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MAV or anxiety?

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?

I’m so sick of being told by my gps that I have anxiety when I know it’s 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 didn’t process what I was looking at. Lights were far too bright. Everything looked different. I wasn’t 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, I’m 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 didn’t mention any of my other symptoms as I thought it was anxiety (hadn’t 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 I’m back to full on dizzy, drunk, major headache mode again.

Do you think this is MAV? I’m finding it all so much to cope with now. I’m 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 don’t have vertigo.

It sounds like MAV to me.

There are two top experts in England (I think in London).:
Dr. Surenthiran (look up his name and you will find the clinic/hospital’s name) and Dr. Nicholas Silver.

I don’t have vertigo either - instead, have the drunk feeling, esp. under fluorescent lights.

See them and you’ll be in the best hands.

Best wishes,

Asli

Thank you so much. Are you receiving any treatment that works at the moment?

You are welcome.

No, not really. I need to try some new meds.

Yes it sounds like migraine. Sums up my symptoms! It will improve when you get the right help.

I’m 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 I’m 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 you’ll see where he runs private clinics.

In the meantime are you following the diet and lifestyle recommendations?

Good luck with this!

I think I will have to go private as my doc can’t see past anxiety. She won’t do anymore for me untill I have started citalopram. Do you have any experience with citalopram?

Thanks for your reply.

This is not a widely understood thing. My GP didn’t know what was wrong with me, my husband even had me at a&e one day and the doctors there didn’t have a clue. Surenthiren diagnosed this within minutes of seeing him. You really do need to see him. For once I wasn’t trying to explain all those weird symptoms to someone, he was running them by me instead. It was like a weight was lifted.

I’m sorry, I haven’t heard of that drug. Is it specifically for anxiety? Before I saw the specialist my gp tried me on stemitel (I think that’s what it’s called!) for the dizziness but it didn’t 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.

It’s such a shame she won’t refer you. It does my head in how little doctors seem to know about this. It’s actually such a common cause of vertigo. Can you not insist or try another gp? Or, my GP said it’s possible to have an initial private consultation, but then explain you’d like to go forward and have any treatment on the nhs.

Let us know how you get on.

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 I’m offered.

It’s great you have help now. What improvements have you seen with the medication you are on?

Vikki x

I have three little ones too so I completely understand how hard it is. All the noise and chaos certainly doesn’t help this at all! Sleep deprivation into the bargain. It’s 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 ‘jumpy’ like old film, if you know what I mean. I didn’t 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 haven’t 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. It’s not an SSRI, it’s a tricyclit one. I think some doctors do use those sometimes though, so maybe it could help- but I that’s a big ‘I think’! 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 I’m surprised your doctor is still missing this. I’d never had a ‘migraine’ so was surprised with my diagnosis, but sounds like this is your problem for sure. Have you given up caffeine too? That’s the main one for me I think. Sadly red wine is a no no too.

Tricyclic even!

Try magnesium glycinate at 400mg at bedtime. It’s doing amazing things for me. xx

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Yep I take the magnesium and loads of vit B2 amongst other things. I’m interested to hear how the CO Q10 works out. It’s pretty pricey and I spend enough on supplements as it is so haven’t tried it yet. It would be good to hear if you think it’s 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?

I’m 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 :cry:.

Do the suppliments work well? I would desperately like a third child but know this isn’t possible feeling like this. I couldn’t 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 it’s like. Stress is the biggy. That’s the main thing surenthiran wants me to avoid. He’s says not to even obsess about the diet as then that becomes a stress in itself. I’ve downloaded an app called headspace which is great guided meditation. I do a bit of yoga too and I’ve learned to let a lot of things go. My house can’t 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 isn’t 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. I’m 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 I’m supplementing with these. My skin seems a bit more acne prone since starting the vitamins, but I don’t really care. It might also be dairy I’m eating. Not sure. xx

Hello Scotti, yes please send me the link to the magnesium glycinate. Thanks for all your help.

Hello liv85

I will try all the suppliments suggested and see how I get on. Thanks

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. It’s 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. I’m about 70% normal without the trigger foods… as much as I enjoy coffee :frowning: 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 sensitivity… xx

Really happy to hear this, Liv :). I hope it continues! Did you get off the Gaba? Did you have to taper or you went cold turkey?