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Barbarannamated: pain<-->depression...chicken<-->egg


Barbarannamated

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Hi Barb

 

Just a quicki to see how you are.

 

It was good you went out with your dad to see your aunt, wasn't it? So will your dad be going back now on his own as your sisters back?

 

Debbiejo,

 

Thanks for your message.

 

Sister is a drug addict completely dependent on my 85yo father. She's afraid when he goes anywhere and creates an emergency situation so he runs back. Very unhealthy.

 

I suppose he'll be going back soon.

 

B

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

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Hey Barb

 

What do you think about going back to PA to stay with your Dad and Step Mom?

 

Would they be able to help you out...Could you rest there and see MD's in the area?

 

I have a friend who has RA and she had a bad episode with being abruptly pulled off her AD.

She was admitted to a Psych unit for a few days and from there Medicare paid for her to stay in an Assisted Living Facility for recuperation from the episode which compromised her RA.

 

Do you qualify for Medicare (how old are you?) Do you qualify for Medicaid? With you and your husband not working you may be able to apply for Medicaid. There are health care plans for Medicaid.

 

When you see Endo, ask her about upping the dose of Thyroid and Steroid, you may need more of a boost. Those meds have to be fine tuned a few times before hitting the correct dose.

 

We love you to pieces :wub:

 

PS are you still taking Trazadone? It's very sedating. And...when did you finish AD's? The last on was Prestiq???

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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No step mom involved. Just dad and sister. My mom just died a few weeks ago. Family situation is probably more stressful than I can deal with right now. This is the first my dad and i have spoken in over a year. Havent spoken to sister in longer than that.

 

I've been on Medicare due to disability (chronic pain) since age 39. Not sure what they'd cover.

 

Thanks everyone. Feeling pretty hopeless and alone right now. Very ugly family situation - just me, dad, and drug addict sister. http://survivingantidepressants.org/index.php?/topic/1294-toxic-family/page__fromsearch__1

Ill be ok.

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

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  • Administrator

Oh Barb :( . I'm so sorry about your family situation. You are between no support in your husband and a difficult situation with your father and sister. Is there anyone back in PA who could provide you with emotional support? I guess there will always be the conflict with your sister ... but maybe if there is a cousin or something who could advocate for you ???

 

Has it gotten any better with your father realizing that you really are sick? Is there enough there for you to feel supported?

 

Barb, I just wish there was something I could do to make you feel less alone and more supported. You know that your friends here on the forum support you. I think we feel the love across the distance through this forum, but as I type this it just doesn't feel like it is enough.

 

Sending you love, light, healing energy, courage and strength.

 

Posted Image

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; 12/17 - 75mg; 8/17 - 45 mg; 10/16 40 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 ; 10/16 40mg;

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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Just realized ive taken 2x dose of trazodone the past few nites. Extremely tired. I'm sure that's not helping my ability to think or make decisions. And still no Vyvanse, which I CTd when unable to get.

 

Father thinks I'm all better because I've gotten out of bed and went to see aunt the other day. He's going back to PA - my sister is scared being alone. The bar is set pretty low in our family.

 

When he first came the other day, he looked around at our life/living situation and asked "WHY are you living this way??" Tiny old house, unfinished projects, vehicles that wont start (sun kills them). I know how both of us being drugged for 20 years has led to this apathetic and isolated existence. I lost my career 11 years ago (disability). Husband hasclost many jobs. We lost a house and several hundred thousand dollars cash (not just on paper). The horses and dogs are our family. It's a mess, yes. But it is my family and difficult to leave.

 

I'm staying in CA for now. Husband is stepping up a bit.

 

Will write more later. Thank you, everyone.

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

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I'm staying in CA for now. Husband is stepping up a bit.

 

Will write more later. Thank you, everyone.

 

Glad to hear you did not take up your father's offer.. he can't take of himself, let alone tend to your needs, and you were bound to 'disappoint' to no good effect.

As always, LISTEN TO YOUR BODY! A proud supporter of the 10% (or slower) rule.

 

Requip - 3/16 ZERO  Total time on 25 years.

 

Lyrica: 8/15 ZERO Total time on 7 or 8 yrs.

BENZO FREE 10/13 (started tapering 7/10)  Total time on 25 years.

 

Read my intro thread here, and check the about me section.  "No matter how cynical you get, it's almost impossible to keep up." Lily Tomlin

 

 

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I'm staying in CA for now. Husband is stepping up a bit.

Will write more later. Thank you, everyone.

 

Glad to hear you did not take up your father's offer.. he can't take of himself, let alone tend to your needs, and you were bound to 'disappoint' to no good effect.

 

THANK YOU, Schuyler. This has been incredibly stressful and my tiny inner voice is saying "don't go!".

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

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THANK YOU, Schuyler. This has been incredibly stressful and my tiny inner voice is saying "don't go!".

 

Hmmm, maybe have a talk with your inner voice and ask why it gave your Dad so much credibility from the getgo??

As always, LISTEN TO YOUR BODY! A proud supporter of the 10% (or slower) rule.

 

Requip - 3/16 ZERO  Total time on 25 years.

 

Lyrica: 8/15 ZERO Total time on 7 or 8 yrs.

BENZO FREE 10/13 (started tapering 7/10)  Total time on 25 years.

 

Read my intro thread here, and check the about me section.  "No matter how cynical you get, it's almost impossible to keep up." Lily Tomlin

 

 

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Barb let me apologize for the mix up with your Mom. So sorry.

 

Trazadone is a real downer. Very sedating and an energy stealer. I know getting off of it has to be done by tapering. My daughter took it years ago. She tapered in a short time and was fine.

 

I don't know what you can handle in terms of tapering.

 

When is your Endo appointment? Your thyroid and steroids may need to be adjusted for more energy.

 

Are you eating?????? Please eat well, it may help with energy.

 

As for your Dad, trust your instincts.

 

Barb you can post here 100 times a day, and someone will always be around to connect with you, so use us all day long for support. Know that you are loved and cared about. Thru it all you have been a powerhouse of support for us (me). Really want to reciprocate ;)

 

Do you watch TV? If so, watch something like the Olympics or comedies to perk you up.

 

Hugs...will check in on you later.

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

Link to comment

 

THANK YOU, Schuyler. This has been incredibly stressful and my tiny inner voice is saying "don't go!".

 

Hmmm, maybe have a talk with your inner voice and ask why it gave your Dad so much credibility from the getgo??

 

GOOD question. It all goes back to the family looking good on the surface...people saying they wish my dad was theirs, etc. Deceptive appearances that I'm seeing through only now.

 

Life sure is weird.

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

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Made mistake of answering phone today. Sister spiraling out of control, begging me to come home. Said she "couldnt go talk to mom because dad put her in a f*** mausoleum!" She goes to cemetery and talks to grandmother and other relatives at their headstones. And Bible says "once they're dead, they can't hear". I assured her she can talk to mom and others from anywhere.

 

HOW did she escape psychiatry (aside from depression, Paxil) and i got years of polypharmacy????

 

Rhetorical question! Just documenting for the movie of the week "The Normal Family" :o

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

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  • Administrator

Thinking of you, Barb.

 

Horses and dogs make good family in my book, albeit the horses can't call 911, but they will be there for you when you need emotional support :rolleyes: .

 

BTW - I agree with listening to that small voice inside.

 

Posted Image

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; 12/17 - 75mg; 8/17 - 45 mg; 10/16 40 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 ; 10/16 40mg;

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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Got in for Brain MRI this morning at a different hospital with a new 3Tesla machine. Some confusion w/coding for "vasculitis with neurologic symptoms" - no Medicare code. Endocrinologist responded immediately to my email (before office hours) Told me to use "cerebritis" code. He should have results tomorrow.

 

Just to clarify for anyone reading... this is related to neuro symptoms of Addison's and Schmidt's Syndrome.

 

I did Google "cerebritis" and it occurs with systemic lupus erythematosis (SLE) which I suspect I had, possibly induced by Zoloft years ago (1997 FANA pattern test positive, never mentioned to me). Showed endocrinologist those labs on last visit. He copied for his files and gently said we'll focus on what we have to treat now. I suspect he's trying to keep me focused on the now, and not things that may have been missed in past.

 

I need to talk to him about what he's thinking/suspecting/prognosis. Husband acted better while dad was here, but he's back to his old self. Dad and sister are convinced I'm fine (aka "you're just depressed") and just need to be with them. Per my sister "there's nothing wrong with your brain...it's everyone else's brain that f*** up!" Well, relatively speaking...

 

I'm looking into medical centers that have good neuroendocrine reputations and Ronald McDonald/family House facilities. I stayed in Family House in Pittsburgh when mom was in hospital. There were patients there who needed to be close to medical care but didn't need intensive 24/7 care. That's just a thought I'm keeping on the back burner. The medical care in my hometown is frightening. One internist who claims to practice endocrinology. I'm looking at Cleveland Clinic, Mayo, Hopkins, Houston. I have friends in those areas but not anyone I would feel comfortable asking alot of. I just need to get my footing.

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

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Hey Barb,

 

How are you? Did you get the results from MRI? I don't understand what your illness means, I feel dumb about it. I am very concerned. I do know lupus is a painful condition but don't understand a lot.

 

My mind is not as sharp as it once was. I graduated college in 2000, with honors. It's sad what these drugs to to us, both mentally and physically.

 

Thinking of you and sending healing energy and lots of love and hugs.

 

T

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How are you? Did you get the results from MRI? I don't understand what your illness means, I feel dumb about it. I am very concerned. I do know lupus is a painful condition but don't understand a lot.

My mind is not as sharp as it once was. I graduated college in 2000, with honors. It's sad what these drugs to to us, both mentally and physically.

 

Tezza,

I have several things going on and I dont fully understand either including genetic mutations. When autoimmunity is involved, it's a domino effect in the body. Many medical problems were missed over the years I was treated for "depression". My doctor is trying to assess and treat what we have now, piecing the puzzle together.

 

The main diagnoses are Autoimmune Polyendocrine Deficiency Syndrome 2 which includes adrenal failure/Addison's Disease and Hashimoto's thyroiditis. Related are Premature ovarian failure and non alcohol fatty liver disease. The lupus test was positive in 1997. It was likely induced by Zoloft, the first SSRI I was on. It was never addtessed and I dont have the classic skin symptoms. I dont know if lupus resolves or lays dormant and flares.

 

I have not gotten results of MRI yet. I'm not certain if that will show anything conclusive or just give a benchmark of current cerebrovascular condition. With the various conditions I have, blood flow in the brain is compromised.

 

My doc is understandably trying to keep me focused on what is treatable in the present and not thinking about what was missed over the years. The labwork is clear as day showing highly abnormal results that were never mentioned to me. It's a fluke that I still had my records. I suspect he also doesn't want to get pulled into a lawsuit. When I first learned of all of this, I flew into a rage and threatened legal action against my pdoc who is a patient and friend of my endocrinologist. It's convoluted :(

 

Someday, when I'm stronger, I hope to understand it all and be able to help others avoid the medical errors that happened to me as I got worse over the years.

 

I had a brief but distinct window of hope this morning! It was like sunshine momentarily breaking through a dark, heavy layer of black smoke that's engulfed me. It didnt last, but did give me a taste of what it can be like. The steroid munchies are kicking in. :o

 

I will update my sig line as soon as I get on a real computer.

 

Thank you, Tezza. You are a very special friend.

 

Love, B

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

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So glad you had some sunshine moments which lifted your spirits a bit. This probably means your medications are kicking in :)

 

It sounds like you are in good hands with this Endo. If you have the munchies ~ eat. Please eat. You lost alot of weight and eating may give you some more energy. What about Ensure?

 

Keep us posted.....your a great lady B)

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

Link to comment
  • Administrator

Hi Barb,

 

A window of sunshine sounds fantastic based on where you have been. I agree with Nikki that perhaps you are responding to the new meds.

 

I'm sorry I haven't been around ... I am taking tomorrow off which meant I had to get all of my work done in four days instead of five days ... somehow I am missing the benefit of time off :unsure: .

 

Anyway, I always check your thread even if I am busy and don't have time to catch up with everyone - you are a very special friend to me and I always want you to feel supported by me.

 

Love ya

Posted Image

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; 12/17 - 75mg; 8/17 - 45 mg; 10/16 40 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 ; 10/16 40mg;

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 Barb... I didn't know Lupus could be caused by antidepressants! How do they test for it? I know someone who was just diagnosed with it, and she doesn't have the skin thing either. Just a bunch of weird symptoms like many of us.

 

Sometimes I fantasize about a group of House-like doctors going to work to get to the bottom of what is going on with me. It sounds like you're really getting to the bottom of this!

'94-'08 On/off ADs. Mostly Zoloft & Wellbutrin, but also Prozac, Celexa, Effexor, etc.
6/08 quit Z & W after tapering, awful anxiety 3 mos. later, reinstated.
11/10 CTed. Severe anxiety 3 mos. later & @ 8 mos. much worse (set off by metronidazole). Anxiety, depression, anhedonia, DP, DR, dizziness, severe insomnia, high serum AM cortisol, flu-like feelings, muscle discomfort.
9/11-9/12 Waves and windows of recovery.
10/12 Awful relapse, DP/DR. Hydrocortisone?
11/12 Improved fairly quickly even though relapse was one of worst waves ever.

1/13 Best I've ever felt.

3/13 A bit of a relapse... then faster and shorter waves and windows.

4/14 Have to watch out for triggers, but feel completely normal about 80% of the time.

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Hi Barb... I didn't know Lupus could be caused by antidepressants! How do they test for it? I know someone who was just diagnosed with it, and she doesn't have the skin thing either. Just a bunch of weird symptoms like many of us.

 

Nadia,

There is quite a body of research about SSRIs inducing autoimmune disorders, including lupus. It is hard to prove at this point, but the dates of labs and onset of symptoms point to the posdibility. Here is one article:

http://survivingantidepressants.org/index.php?/topic/2552-rao-2006-sertraline-induced-systemic-lupus-erythematosis/

 

I also recently posted about SSRIs triggering autoimmunity. Immune system boosting is being studied and sometimes touted as a positive effect of SSRIs, but the autoantibodies/autoimmunity seems a grave concern. It seems that many of us have autoimmune disorders

 

http://survivingantidepressants.org/index.php?/topic/2758-ssri-antidepressants-may-also-effect-human-immune-system/page__pid__28974#entry28974

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

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Wow... that does not surprise me in the least. It makes sense that it's all connected.

 

We are such a delicately-balanced house of cards. Messing with one can send the whole thing toppling over.

 

I know someone who just started on ADs (didn't tell me as she knows of my struggle).... I have tried to warn people away from them, but I'm immediately suspect. I don't think anybody REALLY believes me that the stuff I'm going through is related to being on them for so long. Especially because I had issues to start with (even if those were different from the ones I have now).

 

*Sigh*

 

Nayeli

'94-'08 On/off ADs. Mostly Zoloft & Wellbutrin, but also Prozac, Celexa, Effexor, etc.
6/08 quit Z & W after tapering, awful anxiety 3 mos. later, reinstated.
11/10 CTed. Severe anxiety 3 mos. later & @ 8 mos. much worse (set off by metronidazole). Anxiety, depression, anhedonia, DP, DR, dizziness, severe insomnia, high serum AM cortisol, flu-like feelings, muscle discomfort.
9/11-9/12 Waves and windows of recovery.
10/12 Awful relapse, DP/DR. Hydrocortisone?
11/12 Improved fairly quickly even though relapse was one of worst waves ever.

1/13 Best I've ever felt.

3/13 A bit of a relapse... then faster and shorter waves and windows.

4/14 Have to watch out for triggers, but feel completely normal about 80% of the time.

Link to comment

Barb... have you heard of LDN (low dose naltrexone)?

 

I first heard about it from a friend who's daughter has Ulcerative Colitis, an autoimmune disease my niece has. I've heard it can help for a lot of other autoimmune diseases. It is such an innocuous treatment that I would be willing to try it for my own symptoms. I don't know why, but I have a gut feeling it could help, since I read it has helped for people with CFS and Fibro. Apparently, Lupus is also on the list:

 

http://www.lowdosenaltrexone.org/index.htm#What_diseases_has_it_been_useful_for

 

Of course, it also makes me skeptical that this could be a some sort of cure-all, but I've been curious about this for my dad's and nieces' auto-immune problems for years. If I could find a doctor here that would be willing and able to prescribe this (it requires a compounding pharmacy), I would go for it.

'94-'08 On/off ADs. Mostly Zoloft & Wellbutrin, but also Prozac, Celexa, Effexor, etc.
6/08 quit Z & W after tapering, awful anxiety 3 mos. later, reinstated.
11/10 CTed. Severe anxiety 3 mos. later & @ 8 mos. much worse (set off by metronidazole). Anxiety, depression, anhedonia, DP, DR, dizziness, severe insomnia, high serum AM cortisol, flu-like feelings, muscle discomfort.
9/11-9/12 Waves and windows of recovery.
10/12 Awful relapse, DP/DR. Hydrocortisone?
11/12 Improved fairly quickly even though relapse was one of worst waves ever.

1/13 Best I've ever felt.

3/13 A bit of a relapse... then faster and shorter waves and windows.

4/14 Have to watch out for triggers, but feel completely normal about 80% of the time.

Link to comment

Barb... have you heard of LDN (low dose naltrexone)?

 

I first heard about it from a friend who's daughter has Ulcerative Colitis, an autoimmune disease my niece has. I've heard it can help for a lot of other autoimmune diseases. It is such an innocuous treatment that I would be willing to try it for my own symptoms. I don't know why, but I have a gut feeling it could help, since I read it has helped for people with CFS and Fibro. Apparently, Lupus is also on the list:

http://www.lowdosenaltrexone.org/index.htm#What_diseases_has_it_been_useful_for

Of course, it also makes me skeptical that this could be a some sort of cure-all, but I've been curious about this for my dad's and nieces' auto-immune problems for years. If I could find a doctor here that would be willing and able to prescribe this (it requires a compounding pharmacy), I would go for it.

 

Nadia,

 

I've read of LDN only here on the group, but I am going to run it by my endocrinologist. I will read up on it first as I don't understand the mechanism or theory. In light of what we've been through, I have no doubt that something "too simple" (or off patent/not profitable) would be kept from the "mainstream" literature. I suppose I've become a conspiracy theorist. ;)

 

I'm so sad to hear of your recent struggles, Nadia. You express your angst so 'beautifully' that I'm reminded of many great writers who produced their most profound works in the lowest times. I often go to www.brainyquotes.com for "company" and encouragement when I'm feeling low. Some of the great philosohers and writers made great sense of their despair. I've also gotten back on Facebook, not to communicate with old friends (still difficult due to the jealousy and comparisons I never did prior to withdrawal), but to browse pics from various pages of travel, animals, sarcasm, history, romance.. I'm not very mobile right now and that provides some distraction for me. It brings up a very full range of emotions, also.

 

I find that focusing on my symptoms (journaling) is detrimental, especially because I dont have the option of reinstating at this point. I am keeping track of diurnal rhythms since beginning cortisol. I have a powerful swing in the early evening - ive broken down in spontaneous tears the last few evenings. No apparent cause, same time of evening (coincidentally, the same time I had an intense hot flash several months ago). Sometimes it is pure intrigue at the powerful neuroendocrine system that keeps me going. :o.

 

I have family drama playing out in all corners right now: husband is very emotional (mostly weepy) which I know is due to his too-fast taper of Effexor in the spring. I never saw him cry for 18 years, but the Olympics brought on waterworks. It's awkward because we've both been drugged for our entire marriage. His mother is in end stages of cancer and family in unprepared financial chaos. Hubby is the doctor, so everyone assumes he has $$ when, in reality, we are scraping by because he's lost so much work over the years and I lost my career, a house, etc. My sister is spinning out pf control in Pennsylvania and father is going along with. I fear that will end very ugly.

 

Im rambling now. Seems I cant find a decent channel in my head right now. Trying distraction any way I can.

 

I love you all more than I can say!

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

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Barb I read the link from Nadia, and I would like to read more about it. Sounds terrific.

 

Regarding your family issues....is there any way you can detach from it all? Sometimes tuning people out is the best survival technique.

 

How are you feeling? Have you had an improvement in energy levels......

 

Hugs

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

Link to comment

Barb I read the link from Nadia, and I would like to read more about it. Sounds terrific.

 

Regarding your family issues....is there any way you can detach from it all? Sometimes tuning people out is the best survival technique.

 

How are you feeling? Have you had an improvement in energy levels......

 

Regarding family... I go back and forth hourvto hour, literally. I feel that I must stay away for my own health. Then, I feel I want to be there for my dad or sister because they are my only only family. It's incredibly painful.

 

I felt ok today. Mornings are rough, afternoons pick up a bit, then evenings have a weird surge of emotion. I have not been able to get Vyvanse but hydrocodone keeps me from going to the very dark place. Not ideal, but in survival mode right now.

 

I just realized im stressing about eating everyday. Just not a good situation.

 

I havent gotten results of MRI yet.

 

Thanks Nikki.

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

Link to comment

Got MRI results. Doctor emailed to my husband since he is an MD. Essentially, chronic vascular changes. Not a surprise with my preexisting genetics. Also, serotonin interferes with cerebral blood flow (my input).

 

"Scattered T2/FLAIR white matter hyperintensities which are nonspecific but can represent chronic microangiopathic change sequelae of vasculitis."

 

Vasculitis and cerebritis are similar.

 

Not unexpected but a bit sobering to see in black and white. Have appointment with endocrinologist tomorrow to discuss further. I suspect he will refer to neurologist.

 

Will post more as I know it.

 

Just to clarify...I have multiple endocrine conditions including Addison's Disease. This is not solely due to SSRIs and/or withdrawal.

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

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I had a dream last night, one of the first that I remember in a long time. My mother made a brief appearance. It was good.

 

SYNOPSIS: I was living alone and some friends (unknown) were waiting for me to pack to leave where I lived and move with them. I was having a very hard time packing because my place was a mess with piles of stuff everywhere. Too chaotic to find anything, like on one of those hoarder shows (im not at all a hoarder but am messy).

 

I was stressing and friends were pressuring me. I finally told them to go without me, id catch up on my own.

 

Went back into my place and my mother was sitting very calmly among a pile of clothes, partially hidden. I didnt realize she had been there. She acted completely unfazed by the disaster of my life, as if saying "it's ok". Very unusual because she normally voiced an opinion (negative) or would start to "fix" me, my hair, my place, etc. It felt distinctly like two adults in my dream.

 

I woke up with heart pounding because I was still stressed about trying to pack and leave with the people. Aside from that, I felt a sense of peace.

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

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  • Administrator

Hey Barb

 

Maybe it was a sign that your mother is fine and is at peace and she wanted you to know that she is with you during this difficult time ... she no longer has the need to fix you ... and she left you with a sense of peace as a gift.

 

Love you,

Posted Image

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; 12/17 - 75mg; 8/17 - 45 mg; 10/16 40 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 ; 10/16 40mg;

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

Link to comment

Hi Barb,

 

Thanks for your words. I'm sorry to hear about family drama/MRI/health challenges. Especially all mixed up together. You are so together considering everything, don't you think? An admiral job. I salute you.

 

N.

'94-'08 On/off ADs. Mostly Zoloft & Wellbutrin, but also Prozac, Celexa, Effexor, etc.
6/08 quit Z & W after tapering, awful anxiety 3 mos. later, reinstated.
11/10 CTed. Severe anxiety 3 mos. later & @ 8 mos. much worse (set off by metronidazole). Anxiety, depression, anhedonia, DP, DR, dizziness, severe insomnia, high serum AM cortisol, flu-like feelings, muscle discomfort.
9/11-9/12 Waves and windows of recovery.
10/12 Awful relapse, DP/DR. Hydrocortisone?
11/12 Improved fairly quickly even though relapse was one of worst waves ever.

1/13 Best I've ever felt.

3/13 A bit of a relapse... then faster and shorter waves and windows.

4/14 Have to watch out for triggers, but feel completely normal about 80% of the time.

Link to comment

You woke up from the dream and felt a sense of peace.....that was a good dream. Your mother is okay and maybe she didn't do anything because she knows you will be okay too.

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

Link to comment

Phone appt with endocrinologist yesterday to review MRI results.

 

Definite brain damage in white matter shown by FLAIR hyperintensities. Looks like damage started awhile back (chronic). Most likely due to antibodies attacking brain. But could be due to multiple reasons. Treatment is same: cortisonel to replace cortisol and suppress overactive immune system, thyroid and estrogen. He agreed to double my estrogen dose because that has seemed to have best effect on pain and mood to slight degree.

Treatment is aimed at slowing cognitive decline secondary to autoimmune disease.

 

I'll post more when thinling more clearly.

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

Link to comment
  • Administrator

Barb

 

I'm stunned. Please tell us more when you can.

Sending you healing energy, love and light,

Posted Image

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; 12/17 - 75mg; 8/17 - 45 mg; 10/16 40 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 ; 10/16 40mg;

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

Link to comment

Ouch... I hope you weren't hit too hard emotionally by this. Lots of hugs, Barb. I hope treatment provides some respite.

'94-'08 On/off ADs. Mostly Zoloft & Wellbutrin, but also Prozac, Celexa, Effexor, etc.
6/08 quit Z & W after tapering, awful anxiety 3 mos. later, reinstated.
11/10 CTed. Severe anxiety 3 mos. later & @ 8 mos. much worse (set off by metronidazole). Anxiety, depression, anhedonia, DP, DR, dizziness, severe insomnia, high serum AM cortisol, flu-like feelings, muscle discomfort.
9/11-9/12 Waves and windows of recovery.
10/12 Awful relapse, DP/DR. Hydrocortisone?
11/12 Improved fairly quickly even though relapse was one of worst waves ever.

1/13 Best I've ever felt.

3/13 A bit of a relapse... then faster and shorter waves and windows.

4/14 Have to watch out for triggers, but feel completely normal about 80% of the time.

Link to comment

Barb

 

I'm stunned. Please tell us more when you can.

Karma

 

I dont fully understand much more than the antibodies and autoimmune process are attacking the white matter and nerves showing as "mild, scattered T2/FLAIR hyperintensities, which are nonspecific, but can represent chronic microangiopathic change sequela of vasculitis."

 

Scattered as opposed to focused in one lobe or area of brain.

 

I pulled up this article which refers to it. http://www.sciencedaily.com/releases/2012/07/120731111418.htm

 

Another possible source. http://www.tchain.com/otoneurology/disorders/autoimmune/aibd.html

 

I contacted the Brain Institute at Cleveland Clinic in Las Vegas where I know (used to work with in previous life) the Director. He said my case is too complex, out of their focus areas. Hope you are able to find help.. no referral or suggestions. I was astounded. I only asked for a consult, gave my history and got that response. My thinking is that with confirmed neurological/brain damage it would be prudent to have a neurologist on my case even though I completely trust my endocrinologist.

 

I mentioned that I had been treated by psychiatry but got no help for depression.

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

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Barabarannamated,

 

I'm sorry to hear of all your med suffering. I hope you are able to get on a path that works for you all the way to being able to get off these terrible medications that cause more suffering than when we first started. Just saying Hi, and letting you know I read your intro and am hoping for the best for you. Take care...

 

Kian

Klonopin 21 years (did an 8 month taper off of 2mg's then had to reinstate @ 7 months out)Current Dose is 1.5mg daily.

Dilantin 19 years @ 300mg (did a 6 month taper...had a few doses since then but off it now)Off Since 1.5.2012

Remeron Started 3/30/2012. Helped me for 2 months, not so sure what it is doing to me now. Still take 15mg @ night

 

**Currently not stable and trying to "stabilize".

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  • Administrator

 

Barb

 

I'm stunned. Please tell us more when you can.

Karma

 

I dont fully understand much more than the antibodies and autoimmune process are attacking the white matter and nerves showing as "mild, scattered T2/FLAIR hyperintensities, which are nonspecific, but can represent chronic microangiopathic change sequela of vasculitis."

 

Scattered as opposed to focused in one lobe or area of brain.

 

I pulled up this article which refers to it. http://www.sciencedaily.com/releases/2012/07/120731111418.htm

 

Another possible source. http://www.tchain.com/otoneurology/disorders/autoimmune/aibd.html

 

I contacted the Brain Institute at Cleveland Clinic in Las Vegas where I know (used to work with in previous life) the Director. He said my case is too complex, out of their focus areas. Hope you are able to find help.. no referral or suggestions. I was astounded. I only asked for a consult, gave my history and got that response. My thinking is that with confirmed neurological/brain damage it would be prudent to have a neurologist on my case even though I completely trust my endocrinologist.

 

I mentioned that I had been treated by psychiatry but got no help for depression.

 

That hits close to home since I have Celiac Disease and Hashimoto's :blink: But it appears that this condition with the brain is rather rare. I'm still just amazed that you literally have brain damage - do I understand that correctly?

 

I wouldn't be too surprised about the reaction from the Director of the Brain Institute ... how well did you know him? Perhaps his reaction is due to being protective of his facility - you know, he might not want to "get involved." However, I looked up that facility online and it looks like this would be exactly the kind of thing they would work with ... I don't know, maybe it is just at his level that he didn't have any answers.

 

Given the current diagnosis it probably makes sense to get a Neurologist on your case to work with your Endocrinologist. But keep your guard up just as you did while you were in the hospital. We know the party-line is to throw more drugs as these kind of problems and with the exception of the cortef you are taking to help your adrenals, more drugs are probably not the answer.

 

Thinking of your Barb Posted Image

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; 12/17 - 75mg; 8/17 - 45 mg; 10/16 40 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 ; 10/16 40mg;

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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That hits close to home since I have Celiac Disease and Hashimoto's :blink: But it appears that this condition with the brain is rather rare. I'm still just amazed that you literally have brain damage - do I understand that correctly?

 

I wouldn't be too surprised about the reaction from the Director of the Brain Institute ... howecer well did you know him? Perhaps his reaction is due to being protective of his facility - you know, he might not want to "get involved." However, I looked up that facility online and it looks like this would be exactly the kind of thing they would work with ... I don't know, maybe it is just at his level that he didn't have any answers.

 

Given the current diagnosis it probably makes sense to get a Neurologist on your case to work with your Endocrinologist. But keep your guard up just as you did while you were in the hospital. We know the party-line is to throw more drugs as these kind of problems and with the exception of the cortef you are taking to help your adrenals, more drugs are probably not the answer.

 

Yes, that is correct, Karma. The MRI is showing damage to white matter of brain. The way he explained it is that the FLAIRS show areas where the white matter (he referred to as "insulation") has been destroyed and sends up a FLAIR on the image. He said that the

FLAIRS did not show any particular pattern as they would in MS. The symptoms of this damage are depression, cognition problems, pain... anything associated with nerve tissue.

 

He's being cautious about how he's presenting it to me after I reacted badly when he first told me about the dangers of SSRIs (everything we talk about here).

 

I admit that I am piecing together my history with the help of labwork I have that was never discussed with me, especially the positive lupus tests in 1997 (FANA and CPK 3x normal). I have no idea why a FANA PATTERN was run except that it may have been part of a panel of tests. Lupus was never mentioned to me. He ordered the MRI immediately after seeing a copy of the lab showing FANA PATTERN. Ordered for "vasculitis with neurologic symptoms" but then changed to "cerebritis" when vasculitis did not have billing code. Cerebritis appears to occur with lupus: "lupus cerebritis".. Very few references in literature about cerebritis apart from lupus.

 

Another link to info on autoimmune brain. http://www.aarda.org/infocus_article.php?ID=55

 

The Behavioral Neurologist at CC is leading researcher in dementia, especially Alzheimer's. He writes the texts. I only knew him professionally and when I wore a very different hat. I suspect that there are politics playing in... not wanting to get involved in long line of medical errors/liability. This is all speculation.

I plan to ask this doc at CC if he will review MRI or suggest a direction. It seems that I would at least be a decent teaching case.

 

My doc did NOT paint a gloom and doom picture for me. My sense is that we caught this early and can slow it. Dementia is very strong in my family. I am the first one to find the underlying autoimmune process going on. My mother had fluctuating cognition for many years. She had autoimmune markers, but no doctors put the picture together.

 

EDIT: AUTOIMMUNE NEUROLOGY at MAYO CLINIC. (Dr. Pittock)

 

http://mayoresearch.mayo.edu/mayo/research/neurology/neuroimmunology.cfm

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

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