ShiningLight: brain injury with gabapentin WD want off others

[Rosetta]

That’s good news!  How stressful.  I’m sure you need a break.  Having a contract job is a plus.  Enjoy your departure from an absurd situation.

[Carmie]

Hi ShiningLight, 

 

Thanks for popping over to my thread. How are you doing? I see you’ve changed jobs, hope all goes well in your new job.

 

Sending hugs🤗

[ShiningLight]

Hi @Carmieso nice to hear from you!

 

I'm doing well, happy and mostly at peace with the job situation. I don't know why I didn't go out on my own sooner. Financially it's a little intimidating and worrisome--that's why I didn't. But I now see that my wellbeing is absolutely worth every pinched and transferred penny. 😀

[ShiningLight]

I seem to have gotten to a point where I was having sensitivity reactions after dosing the gabapentin--I was feeling worse and getting chills, nausea, etc. I was at 28 mg, 7 mg 4x/day.

 

I have seen this happen to others in my FB gaba group and it seems to only get worse after this. So I decided to try stopping to see how I feel. I haven't dosed since yesterday morning. I've skipped 5 doses at this point. Last night I had 2 more hot flashes than usual but today I feel much better. I have to see how this goes but I think I may be off!!!!

 

☺️

 

 

 

 

[ShiningLight]

Twenty days off gabapentin and improving. First week was not too bad, I was ecstatic. Second week definitely had some challenges and feeling very much sick of the whole thing. Urinated 20+ times one of the days, plus woke up 3x for that reason as well. Got labs drawn to make sure I was ok, no problems.

 

Fatigue and discouragement set in. Lots of muscle pain and also the stiffness in hamstrings. Couldn't stand my own negativity. Missed a day of work due to diffuse pain and sleeplessness. Some nausea. In other words, acute withdrawal.

 

Fatigue was one of the worst things. I cut out everything I could cut out from my life (not much left to cut out anyway) and still barely making it. Cut back on work a bit and still barely making it though the day. Living on tylenol. Also painful goosebumpy sensations, those were bad. Felt fluey. Fortunately, sleeping like the dead! 9+ hours.

 

Yesterday and today it's clear that it's starting to turn around. A little more increase in energy and exponential increase in hope. I can see the end in sight and am no longer afraid I will be stuck like this forever. Confidence in the process is returning. Doing well. Enjoying NOT tapering anything right now. Plan to start zoloft taper in 9-12 months or so, depending.

 

Somehow it seems surreal, two long years of this is over!!! I still forget and have thoughts that it's time to dose. I've washed my dose bottles and am going to put them away soon, till next time.

[ShiningLight]

Hello if anyone out there is reading this. I haven't been on SA much lately. I have been very busy with work stuff. I'm doing well just under 3 months off gabapentin. I still have intermittent muscle problems, cottony body feelings--hard to describe that, and occasional fatigue. These things come and go and are so minor compared to what they were. I've even had some moments of happiness. 

 

Enjoying this time of stability and biding my time until I start my Zoloft taper, most likely in the fall. I am REALLY looking forward to starting that taper! Just to have that in progress would be mind blowing after decades at 150 mg.

 

I want to say, for people who are polydrugged: there's hope. Getting successfully off one drug  is making a huge and unexpected change in how I feel about the whole situation. It's like night and day. I feel confident that I will eventually be able to get off, and I feel like I can trust myself.

 

 

 

 

Edited May 26, 2021 by ShiningLight
adding stuff

[BfromNJ]

6 hours ago, ShiningLight said:

Hello if anyone out there is reading this. I haven't been on SA much lately. I have been very busy with work stuff. I'm doing well just under 3 months off gabapentin. I still have intermittent muscle problems, cottony body feelings--hard to describe that, and occasional fatigue. These things come and go and are so minor compared to what they were. I've even had some moments of happiness. 

 

Enjoying this time of stability and biding my time until I start my Zoloft taper, most likely in the fall. I am REALLY looking forward to starting that taper! Just to have that in progress would be mind blowing after decades at 150 mg.

 

I want to say, for people who are polydrugged: there's hope. Getting successfully off one drug  is making a huge and unexpected change in how I feel about the whole situation. It's like night and day. I feel confident that I will eventually be able to get off, and I feel like I can trust myself.

 

 

 

 

Hello there!  I'm not on here as much either but I think its a good thing.   😀  glad to see you have improved!   

[wantrelief]

8 hours ago, ShiningLight said:

I want to say, for people who are polydrugged: there's hope. Getting successfully off one drug  is making a huge and unexpected change in how I feel about the whole situation. It's like night and day. I feel confident that I will eventually be able to get off, and I feel like I can trust myself.

Thank you for sharing this, ShiningLight.  i am so happy for you that you are feeling so well after getting off of gabapentin!  I appreciate your words of encouragement for those of us who are polydrugged.  It helps to hear your experience and how you are feeling about the next taper.  It can feel overwhelming having more than one drug to taper and the unknowns of how it will all go so your experience is heartening. 

[ShiningLight]

I'm getting ready to start the Zoloft micro taper. I was wondering if it is advisable to convert the whole 150 mg dose to liquid straight up, or if it would be advisable to take 100 mg pill and convert only 50 mg liquid, slow taper the 50 mg, then eventually convert the 100 mg to liquid when I get there? Anyone know if there would be a difference?

[RachelSusan]

@ShiningLight Hello, I don't know which way is better but I can tell you the way I did it.  I converted over to all liquid and then tapered from there.  My thinking was that I didn't want to always be filling two prescriptions, the pill and the liquid. I am  glad I did it that way but other people, or the mods, may advise differently. 

 

I've been tapering the Zoloft for five years because I have been going very slowly, but I will be off soon. By the way, I too am on Gabapentin and will wait a few months after I finish the Zoloft taper and then start a Gabapentin taper. I hope that if I have any questions I can reach out to you.

 

I wish you well on your Zoloft taper.  I have a feeling you will be just fine.

 

Warm wishes, Rachel

[ShiningLight]

@RachelSusanit is great to hear from someone who has tapered Zoloft!!! Yes I had been thinking about it last night. I think I will do the same thing I did with the gab, which is slowly switch over the whole dose to liquid. I was just so resisting being on all liquid for so long but I think that makes the most sense, rather than making another change at 100 mg or so. 

 

Please do reach out to me with any questions about gab, I am happy to help! Just make sure to tag me so I'll get a message as I'm not on here often.

 

I'm not planning to make first cut from Zoloft until I transition all to liquid, which will likely be in a few months or so. I'm not in any rush. I just want to feel like I'm doing something to address the situation, so I will use this first part to line myself up for success.

 

 

[Rosetta]

I’m glad to see you are doing so well, ShiningLight!

[ShiningLight]

I am livid. I contacted the neurologist who prescribed me liquid gaba and got out of my way while I self tapered. He previously agreed to help me taper Zoloft the same way. Now he's trying to say he doesn't have experience with tapering Zoloft.

 

And he's pulling the psychiatry card. I am so angry. I never wanted to see a psychiatrist again. It is so damaging. Basically I am afraid they are going to get on the 'you have functional neurological disorder' aka Conversion Disorder aka psychosis train again. My HMO is a place where all the doctors back each other. When this gaba thing started and I kept going to the ER, they were already conversing in my chart wondering if I have FND/conversion disorder. This is agony.

 

I don't think a non pathologizing psychiatrist exists in this HMO. I am thinking that my option is to appeal through the levels to get the liquid or to pay someone privately and I think the Zoloft would be a few hundred a month at Costco. Which is not very affordable to me in my current incarnation. It's worth the price but it would be financially irresponsible for me to do that for 7 years.

 

I am concerned that if I go to psychiatry and seem "guarded" they are further going to label me with psychosis because I don't trust psychiatry. I want to 😱. 

 

I have to wait and see what his psychiatrist friend says. Maybe it will turn out better than I think. But to be in this place again is awful.

 

[Altostrata]

On 7/19/2021 at 9:41 PM, ShiningLight said:

I was wondering if it is advisable to convert the whole 150 mg dose to liquid straight up, or if it would be advisable to take 100 mg pill and convert only 50 mg liquid, slow taper the 50 mg, then eventually convert the 100 mg to liquid when I get there?

 

I would take part in tablet form and part in liquid form as long as you can, it makes the transition to all-liquid easier.

 

Generic sertraline tablets are usually available at very lost cost from chain pharmacies. If you're taking brand-name Zoloft, you can make the change in brand gradually by taking brand-name one day, generic the next for a week or two, then take generic consistently.

 

You can make your own liquid, see Tips for tapering off sertraline (Zoloft)

[ShiningLight]

Oh, great. It was the neuropsychiatrist, expert in conversion disorders/FND that my neurologist consulted with. 🙄 😩 😡 Of course, the expert flat out said that Zoloft doesn't need to be changed to liquid and it doesn't need to be tapered that quickly. His "offer" to me is to taper 12.5 mg a month. No thanks.

 

My doctor wrote back asking why liquid. I pointed out to him that I ended up with a permanent cogwheel tremor of the wrist from a taper such as the expert is recommending and I don't want to exacerbate any movement disorders further. My neurologist is the movement disorder specialist, so maybe he will care about that. It's becoming more and more clear that he was just "putting up with me" and humoring me as the crazy liquid gabapentin lady. 

 

I may end up making my own liquid. I was hoping to avoid that.

 

I know that I can't depend on the medical establishment for validation but still being back in this situation and being pathologized and gaslit is infuriating. It's bringing back some pretty awful memories. 

 

 

[ShiningLight]

Feeling a bit unhinged internally but able to behave normally outwardly.  This thing has really upset my equilibrium and brought me back to a time I'd rather forget. It is infuriating me to the extent that I'm tempted to write my story and send it out to the world.

 

Derailed me. That is the word I'm looking for. This has derailed my day. I will find my way back, but geez!!!

 

This is the kind of gaslighting behavior on the part of the "professionals" that causes some patients to become violent. When a person feels like they have no control or dignity in "the system." godess help us all. To be clear, I personally am not making threats of violence. What I am saying, though, is that I understand some of the causes of patient violence to be in relational dynamics such as this. 

 

Infantilize people and treat them like they're crazy and they may start behaving like it.

Edited July 21, 2021 by ShiningLight
adding a sentence

[ShiningLight]

Doctor negotiations are ongoing. Surprised to say that doctor is "researching safe ways to taper Zoloft." I'm still being told that liquid is rarely or never done. 🙄 It was proposed to me that doing a "slow pill taper" would be safer. I said no. This is not something I'm going to do.  

 

Mixed feelings. It seems that the more I interact with doctors the worse I feel. How wonderful if I could get liquid from the HMO. I have given them the Horowitz article on hyperbolic tapering.

 

What I do appreciate, and am surprised by, is that he didn't just write me off when I said no to the "slow pill taper" that they offered. They may come up with something dumb though. Sad medical commentary that I think it's exceptional to be treated with some individualism.

 

Pharma MD says he is researching whether liquid and pill zoloft are equivalent. 

[ShiningLight]

I am feeling pretty defeated and hopeless about the delta variant. I am immunocompromised, vaccinated but my response to it is uncertain. Delta is surging in my area. We are on our way up with no end in sight. Only about 45% in my county are vaccinated. 

 

I was invited and wanted to go to a pot luck bbq this weekend. Not going. Bored and lonely at home. Can't believe I need to do my personal modified lockdown this thru Oct or Nov at least, according to articles I have read.  😭 💔 😡

[Erell]

Just realising you finished your Gabapentin taper, Congratulations!

I know it's been a long road, you should be so proud of your amazing strenght and patience ! ☀️💪

 

My best wishes !

[ShiningLight]

Aww thanks Erell! Whew it was a trip.

[Rosetta]

As to the Zoloft, he is offering 12.5 per month.  That would be by breaking 25 mg pills, I suppose.  It seems that 25 mg is the smallest pill.  Of course, that’s too fast.
 

I’m glad you gave him the article.  I haven’t read far enough back to see what problems you had that cause you to want to use liquid for the entire taper.  I hope that you can work it out.  I find it infuriating, too, but you may not struggle as much with making your own liquid as you think.  Also, perhaps by the time you get to 50 mg or 25 mg, your doctor will be convinced that you need a slower taper.  A few years from now, his attitude may change a lot.

First, can you time it so that you fill a new prescription of your 100s and 50s, and then get him to give you a bottle of 25s?  That way you will have extra.  
 

I think that, at some point, you should accidentally spill a new bottle of your 100 mg pills in the toilet — not really — and get a new bottle.  Then you will have a back up bottle of 100 mg doses so that if he makes you taper by 12.5 per month, it won’t matter as much.  (I don’t mean save that bottle until the end.  They will expire.  I think they last 6 months if stored correctly.)

 

I feel that protecting yourself from ignorant doctors requires a bit of subterfuge.  It’s their fault.  The info is out there for all to see.  It’s unbelievable that he is waffling.

[ShiningLight]

@RosettaYou'd think I was trying to negotiate the Treaty of Marseilles with all this pomp & circumstance.

 

I want to go that slow because what I've learned here, and I've been on it over 20 years. I've tried to get off maybe 3 times and never made it. The time in 2014 was the worst, I ended up in a dark place and barely made it as I waited for it to kick in again. It took a few months for it to kick in again. I never want to go there again. I took a month or two to "taper" then. The main reason was side effects of excessive sweating, armpits and soles of feet. I hate that. 

 

What I remember about that time is being ecstatic I was off. I was so happy! I felt things more vividly. I can't recall how long it took me to fall, but when it happened it was bad. What I am really, really looking forward to is starting to see a reduction in emotional blunting. Who the heck am I? I can barely remember, I've been on this drug for so long.

 

During the gaba taper, I learned how tenuous CNS stability can be. There were times when I thought I was better off than I really was, so I understand how sometimes even one tiny change can throw it all off kilter. I spoke with Dr. Shipko once and he told me a story about someone who got akathisia for 7 or so months from their first SSRI 5% drop. 😩 Uncommon but frightening. Long time user like me.

 

Somehow I already have a few back up pill bottles right now, which is good.

 

I prefer rx liquid so I can be above board with what I'm doing, if at all possible. However, I can already tell by the way that they're treating me that they are going to be condescending towards me. I mean, they already are flat out trying to school me that liquid isn't necessary, it would be a rare approach, etc. Bruh, I already know the latter & you're wrong about the former. 

 

I feel like his waffling is really about something other than "I've never done this before." This guy is an accomplished neurologist. I think it's more about liability and possibly also not wanting to deal with me for the next x number of years. 😂 I think he's concerned about scope of expertise if something happened and I destabilized, started causing problems for him, and he felt the need to send me over to the psychiatry arm. That would look bad for him.

 

I have a bad feeling that if this negotiation is successful and they agree to rx liquid, that somehow I'm going to have to see the neuropsychiatrist, which I have noooo interest in doing as it will do me much damage in my health record. The neuropsychiatrist is a specialist in...you guessed it...functional neurological disorder! This is like watching a bad soap opera. I'm only hanging in there to see the final outcome. 

 

I'm also concerned that they may agree to something, and then start jacking me around. I don't trust them.

 

I haven't told them how bad it was for me when I tried to get off before because then I'm going to get, 'it was probably a recurrence of your depression, you need the drug.' I can't bear to hear that, it would be infuriating as I know it's not true. I am going to play it close to the vest with them.

[Rosetta]

Ah.  If you want to drop 7.5 mg for your first drop, you will need a liquid of some sort.  It’s your body and your mind.  Even if you are less anxious to start the taper because you are making a 5% drop, that’s legitimate.  
 

Zoloft at 150 mg is a very high dose.  I slept 16 hours a day sometimes at a lower dose of Zoloft.  
 

The definition of FND sounds a lot like WD syndrome or adverse reaction syndrome to me.

R

 

[ShiningLight]

2 hours ago, Rosetta said:

The definition of FND sounds a lot like WD syndrome or adverse reaction syndrome to me.

R

 

 

Me too. Zoloft gives me insomnia. That's why I'm on the trazodone. I wish I hadn't ruined my life in this way. At least I'm aware of it now.

[ShiningLight]

I am so grumpy. The chronic muscle tension, probably from the blasted decades of Zoloft, sucks. I am so looking forward to starting this taper. Still no answer from the MD component.

 

Summer is also a difficult time for me. I don't do well in the heat. I am also so stressed about covid part III. I am vaxxed but I have an immune condition. I am so angry about this third wave. It's so cruel. I was hoping to start being able to do stuff again but I'm back being afraid of the dentist and the hair stylist. 😔

 

I feel like I am subsisting...nothing nice to say today.

[Carmie]

13 minutes ago, ShiningLight said:

I am so grumpy. The chronic muscle tension, probably from the blasted decades of Zoloft, sucks. I am so looking forward to starting this taper. Still no answer from the MD component.

 

Summer is also a difficult time for me. I don't do well in the heat. I am also so stressed about covid part III. I am vaxxed but I have an immune condition. I am so angry about this third wave. It's so cruel. I was hoping to start being able to do stuff again but I'm back being afraid of the dentist and the hair stylist. 😔

 

I feel like I am subsisting...nothing nice to say today.

Sorry you’re having such a bad day ShiningLight, sending you big hugs🤗

[ShiningLight]

Looks like soon I will be the proud owner of some liquid Zoloft! 😀

 

I gave them the Horowitz article on hyperbolic tapering. He didn't say why he changed his mind, but whatever the reason, I am so glad.

 

I told him that to start I would like to convert 25 mg of the 150 Zoloft dose to liquid, hold for awhile, then cut 3 mg from the liquid, then hold. I'm waiting to hear back.

 

I just want to be ON MY WAY so bad. Even if it's slow. I want to be working on it.

 

Edited July 29, 2021 by ShiningLight

[Rosetta]

Good news!

[ShiningLight]

I braved the pharmacy (delta is surging here) and got the goods. 😀

 

 

[ShiningLight]

Made the switch to 25 mg liquid a few days ago and am just hanging out here for the next 4 weeks or so. Had a few extra hot flashes. Aside from the liquid tasting horrible, not much else to report.

 

This is a weird time. I feel like an 🛩️  lining up for the landing. Still circling.

 

Not sure who I will be during or at the end of this process. I have a feeling that for the first 50 mg of tapering, I will start to feel better as side effects start to improve. Not sure about the last 100 mg. That's where it got hard during my previous attempts to get off.

 

I feel that making progress in this taper will help with the anger at my lost life because I can actually start righting it. I know I'm supposed to be trying to do that now, but I find it next to impossible with the pandemic and the drugs, which make me feel like I'm going through life with my hands tied behind my back.  

 

 

[composter]

Sorry about your back and forth troubles w the doctors. I hate that feeling or fear of being medicalized and pathologized and the power differential. A lot of it could be lack of experience and knowledge like you mentioned. I think you come across as informed and rational especially with sharing papers, I find that helps a lot. And it also helps to release whatever we think others think of us. 
 

Glad you were able to get the liquid. I prepare my own liquid from tablets because it’s a lot cheaper that way. Not sure if you did that for the Gabapentin taper? 
 

Hot tip: Mix the liquid with juice, it helps take the awful bitter taste away. Onwards and cheering for you on this taper! You know and your body knows to take it slowly so I’m trusting it all goes smoothly. 

Edited August 4, 2021 by composter

[ShiningLight]

3 hours ago, composter said:

I hate that feeling or fear of being medicalized and pathologized and the power differential.

 

Yes, exactly. It's awful. 

 

I got liquid gaba. Thanks for the juice tip!

[Carmie]

Hi ShiningLight, 

 

Hope your spirits are a little better. It’s quite a rollercoaster ride, isn’t it? One day at a time does it, one hour at a time if need be. 
 

I’m happy you managed to get your liquid. I use liquid for the Seroquel I’m taking too, like Composter I make my own, I just put it in water. 
 

Take care🤗

[ShiningLight]

I made my first cut, 3 mg. I was planning to wait longer but transition to liquid went fine so I decided to go for it.

[ShiningLight]

For myself, and anyone else on here who needs to hear it (but especially me): the point is NOT to get to that point. To taper without destabilization if at all possible. To taper and be as well as possible, not to push the 📩 .

 

I am reminding myself (in thought only thank goodness) how awful it feels to be destabilized. Debility. Hours of crying. Insomnia. Neuro sensitivities. Fatigue. Movement disorders. Helplessness. Inability to work. Despair. And the only thing to do at that point is hope and wait. Awful. 

 

If I'm gonna be at half my current dose in a year or two, that is fast enough. 

 

I have seen a few posts and remembered my own experience from fast taper before I knew better. I made it down, and then 2-3 months later, the drug extracted its revenge. That resulted in another seven years on this garbage, because I swore I would never try again. I gave up because I didn't know better. I took the drug to stave off the withdrawal effects. I didn't realize how much it was harming me.

 

Doing fine and chillin with 3 mg cut, 24+ hours out. Half life of 26 hours.

 

Making 2% cut on drug I've been on for 20+ years is a big deal! Not to be underestimated. 

[Rosetta]

I hope it goes well.  That’s a lot of Zoloft.  I was up to that dose, too.  Completely unnecessarily.  I’m so glad your doctor gave you the liquid.