migraine” headaches. Migraine headaches can be anything from low-level tension-type headaches that you can knock out with a painkiller all the way up to the ones that you’d swear would drop large wild African game.

Have a crack at the Topamax Joli. If it works for you, you’ll probably see the whole thing vanish or be greatly diminished.

Let us know how you go.

Scott 8)

Thank you so much Victoria and SCOTT! You have honestly made me feel so much better and not so Isolated in this condition. I guess I do get caught up in trying to figure out exactly WHAT I have, and I need to accept that I HAVE migraine !! The advice you guys give is really comforting!!! Scott you said that my symptoms SCREAM MAV so I am going to believe you, you would know!!! ANd VIC, you are absolutly right I NEED to move on and just start trying different meds and stop trying to figure out what THE BEST one would be. It is nice to know that there is somwhere you can go (this forum) if you need a little support. Thanks again and I will let you all know if the Topa works out or not! :smiley:

Hey Joli,

— Begin quote from ____

I guess I do get caught up in trying to figure out exactly WHAT I have …

— End quote

The reality is for this junk is that it is ultimately a diagnosis of exclusion. All the neuros say it’s migraine, to us it appears to be a dead ringer for migraine but the the only way to be as 100% certain as one can be is to follow the migraine survival road to recovery – trigger avoidance, lifestyle modifications and if this doesn’t sort things out adequately, then we have to enter the world of migraine meds. Some hit the jackpot immediately while others have to go through a whole bunch of meds or find a combo to find the right fit.

You’re doing all the right things Joli. :smiley:

sounds soooo much like me - maybe someday i could try topamax or somethign other than an antidepressant!!! I can’t say I"m liking the way i feel these days that’s for sure. I had a good day on Friday and now it’s back to dizziness again. it just comes and goes as it may. I’ve pretty much been on the migraine diet except for a bit of cheating but gosh it’s geting worse again now that it’s pollen season :frowning:

winter weather coming this week so maybe it’ll help - we haven’t had moisture in 30 days or more.

I hope all of you are feeling good. Me, i’m just frustrated - just when i think i’m getting better it comes back again. I’m not fond of neurologists either so that’s a problem. environment is my biggest trigger i believe after 30 years of this crap. Gotta love it - can’t control it. :frowning:

chris

Thanks you guys!!! I really appreciate the word of encouragement!! :smiley: