Is anyone here on Baclofen?

[[ar...]]

Hi buddies,                                                                                                                                                                                                                                                            Im doing okay as long as I as I take it easy.  I did some strenuous yard work and paid for it with a big wave of tremors and anxiety, day before yesterday.  Learned my lesson!  Completely off the meds now.  Getting off the gabapentin was a lot easier than baclofen.  Every time I reduced it, I would have three bad days and then level out.  I understand that gabapentin and lyrica are chemical siblings and that lyrica is two to four times better at pain relief than gabapentin.  I hope that doesn't mean its two to four times harder to get off of!  Anyway, hang in there, buddies, it HAS to get better!                                                                                                P.S. to Shania!  What is  "the Journey" ?

[[Dt...]]

Hi chipmunk!!

Sorry to hear you’re still struggling and that I’ve been off the radar.. needed some time to get back on track. I’ll respond to your PM today xx

 

Arizona I’m so glad you’re getting better but sad that at 6 months out you still get tremors and anxiety, have the doctors given any advice or reason?

I almost stopped but panic attacks and tremors and after 6 months of being in bed and weak I couldn’t take it, so focusing on getting physically better and my immune system functioning (I also got dxd with Lyme last year, try getting docs in Aus to believe you) so they think that’s caused a lot of the extreme reactions to tiny amounts of things...

 

Have you got any other health issues?? I’ve found diet has helped me hugely the past few weeks, a lot of the symptoms of tremors and anxiety are excess glutamate/ excitoxicity so along with gluten sugar and dairy I’ve cut out a bunch of grains and glutamate rich / increasing food (so many strange ones you’d never guess) and along with natural supplements I’m starting to feel better ☺️

 

My nerve pain is excruciating, didn’t have it before the CT as bad but it’s a combo of meds and Lyme I think. Hurts a lot, all the time 👎🏼

[[ch...]]

DTRAIN!

 

no worries, sorry to hear you're still in such pain 

 

really glad new diet + supps are helping tho!

 

Re Lyme - oh gosh -- could this be the root of w/d + med probs...? 

 

crikey - Lyme... i've never been dx'd -- but did work a lot in very dense tick areas -- like 50 varieties of ticks !? 

 

....so definitely wondering about that too.... hmm.

 

thinking of you 

 

 

[[mi...]]

I had a horrible experience after my Dr. said I could go cold turkey off baclofen. I had to go back on it to get some relief, and then even at a higher dose I was getting horrible breakthrough withdrawals all day for months. It was awful. Gabapentin didn't help. Finally, I found a doctor that put me on Phenobarb to kick the baclofen. That totally worked. Now I am slowly tapering the phenobarb over months (so far - easy) but finding the gabapentin surprisingly difficult. It gives me dark thoughts when I take it, and withdrawals as I taper. But I'm getting closer. 14 days to to go on my taper!

[[On...]]

@[wi...]

  I agree. Baclofen it’s easy to get off of.... I had two major surgeries earlier this year or should I say last year six months ago for TOS Thoracic Outlet Syndrome.. I had my first ribs Removed bilaterally and some muscles. I’ve been on baclofen for about four months now. It’s not going to be difficult. I taper down off of gabapentin that took about three months after taking it for a year not a large dose just 900 mg a day 300 mg three times a day. But I’m having another surgery a Neurolysis... This is going to hurt and burn my nerves when they clean the scar tissue off of them. I recently started back and gabapentin because my surgery is in two weeks and I want it in my system before I have the operation. Do you think it will be difficult to taper off of gabapentin again?  is there such thing as kindling on gabapentin?  But baclofen easy money

[[Dt...]]

Hey mirabilis.

 

You poor thing! That sounds awful.. sorry to hear of your suffering.

what dose were you on?

And what kind of symptoms did you get? Especially with the breakthrough? I’m trying to work out what is doing what atm to work out best plan of getting off everything!

Docs are baffled when we present with issues from Baclofen, they all say how rare it is but obviously there are sone that suffer!

I’ve been trying to taper but the symptoms got too bad so I went back on 10 and will try again soon when I’m feeling stronger... tiny dose, as soon as I get to 2.5 once a day, shakes anxiety attacks, stiff as a board! But bac has wasted my muscles away to nothing and I’m in so much pain and do weak do I need to get off it... 👎🏼

That’s great the pheno worked for you!

[[ch...]]

ARIZONA

 

so glad and envious you're off all the meds, so lucky.

 

and thank you, trying hard to hang in.

 

Lyrica tried only 4 days @ 25 mg = awful sxs -- doubled my worst benzo sxs + added new, SCARY sxs....

 

and 1 month later = new DVT type sxs -- GP did some blood test for heart failure 

 

i forgot that a few yrs ago was Dx'd w/ 'mild age-related valve regurgitation'....

 

wish i'd thought to tell new GP -- maybe never would've touched Lyrica...

 

so scared now.

 

[[ch...]]

MIRABILIS

 

sorry about your Baclofen c/t too... 

 

also tried to reinstate and re-taper twice, but GP would only let me try over a couple weeks.

 

then stupid ER Doc gave me Ativan instead of Bac - which i listed as my med at triage....! 

 

been downward benzo spiral ever since.

 

glad to hear the Pheno helping you off nasty Bac.

 

sorry about Gaba P.... my 4 day Lyrica trial = severe health setback ... see my post to Arizona... 

 

but you sound on your way to freedom -- good luck -- almost there!

 

[[ch...]]

DTRAIN

 

oh no, sorry to hear you had to go back up on Bac... and bedridden again, awful pain... so sorry dear buddie.

 

can you still walk and try gentle movements?

 

does the Valium not help w/ Bac w/d at all?

 

 

yes -- 3 GPs + ER Doc refused to believe my Baclofen w/d -- nor was i warned by 4th GP who Rx'd it --- we must be minority

 

for me it was tolerance after 2 months + then forced c/t --  my GP didn't believe w/d sxs either....

 

then finally said i was 'addicted' to it.... also to the Ativan the ER gave me.... *instead of Bac i listed at triage that i was trying to re-taper* .... thanks a lot, stupid ER Doc 

 

.... sorry to repeat this sob story.... 

 

 

have you read old threads on here Re Baclofen ?  if not, you can try to get some insight --- very potent.

 

esp. used for alcohol w/d -- so weird things it does to CNS -- to stop cravings, etc..

 

i think lodges in 'dorsal horn' of spine...  oh great.

 

i can't recall the rest.... but just nasty -- also -- 'insecticide'  -- as Arizona said !?

 

there's a also a new v short thread, Re Bac for CLZ w/d... but no buddy had insight, i guess all of us in the dark.

 

only been around 50 yrs... why all the mystery on what the hell it does to us?!

 

 

[[Dt...]]

Oh chipmunk! I’m so sad to hear of all this, my hear breaks for you.

So much suffering.. some of us are just sensitive huh...

When were the minority sometimes the docs just don’t know what to do! And that’s even worse for us going thru it!

V didn’t really help the bac WD .. maybe slightly but as it’s different receptors it still won’t civer it.

I just can’t take all these WD after WD and side effects 👎🏼

 

What happened when you came off bac? And what did it feel like to be in tolerance?

It might help me make sense of it to me.. trying to work out what to taper first...

 

I can go for little walks every few days when I feel up to it but just exhausted, pained and constant anxiety. My supplements and strict diet seem to be helping a little but it’s slow and hard to tell.

I’m tolerant to both meds now, neither helping anything except making me worse!

 

How ru?? What happened with the Lyrica you poor love?

 

I will PM you tom to catch up.. so sorry I haven’t just been trying to get into better spscevabd work thru this nightmare.. I have been thinking of you and sending positive thoughts x

[[Fr...]]

Anyone? ☺️

 

I was on Baclofen for another condition I have and yes, it too is another drug that WDing from comes with bad side effects. I'm not sure what advice I have as far as to taper or how much your taking? But talk to your doctor first (of course) and try to wean off. I struggle with CONSTANT muscle pain, so I check into a wonderful massage therapist every week for a two hour session. I also began an exercise regime (that took a while to find, I tried yoga, walking, running, meditating, zumba...the list goes on) but landed with biking and I love it.

I think the massage combined with physical activity was my ticket to controling muscle spasm problems. I still have pain but it's less.

Good Luck

[[mi...]]

Thanks all for the support!! And wishing you all my support too.

 

I had months of severe anxiety, depersonalization, hazy vision, insomnia etc. after the baclofen wd and as breakthrough symptoms. I was only on 40 mg of baclofen and 1800 of gabapentin.

 

The switch to phenobarb helped tremendously with a lot of this, but the gabapentin was giving me a dark depression (which I have never had before). So now that I am tapering the gabapentin and phenobarb both, I am getting some of the above symptoms back in trickles and waves, but they feel somewhat different so I think they are mainly the result of the gabapentin taper.

 

One thing that I think was making my baclofen wd symptoms worse was even modest amounts of alcohol. As most of you know, baclofen and alcohol both act on the GABA-B receptors, so that makes sense. So my nice wine collection has to just sit here untouched until I am healed.

 

 

[[mi...]]

Yes, I started swimming and that helped a lot. It is/was hard to drag myself out in the cold and dark to go to the gym pool, but after swimming some laps (enough to get tired), I would typically get a few hours to a day relief or major reduction from symptoms.

 

 

Anyone? ☺️

 

I was on Baclofen for another condition I have and yes, it too is another drug that WDing from comes with bad side effects. I'm not sure what advice I have as far as to taper or how much your taking? But talk to your doctor first (of course) and try to wean off. I struggle with CONSTANT muscle pain, so I check into a wonderful massage therapist every week for a two hour session. I also began an exercise regime (that took a while to find, I tried yoga, walking, running, meditating, zumba...the list goes on) but landed with biking and I love it.

I think the massage combined with physical activity was my ticket to controling muscle spasm problems. I still have pain but it's less.

Good Luck

[[...]]

You can’t tell at this point what is diazepam withdrawal and what is baclofen. You were in the time period of likely worst acut withdrawal symptoms, why would you think that most of the issues were baclofen?  That generally is our kind in freak out mode and trying to control things. It’s most likely the baclofen is actually helping some withdrawals from diazepam you are having, but it’s kind of kicking the can down the road. I promise you the more you oscillate up and down and on and off the worse you will be. I see a lot of people doing that on here and it’s painful to read. Make a plan, stick with it, ride it out.

 

I was on duloxetine, baclofen, and clonazepam for a decade. I came off them in that order. It’s been a f$&$ing ride the whole time, but things were “manageable” until I was totally off clonazepam. Healing verrrry slowly 6 months off.

[[Dt...]]

You’re right Ican, sadly between the forced CT and everything and doctors telling me it was no longer WD I freaked and went back on on doctors advice to stabilize and taper.

Not really helping as it’s somewhat paradoxical now, and yes I need to get a schedule and stick to it.

 

Just trying to work out which to tackle first.. most would say benzo but since starting the Bac things really went downhill and I’ve been pretty bedridden from weakness and fatigue. Even in the midst of my swap from K to V, underdose snd severe K WDs of full body tremors, vomiting etc, I was still functional somewhat and out and about. Now too weak to have a bloody shower!

Just need to work out how best to get off both of these, deal with the fallout and heal from there, while trying to tackle Lyme 🤦🏼‍♀️

[[mi...]]

Ican is right that it is hard to tell, but that doesn't mean that the baclofen isn't a problem. It was a big problem for me at doses that seem low (and that may be part of the problem). Baclofen has an extremely short half life - so I think we are (in essence) going through lots of mini CT withdrawals. I think (I could be wrong) that if one were on higher baclofen doses (and I am not suggesting you do that at all, just trying to communicate a theoretical concept) that the concentration wouldn't get to effectively zero within hours as it likely does on someone who is just taking a little bit of baclofen. The half life of baclofen is only 3-4 hours. So someone on 80 mg of baclofen spread over three doses a day is never going to get down to very low circulation levels in a day dosing that typical way. Whereas if you are taking only one 10 mg dose a day, you'd have effectively 0.6mg in circulation after 12 hours! That might not be a big deal for someone with normally-regulated GABA receptors, but for those of us with GABA-eric injuries, that short cycling of GABA-stimulation and essentially near total withdrawal doesn't seem good - unless maybe you arrive there via very slow taper. Phenobarbital, on the other hand, has a half life of 50-100 hours and broad GABA-activity. So you may want to talk to your doctor about it. Here is an example from the peer-reviewed literature of phenobarb being used for phenibut withdrawal, which like baclofen, is a short half-life GABA-B agonist:

https://www.ncbi.nlm.nih.gov/pubmed/28441273

But, I think importantly, the doctor has to be willing to let the patient taper off the phenobarb over a long time, not just dump them CT after a quick transition. Anyway, don't listen to me..just some thoughts for doctor conversations.

 

[[Dt...]]

That’s great info thanks mirabilis!

 

Exactly how I feel, I mainly feel the physical symptoms of the bac, I dose 2 times daily at 9 and 5, it doesn’t really help my anxiety anymore but stopping I certainly feel it! I presume it’ll make things worse for a bit before it gets better?

I feel it in my muscles, and can tell the relaxant part is somewhat run out as all my muscles feel like they are burning and being pulled, when I stretch I swear they could snap! I get tremors too... part I know is from my ct still but the muscle tremors I wonder if are from bac as I researched and ppl got them from muscle weakness and loss of strength. It’s also listed as a side effect...

But I’m going to have to get off it now as there’s no point dragging it on as it’ll just make things worse.

Your info was v helpful thanks! I’m seeing doc tom to work out taper schedule.

Did your muscles start to return to normal once your off it? I hope the burning and fatigue etc will fade once I get off it and keepbuukdujg mysekf up 🙏🏼

 

 

[[St...]]

Hi,

 

I've been taking Baclofen and Tizanidine for spasticity but they make me tired. Does anyone know good tapering plans for these drugs?

 

I started tapering on 1/27/2019. I am using Jim Hawk's liquid tapering schedule for benozdiazepines, but it's too slow for Baclofen and Tizanidine.

 

Thanks!

 

Starlight

 

 

[[mi...]]

That is possible, but here's an alternative hypothesis (which I am not at all claiming is correct): Some people are more prone to GABA withdrawal effects (broadly) than others, perhaps because they "down regulate" receptors or otherwise adapt to perturbations of the GABA system more quickly (or to a greater degree) than others as part of homeostasis. In some respects, this could be seen as adaptive or beneficial because such changes counter the inhibitory/CNS depressive effects of GABA drugs while they are present. My new doctor has been treating folks with various types of withdrawal symptoms for decades and he claims it is impossible to predict how severe any given individual's response to withdrawal will be, which is anecdotal, but suggests that people are variable in sensitivity from the outset. 

 

Hey guys, yeh  I have constant stiffness, tremors , and jitters, especially in my neck back and legs. So, I have a theory. I was on klonapin five years ago and it took six months to get off it.  I was reading about about something called "kindling effect." I noticed  you guys both have taken benzos.  I was hoping kindling effect was not the problem  because benzos only affect the gaba A receptors  and baclofen only affects the gaba B receptors........but  who  knows.

[[Ma...]]

I'm tapering phenibut and gabapentin. I've switched from baclofen to phenibut several times to help me taper off both of them but usually settle on phenibut. I feel less depressed on pheniubt compared to baclofen. These drugs are very difficult to get off of. There are less side effects with these gabapentinoids compared to benzos but the WD is just as dangerous from baclofen, gabapentin or phenibut. From what I read unless I'm mistaken withdrawal from baclofen may even be more dangerous than benzos but I'm not sure on that one. Especially when you have a baclofen pump connected to your body, you can die from the withdrawal. Can't believe this drug is not considered addictive. My advice is just get the pheniubt from liftmode called phenibut f.a.a. it goes down pretty nice and is not acidic like regular phenibut is which really messes with your stomach. I can't even use normal phenibut but something about this phenibut f.a.a. stuff. Way better than baclofen and easier to taper. 10mg of baclofen equals to 800-1000mg of phenibut f.a.a btw.

Fasoracetam may help aid tapering phenibut too by up-regulating gaba b receptors. You can google fasoracetam and gaba b if you want.

The ketogenic diet helps too. Wow is this a pain in the ass though. I'm dropping 25mg phenibut and ~15mg gabapentin every 3-4 days for a bit. Pretty rough stuff but the ketogenic diet makes it easier. I'm just glad I'm off memantine and have more control over things.

[[mi...]]

Hey Mamoot,

 

Hang in there, I'm going through this too and know it is rough. I cut to 25 mg gabapentin last night.

Stopping drinking helped me (some) with the baclofen.

Magnesium citrate supplements are helping with the gabapentin cuts (taken several hours before or after your dose). CBD oil gives me a little bit of relief.  Exercise helps the most for both - in my experience.

I bought some fasoracetam, took it once, and decided, hey this drug is very poorly studied, it could be doing something worse than what would happen if I just take the time to heal without it. Bacopa might help with GABA-B and it has been used for centuries.

[[Ma...]]

There are worse things than fasoracetam but I understand why you stopped. I don't like using it. I've had the same 5g container for over 2 years. It certainly doesn't help enough but I may give it another try, who knows. Magnesium, CBD and exercise are essential. The dry sauna has been a big help for me at this gym I go to. I started talking to people to and it gets me out of the house. I should look at bacopa again. Ashwagandha seems to be helpful as well. Kanna helps the depression.

 

You must be so psyched to be at 25mg of gabapentin. So close to the end. The light shining through. I still feel buried in kaka but I'm at the tail end of this. Do you have any opinion on that recent study about baclofen causing encephalopathy? I don't know how common it is or if it is a rare side effect. That study makes it seem like it is a dangerous neurotoxin. huh

[[mi...]]

Yeah - the dry sauna - I just started using that too. Very helpful.

 

I was feeling surprisingly good today, then this evening, I realized how much work I have to do this week and started having an irrational attack of anxiety and depression. Gotta take some deep breaths and rally. I've never tried Kanna. I may have to check that out.

[[Su...]]

Feel for all of you on here going through baclofen and clonzapam withdraw, as well as other meds. Combo is tough.

 

Anyone successfully withdraw? I believe I am in tolerance with muscle spasms, unsure from which  drug. Having to switch clonzapam brands which has been very unpleasant, like wd.

 

Searching for hope...

 

Best,

Sun🌻

[[Aj...]]

Besides muscle problems can I ask what symptoms people had from a Baclofen and awD from it.

 

I took it for a month in March 2017 and then tapered quickly over a couple of weeks.

 

I then reinstated diazepam.

 

I am trying to work out what is from B WD and what is from reinstating diazepam

 

I got hyperacusis, terror, phobias, colours too bright, bits of world going ultra 3D and jumping out at me, people looking demonic.

 

This didn’t ease until a good few months later but by then diazepam dose had gone down again.

 

I need to take something for severe muscle contracture- I really would go back on diazepam and several ppl have said their symptoms initially got much worse when reinstated and then started to ease but a I had not had the hallucinations and terror and phobias before B and reinstating.