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Vestibular migrane


#21

its so odd this thing, i take effexor (venlafaxine), i have been on it for almost 7 months. I am taking a high dose for mav, 150mg, but good for anxiety/ depression due to postpartum. I think i have seen slow but steady improvements throughout the months. I am working full time, teaching, take care of a 15 month old and have travelled abroad. Its not pleasant a lot of times but I am determined to keep on with my life, for me, my husband and my son. :slight_smile:
My husband from time to time asks me if I am still rocking and I tell him “oh yes, everyday at different levels”, but he is happily surprised I am doing almost everything before this thing happened, because I had very rough months at the beginning. So be patient, its a long ride but you do get better. Try to do some exercise, that is really helpful. Diet is difficult but the restrictions makes it easier in the sense that you cook the same almost everyday hehe. I slowly reintroduced decaf and alcohol here and there, to enjoy life.


#22

Possibly/probably. I used to get that alot. @Amylouise put up a thread about it very recently. That Walton link gives an explanation for most symptoms you might experience. @janb’s had great success with Pizotifen. I’m sure she’ll chip in with her experience of timescales, or you could just check out her older posts. I think it’s very early days and you need bit more time and patience. Be careful not to dump the Pizotifen too soon because as you’ve already discovered some other preventatives might not suit you. No drug is going to give you perfection. Helen


#23

Hi @Natty04

Good advice from Helen - I have been taking Pizotifen since June and I now take 4 x 0.5 mg per day. I would say it took about 3 months before I felt consistently better and in September I was able to and drive again having stopped completely back in April when it all started. Throughout this 3 month period I had days where I felt completely normal in between bad days where my ears and head were full of pressure and I felt unbalanced. I went back to work in September (part-time, 3 days per week) and seem to be coping with it - so far!
I am still having ear issues - feeling full and tinnitus - but I am not dizzy. I have to stay on Pizotifen and the 6 Cs migraine diet until September 19 and after that might be able to decrease the dose and re-introduce food. I have realised that this is not something that can be cured quickly - it has taken me until now to accept that.
Like @dizzy3 I drink quite a lot of decaf tea and I decaf coffee per day - I could not manage if I had to give them up. I haven’t been brave enough to try alcohol again yet though!


#24

thanks for your reply @Janb that’s great news! I have been on pizotifen for 7 weeks so I will continue with it! I have cut out alcohol, cheese, choc etc! Do you feel like your head has a weight inside or like full of air? My pressure is felt at the back along with full/popping ears! Did you feel dreamlike outside? So hard to explain how it feels but I feel like I’m looking through glass xx


#25

I think you might find quitting/reducing caffeine of greatest benefit. Not all consultants believe diet helps at all but Dr Silver, another eminent one, states it is imperative to quit caffeine for two reasons. It is a well known trigger and also continued use of caffeine can reduce the efficiency of the preventative drugs as can excess use if abortive painkillers. I think you’ll find ‘Alice in Wonderland’ syndrome is one of the less common MAV symptoms. Few people seem to be affected by it. It’s no more sinister though because of that, it’s just how it seems to me. Helen


#26

Thanks for the advice @Onandon03 I have heard of a few ppl with dreamlike feeling and Amy relates to it! Horrible symptom I wish I didn’t have! It’s the worst actually. I could deal with the head/ear pressure if that buggered off lol


#27

I suppose it feels as if your drunk! I can clearly see rain as I stand outside but nope it’s not raining :tired_face:


#28

Now, that’s a symptom I can relate to. I’ve just been out walking on the dullest dark November day - dark by 3.30pm type day - and gradually as the walk progressed I became more and more like I was ‘drunk’. Have you ever been 24/7 constantly dizzy since MAV started? i was for more than two years. I think the ‘drunk’ feeling is a sort of halfway house between 24/7 dizzy and feeling steady, and it will vary depending on the intensity of trigger stimulation at the time. It’s another degree of being off balance. Alcohol affects your balance. MAV does the same so it’s not surprising we feel ‘drunk’ I guess.

Do you wear dark glasses outside? Light has an enormous affect on MAV and balance. Helen


#29

Hi @Natty04 - I am sure that the diet is also helping me recover as well as the Piz. I used to have lots of stomach problems too and since the diet that has almost cleared up. When I get the head pressure it feels more like a weight I think - as if someone is pressing down on the top or back of the head. I haven’t had as much head pressure lately - more the clogged up ears but I am wondering if I am drinking too much decaf tea / coffee. My ears also flutter as well as ring loudly , but interestingly I had fluttering ears long before this all started - always in the ear that has a perforated drum so I thought it was something to do with that. Definitely keep taking the Piz - I am convinced it is working for me. X


#30

Sorry- also meant to say that I can’t remember a feeling of looking through glass but as you say it is difficult to find the words to describe the odd sensations we get. A whole new vocabulary - MAV language! Jan


#31

You hit the nail on the head there Jan. @Amylouise put up a thread entitled ‘tingling/goosebumps’ recently and I wondered whatever that was. In fact I remember thinking ‘another symptom I’d escaped’ but after further discussions it turned out that was my ‘shivery Cold imminent but no sore throat’ symptom. Different person, different description of same thing. Should make us see how doctors find it difficult sometimes.


#32

Thanks for all the information guys it’s really helped! Yes I can relate it feels like someone is pressing down at the back and top of my head! The fishbowl vision is really hard to explain. I’m sure we all describe things differently when they are probably the same sensations. I also get fluttering in my ears from time to time and the ent said it’s because it’s being irritated! I’m prauing that pitz is the med for me just need to be a little more patient I guess!

This is how outside looks to me or the best picture I have found that is similar to how my vision feels:


#37

That looks crazy poor you!.. is this episodic or all the time?

@GetBetter gets a swelling of his eye(s) I believe, I wonder if he gets any distortion because of it?


#38

Thanks @turnitaround yep 24/7 it drives me mad! I showed Amy this pic and she could relate! That’s how it feels dreamlike


#39

Gosh, that’s so odd … I wonder if that provides any clue to the doctors?


#40

I haven’t shown it to one yet. I also have raynauds the ent spotted it but I never knew there was a link to migrane! So bizarre


#41

Look up a ‘Fish Eye’ camera lens on the internet. It’s wide distortion, That’s what you are experiencing I expect (I’m a Photographer).


#42

It’s not as extreme but kind of feels like I’m looking through that lens! It’s a lot worse outside than indoors


#43

Wider horizon. No walls your eyes can use for ‘upright’ reference. More movement in peripheral vision. Etc


#44

Oh wow! No one has ever put it like that! I hope it buggers off soon! That’s kind of why it feels dreamlike because it’s constantly like looking through a lens feeling!