New, scared, confused - could I have MAV?

Hi, I’m Ruth from the UK. Really happy to find this board and hoping it will help to answer some of my questions and reassure me that I am normal! Right now, I am in the middle of a pretty bad dizzy attack and I am just so worried I am going mad or this may be something more sinister (brain tumour etc). I would really appreciate any tips, info, reassurance from any of you that have been through this.

I have been suffering from a variety of symptoms since Oct 2013 that come and go at different times. I find all this really hard to explain to my GP and often find I end up complaining mostly about one or two of the symptoms and forgetting to mention the others (forgetfulness and fogginess seems to be one of the symptoms…)

I am female, aged 40 with two young children. I have always suffered from headaches, and there is a history of classic migraine in my family (mother and brother). Whilst pregnant with my 2nd child (4 years ago) I first started experiencing classic migraine with aura (the aura would last for 20 mins and comprise flashing, partial loss of vision and zigzag lines) followed by a dull headache that was unpleasant but not incapacitating, followed by feeling utterly wiped out. Following pregnancy these headaches happened around once a month and seemed hormonally linked. These migraines since stopped and I have not had one of these types of migraines for about 2 years. Then, in Oct 2013, I started suffering with periods of dizziness (not vertigo, just v lightheaded and ‘out of it’), accompanied by feeling extremely tired and brain fog. I went to the doc who diagnosed blocked Eustachian tubes and gave me various nasal sprays etc that I used for weeks on end without any change. Since then, I saw a well-respected neuro-otologist who ran a ton of different tests to see if this was an inner ear problem. The tests mostly came back clear, but with a slight asymmetry between right and left - esp noted in the ENG test. She concluded Vestibular Neuritis with a possible migraine component. I have started Vestibular Rehab Therapy, but not really noticing any improvement yet (6 weeks) - though the exercises have gotten easier. My symptoms are as follows:

  • Extreme fatigue - almost constant.
  • Light sensitivity - 60-70% of the time
  • Tinnitus - there most of the time, but much greater during a dizzy day
  • Heavy headed - and feeling of pressure esp over bridge of nose and sometimes in ears
  • Short term memory significantly worse and brain fog 40-50% of the time
  • Light headed and dizzy (not spinning), ‘out of it’, dreamlike etc about 50% of the time - comes and goes quite dramatically - usually worse in the morning after an hour, then ‘lifts’ in the afternoon - better in the evening
  • Dull, mild headache there a lot of the time, with bad headache days esp around period and ovulation. (4-5 per month on avg) Worse when moving around and not relieved by painkillers.
  • Jumpy eyes - find in hard to focus on an object without it ‘jumping’ (though my Nystamography was normal)
  • Nausea - not linked to headache

All these symptoms are intermittent, but it does feel like one or more are there most of the time - esp the fatigue - and they seem to be increasing in intensity and frequency. There doesn’t seem to be any particular pattern or trigger, though I am often better in the evening, worst in the morning. Nights are fine, though sleep doesn’t feel like it is very deep for very long and is often broken.

So my questions are:

  1. Does this sound like MAV? Or something else - something more sinister? I am a panicking Mum of 2 small boys who need me!
    2 Are inner ear complaints linked to migraine - ie. can one trigger the other? Could I have had an inner ear infection that triggered the migraines?
  2. Is VRT helpful for MAV? (I am doing the exercises anyway in case this is just an inner ear thing)
  3. What should be my next steps? The GP didn’t seem to think an MRI would be necessary and has given me a triptan to try, but the list of poss side effects are putting me off even trying it.
  4. Could this all be hormonal - i.e… perimenopause, excess oestrogen etc? Would hormone testing be useful?
  5. Are triptans thought to be helpful in treating MAV or only headaches? Should I be trying prophylactic medication at this stage? Keen to go the natural route if at all possible.

I am sorry for the long post. I am tired, scared and fed up with feeling like this - I want the old ‘me’ back and need to be able to move forward.

Thank you again if you have managed to get to the end of this post - and thanks in advance for any advice you may have….

Hiya Ruth,
This does sound like chronic migraine. I strated suffering with choronic migraine last year. I get pressure over the bridge of my nose, around my ears/base of my head and sometimes up into my forehead. I also suffered with bouts of tinnitus or hearing that would fade out or sound loud. Although this has become less and less for me. That light headed feeling you descirbed as though your are ‘out of it’ I described that as a feeling of being drunk if it’s the same feeling. I also had difficulty co-ordinating myself as in I couldn’t seem to have the energy or mental capacity to get myself in order and plan tasks ahead or follow conversations it was like my brain just couldn’t do it. I felt as though I just wanted to lie down and stare at nothing! It does sound like you have MAv/chronic migraine but I would definetely ask the GP to refer you to a neurologist just for your own peace of mind and plus the fact GP’s aren’t that good and only have a very vague general overview of everything (A jack of all trades who is master of none).
Often migraine symptoms are mixed up with inner ear probelms. I was dizzy for about 4 months but this lessened eventually and I am no longer dizzy. I think migraine can just start out for no reasons whatsover but it is linked to hormones also.
Also I think a lot people have tried VRT, I tried it not sure if it helped or not but made me feel as though I was doing something useful at least to help myself. I don’t think it will do you any harm to keep trying it. I found going on a small trampoline quite helpful in trying to train myself not to be so dizzy.
A good place to start for more info is some of the talks and resources in the audio and presentations on this MAv forum. I would highly recommend Dr. Silvers stuff, his explanations are excellent. I don’t think triptans are that helpful once you have a chronic form of migraine, I tried them once just to see if it made any difference and it didn’t. Just made my mouth taste like rubbery poison :(. Ive tried two preventers also and they haven’t been helpful to me but it’s not to say it will be the same for you. The best thing I did that really helped me and it would be the thing I would recommend the most would be to cut caffeine out of your diet e.g. choc, tea, coffee, coke, energy drinks etc. This was the thing that really helped me the most! Also a lot of people who have got migraine ( not everyone) suffer from restless legs or jumpiness (limbs/whole body) when you are trying to sleep . If so caffeine free helps this a lot. I hope this helps and hope you get sorted and feel better soon.

Julia - thanks so much for taking the time to reply - I really appreciate it. It’s so good to find a forum with others in the same boat. I will definitely have a good look through the materials on the site - it feels like the start of a bit of a journey to find the possible ‘triggers’ - and I have always wondered about caffeine. I will certainly give it a go cutting it out. I was thinking about trying an elimination diet - any idea how long it should take to see if a certain food/drink is a trigger? e.g… if I stop caffeine for a week but still get a migraine at the end of it, does that mean caffeine is not my trigger? Or is it possible to have several triggers?

Hi Ruth,
Have you been evaluated for sleep apnea? It’s not uncommon for folks with OSA to complain of morning headaches.