Benzo Tolerance?

Yesterday I was so gladly informed that some doctors do indeed rx benzos as a preventitive for MAV sufferers. I was doing a little researching online and am now a bit confused. It seems that a tolerence level can be built up to these types of drugs over time rendering them less effective (at least for sleep and anxiety control) any idea if the same is true for supressing the vestibular system? I sure hope not! Any input, thoughts, of facts would be much appreciated :wink:
Sarah

— Begin quote from "sasad"

Yesterday I was so gladly informed that some doctors do indeed rx benzos as a preventitive for MAV sufferers. I was doing a little researching online and am now a bit confused. It seems that a tolerence level can be built up to these types of drugs over time rendering them less effective (at least for sleep and anxiety control) any idea if the same is true for supressing the vestibular system? I sure hope not! Any input, thoughts, of facts would be much appreciated :wink:
Sarah

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I have heard and read what you have also am I am not sure. I know that my mother used them for years and became very addicted to them and kept uping the dose because after a while the smaller dose was no longer working. But she was not being treated for Mav but depression and anxiety. I take a very small dose of valium everyday and have since January more or less…I have not changed the dose as I am very afraid of what may happen if I take anymore. It calms me not sure whether or not it is helping the MAV so to speak, but I have done a number of other lifestyle changes also. I have not been able to tolerate any other meds.

I have heard and read they can be hard on the stomach but everyone is different so I guess it depends on how someone reacts to the medication.

Plus I am in menopause so everything is very out of whack right now so to say that it is the medication would be unfair.

Hi Sarah,

With the benzos generally tolerance ONLY occurs to the euphoric and sedative effects but tolerance to the therapeutic effect is basically non-existent. This is the main reason that docs like to prescribe clonazepam over valium, for example, because clonazepam does not produce a euphoric effect and patients will not want more and more to get that euphoric feeling.

Lisa

Hi Lisa,

Interesting info on this. I didn’t know that and was under the assumption that it would lose its effectiveness over time across the board. While the benzos do take the sting out of migraine events for me, they don’t prevent the actual events themselves from happening or allow me to grow “taller in the pool” as Rauch puts it.

I’m giving Paxil another shot with more determination than ever. I feel horrendous at work today :shock: on it but I’m off on holidays as of Thursday so maybe I can adjust to this stuff this time. This migraine brain of mine hates when anything rocks the boat and throws all of the toys out of the pram when a new drug is added.

Scott

Thank you Lisa for that thoughtful response!
Scott, for me, they don’t necessarily prevent the migraines either. However it does take away a lot of the disequilibrium, tilting and rocking sensations on a daily basis. Unless of course I do something silly like shopping, or a long walk, or exercise even… then I’m SOL!
Right know I’m taking ativan, after this runs out, I think I will talk to my Dr. about clonazepam.
Sarah

Hey Scott,
I wish you all the best with Paxil… you never know until you try.
With regards to the benzo, I hear what you are saying, but have you ever had a trial of taking a benzo every day at a therapeutic level? I would definitely see clonazepam as a better choice than valium for this use. Just a thought my friend…
Have a great holiday… Too bad I am bedridden more than I would like or I’d be meeting up with you and Howie during your NY tour…lol.
Keep us posted with the Paxil!
Lisa

I must respectfully disagree as I developed a very bad tolerance to Ativan and Clonazepam did nothing for me. Ativan was like a wonder drug for me, it stopped the rocking almost to nothing but wore off in two hours with an awful rebound effect. I tried taking more, more often but once tolerance happened, it happened. It only took 4 months. Then I was switched to Clonzepam which stopped working at all, more, less, nothing but more wobbles.

I have never had an addictive personality, never took any meds except aspirin, drank only occasionally…

It is a very personal thing. I switched to Valium and it took me two years to wean off of less than 1 milligram of Clonazepam. My PA said “We are in that business of putting people the meds, not taking them off.”

I am not saying they won’t help some but I never got “high or euphoric” on any benzo but my body still became tolerant. Now, if I take a Valium to calm down it does nothing. Being addictive and being tolerant are very different things.

What works for one does not work for all so Clonzepam may be a long term solution for you. If they worked long term for me, I would still be on them, no questions asked. I thought I had my life back with Ativan.

Best of luck,
Sal

Hey Sally,
I am sorry for your experience with the benzos. I did not mean to state what I said as a hard and fast rule. Everyone is different and I thank you for sharing your experience. It must have been so frustrating to think you found a solution to this illness only to have it stop working. I hope I did not offend you and am very glad that you shared your personal experience with us. That’s what makes this forum so great.

I wish you the best. I only want for us to maximize any and all meds available until we find something that gives us relief.

I hope you and everyone else find something that brings us back to health.

Warmest,
Lisa

Such an interesting conversation about the benzos. I hadn’t realized that they might help us, until I saw one doctor whose take was that the constant migraines cause vestibular damage, and he felt like Klonopin would help with compensation. I took it for a short time on a low dose. Unfortunately, if only made me tired (I even took it at night and was sedated the next day) and I had a terrible time getting off of it. Not to scare anyone - I am super sensitive and everyone is so different. Subsequently, I saw Dr. Buchhotlz (author of heal your headache) who said that it is terrible to say that migraines causes vestibular injury. He said that it isn’t true at all, and not to think that way or you will feel like you will never get better. And, he disagreed with the use of benzos for this. So, I don’t know what to think. But, why not give it a try I say - if it works who cares why or how. But, I believe that people with regular migraines are not given benzo, so why would benzos help us if this is indeed all a migraine? so confusing.

It is a very interesting conversation indeed. One of my doctors recommends the clonzepan which is the one my mother became very addicted to so I was not willing to try that one at all.

The reason I use the valium is I had to have another procedure very shortly after this hit me last year and they gave me one before the procedure and it was the first time I was the least bit normal in more than six months so I ask my GP for a low dose and she gave it to me. But with that said I will not up the dose daily and only take more if I have something unusual going on…ie I had to have three teeth pulled a month ago and took an additional dose prior to that procedure.

I think the doctors have a conflicting view point on whether or not it is beneficial and I think it has to be a personal decesion for each one of us as to whether we want to go that route or not. I will for now continue to take my very low dose in hopes that one day I will not need it but it may be something in my genes. My brother takes a daily dose of Klonopin and has for years without any ill effects to this point…my mother did not use it that way and her tolerance level was different.

My Dad has migraines and has been able to handle them through natural means …ie, food choices, lifestyle changes and supplements. So what works for one may not work for another.

But I refuse to believe there is no way to make this stuff better I just hope each one of us find “whatever it is” that makes our lives worth living and gets us to a point where we can enjoy each day and live it to the fullest.

I still take Valium and clonazepam. I have buildt up a tolerance to the theaputic effect as when I first started taking it 1mg was enough to stop things from moving. Now it takes 5mg and that dosage puts me to sleep more than it helps with the dizzies, so I don’t take it very often anymore. I still take the clonazepam with the only change going from .5mg to 1mg. I take it nightly for my daily headaches and tooth grinding and it is still helping with both.

I would have to say that from what people have posted on this thread and my own experience that it depends on the med, and the persons body chemistry. We are all different, and react differently to different meds after all.

Brian

— Begin quote from "Brian B"

I still take Valium and clonazepam. I have buildt up a tolerance to the theaputic effect as when I first started taking it 1mg was enough to stop things from moving. Now it takes 5mg and that dosage puts me to sleep more than it helps with the dizzies, so I don’t take it very often anymore. I still take the clonazepam with the only change going from .5mg to 1mg. I take it nightly for my daily headaches and tooth grinding and it is still helping with both.

I would have to say that from what people have posted on this thread and my own experience that it depends on the med, and the persons body chemistry. We are all different, and react differently to different meds after all.

Brian

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How long did it take you to build up a tolerance? Also, the clonazepam you are taking now, does it help at all with your dizziness?
Sarah

Hi all,
I think the problem all of us are having is that there are not any approved drugs to treat MAV, nor is MAV even recognized as an official diagnosis like Migraine headaches, hypertension, diabetes, etc. So, I think the reason docs have different opinions of meds is that the mechanism of action causing these symptoms is so different in each of us that it is hard to predict what will work. Dr. Newman uses clonazepam for MAV, Dr. Furman uses clonazepam for MAV, and I even had a conversation with Dr. Rauch and I asked him about clonazepam (keep in mind I was not his official patient, I was just speaking to him as a colleague) and he told me in some people he goes up to 0.5 mg 3x/day with clonazepam. I’m not sure if these docs use it solely or as an adjunct to other meds. It’s basically whatever will work for the patient with this condition I am discovering in speaking to docs and reading our posts. Yes, there are the standard meds that each doc uses as first line… Hain likes Topamax and Effexor, Rauch likes nortriptyline, Furman likes zoloft, Newman likes verapamil and zoloft, etc, but when patients don’t respond to these they start trying others until they hopefully succeed. And, the only way we will know what will work regardless of others success is to try it ourselves, to see that we can tolerate it, and to see it lessen our symptoms. What a horrible and frustrating diagnosis for both patient and doctor! I wish it were so much simpler and we all just took X or Y med and got better…

I wish everyone the best in their search for the med that works for them. I am still on my verapamil trial under Dr. Newman’s care…

Best,
Lisa

Nicely stated, Lisa.

I hope I did not offend you and am very glad that you shared your personal experience with us. That’s what makes this forum so great.

Lisa,
Absolutely, not. You did not offend me at all, I value your input and expertise. We just have to share and hope for a med that helps the majority of us. This is no life for the wonderful caring people who frequent this forum. It breaks my heart.

Keep up as best you can.
Sally

Sarah,

Benzos are the only medication that has given me enough relief so i can work part-time, got to a movie or grocery store, etc. Without this type of medication i would be home bound. I tried numerous anti-depressants over the years and other medication to no avail. The benzo decreases the rocking motion and irritability. When i first started on Xanax a number of years ago I was on a higher dosage…so when I began to wean down I will be the first to admit it was not easy. It took me nearly 3 years to reduce from nearly 7 pills per day day to one pill per day (0.5 mg). The last 7 years I have only been taking one tablet per day and it’s the lowest strength you can purchase (0.25 mg). The last couple of months I have reduce once again… down to 2/3 from 3/4 pill. I also take Verapamil and that gives me some help too. For me…it’s all about Quality of Life.

Joe

Joe, do you take the Verapamil as a preventative along with the benzo med? I was on it years ago as a preventative but I had nasty side effects, I just don’t remember what. I was only in high school at the time.