my brain fog and de-realizatoin and vision got a lot better after i found out it was caused by benzo tolerance withdrawal,
if you notice your better days come after upping the benzo a little bit you might want to look into it.
getting off them is really tough and you must go slow getting off of them as cold turkey withdrawal is very dangerous.
i wish i new a year ago how much the benzos were holding me back and contributing to my symptoms.
i had a big up tick in symptoms when i weaned off them but now they are a lot better, so is my head fog, de-real,vision is sharper than its been in a year, and after 2 months off all the benzos
my blood work got a lot better also, my platelets went from 175 to 225 and my amalase for the first time in over a year came into normal range so my pancreas is very happy too.
and a lot of the other stuff that came on well into my Lyme treatment i now think might have been the benzos.
I am now thinking for me anyway looks like it was the benzos causing my worst symptoms after all.
posted
Good on you LSG Scott. There were many a time I wish I had a benzo to help me and was offered them many a time with my regular Dr. for my Fibro symptoms but I never wanted to be on them because I had little children to care for.
I held off and when finally diagnosed with lyme and was treated with lots of ups and downs I am finally free of all the things I would have taken a benzo for. I can sleep,not depressed and no unbearable anxiety anymore. It's wonderful.
On a side note my Dad had horrible side effects from Benzo's. He tried to go off them too quick and ended up in the Psy unit and ER. He's off now after 15 years being on them and he is so much better off without them.
I don't speak for everyone this was just my experience.
-------------------- Bart Henslea 1976 Fibro/CFS/arthritis 2004 Lyme diagnosed 2007 3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good. Posts: 647 | From NY | Registered: Dec 2007
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bcb1200
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Bravo Scott! Glad you are on the upswing!!
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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posted
great advice Benzos are very dangerous from what I understand. For what its worth though I can say that in a pinch ( and for someone with severe anxiety related to LD ) they can be a godsend.
For anyone taking them for anxiety / panic disorder I say ONLY take them when you feel you absolutely have to, and keep the dose small.
From everything I ve researched if you do that there should be little chance of addictions. Example I limit mine to not more than 1 mg of ativan a week, MAX, have no probs so far.
Posts: 72 | From chico, ca | Registered: May 2011
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posted
twingrl personally from all the research I ve done on it.. well maybe. I think a lot of it depends on how long youve been taking that much.
If you ve been taking that much and regularly for say 3 or 4 months or more then I imagine you could have a little trouble trying to quit. If its just been a little while probably not. Plus body chemistry etc all plays a part
Now I will say once again from my knowledge thats probably not enough to cause the really severe WD we all hear about. The seizures, psychosis ETC. More like anxiety, trouble sleeping and whatnot.
As someone who takes Ativan too I would say I know how easy it can be to fall back on, so if you can try going longer without it than normal. Or maybe just skip a dose here and there, anything to give your body a break from it would be good.
Finally if it happens that you have been taking it for a long time, defintely do not stop cold turkey, which most will tell you, that can be VERY bad.
Posts: 72 | From chico, ca | Registered: May 2011
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Hambone
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posted
I took .5mgs of Ativan daily for a little less than a year. After about the third week, it had it claws in me and I was already in trouble and getting sicker by the day.
In my experience, dose doesn't matter.
It's like thinking you can't get addicted to just a small dose of crack or a small dose of heroin.
The withdrawal was extremely severe and traumatic for me, even after switching to klonopin ( longer half life ) and water titrating that for 6 months. My withdrawal could've been so severe, though, because I had Lyme and didn't know it. But I still felt better getting off that stuff.
I know some people take it for severe medical conditions and have no choice. My grandmother takes Coumadin and feels like crud on it, but she needs it. I think if it's a terrible medical condition, you do what you have to do.
( side note....I don't think people on benzos have typical "addictions" as in they crave the drug like you see on tv. They are physically dependent and need it for their brain to function properly since the drug down-regulates Gaba receptors ).
Posts: 1142 | From South | Registered: Dec 2010
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Hambone
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quote:Originally posted by randibear: ummm, what's a benzo? i'm on elevil but it's only 10 mg at night to help me sleep.
Xanax, Ativan, Klonopin, Valium, Librium
Elavil isn't a benzo. Posts: 1142 | From South | Registered: Dec 2010
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below is a good site and Q and A explanation of Benzo tolerance Withdrawal and is how a small regular dose can screw you up and add to your symptoms list.
that's what happened to me. so if any brand new symptoms pop up like a herx that wont end and you are on a steady benzo dose and if your symptoms get better if you up the benzo it a good chance it's benzo tolerance withdrawal adding to your poor health
I haven't even started to taper off my benzo, but I already have symptoms. What's going on?
You are most likely beginning to feel the effects of "tolerance withdrawal". Tolerance withdrawal occurs because your body is requiring more of the drug in order to achieve the same effect. If you don't increase your dose to compensate for the changes, you begin to have symptoms of withdrawal without even starting to taper off.
posted
Ok then once again I am a goner!!! I had radical brain surgery that damaged my balance nerve in 1979. I was in a constant state of vertigo with no way to repair it.
Finally they combined xanax with the meclizine about 15 years ago and I have had to take it ever since then. After almost 15 big time doctors, neuros, and now my LLMD who cannot imagine this surgery was every done. They have all told me that I need to stay on the xanax "Everyday" or my life is in bed spinning forever.
I have read these forums and tried weaning down. I take 2mgs a day (they all want 4mgs) and I suffer more from reading all these withdrawal things more than my horrible surgery. I was just told again by Dr R (he yelled actually) to stop listening. He said if he had this radical a surgery and was offered a med that could give him back some form of a life, he would take it without question.
THen he yelled at me to go ahead and stop the meds...go to a withdrawal clinic, and when I spend my life spinning and vomiting, not being able to walk again...see which life I chose.
I felt better about myself after talking to him again and my hubby agreed with him...but now I feel awful once again and seceretly gonna start stopping them again. I am sure my body need the medication and will have severe anxiety stopping it, but if you guys say my mind will feel better, I am game to do it.
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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posted
I did some reading last night and I'm convinced I need to get off this stuff. I've been taking this dose for over a year and I am definatly more brain fogged when I don't take it.
I'm going off very slowly like the articles say. I'm in no rush. Even if it takes months.
-------------------- dar Posts: 95 | From michigan | Registered: Sep 2007
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Hambone
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posted
quote:Originally posted by annier1071: Ok then once again I am a goner!!!
Annier you're not a goner. You needed it because of your extreme circumstance. You seem to be one of those who do well with this stuff.
You were put on it for reasons beyond what any of us can imagine. I'm sure if I were in your shoes, I'd be on it, too.
Posts: 1142 | From South | Registered: Dec 2010
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momindeep
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posted
I am with Hambone, Annier...I have an ex brother-in-law who had an extreme brain injury and is on a cupboard full of meds to give him some sort of quality of life...it is medications that none of us would touch with a ten foot pole, but for him it is a life-saver.
You have to weigh the consquences of quitting your meds...so what if you are addicted...really...if it means you can do your life, then I say bring it on...listen to your doctor.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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Hambone
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quote:Originally posted by momindeep: I am with Hambone, Annier...I have an ex brother-in-law who had an extreme brain injury and is on a cupboard full of meds to give him some sort of quality of life...it is medications that none of us would touch with a ten foot pole, but for him it is a life-saver.
You have to weigh the consquences of quitting your meds...so what if you are addicted...really...if it means you can do your life, then I say bring it on...listen to your doctor.
I agree!
And for what it's worth, people who take high dose steroids daily for medical conditions are physically dependent, too. They cannot just stop taking their meds either or they could truly die from shock. They have to wear medic alert bracelets.
I think people who take benzos daily should be required to wear these bracelets, as well.
Listen to your doctor. You have a medical condition that developed before you were put on benzos that we just cannnot fathom having to live with. If the vertigo started for unknown reasons AFTER you had been on benzos, it would be different.
Posts: 1142 | From South | Registered: Dec 2010
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posted
So what are the alternatives? Please don't tell me a "natural"...been there, done that, doesn't do squat. I've tried pharmaGABA, doesn't help either. How about something like Lexapro that is also indicated for anxiety, not just depression? I was on this almost two years ago, only 5 mg. a day, never reached the 10 mg. dose that was prescribed. Stayed on for four months and quit cold turkey with no problems. This was before my Lyme dx and before my anxiety was as bad as it is now. Should I reconsider taking this again?
Posts: 478 | From Third Coast | Registered: Feb 2011
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posted
Thats too bad the pharmaGABA natural dosent work for you, I was just about to post how thats the ONLY thing besides benzos that does work for me, albeit milder. I too tried the lexapro briefly and all it did was make me more anxious.
Speaking of the GABA Supps anyone hear anything in particular about it ? I ve been mildly concerned though less than about taking benzos. Mainly cause its adding more GABA than normal and thus could your body stop producing its own over time ?? Still seems safer than the pharm stuff
Posts: 72 | From chico, ca | Registered: May 2011
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posted
OMG I am so happy I came across this forum. I am on Klonopin(have been for 6 years) Started when I first got really bad Lyme and nobody could figure out what was wrong. Same with all of you. Soooo many doctors no answers. My primary care Dr. said I have depression and bad anxiety. Of course I was depressed I was sooo sick with NO answers. So my jerk Dr. put me on Klonopin. I was suffering from so much Vertigo ect...this drug worked calmed me down to the point of dealing with life until finding an answer. It slowed my nervous system down too where I could stay calm enough and not panic.
So finally I found out I had Lyme and Babesia. I stayed on Klonopin throughout treatment. It was the only thing that helped me.
Now on my 3rd LLMD...very well known one!! Only thing is he loves pushing benzo's and other meds to keep the nervous system at bay during treatment. I was doing pretty well 2 years ago then back to hell again.!!!! I have had to up my dose 3 times. Started out just to help calm me when needed. I am at the point that I wake up and CAN"T funtion at all until I take my pill....usually .5 mg will get me going..then mid day symptoms flare I take more...then at night take more..I usually take about 1mg and on really bad days 2mg. I break up my pills and just pop some here and there!! I had no idea what poison I am taking.
I am wonder if most of my damn neuro issues are this drug. When I feel the need to take it. I have strange feeling in my brain..migraines..feeling like I will have a seizure or something..Hard to explain! I feel like crying now. My Dr. just wants me to up the dose. I refuse!!!!! My prescription would allow me up to 3mg per day....NO way will I do that now that I know all this.
Sorry this is so long...I just feel maybe 5 or 6 years of this med may be the cause of so much for me. Now in the beginning of my Lyme I did not have issues with seizure feeling..twitching..sensitive to sound light, Numbness in my face all the time. Feeling like I am having a stroke!!! Now my brain is so messed up I can't think straight and literally walk in circles and forget what I am doing.!!! 2 years ago I was out dancing every weekend having fun with friends ect...That was after my first rounds of treatment. But I have been taking Klonopin throughout all this. Over the past year I have crashed and am very sick again.!! I can't sleep feel panicky!!! I can't even go watch my little girl do gymnastics or go to the store without overload to my brain and feeling like I am going to drop and have a seizure or faint! Now I know lyme can cause all this but how will I know.
Finally I have a very well known LLMD going to through hard treatments right now!
How the heck will I know if its the benzo or lyme. I will never know if I am actually better from the Lyme if I keep taking this crap wondering if its causing me some of these symptoms. My Dr. will flip if I want to come off it. I am pretty much planning to wean myself slowly but also scared of having a seizure or worse. What do I DO??????!!!!! I am so angry at my Primary Care doc for giving me this in the first place just to basically shut me up!
Posts: 79 | From Oxford,MA,01540 | Registered: Jul 2004
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Hambone
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posted
quote:Originally posted by Mishelly00: Now I know lyme can cause all this but how will I know.
I would venture to say you will know if you increase your dose and most, if not all, of your symptoms disappear. If Lyme is your main problem, a benzo will not make you feel better like that ( it will just take the edge off anxiety ). If the benzo is your main problem, it will make you feel close to normal until it wears off and you feel like hell again before it's time for your next dose. That's tolerance withdrawal.
Tolerance withdrawal and Lyme share many many of the same symptoms.
Posts: 1142 | From South | Registered: Dec 2010
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posted
mishelly i know it stinks not knowing whats what., but going off c/t or "cold turkey" stopping is too dangerous you need a very wery slow taper off under doctor supervision.
if your with a doctor that thinks this poison is good for you and your brain than find another Doctor
if you taper and have benzo withdrawal and get a big spike in what you think are your Lyme symptoms and all you did was taper down it could very well be the benzos
good luck
-------------------- LSG Scott Posts: 513 | From Boston, Cape Cod, Mass | Registered: Aug 2009
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Hambone
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quote:Originally posted by Mishelly00: I am so angry at my Primary Care doc for giving me this in the first place just to basically shut me up!
I hear ya. Back in 2001 I had a reactive Lyme test at Mayo Clinic and they never told me. They gave me Ativan and Zoloft instead, told me I was depressed, and sent me on my way.
Instead of giving me abx's and getting to the root of the problem 10 years ago, they set me up to get even sicker from Lyme AND gave me a nice fat benzo dependence on top of it all ( which cost me almost $10,000 out of pocket to get off, which is a whole other book I should write some day. ).
I am VERY angry at PCP's for doling this out like candy and just leaving you on it as if all your problems are mental. LLMD's on the other hand, see their patients truly suffering from Lyme and feel like they need to do something to help their patient get through treatment. I don't think they give it to people to shut them up like other doctors do. I think they do it because they know anything to take the edge off of suffering from Lyme is a kindness.
But you are right. How do you know when it's not the Lyme anymore and now the benzo is the problem?
Posts: 1142 | From South | Registered: Dec 2010
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posted
I can't handle benzos, anyway, in my constant battle with "hypersomnia."
I take 1/2 of a valium or any type of pill in this class, and at the lowest dosage, and I am groggy for days, lol.
The only time I took anything like that was after surgery, in December, because I was in the same position in the hospital bed for over 24 hours, and my body just could not relax, even with all the IV pain meds.
I finally gave in and accepted a shot of Lorazepam (sp?) and they also sent a few home with me, which I still have, lol
-------------------- Best Wishes,
Hope
"Hope is a good thing, maybe the best of things, and no good thing ever dies."
~~The Shawshank Redemption~~ Posts: 234 | From Minnesota | Registered: Dec 2010
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posted
I don't see any posts regarding alternatives. Anxiety is my worst symptom and it is unpleasant as hell. I avoid taking Ativan although it helps a ton. What are the alternatives other than natural remedies which don't help?
Posts: 478 | From Third Coast | Registered: Feb 2011
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posted
Omg Well I just don't know what to do or where to start..thanks for all this info! My Dr. I am seeing right now I can't stop seeing. I waited sooooo long and it has taken so much money and travel to see him. I can't say name but in DC. Most will know. I was on the Klonopin way before I saw him but they seem to love benzo's and other seizure meds and other stuff that just plain scared me. He is a genius with the lyme stuff but wants to put everyone on all these mind altering meds..LOL! I tried like 3 or 4 and well lets say stopped very fast. I was so messed up.
I had to wait for months until I was stable again to even start abx... They did at first prescribe Lorazepam..I think thats what its called instead of my Klonopin. So Ok I went and filled it..took it and WOW thought I was going to die 2 days later. I was shaking....anxiety...crying...dizzy and lightheaded so bad I couldn't stand! So I grabbed my Klonopin and took that. It settled it down. I thought well they are in the same family so I just switch. Well from the sounds of it I had a serious withdrawal starting. I thought is was the other med not working with me...hmmm so if that was the beginning of cold turkey quitting this crap I can see that it would kill someone!
So basically if I call my DR. and say I want off all benzos I am actually afraid they won't treat me. I WILL NEVER know what is what Lyme or Tolerance withdrawal if I stay on this. I am pretty much positive that a lot of the neuro brain stuff is the benzo now! I was told to up my dose. I just can't do that after seeing these videos and hearing what people say. For crying out loud someday I would love to have another child. It's bad enough I would have to be worried about the Lyme but now being hooked on drugs!
SO in your opinion's if it was you what would you do??? Should I try to wean very slowly off?? How do I do that. What kind of Dr. do I need to help me??? I have a 7 year old I need to be a good mommy too and I do have help from a very supportive man and has researched every last thing about the Lyme Disease and helps me so much. He read all this about the benzo and can't believe it! What has my Primary Care doc done to me.??? I can't go to him. He would laugh and say well your crazy just stay on it.LMAO!!!! It's been 5 years of this drug he handed me out like candy....I am so angry right now! I want the real me back! Even if its me sick from Lyme still...i will at least know its the Lyme and not this drug!
Sorry so long again. I guess I need to vent a bit also..LOL! So anyways LSG SCOTT how did you come off this and what kind of Dr. would I need to assist me with this???? Siggghhhh
Posts: 79 | From Oxford,MA,01540 | Registered: Jul 2004
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posted
koo a good Lyme treatment should fix your anxiety, if it has not it might be the benzo continuing it for you.
mishelly
i still feel some effects of withdrawal as i have only been all off and benzo free for 2.5 months
they are getting better and less intense but it may take me 6 months or more to lose them all
my w/d sx wax and wane and did get worse in W/D
I did a dry cut taper but i really did it way too fast i was lucky i didn't have a seizure or worse so be very careful and find a good doctor that knows about benzo withdrawal probably a nero path
posted
@ koo I think I talked to you on another site about the pharmaGABA , I take it that didnt work for you huh ?? Sorry to hear that, I wish I could think of any other alternatives but I cant right now..
Posts: 72 | From chico, ca | Registered: May 2011
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posted
Thank You LSG!!! I will def update with what happens....I am going to first figure out what dose I have been taking each day all together. Seeing I usually break pieces of my pills here and there depending on the day. I have been going up and down like a roller coaster with symptoms. I am sure the benzo level in my body is going up and down and causing this..!!! So I need to find my baseline to start with and then go down from there..I promise I will do this slowly..I HAVE TO! I hope I can do this....I will seek help from a Dr. Just need to find one. Thanks again Posts: 79 | From Oxford,MA,01540 | Registered: Jul 2004
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Benzos, klonopin in particular, have been very helpful for easing very intense CNS symptoms. When things have been at their worst, I have worked up to as many as 7-8 pills a day. And as they improved, I'd find myself tapering off, missing one dose here, another there, without a thought. Then, at some point I would just realize it had been several weeks since I'd had to take any. Zero. No effort. No thought.
I have done this up and down journey several times over the years without difficulty.
In my experience, it is clear when the CNS no longer needs the additional benzos, as the neuro symptoms ease in both intensity and frequency.
This thread, while well meaning, is very alarmist. It may scare a lot of patients off a medication that can be very helpful. Lyme patients are very sick people, with severely screwed up nervous systems, and any tool that can potentially help one through therapy, or just make life bearable, should not be discounted with scare tactics.
I am not disputing that benzos can be addictive, but I am saying that the effects of TBI's on the CNS are far worse.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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posted
nomoremusles you are in the minority or maybe they are having more of an affect on you than you realize as loss of muscle is a hugh benzo withdrawal symptom it was for me and is getting better now off them.
you might want to check it out
as with all of us here it is better to leave no stone unturned.
-------------------- LSG Scott Posts: 513 | From Boston, Cape Cod, Mass | Registered: Aug 2009
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posted
I was like nomoremuscles the first few times I was on benzos. When the anxiety went away, I just stopped taking them with no ill effects. I never took more than 2 mgs per day at any given time that I remember. I was on them over a year several times and had no problems stopping when the anxiety stopped.
This time around I've been on them for almost 2 years, but at a very low dose. Only 1/2 mg 5 to 6 times a week. But before I read this thread I had already noticed that I felt more brain fog on the days I didn't take a pill. I thought it must have been due to not sleeping as well because I didn't take a pill. But now I realize it is most likely due to dependancy.
So I've decided to wean myself off slowly and just use ativan only in cases of extreme stress and for short time periods to get me through it.
Everyone is different. Everyone will react to benzos differently. My husbands grandfather had terrible side effects from stopping benzos and he was only on a low dose and for a few weeks.
-------------------- dar Posts: 95 | From michigan | Registered: Sep 2007
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If you read carefully, you would have seen that I have come down to zero benzos many times without any trouble.
So please explain how that can be withdrawal?
Also, it might be a good idea to refrain from diagnosing others based on biases formed by your own experience. You have no idea why I've lost muscle mass.
You seem a bit anxious on this subject. Perhaps a klonopin would help. (Unturned stones, and all that.)
Posts: 845 | From Eastern USA | Registered: Jul 2006
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I was a bit upset over this forum also. I think only a few people really knwo the reasons many are on benzos. Not all cases are the same.
I was so scared I tried cutting my dose again today and felt my eyes going backwards again and had a major dizzy down to the floor again in front of my mom and family that came to visit.
They are so upset with me for not taking my medications. i was told that you need to keep them in your system consistently and not cutting pills in half and quarters like I do from a fear of addiction.
My LLMD told me that this is messing up my neuro system more than lyme and my surgery together. My system doesnt know hwat is happenign to it since I switch up the dosages all the time out of fear.
Its so hard not to listen and wonder but I guess I need to follow ALL my doctors orders and use the xanax to walk again.
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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posted
Nomoremus if you want to fight you will have to look elsewhere
that's not what i do
good luck and i hope you get to good health however you get there
-------------------- LSG Scott Posts: 513 | From Boston, Cape Cod, Mass | Registered: Aug 2009
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Hambone
Frequent Contributor (1K+ posts)
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posted
quote:Originally posted by Mishelly00: So basically if I call my DR. and say I want off all benzos I am actually afraid they won't treat me. I WILL NEVER know what is what Lyme or Tolerance withdrawal if I stay on this.
You really should talk to your doctor and say exactly what you said here. Ask him how many of his patients who recover from Lyme are able to discontinue the benzos AND stay off them without having to keep going back on them.
If he says all of them stop taking them with no problem once the Lyme is controlled, well, I would personally think he is lying, but hear him out and tell him your concerns. Ask him what happens when you have to keep up up up'ing your dose to control tolerance. What will he do if/when you reach the limit he's allowed to prescribe? Will he say no more raising the dose and leave you in tolerance?
This is a very real issue that needs to be discussed more. I like hearing positive stories from the other side and that it is completley possible to get off this class of drug once the disease is controlled.
I would hope there are people out there who will chime in who are well now, who used benzos long term during Lyme treatment and are now off them.
I did this whole thing backazzwards. I got off the benzo BEFORE Lyme treatment so I have no idea if going into remission makes it easier to taper. I saw how much worse I got on them, and then how much better I felt off them ( even though I was still Lymesick ). So it was very easy and clear to me what was causing what. I turned into a complete emotional nutcase on them.
But seriously, I think you should wait and talk to your doctor about it. He needs to know what you are doing. Go in armed with info and don't accept any BS talk and that it's nothing to be concerened about. If you are having a major rise in symptoms you never had before when you try to cut back, it answers a lot of questions.
Posts: 1142 | From South | Registered: Dec 2010
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posted
Ok so I wanted to take this time and point out how and when I belive benzos are a helpful and useful item. Just a couple hours ago at the market in my case.
I was feeling slightly jittery upon heading in to shop, nothing new since lyme and I probably didnt eat enough earlier, after about 5 minutes boom full blown panic attack. I almost fainted a couple times trying to get outside.
Then I did briefly upon getting into my car, sat there for a few minutes debating and upon thinking about the 20 minute drive back home, took some ativan. Now mind you I took just the smallest amount possible .25 mg.
This is my point about how I try and use it as responsible as possible, there is no way in hell I could have made that drive otherwise, not with going in and out of conciousness like that. Also for what its worth thats the first one I ve had in about 10 days.
Like I said doseage is important, and .25 mg in 10 days is miniscule, even 1 mg is for that matter. Once again I dont disagree for a second that they can be super dangerous and addictive, I also sympathize that they can be very easy to fall back on, and thats where dependence starts IMO.
Posts: 72 | From chico, ca | Registered: May 2011
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posted
Gryphon your not getting what withdrawal is or what were saying about it
how do you know you didn't have the panic attack from benzo withdrawal, what were saying is you don't know, also it is piece meal dosing that causes tolorence withdrawal the most and you were off it for 10 days
were just saying that as the years go by and your not getting any better and new symtoms pop up you might want to look into it.
-------------------- LSG Scott Posts: 513 | From Boston, Cape Cod, Mass | Registered: Aug 2009
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posted
Scott all I m saying is that anxiety was my first symptom of LD and has been with me the whole time. Well before I ever even heard of a benzo. I ve been in treatment ( still am ) and thats the one symptom I cant shake.
Earlier this year I went almost 2 months in between these small doses with very minimal anxiety and then boom needed it again, my point is I see no way on earth that one could experience tolerance issues from such tiny amounts
Tolerance to any drug, alcohol etc comes with time, and regularity of use hence the term tolerance, your body gets used to it. So I m not really sure where you got the idea that piece meal causes tolerance ? If I where using these daily for months or years then I would totally agree with your view.
Also Id like to point out, halflife plays a big part too, in a drug like ativan halflife is 10-20 hours. Assuming I had ( and I did ) .25mg of ativan 10 days ago, and given a worst case elimanation of 20 hours per half life. Then I had .000061 mg of it remaining in me today. I m thinking WD issues would have set in a little sooner than that.
On a side note Id really like to know if anyone has any alternatives, I have the one that works ( sometimes ) But the point seems to be missed that for some of us, this anxiety is truly debilitating and benzos are sometimes the only thing that works.
PS I m not trying to pick any fight here, just trying to present a balanced view on this subject.
[ 05-23-2011, 12:16 AM: Message edited by: gryphon78 ]
Posts: 72 | From chico, ca | Registered: May 2011
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L-theanine works pretty well for some people, approx 2 caps on empty stomach (but some have GI troubles here).
Glycine works too. From memory, 1/2 - 1 g. was a good dose to start with, though some may need more.
Some people seem to have excellent results with these, others get little or nothing out of them.
But as to your benzo dosing, from what you have described it is VERY unlikely that you are having any addictive problems.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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posted
Thanks nomore I ll look into the glycine, already tried the theanine with no luck, though i wasnt taking as much as you mention. Maybe need to try again.
And thank you for the support on my benzo dosing example, I ve just been trying to point out that it should be fairly safe at small doses. In fact in all I ve read on it, the killer for most folks seems to be regular / daily usage regardless of the dose size.
Posts: 72 | From chico, ca | Registered: May 2011
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posted
I really wish I did stick with a very small dose and just take it in emergency. I was not dependent on it at all before. I just took it when i needed. I was prescribed this to take daily for sleep I think at first. I can't even remember. I had PVC's and vertigo sooo bad when I didn't know I had Lyme and just plain old sick.Couldn't drive for over a year... This was the way my Dr. wanted to shut me up. I was seeing him so much with different symptoms so he assumed I had a panic attack problem or I was just crazy. I noticed it was helping me so much for a while so I started taking it more and more.
Gryphon just like you I can't go to a store...well its pretty much all the time for me. I have been taken out by ambulance. I will be perfectly fine but all the sounds lighting and people make me disorientated. The thing is now I depend on this med just to go to the store or go see my daughters gymnastics....family parties. It's crazy!!! I hate it. I noticed though that I have been doing this for a long time. Years!!! Now I am soooo much worse than I ever was. If I don't take my Klonopin I am a zombie and get the scariest sensations ever. I really just don't know where to go from here. I am going to take them 3 times a day at a set dose for a bit and no more than that. I need to see what dose is even working for me if at all. Being told to take 1/4 to 1 full pill 3 times a day has made me nutty......I have followed those directions and well I have been so up and down with symptoms.
The other day I had such a terrible day. I think I took some like 5 times out of fear of having a seizure or something. Just a strange feeling of burning tingling and numbness in my brain and face!! Hard to explain. When I get like that I am literally walking in circles. Can't think. Putting stuff in strange places..I lose my temper at stupid things because I feel like I am losing my mind.!! So I took extra!!!
The next day I barely took any. I was doing yard work for like 9 hours straight with a clear mind ect...All I had taken that day was .5 MG in the morning. Now I don't know if that was because I took so much the night before because I was feeling so scary!? I have never been like this even through my strongest Lyme treatment.
Because I was feeling so good for a while a couple years ago and out doing a lot and the fact that I have crashed and feel so much worse now makes me wonder what is going on. My brain just feels so messed up..I am so dependent on my benzo...I take it all the time now before doing most things just to avoid another ER visit. I guess I need to figure out what dose I am really taking per day...I am going to keep track and figure out symptoms ect. I just know I have never been dependent on anything and I don't like the thought of this being like a street drug with terrible withdrawals and not letting my brain heal too. I have read so many stories about this med and terrible ones...I know that people don't usually write good stuff online but there are just wayyyyyy to many to ignore. People who were given this for stuff other than Neuro issues or Lyme are now having completely the same strange symptoms as me!! Some take years to come off this crap and feel sooo much better but suffer terribly during the process of stopping. People that have been in accidents or many none BRAIN related things but given benzos for a calming effect or sleep ect....now having seizures and panic attacks that never had them before going on these. That def makes me wonder what is going on up in my brain. If I still have one..LOL!
Posts: 79 | From Oxford,MA,01540 | Registered: Jul 2004
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thats what i have been saying look into it and check it i think that's great that you are at least open to it
i don't understand why some Lyme folks of all people, can't wrap their head around, maybe they have been lied to by big pharma for money.
i don't have any axe to grind here and this is the last i will post about this here i don't need to be put down and attacked.
i don't know how these people were ever convinced they had Lyme,
i wonder if they attacked the people that told them "you might want to look into this Lyme thing"
i will just leave you with this-
"well just remember what we talked about and keep it in the back of your mind an be on the look out for it"
Sound familiar Lymies
God bless
-------------------- LSG Scott Posts: 513 | From Boston, Cape Cod, Mass | Registered: Aug 2009
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Thanks for the info.. But I have found that benzo's have been great for me. I take a small dose and will continue to take them as needed. We all are different.
I am afraid of all drugs and have seen benzo's destroy some and help others.
All meds are dangerous.
Posts: 1058 | From VA | Registered: Oct 2010
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-------------------- LSG Scott Posts: 513 | From Boston, Cape Cod, Mass | Registered: Aug 2009
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philly78
Frequent Contributor (1K+ posts)
Member # 31069
posted
quote:Originally posted by koo: I don't see any posts regarding alternatives. Anxiety is my worst symptom and it is unpleasant as hell. I avoid taking Ativan although it helps a ton. What are the alternatives other than natural remedies which don't help?
It is my worst symptom as well. I was having multiple panic attacks every day.
I tried xanax but took myself off that fairly quickly....about a week into it because the rebound anxiety was just too much to handle.
I tried Klonopin and all that did was knock me out. Was on valium for a bit and it helped but I didn't want to stay on it for too long.
Ideally, benzos should only be prescribed short term....roughly 6 weeks. But we all know that that isn't always the case. Some people need the pills longer term. But the problem with benzos for some people, is the more you take, the more you need. I have a family member who was up to 10 mg of Ativan per day. She was a mess but has since gotten off them. Took a few months to do as well.
I would say...if nothing else is working then it is okay to stay on the benzos but to proceed with caution.
As for natural alternatives, I have been taking Mukta Vati. It helps with the anxiety but one thing I have to look out for is hypotension as it also lowers the blood pressure and I tend to run a bit on the low side of normal. Ive been okay though and it does appear to be helping me.
I have also been in therapy since last October...prior to be diagnosed with lyme. I must say that this has helped me tremendously. I don't do cognitive behavioral therapy though...which is what many therapists do. I do ACT....acceptance and commitment therapy. I do think it has made a difference. I haven't had a panic attack in over two months and I was basically living in a constant state of panic prior.
Here is some info on the mukta vati if you're interested.
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
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philly78
Frequent Contributor (1K+ posts)
Member # 31069
posted
quote:Originally posted by nomoremuscles: LSG,
If you read carefully, you would have seen that I have come down to zero benzos many times without any trouble.
So please explain how that can be withdrawal?
Also, it might be a good idea to refrain from diagnosing others based on biases formed by your own experience. You have no idea why I've lost muscle mass.
You seem a bit anxious on this subject. Perhaps a klonopin would help. (Unturned stones, and all that.)
Not everyone will have problems with the benzos and they do help or are needed for some people. I have a coworker who has been on benzos for 10 years with no problems at all. One would never even know she was on them.
However, this is not always the case and docs do not often educate people on the possible dangers of these meds.
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
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posted
Shelly, Sorry to hear your stuck where you are, hoping your detox / weaning goes well. Its scary really with these things cause the docs dnt really give you much warning about the addictiveness, had to educate myself. I can understand with the stores thing. Personally I think its something about the fluorescent lighting sets me off
Scott I m not sure why you think the handful of us merely pointing out that there are uses for these drugs. Are somehow attacking you, as I said in my last post I wasnt looking for a fight just presenting both sides.
You are the one that seems to be on the attack, by being viruently opposed to anyones opinion but your own, and by telling those of us who do (occasionally) use this drug we're basically idiots.
For your information I do not support or trust big pharma, and I do try to treat as naturally as I can, as I ve said in several posts already. And I did in fact get my LD diagnoses started myself, with the help of several friends, I m one of the least close minded people you could meet. Unfortunately pharma makes something that helps me when I need it.
Several times now myself and several others have asked for any thoughts on alternatives since I would love to never take a benzo again. Unfortuantely that thought has gone mostly unanswered in favor of more benzo bashing.
Once again I didnt come here looking for a fight or to attack anybody, I m hoping from here on out someone can add to this post with some more useful information.
PS thanks to Philly for that helpful info on the CBT etc.
Posts: 72 | From chico, ca | Registered: May 2011
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
I have just recently discovered what 9 years of klonopin has done to me.
I didn't realize why I was feeling so awful these past few months, terrible anxiety, nervousness, fear of gloom and doom were a result of my becoming tolerant to the klonopin.
The md just prescribed it along with an anti-depressant and said it was safe! I really didn't even need it. It just helped me sleep better. I would have done just as well on benadryl. I could ring his neck for this. I am now addicted and had no clue.
Now I know and am determined to get off this stuff. I am terrified at the possibilities. Not trying to scare anyone, but just sharing my feelings.
If anyone out there can share how they got off, or an educated md that can help, I would appreciate a pm.
I look at these pills now as poison, not something that helps me.
I just want to be free of them.
Take care and God bless.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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posted
ok but no cold turkey as it is too dangerous try and find a benzo knowledgeable nuro path to help yyou get off them
-------------------- LSG Scott Posts: 513 | From Boston, Cape Cod, Mass | Registered: Aug 2009
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
Thanks Scott, You are right about that. I forgot them on a trip once and got chest pain and palpitations. Scared me to death. No cold turkey for me!
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
Something puzzles me about the tolerance issue.
It was originally for use for epilepsy. Those people really have no choice, but to take it and are having to use it for life.
I know people who are on antiepileptic drugs, although I'm not sure if they're on benzos. eg. dilantin is not a benzo.
They have been on them for decades at the same dose and don't have an anxiety issue.
Does their body respond differently because it's "needed"?
I don't mean this as a challenge to contradict what's said here. I'm just wondering.
Posts: 1297 | From USA | Registered: Dec 2002
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mojo
Frequent Contributor (1K+ posts)
Member # 9309
posted
I can increase and rapidly decrease my dose when I need to, as well with no bad results. When I don't need it as much I take less (sometimes half) and do OK. My dose has only been high for short periods of time( several months) though - perhaps that makes a difference.
When I'm having a lot of anxiety the benzo's don't even make me "zoned" out. I just feel normal. When they feel bad I reduce the dose because my body is telling me I don't need it.
NOW - when it's time for me to go off my normal dose of 1mg Ativan at night I'm quite sure I'll have to wean off. I have taken only 1/2 for several nights and did ok.
quote:Originally posted by nomoremuscles: I have found just the opposite to be true.
Benzos, klonopin in particular, have been very helpful for easing very intense CNS symptoms. When things have been at their worst, I have worked up to as many as 7-8 pills a day. And as they improved, I'd find myself tapering off, missing one dose here, another there, without a thought. Then, at some point I would just realize it had been several weeks since I'd had to take any. Zero. No effort. No thought.
I have done this up and down journey several times over the years without difficulty.
In my experience, it is clear when the CNS no longer needs the additional benzos, as the neuro symptoms ease in both intensity and frequency.
This thread, while well meaning, is very alarmist. It may scare a lot of patients off a medication that can be very helpful. Lyme patients are very sick people, with severely screwed up nervous systems, and any tool that can potentially help one through therapy, or just make life bearable, should not be discounted with scare tactics.
I am not disputing that benzos can be addictive, but I am saying that the effects of TBI's on the CNS are far worse.
posted
wow havent been here in a bit and cannot believe this post is still going. It can really hit home and scare you into thinking you medication was given to you without regard for your health and now you are and addict!
I am on xanax, as I said before, to keep my inner ear balance due to a radical head surgery 31 years ago. I have been on the medication for about 15 years now. I have never upped my dose. Although they wanted me on 4mgs a day, I have kept it to 2mgs. I only upped it once when I have a horrible herx from rifampin and my LLMD demanded that I do it before I had a stroke.
I think we are looking at two different scenarios. some people have illnesses that require the medication. We do not get loopy from it nor require higher doses. We just get normal and able to function in our daily lives. This has been explained to me at least ten times by all my doctors when I mention these posts about addiction.
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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I feel like crying now. My Dr. just wants me to up the dose. I refuse!!!!! My prescription would allow me up to 3mg per day....NO way will I do that now that I know all this.![[shake]](graemlins/shake.gif)
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