Rant against family

They know I can’t go out. I’m shoveling lyrica down me at increasingly higher doses and yet they still ask ‘Sure you won’t go on holiday?’ Just because they are .nervous ’ and don ‘t want to go on hols themselves without help’ I just wish they could spend an hour inside my head, Then talk about bloody holidays!

Last August, me and the family due to go to Sardinia. Had been virtually bedridden for 2 weeks. No way could I pack, get to airport, tolerate airport, fly to Sardinia, tolerate airport there & hire car palaver, tolerate journey to apartment…you get the gist.

Well, I managed it. Dosed up uo clonazepam I managed packing my stuff (forgot quite a lot but that was ok), somehow in a clonaze blur got to airport (dh driving, not me!). Vaguely remember thinking I was going to die at GAtwick - took more clonaze. Was pretty much out of it on plane and at Sardinian airport. More clonaze got me thru the drive to the apartment. Vaguely remember arriving at the apartment. Woke up about 24 hrs later feeling no worse and actually a bit better then when I’d left.

Had a great holiday. 2 weeks with about 4 ‘bad’ days in total when really couldn’t do much at all.

Needless to say MAV bout returned soon after arriving back in the UK…

Dizzy Izzy

PS - what dose of Lyrica have you now reached?

Dizzy, I’m just experimenting. First week 3x50 which really sedated me so the symptoms were masked. At the end of the week the symptoms broke through so I went up to
100 at night x 50 twice a day. The dizzies broke through so now I’m trying 150 at night x 100 x50. completely zonked out at first. guess I’ll use them until the brain is no longer sedated and the symptoms are unleashed.

How are you getting on?

Hey Fiona

I started on 50mg x 3 a day like you. No sedating effect and the dizzies and migraine pain appeared to vanish overnight after the first dose. But then by day 3 I was back in hell so increased to doubling the night dose to 100mg. Again, near-miraculous transformation the following morning. Possibly a slight sedating effect. That was 5 days ago. I’m expecting the dizzies to return any day now but so far not really (maybe a bit by the evening, but nothing major).

I am however also on 100mg dothiepin at night, due to my pre-existing panic disorder. I’d like to come of this as the MAV developed while I was on it (have been on it since 2003, MAV appeared 2004), so I assume it’s not helping the MAV. However, I’m not going to try and come off it at the moment as it could mess up my brain chemistry and who knows what that might trigger!

Maybe the Lyrica combined with the dothiepin is helping - I’ve no idea really.

The Lyrica seems to give me a calm ‘I can handle this’ sort of feeling. It’s a bit like a benzo but MUCH milder and subtler, clonazepam giving me an ‘I don’t care’ sort of feeling.

I’m also feeling a lot of stress about not being at work and whether I want to be permanently separated from my husband, to whom I am presently living next door. I went round last night to read my children a bedtime story and just being in the house with him and the unholy mess everywhere made my feel stressed and mildly dizzy.

So the Lyrica’s got a lot of work to do to help me with this.

I’ll let u know how things progress in a new Lyrica thread in a week or two, and it’s also good to hear how it’s panning out with you and the other Lyrica-takers.

Dizzy Izzy

You have my sympathies with the whole family thing. I’ve had all sorts thrown at me over the years. Things like ‘oh you can do it when it suits you’ and ‘well how come you could do that yesterday but you can’t today’. The bottom line is this - unless they’ve been there they will never understand fully. They can try, and they can even be sympathetic (sometimes!) but they will never KNOW how it feels. I’ve been really bad this week with a horrible migraine and full on dizziness yesterday and today. We are going away next weekend and my other half said to me yesterday ‘bet you’ll be ok next Friday’ because he knows I really want to go away - pretty much inferring that I’m ill when it suits me. Bonkers really cos I’ve cancelled two holidays in the past so he’s chatting shit! I think he gets frustrated with it and says stupid things. And my Mum (who is actually quite caring and sympathetic) is always saying things like ‘are you sure you don’t want to come’ and ‘you’ll be ok when you get there’ lolol, people just don’t get it. Another thing that she says constantly is ‘if you keep doing it you’ll get used to it’ - she just can’t grasp that it isn’t a case of ‘getting used to it’. I can do something a million times but if it makes me dizzy it will still make me dizzy. So yes, families - ugh.

get used to it…if only! my VRT lady said to challenge it…i did and it crashed.

Dizzy , I get a real sense these meds will work for you ! I’m sorry you are having a tough time . I do think that a huge crash like yours is consistent with a deadfull event and continuing stress. I’m so sorry you have to go round and read to your children no wonder your brain is kicking up. i guess if the situation resolves itself so will the MAV.Mine crashed after a ghastly year. I do rather suspect that I am one of the handful of Dr S’s failures. Lyrica is used for high anxiety which is why you are feeling calmer. Long may it continue. I will carry on with Lyrica as long as I get the sedation but as soon as the symptoms permanantly seep through i shall call time on the drug.

Sally if you can get to Dr S given your age eg not peri menopausal…he will sort you out!

As a fellow Lyrica taker I though I’d let you knwo how I was getting on! I was up to initial dose of 150mg twice a day. I was sstill struggling around period time and also for the last couple of weeks I’ve not been as good as before. I went to my GP and he’s told me to start increasing the Lyrica by 25mg a day and to try to get to 300mg twice a day. I also asked about menopause - some of my periods have been 7 days apart! He said that if I was menopausal periods would be less frequent and he said there’s no point testing to see if I’m perimenopausal as they’d just say yes you are and there’s nothing that can be done! I don’t really know if this is right of not, but at the moment I haven’t got the energy to look into it. I can feel the anxiety hitting again as I haven’t been well - great!
I’m due to go on holiday next week - only 5 days in North Devon and I wish I didn’t have to go - the travelling does me no good and I’m scared that when I get there I’ll spend the week flat on my back same as last year. It was a year ago that all this started for me and I can’t believe I still haven’t got my life back!
If I won the lottery I gladly give it all back if I could have my health back!
God - I sound like the voice of doom!!!

I’d trade fingers, toes, everything I own and start again from scratch for this to go and have begged God (or whoever) to grant one wish to take this away … some days I’m optimistic and think well I’m a lot better (emotionally and general well being wise) than I was 3.5 weeks ago where one of the nights I actually thought I might die spinning… and then I lose all faith when, like tonight, the rocking ramps up and goes postal on me.

I literally feel like I’m swinging back/forth/up/down/side to side and it’s all coming from the pulsating in my head that feels like a full blown headache but with no pain - it feels like my brain is trying to escape and push its way out!

My one blessing is I have the best parents, family, friends in the world who are trying to help me though this as we approach month 5 … but what will be the case if I’m like this in a year’s time and so on… doesnt bear thinking about.