How can they tell if it's migraine or something else?
Posted , 6 users are following.
I've had all the tests done. I was told by neurotologist that I have Menieres but was told by a PT that I have severe horizontal BPPV.
I really really think I also have migraines. I don't always have pain but I do have everything else. I have the extreme sensitivity to light and sound. My eyes water all the time, even during sleep. My vision is always blurred (usually one eye worse than the other). Flashes of lights in my eyes (told they are ocular migraines by opthalmologist). And I have the dizziness & off balance. Hard to walk in stores, doc offices, stare at patterns or anything.
I get sharp pains in my head and behind my eye (was told occipital neuralgia). But behind my eyes ache a lot. My forehead/eyebrows ache a lot.
I asked the neurotologist if he thought migraines and he said no but I'm begging to differ. I was just at the doctor and she looked in my ears and said there wasn't any fluid.
I'm sick of feeling like this!! And I'm sick of going to docs and them not listening to me! Does this sound like vestibular migraine and if so, how do I get the doc to listen???
0 likes, 21 replies
nicole75069 Hayhue
Posted
Could Be vestibular migraine. It's strange to me that the neurologist doesn't think it's migraine, sure sounds like it to me. They're not treating you for the headaches at all?? I would start with a headache log, try to see if you can find what is triggering your headache/migraine. If you can minimize migraine, it will probably help your symptoms. Hang in there
Hayhue nicole75069
Posted
I think they won't treat me for it because I have more symptoms than headaches. But I've never in my life had ocular migraines (the flashes of light) until I started having all these other symptoms. Just doesn't make sense to me that my eyes can have migraines but that doesn't mean anything? Sorry to vent lol thank you!
Waffalobill Hayhue
Posted
My problem is about the same. Been to the docs 2 times a week at least for 2 and a half months. ENT says members. Neurologist says bppv. He says I should see a neurotol DG oing. ogist but closest one is hundreds of miles away. Can't afford to fly around the country, stay in motels etc to be told keep doing what your doing there's no cure.
Hayhue Waffalobill
Posted
Awe I'm sorry. I know it's rough. I traveled an hour and a half for mine and spent the entire day there. It took 12 hours all together. They can be hard to come by! Where are you located?
Waffalobill Hayhue
Posted
Hayhue Waffalobill
Posted
Ohhhh I see. I'm in Pennsylvania so I traveled to Pittsburgh for mine.
I'm surprised there are no others around you!
anne05147 Hayhue
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Hayhue anne05147
Posted
How did your eyes feel with your silent migraines? If you don't mind me asking.
I see my neuro Thursday and I'm going to ask her about it.
Thank you!
anne05147 Hayhue
Posted
My whole vision felt wonky, blurred, out of focus, affected by bright lights, as if I wasn't quite in the room but detached from my surroundings, with things moving past me quickly or unable to move my eyes fast enough as it made me feel dizzy. Was staggering around as though drunk and couldn't walk in a straight line.
Hayhue anne05147
Posted
Yes! That is EXACTLY how I feel! I feel as if things aren't real and that my eyes are "bugging out", as I like to call it. And if I close my eyes, I feel so much better. I have to lay in the dark with my eyes closed and they feel almost normal again.
anne05147 Hayhue
Posted
I now take Nortriptyline 10 mgs with really good effect over past 2 years, but consultant now wants me to gradually come off it, as he says my brain should have healed from the damage done by the silent migraines, I still have odd 'off' days but nothing as bad as it use to be, at one point I thought i would never be able to do anything as every aspect of your life is compromised with a balance disorder.
DizzyLizzy68 Hayhue
Posted
Tried to post this earlier, but appears to have disappeared.
Things I've learned from going to 2 neurologists, 1 one ENT, and a neurotologist at Stanford.
1. If you don't have the classic presentation of menieres (episodes of low frequency hearing loss that become more permanent over time), it can be hard to diagnose, and may take time to be sure of diagnosis. Various tests, along with a specific clinical picture point one to a menieres diagnosis.
2. Some drs believe menieres is on the migraine spectrum, that it is a more rare manifestation of migraine disease. This is not a widely held belief, but has generated interest.
3. What is widely agreed upon is that those with diagnosed menieres disease have a very high incidence of migraine as well. It's around 50% vs a much, much smaller number in the general public.
4. Some specific migraine preventative drugs, like verapamil, have been found by some drs to be helpful in menieres. It is not known if this is due to their action as a migraine preventative, or some other action.
5. If you go to several drs or specialists, you are likely to get different diagnoses. Been there, done that.
6. You do not have to have a headache to have migraine disease. Most people with a migraine variant presentation (such as vestibular and hemiplegic migraine ) have either a personal or family history of "normal" migraine. It is not unheard-of for dizziness due to migraine to appear out of the blue. I've had many drs say the most difficult task was getting patients to accept migraine as the diagnosis without the headache.
So all that said, what is the harm in trying a migraine preventative? It wouldn't mean you DON'T have menieres, but could possibly help some of your symptoms. It's a pretty low risk trial, especially compared to menieres treatments like ear injections. If you haven't seen a neurologist, try to find a recommended one to consult with for another opinion. That seems like a reasonable course of action to me.
Hayhue DizzyLizzy68
Posted
A neurotologist is the one that diagnosed me with atypical menieres so at my request for VRT, I was sent to the physical therapist. He is the one that diagnosed me with severe horizontal BPPV because I do not have hearing loss
Hayhue DizzyLizzy68
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I wasn't finished typing. These new ads on this page make it hard to type.
Anyway, I do not have hearing loss at all. When the PT did his maneuver for BPPV, I felt like crap for a few days and then I felt better than I have in over a year. That lasted a week and a half and then it came back. I did the maneuver again and it did not work. Unless the maneuver did work and I'm having migraines that are causing my issues.
So I'm not sure anymore if I have migraines with BPPV or migraines with Menieres but even when I feel "ok", my eyes still feel messed up big time.
I would love to try migraine prevention medicine but the hard part is getting my neurologist to believe I'm having them enough to prescribe me medicine.
I've seen 3 neurologists, an ENT (who was a quack), and a renowned neurotologist. It's not a question of which doctor is correct anymore, it's a question of why am I still having symptoms?
I am not exaggerating when I say that it has ruined my life. I am only 29 and have been dealing with idiopathic vertigo since I was 17. I absolutely for the life of me cannot understand why, in 12 years, no one can STILL figure out what is wrong with me.
anne05147 DizzyLizzy68
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Agree that it is hard to believe you have 'silent migraines'. I initially lacked any confidence in the consultants diagnosis, but have to say he was correct. Since taking the medication i have improved by at least 80% from the visual vertigo and realised that chocolate and cheese are triggers.
DizzyLizzy68 anne05147
Posted
Anne, yes- I've found foods and hormones to be one of the biggest triggers. I cannot take any hormones, even low dose, bio identical. And I had to find my trigger foods and eliminate or reduce them. Even taking a migraine preventative.
DizzyLizzy68 Hayhue
Posted
Hayhue, it is somewhat surprising to me that no dr thought migraine, when it seems to be the diagnosis de jour. Dr in Chicago area states a higher rate of BPPV in migraine disease vs general population. Also more propensity for motion sickness.
I'm not sure where u live, but there are Web sites that deal with MAV, and dr recommendations. Maybe u need another look. And again, trialling a migraine preventative is low risk and easy test to see if that is at least part of the issue (does take 3 mos at correct dosages before calling it a failure ). Sometimes one has to get firm, and ask to try something.
anne05147 DizzyLizzy68
Posted
This problem also started around the time of menopause and the consultant said that was also probably involved with the trigger and i am also on hrt which i am trying to come off, but for the moment due to severe arthritis without it, it's difficult as i can't work with the pain of arthritis and the hrt keeps it dampened down. I'm trying to deal with one problem at a time but don't doubt it may also be a trigger.
Waffalobill DizzyLizzy68
Posted
Hayhue DizzyLizzy68
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Yeah I'm going to ask my neuro when I see her this Thursday.
Thanks for all your help! I'll let you know what she says