Suddenly so much worse

I’m into week 3 of my ‘crash’ and am really frightened. My symptoms seem to be worsening daily. The dizziness wakes me up at about 4/5 am. Throughout the day I’m having to hold onto furniture to get around because I feel as if I am on board a ship in rough seas. Added to which my eyes seem stiff and I can’t look up or around without my head rattling. I don’t understand what’s gone wrong. I have taken some diazapam but even that doesn’t seem to be relaxing the symptoms. I just don’t know what to do.

Hi Fiona

Sorry to hear you are so ill. I too am in a MAV crash but at least I can sleep and walk around the house.

I believe like me you are also a patient of Dr S in Kent (sorry if I’m wrong about this). Do you have another appointment with him? Are you on any meds at the moment? I’ve never tried diazepam but find clonazepam helps for a short while (up to a day). I know this is not a long-term solution but sounds like you need something to get you through this patch, and it IS only a patch. I’ve had days recently when my dizziness feels like the worst it’s ever been and I panic that I’ll be like it forever. I have to remind myself that it’s been this bad before and it can change quite suddenly.

I’ve just started the Lyrica - was told to expect drowsiness but I’ve sort of had the opposite - waking early (for me). Haven’t really had a benefits OR side effects yet but only on small dose so far. I think Lyrica wasn’t much help for you.

I remember Dr S saying he sees 20 patients like me (us) a week. Overall he reckoned he’d seen over 2000 patients with this and could count on one hand and picture the faces of the ones who’d failed to improve. Arrogance maybe, but if correct pretty impressive!

My first bout of MAV was over 20 years ago. It lasted on and off for 4 years. Obviously undiagnosed (I was told it was all in my head) it suddenly went away one day and didn’t return for 13 years (I think having babies re-triggered it). It was very severe at times.

I know this isn’t much help when you’re in the middle of it. I think a few of us here in UK are having a crash e.g. Muppo. Perhaps it’s the weather!

Hope you feel a bit better soon

Dizzy Izzy xx

Thanks Dizzy. I have an appt to his his VRT lady next week. Dr S is on holiday until the 24 th and I don’t see him until July I think I just want to know why this deterioration. I know he did say that it might get worse with the menopause. I use diazapam which is a cousin of your benzo… I think I may re try Lyrica I the absence of anything else.

Re your Lyrica and wakefulness I know that both amtrip and nortrip did the same for me.

Hi Fiona

I just read thru some of your old posts and see now you’ve tried lots of meds so sorry about that!

It might be worth trying clonazepam as it’s different from diazepam and you never know. I have found it to be a miracle sometimes for me, other times not so good - I reckon it depends on our hormones at the time we take it.

Also, I must say that I did NOT find generic clonazepam much help at all and now insist on the branded Rivotril (UK’s Klonopin). Maybe your diazepam’s not so good if it’s a different make from your usual.

Can’t say much re Lyrica as haven’t been on it long enough - but it might be worth a retry - unless u had horrid side effects.

Yes I remembe Dr S said he was going away on his hols - v. inconsiderate of him I must say :lol: !

D-I xx

I’m sorry you are getting worse. that’s awful. I’m in a really bad spell right now myself. The last two months have been really awful. some days i don’t know how i’ll make it through the work day but somehow I do. It’s so hard to deal with because i’ll be okay and then wham it just hits and then it gets better and then it gets bad again. I have severe allergies and the pollen is sky high so that’s the cause of mine - my pattern for 30 years now.

i hope you feel better

chris

mine is super bad right now too, i was hoping it was the transition of my new birth control meds, but i don’t think it is. i actually think it’s the weather changing…i feel like my head is a barometer! i sware! but i am super dizzy and taking the generic kolonopin. that is interesting that you didn’t find the generic kolopin (clonazapan) as helpful…i might look into that and try the real stuff!

hope you and all of us can hang in there!

Hi Fiona,

Sorry to hear you’re having a bad time. Do you have any idea what set this off? Is there a lot of anxiety associated with your symptoms? There must be as it sounds quite distressing. How much valium are you taking?

Scott

Hi Scott. I think it maybe because over the last 2/3 months I 've felt able to increase my activity by 500% . Then went to the cinema for the first time in years. This is compounded by absolute terror daily of the post bringing a summons from the benefits agency calling me in for an interview with the likely hood they will find me fit for work however ill I am. This is due to new government’s obsession with getting us all off incapacity benefits to the lower job seekers allowance. I know I will have a fight on my hands going to my MP etc.

I’m taking 5 mg valium but its efficacy is wearing off with too much use.

Have desensitization shots helped anyone with the bad seasonal allergies? Chris?

David thanks for asking but not really. Been on allergy shots off and on since i was 5 years old. I got off two years ago last time. Don’t think there is much improvement with them. maybe there is. Problem is I would get reactions when i woujld get them and usually feel worse the next day too but something to try again sometime. Problem is my insurance has changed so it would cost a fortune for the serum now :frowning:

chris

— Begin quote from “iwantjrm”

Problem is my insurance has changed so it would cost a fortune for the serum now :frowning:

chris

— End quote

Ouch!