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Amy Louise’s Diary

Hi Amy

Sorry to hear that you are struggling at the moment - I think you are still doing really well and are probably expecting too much of yourself and your head is rebelling. When I started to feel better I also made the mistake of pushing myself too much - gardening, cleaning etc which always led to a relapse. dr S told me that most people try to do too much when they feel better. I think @Onandon03 is right when she says that you are missing your boyfriend too which will also contribute to how you are feeling. This time of year is quite miserable anyway - although the sun has appeared today for the first time in ages- without having a chronic illness added to the mix. I can also remember feeling as if my eyes and brain weren’t in time - Dr S says that my eyes, ears and head were out of synch which is why I was unbalanced and had vertigo. Luckily for me the Piz seemed to solve this so hopefully upping your dosage will work for you.
I know how you feel about work - I am glad that I have been able to go back to it, but it really exhausts me and my job isn’t physical like yours.
Keep on keeping on and be kind to yourself. Jan xx :pray:

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Hi Amy

Glad things are still edging upwards. I’m behind you as I’m going up more slowly in dosage than you. I’m due to go up to 4 tablets in four days time, following Dr S instructions. I did too much last Thursday (twisted and turned on ladders to clean struts of sloping glass kitchen roof and have paid for it since then).

However, I got on a ladder!! which was incredible given that last year my head swam on one when trying to change a light bulb. Dr S is right that we shouldn’t overdo it or have stress, not take on a lot of work but you have to survive. I don’t think we are ill in the right way for the benefits sytem as even most doctor’s think we are just over anxious worry warts. I’ve found friends and relatives very unsympathetic even my partner only really “got it” when he came into the first Dr S appointment with me and had it all explained.

Stick to the plan. I don’t think there are any quick fixes, especially when the roots of it all can be traced back to childhood/adolesence. Be kind to yourself. I felt teary too this morning as my finances are just
so dire, I feel such a failure and frightened by it. My sister was angry with me too (like yout friends)as I wouldn’t commit to some family event that requires plane travel and a hotel stay at her location and told me that " it’s not like you have dementia or cancer!". Thanks.

I understand how tiring it is always having to pull up your pants and get on with things. Sometimes I think we should just allow ourselves to have a weep and wallow or rage for a bit as it acts as a vent.

Hope tomorrow is a better day

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Honestly I almost cried when I read that , I felt like that so many times !i Remeber feeling dizzy just moving from my bed and I actually didn’t have any one to look after to me so it was jus horrific so I have to remeber how far I have come . I am so greatful for this community and I think ur doing amazing :slight_smile: one day this will be a memeory and hopefully our messages will help others on their journeys x

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Ah I’m glad ur seeing him Lucy I may have missed it but how did ur app go? It’s a long road but I believe there’s an end :pray:t3:

Hi jan

Thanks so much for the kind words really sweet of you and I bloody needed after spending most of last week in tears. I’m working so much and I think ur right maybe I’m not realising just how much it’s affecting me however I have to earn a living and pay bills.

Dr s was right for some 1.5 clears it all up and for me lol well I guess I have a stubborn brain but this illness has made me so appreciative of life and I’ve decided I’m not pausing my move to the states so I am still moving the end of the year I was a lot happier there especially with my bf . Bless him he’s coming over for 6 weeks next month to help me I do have a keeper . He has been beyond understanding without this site and him I wouldn’t of got through last year at all.

I hope ur resting lots being a teacher is mentally draining so it must be testing for you .

Oh yes my eyes and brain are not in time yet it’s better than it was but I can feel it’s such a bizarre sensation things just don’t quite catch up ! Wierd !

Thanks so much for the support really means a lot jan :slight_smile: hope ur still doing well . I had tinnitus the other day and thought of you hadn’t had that for ages no idea why ! I give up trying to figure this illness out ! :woman_facepalming:t2: X

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Hi @sputnik2

I literally feel for you as I have had the exact reaction from my friends not all of them some have been amazing they may not get it but they try !

People can be so cruel I lost my parents to cancer and I can tell you this crap is in some ways worse no one can see it and the symptoms are so wierd and bizarre . Don’t let ur sisters commente get to heart my older brother has said similar but I am pretty rude back now and just say NO!

You have a real condition and if people can’t understand that’s their problem ur main goal right now is health so be kind to yourself.

My whole job is over doing it so there’s not much I can do about that tbh I have to work! And it’s a strenuous mentally draining job :woman_facepalming:t2: Although i supoose working on a screen is worse ! But hey ho just gonna keep going there’s no quick fixes with this mav crap!

I did ask dr s about the spaced out feeling and it seems this should go once the symptoms do so here’s hoping pitz is the answer for both of us :slight_smile:

Sending lots of hugs :slight_smile: x

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Dr S confirmed I have MAV and started me on nortriptyline. I came out of the appointment with new hope and reassurance. I’d been feeling pretty desperate stuck in this illness until then.
You’re so super brave doing everything you do and how you keep fighting to get better and earn a living :slight_smile:

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I wonder how many of us left our Dr appt where we had a “real solid diagnosis” and broke down? I did :raising_hand_woman:t3:
Such a sense of relief and renewed hope! Hang onto that feeling Lucy, there will be better days ahead and we are fortunate to be moving in the right direction… not stuck in place any longer :hugs:

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Hi Amy - that is fab news - good for you. It is so much better to be with your understanding bf as the support our family and friends can give really helps, plus the pending move will give you another goal to work towards.

You are obviously a very strong person as you have continued to work despite everything that the MAV beast throws at you - your stubborn brain is keeping you keeping on and I salute you for that.

I think I am doing alright thank you :grinning: I know that many Mavvers are much worse off than me and I am thankful that I can at least get on with things without feeling dizzy. If I could just get rid of the tinnitus/ ear /head pressure it would be even better, but that is my goal for this year!
Have a good week. Jan xx .

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Well it’s been a few weeks since I updated everyone and after speaking to @Onandon03 I figured it’s good to share the whole journey so people don’t just get one perspective .

Well where do I start I started to see a new consultant called dr Nandi at the royal ent I must say I was impressed he knew a lot about mav and I’d even go as far to say he was better than dr s much more sympathetic and considering this was on the nhs he spent a solid 40 minutes with me .

I’m not saying dr s isn’t a good doctor but I do feel he is not the only doctor for this condition he is just simply mentioned on here ALOT!

Anyways I’m still floating around the 50% mark mostly because I have this constant bubble head / detached sensation. I did ask dr Nandi about this symptom and he said it is because of mixed signals from my balance organs and brain and not a symptom of anxiety . He also told me the medication that I’m on isn’t working or I would not feel the way I do. He said this condition can eventually burn out but when that happens he couldn’t say so he said most will need medication.

So I’m now weaning off pitzotifen and going up on my Ami . Currently at 20mg of ami no changes yet but dr Nandi did say that most people need 1mg per 1kg of body weight I found this really interesting ! So I will be going up each week by 10mg until I reach 70mg. I really hope this is the one to get rid of this constant detached sensation I have found myself getting very down about this symptom lately as it has lasted so so long part of me is starting to think I’m going to be stuck this way forever and that is no way to live :frowning: .

This symptom literally disables me and makes being outside beyond unbearable , if ami dosent work his second option was topirimate . Just wanna say thanks to everyone on here , without this forum I think I would lose my mind . Anyways sorry to be a downer just hoping this symptom finally goes . It is very hard to keep faith when you have had something for so long .
However all the success stories on here keep me hopefully I will eventually be one.

Hope everyone is all well and having a dizzy free day :slight_smile:

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As are all the other MAV symptoms I’d imagine, and what alot of possible alternatives there are, eh.

Very interesting. A formula for Ami. There is a formula for Propranolol on similar lines too. @getbetter gave it to me a year ago probably. He found it at a Migraine Summit. Don’t seem to hear consultants mention it usually though Dr Hain refers to it very specifically for dosing children with migraine preventatives.

That’s a comment worth knowing. Glad you felt able to record his observations for others to share.
Pleased to hear you were pleased with your second opinion and hoping you’ll be back on track soon. Helen

Amy, I am so happy you have found a good dr that seems knowledgeable and took so much time to get to know YOU. I think that may be the key… to know YOU and your life with MAV, since I now understand now how differently this disorder tests us. Doesn’t seem like there is a one-size-fits-all solution to this complex condition. Also so happy to hear about the Ami! I am so optimistic for you!!! :sparkling_heart:

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Thanks Helen really hope sharing helps anyone , don’t think even doctor get this condition tbh, the 1kg per 1mg makes a lot of sense my client told me they use this method for a lot of things so hey ho I got a long way to go on ami lets c how it goes I’m praying it’s my med!

I def think it burns out but also think meds help get the brain out of a cycle however as. A kid it always did but who knows but il keep everyone updated glad ur doing well again :slight_smile:

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Thanks so much lovely I really hope he can help me you sound like ur doing amazing on ur trip I’m so happy for you I hope to have as much luck with ami! :slight_smile:

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Ami seems to do the stuff and relatively quickly for those that can tolerate it. Still seems pretty much Top of the Pops! I think there must be other factors apart from mg per kilo. Cant remember PP formula of hand but I know it didn’t work for me. I need more but everyone’s different. Some get thru with tiny amounts. 100mg is tops recommended for migraine I believe. Helen

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Hi Amy
Good to hear that you have found someone who is looking at things from a different angle to Dr S. I bet you are glad to be weaning of Pizotifen! I am still taking it but noticed that since I increased the dose to 2mg last year I am slowly putting on weight :slightly_frowning_face: So I shall be glad to be weaning off it myself in Sept. Fingers crossed! I can’t complain about Piz really as it seems to have sorted me out apart from still getting tinnitus and ear pressure for no apparent reason. I have given up trying to work out why.
God luck with the ami - I shall watch out for your updates to see how you are getting on. :blush: Jan xx

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Thanks so much jan god I really hope something helps have felt a bit down in the dumps recently . Even dr Nandi still leaves his apps long in between so if ami dosent work I don’t know what to do.

I’m so glad pitz has helped you :slight_smile: in terms of pitz u can def keep weight off it’s just a little harder I can’t say I’m sad to be off it finally have a normal appetite again lol x

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Come on Amy. You’ve been there before and come out the other side.

No doubt he does that because he isn’t expecting to see any quick and sudden improvements so he’s allowing time for improvement to occur. Sorry to be a wet blanket but I waited eight months with the Propranolol which I’m sure is exceptional and I appreciate Ami generally moves quicker but then I was told mine was a complicated case just as you were told you had ‘a stubborn brain’ - same thing really. Helen

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Afternoon guys

So I went to see my childhood doctor today , he basically knows of my history with mav and we discussed my symptoms and my suffering of this cotton wool head / spaced out feeling which I do think is linked to pppd as I fit the exact description . My gp basically said the attacks have affected my brain and it hasn’t reset he mentioned brain damage which freaked me out dr s says brain irritated ! However he is only a general practicioner!

He is a lovely guy and is basically willing to give me whatever I want to try i mentioned the use of ssri ‘s and he said he wants me to start fluoxetine ( prozac ) as it’s a pretty easy med and because I’m at child bearing age he said if this works I could potentionally stay on it when pregnant if I needed to. He’s starting me on 20mg and if I see no change in a month I am to go back and then I think I will most likely start venlafaxine .

I feel exhausted , I just want to feel semi normal and I cannot believe how long I have no felt like I’m living on another planet ! 16 months and counting not one normal hour let alone day! So if anyone has any success on ssris or Fluoxetine in particular please do let me know . If this fails venlafaxine will be my next port of call :pray:t3: Also thanks for all the support on here god knows where I would be if I didn’t have these groups! :slight_smile:
A

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Good to hear you have such a supportive doctor. Let us know how you do on the new med. and hang in there, you’ve done amazing staying strong through this long period, you can do what’s next :slight_smile: