Hi everybody. Was just wondering if anybody in the UK can give me any advice on a private centre in London that deals with MAV?
Iām so sick of being told by my gps that I have anxiety when I know itās migraine related. I have suffered aura migraines now for 15 years.
December 2013 I woke up feeling fine but by lunch time my whole world had changed. I felt dizzy, drunk, unreal feelings, heavy head, sick, unable to concentrate, very blurry vision and unable to focus on things like I could see them but my brain didnāt process what I was looking at. Lights were far too bright. Everything looked different. I wasnāt able to watch TV as it made me feel dizzy as the screen was moving too quick. I also had headaches.I felt like this 80% of the time. I would have moments of feeling normal and would think wow, Iām back but would end up back to feeling so ill again. In September 14 I saw a migraine specialist for my migraines with aura but didnāt mention any of my other symptoms as I thought it was anxiety (hadnāt heard of MAV) told her I had weird visuals. She told me to take beta blockers, asperin, taught me about sleep routine and cutting out msg, chocolate, cheese and nuts. After this I got 80% better. I still had the drunk feeling in the super markets etc but was feeling so much better. Ironing striped shirts on my spotty iron board and other visuals still made my head funny but I coped UNTIL a couple of weeks ago after a few months on stress Iām back to full on dizzy, drunk, major headache mode again.
Do you think this is MAV? Iām finding it all so much to cope with now. Iām trying to get on with my life but I feel so unsteady and awful again. I told my doc I thought it was mav but she said no as I donāt have vertigo.
There are two top experts in England (I think in London).:
Dr. Surenthiran (look up his name and you will find the clinic/hospitalās name) and Dr. Nicholas Silver.
I donāt have vertigo either - instead, have the drunk feeling, esp. under fluorescent lights.
Yes it sounds like migraine. Sums up my symptoms! It will improve when you get the right help.
Iām in Kent and see Dr Surenthiren. I was referred to him at the balance centre at the medway maritime hospital by my gp -but I know he does a private clinic in Tunbridge Wells and Iām pretty sure in London too.
I only had a six week wait to see him (although I was very tempted to speed it up and go private during that time!) Google him and youāll see where he runs private clinics.
In the meantime are you following the diet and lifestyle recommendations?
I think I will have to go private as my doc canāt see past anxiety. She wonāt do anymore for me untill I have started citalopram. Do you have any experience with citalopram?
This is not a widely understood thing. My GP didnāt know what was wrong with me, my husband even had me at a&e one day and the doctors there didnāt have a clue. Surenthiren diagnosed this within minutes of seeing him. You really do need to see him. For once I wasnāt trying to explain all those weird symptoms to someone, he was running them by me instead. It was like a weight was lifted.
Iām sorry, I havenāt heard of that drug. Is it specifically for anxiety? Before I saw the specialist my gp tried me on stemitel (I think thatās what itās called!) for the dizziness but it didnāt do anything. Anxiety does come hand in hand with this illness though so if you can keep that in check it could help a bit. Surenthiren has me on nortriptyline now which has helped so much.
Itās such a shame she wonāt refer you. It does my head in how little doctors seem to know about this. Itās actually such a common cause of vertigo. Can you not insist or try another gp? Or, my GP said itās possible to have an initial private consultation, but then explain youād like to go forward and have any treatment on the nhs.
All that information was so helpful, thank you very much. I wish I would of know about all of this two and a half years ago when all this started. I have 2 young children to look after and on some days feel I should be in hospital not looking after children. I will see my gp again next week and arrange a private consultation with the doc you suggested as I live very near Kent. Hopefully after will be taken on as NHS.
I know what you mean about the anxiety and keeping it under control. I have learned how to do that now. Citalopram is a SSRI, as my GP wants to treat me only for anxiety that is all Iām offered.
Itās great you have help now. What improvements have you seen with the medication you are on?
I have three little ones too so I completely understand how hard it is. All the noise and chaos certainly doesnāt help this at all! Sleep deprivation into the bargain. Itās a killer!
My symptoms were all very similar to those you describe. I found noise unbearable (earplugs are a must!), my vision was strange - unfocused and kind of ājumpyā like old film, if you know what I mean. I didnāt have headaches but head pressure. The fatigue was awful. The nortriptyline really eased up all of these symptoms. Some days I can feel pretty normal, just with some visual disturbance remaining. I keep getting colds and things which set things back again. I havenāt had a good week this week with it. I hope when I shake off any bugs the migraine will also improve again.
Nortriptyline is also an antidepressant. Itās not an SSRI, itās a tricyclit one. I think some doctors do use those sometimes though, so maybe it could help- but I thatās a big āI thinkā! There are people here far more knowledgeable than me on the drugs used to treat this. Antidepressants and epilepsy drugs seem to be the main ones.
With your history of migraine Iām surprised your doctor is still missing this. Iād never had a āmigraineā so was surprised with my diagnosis, but sounds like this is your problem for sure. Have you given up caffeine too? Thatās the main one for me I think. Sadly red wine is a no no too.
Try magnesium glycinate at 400mg at bedtime. Itās doing amazing things for me. xx
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Yep I take the magnesium and loads of vit B2 amongst other things. Iām interested to hear how the CO Q10 works out. Itās pretty pricey and I spend enough on supplements as it is so havenāt tried it yet. It would be good to hear if you think itās worth it.
It must be worth it then. I just sent you another message to the other thread - re: magnesium glycinate. I feel really good. This randomly happened when a guy in Whole Foods said that he swore by both for his migraines. Liv
Im not sure if these are classed as triggers but things that make me feel dizzy and drunk are emotional upset, fear and stress. Visual things like when it becomes dusk and if its a really over cast day. Watching things on TV that are filmed using a hand held camera and other camera techniques like used in American horror story. Some shops are awful, the top floor in Asda living is unbearable and bright. Is this normal for MAV?
Iām not sure about food triggers as I eat healthy home made food a lot, no msg, cheese, chocolate, coffee or nuts. Alcohol is a definite no now unfortunately .
Do the suppliments work well? I would desperately like a third child but know this isnāt possible feeling like this. I couldnāt cope with sleep deprivation and feeling so ill. My kids are 2 and 6 but are very good sleepers now.
Be good to have a list of suppliments that work well.
Yes absolutely those are triggers. Supermarkets are bad for most people with the lighting and displays and things. Brighter daylight actually does it for me but when I leave the house the natural daylight bothers me a bit whatever itās like. Stress is the biggy. Thatās the main thing surenthiran wants me to avoid. Heās says not to even obsess about the diet as then that becomes a stress in itself. Iāve downloaded an app called headspace which is great guided meditation. I do a bit of yoga too and Iāve learned to let a lot of things go. My house canāt be spotless etc!
400 mg vitamin b2 and 400 mg of magnesium are proven to help with migraines. There are other things people recommend too but those ones the docs will agree on. The magnesium you get readily in shops is magnesium oxide which isnāt very bioavailable so get msgnesium glycinate. Not easy to get in health shops, I can send you a link.
This is an excellent webpage: http://www.drweil.com/drw/u/ART03106/Migraine-Headaches.html
I like Dr. Weil in general. Iām doing tons better just with magnesium glycinate (400mg), CoQ10 (400mg) and B2 (200mg) per day. I may up the B2 to see if I get even better results. This has been a godsend. Dr Weil is a very good doctor! I am not on any other meds and I have eaten trigger foods without major problems now that Iām supplementing with these. My skin seems a bit more acne prone since starting the vitamins, but I donāt really care. It might also be dairy Iām eating. Not sure. xx
They are super helpful. I feel really improved on the magnesium glycinate and coq10. That said, whenever I drink espresso (or anything high in salycitates or tyramine) I get more symptoms. Itās super weird. I kind of give up on trying to figure it out but I can live my life with these natural supplements pretty well. Iām about 70% normal without the trigger foodsā¦ as much as I enjoy coffee I may try to up the dose of mag glycinate to 800mg for a couple weeks to see if that does the trick. It definitely has released a ton of head pressure and odd symptoms with light sensitivityā¦ xx
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I may try to up the dose of mag glycinate to 800mg for a couple weeks to see if that does the trick. It definitely has released a ton of head pressure and odd symptoms with light sensitivityā¦ xx