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MAV or anxiety?


#6

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.


#7

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.


#8

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


#9

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.


#10

Tricyclic even!


#11

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

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#12

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.


#14

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


#15

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.


#16

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.


#17

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


#18

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


#19

Hello liv85

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


#20

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


#21

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?


#22

Thanks so much, Asli!! I was on such a low dose I could quit cold turkey! (100mg three times a day). The ONLY problem with my natural supplement regimen that is working so well is the (ahem) laxative effect of either CoQ10 at 400mg or the magnesium (although this type is supposed to be not as bad). OMG. I am cutting out CoQ10 tomorrow to see if the magnesium is helping me more and to find out which one is the culprit. This saga never ends… :slight_smile: xx


#23

Awesome! Well, the likely culprit is the magnesium since it is a laxative, but you’ll find out.

Liv, I remember you saying that you had MAV and didn’t treat it with meds for a couple of years. Do you think the gaba took you to a better place as a baseline? I know the supps are helping you that’s what you believe that is keeping you well (which is great); however, would you think that if you had never taken gaba, you would be doing as well with the supps alone or the gaba did improve you with lasting effects?

Thanks, dear!


#24

Hey there! The magnesium is working on its own better than gaba or any of the other medicines ever did, and I guess it’s less toxic (safe for pregnancy) but on the other hand, it’s super crazy with the digestion. I’m just hoping that it was the CoQ10 that was doing that, and maybe that will go away if I cut that one out! Hard to tell which.

The gaba has a very short half life and I don’t think it brought me down to a baseline because the day I went off of it without magnesium once, I was super dizzy and off balance. So I think it’s the magnesium, CoQ10 combo. Or just the magnesium. I took 800mg total of mag glycinate today and seem to be doing well xx


#25

Hey Liv -

sounds good. Best wishes with the 800 mg :).

Could you post for us the brand of mag. gly. you are using to make sure we try the same.

Thanks!


#26

Hi Asli!
Sure! Happy to be of help! The brands I got were at Whole Foods but they might be harder to find at other stores. The are KAL brand mag glycinate and and the 365Everday (Whole foods brand) of CoQ10 (400mg of that plus vitamin E). I am not taking the CoQ10 today to see which of them was actually helping more and which was causing the laxative issues. I think at high doses CoQ10 can also do that, so I might try lowering my dose if that’s the one that was the issue. Glycinate is not supposed to have the laxative effect, so hopefully that’s not the one.
Try them out! I’ve been doing better than I’ve been doing in three years just on them. I even had 2 beers last night when I went out and was OK. I’m never totally 100% the way I was before MAV hit, but I will be OK like this I think.
Liv xx