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Janie: is there any treatment for protracted withdrawal


Janie

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If you know you're going to take meds, you might want to have testing by genomind.com. As Alto says, it's kind of a fad right now. I ran into it with my new dr. It is genetic testing to point out gene variants that might make some adverse events more likely, some illnesses more likely, and unusual processing by some liver enzymes. Since I am hoping to go off meds, I was happy that my dr. said my profile basically showed I wasn't going to do well on meds.

1st round Prozac 1989/90, clear depression symptoms. 2nd round Prozac started 1999 when admitted to dr. I was tired. Prozac pooped out, switch to Cymbalta 3/2006. Diagnosed with bipolar disorder due to mania 6/2006--then I was taken abruptly off Cymbalta and didn't know I had SSRI withdrawal. Lots of meds for my intractable "bipolar" symptoms.

Zyprexa started about 9/06, mostly 5mg. Tapered 4/12 through12/29/12

Wellbutrin. XL 300 mg started 1/07, tapered 1/18/13 through 7/8/13

Oxazepam mostly continuously since 6/06, 30mg since 12/12, tapered 1.17.14 through 8.26.15

11/06 Lithium 600mg twice daily, 2.2.14 400mg TID DIY liquid, 2.12.14 1150mg, 3.2.14 1100mg, 3.18.14 1075mg, 4/14 updose to 1100mg, 6.1.14 900 mg capsules 7.8.14 810mg, 8.17.14 725mg, 8.24.24 700mg...10.22.14 487.5mg, 3.9.15 475mg, 4.1.15 462.5mg 4.21.15 450mg 8.11.15 375mg, 11.28.15 362.5mg, back to 375mg four days later, 3.4.16 updose to 475 (too much going on to risk trouble)

9/4/13 Toprol-XL 25mg daily for sudden hypertension, tapered 11.12.13 through 5.3.14, last 10 days or so switched to atenolol

7.4.14 Started Walsh Protocol

56 years old

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Wow that is amazing MQ......is this something that you had to pay out of pocket for rather than have your insurance company pay for it?

 

Had no idea this existed.

 

Back to Janie.....good luck and best wishes in whatever you decide to do. 

Intro: http://survivingantidepressants.org/index.php?/topic/1902-nikki-hi-my-rundown-with-ads/

 

Paxil 1997-2004

Crossed over to Lexapro Paxil not available

at Pharmacies GSK halted deliveries

Lexapro 40mgs

Lexapro taper (2years)

Imipramine

Imipramine and Celexa

Now Nefazadone/Imipramine 50mgs. each

45mgs. Serzone  50mgs. Imipramine

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Well, I can think of many negative possible outcomes to labeling with mental health genes. But it might save some trial and error in med shopping. I didn't pay for it...the doc has some relationship with the company that she tests all her patients, she writes insurance appeal letters if insurance denies payment, and the company accepts whatever they get from insurance as payment in full.

1st round Prozac 1989/90, clear depression symptoms. 2nd round Prozac started 1999 when admitted to dr. I was tired. Prozac pooped out, switch to Cymbalta 3/2006. Diagnosed with bipolar disorder due to mania 6/2006--then I was taken abruptly off Cymbalta and didn't know I had SSRI withdrawal. Lots of meds for my intractable "bipolar" symptoms.

Zyprexa started about 9/06, mostly 5mg. Tapered 4/12 through12/29/12

Wellbutrin. XL 300 mg started 1/07, tapered 1/18/13 through 7/8/13

Oxazepam mostly continuously since 6/06, 30mg since 12/12, tapered 1.17.14 through 8.26.15

11/06 Lithium 600mg twice daily, 2.2.14 400mg TID DIY liquid, 2.12.14 1150mg, 3.2.14 1100mg, 3.18.14 1075mg, 4/14 updose to 1100mg, 6.1.14 900 mg capsules 7.8.14 810mg, 8.17.14 725mg, 8.24.24 700mg...10.22.14 487.5mg, 3.9.15 475mg, 4.1.15 462.5mg 4.21.15 450mg 8.11.15 375mg, 11.28.15 362.5mg, back to 375mg four days later, 3.4.16 updose to 475 (too much going on to risk trouble)

9/4/13 Toprol-XL 25mg daily for sudden hypertension, tapered 11.12.13 through 5.3.14, last 10 days or so switched to atenolol

7.4.14 Started Walsh Protocol

56 years old

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From what I've seen it's pretty much impossible to predict for any one person what any one drug will do to them, particularly if they've already been on psych drugs in the past and are struggling with withdrawal type symptoms. Outcomes seem to be all over the place.

 

I certainly understand the need to do whatever it takes to survive and cope, and many people have found some help from adding in meds; others have gotten worse.  

 

This forum doesn't really advise people on what meds to take. That's not really our area of expertise.  I think it's great though for people to share their own experiences. Just realize that we're not experts on this, we're not medical professionals, and you're the one who is going to either enjoy or suffer the consequences, so make the decision as carefully as you can.

 

I would suggest that if you do add something in, start with a very small dose, well below the usual typical recommended starting dose. You can always scoonch it up a bit if you find it helps you, but if you have a bad reaction and you're taking too much, you're kind of SOL.

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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Also muscle testing can help, if you have a practitioner you trust.

 

I don't think muscle testing is likely to ever support a psych med, because the meds are all so toxic relative to their need. But the testing can be very helpful to avert disaster which is very important. I mean, if you try to test something that you are not taking and do not need to start, something that will injure you badly, you will test very weakly to it. In which case don't take it, continue to muscle test other drugs (if you insist on trying another) until you find one you that you field doesn't crumble to. Again, none will test strong but there are more and less disastrous options so avert the more.

 

If you don't believe in muscle testing, then you will not be able to use this method which I have found very helpful and possibly averted a few disasters myself.

 

EDIT: I bring this up because I recently got a script for .5 risperidone which I immediately muscle tested in the hopes it'd be useful for a couple months to chill out intestinal pathogens to allow my body to heal. The muscle testing was unbelievably weak and unequivocal. I really wanted to try it too but I have only tested THAT badly to the colon cleanse that blew up my innerds (a massive disaster I've written about in my own thread) so I consider a disaster averted that I didn't fall into my own wishful thinking and take the risperdal.

"Well my ship's been split to splinters and it's sinking fast
I'm drowning in the poison, got no future, got no past
But my heart is not weary, it's light and it's free
I've got nothing but affection for all those who sailed with me.

Everybody's moving, if they ain't already there
Everybody's got to move somewhere
Stick with me baby, stick with me anyhow
Things should start to get interesting right about now."

- Zimmerman

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All of your comments have been wonderfully incredibly interesting and helpful!!!!!  Thank you all so much.  It is now the weekend so I had time to read all these posts, but I have someplace to be today and will write many comments and questions soon.  I love you all.  Thanks for being there and sharing your thoughts and stories.

2002? zoloft.  Start of synthroid unknown.

2002? switched to paxil  - Developed restless leg syndrome. stopped all caffeine which helped for many years.

2003? switched to effexor XL 75 mg. May 2012 began taper

July 2012 stopped all effexor . Usual WD symptoms, lost excess weight, had more energy. RLS stopped immediately!

Sept 2012 depression off and on, increasing. Tried tryptophan and acupuncture

Dec 2012 severe anxiety began

February 2013 used magnolia bark for anxiety - helped but developed central sleep apnea, so I stopped it

by April 2013- stopped tryptophan, using saffron herb successfully and started HRT

June 2013 doctor noticed bradycardia. I tried very small dose cytomel sev days for hypothyroidism but seemed to strain my heart.

July 2013 stopped saffron due to slow heart and palpitations - did not help.

July 2013 Increased synthroid from 50mg to 75mg. depression and anxiety improved. Heart problems continue.

September & October 2013 - 2 month course of antibiotic for possbile lyme disease - mood and anxiety improved further.  Heart pvc's flair up at times. 

 

 

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Dear fellow sufferers, I 've been in a window for the last few days. Big sigh of relief!  I have some hope again that I can try more things but time is short.  Thank you all for posting.

 

MQ - yes I went ahead and made appointment with a lyme doctor.  I don't know how good he will be. I suspect he will assume all these symptoms are lyme if he's never heard of AD withdrawal syndrome. But I will hope for some more clues and hepful information. I might try a treatment but do worry about any herbal treatment going across the blood brain barrier and making things worse! You said a lyme doctor worked with diet and supplements to build up your brother in law's resilience BEFORE starting treatment.  What was the treatment?

 

For the methylation issue. I can't seem to get an understanding of all that. Some places it says taking the remedy it will not necessarily help. It seems worth a try. I would want to be tested before messing with the supplements.  It all seemed so complicated to know where to order the test. I'd rather not go through my insurance due to being labeled. I'd rather not be on 23and me's data base where they share the data.  But if one uses another company one would not get the results analysis, only the result? If anyone knows another reliable testing company with analysis I would like to use them. Any advice there?

 

I should have been trying all these things before this, but you keep them as a future hope and concentrate on easier remedies first. During the windows, I tend to just want to enjoy what I can in life and not deal with all this. If you do the research and reading and work you are thinking about all this hell and I feel that might bring on a wave due to the stress and worry. So during a window, I tend to put it all aside but I should doing all I can every day to find answers,new things to try.

 

It sounds like many of you are about 17-22 months out, like me and are desperate for this to end like I am. It's one thing to be sick for a year or so and your family steps in to help or try to understand, but as time goes on you need to get well and be there as others get sick or needy.

 

Nikki, do  you have any windows at all?  Alex how long are your windows at this point and how long the waves?  I am tracking this and find the windows can be up to a week but not always. Waves are between 1 and 10 days - stll too long.

 

I will wait for the lyme, look into methylation, meantime I might meet with 2 or more psychiatrists (want more than one opinion), I am forming a list of questions. Hopefully find one who admits to AD withdrawal syndrome. One who actually tells the depressed or anxious patient to have thyroid checked and considers lyme disease. If they don't do this they are unethical!!    Any other suggestions for good questions? how do I screen a psychiatrist?

 

Will be interested to see what yours says Barbara, and the MRI results.  MQ - you were diagnosed as bipolar simply because of the waves and windows?? Or do  you think you are bipolar. If the lithium helps that could be good to stay on that. I do believe those who are bipolar need a med and do well on the right one..

 

I'm going to try exercising daily and try more anti-inflammatory supplements.  I can't help thinking if only we could understand the window and wave patterns we could get more relief.  How can the brain work normally or almost entirely normally for days at a time, and then break down and be disabled for days? Why the cycles? Is it inflammation?  Do physical brain injuries cause such cycles as the brain heals from those injuriies?

 

Neurologist - I consider it but what's the use? so what if they see some kind of damage on an MRI? I wonder if they would know what to do about it. It seems any test should be done during a wave. During all the nerve firings and anxiety symptoms. What part of the brain is overactive or underactive. I guess a scan not MRI is needed for that.

 

Nikki, you mentioned another Janie. Is she doing well? Did she go back on the same med or a different one? Different class AD? Would she be willing to post? I wonder how long she had been off?

 

Zoe, I'm so sorry you have had such a bad time but glad you are doing better. Why did you start the Neurontin, just another thing to try? Did it help much?

 

GENOMIND.com - I had not heard of this but it sounds very promising. I will be studying this!! Thanks MQ!  what type of doctor is working with you on this? Psychiatrist?  Evidently a doctor needs to order it. The site does not seem to have a list of doctors using it. So I will have to talk a doctor into using it. 

 

Alexejice - I never heard of muscle testing. I will read up on it.

 

Gotta go to work now. Thank you all for suggestions and support!!

2002? zoloft.  Start of synthroid unknown.

2002? switched to paxil  - Developed restless leg syndrome. stopped all caffeine which helped for many years.

2003? switched to effexor XL 75 mg. May 2012 began taper

July 2012 stopped all effexor . Usual WD symptoms, lost excess weight, had more energy. RLS stopped immediately!

Sept 2012 depression off and on, increasing. Tried tryptophan and acupuncture

Dec 2012 severe anxiety began

February 2013 used magnolia bark for anxiety - helped but developed central sleep apnea, so I stopped it

by April 2013- stopped tryptophan, using saffron herb successfully and started HRT

June 2013 doctor noticed bradycardia. I tried very small dose cytomel sev days for hypothyroidism but seemed to strain my heart.

July 2013 stopped saffron due to slow heart and palpitations - did not help.

July 2013 Increased synthroid from 50mg to 75mg. depression and anxiety improved. Heart problems continue.

September & October 2013 - 2 month course of antibiotic for possbile lyme disease - mood and anxiety improved further.  Heart pvc's flair up at times. 

 

 

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[

 

MQ - yes I went ahead and made appointment with a lyme doctor.  I don't know how good he will be. I suspect he will assume all these symptoms are lyme if he's never heard of AD withdrawal syndrome. But I will hope for some more clues and hepful information. I might try a treatment but do worry about any herbal treatment going across the blood brain barrier and making things worse! You said a lyme doctor worked with diet and supplements to build up your brother in law's resilience BEFORE starting treatment.  What was the treatment?

 

It seems to me the key is being confident of a diagnosis as there are two schools of thought and some danger of both false positives and negatives. Some feel strongly about the need for a "Lyme literate" doctor. My BIL had doxy...?, oral med, and I don't know what else. He is a pilot and keeps this quiet as he does not want to lose his license.

 

For the methylation issue. I can't seem to get an understanding of all that. Some places it says taking the remedy it will not necessarily help. It seems worth a try. I would want to be tested before messing with the supplements.  It all seemed so complicated to know where to order the test. I'd rather not go through my insurance due to being labeled. I'd rather not be on 23and me's data base where they share the data.  But if one uses another company one would not get the results analysis, only the result? If anyone knows another reliable testing company with analysis I would like to use them. Any advice there? 23andme is cheapest, DIY, but it comes back as raw data that you would have to interpret, I understand there is a "key" available. It gives a lot of data, maybe more than you want to know at this juncture of your life. Gia had hers done with a company that is attached to MTHFR.com I believe. She linked it to the methylation thread here.

 

Will be interested to see what yours says Barbara, and the MRI results.  MQ - you were diagnosed as bipolar simply because of the waves and windows?? Or do  you think you are bipolar. If the lithium helps that could be good to stay on that. I do believe those who are bipolar need a med and do well on the right one.. I had a reaction to Cymbalta. Whether that constitutes bipolar depends on who you talk to. Usually people don't need sleep in mania. I was absolutely exhausted, and the things I did (like quit a job I was to start in 3 weeks because I didn't have a good childcare plan) were more driven by anxiety than pleasure. But I was definitely abnormal for a week! I will be going off the lithium very cautiously, and I will keep it if I need it. I've been at a sub therapeutic dose for at least two years, and two docs have said it's not doing anything from a bipolar perspective.

 

 

Nikki, you mentioned another Janie. Is she doing well? Did she go back on the same med or a different one? Different class AD? Would she be willing to post? I wonder how long she had been off?

 

Zoe, I'm so sorry you have had such a bad time but glad you are doing better. Why did you start the Neurontin, just another thing to try? Did it help much?

 

GENOMIND.com - I had not heard of this but it sounds very promising. I will be studying this!! Thanks MQ!  what type of doctor is working with you on this? Psychiatrist?  Evidently a doctor needs to order

 

It was ordered by a regular pdoc.

 

Good luck!!!

1st round Prozac 1989/90, clear depression symptoms. 2nd round Prozac started 1999 when admitted to dr. I was tired. Prozac pooped out, switch to Cymbalta 3/2006. Diagnosed with bipolar disorder due to mania 6/2006--then I was taken abruptly off Cymbalta and didn't know I had SSRI withdrawal. Lots of meds for my intractable "bipolar" symptoms.

Zyprexa started about 9/06, mostly 5mg. Tapered 4/12 through12/29/12

Wellbutrin. XL 300 mg started 1/07, tapered 1/18/13 through 7/8/13

Oxazepam mostly continuously since 6/06, 30mg since 12/12, tapered 1.17.14 through 8.26.15

11/06 Lithium 600mg twice daily, 2.2.14 400mg TID DIY liquid, 2.12.14 1150mg, 3.2.14 1100mg, 3.18.14 1075mg, 4/14 updose to 1100mg, 6.1.14 900 mg capsules 7.8.14 810mg, 8.17.14 725mg, 8.24.24 700mg...10.22.14 487.5mg, 3.9.15 475mg, 4.1.15 462.5mg 4.21.15 450mg 8.11.15 375mg, 11.28.15 362.5mg, back to 375mg four days later, 3.4.16 updose to 475 (too much going on to risk trouble)

9/4/13 Toprol-XL 25mg daily for sudden hypertension, tapered 11.12.13 through 5.3.14, last 10 days or so switched to atenolol

7.4.14 Started Walsh Protocol

56 years old

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  • Administrator

Good for you, Janie, looking into other ways to deal with your symptoms.

 

Please, everyone, be aware this is a site for going off drugs. We can't recommend other drugs for long-term treatment post-discontinuation.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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Thank you Meimeiquest. I really appreciate the additional information. Every scrap of data to help solve this puzzle and put something else on the list of "something to try' is valuable.  I will post here  on what happens with lyme doc. I am struggling to stay in a window, but about to crash. Oh Lord I hate this.

2002? zoloft.  Start of synthroid unknown.

2002? switched to paxil  - Developed restless leg syndrome. stopped all caffeine which helped for many years.

2003? switched to effexor XL 75 mg. May 2012 began taper

July 2012 stopped all effexor . Usual WD symptoms, lost excess weight, had more energy. RLS stopped immediately!

Sept 2012 depression off and on, increasing. Tried tryptophan and acupuncture

Dec 2012 severe anxiety began

February 2013 used magnolia bark for anxiety - helped but developed central sleep apnea, so I stopped it

by April 2013- stopped tryptophan, using saffron herb successfully and started HRT

June 2013 doctor noticed bradycardia. I tried very small dose cytomel sev days for hypothyroidism but seemed to strain my heart.

July 2013 stopped saffron due to slow heart and palpitations - did not help.

July 2013 Increased synthroid from 50mg to 75mg. depression and anxiety improved. Heart problems continue.

September & October 2013 - 2 month course of antibiotic for possbile lyme disease - mood and anxiety improved further.  Heart pvc's flair up at times. 

 

 

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  • 4 weeks later...

Update: Lyme doctor sent my blood to Igenx. Waiting for result.  I am also getting a test from a different lab for gluten allergies.  In the mean time I am doing MUCH better!!!   I have been having only moderate to slight symptoms for several weeks.  I think my brain is finally healing.  I am certain the lyme test will be negative. If it is positive I will not trust the lab because I am doing so much better.   Lately the symptoms are primarily evenings and mornings.   Physical symptoms greatly reduced. Anxiety is way way down and I am able to cope better and enjoy things.  I still am not back to normal yet, but I feel I really have my life back.  I am so happy and grateful. I know there can still be windows and probably will be but this is definitely the best I've felt for this long a period in the 18 months since my stopping effexor.

 

Either it was just time for my brain to reach this level of healing or MAYBE it was the coQ10 I started taking about 1.5 months ago. It may be a factor. For many months I have also been eating a handful of walnuts and some blackberries every morning on my oatmeal since both those foods are good for the brain. I started with 30 mg coQ10 and after about 1 month went up to 2 of those for 60 mg per day.  I now take a 100mg pill each day.  I still take a little magnesium either oral or lotion when I feel I need it but most days don't need it.  

 

So I now have personal evidence that the brain can finally heal and we can recover!!!! Thank you Mr. Anxious for suggesting the co Q10.  I know you said  you started feeling better after taking it, so that inspired me to try it and maybe it really has done something.

2002? zoloft.  Start of synthroid unknown.

2002? switched to paxil  - Developed restless leg syndrome. stopped all caffeine which helped for many years.

2003? switched to effexor XL 75 mg. May 2012 began taper

July 2012 stopped all effexor . Usual WD symptoms, lost excess weight, had more energy. RLS stopped immediately!

Sept 2012 depression off and on, increasing. Tried tryptophan and acupuncture

Dec 2012 severe anxiety began

February 2013 used magnolia bark for anxiety - helped but developed central sleep apnea, so I stopped it

by April 2013- stopped tryptophan, using saffron herb successfully and started HRT

June 2013 doctor noticed bradycardia. I tried very small dose cytomel sev days for hypothyroidism but seemed to strain my heart.

July 2013 stopped saffron due to slow heart and palpitations - did not help.

July 2013 Increased synthroid from 50mg to 75mg. depression and anxiety improved. Heart problems continue.

September & October 2013 - 2 month course of antibiotic for possbile lyme disease - mood and anxiety improved further.  Heart pvc's flair up at times. 

 

 

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Yahoo...and this is why we just can't give up! Hope things are going well with your family issues.

1st round Prozac 1989/90, clear depression symptoms. 2nd round Prozac started 1999 when admitted to dr. I was tired. Prozac pooped out, switch to Cymbalta 3/2006. Diagnosed with bipolar disorder due to mania 6/2006--then I was taken abruptly off Cymbalta and didn't know I had SSRI withdrawal. Lots of meds for my intractable "bipolar" symptoms.

Zyprexa started about 9/06, mostly 5mg. Tapered 4/12 through12/29/12

Wellbutrin. XL 300 mg started 1/07, tapered 1/18/13 through 7/8/13

Oxazepam mostly continuously since 6/06, 30mg since 12/12, tapered 1.17.14 through 8.26.15

11/06 Lithium 600mg twice daily, 2.2.14 400mg TID DIY liquid, 2.12.14 1150mg, 3.2.14 1100mg, 3.18.14 1075mg, 4/14 updose to 1100mg, 6.1.14 900 mg capsules 7.8.14 810mg, 8.17.14 725mg, 8.24.24 700mg...10.22.14 487.5mg, 3.9.15 475mg, 4.1.15 462.5mg 4.21.15 450mg 8.11.15 375mg, 11.28.15 362.5mg, back to 375mg four days later, 3.4.16 updose to 475 (too much going on to risk trouble)

9/4/13 Toprol-XL 25mg daily for sudden hypertension, tapered 11.12.13 through 5.3.14, last 10 days or so switched to atenolol

7.4.14 Started Walsh Protocol

56 years old

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I am so glad for you Janie.

I am very close to you;19 months off Effexor, and also doing MUCH better.

Yes, it is a fact: we can heal.

 

Hugs,A.

4 years aprox. on 150mgs.Effexor for situational major depression.No AD before.
Tapered 150-0mgs in 3 months.

Tapered Quetiapine,Xanax in the last 18 months.NO med of any kind anymore.
First 3 months off acute w/d
Protracted w/d ever since.
Symptoms:Anxiety,anhedonia,insomnia,tinnitus,PSSD

04/13/2014 Awful Relapse.Recovered fairly fast.

3 years and 4 months off.

waves and windows.Very much recovered.

November 2015,health issue.Setback.
 

 

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  • Administrator

Janie, I merged your "I have to go back on a med - but what med?" topic with your Intro topic because it turned into a very promising update on your progress!

 

You can look back on this topic and see how far you've come. And others will be immensely heartened by your story. You have been very brave.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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Hi Janie

So happy to hear your are doing so much better.  

What exactly is the coQ10 helping with?

Started Effexor August 2012 Sept'12-150mg=extreme anxiety Oct'12 cut half-75mg severe wds

Feb 2013 68.5mg. Mar'13- 65mg. Apr'13-59mg. May'13-57mg. June '13-52mg Aug'13 49.75mg.

Sep'13-48.75. Nov'13-47mg Dec'13-45..5mg

May 2014 42mg. Jun'14 40mg (depressive mood started). Aug'14 -40mg/ started brintellix 2.5mg

Oct '14 -39 Nov'14 36.89 Dec'14 34.45

Jan 2015- 31 Feb'15 29mg. Mar'15 26.72. Apr'15 24.48. May'15 22.31mg. Jun'15 20.30mg

Aug'15-18.89. Oct'15 16.96. Nov/16- 16.10. Dec/15- 15mg

Jan 2016-14.22. May'16 11.45. Aug'16-9.60. Sep/16- 8.88mg. Oct/16- 8.39mg. Nov/16- 8.13. Dec/16- 7.89

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Update:  After my nice long window and writing how great things were going, I did enter another wave and have been suffering again.  A few days into the wave my Lyme doctor received the Igenex Lyme test results and says it is positive!   So I guess whatever I'm going through is not valid for others since I must be in a different category as a Lyme patient.  I'm not glad for this diagnosis, but maybe I am in a way since I was feeling desperate again to get on a med or try something.   I still believe my problem is AD withdrawal for a great part, or in combination perhaps with the Lyme, if I even have Lyme.  

 

The waves are still very bad.  Many of the strong neurological symptoms (electrical nerve pain or neuropathy like pain) had stopped and not returned, even with this current wave, so I assumed I was on a road to healing. But I still have a burning, churning wrenching feeling in my core, my gut, and heart areas much of the time. It seems to vibrate or flutter and move around. Of course on the bad days I also have mild to extreme anxiety and general weepy depression, all of which is as bad as ever.   Also still get eye focusing problems. It seems my symptoms may be above and beyond the typical withdrawal syndrome so maybe the Lyme diagnosis makes sense.  It could also explain the morphing or stages of symptoms - spirochetes attacking the brain, then heart, then the nerves...?  Windows and waves are typical in Lyme as I understand it as the spirochetes invade a new area and then rest/go dormant.  Advanced chronic Lyme involves psychiatric anxiety, anger, suicidal symptoms.

 

I have many questions for the Lyme doctor and want to start a treatment NOW but must wait for my next appointment.  I hope I can make it because at times I feel like I'm really going to lose it.  I need help soon!!  Hoping Lyme treatment will help and help quickly so I can avoid returning to AD.  Every day seems like an eternity to get through.

 

I will try to keep updating my story.   Should we all be tested for Lyme by Igenex? What if that is the real culprit?  I wonder whether any of you have been tested by Igenex for Lyme with a negative result?  Just as we all should investigate thyroid and vitamin deficiencies as causes or contributors for anxiety - Lyme should be tested as well -and it apparently needs to be Igenex. Regular lab Western blots are not reliable.

2002? zoloft.  Start of synthroid unknown.

2002? switched to paxil  - Developed restless leg syndrome. stopped all caffeine which helped for many years.

2003? switched to effexor XL 75 mg. May 2012 began taper

July 2012 stopped all effexor . Usual WD symptoms, lost excess weight, had more energy. RLS stopped immediately!

Sept 2012 depression off and on, increasing. Tried tryptophan and acupuncture

Dec 2012 severe anxiety began

February 2013 used magnolia bark for anxiety - helped but developed central sleep apnea, so I stopped it

by April 2013- stopped tryptophan, using saffron herb successfully and started HRT

June 2013 doctor noticed bradycardia. I tried very small dose cytomel sev days for hypothyroidism but seemed to strain my heart.

July 2013 stopped saffron due to slow heart and palpitations - did not help.

July 2013 Increased synthroid from 50mg to 75mg. depression and anxiety improved. Heart problems continue.

September & October 2013 - 2 month course of antibiotic for possbile lyme disease - mood and anxiety improved further.  Heart pvc's flair up at times. 

 

 

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  • 3 months later...

Janie update? How have you been?

2007-2012started Effexor xr 225mg -150mg- Varied2months of Taper,(March 22/2012 Off Med/in W/D)Currently No medicationMarch 22/2012- August 16/2012 - Totally Off Effexor( Rough Rough time) Reinstatement for a week(didn't work)****** New Doctor******* Very nice/helpful and in touch.Tried Zoloft- No successAUGUST 17/2012- STARTED 37.5 EFFEXOR FOR ONE WEEK - NOT GOOD < STOPPED.Started Buspar Oct 11th 2012----10 mg for the first 7 days and then 15mg a day---- Taking a new route----Racing thoughts - Gone.Oct 9th ( Done Zoloft,wellbutrin week project trial to feel better) - OFFICIALLY OFF ANTI DEPRESSANT !Oct 26 - Raised Buspar to 20mg a day- Tolerating wellJan 2nd 2013-

Reduce Buspar until full off march 20th 2015 Off all medication !

Tried natural supplements to no avail

Gluten/sugar free since december 2013

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Hi Mr. anxious. Thanks for thinking of me. I've been wondering how you are doing too.   I have not been on this site for a while, since I'm concentrating on learning about lyme disease.  I really think I am suffering from both protracted withdrawal and lyme.   It's hard to know what symptoms are from which - both cause anxiety. I am better but still get nerve pain, tingling, twitching, difficulty walking at times, pains in abdomen and heart area.  I've been on major oral antibiotics for lyme for 3 months now. Not sure I'm seeing improvement from the AB or from other things I'm doing.

 

I've learned so much about lyme. It's an awful disease, plus there are co-infections. I've been meaning to post some things I've learned about than can help readers here. One thing I am now using is low dose naltrexone.  This is used to boost endorphins and that boosts the immune system..  I believe it has improved my mood and reduced anxiety.  It seems much safer than any kind of antidepressant. It temporarily blocks endorphin receptors in the brain but only briefly. That tricks the brain to produce MORE endorphins.  It does not stay in the body or have any lasting effect. The 'low dose' is very different from the higher dose used for drug withdrawal. I haven't checked, but perhaps there are other posts about this.

 

I am also taking L Tryptophan again so maybe that is helping some.

 

I am also learning about ways to detox the brain.  There are herbs used for lyme neurological symptoms, which might also boost brain health for anyone. I have not tried any of them yet but will probably get some soon. I am still researching this. One example is Siberian ginseng which acts as an antidepressant, antistressor, increases mental clarity, and helps with mental fog.

 

I've been suffering from bad abdominal pain. It gets worse when lying down, so seems to be related to acid refllux.  I suspect the 2 years of anxiety I've had may have given me an ulcer. I've been put on a proton pump inhibitor and am doing better.  This can actually heal ulcers if they are not caused by h-pylori. So I am feeling better but perhaps not from the antibiotics and I hope to wean off the acid med.

 

You have done well to be weaning off buspar.  I think I started having more good days at 18 months. Felt more healed from withdrawal. The windows and waves continue but seem different. I think the lyme aspect is now in the forefront of my symptoms.  Your brain is still healing and recovering. I read your post that you don't feel back to a level of good feelings.  It could be just the general stress of what we've been through. It takes time to believe in health again, to believe there is a way to live symptom free and get our lives back. In time we can feel more optimistic and positive.

 

As you know, healthy eating is important to brain health.  Taking probiotics can help gut flora which has been proven to affect neurotransmitters.  If you are not taking any, it could be something to try for 6 months or so. There are many things to try to help one's moods besides medications. Keep trying new things. Also I'm learning about eating an anti-inflammation diet.  For lyme, inflammation worsens symptoms including psychiatric depression, irritability, brain fog and anxiety.  Keeping the body alkaline is another big thing.  I have given up sugar and gluten to avoid stressing my body and help my immune system deal with the lyme.

 

Anyway that is what's happening to me. I've had some horrible spells where I felt I had to go back on an antidepressant, but managed to hold off and not give into that. Sometimes I feel quite normal and have lots of hope for a full recovery. Other times I feel I may as well die, or that I probably have permanent brain and nerve damage. So I am still on the roller coaster. Still struggling, but anxiety is less and less often. I am pleased.

2002? zoloft.  Start of synthroid unknown.

2002? switched to paxil  - Developed restless leg syndrome. stopped all caffeine which helped for many years.

2003? switched to effexor XL 75 mg. May 2012 began taper

July 2012 stopped all effexor . Usual WD symptoms, lost excess weight, had more energy. RLS stopped immediately!

Sept 2012 depression off and on, increasing. Tried tryptophan and acupuncture

Dec 2012 severe anxiety began

February 2013 used magnolia bark for anxiety - helped but developed central sleep apnea, so I stopped it

by April 2013- stopped tryptophan, using saffron herb successfully and started HRT

June 2013 doctor noticed bradycardia. I tried very small dose cytomel sev days for hypothyroidism but seemed to strain my heart.

July 2013 stopped saffron due to slow heart and palpitations - did not help.

July 2013 Increased synthroid from 50mg to 75mg. depression and anxiety improved. Heart problems continue.

September & October 2013 - 2 month course of antibiotic for possbile lyme disease - mood and anxiety improved further.  Heart pvc's flair up at times. 

 

 

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  • Moderator Emeritus

Janie, what a strong and accepting soul you are!  Lyme disease and withdrawal, I can't imagine.  I hear lots of courage in your post, it's very inspiring.  Please keep us updated.  

3 Years 150 mgs Effexor

2 month taper down to zero

3 terrible weeks at zero

Back up to 75 mgs

2 months at 75

6 or so months back to regular dose of 150 - was able to restabilize fine.

3 month taper back to zero

1 HORRENDOUS week at zero

2 days back up to 37.5

3 days back up to 75

One week at 150 - unable to stabilize.

Back down to 75 mgs

At 75 mgs (half original dose) and suffering withdrawal symptoms since October 2012.

 

"It is a radical cure for all pessimism to become ill, to remain ill for a good while, and then grow well for a still longer period." - Nietzsche

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Hi Janie, sounds like you are working so hard! I too am just starting to work on the gut and autoimmunity. A chiro, Dr. Axe, posted an interesting article about that. I think you could google Dr. Axe leaky gut bone broth (sorry I can't seem to do links). Also, I was just tested for pyrrole disorder, which is common in oxidative stress, which Lyme can surely cause. It depletes zinc and vitamin B6. It's a can-order-yourself test at Pyroluriatesting.com. I will look forward to more of your ideas. I hope you are on the path to some real help!

1st round Prozac 1989/90, clear depression symptoms. 2nd round Prozac started 1999 when admitted to dr. I was tired. Prozac pooped out, switch to Cymbalta 3/2006. Diagnosed with bipolar disorder due to mania 6/2006--then I was taken abruptly off Cymbalta and didn't know I had SSRI withdrawal. Lots of meds for my intractable "bipolar" symptoms.

Zyprexa started about 9/06, mostly 5mg. Tapered 4/12 through12/29/12

Wellbutrin. XL 300 mg started 1/07, tapered 1/18/13 through 7/8/13

Oxazepam mostly continuously since 6/06, 30mg since 12/12, tapered 1.17.14 through 8.26.15

11/06 Lithium 600mg twice daily, 2.2.14 400mg TID DIY liquid, 2.12.14 1150mg, 3.2.14 1100mg, 3.18.14 1075mg, 4/14 updose to 1100mg, 6.1.14 900 mg capsules 7.8.14 810mg, 8.17.14 725mg, 8.24.24 700mg...10.22.14 487.5mg, 3.9.15 475mg, 4.1.15 462.5mg 4.21.15 450mg 8.11.15 375mg, 11.28.15 362.5mg, back to 375mg four days later, 3.4.16 updose to 475 (too much going on to risk trouble)

9/4/13 Toprol-XL 25mg daily for sudden hypertension, tapered 11.12.13 through 5.3.14, last 10 days or so switched to atenolol

7.4.14 Started Walsh Protocol

56 years old

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Hi Janie....I saw your post as I come on the site and I immediately thought of the EMDR Therapy I did when WDing from Lexapro back in 2007-8.  It was very helpful.  It was very expensive and my insurance covered it at the time.  Most therapists do not take insurance these days, so I have done it again.  Just doing CBT and an at home program for anxiety/depression.

 

Check out EMDR on the net.  It was great.

 

Best regards

Intro: http://survivingantidepressants.org/index.php?/topic/1902-nikki-hi-my-rundown-with-ads/

 

Paxil 1997-2004

Crossed over to Lexapro Paxil not available

at Pharmacies GSK halted deliveries

Lexapro 40mgs

Lexapro taper (2years)

Imipramine

Imipramine and Celexa

Now Nefazadone/Imipramine 50mgs. each

45mgs. Serzone  50mgs. Imipramine

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Hi Janie

I havent spoken to you in awhile.  

Im glad you are doing better.

As for me, not well.

I have a wave of depression that does not let up.  How long did it take you to feel better after a decrease?  It's been a month living in a black hole.

Started Effexor August 2012 Sept'12-150mg=extreme anxiety Oct'12 cut half-75mg severe wds

Feb 2013 68.5mg. Mar'13- 65mg. Apr'13-59mg. May'13-57mg. June '13-52mg Aug'13 49.75mg.

Sep'13-48.75. Nov'13-47mg Dec'13-45..5mg

May 2014 42mg. Jun'14 40mg (depressive mood started). Aug'14 -40mg/ started brintellix 2.5mg

Oct '14 -39 Nov'14 36.89 Dec'14 34.45

Jan 2015- 31 Feb'15 29mg. Mar'15 26.72. Apr'15 24.48. May'15 22.31mg. Jun'15 20.30mg

Aug'15-18.89. Oct'15 16.96. Nov/16- 16.10. Dec/15- 15mg

Jan 2016-14.22. May'16 11.45. Aug'16-9.60. Sep/16- 8.88mg. Oct/16- 8.39mg. Nov/16- 8.13. Dec/16- 7.89

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Thank you all for your posts.  It is unbelievably  moving to feel there are you guys out there who can truly understand what I suffer and truly care. Family and doctors are so unsupportive at times. I cannot find a therapist who is good either.  I know part of the healing is to feel safe and loved. I am not getting enough help and support and love.   I have trouble preparing food for self and eating properly. I am working thank god but that leaves little time for research and rest and keeping up with other life problems. 

 

I'm so tired of being needy.  I'd like to be more of a giver and do what I can at times, but mostly I am too sick and down to give to anyone support or help. I'm so sorry you are not doing well Lexy. I have not been following your posts.  I can only say that I do feel I felt a shift about 18 months after stopping Effexor.  I never get brain zaps where I felt I was about to pass out for a second.  The auditory 'door slam' thing I called it is gone.  The panicky anxiety is mostly gone.  It seems like a different anxiety now.  Have you tried l-tryptophan and probiotics?  do you try exercise for endorphins which can really lift depression for at least a few hours.  the worst is when the dark moods or anxiety have no breaks or relief.  when there are good times, you know your brain is CAPABLE of functioning well, so you feel you just need to heal and maintain it. but when there are no good periods you feel broken and have less hope for health. Are you over the anxiety at least?  I often have both anxiety and depression together. Since you are still on Effexor, have you considered switching to Prozac and then tapering off that, which I've heard is easier.  If I had it to do over I would probably go that route.

 

I've concluded we are in danger of not getting well if there are bad things in our life. we need to address and get help with --relationships, money problems, etc.  That is something I'm struggling with - fixing things that are getting me down. I am intrigued by the EMDR therapy.  I thought that was for trauma or abuse - not in my history - so would it be helpful to me?  I'll try to find out more.

 

you do wonder how many people walking around who seem happy and able to cope with life's problems and the world's horrors are actually on a med.  I suppose many people just have learned to be positive or have good genes giving them  a sunny attitude.  I really would like to find a CBT therapist but there are none in my town.  you have to go to a bigger city and even then, finding one in my insurance plan is a challenge.  I do not have enough leave time to travel that far for appointments. it's frustrating trying to get the help  you need. Nikki, what is the at home program you do??

 

I have to get ready for work. Thank you all for your comments and support. This website is like a secret lifeline above and beyond our in-person family and friends and doctors. Love and prayers for each of you!

2002? zoloft.  Start of synthroid unknown.

2002? switched to paxil  - Developed restless leg syndrome. stopped all caffeine which helped for many years.

2003? switched to effexor XL 75 mg. May 2012 began taper

July 2012 stopped all effexor . Usual WD symptoms, lost excess weight, had more energy. RLS stopped immediately!

Sept 2012 depression off and on, increasing. Tried tryptophan and acupuncture

Dec 2012 severe anxiety began

February 2013 used magnolia bark for anxiety - helped but developed central sleep apnea, so I stopped it

by April 2013- stopped tryptophan, using saffron herb successfully and started HRT

June 2013 doctor noticed bradycardia. I tried very small dose cytomel sev days for hypothyroidism but seemed to strain my heart.

July 2013 stopped saffron due to slow heart and palpitations - did not help.

July 2013 Increased synthroid from 50mg to 75mg. depression and anxiety improved. Heart problems continue.

September & October 2013 - 2 month course of antibiotic for possbile lyme disease - mood and anxiety improved further.  Heart pvc's flair up at times. 

 

 

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  • Moderator Emeritus
 I am intrigued by the EMDR therapy.  I thought that was for trauma or abuse - not in my history - so would it be helpful to me?  I'll try to find out more.

 

 

EMDR has proven to be quite effective in the treatment of trauma, but it also can be used to treat panic attacks, phobias, disturbing memories and a few other problems:

 

EMDR international association

 

 I really would like to find a CBT therapist but there are none in my town.  you have to go to a bigger city and even then, finding one in my insurance plan is a challenge.  I do not have enough leave time to travel that far for appointments. it's frustrating trying to get the help  you need.

 

Many therapists now offer sessions via skype, so you are not limited to someone close to home.  If you search for the kind of therapy you are interested in, along with the keyword skype, it will bring up some options.

I'm not a doctor.  My comments are not medical advise. These are my opinions based on my own experience and what I've learned. Please discuss your situation with a medical practitioner who has knowledge of tapering and withdrawal...if you are lucky enough to find one.

My Introduction Thread

Full Drug and Withdrawal History

Brief Summary

Several SSRIs for 13 years starting 1997 (for mild to moderate partly situational anxiety) Xanax PRN ~ Various other drugs over the years for side effects

2 month 'taper' off Lexapro 2010

Short acute withdrawal, followed by 2 -3 months of improvement then delayed protracted withdrawal

DX ADHD followed by several years of stimulants and other drugs trying to manage increasing symptoms

Failed reinstatement of Lexapro and trial of Prozac (became suicidal)

May 2013 Found SA, learned about withdrawal, stopped taking drugs...healing begins.

Protracted withdrawal, with a very sensitized nervous system, slowly recovering as time passes

Supplements which have helped: Vitamin C, Magnesium, Taurine

Bad reactions: Many supplements but mostly fish oil and Vitamin D

June 2016 - Started daily juicing, mostly vegetables and lots of greens.

Aug 2016 - Oct 2016 Best window ever, felt almost completely recovered

Oct 2016 -Symptoms returned - bad days and less bad days.

April 2018 - No windows, but significant improvement, it feels like permanent full recovery is close.

VIDEO: Where did the chemical imbalance theory come from?



VIDEO: How are psychiatric diagnoses made?



VIDEO: Why do psychiatric drugs have withdrawal syndromes?



VIDEO: Can psychiatric drugs cause long-lasting negative effects?

VIDEO: Dr. Claire Weekes

 

 

 

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  • 3 years later...

Hi Janie and everyone else!

 

I know this thread is very old but just curious to know  how has it been Janie?

 

Are you better now?

 

I am 230 days off of Sertraline (Zoloft SSRI) and I feel like I am dying and just hoping to know if there is still a long way ahead for me or not. Suffering from 41 Kg of weight loss, severe indigestion issues, not absorbing nutrients, acid reflux, shortness of breath, tachycardias, skipped beats (I actually suffer from Atrial Fibrillation for which I have had three heart ablation operations already so in my case it is a bit more dangerous having all these withdrawal effects for my heart), breathing stopping when I am about to fall asleep (latest symptom to add to all the others which is killing me at night).... etc...

 

I hope all of you who posted in this topic since 2013 are all doing fine and hope to hear a reply from any of you!

 

Take care!

Edited by Altostrata
approved post

Paxil free since beginning of 2011, after 10 months taper while on cruise ships (started Paxil in 2006 due to severe anxiety caused by a Atrial Fibrillation and Atrial Flutter episode in 2006)

Currently on Zoloft (Sertraline) since March 2012. Tried to taper 5 times, all failed, currently on 6th taper attempt, at 12.5mg (1/4 tablet) since 17/09/2016.

3x heart operations for Atrial Fibrillation, Asthma, Hypermobility Syndrome, Hiatal Hernia, Acid Reflux, Arthritis

Flecainide 100mg twice daily

Verapmil 120mg once daily

Seretide 50/500 twice daily

Take 4000 mg Omega 3 fish oil daily (key to getting off of SSRIs)

Betaine HCL for digestion (only with medium to high amount of protein meals)

Vitamin C, B complex, D3, Milk Thistle, Cranberry, Magnesium Citrate and Magnesium Chloride

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  • 1 year later...
  • Administrator

 

Hello, Janie, how are you doing?

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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  • ChessieCat changed the title to Janie: is there any treatment for protracted withdrawal

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