Haven't had a diagnosis!

As with many of you, this is my first time participating in a forum like this. I have had migraines since I was 19-20 yrs old. I am now 47. My migraines were always preceded by a aura, and if I took tylenol and shut my eyes, I wouldn’t get the headache. If I couldn’t do that within about 45 minutes I would have a classic migraine. I would only get these episodes maybe twice a year some years none at all. Since last January (2006) my mother was in the hospital and my sister and I took turns staying with her. After a week she was released and I started having dizziness. I went to the GP but nothing was done. Must have had a bug that went away. Then I had a bout of vertigo. It lasted about 30 minutes, I got sweaty and flushed, threw up and the room spun. I went to another doctor and got a referral to an ENT. The ENT thought I was having “migraine equivalents”. He did a CT scan of my sinuses because I said there was pressure in them, but that was clear. He referred me to a neurologist who did a MRI which came back with results which could be indictative of high blood pressure, diabetes or migraine. She gave me a RX for Imitrex but told me only to take it when I had the headache. Well the dizziness comes without a headache so I rarely took it. As 2006 went on I seemed to get better and was pretty normal for the rest of the year. Then in 2007, same time of year late winter early spring, I started having the dizziness and more episodes of vertigo. I have identified my triggers for the dizziness as: caffeine, MSG and whatever is in red wine. Last month woke up with vertigo that lasted three days. Went back to the GP he sent me to an ENT. I had all the audiological testing and an ENG (where you follow lights and they put water in your ear, all while hooked up to electrodes). Well all that was normal. I had allergy testing last week (since it seems worse in the spring) but I was allergic to nothing! The ENT said I have non-allergic rhinitis and would improve when the weather dried out! Well I don’t know how many of you have watched the weather for the south central US, but Oklahoma has broken records for number of days rained and rainfall amounts! Anyway, I feel 95% better than I did 4 weeks ago, but I still have an imbalance problem. If I move too quickly or look around too much while walking, etc. I am really tired of Drs., like many of you. Do any of you have suggestions? I was wonding if I took the Imitrex more often if it would help. I get pressure in my head but not the full blown head ache. Any thoughts? Beth

Hi Beth

The vertigo and migraine is mostly diagnosed by ‘association’ it seems - it leaves me feeling confused and frustrated - but what is clear is that if you have vertigo and migraines it seems likely it is associated. Even if there were a clear diagnosis I can’t see that there is any one treatment that can avert MAV 100% - it seems instead combinations help manage, treat and minimise it.

I was told to avoid caffeine by ENT - it was explained that it contributes to dehydration which makes vertigo worse. I think reducing caffeine did help but I have not cut it out altogether as I really enjoy 1-2 cups of coffee each day. The pressure in your head I recognise - it is like pressure between the ears and deep in the head. I always get that with a bad bout of vertigo. I take just standard painkillers to deal with this - I think I have found that stemetil for vertigo, Maxalt for migraine, painkillers for the ear pressure and rest are the best it gets for me. Resting seems to be the most crucial as I really think it helps lessen the symptoms and improves recovery times.

Mrs. G
Thanks for the response. I forgot to add that the ENT told me to take Lipo Flavonoid. It is a supplement, no RX needed, and it really seems to help with the dizziness. Evidently it is given to Meniere’s patients, but it helps with dizziness as well. I guess the scariest thing is not knowing when it will hit again. I have completely given up caffeine at this point. Being a southern girl I miss my ice tea most!! Beth

Mrs. G…

Like yourself i allow myself to drink about 1/2 cup of coffee (folgers)…nothing stronger. Also…i also have the tension/pressure deep in the head…but instead of having pressure between the ears i have the Tension mostly felt in my temples. Instead of Pain i get motion. I feel the throbbing like sensation inside my head…but never develops into a splitting headache. If i have a stressful day or if i skip a meal…i sometimes will get a run of the mill headache. I don’t get the severe vertigo like i use to…sometimes a mini-spin…but i have had this condition for 15 years and i believe the body helps to heal. If i didnot take the one tab of anti-anxiety medication (Xanex)…i sometimes wonder if the more serious Vertigo would return? Xanex helps to keep me more Stationary. Resting and getting 8 hours sleep is very important for me too.


Beth, both my daughter and I have migraine associated vertigo. If you read the eMedicine article posted on the home page, it describes how most of the vertigo occurs without headache. That really stumped the pediatric neurologists when my daughter was hospitalized for intractable migraine, but was having intractable vertigo with essentially no pain.

Not knowing when it will recur is the worse. I’ve also identified triggers: fatigue, illness, hormonal, barometric pressure changes, some dietary stuff–but a bad day is still a bad day.

My daughter, who is on notritriplyine as a preventive, will take a motrin when she wakes with the room spinning, and it helps considerably. She used to take imitrex, but it makes her sleepy, and she has to go to class.

My first otologist started me on klonopin, and my second has agreed to leave it in place, and I don’t do much for a bad day, except drink ginger tea/gingerale and go slow.

I found that most neurologists were clueless about migraine associated vertigo: although there was a talk about it at the recent American Headache Society meeting, but my ENT’s and otologist understood it.

The lipo flavinoid is interesting. I take migraine supplements: magnesium 400mg/day, riboflaviin 400mg/day, coQ10 150 mg/day and fish oil 1 gm/day. They’ve all shown improvement in migraine, but may take a few months to work.

I do agree with you that the uncertainity of when it may recur, along with the general lack of knowledge amongst physicians is hard to handle.

This thread is a really interesting one - Beth you mention the uncertainty of never knowing when the next bout of vertigo is going to come. I think it is that point which gives a lot of cause for anxiety and panic attacks in the early years of dealing with the illness, perhaps ongoing in the long term but to a lesser degree.

I am sure you will feel more confident about managing the vertigo in time, I think once you feel secure in the types of medication that you have available to treat it and they give some relief, you will worry a little less about getting the attacks.

But I know what you mean and it is difficult not to dread the next bout - I went from being agoraphobic as a result of the vertigo, to now getting out and about pretty much to most places - but if I am alone I often have that little anxiety producing thought ‘what if I get vertigo or a visual migraine while out’ - try not to listen to it as it can stop you doing things on the days that you are actually able to get out and about and enjoy life as you deserve to.

I think it helps to have an action plan of what you do if you do get vertigo at work, in the car, in the shops etc - for me the thought that I can get a cab home if I am really bad (I’d have to be bad as it would cost me a fortune in London! :slight_smile: helps, secondly I never go anywhere without stemetil, maxalt and pain killers - just in case! Sometimes a long handled umbrella is even useful for confidence when you are walking if you are recovering from a bad bout of spin and need something to help steady you. All those small things can give you more confidence and help reduce the worry about the next attack.

I wish you well - could you have your ice tea with decaff tea instead? Its such a shame that you are not able to have something that you clearly enjoy so much!

Dear Beth , here’s a very interesting article hope it helps