I've been treating lyme and company for 3 years now. One year IV, shots, orals, you get the picture
I been through hell and back and am better but not 100%. I'm currently not on antibiotics (3 weeks now) I was put on lexapro and wellbutrin which really help, lyrica (not sure if it's helping), and klonopin.
I've been using klonopin for 2 years now off and on. For the past 6 months I've been taking 1 mg at night to sleep (although its not working now since I've upped wellbutrin by 75mg)
I'm tired of all the crap in my body. sometimes I think it's the drugs making me sick- I want off the benzos and want to do a taper.
Originally, I used klonopin for my head presssure-(one of my worst symtoms) but now I think I just want off it. I think it's making me worse.
Any suggestions?
Posted by lyme987 (Member # 22148) on :
up
Posted by Laura_W (Member # 31491) on :
Sorry, don't have any advise for you. Just a question...
You said that you used Klonopin for the head pressure.... did it actually help with that?
I haven't found anything that helps.
Posted by Laura_W (Member # 31491) on :
Nevermind, just looked up the side effects on the drug.... not worth it. Understand why you are really wanting off.
Posted by randibear (Member # 11290) on :
what are benzos?? you mean anti-depressants??
Posted by lyme987 (Member # 22148) on :
Benzos are things like valium, klonopin, diazepam, lorazpam, ativan,
These are all examples,
Laura, yes, it did help alleive my head pressure
Posted by LSG Scott (Member # 21624) on :
getting off the Benzos was the best thing i ever did to help my Brain fog and de-realization
Benzo withdrawal was also the toughest thing i have been through but after the hell things are so much better and worth it.
you need to taper very slow and under a doctors care if you can, it can be dangerous if you get off them too fast make sure you know what your doing getting off of them
Posted by phyl6648 (Member # 28522) on :
Would you please describe your head pressure. That is one of my worst symptoms.. I take xanax and it helps sooooooo much with my head "thing".. Mine is like a sinus-vertigo without the cold symptoms or heas pain. It is so hard to describe..
Posted by lyme987 (Member # 22148) on :
My head pressure is like someone took my brain enlarged it and is trying to stuff it back into my head. I also have pain and dizziness along with this-
and no, I had all these symptoms way before I started taking benzos,
This is also my worst symptom-most of it is my bart-I've had for about 25 years
Posted by crx (Member # 32128) on :
Why go off the benzo if it helps? Nothing wrong with taking those as long as you follow your doctors orders.
Posted by Laura_W (Member # 31491) on :
lyme987- thats my head pressure as well. vise like pressure... always there. just at different levels. (And then other pains added in at times as well)
I've dealt with it for over 15years. Dr's always never knew what to do with me. After they couldn't find a reason for the headaches, they seemed to be done with me.
At least now I know what's causing the pain & pressure.
Posted by tickssuck (Member # 15388) on :
I take very limited benzos, Klonipin, .25mg as needed. I sometimes go several days not taking it and then I hit a patch where I take it daily for several days, sometimes 2 in one day.
For me, it comes down to quality of life. It certainly doesn't make my neuro symptoms go away, but takes the edge off.
I have worked in a field of employment where I supervise up-close alcoholics and drug addicts. So, I am very aware and concerned about the addictive qualities.
That being said, I just started to voice my concerns to my LLMD 2 days ago. He basically cut me off and said, "take it if you need it and it helps." I am very sick neurologically, I use it as a tool, off and on, to make symptoms more tolerable. At the same time, I am very careful about frequency of use etc. I'm just sharing my journey and how I am dealing with it; we're all different and need to do what we think is best for us. Good luck. TS
Posted by annier1071 (Member # 28977) on :
Amen on that one Tick...too much fear placed on the use of benzos when people truly need them.
I stopped taking mine after reading a LONG forum on here and was so dizzy again I couldnt get off the bed. My doctors are right, "take it, you body needs it to function correctly"..as they told me, I am able to function normally and I am not "loopy" or slurring like an addict would be. Also I am not begging for higher doses. All it does is control my inner ear nerve function that was destroyed during a surgery.
The anti depressants are just as addictive but many need them to live, so why feel ashamed of what your body needs in reality
Posted by gryphon78 (Member # 31930) on :
I agree as well Tick....I was trying to explain the same thoughts on another thread here that seeemed hell bent on scaring everyone off all benzos. I m like you I use mine AS needed and certainly not everyday, usually I have about .5 - 1 mg of my ativan a week. It defintiely makes life more functional in certain situations.
I think the true problems come from constant (daily) use, its kind of like if you drink everyday for a month, your gonna have a pretty high tolerance for booze and feel lousy when stopping. But if you have a couple beers a week your always gonna get a nice buzz from it. Benzos and alcohol do effect the same parts of the brain after all....
That being said I dont exactly trust how much my docs have aurthorized me to take daily, and dont becaus I know myself....
Posted by Arkie-hinny (Member # 26546) on :
Well, benzos have there positives and negatives. On the up side, if they aren't taken daily, I would think that the addictive aspect of the drug will be minimal. Like on an AS NEEDED basis. If the body isn't expecting it in sequence, it won't be as apt to crave it and cause physical symptoms that go beyond cravings.
But on the negative side, Iv'e seen first-hand the withdrawal from them. It's not pretty. If it was me wanting to get off of them, I would go on a slow taper. No advice, I'm not a licensed anything. But in treatment, they use a slow taper to help people get off them.
When I got off antidepressants the first time I cut my dose in half for a long time. Then went to every other day, then eventually stopped slowly. But they are very different from benzos.
Good luck with it. I always say, use common sense and judgement when going off anything and refer to your physician.
Posted by Hambone (Member # 29535) on :
quote:Originally posted by gryphon78: Benzos and alcohol do effect the same parts of the brain after all....
My mom had to switch doctors, and her new doctor refused to keep prescribing Xanax and told her it is alcohol in a solid form.
She took them for twenty years and tapered in about 6 months with zero problem. She says she feels better off them.
Then there's me. I took them for 3 weeks and was toast. The most brutal, hellacious withdrawal imaginable. I'm thinking it was so bad for me because I had Lyme and didn't know.
Posted by gryphon78 (Member # 31930) on :
hambone, how long did it feel like till you got more or less normal after stopping them ?? Just curious like I say I use them very rarely... I definitely wonder about the lyme connection, as I said over time I felt like my use of alcohol was bringing this thing out of hiding somehow. Never figured it out till it was too late.... oh wait that was a different post, anyway
Posted by Hambone (Member # 29535) on :
quote:Originally posted by gryphon78: hambone, how long did it feel like till you got more or less normal after stopping them ?? Just curious like I say I use them very rarely... I definitely wonder about the lyme connection, as I said over time I felt like my use of alcohol was bringing this thing out of hiding somehow. Never figured it out till it was too late.... oh wait that was a different post, anyway
Before benzos I had some weird things going on, but could still fairly function and work.
On benzos I just steadily went downhill and started having out of nowhere panic attacks and feeling toxic and weak. Started waking up shaking and jerking and having feelings of sheer terror for no reason.
First two years off benzos were nothing short of hell on earth. My cns was blown to pieces. I begged to die.
Little by little things slowly got better. I could tell the withdrawal stuff was fading but something else sinister was there. I could just feel it. I still felt horrible, but it was a different horrible than what the benzos did. I didn't have the unbearable derealization anymore that started while on benzos.
Four years after stopping benzos I started the doctor merry-go-round, AGAIN, because I knew something was wrong that they just weren't seeing or looking for.
Five years after benzos I find out it was Lyme and Bartonella, and it had been missed for at least 10 years when I went back and looked at old lab records ( Mayo did a Lyme test at my request in '01 and it was reactive, but they never told me. They gave me an SSRI instead ).
In my case, I think I had Lyme that was slooowly presenting itself litte by little over the years, but the benzos and severe stress brought on by withdrawal made it explode and go full-on Rambo on me while my defenses were down. I also think the withdrawal is what blew out my adrenals, and that somehow added to the Lyme explosion. I had nothing in me to keep it at bay anymore.
Posted by tickssuck (Member # 15388) on :
I have tried to figure out how to do the cool quote thing in bold that cites what someone else said previously, but no luck.
What Hambone said above,
"On benzos I just steadily went downhill and started having out of nowhere panic attacks and feeling toxic and weak. Started waking up shaking and jerking and having feelings of sheer terror for no reason." Lyme has definitely "blown my CNS to pieces."
These were many of my symptoms prior to dx (plus more), years before ever taking a benzo. My neuro Lyme has caused many similar symptoms. I read somewhere a person describing their neuro- Lyme comparing the similarities to benzo withdrawl; however, with no end in sight.
Anyway, I guess my point is, we all have to do what works for us. As I said, the .25 mg of Klonipin I take on an as needed basis, sometimes several a week, sometimes none, takes the edge off and makes living in my body a bit more tolerable.
I am hopeful that, in time, my tx will improve my symptoms so I never have the need again, I pray.
This disease has so many manifestations and can effect people so differently. We all have to figure out what's best for us. Our journeys can be so different, yet the support of each other is so comforting.
In sharing my struggles with a fellow Lymenet member on the phone, she suggested I ask my doc about this benzo. She too takes it only when her nervous system becomes intolerable due to Lyme and company; her symptoms are similar to mine. I thank her for her support and advice. Again, this is how Lyme manifested in us.
Thanks everyone for not judging how I am trying to manage this hideous illness. Keep fighting. TS
Posted by Hambone (Member # 29535) on :
quote:Originally posted by tickssuck: Anyway, I guess my point is, we all have to do what works for us.