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Jolene73: chronic pain, sensitivity and dosulpin withdrawl


Jolene73

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Hi everyone

I was on dosulpein, a tricyclic for 8 years for chronic pain, fibromyalgia and depression. Came off gradually 6 years ago, got sick again a year and a half later and went back on for 2 years. Due to a stressful situation (being given adrenaline by mistake) I cam off the dosulpein too quickly and since then life has been hell. It has been nearly 3 years. I have been disabled by this. I have twitching all over, severe facial and head pain and don't sleep. Also my feet started to turn blue: the autonomic dysregulation we read about. Every time I get so low, I try and antidepressants again or any kind of prescription drug and my body goes haywire with pain. In desperation, I recently had botox shots in my shoulders neck and spine and head. I am really in hell, my migraines have intensified beyond belief, I am more light and noise sensitive than ever. I am in bed all the time. I can't hardly walk. Oh and my feet have gone even more purple. I cry all the time and can't sleep. I am very very low. I only got out of my wheelchair last year and I am now back in it. Reaching my lowest point, I have started 25th of dosulpein again in absolute desperation. My migraines are so bad you can see the nerves twitch in my face and neck. I have nothing left. I don't know what to do as I have cfs from all this dysautonomia. I had lyme and was doing well on the dosulpein before all this. I am at a complete loss as to whether I am doing anything right. I take supplements that don't help and could be adding to the problem. I am doing Epsom salt baths and taking activated charcoal to try and detox this stuff out of me, yet at the same time, I feel I need medication for the pain and severe depression. Please, can anyone offer words of advice? I am absolutely desperate from the migraines and head pain....

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  • Moderator Emeritus

Hi Jolene

 

I'm sorry to hear you have been experiencing such distress. Your situation is complicated and I don't feel well positioned to offer advice. More experienced heads will be along soon.

 

In the mean time it would be great if you could put your drug history in your signature line. Here is a link to a post on how to do that - http://survivingantidepressants.org/index.php?/topic/893-please-put-your-withdrawal-history-in-your-signature/

 

In particular, it's important that we understand what you are taking now, how often and at what time of day (I'm not sure what you mean by 'I have started taking 25th of dosulpein again, And what supplements are you taking? They can make things worse.

 

Take care

 

Dalsaan

Please note - I am not a medical practitioner and I do not give medical advice. I offer an opinion based on my own experiences, reading and discussion with others.On Effexor for 2 months at the start of 2005. Had extreme insomnia as an adverse reaction. Changed to mirtazapine. Have been trying to get off since mid 2008 with numerous failures including CTs and slow (but not slow enough tapers)Have slow tapered at 10 per cent or less for years. I have liquid mirtazapine made at a compounding chemist.

Was on 1.6 ml as at 19 March 2014.

Dropped to 1.5 ml 7 June 2014. Dropped to 1.4 in about September.

Dropped to 1.3 on 20 December 2014. Dropped to 1.2 in mid Jan 2015.

Dropped to 1 ml in late Feb 2015. I think my old medication had run out of puff so I tried 1ml when I got the new stuff and it seems to be going ok. Sleep has been good over the last week (as of 13/3/15).

Dropped to 1/2 ml 14/11/15 Fatigue still there as are memory and cognition problems. Sleep is patchy but liveable compared to what it has been in the past.

 

DRUG FREE - as at 1st May 2017

 

>My intro post is here - http://survivingantidepressants.org/index.php?/topic/2250-dalsaan

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Hi Salsa an

Thank you for your reply. I meant to say 25mg of dosulpein. I am also taking a fish oil, 300 mg of iron, 2000 mg of vit c, alpha lipoic acid for liver function and 300mg of magnesium citrate on to of the charcoal and Epsom salt baths.

The 20 shots of botox was done 5 weeks ago. I only tried to start the dosulpein yesterday in utter desperation of pain and depression.

At the weekend I tried smoking some pure weed to try and help pain, but my heart started thumping wildly and all my nerves started twitching. When I stood up you could see all my never as and muscles in the front of my legs and knees juddering up and down I was terrified I was going to die.

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  • Moderator Emeritus

Welcome to the forum, Jolene. I second all that Dalsaan said.  We really need to know more detail about your history before we can offer any suggestions. I, too, am sorry that you're in such terrible pain.

Psychotropic drug history: Pristiq 50 mg. (mid-September 2010 through February 2011), Remeron (mid-September 2010 through January 2011), Lexapro 10 mg. (mid-February 2011 through mid-December 2011), Lorazepam (Ativan) 1 mg. as needed mid-September 2010 through early March 2012

"Never attribute to malice that which is adequately explained by stupidity." -Hanlon's Razor


Introduction: http://survivingantidepressants.org/index.php?/topic/1588-introducing-jemima/

 

Success Story: http://survivingantidepressants.org/index.php?/topic/6263-success-jemima-survives-lexapro-and-dr-dickhead-too/

Please note that I am not a medical professional and my advice is based on personal experience, reading, and anecdotal information posted by other sufferers.

 

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  • Administrator

Hi Jolene,

 

I did a little research on two of your supplements that jumped out at me. 

 

Too much vitamin C can cause headaches and insomnia - why are you taking vitamin C? 

 

I think you are probably taking a 300 mg type of iron (for example, a 300 mg tablet of ferrous gluconate contains 35 mg of iron), but I hope you aren't consuming 300 mg of iron as that would be excessive. Excess iron can result in:

  • Chronic fatigue (the most common symptom)
  • Joint pain/arthritis
  • Abdominal pain
  • Depression

Why are you taking iron?  If you have anemia then I can understand supplementing iron.  Do you have regular iron tests to see what your iron level is?

 

Karma

2007 @ 375 mg Effexor - 11/29/2011 - 43.75 mg Effexor (regular) & .625 mg Xanax

200 mg Gabapentin 2/27/21 - 194.5 mg, 5/28/21 - 183 mg, 8/2/21 - 170 mg, 11/28/21 - 150 mg, 4/19/22 - 122 mg; 8//7/22 - 100 mg
Xanax taper: 3/11/12 - 0.9375 mg, 3/25/12 - 0.875 mg, 4/6/12 - 0.8125 mg, 4/18/12 - 0.75 mg; 1/16 0.6875 mg; at some point 0.625 mg
Effexor taper: 1/29/12 - 40.625 mg, 4/29/12 - 39.875 mg, 5/11/12 - Switched to liquid Effexor, 5/25/12 - 38 mg, 7/6/12 - 35 mg, 8/17/12 - 32 mg, 9/14/12 - 30 mg, 10/19/12 - 28 mg, 11/9/12 - 26 mg, 11/30/12 - 24 mg, 01/14/13 - 22 mg. 02/25/13 - 20.8 mg, 03/18/13 - 19.2 mg, 4/15/13 - 17.6 mg, 8/10/13 - 16.4 mg, 9/7/13 - 15.2 mg, 10/19/13 - 14 mg, 1/15/14 - 13.2 mg, 3/1/2014 - 12.6 mg, 5/4/14 - 12 mg, 8/1/14 - 11.4 mg, 8/29/14 - 10.8 mg; 10/14/14 - 10.2 mg; 12/15/14 - 10 mg, 1/11/15 - 9.5 mg, 2/8/15 - 9 mg, 3/21/15 - 8.5 mg, 5/1/15 - 8 mg, 6/9/15 - 7.5 mg, 7/8/15 - 7 mg, 8/22/15 - 6.5 mg, 10/4/15 - 6 mg; 1/1/16 - 5.6 mg; 2/6/16 - 5.2 mg; 4/9 - 4.8 mg; 7/7 4.5 mg; 10/7 4.25 mg; 11/4 4.0 mg; 11/25 3.8 mg; 4/24 3.6 mg; 5/27 3.4 mg; 7/8 3.2 mg ... 10/18 2.8 mg; 1/18 2.6 mg; 4/7 2.4 mg; 5/26 2.15mg; 8/18 1.85 mg; 10/7 1.7 mg; 12/1 1.45 mg; 3/2 1.2 mg; 5/4 0.90 mg; 6/1 0.80 mg; 6/22 0.65 mg; 08/03 0.50 mg, 08/10 0.45 mg, 10/05 0.325 mg, 11/23 0.2 mg, 12/14 0.15 mg, 12/21 0.125 mg, 02/28 0.03125 mg, 2/15 0.015625 mg, 2/29/20 0.00 mg - OFF Effexor


I am not a medical professional - this is not medical advice. My suggestions are based on personal experience, reading, observation and anecdotal information posted by other sufferers

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Hi

I've been trying to find how to add my history to my profile/signature and there is no option that I can find. If I click on my name, it gives me my profile but no option to do that. The boxes in the top right corner give me no option.

I am taking iron because I have 8% transferrin saturation rate and the cfs doctor told me to take it. I have always been anaemic however, even when I had less pain and my go didn't seem that bothered I was low. I don't really trust the cfs doctor anymore as they were the ones that gave me the adrenaline that stressed me out and caused me to come off the dosulpein in the first place.

Also, last year in desperation,I went on nortriptyline 40mg. That caused more pain but made me do more (to escape the pain). I was told to come off as it wasn't working and then started feeling really bad, sweating, pain getting worse, stressing etc...The botox was a final last cry for help and all its done it's put me into further pain.

The pain clinic want me to have a ketamine infusion but I am so worried my nerves will not withstand the addition of another different drug. My cns is already massively confused. I just don't know what to do for the best. Go back on dosulpein and stick to it, even though it stopped working? Something needs to tell my nerves and brain to calm down as otherwise I don't know what I will do. I am in as much pain as any human can tolerate. Particularly the migraines. I am so close to the edge... Please help.

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Also when I go onto a medication I feel an immediate 'sensitization' feeling: my migraine and nerves become very irritated and I can't lift my arms very well. I normally have that problem on nothing but not intense sharp migraine. It's like my brain is interpreting something that is supposed to make me feel better and making it an irritant. And medications that make other people sleepy don't do that to me, in fact it's the opposite. I've been told I have thoracic and cervical migraine, even when In NOT on anything. I have no idea what to anymore to calm these nerves down.

Apologies for not being able to find the signature section. I use my phone as a computer.

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I can help you with the easy part....go to your name, to Settings, to Signature.

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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On my phone there isn't a settings or signature part. If I click on my name there us just basic information with no option to change it. I maybe able to use a computer later if my pain and eyes don't stop me. Apologies.

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  • Administrator

Welcome, Jolene.

 

Yes, you have a complex situation. It sounds like your nervous system is sensitized to neuroactive substances. Many people here who have suffered adverse drug reactions or withdrawal symptoms have similar sensitization.

 

How are you feeling after reinstating 25mg doselpin?

 

The activated charcoal may also be a problem. It is blocking absorption of vitamins. "Detox" can be too aggressive an approach to take when people are hypersensitive.

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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I think it's making the migraine more sensitive...its hard to tell but it feels like it.

I am due to have IV Ketamine tomorrow to try and break the pain cycle and am beside myself with worry about having it or not....

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I have been taking the dosulpein during the day so that I can 'feel' it.

I think the botox sensitized my nerves further, just the trauma of it jabbing my nerves as well as the Toxin.

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  • Administrator

What are the symptoms you are feeling from dosulpin?

 

Have your doctors ever seen the ketamine treatment break a pain cycle like yours? If not, they are experimenting with anything they have on hand.

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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Sharper nerve pains around the back of my head and face, migraine in quality. Activating. Pulling. Very sharp, can see them twitching. Not sure if this is the medication or just breakthrough pain.

I think I need to ask the doctor if it is used in antidepressant withdrawl pain.

Any views please? Thank you.

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  • Administrator

If you're talking about ketamine -- ketamine is a big fad right now. It's not clear what it's good for, but doctors are using it for just about anything when they run dry of other ideas.

 

Have you discussed low-dose naltrexone with any of your doctors? Now, that's an experimental treatment that might make some sense for someone with pain, see http://www.ncbi.nlm.nih.gov/pubmed/23359310

 

My sense is you need to get away from psychiatric treatments and doctors. While iatrogenic, your symptoms are not psychosomatic -- caused by your imagination. They are caused by dysregulated body processes and strenuous psychiatric treatment does not set this right.

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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Sorry to ask but what iasotrogenic mean? Apologies for bad spelling.

The ketamine was suggested by my pain doctor at the National Neurology hospital here in London. I did try ldn for a short while but it did nothing. My pain is very very severe neuralgia (think trigeminal neuralgia crossed with severe migraine and nerve pain).

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  • Administrator

Iatrogenic means caused by drugs or medical treatment.

 

Does your pain doctor have any direct experience with ketamine to relieve pain?

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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Yes he uses it quite a lot. I had lidocaine last year which did nothing. Pain is worsening on a day to day basis.

He suggested ketamine as it works in a different way: desensitizes nerves apparently. I am still undecided and it's tomorrow morning, although I am allowed to speak to him first. They keep checking how you are every few minutes....

I'm worried because of my past history and also because of the reaction I had to the weed.

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  • Administrator

Ketamine is an anesthetic.

 

You are most likely hypersensitive to all neuroactive substances.

 

How is your reinstatement of dosulpin going?

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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Ketamine for pain? Please look into this. I've heard a lot of bad things about this drug. Can give similar experiences as LSD...nasty.

2008 - Doctors appointment with stress induced anxiety led to Citalopram prescription.

Severe adverse reaction

Mirtazapine prescribed - adverse reaction but told to stay on.

Poop out - December 2013

15mg

Currently on 13.5mg,

April 12mg

May 10th - 11mg

June 10th - 10mg

July 8th - 9mg

September - 0mg

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That's what I'm worried about. But it is very low dose and my pain doctor is doing the infusion himself so I can ask for a very small amount. As ketamine is an anaesthetic, is that psychoactive? Sorry I don't know much about these things.

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  • Administrator

Yes, anything that acts on the nervous system is psychoactive.

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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  • Administrator

Yes, you're in a very difficult position.

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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  • 4 weeks later...

I am very very worried about myself.

I have chronic, severe headaches and autonomic issues that came from dosulpein withdrawl. I never realised this was what I was in. I was on it for chronic pain, came off too quick, toes went blue. Tried to get myself better with detox. Feet went bluer, chronic autonomic issues worsened. Went in wheelchair. Tried 40 mg nortriptyline. Mood was ok but pain still very bad. Got out of wheelchair, spent two months having a life of sorts, came of nortriptyline pretty slowly, still had head sweats, anxiety, panicking.

Had botox injections to try and help pain. The trauma of the injections and resulting poisoning (feet are now purple) means my head and face and neck are in so much pain constantly. E erythema is too bright and loud.

I have even considered restarting the dosulpein at a small dose but as soon as I take something I get electrical jolts and now I can't tell if it's stress or the actual drug. My feet get bluer though.

I KNOW any stress full situation males me more ill. But the pain is all encompassing. One short walk to the end of the road results in horrific pain for days. I am anxious, crying, hugging my partner all the time, desperate....

Is restarting the drug the right or wrong thing to do? I have no life and it's getting worse daily. I have a great support in my partner but that is it.

Doctors are not taking me seriously as they see I'm in a wheelchair and have depression and that's it.

I need to heal myself but I have no idea how to do it. I was on a ton of supplements that didn't seem to help.

My CFS/lyme doctor says I'm holding my neck Strangely (it's off kilter because of the pain) and my spine us very flat. The more insult I have to my body, the ill er I'm getting.

Doss anyone think a reintroduction would help? Or have any ideas? I did try it for a few days a few weeks ago but stopped, AGAIN because I think it's making me worse and won't help. Antidepressant s certain ly seem to 'activate' me more than other drugs.

Please help, I'm really desperate.

Sorry for this post......

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Sorry to hear of your pain, and send you get well wishes from Japan, Jolene.

 

I'm sorry that I cannot help you - as I am more of a 'patient' member of this forum, but i'm sure somebody will be along to help you before too long.

 

Perhaps listening to something positive will help you until help comes along.

 

Louise Hay is one of my favourites http://www.youtube.com/watch?v=mwvSLjoTjoI

Jan 2004 - 2008 25-50mg of Zoloft. 2008 - 2011 - Effexor ( sorry, forgot dosage)
March 2011 2 week taper and stop all meds.June 2011 start etizolum (3mg per day ) + mirtazapine 15mg
Sep. 2011 increase mirtazapine to 30mg per day , start cimbalta 20mg
2012 increase cymbalta to 40mg. Etizolam to 4-5 mg + add 5mg ambien
Aug 2012. Taper off ADs over 2 months. Stop. Taking 1mg etizolam and 5 mg ambien
May 2013. Start mirtapine 15 mg & cymbalta 20mg. Increase etizolum to 4-5mg
Jan 2014 double ADs.March 2014. Start 15mg of Valium to Stop alcohol . 2-3mg etizolum. Same ADs.
2weeks later stop etizolam and Valium . Stop ambien.

Currently I take 2 x 20mg cymbalta in the morning.

0.5mg of lorazepam 3 times a day - occasionally 5mg of Valium when I have an exceptionally bad night at home. April 22 take 1 epizolam.
2 x 15mg of mirtazapine in the evening.
Roserem 8mg sleeping tablet for one week. April 19 take Zopiclone instead. 20th half ambien (no sleep) April 21st Roserem. April22 half roserem.

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  • Administrator

I don't know what to suggest, Jolene. After 3 years, reinstatement of dosulpein would be an unpredictable experiment. With your hypersensitivities, any psychiatric drug might cause worse problems.

 

Have you tried acupuncture or osteopathy?

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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Yes I've done all those things. I am pretty much having a nervous breakdown self harming with darker thoughts because of my headaches and pain. I don't know whether ssomething like neurontin slowly introduced would be better than an AD. Our reintroduction of dosulpein very slowly.. I am not a doctor and don't know how these things work . :-(( I don't know what is a stress response and what is real anymore. I try one dose, freak out and then stop.... I don't ever get that sleepy feeling from meds anymore but maybe that is just me.

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  • Administrator

Can you see Dr. David Healy in North Wales http://survivingantidepressants.org/index.php?/topic/988-recommended-doctors-therapists-or-clinics/page-4#entry56135

 

He recognizes pain symptoms caused by psychiatric drug withdrawal.

 

Also see this doctor list http://survivingantidepressants.org/index.php?/topic/988-recommended-doctors-therapists-or-clinics/

 

(I do NOT think Dr. Lefever would be appropriate for you.)

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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Jolene, I will throw this out just since it's hard to know how to help you. It seems like very severe oxidative stress may be the cause of the pain in fibromyalgia (I know there are many other worthy theories as well). You might try eating lots and lots of veggies and lots of fruits. I read today that watercress is one of the best for antioxidants. I was diagnosed with "regular" fibro, nothing like your experience...nothing helps me more than an all-natural, grain- and dairy-free diet, high veggie diet. Not that I stay on it like I should, heavy sigh. I have just started studying some of the stuff in the resources section at mensahmedical.com. Don't know if that would give you ideas. This is probably of no help, but I just want you to know I wish I could be of help. Also, I found the ebook CFS Unravelled helpful (some think fibro and CFS are virtually the same thing).

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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Meimeiquest, I have been on a pale, good fats, no grain, meat, veggie, egg and fruit diet for the past year. Apart from losing a few pounds it did nothing for my pain. Since I had the botox injections it has gone out of the window a bit and I am eating some rice and buckwheat again. I am going between eating a lot of salt and fat and not wanting to eat be ause of the severity of the pain. Crying all the time wears you out too :-( I am glad your diet has helped you though xx

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