ShiningLight: brain injury with gabapentin WD want off others

[lalala]

On 4/20/2019 at 6:55 PM, ShiningLight said:

OK I have no idea bout the tremors now because I took a nap and woke up and had them. Whatever.

thats nice that you can take a nap, thxs for your post on the other thread...its still very difficult to absorb. I don't have a day that I feel normal... and still looking to 

get a job.. I don't sleep very well

[ShiningLight]

@lalala I hope you feel better soon. This is a really difficult thing to go through.

[ShiningLight]

Just popping in to say...doing well, at or close to wd normal. The worst thing about this experience right now is the sense of waiting and eagerness for the next dose decrease. That is of course a great problem to have.

I found some ½ ounce glass bottles online and bought enough so I will be able to store 2 weeks of doses before I have to measure up more doses. That will be a relief because right now I have to do it every 6 days. I keep the premeasured doses in little plastic trays in the refrigerator along with a post-it note of the dose so I don’t get confused.

I’ve added a magnesium supplement, and I think this has been very helpful. However, it’s not at a consistent dose because the pill is 300 mg or something, which is too much. I open up the capsule and take about half, at about 9 am. I have ordered some 100 mg mag online; I plan to take it twice a day. I am spacing it out 2 hours from the gabapentin.

The nausea is gone and I am sleeping through the night most nights. I seem to be over the trazodone withdrawal. The sunken eyes are also gone. I’m not getting the burning cheek pain, which is nice.

This is what it looks like:

8/3/19

7:15 am R rib cage pain/muscle spasm, multiple times within 5 minutes. Severity is moderate, but because it’s brief, it’s not a problem. Just a bit annoying. I woke up late and am late with the dose.
7:30 am 90 mg gabapentin liquid
8:00 am brief sensation of bilateral burning feet, mild in severity
9:00 am 150 mg zoloft
10:00 am cleaning the house, taking ~150 mg magnesium
1:00 90 mg gabapentin. Meant to take it sooner but I forgot--did not have my usual mid-morning hot flash. Making a snack.
2:00-4:00 pm Friend comes over to visit. Talking, eating, playing with dogs. Enjoying having my friend come to my house because it gave me a reason to clean and also I don’t have to be out in the 100 degree heat! Also enjoying throwing together some finger food for us. Also appreciate not having a hot flash in front of my friend!
4:30 pm 90 mg gabapentin
5:30 pm Hot flash
6:00 pm Resting. When I lie down initially, I get some mild muscle twitches in my legs.

I’m planning my next dose reduction this Thursday or Friday. I will continue dropping in 20 mg increments until somewhere between 200-300 mg when I will slow it down, sooner if I start to see a progressive worsening of wd symptoms.

[ShiningLight]

By the way. If I can clarify what I mean by doing well: doing well at this point in my life means I’m able to go to work and do something social once a week or once every other week. These things are great improvements over where I was in the last year and I am grateful for it.

At the same time, I’m not having a happy life. I seem to vascillate between being emotionally numb and kind of robotlike (almost all of the time), to intense feeling states. While emotional anesthesia was certainly an effect of the drugs, it seems even more increased in withdrawal.

I was thinking today: I should prepare myself, because as numb as I am for as long as I am numb, this may well predict the opposite.

At night I get particularly panicky sometimes. Like tonight. I wonder if that has something to do with my trazodone dose being due, because it happens before I take it, and it seems to happen around the same time every night. It happened last night.

In the notes below, I define a mini hot flash as a hot flash that isn’t as severe as usual. The severe ones turn my face, arms, and chest beet red. The mini ones cause a slight flush but not that level of severity.

This was today:

5:20 am 90 mg gaba. almost immediate mini hot flash
5:25 am R calf dystonia
9 am 150 mg zoloft
11 am 90 mg gaba
12 pm lackadaisical ride on exercise bike, L knee spasm
2:15 pm mini hot flash
4:00 PM 90 mg gaba
8:30 PM 90 mg gaba
10:30 PM Panic, terror. This is centered around will I ever get off (the zoloft, in particular...very scared to eventually taper that...had several failed attempts resulting in an agitated depression and suicidal thoughts in the past). Also, feeling like my whole life has been ruined by these drugs. Very upset. This comes in waves.

10:30 PM 50 mg trazodone

11:15 pm lying down in bed, get random muscle twitches once throughout various areas of my body. Biceps, hamstrings, eyelids.

Generally speaking, always included in my daily symptoms are garden variety avolition and emotional numbness.

Today I just stayed home, did a little cleaning, put together a kitchen shelf, and listened to podcasts. I wanted to get to my spiritual community but I didn’t make it there, which is not unusual these days.

Also, I’m struggling a bit because I had a 3 day weekend which is now coming to an end. It was very relaxing and I enjoyed it. I am sad that it’s ending.

I try not to think about the eventual zoloft taper because not being able to start that for quite some time brings up a lot of anger in me. I am very angry at this gabapentin detour, if it weren’t for that I’d be able to start the zoloft taper. However if it weren’t for the gabapentin, I would have never fully realized the need for the zoloft taper.

It’s rough finding myself in this spot with lack of meaning and life purpose, not where I thought I'd be during what I call, "middle age plus."
  

[BfromNJ]

I know where you are coming from with the panic of being on these drugs, etc.  I can relate to a lot of what you are saying, the numbness, etc.  You are certainly not alone, I'm polydrugged to.  It sucks.   

[ShiningLight]

Well folks, I have lost yet another crown. That makes 4 crowns I've lost in one year since I went on the gabapentin.

The crown shattered. The tooth underneath is brown. I am hoping that's the cement. The most recent tooth required a post because part of the tooth broke off with the crown. That was $1600 last month. Now this one. Both times I was eating soft food.

 

Others on my gabapentin facebook group have reported significant dental problems on this drug as well. I am going to see if I can speed up the taper. I am stable so I am going to decrease tomorrow instead of Thursday. It will have been 13 days. I will continue with 20 mg drops after I stabilize from the previous drop, as tolerated. Maybe once a week.

 

The only good news is that I just got one of those travel credit cards. So it looks like I am going to be getting a lot of points and taking an expensive vacation sooner than I thought.

 

Aside from that, I feel pretty disheartened. How much am I going to have to pay for taking these drugs??? I've paid in dollars. I've paid socially. I've paid spiritually. I've paid with health problems. I've paid with quality of life. I am pissed.

 

 

[ShiningLight]

I am really upset about the dental damage which I presume is ongoing for as long as I’m on the drug, maybe even after I get off I don’t know. It feels tortuous mentally yet it is obviously not safe for me to just stop taking this drug.

 

I sent an email to my neuro who is helping me taper (didn’t put me on the drug but helping me get off) telling him about the dental problems. I said that I keep trying to find ways to make my suffering matter, and asked him if he would consider warning patients of the small chance of dental problems (1.3% or so in short term study after subtracting placebo. I bet it’s more longer term!). He said yes he would.

Short of large scale policy change, which feels unlikely and I don’t have the energy to pursue right now, I can at least try to influence my doctors on a personal level. It was nice to be successful in that.

 

On another subject, I am SO tired of telling my doctors, friends, pharmacist, etc of my reactions and them dismissing it as “rare” or blaming me for being “so drug sensitive.” Even the neuro feels the need to remind me how “drug sensitive” I am in every other email interaction with him. It is annoying and invalidating. These are strong drugs!!! The message seems to be, it’s rare so it doesn’t matter. It’s rare, so it must be your fault for how your body is wired. People: if it’s rare and it happens to you, it’s not rare, it’s 100%.

 

If someone feels the need to label me as “drug sensitive,” that is defining me by some invisible standard person. That is not helpful. To me I’m not “drug sensitive,” I’m just me, with the particular reactions I have. When he says that, it basically has the same impact of saying, “Yeah, but remember how weird you are?” Not helpful.

 

This crownless tooth in my mouth is bothering me. I’m ready for it to be fixed or gone because it’s a constant reminder of the situation. I’m sure if it goes it will be a constant reminder too, but I just hate the way it feels in my mouth right now.

 

On August 6 after I broke the crown, I started making another 20 mg cut. I am having an increase in withdrawal symptoms: increased forgetfulness, increase in hot flashes, transient buzzing sensations in my feet a few times a day.

 

8/5 Monday
6:00 am 90 mg gaba
8:15 am 150 mg zoloft, 100 mg magnesium
10:00 am Mini hot flash. Starts the same but not as severe. Face doesn’t turn beet red, only slightly pink.
10:30 am 90 mg gaba
3:30 pm 90 mg gaba.
8:30 pm 90 mg gaba. Immediate mini hot flash
8:50 pm Intense dull L forearm pain for about 1 minute
10:00 pm 50 mg trazodone
Overall a very stable day. Just at work, a few hot flashes and a little pain. I worked a long day too.

 

8/6 Tuesday

6:15 am  90 mg liquid gaba
8:30 am 150 mg zoloft, 100 mg magnesium
10:45 90 mg gaba
3:00 pm 90 mg gaba
5:15 pm Overwhelm, exhaustion, sad
9:00 pm 85 mg gaba CUT 5 mg
9:30 pm 50 mg trazodone
Very poor, fitful sleep. Woke up at 2:45 am and the rest of the night was on and off sleeping, seems like I had no REM, just dozing off and waking up. Very unpleasant.

 

8/7 Wednesday

6:15 am 85 mg gaba
8:30 am 150 mg zoloft, 100 mg magnesium doctor’s choice brand
10:45 am 85 mg gaba
3:00 pm 85 mg gaba
3:30 pm Getting a little tongue tied at work; used similar, but wrong words twice
4:15 pm Feeling sad and overwhelmed and exhausted.
4:45 pm Get home from work, this is my early day, but I am not really able to make use of the time. I just hang out in bed.
9:00 pm 85 mg gaba
9:30 pm 50 mg trazodone
9:47-9:54 severe hot flash. Beet red, sweating. I think this is due to taking trazodone too close to the gaba. I try to separate them more but sometimes I lose track of time.
Still light sleep, not quite as fitful though.

 

8/8 Wed
6:15 am Wake up. Immediate mild hot flash then took 85 mg gaba. I notice when at rest, my R hand is in a bit of a fist. Not a hard fist, but a soft one. I was doing that when my wd was more severe in the past.
9:30 am 150 mg zoloft, 100 mg mag
11:30 am 85 mg gaba; waited 2 hours after zoloft
3 pm Feeling ill; a bit of nausea, lasts for about half an hour
3:15 pm 85 mg gaba
8:30 pm 80 mg gaba, began another 20 mg cut
9:45 pm Cleaned tub with clorox wipes. Caused a huge hot flash. This was also happening when wd was more severe.
10:30 pm 50 mg trazodone
I am noticing some warning signs of increasing wd symptoms. I think about going back to 85 mg but I will not do it. The teeth.
Oddly despite dose cut I sleep a bit better than last night. Still not great though.

 

8/9
6:30 am 80 mg gaba
8:45 am Mild acid hands feeling for maybe 5 min
8:30 am Hot flash, which reminds me to take 150 mg zoloft
9:30 am 100 mg magnesium
10:00 am Hot flash
10:30 am 80 mg gabapentin... oh wow I just realized I didn’t separate the mag 2 hours
10:45 am Hot flash ... no wonder
12:30 am Weird brief muscle spasm on my inner R knee
3:00 pm 80 mg gabapentin
4:45 pm Driving home from work, feeling very sad, like I want to cry, about my tooth and everything I have lost as a result of these drugs
7:00 pm Vibration in foot for a few seconds, this has happened maybe 5-10 times tonight. I didn’t note the time each time.
8:30 pm 80 mg gabapentin
9:00 pm R calf dystonia
9:15 pm mild hot flash
9:56 pm dystonia in L arch of my foot, R kneecap pain

11:00 50 mg trazodone

 

I will hold until Wed or Thurs at a minimum and then re-evaluate, as I am seeing some increasing signs of trouble. Compared to how I was a few months ago, I feel quite good. The symptoms I have are at the pesky level, but I do recognize them as repeat offenders.

 

I feel lost right now. I had committed myself to a slower taper, but I can’t live with what this is doing to my teeth. It’s devastating. I am feeling pretty good physically despite all these dose reductions. I know I’m very fortunate. At the same time, it’s...eerie. Because I know with gabapentin it can blow up in my face in a heartbeat. I am trying to find the courage to listen to what my body is telling me. I’m trying to reassure myself not to be afraid and to focus on what is going on in this moment, not what I am afraid of. I feel both uncertain and confident at the same time.

 

The uncertainty is wondering if I’m doing the right thing because I know changing my plan is risky. The confidence is feeling a sense of groundedness. Like, OK. I have this new information about my teeth, ie they are likely to keep getting worse. I am going to respond to this new information by increasing the speed of my taper. If that doesn’t work, I will respond to that information by decreasing the speed of my taper again.

The other part of the confidence is that when I tried cutting 50 mg in the past, I learned that was too much for my body. After that, I decided to try 20 mg. And it has worked well for me to this point; my symptoms have been tolerable and I have been stable.

 

I have also been thinking about how resilient I am, and that is a nice thing to think about. I am thinking about my own sense of safety and validation, which comes from inside. It’s helpful to get reinforcement of those things from other people, but I’m having a hard time with that on this issue, so it has to come from me, and I’m kind of in a place where I can give that to myself.

 

I lost my confidence and my sense of efficacy and agency when I crashed after my psychiatrist rx’d the fast taper. Those things are starting to come back by taking responsibility for my own health. When I crashed, I found myself in a game with no rules. The bottom fell out. At first I didn’t even know what the problem was, I thought I had some obscure illness. Now I know what the problem was, and I also have some information about how the game works. There are some signposts on the roadmap.

[Dejavu]

30 minutes ago, ShiningLight said:

People: if it’s rare and it happens to you, it’s not rare, it’s 100%.

Yes, this. 100% this!

 

31 minutes ago, ShiningLight said:

And it has worked well for me to this point; my symptoms have been tolerable and I have been stable

 

32 minutes ago, ShiningLight said:

I have also been thinking about how resilient I am, and that is a nice thing to think about. I am thinking about my own sense of safety and validation, which comes from inside. It’s helpful to get reinforcement of those things from other people, but I’m having a hard time with that on this issue, so it has to come from me, and I’m kind of in a place where I can give that to myself

 

33 minutes ago, ShiningLight said:

I lost my confidence and my sense of efficacy and agency when I crashed after my psychiatrist rx’d the fast taper. Those things are starting to come back by taking responsibility for my own health.

I'm so sorry about the dental issues. I know how that must be messing with your head. And I don't mean at all to minimize it, but look at all the positivity in your post in spite of it all!! You're not just playing the game, you're winning it!💪

[BfromNJ]

You are doing great.  And so what if you are drug sensitive, all the more reason they need to take us seriously, because these drugs do affect us more.    I totally get what you are saying about just wanting this stuff out of our system.  I shudder when I think how long it will take.  But I look at you and i have hope.  I think you have come a long way.  Dental issues or not.  

[ShiningLight]

@Dejavu @BfromNJ Thank you so much for your kindness. It made me start crying because it brought to the surface something I've been feeling: I'm afraid of social rejection if I have to have a bunch of teeth pulled. I had been vaguely aware of that but I hadn't been able to put it into words. I also feel shame about it and just so sad. I also feel self-rejection and I am angry at myself for trying to help myself cope by taking these drugs. Of course the reactions aren’t my fault and I couldn't have known. Like so many of us I trusted the doctors. I just wish I would have thought to research these things online first. I WISH.

It's a tragedy not only for me, but for our whole society. It really is.

I am a little guarded about saying I'm winning at this point... I hope I do well, but I know it remains to be seen.

@bfromnj there is absolutely hope. You will stabilize. And then you might get thrown off again, and then you’ll stabilize. That’s how it goes.  

[ShiningLight]

The other thing that could happen is that I could destabilize my life again, lose my job, and then have no way of paying for the dental work. No guarantee that I will need less dental work by going faster. I have a friend who still had dental problems for some time after going off. What a hot mess.

[ShiningLight]

Yeah, not happy with the trouble. Going to slow it back down.

This is what today has looked like.

 

8/10/19

Sleep feels light still, but slowly getting better.

6:15 am Woke up without alarm. 80 mg liquid gaba. Immediate mini hot flash after I swallowed the gaba
9:05 am 150 mg zoloft, 100 mg magnesium
9:20 am Many small muscle twitches in both feet. Little areas of feet buzz for a second and then stop.
9:30 am Dog barks unexpectedly. I jump.
9:40 am Burning dull pain in L forearm/elbow, lasts maybe 5 seconds
10:00 am Hot bath. Less tolerant of the heat on my skin. My vision also becomes a little blurry while I am in the bathtub.
10:10 am Blow drying my hair. Was combing my hand through my hair with the heat on my hand and daydreaming. Accidentally burned my hand due to lowered pain sensation. Put it under cold water which helped. It is fine now.
10:40 am 80 mg gaba
12:30 pm Met friend for lunch. Had a nice time. Was talking to her about my teeth. She was very kind and sympathetic and asked if there was anything else I could do to help them other than fast taper. I remembered my biotene mouthwash at home.
2:50 pm Used biotene mouthwash
3:00 pm Mini hot flash. I suspect the biotene, although it is not swallowed. Or maybe wd from being due for my dose. But I’m seeing increased chemical sensitivity right now. Last night I had a hot flash from cleaning the bathtub with clorox wipes even though I wore gloves.
3:15 pm 80 mg gaba

I’ve had some fatigue and avolition today too.

I was looking for the profanity thread on this site, as I was thinking I was in a fine place to make a contribution to that thread today. I ran into @ChessieCat ‘s posts on DavidfromTexas’s thread and spent the morning reading about some horrific experiences people are having and was reflecting about slower being faster in the long run. And remembering how nice it is to be able to do things like go to work and get things done at home...

Since February, I’ve cut a total of 1531 mgs of psych drugs covering 3 different drug classes. Most of that amount was from the MD gaba taper before I got here. My total drug footprint has gone from 2,051 mgs/day to 520 mgs a day. If I’m even doing my math right, because I’m a bit foggy right now.

Reading @ChessieCat ‘s posts on DavidfromTexas’s thread made me realize that I, too was feeling panicked, in my case about my teeth. Also I am very angry and scared about it. I wanted to try to see if I would be able to speed it up because I’m not sure if I could live with myself if I end up losing a bunch of teeth, if I didn’t at least try.

The fear is also about the risk of dental infections because I have a history of recurrent clostridium difficile (c diff) gut infections and I do not do well on antibiotics because of that. Antibiotics are very frightening to me because they put me at risk for another bout of c diff. Anyway, back to the present moment. My dentist appt is Tuesday so I will find out more information at that time about my tooth that’s looking bad. Not sure if it’s infected or not. Not sure if crown and post will do the job or if it needs to be extracted.

Somewhere I heard (it may have been here?) that it’s better to spend more energy trying to create resilience, rather than on trying to avoid harm. Because inevitably, harm is going to happen despite my best efforts. That doesn’t mean I shouldn’t be prudent. It means that sometimes I can get so involved in trying to prevent harm that it ends up causing harm.   

 

I really agree that the premature desire to cut is a sign of withdrawal-induced executive brain function impairment, ie judgment and planning problems. 

 

All things considered, I'm ok right now. Just need to get my perspective back. 🐢 🚚

[Dejavu]

After your big trazodone cut, things might get a bit dicey for a while. Maybe not, but be ready just in case. Right now, your symptoms seem tolerable (correct me if I'm wrong). Are you sleeping okay? What other symptoms, if any, have appeared or worsened since you reduced the traz? If you start having issues, we will ask to see your daily notes again, so please continue to keep them.

 

I love the idea of counting the total of milligrams lost. 1531 is an awesome number by which to have reduced your drug load. 

 

I too have apprehension about potential dental problems. I have had considerable dental issues over the years, and I worry about the effects of dental anesthesia/nitrous oxide while I'm trying to stabilize. 

 

Like you, I often wonder why I was selected to go through this strange, painful experience. I still don't have an answer to that one, but I do know this: when I come out the other side, I will be as good as bulletproof, and so will you. There are many good times still to be had, and we will have them. 

[ShiningLight]

Hi Deja, thanks. My sleep has been light with several awakenings in the night since I stopped the trazodone. Seems to be slowly improving. For the first week after the trazodone cut, I had a lot of nausea. That was really about it.  

I also reduced gaba 20 mg, 10 days after the trazodone cut.  Then 2 days later, I reduced the gaba another 20 mg. So yes, I have certainly earned an uptick in symptoms. The symptom uptick I have been experiencing I think is due to the gaba, with the exception of the sleep problems.

Yes, my symptoms are quite tolerable at present. I have learned my lesson--not because of the symptoms that have happened, but because I woke up and realized all I was risking, and realized it wasn't worth it. I have no interest in risking that kind of suffering anymore by trying to go fast.

[ShiningLight]

I’m feeling better today—definitely having less nausea. The difficulty with typing accurately has come back, but it’s mild. I will be in a hold for awhile to stabilize.

 

On the way home from work, I was bemoaning how numb and chemically lobotomized I feel. Then I started thinking, ‘I’m not that numb, sometimes it’s the opposite and I have extremely strong feelings!’

From there, I wondered if—in addition to neuroemotions—part of the reason for the extremely strong feelings is that I can’t feel them when they’re less intense; I’m not aware of them due to the polydrug fog. By the time they break through, they’re huge and I’m blindsided by them. And on top of that, I’m not used to working with emotions since I don’t have the milder forms. It makes me really sad that I feel so numb lately. Honestly other times I’m grateful for it because I don’t have the energy to deal with a lot of emotions right now either. I hope to see the re-emergence of some of my self before a few years from now when this taper will be over.

It’s also possible that some of what I experience as numbness may be just being at an even keel emotionally. I read the info about trazodone and I think that was probably contributing to some anxiety, so cutting that dose may have helped that too.

I had some good news about my tooth—it’s brown because it’s stained. It needs more crown prep so the future crown will hold better. It does not need to be pulled! I’m so happy about that. I’m also happy that I’ll be getting it done next Tuesday because that puts a little more time between my dosage drop and the body/brain stress of the novocaine shot. I’ve become concerned about not developing any more chemical sensitivities. I want to be able to tolerate drugs in case of emergency at the end of this journey, if at all possible.

Hope all are doing well tonight.

[ShiningLight]

Update from me. Overall I'm feeling pretty well. This week I had to work a 12 hour day one of the days. I have to do that every once in awhile and I dread it every time. I think that schedule and the heat kicked things up for me a bit; I had a return of the burning cheek and itchy shoulder blade gabapentin symptoms. It was unpleasant and a little disconcerting, but to be expected, and tolerable. I’ve also had a little return of trazodone withdrawal nausea when I wake up in the morning a few days this week. It’s very short lived, like 10 minutes or so, which I appreciate.
 

I am really enjoying a decrease in anxiety, which I suspect may be related to the decrease in trazodone. I read the trazodone topic and it looks like trazodone puts you to sleep but later causes an increase in anxiety. I used to have horrible anxiety in the evenings when I came home from work. I would obsess about work and not be able to let it go. I did that for years and years, and it affected my employment, causing me to leave jobs in search of something better and less anxiety provoking. 😂 [Ha ha!!!]  I’m thinking that a large part of that may have been the drug. Maybe it was also some kind of withdrawal, because I take the trazodone at night. All that anxiety also affected my energy to engage socially. I was so consumed with worry and it took too much energy.
 

I'm still holding. I'm hoping to make my next gabapentin cut of 5% in a week. But I may wait awhile longer, depending how I feel. I’m still having some minor sleep difficulties from the trazodone drop. My sleep is slowly becoming more restful, but I do still wake up about once a night. I can go right back to bed.

This is my third month back full time at work. Now that I’m solidly working, one of the real challenges for me is figuring out some kind of social engagement, recreation, and pleasure. For the past few weeks, I’ve been successful at planning to meet up with a friend once on the weekend, and that has been my goal. This weekend I didn’t plan anything. I didn’t look ahead enough and a lot of times at the last minute people are busy. So I’m not sure what I’m going to do, but I need to do something for myself.
 

I really struggle with planning to do fun and novel things to recharge myself. It’s that apathy. Yet I suffer when I don’t have fun. It’s unrealistic to expect myself to keep putting out so much energy when I don’t have good stuff coming in. I've probably already said all this on here before.
 

The other thing I’ve been thinking about is that I keep feeling like I want to stop going to therapy. My therapist was gone these past 2 weeks and I didn’t miss it. I find therapy really irritating now, just the idea that I would go to someone else who is infused with this kind of power or so called authority figure. I’ve had so much therapy over the years and I’m just tired of it. It feels like such a false pretense. Yet I know I need some accountability. That’s the main way therapy is helpful to me right now.
 

I had been going to a brain injury support group and that was a really great group. I haven’t been able to return yet since I’ve gone back to work because it’s so hard to sit after a long day at work. I feel that I got so much more out of that than going to therapy though. I feel that a group is a much better fit for me than individual therapy because I am too isolated. Just talking to one person one on one is not the biggest help for me right now. It’s just more isolation to me. My time is very valuable and I resent the 40 minutes round trip in the car and the time at therapy. Maybe I will start going every other week as a kind of middle ground.
 

Also, I think my therapist is expecting me to do some really deep work and I don’t want to do that right now. I’ve told her that I’m withdrawing and I don’t want to do that right now. But I think she kind of feels like, what am I working on then. I am grateful to her because she encouraged me to try to go back to work. I might have lost my job had it not been for her. I kind of want to keep her in my pocket in case of emergency but not commit right now. That’s how I feel, but things don't always work well with that approach.

This morning as I drove in to work, I felt so grateful. Just to be in the car, driving to work, doing the most ordinary thing, with nothing wrong other than being a bit tired. There is no emergency or crisis right now, and it is very nice.

 

Edited August 24, 2019 by ShiningLight
paragraph spacing

[ShiningLight]

I'm in a little wave. The neuropathic pain has returned. It was totally gone there for awhile.  Also, last night I woke up twice when the pattern lately has been once. And over the weekend I couldn't do much at all. I felt totally lackluster and spent a lot of time in bed doing random, waste of time stuff like watching YouTube videos on retiring abroad. 😂 There's nothing wrong with retiring abroad but I wasn't serious about it. I was aware that it was a waste of time while I was doing it which made it feel bad. Then Sunday I didn't go to spiritual service although I really could have benefited from time around people. I did have lunch with a friend on Saturday. Today I was ecstatic to go back to work to feel productive. 

 

The wave is due to a number of things. Too many drug changes in the last month. Getting off faster is always getting off more slowly. Also forgot my magnesium at work over the weekend. Also, I had some liquid dose microvariations, which I used instead of remeasuring. Now I'm going to  empty 2 weeks of doses and remeasure them because I'm not sure which ones are correct. When I line them up next to each other one they are not all on the same level.

 

I find it a bit difficult to get an accurate dose in liquid. I have a 1 mL syringe but it's very difficult to see the marks. I think I need to get a magnifying glass. Plus I was hitting the last part of the syringe against the side of some of the bottles and not others, causing the last drop to come out in some and not others. I took a look at the liquid topic and realized I need to be more consistent, careful, and disciplined. So I am fixing that. I suspect I rattled my brain a bit with a few mgs here and a few mgs there. 

 

What an act of self love this tapering is. So much work and planning goes into it. I never knew the brain is so delicately balanced and then something seemingly minor makes you realize how fragile it all is, by what I have experienced myself and the experiences that I'm reading from others. The brain is trying to do so much behind the scenes.

 

 

[ShiningLight]

Oh yeah, and I added flonase which I'm supposed to start taking this time of year to try to avoid getting a sinus infection in the fall/winter. Just looked it up here. Bad news. I will stop it. That's probably what's causing my eyes to be so sunken, and what caused the eye pain when I moved my eyes. Wow. I don't know why I didn't think of that before.

[ShiningLight]

Feel noticeably better with stopping the flonase and redrawing the gabapentin doses for consistency. Only woke up once in the night. Feeling on more even ground emotionally. Made plans with a friend to see a movie on the weekend. Have a long weekend and determined not to spend it bored and alone!

[Carmie]

Glad to hear you’re feeling better after stopping the Flonase ShiningLight, 

 

It’s amazing how sensitive we are to everything when going through withdrawals. 

 

Good on you for remeasuring your liquid meds as well, seeing you didn’t  think they were that accurate. It’s always better to be safe than sorry. I’ve had times where my brain fog was so bad that I wasn’t sure if I’d put the correct amount of water in my water titration and I just started again too. 

 

Hope the magnifying glass works and you can see the marks better too. 

 

Take care, sending hugs🤗

[ShiningLight]

Hi @Carmie thanks so much for the encouragement. Even though I've been going pretty well compared to my experiences earlier this year, it is so nice to have encouragement in this marathon. Hugs to you too!

[ShiningLight]

Title: A Primer on Why ShiningLight is Quitting Therapy

 

I did end up deciding to fire my therapist tonight. I have been thinking about this for the past few weeks. I feel very happy about it.

Essentially, it wasn't really worth my time because on the most basic level, I just don't want to be in therapy right now. Good reason to quit, right? 😂 She didn't seem to understand the withdrawal despite my explanations and seemed to keep expecting me to talk about deep stuff which is not currently helpful to me...I'm trying to keep things on a steady emotional keel and don't need to call up and re-experience a bunch of things that I already worked on years ago anyway.

 

I did tell her a few times I don't want to talk about that, and she said she didn't know if it was because I felt 'guarded' or what. I clearly explained to her that it's because I'm going through the wd. But the fact that this kept coming up showed me that she never really got it. I must have told her at least 5 times out of the maybe 10 or 15 sessions I had.

 

I also came to the conclusion that it wasn’t worth my time and money to go to therapy to just give her the withdrawal report. Especially since she never really understood. I can do that online or with friends. At the end of my meeting with her, she asked me what I would like to work on when I got off the drugs. This to me was a totally pointless question. I mean, this is like 8-10 years away at least! I had already told her I didn't want to engage around those things and she's now asking me to guess about what I would want to work on in the future. I told her that I wouldn't know until I got there, because this was probably years away. I told her that I didn't know who I was or how I felt without the drugs, so how could I know what I would want to work on at that point? She looked surprised, as if I'd never told her it would take years before. And I had. If not with the gabapentin (but certainly yes now), certainly then with the zoloft after it.

 

Looking back, there was definitely a theme with her that she didn't seem to quite get what I was telling her the first time, and would be very persistent in trying to see it through with her viewpoint. She was not in sync with me.

 

How did I end up in therapy if I didn't want to talk about deep stuff, you may ask. Well, she was initially helpful when I started seeing her in April because I was in crisis at that time due to the wd. However, even then, as horrible as I was feeling, I had mixed feelings about being in therapy! I kept feeling like, 'this is dumb.'

 

I have thought a lot about how it might not be a good idea to quit because what if I have a crisis. Well, if I have a crisis I will get through it, and I will find a therapist at that time.  It’s not a good enough reason to keep one on payroll now because something may or may not happen in the future. I also have an in person support group that I can go to, which is better for me because it involves interaction with peers. There’s a professional facilitator, but it’s different.

 

I also wanted to quit therapy because it’s a hardship to go on a weeknight. I don’t have a lot of time or energy, and what I have of both is very precious to me. I’d rather spend my time with my dogs or even doing something social, if I could make that happen.

 

I find that my paradigm has really shifted since I crashed last winter on the violent gabapentin taper. I lost faith in the “mental health” system. Too often, it strips people of their intrinsic power and dignity. Too often, it is “I doctor” treating “you patient.” Depending on how it is implemented, it is typically based on multiple false premises. For example: “I, the doctor, therapist, etc, know better than you what’s best for you.” [most therapists are a bit better at it than that, but I do think there’s often still an undercurrent of that] And don’t even get me started on all that neurotransmitter snake oil diabetic-insulin garbage.  

 

I couldn’t stand going into the therapy office waiting room which has an electric stone waterfall thing on the wall and this forced peaceful atmosphere with “inspirational” things like “dream” blah blah blah with sound screens and people in the waiting room not looking at each other...I just found it to be kind of dehumanizing and fake. I can’t take it anymore.

 

I feel that the movement to “destigmatize mental health” is all wrong. Abolish the entire concepts! That’s what really needs to happen. “Mental illness” is nothing but normal human experiences along a continuum. It seems like “mental illness” is so often diagnosed in women and others who have suffered social injustices, who maybe are more sensitive than other people, don’t fit neatly in a box, and find it intolerable to live in a society that has drifted (and at times leapt) away from important values such as community, equality, compassion, connection, and spirituality, in favor of shopping and designer coffee. True psychopaths notwithstanding, there is not something wrong with the majority of people who have been labelled as “mentally ill.” There is something right with them! There is in fact something wrong with a rigid society that can't accommodate sensitive, creative people.

 

I do believe it's Dr. Breggin who says, dow much sense does it make to say, ‘I can’t function in this [backwards] society, so I’m going to disable my brain with these medications so I can do what’s expected of me.’ Yet millions of people do this every day; they just think about it differently. And they think about it how the drug companies campaign for them them to think about it.

 

Problems of living and behavior, aka “Mental illness,” have been taken out of the larger social context, to signify trouble at a private, individual level in any one single person’s brain. Wrong! People do not exist in a vacuum. We exist in the larger sociopolitical cultural context.

 

It’s exactly the same errant approach that is taken with physical health, at least in the US. Physical health and “wellness” is advertised and sold to us as individual health choices, like exercise, choosing to eat healthy food, etc. Those things certainly have a big part in health, but the conversation seems to stop there, and that’s missing some crucial points. Things such as poverty (food deserts, for example), racism, violence, childhood trauma, social policy, and government protection for clean water and air, play a larger determination in health than micro level individual choices. Because it’s hard to eat healthy if you live in a food desert and hard to get medical care if you can’t afford insurance. I think someone has already said that here...

 

If I sound hopping mad, it’s because I am. This is all so backwards.

 

Which is why tonight I’m celebrating no longer being a psychotherapy "client" anymore. There are times in my life when I benefitted from it, but right now is not one of them and for me personally, it just misses the mark now. I may have lost decades of my life to these drugs, but I still have my ability to think independently!

[ShiningLight]

Wave continues to slowly improve. No neuropathic cheek pain today for the first time in a few weeks!  Makes me happy because for awhile there I was going backwards with my symptoms, seeing the re-emergence of symptoms that I had when I was in much more distress. And that scared me. Hot flashes are almost back to WD normal level.

 

I wrote MD re the buzzing sensations and he said yes, it sounds like internal tremors. I told him I'm going to hold for a bit and he said yes, hold the dose. Internal tremors are a little better today. Stabilizing, but I can tell my nervous system is pretty delicately balanced. 

 

I have a 4 day weekend and I have managed to make some plans with friends so I'm looking forward to it. I'm trying to bank my time off work and it's been a real struggle so I've been waiting for this weekend for awhile.

 

 

[Len189]

Glad to hear you're doing better ShinigLight and that the waves are improving. Enjoy your weekend!

[BfromNJ]

Hello.  Good news on feeling better!  Enjoy your weekend! 

[ShiningLight]

Feeling very agitated and upset right now. I just did some legal planning--advance directive, estate planning, etc. I have been putting it off for months. Because I am really struggling to find people to help if I can't speak for myself. I have my sister as primary, and I can ask her son when he gets older. And I have a good friend as backup. But there are big holes in my support system and I am really upset about it. This feels very haphazard and I am feeling very triggered overall by how alone I feel in my life. I want a richer circle of friends and a better life in general, yet I also feel very limited energetically towards what I can do about getting there.  Agh!!! So frustrating.

[ShiningLight]

Ok...spoke to a friend. Feeling better. I hear about a lot of these types of situations and I was catastrophizing and projecting. It's good i will have something in place even if it's not perfect 

[Len189]

I'm so glad to hear that it worked out for you and that you're feeling better!

[ShiningLight]

Thanks @Len189, doing well enough! Hot flashes are decreasing in frequency as well as intensity and length of time. Instead of turning beet red, I turn beet pink now. 😃 Most bothersome things right now are ongoing fatigue and sleep that isn't very restful. But it's also very hot out, I'm not exercising much at all, and I'm sure that plays a role in fatigue and sleep. Just can't wait for cooler weather.

🐢🐢🐢🐢

[composter]

Hi there I wanted to drop by and say that I really appreciate your posts of support on other peoples threads. You have such a beautiful and gentle way of expressing things.

 

I also share so many of the same views as you re: true health and wellness happens in the context of community, togetherness, and more of a traditional way of life, rather than commercial or lifestyle choices. And modern society simply does not promote these things like traditional societies and cultures have. 

 

I know you are looking for some support outside of SA. I'm located in the Southern CA area. Feel free to send me a PM and maybe we can set up a phone call.

[Len189]

I concur with composter! Thank you for all the support you provide members.

[ShiningLight]

I'm glad if I am helpful. I will, Composter. More later.

[ShiningLight]

17 hours ago, Len189 said:

I concur with composter! Thank you for all the support you provide members.

 

What I didn't have time to say yesterday is that you are my peers. We have to lend a hand when things are going well. 

 

I am enjoying a bit of a reprieve right now thank god. We never know what this process holds. I hope I don't sound like I'm holding myself out as some huge success. I've made some mistakes and taken some untoward risks. And I've been lucky--with some of the unnecessary risks I took, it could have gone much worse. In short, I'm just like you. ❤

 

 

[Len189]

So glad that you have found some stability at the moment. I hope it lasts! We're all in this together.

[Carmie]

So happy you’re having a reprieve ShiningLight. Yay🎉🎉🎉

[ShiningLight]

@Len189 @Carmie thank you for your kind comments. It's such a morale boost to feel seen here. Withdrawal is truly an invisible disability. I feel invisible and lonely out there.

 

I've been fortunate so far as it seems that my healing pattern with the gabapentin has been relatively linear. I cut, stay the same for awhile, and slowly improve. There haven't been a lot of unpredictable windows and waves; the exacerbations have an identifiable source which makes it easier. 

 

I'm holding now just for a bit of a break and to strengthen and solidify the gains I've made. I am so tired of the severe hot flashes and being uncomfortable. Not in a hurry to kick it up again right now.

 

When I feel bummed that I'm still on this drug, I remind myself that I'm on a "low" dose as the max gets up into the thousands of mgs.