Hi everyone, i havent been on here for a while! I had been doing well on 300mg of pregabalin (lyrica) and 75 micrograms of clonidine. I started an intensive job in jan doing 25 hours a week as a research scientist ( i hadnt been able to work for 2.5 years). I had a really good 4 months and it felt amazing to b back working and driving 6 hours a week back and forth to work. There was still room for improvement though but as i am getting older and want children i started to slowly decrease the pregabalin and got down to 150mg a day. The last week has been hell i have been so dizzy and last night i had a severe vertigo attack and now my positional vertigo is terrible. I dont know what i am going to do about work. I phoned dr surenthiran secretary to get some advice and she said he would speak to me after he had finished with a patient so i waited all day and he didn’t phone so i called back and a different secretary answered and said he was on holiday and i should go to A and E!!! She was v rude!
Is anyone else here on pregabalin? I am thinking i need to add a different drug. Does anyone have any experience of combing pregab with noritrptyline or with pizotifen?

Hey Becks. I’m sorry to hear you’ve had a rough time recently. It’sassicely encouraging tho that you were so well for 4 months. I take 100mg gabapentin and 2mg pizotifen. It’s been amazing. I can’t get higher than 100mg on the GABA as it just makes me so ill, I’ve tried about 5 times! The pizotifen has been a life saver! Literally changed my life, given me loads of 95% days, really recommend it. I understand the children dilemma, I’m 32 and have been married 4 years this year. It’s so frustrating waiting but the thought of coming off the meds is so terrifying. Good luck. Hope dr s adds something else to get you back to where u were. Xxxx

can you go back up on the lyrica? this is sort of off topic but how did u manage the courage to start working again? and how did u explain to employers about your long absence from work? did u mention mav?

also did u have unsteadiness when walking and does either lyrica or clonidine help with that?

Thanks for your reply dizzier Lizzie, do u c dr surenthiran. I think the most safe end for pregnancy is amitriptyline. I tried this drug up to 50mg and it wasn’t that helpful. Is it easy to get up to a therapeutic dose of pizotifen. I have been married 6 years and all my friends have had their babies now. I find it v depressing especially now I know my brain needs these meds do much. I wish I could use a surrogate lol!

Hi Becks
I am a patient of Dr S I take lyrica, nortryptoline, and pizotifen have you spoken to him about wanting children he may be able to try you on a med that’s safe in pregnancy.
Shenay x

Hey Becks. Yes I see Dr S too. Pizotifen was very easy for me, far easier than gabapentin. I am on the max dose and its been pretty much side effect free. Only a little tiredness, oh and it makes u starving hungry and I never feel full so I put on about 5/6lbs. Not ideal but a fairly small price to pay in my mind. Dr S told me that pregnancy is usually protective to mav and having asked on lots of MAV Facebook pages women usually report feeling much better, though some find the first trimester hard as I guess it involves lots of tiredness and sickness. I’m inclined to get off my meds and just go for it as life is too short and like you, MAV has robbed me of a career so I don’t want it to rob me of a family too. Good luck and hope u feel better soon. Xxxx

thanks everyone for all the replies.
I am feeling a little better and managed 4 hours in work but dreading going in tomorrow. i am worried this is the end for me and my job that I was enjoying so much. Sarah-I do have a massive gap in my CV. I tried to work part time on a years contract with my last boss but I got so ill I had to resign and this was for the second time. With my new job i am being paid by the day as a casual worker so there is no contract and my employers knows me, however he is not totally aware of how ill I have been and it is going to be devastating if i have to leave this job.
I have started to increase the pregabalin. I am on 200mg. I have made an appt to see Dr S a week on Friday. I think I am going to beg him to swap the clonidine for pizotifen. I hope i will be well enough to travel.
Thanks for all your advice.

Becks –

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I had been doing well on 300mg of pregabalin (lyrica) and 75 micrograms of clonidine

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Why not return to what was working? Sorry if I missed something that is stopping you from doing so. S

I am on lamitcal xr and started amnitryptyline. I still feel like my mav is related to gaba because when I take my ambien I feel it helps almost stop my boat feeling completely and I must “force” myself to go to bed because I feel so much better. I wish their were easy answers for all of us.

Lpeers, what is the connection between gaba and ambien? Do you take ambien every night?

Scott-Thanks for your response. Yes, I was doing better on 300mg of pregabalin but nowhere near normal and working 3 days a week was pushing me to my limit. I was so grateful to be able to work but could not do much more apart from work and then rest. As for the clonidine I was supposed to be on 100 micrograms a day but when i went up to this I got heart arythmias so had to reduce to half the dose and I don’t think it is enough for me.

Oh…I get it- cognitive issues from this darn condition. I do take ambien every night. It helps me for it really slows, almost stop, the “waves” ; so I can sleep/ get to sleep.

GABA Receptors
As a 1998 article in CNS Drug Reviews explains, zolpidem binds to a subtype of GABA receptor. GABA is a neurotransmitter that primarily works to inhibit the activity of neurons. When zolpidem binds to this receptor, it slows and stops activity in certain parts of the brain. For this reason, zolpidem is often classified as a hypnotic. It diminishes activity in parts of the brain that are responsible for processing thoughts. By slowing cognition, zolpidem makes it easier for patients to fall asleep. Some formulations of Ambien release a constant amount of zolpidem over a period of time, which makes it easier for patients to both fall asleep and stay asleep.

This is what I had found. I just know I feel better after I take it. I wish I had answers and know it probably sounds really bizarre to others…believe me, I know it is odd. This is some info I found after a long time of it helping when I went to bed, and trying to maybe understand.

I do hope you feel better, Becks.

I do hope you feel better, Becks.