I've never tolerated even tiny amounts of benzos but their point is well taken that withdrawal can be torture.
I think, though, it depends on WHY someone needs benzos as to how hard withdrawal can be. Many without lyme are on much larger benzo doses than a lyme patient would be for neuro calming or for pain management.
Some with lyme just can't tolerate benzos, though, even in tiny doses. Magnesium and Fish Oil help me more than any benzo ever could to calm the NMDA excitatory neurotransmitters and give the GABA a chance.
Also, I think support supplements to help the body work better can help those who will later ease off benzos. For this person, it may be that the MSG is the bigger problem right now.
Several there seem to think it's normal and okay to have MSG added to foods. They may not even make a connection in symptoms with MSG. It's not good for anyone, ever.
But, for anyone with any kind of physical issue, it just seems unusual to be ignoring the neurotoxic effects of MSG and not considering how that can be part of the symptoms for which they are prescribed benzos. (MSG overly excites; benzos calm.)
My bet is their doctors never even address the need of MSG avoidance. I wonder if they've seen Russell Blaylock book: The Taste that Kills -
Posted by sk8ter (Member # 8671) on :
It is the only thing that takes the nerve pain away...I take it .5mg every other day or every other other day as it has a 36 hr half life....I was on it 25 years ago when all this started everyday 1.5 mg ...I got off of it then in about 3 months...no issues...
Posted by nomoremuscles (Member # 9560) on :
Klonopin has been very helpful to me over the years.
Posted by jwall (Member # 22999) on :
Klonopin nearly killed me when I tried to come off it and I feel like it's done damage that may be permanent - 3 years later I am dealing with symptoms I did not have originally with lyme and I attribute those to klonopin. Hate the benzos, however when I first became really ill, it was the only drug to help ever so slightly.
I did not like the zombie-like feeling and the inability to feel real emotions while on it among many other things. I was on a baby dose.
Everyone is different. Some are more sensitive to benzos than others. I think one is taking a gamble when taking them.
Posted by bv (Member # 9578) on :
What is "MSG"? I have been taking temazepam for 5 years---30 mg @ bedtime---its takes away the horrible burning skin and I sleep 8 1/2 hours a night. I only take it @ bedtime. Before I started temazepam, i would wake up at 3:00 AM every night. My Doc says the disturbed sleep is one of the many LD symptoms.
Posted by Keebler (Member # 12673) on :
- MSG is Monosodium glutamate, a toxic food additive. It also goes by many other names you can find with a search at Google, when checking labels to be sure you are avoiding it.
Not only is it toxic to nerve cells, causes irritation and agitation, it's very addictive so that we crave it. That's why it's in so many processed foods, to keep us coming back.
I think it also has a lot to do with obesity. It's a drug that's hard to beat. "Bet you can't eat just one?" Probably because of MSG. -
Posted by nonna05 (Member # 33557) on :
what benzo has a 36 hour half life/
Posted by nonna05 (Member # 33557) on :
This is one more thing to be concerned about..The doc. almost any of them have had me on valium since winter of 06. First to help with crying jags. All H--- broke loose in my life. Lots of loses in my life and then my first hospital bought with this undiagnosed illness
I asked several times if this was the right thing to do. Told yes and was small dose. , then .5mg as needed about 3 a day.
Then they had me on Rifampin and that lowered it's value, so put me on 10mg.as needed up to 3... Now off Rifampin but no change on other as the muscle spasms started @ year ago.. so I try to bite in half ,doesn't work well often.
So each day is started with a val. and a vicodin wait 20 min,. then I can try to start moving.
Must say before I got sicker last year after the steroid shots , I didn't feel slower or brain fog.
That seems to have happened in a bad way since then. Some days I hold back a bit . But I recently had more loses and am trying to fight this ,now that it has a name.
I'm finding out on this site how many other things I could/should have been doing .
Of course I'm in a hopeful/but frustrated state now that the med are different. But there's so much more to it and I barley had the energy to do what I was trying before... Am Lost at this moment.
Posted by LSG Scott (Member # 21624) on :
if you look up benzo info on line it clearly states that a benzo should only be taken short term and no longer than 6 weeks, and if you don't believe me, well then, hey your on a computer LOOK IT UP, so if that is the mainstream thinking and warning about taking them long term, then what makes you or your doctor think it's fine to continuously down grade the gaba receptors in your brain? this stuff is very bad stuff to be on long term, it will catch up with you, and if you enter tolerance withdrawal it could mistakenly keep you in Lyme treatment for years, as it shares a lot of the same lyme symptoms, so it's best to avoid the confusion and get off the benzos just make sure you tapper off properly as going off cold turkey is dangerous,
good luck and god bless
"call on me in you times of trouble, and I will rescue you, and you will give me glory." (Psalm 50:15)
Posted by Marz (Member # 3446) on :
I'm wondering why our LLMDs are so willing to rx these.
In 2006 after my first appt, mine wrote a rx for clonazepam and I was afraid to get it filled, so it expired after a year.
A couple of years ago I read here that it is neuroprotective, so decided to try it.
I've found that when I'm going through a tough time and I take .5 to 1 mg plus 1/2 ambien before bed, I wake up with so much less pain and am able to face the stressful thing I took it for that day.
At the most, I take .25 before bed for a couple of weeks.
Is this a safe way to "use" it? And I just hate the connotation of the word use. I really do fear becoming dependent.
Posted by Haley (Member # 22008) on :
My hunch is if you use them everyday for any period of time your body will become dependent eventually. At first it will be 2 weeks and then you will need them more and more.
Posted by LSG Scott (Member # 21624) on :
they want to desensitize you so you will stop with the panic calls to the LLMD every other day and if your a new patient they want to nip it in the bud
Posted by LSG Scott (Member # 21624) on :
if you have had new symptoms crop up during treatment and while you were on benzos and when you up your benzos or recently take it and it makes those symptoms feel better, then you may very well already be in benzo tolerance withdrawal benzos make you feel better but it is a false better, i know, i lived it. Please people just like Lyme, you need to be your own advocate and do your own research
Posted by seibertneurolyme (Member # 6416) on :
The way I see it is that every med has side effects. In order to tolerate treatment some people end up on benzos or SSRI's or painkillers etc etc.
The important thing to remember and work towards is to decrease your symptom meds as you treat the infections. It is a balancing act to control symptoms enough so that a person can function reasonably well until the antibiotics or malaria meds or killing herbs do their job.
Some docs and some patients are better at phasing in or phasing out symptom control meds. But ultimately it is up to the patient to decide which meds they feel comfortable taking.
Hubby has been in many ER situations where the first thing docs want to try is 1 or 2 mg of IV ativan. And yes, I gave him that med for several years multiple times daily to control seizure like episodes. We tried probably a dozen diferent seizure control meds and none of them worked as well as the ativan.
Hubby is not off this med yet but has recently decreased his dose over the last couple of months -- it will probably be another 4 or 5 months before he stops the med if he has no crashes in the meantime. But since we aggressively treated bartonella he no longer has the same type of seizure like episodes.
He does have some parkinsonian tremors and myoclonus and other movement disorder symptoms that act up if the babesia meds are not working so for now the ativan helps with those type of symptoms plus the dry heaves also caused by the babesia or whatever blood borne parasite he has.
For hubby passionflower extract and kava kava work better than gaba supplements to increase gaba and help him sleep.
This is not medical advice,just my opinion based on hubby's experiences.
Posted by linky123 (Member # 19974) on :
The md that prescibed the klonopin explained to me why it was 'safe' - the half-life being longer than other drugs in its class etc. That was why it was the only benzo his practice prescribed.
I really didn't need it for anxiety or anything like that. I just went in for help with depression and he put me on it. I trusted him. I shouldn't have.
It did help me sleep, which as we know, is a major issue with lyme.
I took the stuff for nine years and never knew how addicting it was 'til I went on a trip and forgot it. A rude awakening for sure. Felt like I was going to have a heart attack.
Then I did some research on the subject and decided then and there I would have to taper off. I just couldn't accept being so dependent on anything.
I do not judge anyone for taking benzos. Some really need them for different reasons.
Began tapering in early Aug. and am about 2/3 of the way there. Got a rough start, but tapering has been pretty smooth for me. I have experienced nausea and vomiting - in the beginning, weight loss, fatigue, body aches, headaches, and some shakiness.
All the above is tolerable; it is not constant or severe. I have heard that sx can get worse the lower you go.
I sometimes have to test my blood sugar to determine if the shakiness is due to benzo withdrawal or low blood sugar. They feel the same.
My blood sugar sometimes drops when I don't eat well.
I hope to be completely off by spring, cutting about 10% every two weeks, going slowly, to minimize any unnecessary side effects.
Tapering off benzos does not have to be a nightmare, though it is more difficult for some than others.
I have a lot of people praying for me which, I believe, has made all the difference.
[ 11-28-2011, 10:20 AM: Message edited by: linky123 ]
Posted by Hambone (Member # 29535) on :
This article appeared in Natural Solutions magazine a few years ago....about the nightmare some people have with this stuff. It's in pdf format, though. Hope you can open it.