Has anyone except dizzymingo tried this med? Dizzymingo are you still doing well?
I have been med free for a month and can no long deal with the pain with nothing. I have tried the amityptline portion of the med in the past but nothing in combination like this.
Thank you for any comments.
Sally
Hi Sally,
Have you also tried a benzo on it’s own which is the other part of the limbitrol? How high of a dose did you get with Ami ? What was your experience with it? I guess since our brains are so sensitive it may be easier to titrate and assess the individual meds if taken separately. Just a thought.
Lisa
I am taking 50 mg of amitriptyline currently along with 50 mg of topamax–which I don’t think is working. We added the ami. back in because that was the first medication my GP rx’d for me and was seeing no results with topamax. I now have been on this current dose for about 6 weeks (topamax) and 3 weeks (ami). I still take ativan as needed. I try not to take it more than once a week. A few months back I was taking the ativan daily and felt pretty decent, however, I have now become afraid I will build a tolerance and it won’t be as effective.
Sarah
P.S. I had a few pretty decent days this week, with the exception of today, I still don’t think this is the right combo/dosage for me.
Hi Sally,
I wrote in another post about many docs using benzos to treat MAV. Usually they use clonazepam. If you see results from ativan, you might do very well taking a longer acting benzo such as clonazepam daily. I’m not sure Hain is keen on the benzos, but other docs certainly prescribe them regularly for MAV. This illness is so devastating that if you find a drug that lessens the symptoms, go for it. Many people take benzos daily and are fine, do not become addicts, nor do they need increasing dosages. In fact, with MAV, most respond (if they are going to respond) to fairly low doses of benzos.
I hope you feel better soon.
Best,
Lisa
Clonazepam was the first med taht Dr Hain put me on while I was in absolute misery waiting for my first surgery. It has really helped me, although it made me quite tired at first. I used to have to come home for lunch, sleep for 45 minutes, drag myself off the couch (if I set a timer, my dog is a good alarm clock!) and get back to work. But I am used to it now. I take it 3 x a day. Cutting down or getting off of it is another slow, long term project.
Claudia
Hi Lisa,
Ativan gave me much relief but it was very short lived, within in 4 months I developed a tolerance that left me incapacitated. I was switched to Klonopin which made we wobble terribly. I used valium to withdraw from the Klonopin. My doses of ami varied. I’ve tried to take 10 mgs. up to 75 mgs. When I took 10 mgs with Ativan it helped alot but the rollar coaster of Ativan was just horrible. That is why I asked about the combination of the long acting benzo plus the ami in one pill might help. Do you know if Librium is very similar to Klonopin which to me was very harsh and depressing? Ativan just made me feel normal for a couple of hours but as it wore off the rebound symptoms were awful, severe headaches during which my skull actually swelled.
Thank you for your concern.
Sally
HI Sally,
All the benzos are somewhat different for you as you are seeing with your reactions so it is hard to say how you will respond to the limbitol. Ativan is not generally given (in my experience) as a daily drug because of it’s short half life so I am not surprised that you built a tolerance and felt it stopped working. How did valium work for you? I know you were only using it to get off of clonazepam, but since you tolerated it and may be interested in adding a benzo, it might be best to start with a trial of valium? Chlordiazepoxide (the benzo part of limbitrol) has a little bit shorter half life than valium and clonazepam just so you know, but yes, it is still longer acting than ativan. Just a thought.
I also wanted to add that you have only been on the AMI for 3 weeks and that is still a bit short to really see if it would work. From my memory, I think you said you thought it worked at the beginning before adding the topamax? It is so hard to tell what is doing what when there are 2 med trials going on. A benzo is easier to discern because it works much quicker.
Keep us posted.
Warmest,
Lisa
Lisa,
I think you must have me mixed up with someone else. I am not on any meds right now but have tried at least 10. This is my sixth year of non-stop rocking, bobbing, swaying and relentless head pain. Most of the meds have backfired terribly on me. Valium did nothing for my motion, it may have helped the anxiety a bit. If it worked I would definitely continue to take it. When valium wears off I get terrible anxiety attacks which I never had before even with the motion feeling and pain.
Thank you for you opinions on all of this.
Sally
Sally,
I’'m sorry that you’ve been suffering for so long. Were you unable to tolerate the meds? I have a tough time tolerating as well, but I don’t think I’ll get better without the proper med, which is hard to find. I’m pregnant at the time, but cannot wait to retrial meds in a hopefully short 5 months. good luck.
Lisa
Lisa,
The meds generally make me feel so much worse that I rarely have been able to stay on them for very long. Tegretol helped me once, everything settle down for a week but then it stopped working and everytime I have attempted to go back on it did not work.
Hopefully your pregnancy will go smoothly from here on out.
Sally
Sally- I’m sorry that you haven’t been able to find a drug that works and you can tolerate. It is quite hard
Thank goodness, the pregnancy has been going smoothly so far. The MAV is another story, though