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ShiningLight: brain injury with gabapentin WD want off others


ShiningLight

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On 10/12/2019 at 6:36 AM, composter said:

Best not to make decisions (to leave, or to stay) out of fear, but to make decisions based on what will serve you best for your happiness and well-being. Be kind to yourself

 

Hello Shining Light,

 

I am very sorry about your bad night, pain and missing work. I have been thinking of you and wondering how your dystonia is.

 

What composter said puts things in perspective - what meets your needs and will be best for your happiness. Above all - be kind to yourself. Sometimes stepping back and think of yourself in the shoes of someone you love and who is suffering - and how you would  advise them if they were in your situation.

 

Giuilietta💗

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  • Mentor
11 hours ago, Len189 said:

 A temporary setback on the road to recovery, Im sure.

 

Len, the thing is, I'm not so sure. It has me worried because it's been getting worse since it started in earnest. It may not be temporary or it may take a long time to get better. I've had dystonia for years only I didn't know that's what it was. Currently it is accelerating. I sincerely appreciate the warm wishes though! :)

Now: 100 mg Zoloft am, 50 mg Trazodone.  Daily drug burden decreased from 2050 in 2018 mg to 150 mg 🐢🐢

Zoloft: 1/24/23 increased to 100 mg after suicide attempt 9/17/22 cut 6 mg, 8/14/22 cut 6.5 mg, 5/7/22 cut 12.5 mg 3/20/22 cut 12.5 mg 10/26/21 cut 6 mg 10/17/21 cut 5 mg, 9/17/21 Cut 3 mg,  9/13/21 cut 4 mg, 8/29/21 Cut 2 mg 8/8/21 Cut 3 mg  7/30/21 Zoloft: Converted 25 mg to liquid. Also take 100 mg pill & 25 mg pill=150 mg total
🌞 Feb 28, 2021 0 mg Gapapentin 2021 Gaba each dose 4x/day: Feb 27 7 mg (one dose only), Feb 10, 7 mg, Jan 14 10 mg 2020 Current taper schedule from Aug 30-present: drop 8 mg every 2-3 weeks. Aug 20 31 mg, Aug 18, 33 mg, July 29, 35 mg, July 23 38 mg, July 22 40 mg Jun 24 42 mg, Jun 15 44 mg, Jun 9 48 mg, May 22 50 mg, May 14 54 mg, May 7 56 mg, Apr 16 58 mg, Mar 28 60 mg, Mar 18 62 mg. Feb 26 64 mg. Feb 19, 66 mg. Jan 23, 70 mg. 2019 Dec 19, 72 mg. Nov 14 ,76 mg. Aug 8, 80 mg. Aug 6, 85 mg. Jul 26, 90 mg. Jul 11, 95 mg.

Jul 16 trazodone from 100 to 50 mg.

Jun 17-July 10 Slowly changed gab fr pill to liquid at same dose 100 mg 4x/d.

Apr 24 Stopped klon!!! 🌞 Apr 4  Decreased gaba to 400 mg (100 mg 4x/day)-Apr 4, 2019   0.25 klon March 11  Klonopin .5 mg twice daily, varied dose til Apr 15. Started Klon fast taper 25%, short use

Mar 16, 450 mg gaba 3x/day cut 600 mg--not exact!--updose after learning w/d

Feb 20, 2019 1800 mg gabapentin; MD taper; off 3 days=mvt disorder & autonomic instability. July 2018 temazepam 15 mg 1-2; prn several x/wk til Jan/Feb 2019 when cold turkey, flu illness for months

July 2018 started gabapentin 100 3x/day; titrated up to 1800 mg (600 3x/day)

Buspar, I forget how much, 2 pills a day Jan 2017-July 2018 cold turkey. On Zoloft since maybe 2004? After trying many.

*I speak from my experience. Nothing I say is medical advice. I'm not a doctor.

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Hello ShiningLight,

 

Are you feeling better today and how was your sleep?

 

Did you go for a consultation / 2nd / 3rd opinion on this? I don't remember.

 

Big hug

 

🤗

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  • Mentor

Doing better today thanks. Slept better tho still iffy. Can cope today. Legs are better. On my way to work soon.

Now: 100 mg Zoloft am, 50 mg Trazodone.  Daily drug burden decreased from 2050 in 2018 mg to 150 mg 🐢🐢

Zoloft: 1/24/23 increased to 100 mg after suicide attempt 9/17/22 cut 6 mg, 8/14/22 cut 6.5 mg, 5/7/22 cut 12.5 mg 3/20/22 cut 12.5 mg 10/26/21 cut 6 mg 10/17/21 cut 5 mg, 9/17/21 Cut 3 mg,  9/13/21 cut 4 mg, 8/29/21 Cut 2 mg 8/8/21 Cut 3 mg  7/30/21 Zoloft: Converted 25 mg to liquid. Also take 100 mg pill & 25 mg pill=150 mg total
🌞 Feb 28, 2021 0 mg Gapapentin 2021 Gaba each dose 4x/day: Feb 27 7 mg (one dose only), Feb 10, 7 mg, Jan 14 10 mg 2020 Current taper schedule from Aug 30-present: drop 8 mg every 2-3 weeks. Aug 20 31 mg, Aug 18, 33 mg, July 29, 35 mg, July 23 38 mg, July 22 40 mg Jun 24 42 mg, Jun 15 44 mg, Jun 9 48 mg, May 22 50 mg, May 14 54 mg, May 7 56 mg, Apr 16 58 mg, Mar 28 60 mg, Mar 18 62 mg. Feb 26 64 mg. Feb 19, 66 mg. Jan 23, 70 mg. 2019 Dec 19, 72 mg. Nov 14 ,76 mg. Aug 8, 80 mg. Aug 6, 85 mg. Jul 26, 90 mg. Jul 11, 95 mg.

Jul 16 trazodone from 100 to 50 mg.

Jun 17-July 10 Slowly changed gab fr pill to liquid at same dose 100 mg 4x/d.

Apr 24 Stopped klon!!! 🌞 Apr 4  Decreased gaba to 400 mg (100 mg 4x/day)-Apr 4, 2019   0.25 klon March 11  Klonopin .5 mg twice daily, varied dose til Apr 15. Started Klon fast taper 25%, short use

Mar 16, 450 mg gaba 3x/day cut 600 mg--not exact!--updose after learning w/d

Feb 20, 2019 1800 mg gabapentin; MD taper; off 3 days=mvt disorder & autonomic instability. July 2018 temazepam 15 mg 1-2; prn several x/wk til Jan/Feb 2019 when cold turkey, flu illness for months

July 2018 started gabapentin 100 3x/day; titrated up to 1800 mg (600 3x/day)

Buspar, I forget how much, 2 pills a day Jan 2017-July 2018 cold turkey. On Zoloft since maybe 2004? After trying many.

*I speak from my experience. Nothing I say is medical advice. I'm not a doctor.

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  • Mentor

Yes, I was so happy to be able to go to work today. I do feel that I had a bit of the cold shoulder from people I inconvenienced by being out. I have yet to face the wrath of my supervisor, she was out of the office yesterday. None of the supervisors that I contacted regarding my MD appt and my sick call replied to my email or text at all. I thought maybe 'thanks for letting me know' might be in order. Whatever.

 

It's especially sweet because I have a planned day off tomorrow. 🏄🏼‍♀️

Now: 100 mg Zoloft am, 50 mg Trazodone.  Daily drug burden decreased from 2050 in 2018 mg to 150 mg 🐢🐢

Zoloft: 1/24/23 increased to 100 mg after suicide attempt 9/17/22 cut 6 mg, 8/14/22 cut 6.5 mg, 5/7/22 cut 12.5 mg 3/20/22 cut 12.5 mg 10/26/21 cut 6 mg 10/17/21 cut 5 mg, 9/17/21 Cut 3 mg,  9/13/21 cut 4 mg, 8/29/21 Cut 2 mg 8/8/21 Cut 3 mg  7/30/21 Zoloft: Converted 25 mg to liquid. Also take 100 mg pill & 25 mg pill=150 mg total
🌞 Feb 28, 2021 0 mg Gapapentin 2021 Gaba each dose 4x/day: Feb 27 7 mg (one dose only), Feb 10, 7 mg, Jan 14 10 mg 2020 Current taper schedule from Aug 30-present: drop 8 mg every 2-3 weeks. Aug 20 31 mg, Aug 18, 33 mg, July 29, 35 mg, July 23 38 mg, July 22 40 mg Jun 24 42 mg, Jun 15 44 mg, Jun 9 48 mg, May 22 50 mg, May 14 54 mg, May 7 56 mg, Apr 16 58 mg, Mar 28 60 mg, Mar 18 62 mg. Feb 26 64 mg. Feb 19, 66 mg. Jan 23, 70 mg. 2019 Dec 19, 72 mg. Nov 14 ,76 mg. Aug 8, 80 mg. Aug 6, 85 mg. Jul 26, 90 mg. Jul 11, 95 mg.

Jul 16 trazodone from 100 to 50 mg.

Jun 17-July 10 Slowly changed gab fr pill to liquid at same dose 100 mg 4x/d.

Apr 24 Stopped klon!!! 🌞 Apr 4  Decreased gaba to 400 mg (100 mg 4x/day)-Apr 4, 2019   0.25 klon March 11  Klonopin .5 mg twice daily, varied dose til Apr 15. Started Klon fast taper 25%, short use

Mar 16, 450 mg gaba 3x/day cut 600 mg--not exact!--updose after learning w/d

Feb 20, 2019 1800 mg gabapentin; MD taper; off 3 days=mvt disorder & autonomic instability. July 2018 temazepam 15 mg 1-2; prn several x/wk til Jan/Feb 2019 when cold turkey, flu illness for months

July 2018 started gabapentin 100 3x/day; titrated up to 1800 mg (600 3x/day)

Buspar, I forget how much, 2 pills a day Jan 2017-July 2018 cold turkey. On Zoloft since maybe 2004? After trying many.

*I speak from my experience. Nothing I say is medical advice. I'm not a doctor.

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15 hours ago, ShiningLight said:

Yes, I was so happy to be able to go to work today. I

 

That is terrific. You had distractions and able to focus on something other than dystonia & WD complications.   I'm sure a number of your coworkers and others were very happy to see you.  :)  Try not to let your antagonistic supervisor and coworkers  get to you.

 

How did your MD appointment go?  What kind of feedback did you get and next steps for medication management?

 

 

 

 

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He doesn't even have any openings until Dec. But that's ok. I don't care. I'm not sure what he can do for me. I just need a diagnosis so I can know what this is and get FMLA if I have a problem again. I'd rather not take medication for obvious reasons.

 

Actually staying home was very helpful. I woke up feeling better; it wasn't work that made me feel better. But I was glad to go in yesterday.

Now: 100 mg Zoloft am, 50 mg Trazodone.  Daily drug burden decreased from 2050 in 2018 mg to 150 mg 🐢🐢

Zoloft: 1/24/23 increased to 100 mg after suicide attempt 9/17/22 cut 6 mg, 8/14/22 cut 6.5 mg, 5/7/22 cut 12.5 mg 3/20/22 cut 12.5 mg 10/26/21 cut 6 mg 10/17/21 cut 5 mg, 9/17/21 Cut 3 mg,  9/13/21 cut 4 mg, 8/29/21 Cut 2 mg 8/8/21 Cut 3 mg  7/30/21 Zoloft: Converted 25 mg to liquid. Also take 100 mg pill & 25 mg pill=150 mg total
🌞 Feb 28, 2021 0 mg Gapapentin 2021 Gaba each dose 4x/day: Feb 27 7 mg (one dose only), Feb 10, 7 mg, Jan 14 10 mg 2020 Current taper schedule from Aug 30-present: drop 8 mg every 2-3 weeks. Aug 20 31 mg, Aug 18, 33 mg, July 29, 35 mg, July 23 38 mg, July 22 40 mg Jun 24 42 mg, Jun 15 44 mg, Jun 9 48 mg, May 22 50 mg, May 14 54 mg, May 7 56 mg, Apr 16 58 mg, Mar 28 60 mg, Mar 18 62 mg. Feb 26 64 mg. Feb 19, 66 mg. Jan 23, 70 mg. 2019 Dec 19, 72 mg. Nov 14 ,76 mg. Aug 8, 80 mg. Aug 6, 85 mg. Jul 26, 90 mg. Jul 11, 95 mg.

Jul 16 trazodone from 100 to 50 mg.

Jun 17-July 10 Slowly changed gab fr pill to liquid at same dose 100 mg 4x/d.

Apr 24 Stopped klon!!! 🌞 Apr 4  Decreased gaba to 400 mg (100 mg 4x/day)-Apr 4, 2019   0.25 klon March 11  Klonopin .5 mg twice daily, varied dose til Apr 15. Started Klon fast taper 25%, short use

Mar 16, 450 mg gaba 3x/day cut 600 mg--not exact!--updose after learning w/d

Feb 20, 2019 1800 mg gabapentin; MD taper; off 3 days=mvt disorder & autonomic instability. July 2018 temazepam 15 mg 1-2; prn several x/wk til Jan/Feb 2019 when cold turkey, flu illness for months

July 2018 started gabapentin 100 3x/day; titrated up to 1800 mg (600 3x/day)

Buspar, I forget how much, 2 pills a day Jan 2017-July 2018 cold turkey. On Zoloft since maybe 2004? After trying many.

*I speak from my experience. Nothing I say is medical advice. I'm not a doctor.

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December 15 is 2 months away. I guess you may be on the cancellation list or perhaps find another movement disorder specialist (if that is who you consult with?).

 

It sounds like your work situation is generally stressful. From personsal experience - stress exacerbates my  health issues. :)  I have been on SSDI for a few years and for a period of that time worked part-time - that was good. I had so wanted to get a job this year. Get my own apartment (again). WD threw a wrench into this.

 

Both our lives are copmlicated by WD, work, and where to live. SSDI (same as retirement income at full re tirement age) doesn't cover much. 1/4 of my income goes to medical insurance premiums alone. Eke. No wonder people retire abroad.

 

I hope you are feeling well today and do somethign nice for yourself.

 

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  • Moderator Emeritus

Hello Shining, thinking of you.

 

I was able to get FMLA for IBS even though IBS is, I think, a symptom of withdrawal for me. It has worked out, I've been able to use it a few times for days where I just needed to stay home and quiet. But at my work we have a small team and we have to cover 24/7/365 so when someone calls in sick it can be a hassle to find coverage, so I only use it sparingly. All that to say, I can relate. I'm so sorry you're dealing with dystonia, though. 😞

 

Enjoy your weekend and do what G says, do something nice for yourself.

Started on Prozac and Xanax in 1992 for PTSD after an assault. One drug led to more, the usual story. Got sicker and sicker, but believed I needed the drugs for my "underlying disease". Long story...lost everything. Life savings, home, physical and mental health, relationships, friendships, ability to work, everything. Amitryptiline, Prozac, bupropion, buspirone, flurazepam, diazepam, alprazolam, Paxil, citalopram, lamotrigine, gabapentin...probably more I've forgotten. 

Started multidrug taper in Feb 2010.  Doing a very slow microtaper, down to low doses now and feeling SO much better, getting my old personality and my brain back! Able to work full time, have a full social life, and cope with stress better than ever. Not perfect, but much better. After 23 lost years. Big Pharma has a lot to answer for. And "medicine for profit" is just not a great idea.

 

Feb 15 2010:  300 mg Neurontin  200 Lamictal   10 Celexa      0.65 Xanax   and 5 mg Ambien 

Feb 10 2014:   62 Lamictal    1.1 Celexa         0.135 Xanax    1.8 Valium

Feb 10 2015:   50 Lamictal      0.875 Celexa    0.11 Xanax      1.5 Valium

Feb 15 2016:   47.5 Lamictal   0.75 Celexa      0.0875 Xanax    1.42 Valium    

2/12/20             12                       0.045               0.007                   1 

May 2021            7                       0.01                  0.0037                1

Feb 2022            6                      0!!!                     0.00167               0.98                2.5 mg Ambien

Oct 2022       4.5 mg Lamictal    (off Celexa, off Xanax)   0.95 Valium    Ambien, 1/4 to 1/2 of a 5 mg tablet 

 

I'm not a doctor. Any advice I give is just my civilian opinion.

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Hello! I am just stopping by to give you my support! I want to thank you for visiting my thread and helping me even while you are suffering too! ❤

I know it's not easy going through this pain. You are strong!  

Gemma92's signature(now Gem92) (added in by mod mmt 4/23/22)

90s and 2008:Prozac for a year

2016:ADHD drug for a few months CT 2017:Right thyroid removed. 

May-June 2018: Lexapro 10-20mg. July 4th 2018 Lex CT and took Penicillin, Z-pack.

August 2018: 3rd antibiotic and Effexor for 5 days CT. 

September 2018: Lexapro 5mg (CT after month) Ativan 1-.5mg(CT after 2 weeks) and Hydroxyine 50mg (2 weeks) SEVERE REACTIONS AND SEVERE WITHDRAWAL

October 2018: Ashwahganda 2 weeks, Probiotics 2 weeks. Mirt 15mg 6 days CT Oct- Nov 2018: gaba gummies, cbd oil, magnesium. December 2018: Mirt 7.5mg, 15mg, 30mg, Zyprexa 2.5mg, 5mg for 1 week back to 2.5mg. 4th antibiotic used. Hydroxyine. Jan 2019: Mirtazapine 26.5mg. Different brands used when hospitalized. Hydroxyine.

Feb 2019: Mirtazapine 22.5mg, 15mg. Zyprexa 2.5mg CT. Prozac 1 pill, Trazadone 4 pills, Hydroxyine few pills, INJECTED with steroids, antibiotics and pain killers for 2 days. Took high doses of benadryl a few times, few more pain killers

June 2019: Mirt 14.5mg-13.5mg Sept 2019: 13mg, 12mg, sep 25th 11 mg. 
4/22/22- 6.3mg (Tapering between 2 and 3% every 2 weeks). 11/27/2022- 5.4mg 
1/8/23- 5.25mg 1/30/23-5.2mg 2/22/23-5.15mg 3/10/23-5.1mg 4/4/23-5.05mg 4/16/23-5mg

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  • Mentor

@Guilietta @Rhiannon @Gemma92

 

Thanks for the support and well wishes! Rhi, that's what I'm hoping for too, just a few days/hours to use here and there when it's at its worst. I really don't want to go back into the healthcare system, but I do need this. I really loathe asking for time off work from the MD. I've had some very bad experiences with suspicion and judging me. So I really dread this. I am actually going outside my HMO to get a note from a different doctor because my HMO is very reluctant to give time, although I do have a qualifying condition...I just don't want to get in a power struggle with them about it. And then, they are suspicious and judgey if you go outside the system. There's no winning.

 

One nice thing is that the internal tremors have lessened now. I still have the dystonia, but the buzzing has improved a lot. That's nice because that was so irritating.

Now: 100 mg Zoloft am, 50 mg Trazodone.  Daily drug burden decreased from 2050 in 2018 mg to 150 mg 🐢🐢

Zoloft: 1/24/23 increased to 100 mg after suicide attempt 9/17/22 cut 6 mg, 8/14/22 cut 6.5 mg, 5/7/22 cut 12.5 mg 3/20/22 cut 12.5 mg 10/26/21 cut 6 mg 10/17/21 cut 5 mg, 9/17/21 Cut 3 mg,  9/13/21 cut 4 mg, 8/29/21 Cut 2 mg 8/8/21 Cut 3 mg  7/30/21 Zoloft: Converted 25 mg to liquid. Also take 100 mg pill & 25 mg pill=150 mg total
🌞 Feb 28, 2021 0 mg Gapapentin 2021 Gaba each dose 4x/day: Feb 27 7 mg (one dose only), Feb 10, 7 mg, Jan 14 10 mg 2020 Current taper schedule from Aug 30-present: drop 8 mg every 2-3 weeks. Aug 20 31 mg, Aug 18, 33 mg, July 29, 35 mg, July 23 38 mg, July 22 40 mg Jun 24 42 mg, Jun 15 44 mg, Jun 9 48 mg, May 22 50 mg, May 14 54 mg, May 7 56 mg, Apr 16 58 mg, Mar 28 60 mg, Mar 18 62 mg. Feb 26 64 mg. Feb 19, 66 mg. Jan 23, 70 mg. 2019 Dec 19, 72 mg. Nov 14 ,76 mg. Aug 8, 80 mg. Aug 6, 85 mg. Jul 26, 90 mg. Jul 11, 95 mg.

Jul 16 trazodone from 100 to 50 mg.

Jun 17-July 10 Slowly changed gab fr pill to liquid at same dose 100 mg 4x/d.

Apr 24 Stopped klon!!! 🌞 Apr 4  Decreased gaba to 400 mg (100 mg 4x/day)-Apr 4, 2019   0.25 klon March 11  Klonopin .5 mg twice daily, varied dose til Apr 15. Started Klon fast taper 25%, short use

Mar 16, 450 mg gaba 3x/day cut 600 mg--not exact!--updose after learning w/d

Feb 20, 2019 1800 mg gabapentin; MD taper; off 3 days=mvt disorder & autonomic instability. July 2018 temazepam 15 mg 1-2; prn several x/wk til Jan/Feb 2019 when cold turkey, flu illness for months

July 2018 started gabapentin 100 3x/day; titrated up to 1800 mg (600 3x/day)

Buspar, I forget how much, 2 pills a day Jan 2017-July 2018 cold turkey. On Zoloft since maybe 2004? After trying many.

*I speak from my experience. Nothing I say is medical advice. I'm not a doctor.

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13 minutes ago, ShiningLight said:

just a few days/hours to use here and there when it's at its worst.

 

I hope the FMLA comes through for you. Just knowing it is there will relieve stress. I was / am apprehensive about needing to take a day off here, there, etc. for medical reasons - worse was saying I needed to take a day off. 😕

 

19 minutes ago, ShiningLight said:

One nice thing is that the internal tremors have lessened now. I still have the dystonia, but the buzzing has improved a lot. That's nice because that was so irritating.

 

It sounds like things might be improving - fewer internal tremors  (one of my most unfavorite symptoms!) and buzzing.  By buzzing - do you mean tinnitus?

 

 

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  • Mentor

Whoa, a window! I feel almost like my old self! I only had 2 hot flashes today and the dystonia wasn't too bad either. Wow!

 

The song below came to mind:  😂😂😂

 

Celebratory song

Now: 100 mg Zoloft am, 50 mg Trazodone.  Daily drug burden decreased from 2050 in 2018 mg to 150 mg 🐢🐢

Zoloft: 1/24/23 increased to 100 mg after suicide attempt 9/17/22 cut 6 mg, 8/14/22 cut 6.5 mg, 5/7/22 cut 12.5 mg 3/20/22 cut 12.5 mg 10/26/21 cut 6 mg 10/17/21 cut 5 mg, 9/17/21 Cut 3 mg,  9/13/21 cut 4 mg, 8/29/21 Cut 2 mg 8/8/21 Cut 3 mg  7/30/21 Zoloft: Converted 25 mg to liquid. Also take 100 mg pill & 25 mg pill=150 mg total
🌞 Feb 28, 2021 0 mg Gapapentin 2021 Gaba each dose 4x/day: Feb 27 7 mg (one dose only), Feb 10, 7 mg, Jan 14 10 mg 2020 Current taper schedule from Aug 30-present: drop 8 mg every 2-3 weeks. Aug 20 31 mg, Aug 18, 33 mg, July 29, 35 mg, July 23 38 mg, July 22 40 mg Jun 24 42 mg, Jun 15 44 mg, Jun 9 48 mg, May 22 50 mg, May 14 54 mg, May 7 56 mg, Apr 16 58 mg, Mar 28 60 mg, Mar 18 62 mg. Feb 26 64 mg. Feb 19, 66 mg. Jan 23, 70 mg. 2019 Dec 19, 72 mg. Nov 14 ,76 mg. Aug 8, 80 mg. Aug 6, 85 mg. Jul 26, 90 mg. Jul 11, 95 mg.

Jul 16 trazodone from 100 to 50 mg.

Jun 17-July 10 Slowly changed gab fr pill to liquid at same dose 100 mg 4x/d.

Apr 24 Stopped klon!!! 🌞 Apr 4  Decreased gaba to 400 mg (100 mg 4x/day)-Apr 4, 2019   0.25 klon March 11  Klonopin .5 mg twice daily, varied dose til Apr 15. Started Klon fast taper 25%, short use

Mar 16, 450 mg gaba 3x/day cut 600 mg--not exact!--updose after learning w/d

Feb 20, 2019 1800 mg gabapentin; MD taper; off 3 days=mvt disorder & autonomic instability. July 2018 temazepam 15 mg 1-2; prn several x/wk til Jan/Feb 2019 when cold turkey, flu illness for months

July 2018 started gabapentin 100 3x/day; titrated up to 1800 mg (600 3x/day)

Buspar, I forget how much, 2 pills a day Jan 2017-July 2018 cold turkey. On Zoloft since maybe 2004? After trying many.

*I speak from my experience. Nothing I say is medical advice. I'm not a doctor.

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  • Mentor
2 minutes ago, ShiningLight said:

Whoa, a window! I feel almost like my old self! I only had 2 hot flashes today and the dystonia wasn't too bad either. Wow!

 

The song below came to mind:  😂😂😂

 

Celebratory song

That is awesome!!! Keep on pushing! You got this! Everyday that passes is one more day closer to being healed! 

I follow The Plant Paradox lifestyle by Dr.Gundry. This lifestyle has given me my life back and I feel better than I have ever felt in my life. It has enabled me to finally get off of this medication and truly live my life. Nutrition is the key to health!!!!! 

2008 to 2019  - 20 mg Paroxetine

Attempted 2 CT's around the 5-6 year mark. Were absolutely terrible and reinstated. Was never explained by the doctor the seriousness of the short half life of this drug. 

2017 - Attempted a tapered discontinuation of this drug and reinstated after being unsuccessful.

2019 - Feb. 12 - After a three month taper I am off of paroxetine. The 3 months were terrible, awful withdrawal feelings. I followed the doctors guidelines for the reduction of this drug and now know it was way too fast. 
2019 - Oct. 12 - 8 months off paroxetine. 75% improvement since coming off the drug. Definitely have had tons of challenges along the way. Let’s go!!!! 

2021 - Feb. 12 - 24 months off paroxetine. I have minor challenges now. Tinnitus/Headaches are still around but are reduced by a massive amount. 

 

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So nice to hear! I hope the windows keep on coming!

2014: Paxil 20 mg - 1 year - protracted withdrawal that lasted years

2019: Venlafaxine XR 37,5 mg - 1 pill - instant adverse reaction

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  • Moderator Emeritus

Hooray! So glad to hear about the window and also your proactive steps on getting the FMLA stuff sorted out. HMOs can be a pain to deal with, in terms of getting the proper specialists and appts. My mom made a point to set up her medicare as PPO so she could pick and choose her doctors. And I tell people, if you have the means, get a concierge doctor! But not everyone has the means, of course.

 

Don’t worry about what your healthcare system thinks or how others perceive you, get the care that you need!

Apr 2018: Began 10 mg Amitriptyline (for headaches & insomnia from concussion).

Jul - Aug 2018: Fast taper to 5 mg and then 2.5 mg (too fast, hellish withdrawal at 2.5 mg). Sept 2018: Reinstated 10 mg (many symptoms improved). Oct 2018 - Apr 2019: Updosed & stabilized on 11 mg (2 waves at 3 and 5 months post-withdrawal). Apr 2019 - Apr 2020: Tapered 0.5-0.25 mg per month using compounded pills: 11 mg —> 6 mg. (2 waves at 12 and 16 months post-withdrawal.) Apr 2020 - present: Switched to a liquid taper at rate of 0.1 mg per month. Currently: 1.1 mg. No more waves. 

 

Supplements: Omega-3 fish oil, Vit B12, coenzyme Q10, Hawthorn extract (for tachycardia) Tools for insomnia/waves (as needed): Epsom salt foot soaks, 0.5 mg Melatonin, quality time, waves WILL PASS. Lifestyle: Eat real foods, mostly plants; sunlight, walking, yoga; symptom tracking on adapted Glenmullen chart.

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Hello Shining,

 

How are you doing today?  How is the paperwork progressing for the FMLA?

 

One thing I haven't heard anyone mention is time and effort we spend  dealing with insurance companies, MDs, hospital billing, referrals, disability, the social security administration, medicare. It can be quite a job.  😎

 

I have been thinking of you and hope you are in your window.

 

 

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  • Mentor

Today is the first day in 8 months I haven't had a hot flash!!!! I am in shock!!!

 

I was getting multiple ones an hour at the beginning. Then down to 6 a day. Then 2-3. And today...none! Unless I missed one? But even then it must not have been a bad one.

 

Had other stuff but not that. That has been an extremely persistent symptom.

Now: 100 mg Zoloft am, 50 mg Trazodone.  Daily drug burden decreased from 2050 in 2018 mg to 150 mg 🐢🐢

Zoloft: 1/24/23 increased to 100 mg after suicide attempt 9/17/22 cut 6 mg, 8/14/22 cut 6.5 mg, 5/7/22 cut 12.5 mg 3/20/22 cut 12.5 mg 10/26/21 cut 6 mg 10/17/21 cut 5 mg, 9/17/21 Cut 3 mg,  9/13/21 cut 4 mg, 8/29/21 Cut 2 mg 8/8/21 Cut 3 mg  7/30/21 Zoloft: Converted 25 mg to liquid. Also take 100 mg pill & 25 mg pill=150 mg total
🌞 Feb 28, 2021 0 mg Gapapentin 2021 Gaba each dose 4x/day: Feb 27 7 mg (one dose only), Feb 10, 7 mg, Jan 14 10 mg 2020 Current taper schedule from Aug 30-present: drop 8 mg every 2-3 weeks. Aug 20 31 mg, Aug 18, 33 mg, July 29, 35 mg, July 23 38 mg, July 22 40 mg Jun 24 42 mg, Jun 15 44 mg, Jun 9 48 mg, May 22 50 mg, May 14 54 mg, May 7 56 mg, Apr 16 58 mg, Mar 28 60 mg, Mar 18 62 mg. Feb 26 64 mg. Feb 19, 66 mg. Jan 23, 70 mg. 2019 Dec 19, 72 mg. Nov 14 ,76 mg. Aug 8, 80 mg. Aug 6, 85 mg. Jul 26, 90 mg. Jul 11, 95 mg.

Jul 16 trazodone from 100 to 50 mg.

Jun 17-July 10 Slowly changed gab fr pill to liquid at same dose 100 mg 4x/d.

Apr 24 Stopped klon!!! 🌞 Apr 4  Decreased gaba to 400 mg (100 mg 4x/day)-Apr 4, 2019   0.25 klon March 11  Klonopin .5 mg twice daily, varied dose til Apr 15. Started Klon fast taper 25%, short use

Mar 16, 450 mg gaba 3x/day cut 600 mg--not exact!--updose after learning w/d

Feb 20, 2019 1800 mg gabapentin; MD taper; off 3 days=mvt disorder & autonomic instability. July 2018 temazepam 15 mg 1-2; prn several x/wk til Jan/Feb 2019 when cold turkey, flu illness for months

July 2018 started gabapentin 100 3x/day; titrated up to 1800 mg (600 3x/day)

Buspar, I forget how much, 2 pills a day Jan 2017-July 2018 cold turkey. On Zoloft since maybe 2004? After trying many.

*I speak from my experience. Nothing I say is medical advice. I'm not a doctor.

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  • Moderator Emeritus

That is fantastic news!! Things are healing and repairing! What an encouraging sign. We all have our own unique profile of symptoms. One by one, 90% of mine have healed, and might only appear during a wave, but are fully absent in my WDnormal. I hope you see even more symptoms easing up. I think you’re on a good path, keep it up!

Apr 2018: Began 10 mg Amitriptyline (for headaches & insomnia from concussion).

Jul - Aug 2018: Fast taper to 5 mg and then 2.5 mg (too fast, hellish withdrawal at 2.5 mg). Sept 2018: Reinstated 10 mg (many symptoms improved). Oct 2018 - Apr 2019: Updosed & stabilized on 11 mg (2 waves at 3 and 5 months post-withdrawal). Apr 2019 - Apr 2020: Tapered 0.5-0.25 mg per month using compounded pills: 11 mg —> 6 mg. (2 waves at 12 and 16 months post-withdrawal.) Apr 2020 - present: Switched to a liquid taper at rate of 0.1 mg per month. Currently: 1.1 mg. No more waves. 

 

Supplements: Omega-3 fish oil, Vit B12, coenzyme Q10, Hawthorn extract (for tachycardia) Tools for insomnia/waves (as needed): Epsom salt foot soaks, 0.5 mg Melatonin, quality time, waves WILL PASS. Lifestyle: Eat real foods, mostly plants; sunlight, walking, yoga; symptom tracking on adapted Glenmullen chart.

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  • Mentor

Thanks @composter ! It's very encouraging to see improvement during a hold!

 

So glad you're doing well.

Now: 100 mg Zoloft am, 50 mg Trazodone.  Daily drug burden decreased from 2050 in 2018 mg to 150 mg 🐢🐢

Zoloft: 1/24/23 increased to 100 mg after suicide attempt 9/17/22 cut 6 mg, 8/14/22 cut 6.5 mg, 5/7/22 cut 12.5 mg 3/20/22 cut 12.5 mg 10/26/21 cut 6 mg 10/17/21 cut 5 mg, 9/17/21 Cut 3 mg,  9/13/21 cut 4 mg, 8/29/21 Cut 2 mg 8/8/21 Cut 3 mg  7/30/21 Zoloft: Converted 25 mg to liquid. Also take 100 mg pill & 25 mg pill=150 mg total
🌞 Feb 28, 2021 0 mg Gapapentin 2021 Gaba each dose 4x/day: Feb 27 7 mg (one dose only), Feb 10, 7 mg, Jan 14 10 mg 2020 Current taper schedule from Aug 30-present: drop 8 mg every 2-3 weeks. Aug 20 31 mg, Aug 18, 33 mg, July 29, 35 mg, July 23 38 mg, July 22 40 mg Jun 24 42 mg, Jun 15 44 mg, Jun 9 48 mg, May 22 50 mg, May 14 54 mg, May 7 56 mg, Apr 16 58 mg, Mar 28 60 mg, Mar 18 62 mg. Feb 26 64 mg. Feb 19, 66 mg. Jan 23, 70 mg. 2019 Dec 19, 72 mg. Nov 14 ,76 mg. Aug 8, 80 mg. Aug 6, 85 mg. Jul 26, 90 mg. Jul 11, 95 mg.

Jul 16 trazodone from 100 to 50 mg.

Jun 17-July 10 Slowly changed gab fr pill to liquid at same dose 100 mg 4x/d.

Apr 24 Stopped klon!!! 🌞 Apr 4  Decreased gaba to 400 mg (100 mg 4x/day)-Apr 4, 2019   0.25 klon March 11  Klonopin .5 mg twice daily, varied dose til Apr 15. Started Klon fast taper 25%, short use

Mar 16, 450 mg gaba 3x/day cut 600 mg--not exact!--updose after learning w/d

Feb 20, 2019 1800 mg gabapentin; MD taper; off 3 days=mvt disorder & autonomic instability. July 2018 temazepam 15 mg 1-2; prn several x/wk til Jan/Feb 2019 when cold turkey, flu illness for months

July 2018 started gabapentin 100 3x/day; titrated up to 1800 mg (600 3x/day)

Buspar, I forget how much, 2 pills a day Jan 2017-July 2018 cold turkey. On Zoloft since maybe 2004? After trying many.

*I speak from my experience. Nothing I say is medical advice. I'm not a doctor.

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14 hours ago, ShiningLight said:

That has been an extremely persistent symptom.

 

Congrats! I hope you will have more days like this. How was your dystonia?

 

Were these hot flushes on your face as well?

 

I started having these 3 years post menopause! Unbelievable hot flushes on my face. Also on my torso. I didn't think they were associated with the head?

 

 

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  • Mentor

For me they are absolutely wd related. Autonomic nervous system dysregulation. None today so far either!!! 

 

Toe dystonia is imprpving with PT. Hamstrings, legs, and bouts of fatigue are still very bad.

Now: 100 mg Zoloft am, 50 mg Trazodone.  Daily drug burden decreased from 2050 in 2018 mg to 150 mg 🐢🐢

Zoloft: 1/24/23 increased to 100 mg after suicide attempt 9/17/22 cut 6 mg, 8/14/22 cut 6.5 mg, 5/7/22 cut 12.5 mg 3/20/22 cut 12.5 mg 10/26/21 cut 6 mg 10/17/21 cut 5 mg, 9/17/21 Cut 3 mg,  9/13/21 cut 4 mg, 8/29/21 Cut 2 mg 8/8/21 Cut 3 mg  7/30/21 Zoloft: Converted 25 mg to liquid. Also take 100 mg pill & 25 mg pill=150 mg total
🌞 Feb 28, 2021 0 mg Gapapentin 2021 Gaba each dose 4x/day: Feb 27 7 mg (one dose only), Feb 10, 7 mg, Jan 14 10 mg 2020 Current taper schedule from Aug 30-present: drop 8 mg every 2-3 weeks. Aug 20 31 mg, Aug 18, 33 mg, July 29, 35 mg, July 23 38 mg, July 22 40 mg Jun 24 42 mg, Jun 15 44 mg, Jun 9 48 mg, May 22 50 mg, May 14 54 mg, May 7 56 mg, Apr 16 58 mg, Mar 28 60 mg, Mar 18 62 mg. Feb 26 64 mg. Feb 19, 66 mg. Jan 23, 70 mg. 2019 Dec 19, 72 mg. Nov 14 ,76 mg. Aug 8, 80 mg. Aug 6, 85 mg. Jul 26, 90 mg. Jul 11, 95 mg.

Jul 16 trazodone from 100 to 50 mg.

Jun 17-July 10 Slowly changed gab fr pill to liquid at same dose 100 mg 4x/d.

Apr 24 Stopped klon!!! 🌞 Apr 4  Decreased gaba to 400 mg (100 mg 4x/day)-Apr 4, 2019   0.25 klon March 11  Klonopin .5 mg twice daily, varied dose til Apr 15. Started Klon fast taper 25%, short use

Mar 16, 450 mg gaba 3x/day cut 600 mg--not exact!--updose after learning w/d

Feb 20, 2019 1800 mg gabapentin; MD taper; off 3 days=mvt disorder & autonomic instability. July 2018 temazepam 15 mg 1-2; prn several x/wk til Jan/Feb 2019 when cold turkey, flu illness for months

July 2018 started gabapentin 100 3x/day; titrated up to 1800 mg (600 3x/day)

Buspar, I forget how much, 2 pills a day Jan 2017-July 2018 cold turkey. On Zoloft since maybe 2004? After trying many.

*I speak from my experience. Nothing I say is medical advice. I'm not a doctor.

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46 minutes ago, ShiningLight said:

For me they are absolutely wd related

 

Did they affect your face? I don't believe this is hot flash per se. Did you also have an intolerance to air temperature outside a narrow range?

 

48 minutes ago, ShiningLight said:

Toe dystonia is imprpving with PT. Hamstrings, legs, and bouts of fatigue are still very bad.

 

I am so glad for you. A sun rise on the horizon. ;) The fatigue comes out of nowhere - but one of these things I push through.

 

How did things at work go?

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  • Mentor
16 minutes ago, Guilietta said:

I am so glad for you. A sun rise on the horizon. ;) The fatigue comes out of nowhere - but one of these things I push through.

 

This is by far the hardest for me. I can have a massive fatigue crash and in a few hours go crush sports and working out like nothing happened. They do get better. Mine are like weekly now, they used to be daily and were all day. 

I follow The Plant Paradox lifestyle by Dr.Gundry. This lifestyle has given me my life back and I feel better than I have ever felt in my life. It has enabled me to finally get off of this medication and truly live my life. Nutrition is the key to health!!!!! 

2008 to 2019  - 20 mg Paroxetine

Attempted 2 CT's around the 5-6 year mark. Were absolutely terrible and reinstated. Was never explained by the doctor the seriousness of the short half life of this drug. 

2017 - Attempted a tapered discontinuation of this drug and reinstated after being unsuccessful.

2019 - Feb. 12 - After a three month taper I am off of paroxetine. The 3 months were terrible, awful withdrawal feelings. I followed the doctors guidelines for the reduction of this drug and now know it was way too fast. 
2019 - Oct. 12 - 8 months off paroxetine. 75% improvement since coming off the drug. Definitely have had tons of challenges along the way. Let’s go!!!! 

2021 - Feb. 12 - 24 months off paroxetine. I have minor challenges now. Tinnitus/Headaches are still around but are reduced by a massive amount. 

 

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Congrats on getting rid of that symptom, that's awesome!

2014: Paxil 20 mg - 1 year - protracted withdrawal that lasted years

2019: Venlafaxine XR 37,5 mg - 1 pill - instant adverse reaction

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  • Mentor
On 10/27/2019 at 3:03 PM, Cocopuffz17 said:

I can have a massive fatigue crash and in a few hours go crush sports and working out like nothing happened. They do get better.

 

So sorry to hear this, but glad it's getting better! Thanks for giving me hope.

 

Thanks @Len189 had a few minor ones to day but still quite happy with the status! Hope you are well.

 

 

Now: 100 mg Zoloft am, 50 mg Trazodone.  Daily drug burden decreased from 2050 in 2018 mg to 150 mg 🐢🐢

Zoloft: 1/24/23 increased to 100 mg after suicide attempt 9/17/22 cut 6 mg, 8/14/22 cut 6.5 mg, 5/7/22 cut 12.5 mg 3/20/22 cut 12.5 mg 10/26/21 cut 6 mg 10/17/21 cut 5 mg, 9/17/21 Cut 3 mg,  9/13/21 cut 4 mg, 8/29/21 Cut 2 mg 8/8/21 Cut 3 mg  7/30/21 Zoloft: Converted 25 mg to liquid. Also take 100 mg pill & 25 mg pill=150 mg total
🌞 Feb 28, 2021 0 mg Gapapentin 2021 Gaba each dose 4x/day: Feb 27 7 mg (one dose only), Feb 10, 7 mg, Jan 14 10 mg 2020 Current taper schedule from Aug 30-present: drop 8 mg every 2-3 weeks. Aug 20 31 mg, Aug 18, 33 mg, July 29, 35 mg, July 23 38 mg, July 22 40 mg Jun 24 42 mg, Jun 15 44 mg, Jun 9 48 mg, May 22 50 mg, May 14 54 mg, May 7 56 mg, Apr 16 58 mg, Mar 28 60 mg, Mar 18 62 mg. Feb 26 64 mg. Feb 19, 66 mg. Jan 23, 70 mg. 2019 Dec 19, 72 mg. Nov 14 ,76 mg. Aug 8, 80 mg. Aug 6, 85 mg. Jul 26, 90 mg. Jul 11, 95 mg.

Jul 16 trazodone from 100 to 50 mg.

Jun 17-July 10 Slowly changed gab fr pill to liquid at same dose 100 mg 4x/d.

Apr 24 Stopped klon!!! 🌞 Apr 4  Decreased gaba to 400 mg (100 mg 4x/day)-Apr 4, 2019   0.25 klon March 11  Klonopin .5 mg twice daily, varied dose til Apr 15. Started Klon fast taper 25%, short use

Mar 16, 450 mg gaba 3x/day cut 600 mg--not exact!--updose after learning w/d

Feb 20, 2019 1800 mg gabapentin; MD taper; off 3 days=mvt disorder & autonomic instability. July 2018 temazepam 15 mg 1-2; prn several x/wk til Jan/Feb 2019 when cold turkey, flu illness for months

July 2018 started gabapentin 100 3x/day; titrated up to 1800 mg (600 3x/day)

Buspar, I forget how much, 2 pills a day Jan 2017-July 2018 cold turkey. On Zoloft since maybe 2004? After trying many.

*I speak from my experience. Nothing I say is medical advice. I'm not a doctor.

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  • 2 weeks later...
  • Mentor

I'm here. So incredibly tired of it all.

Now: 100 mg Zoloft am, 50 mg Trazodone.  Daily drug burden decreased from 2050 in 2018 mg to 150 mg 🐢🐢

Zoloft: 1/24/23 increased to 100 mg after suicide attempt 9/17/22 cut 6 mg, 8/14/22 cut 6.5 mg, 5/7/22 cut 12.5 mg 3/20/22 cut 12.5 mg 10/26/21 cut 6 mg 10/17/21 cut 5 mg, 9/17/21 Cut 3 mg,  9/13/21 cut 4 mg, 8/29/21 Cut 2 mg 8/8/21 Cut 3 mg  7/30/21 Zoloft: Converted 25 mg to liquid. Also take 100 mg pill & 25 mg pill=150 mg total
🌞 Feb 28, 2021 0 mg Gapapentin 2021 Gaba each dose 4x/day: Feb 27 7 mg (one dose only), Feb 10, 7 mg, Jan 14 10 mg 2020 Current taper schedule from Aug 30-present: drop 8 mg every 2-3 weeks. Aug 20 31 mg, Aug 18, 33 mg, July 29, 35 mg, July 23 38 mg, July 22 40 mg Jun 24 42 mg, Jun 15 44 mg, Jun 9 48 mg, May 22 50 mg, May 14 54 mg, May 7 56 mg, Apr 16 58 mg, Mar 28 60 mg, Mar 18 62 mg. Feb 26 64 mg. Feb 19, 66 mg. Jan 23, 70 mg. 2019 Dec 19, 72 mg. Nov 14 ,76 mg. Aug 8, 80 mg. Aug 6, 85 mg. Jul 26, 90 mg. Jul 11, 95 mg.

Jul 16 trazodone from 100 to 50 mg.

Jun 17-July 10 Slowly changed gab fr pill to liquid at same dose 100 mg 4x/d.

Apr 24 Stopped klon!!! 🌞 Apr 4  Decreased gaba to 400 mg (100 mg 4x/day)-Apr 4, 2019   0.25 klon March 11  Klonopin .5 mg twice daily, varied dose til Apr 15. Started Klon fast taper 25%, short use

Mar 16, 450 mg gaba 3x/day cut 600 mg--not exact!--updose after learning w/d

Feb 20, 2019 1800 mg gabapentin; MD taper; off 3 days=mvt disorder & autonomic instability. July 2018 temazepam 15 mg 1-2; prn several x/wk til Jan/Feb 2019 when cold turkey, flu illness for months

July 2018 started gabapentin 100 3x/day; titrated up to 1800 mg (600 3x/day)

Buspar, I forget how much, 2 pills a day Jan 2017-July 2018 cold turkey. On Zoloft since maybe 2004? After trying many.

*I speak from my experience. Nothing I say is medical advice. I'm not a doctor.

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Likewise.

 

A number of us have been asking (each other) how do we know what stage of recovery we are in. I don't think we came up with an answer. ;) 

 

How is work going? Is dystonia improving I hope?

 

In a nutshell the past 2 weeks have been mostly crummy. The worst symptoms have been emotional distress - despair, hopeless, helpless. None of my little goals took off.  I spent a lot of time on SA.

 

That being said - I need to reassess priorities and get ready for my appointment with my neurologist - and relax this evening. Medical insurance will no longer cover lamotrigine ER so I have to convert back to immediate release - tomorrow's exciting topic. ;)

 

 

 

 

 

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  • Moderator Emeritus

Hi Shining, just checking in to say hello, thinking of you. How's it going?

Started on Prozac and Xanax in 1992 for PTSD after an assault. One drug led to more, the usual story. Got sicker and sicker, but believed I needed the drugs for my "underlying disease". Long story...lost everything. Life savings, home, physical and mental health, relationships, friendships, ability to work, everything. Amitryptiline, Prozac, bupropion, buspirone, flurazepam, diazepam, alprazolam, Paxil, citalopram, lamotrigine, gabapentin...probably more I've forgotten. 

Started multidrug taper in Feb 2010.  Doing a very slow microtaper, down to low doses now and feeling SO much better, getting my old personality and my brain back! Able to work full time, have a full social life, and cope with stress better than ever. Not perfect, but much better. After 23 lost years. Big Pharma has a lot to answer for. And "medicine for profit" is just not a great idea.

 

Feb 15 2010:  300 mg Neurontin  200 Lamictal   10 Celexa      0.65 Xanax   and 5 mg Ambien 

Feb 10 2014:   62 Lamictal    1.1 Celexa         0.135 Xanax    1.8 Valium

Feb 10 2015:   50 Lamictal      0.875 Celexa    0.11 Xanax      1.5 Valium

Feb 15 2016:   47.5 Lamictal   0.75 Celexa      0.0875 Xanax    1.42 Valium    

2/12/20             12                       0.045               0.007                   1 

May 2021            7                       0.01                  0.0037                1

Feb 2022            6                      0!!!                     0.00167               0.98                2.5 mg Ambien

Oct 2022       4.5 mg Lamictal    (off Celexa, off Xanax)   0.95 Valium    Ambien, 1/4 to 1/2 of a 5 mg tablet 

 

I'm not a doctor. Any advice I give is just my civilian opinion.

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  • Mentor

Thanks so much for thinking of me, @Rhiannon . I am so profoundly exhausted. I struggle to find the words to communicate how washed out I feel. A lot of it is because of my legs. They are in constant contraction, like I just walked up 5 flights of stairs. Almost. All. The. Time.

 

I'm doing PT and stretching but it's not helping much. When I stretch, they just snap back when I'm done. It's causing a lot of fatigue because other muscles compensate. I want to walk my dogs in the morning, but I can barely get out of bed because I'm so tired every day. It's horrendous. I miss exercise as a way of coping, I am coming to fear it. I'm supposed to do the PT twice a day, but I can only bring myself to do it once a day because it causes the spasms too. And I'm not getting enough sleep. If I go to bed early, I can't fall asleep so it doesn't help.

 

Today I walked the dogs about a mile when I came home from work. My legs were finally feeling ok before I went. Ten minutes after coming home, they were all locked up again. It's worse in the morning then generally improves slowly as the day goes on, unless something sets them off again, usually exercise or chores. I use a lot of heat, which does help in the moment while the heat is on.

 

My last cut was 3 months ago. I'm planning to cut 5% 1 or 2 days before thanksgiving. The internal tremors/buzzing is a lot better. Everything is a lot better except for the fatigue and muscle spasms.

 

There's no identifiable trigger for the legs. It's just totally unpredictable. Lately it's been pretty bad. I have an appt with my movement disorder neuro in December, but I don't know what he is going suggest other than medication, which is a real problem for obvious reasons, but I might be willing to try something because I'm not sure how much more of this I can take.

 

I think I just feel really stuck and trapped. I'm doing the best I can, but it's not getting better.

 

Thanks again.

Now: 100 mg Zoloft am, 50 mg Trazodone.  Daily drug burden decreased from 2050 in 2018 mg to 150 mg 🐢🐢

Zoloft: 1/24/23 increased to 100 mg after suicide attempt 9/17/22 cut 6 mg, 8/14/22 cut 6.5 mg, 5/7/22 cut 12.5 mg 3/20/22 cut 12.5 mg 10/26/21 cut 6 mg 10/17/21 cut 5 mg, 9/17/21 Cut 3 mg,  9/13/21 cut 4 mg, 8/29/21 Cut 2 mg 8/8/21 Cut 3 mg  7/30/21 Zoloft: Converted 25 mg to liquid. Also take 100 mg pill & 25 mg pill=150 mg total
🌞 Feb 28, 2021 0 mg Gapapentin 2021 Gaba each dose 4x/day: Feb 27 7 mg (one dose only), Feb 10, 7 mg, Jan 14 10 mg 2020 Current taper schedule from Aug 30-present: drop 8 mg every 2-3 weeks. Aug 20 31 mg, Aug 18, 33 mg, July 29, 35 mg, July 23 38 mg, July 22 40 mg Jun 24 42 mg, Jun 15 44 mg, Jun 9 48 mg, May 22 50 mg, May 14 54 mg, May 7 56 mg, Apr 16 58 mg, Mar 28 60 mg, Mar 18 62 mg. Feb 26 64 mg. Feb 19, 66 mg. Jan 23, 70 mg. 2019 Dec 19, 72 mg. Nov 14 ,76 mg. Aug 8, 80 mg. Aug 6, 85 mg. Jul 26, 90 mg. Jul 11, 95 mg.

Jul 16 trazodone from 100 to 50 mg.

Jun 17-July 10 Slowly changed gab fr pill to liquid at same dose 100 mg 4x/d.

Apr 24 Stopped klon!!! 🌞 Apr 4  Decreased gaba to 400 mg (100 mg 4x/day)-Apr 4, 2019   0.25 klon March 11  Klonopin .5 mg twice daily, varied dose til Apr 15. Started Klon fast taper 25%, short use

Mar 16, 450 mg gaba 3x/day cut 600 mg--not exact!--updose after learning w/d

Feb 20, 2019 1800 mg gabapentin; MD taper; off 3 days=mvt disorder & autonomic instability. July 2018 temazepam 15 mg 1-2; prn several x/wk til Jan/Feb 2019 when cold turkey, flu illness for months

July 2018 started gabapentin 100 3x/day; titrated up to 1800 mg (600 3x/day)

Buspar, I forget how much, 2 pills a day Jan 2017-July 2018 cold turkey. On Zoloft since maybe 2004? After trying many.

*I speak from my experience. Nothing I say is medical advice. I'm not a doctor.

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  • Moderator Emeritus
10 hours ago, ShiningLight said:

lot of it is because of my legs. They are in constant contractio

 

ShiningLight,

 

I'm sorry you're feeling so bad.  The information in this link about muscle contraction may be helpful.

Occasional neuromuscular symptoms: Tics, twitches ...

Gridley Introduction

 

Lexapro 20 mg since 2004.  Begin Brassmonkey Slide Taper Jan. 2017.   

End 2017 year 1 of taper at 9.25mg 

End 2018 year 2 of taper at 4.1mg

End 2019 year 3 of taper at 1.0mg  

Oct. 30, 2020  Jump to zero from 0.025mg.  Current dose: 0.000mg

3 year, 10 month taper is 100% complete.

 

Ativan 1 mg to 1.875mg 1986-2020, two CT's and reinstatements

Nov. 2020, 7-week Ativan-Valium crossover to 18.75mg Valium

Feb. 2021, begin 10%/4 week taper of 18.75mg Valium 

End 2021  year 1 of Valium taper at 6mg

End 2022 year 2 of Valium taper at 2.75mg 

End 2023 year 3 of Valium taper at 1mg

Jan. 24, 2024: Hold at 1mg and shift to Imipramine taper.

Taper is 95% complete.

 

Imipramine 75 mg daily since 1986.  Jan.-Sept. 2016 tapered to 14.4mg  

March 22, 2022: Begin 10%/4 week taper

Aug. 5, 2022: hold at 9.5mg and shift to Valium taper

Jan. 24, 2024: Resume Imipramine taper.  Current dose as of Feb. 22: 7.6mg

Taper is 90% complete.  

  

Supplements: multiple, quercetin, omega-3, vitamins C, E and D3, magnesium glycinate, probiotics, zinc, melatonin .3mg, anti-candida, iron, serrapeptase, nattokinase


I am not a medical professional and this is not medical advice but simply information based on my own experience, as well as other members who have survived these drugs.

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  • Mentor

Yes it was thanks @Gridley!

Now: 100 mg Zoloft am, 50 mg Trazodone.  Daily drug burden decreased from 2050 in 2018 mg to 150 mg 🐢🐢

Zoloft: 1/24/23 increased to 100 mg after suicide attempt 9/17/22 cut 6 mg, 8/14/22 cut 6.5 mg, 5/7/22 cut 12.5 mg 3/20/22 cut 12.5 mg 10/26/21 cut 6 mg 10/17/21 cut 5 mg, 9/17/21 Cut 3 mg,  9/13/21 cut 4 mg, 8/29/21 Cut 2 mg 8/8/21 Cut 3 mg  7/30/21 Zoloft: Converted 25 mg to liquid. Also take 100 mg pill & 25 mg pill=150 mg total
🌞 Feb 28, 2021 0 mg Gapapentin 2021 Gaba each dose 4x/day: Feb 27 7 mg (one dose only), Feb 10, 7 mg, Jan 14 10 mg 2020 Current taper schedule from Aug 30-present: drop 8 mg every 2-3 weeks. Aug 20 31 mg, Aug 18, 33 mg, July 29, 35 mg, July 23 38 mg, July 22 40 mg Jun 24 42 mg, Jun 15 44 mg, Jun 9 48 mg, May 22 50 mg, May 14 54 mg, May 7 56 mg, Apr 16 58 mg, Mar 28 60 mg, Mar 18 62 mg. Feb 26 64 mg. Feb 19, 66 mg. Jan 23, 70 mg. 2019 Dec 19, 72 mg. Nov 14 ,76 mg. Aug 8, 80 mg. Aug 6, 85 mg. Jul 26, 90 mg. Jul 11, 95 mg.

Jul 16 trazodone from 100 to 50 mg.

Jun 17-July 10 Slowly changed gab fr pill to liquid at same dose 100 mg 4x/d.

Apr 24 Stopped klon!!! 🌞 Apr 4  Decreased gaba to 400 mg (100 mg 4x/day)-Apr 4, 2019   0.25 klon March 11  Klonopin .5 mg twice daily, varied dose til Apr 15. Started Klon fast taper 25%, short use

Mar 16, 450 mg gaba 3x/day cut 600 mg--not exact!--updose after learning w/d

Feb 20, 2019 1800 mg gabapentin; MD taper; off 3 days=mvt disorder & autonomic instability. July 2018 temazepam 15 mg 1-2; prn several x/wk til Jan/Feb 2019 when cold turkey, flu illness for months

July 2018 started gabapentin 100 3x/day; titrated up to 1800 mg (600 3x/day)

Buspar, I forget how much, 2 pills a day Jan 2017-July 2018 cold turkey. On Zoloft since maybe 2004? After trying many.

*I speak from my experience. Nothing I say is medical advice. I'm not a doctor.

Link to comment

Hello @ShiningLight

 

I read your post and I'm really sorry about the ongoing muscular contraction and spasms in your legs, fatigue and the other elements associated with this.  I know how it is to feel stuck and trapped. I wish I could offer you some practical advice but I don't know what to offer. I can offer only my wishes that you get some relief.

 

@Gridley thank you for sending the link. It's very interesting. I wonder if calcium and accupuncture might help you, @ShiningLight

 

Thinking of you and hoping that tomorrow or the day after your legs improve. :)

Giuilietta

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