Muppo (Carrie-Leigh) and Rockergrl (Christine) - Thank you!

I think that is really great advice. My docs have been so against the benzos and are afraid I will get addicted. I did try them at one point and the tiredness does wear off. It took some time for the this to happen.


Good on you Christine!

Dont get me wrong, even now the Benzo still make me dopey but I know what dose to take now depending on the hit/outcome I want :smiley:

In Lisa’s case, I think she needs to go hard. 2mg Valium will be like p*ssing in the wind… it wont cut the mustard given how drastic her symptoms are. I truly believe in using V/Klon to aid getting on board with a new med and used it with Nori and Gaba during my first week.

It’s just my opinion is all, but given Lisa is tackling this at bedtime hours, Benzos at that time would help pave the way… ‘IF’ it were me that bad, I’d be slamming 10mg V (although I believe Klon would be better) per night… stuff worrying about what time you wake up in the morning etc… ride it out for the first few weeks and throw whatever routine you currently have, out the sodding window.

Lisa - a few weeks out of your kids lives (because you’re sedated) is better whilst they’re babies, rather you being like this and out of their lives as they grow older. Take charge for you. I will be here every step of the way, whenever you need me. As will Chris.

thanks so very much. I understand exactly where you’re coming from with the benzos. but, I was on klonopin and it was hell getitng off of for me, and didn’t help at all so I’m not eager to try that again. I probably wasn’t high enough, perhaps, but rather not sleep through days. All I want is a med to help this illness long term. I want to see my sons a little each day, as awful as rocking/spinning is. They keep me going.

Of course you do. I want something to succeed for you desperately. How is your (3rd?) night on the Gabapentin?

Great aunty! (even if she is your parent’s sibling)

Muppo -
Started neurontin last wednesday actually so been more than that. Tolerating it fairly well. still same, but still early on and low dose so not expecting anything yet. Think the increased fatigue I had when I first started it is starting to dissipate back to my usual fatigue.

Good on your girl - stick with it!! I’m praying it will help and the great thing about this drug is you can get up to like 3400mgs!!!

So you’re still on 100mg a night. How long will you stay at that dose for?

Sending hugs and vibes - hang in there.

MAVLisa, sorry it took me a while to reply. I have a 13 month old son. I can’t believe he’s already so big! You have two boys, right? I hope they are doing well!

I do. thanks. they are wonderful. just wish I can truly enjoy them.

Dear Lisa,
I remember when you were pregnant with your first son. I am so very sorry that this MAV garbage is still has you in its grip. I have been reading these posts and hope that you can tolerate the Gabapentin. I have never tried that, although it has been suggested. I pray that you can get through this awful time. I guess no one would be on this list if they did not know what you were going through. MAV is just plain awful. It takes your life away. I am so happy that Muppo can give you some good advice to keep you going.
You are in my thoughts and prayers,
Dx: 2006, perilymph fistula repair, gentomycin injections & labyrinthectomy 2007; deaf; continued dysequilibrium;non-ambulatory but seldom have vertigo now, ;recalcitrant migraines 2-3 daily; meds: preventives & abortives: too many to list; BOTOX


very kind of you to write to me. how are you doing?

neuro is increasing neurontin very slowly. still only on 200mg which is very low. no improvement thus far, but early. not feeling terribly hopeful :frowning: Will write if any changes.