I spent out of pocket and visited a Neurologist last week… Dr. Gregory Whitman in Los Angeles. He was referred by an acquaintence of mine who also has MAV. Dr. Whitman has worked with Dr. Robert Baloh in the past and believes i have a Vertigo Migraine like condition and or MAV. He is going to recommend my doctor at the Veterans Hosptial to try Propranolol. This is one of the last few med’s that I have not tried over 18 years. The Neuroligists at the VA don’t appear to either know much about MAV or don’t believe there is such a thing so they’ve given me a difficult time. Dr. Whitman will write up a letter to let my VA Doctor know that he agrees with the diagnosis that Dr. Baloh gave me at UCLA and recommendations for medication. I’m hoping that will help so that i can be treated.
because of you, i actually tried my first xanax today! (i’ve read some posts that has worked for you.) i was desperately dizzy and don’t have my appt until next week so borrowed one from my mother (bad i know but she gave me a 0.5) and gave it a shot. it made me really relaxed, took a 2 hour nap but still rocky =( at least i can cross this off the list unless it takes longer to work?
anyway, my dr has started me on propranolol 20 mg and it will be 2 weeks tomorrow- when its actually supposed to work? i believe it’s made me more fatigued and has not helped with the dizzy/rocky feeling but am happy that it will hopefully prevent future ones from happening? oh yeah, the first couple days i had slight tingling in my fingers but not for long and get a little lightheaded when i move too fast. start on a low dose! good luck!
Well i’m sorry the Xanax did not help with the rocking. It’s a god send for me! It is amazing how some drugs help some people while it doesn’t do much for another person. Remember, there is also Klonopin. What i’ve read about Xanax is it helps to suppress the inner-ear nerves. How true that is…not sure.
Please let me know if Propranolol gives you any help.
I’m not on propranolol, but I do take another beta-blocker - metoprolol (Lopressor/Toprol- which is a selective beta1 blocker (propranolol is non-selective). I’ve had pretty good result on it (along with lifestyle mods) - it got me from 35% to say 75-80% for much of the time. The side effect profile wasn’t too bad for me - although the nightmares in the first month were hair-raising and unexpected - no idea if that is an issue with propranolol. Also was very fatigued for the first month - but a physical tiredness not a brain-fog fatigue, but might have been able to avoid that if I’d titrated up to the 50g 2xday.
My GP picked this as the first line med given it’s good side-effect profile (neuro bounced me back to GP to do the meds merry-go-round once diagniosed). Having said that I am about to try adding prothiaden (low dose) to the mix to see if I can get closer to 100% (I’m greedy :lol: )
How are you going to kick off the Pro? 25 mg right off the bat or will you dump out the little beads and cut it down to a lower dose? I might kick it off at about 12.5 mg this Thursday night.
Hey Scott - no chance I’ll start with a full dose :lol:
I had planned to start on half or quarter tablet, but after your email checked a script and realised they are capsules. So yeah I would say I will start with 1/2 dose.
Is it OK to just take the beads “raw” or should they be mixed in some apple sauce or something?
LOL, we could always sprinkle the beads on some cupcakes!
Yeah, it’s ok to just do the beads. Most have done that here with Effexor. You might feel like a junkie though cutting lines of this stuff with a credit card on a mirror. I might follow your lead and start on a quarter as well. I’ll be mixing it with Paxil (about 1 mg). Doc said that was no problem.
:lol: … I just laughed out loud here at work imaging you vacuuming up Prothiaden beads through a rolled up tenner. The things we have to contemplate to have a normal day …
as I understand it there are different types of beta-adrenergic receptors (B1 and B2 - are you thinking what I’m thinking (for Australians on the board with kids) oh, and B3s.
The B1 selective blockers like the one I’m on only target the B1 receptors. Non selectives target all 3
but I’m not a chemist/biologist so someone else please jump in if I’ve got that wrong!
I have Dr. Baloh’s Assistant phone number. Her name is Dr. Cha…phone number (310) 825-5759. Hopefully that can get you in the right direction. Best of Luck!
I took Propranolol years ago and it wasn’t too bad. I took it for 3 months and I got up to 40 mg a day. The daily heads were a lot better but I still got breakthrough migraines. Every time I tried to get up to the amount that most people get control with (80 mg or above) I got bad insomnia and loose bowels. I still use the odd 10 to 15 mg to calm the heart palps at night.
I just took a dose of Prothiaden. This stuff really is like cocaine. When you open the caps it all comes out as a white powder. So I cut three lines on a mirror with a credit card (not kidding) and took just one line or about 8 mg. It has made my tongue go numb. This is clearly not the way to be taking it. We’ll have to devise some new strategy. I thought beads would roll out of the caps but not so. I don’t think snorting it through a tenner is a good plan somehow. :lol: Any ideas?
Hmmmm. might have to buy gel caps from a naturopath / herbal store and make our own with ha half dose? I haven’t got past the looking at the box of drugs stage yet :lol:
Thanks for the link. I’ll have a look in more detail a little later on. The thing is, some of the gel caps can cause headaches! They have MSG in them apparently and so the way to go is with veggie caps.
So, as you know, I took a hit of Prothiaden last night – about 8 mg. I slept a SOLID 8 hours last night for the first time in 2 months. I feel a bit groggy this morning but nothing that shouldn’t evaporate after a shower etc. So far it’s OK. The last time I tried Pro which was well over a year ago I think I dove straight in with 25 mg and it was way too much for me. This feels quite ok right now. If this stuff can sort out my sleep, I’ve won half the battle.
When are you going to stop looking at the little box of beauties and get that mirror out? :lol:
