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

April 28, 2013

You are strong, You are amazing, You are in a wave but have seen the light, You are supportive, you are kind and you will get through this, why because you are Barb. One day you will look back on all this and appreciate what you have learned. Hang in there Barb, you have seen good days and will again.

May 6, 2013

Yes, Barb, hang in there. This too shall pass. Eventually, and after testing your limits maybe, but you must believe it will pass. I believe in will!

I posted in another thread about the correlation between GI health and autoimmune conditions, I don't know if you saw that. Have you ever had a metametrix GI profile. If I were you, I would definitely get one. You may discover important information to help your doctors and yourself.

best,

Alex

May 7, 2013

Hi Barb, thinking of you. I wish you knew how much you've inspired me since I've known you here. You're so strong and so compassionate in spite of your suffering. Thank you for being you, even when it sucks to be, because my world is better with you in it.

May 7, 2013

Barb, so sorry you're in a bad one at the moment, I am too. A while back there were even thoughts of a possible return to work part-time, was feeling that much improvement. It's all caved in again, but I KNOW we will both get back there and be smiling once more! Praying for you, for it to lift, to be well again. Keep thinking of your windows, you are astoundingly strong and are gonna do this. Tons of hugs. Xxxxx

May 7, 2013

Thanks everyone. Again. You truly are my lifeline.

Still in a negative place / wave... tough to imagine ever seeing a window again, but trying to hold onto the hope and knowledge that it happened before.

I finally got my bad tooth pulled yesterday. Went under anesthesia and all went fine. I'm relieved that my vitals were good: BP 120/85 and HR 70bpm. The hypotension and bradycardia seem to be stabilizing without the hydrocortisone and fludrocortisone prescribed by my endocrinologist. I dont know if I'm doing the right thing by not taking them, but this one indicator is encouraging.

Alex, thank you for the suggestion of Metametrix testing. I wasn't familiar with it. I don't havethe strength to look for any additional diagnoses and treatments at the moment although I wouldn't be surprised if something would be found. Frankly, I'm afraid of all doctors now. I have not been to an appointment (aside from dentist) for several months, last year, I believe. My docs have been refilling my few scripts by phone.

You are all very special people!

May 7, 2013

Thanks everyone. Again. You truly are my lifeline.

Still in a negative place / wave... tough to imagine ever seeing a window again, but trying to hold onto the hope and knowledge that it happened before.

I finally got my bad tooth pulled yesterday. Went under anesthesia and all went fine. I'm relieved that my vitals were good: BP 120/85 and HR 70bpm. The hypotension and bradycardia seem to be stabilizing without the hydrocortisone and fludrocortisone prescribed by my endocrinologist. I dont know if I'm doing the right thing by not taking them, but this one indicator is encouraging.

I understand being in a tough place emotionally/psychologically/neurologically and I send you good energy to maintain during this wave. It too shall pass.

Congrats on just making it through the tooth extraction.

Alex, thank you for the suggestion of Metametrix testing. I wasn't familiar with it. I don't havethe strength to look for any additional diagnoses and treatments at the moment although I wouldn't be surprised if something would be found. Frankly, I'm afraid of all doctors now. I have not been to an appointment (aside from dentist) for several months, last year, I believe. My docs have been refilling my few scripts by phone.

I totally understand.

You are all very special people!

You too Barb!!!

love,

Alex

May 7, 2013

Just getting my scripts every month is so f**** stressful!!!!!! My psychiatrist was very liberal in prescribing / quantities. Wrote Klonopin 2mg. 1-2 /day prn even though I only took 1mg qhs for bruxism. Put 6 refills on each script and gave me new one on each visit every month or 2. I burned my bridges with him and current doc writes exactly 15 pills/month. Pharmacies don't carry brand Klonopin, so I end up calling and waiting every month because brand not always available from warehouse. Additionally, if I travel, they can only transfer script 1 time and then it is void, can't transfer back to home pharmacy.

This stress is too much. I dont know what I'm fighting for any longer.

Just venting.

May 7, 2013

Barb getting scripts filled period is a headache. Can you ask him to write it out for a larger amount? Or is that a no-no. It's tough when they are not liberal.

Do you mean that you cannot take generic K?

Your feeling better window shall return. Now that you had that tooth taken out you may feel better. A bad tooth can make a big difference in how your body reacts to it.

You can vent as much as you need to.....that's why we are here

May 8, 2013

Barb,

I'm sorry you're under so much stress. If I can help, let me know. I can always lend a sympathetic ear. Hope things get better soon!

May 8, 2013

My stress tolerance / resilience is zero. Neck pain for the last few weeks ~ probably from the bad tooth ~ puts me over the edge. Currently visiting husband's family... his mother is in end stages of cancer although she still has more energy and lifeforce than I have on a good day. Went to their Chiropractic last week and xrays showed that my neck is comparable to my mother-in-law's (85yo - degenerative joint disease). Not news...I've had this chronic neck and head pain since 1993. But to be compared to an 85yo when I'm 50, that's new.

Chronic pain is so EXHAUSTING and tweaks my (already negative) thinking. My vertebrae have almost fused together on their own.

And my own family stuff is always hovering in the background ~ I try not to mention because there's nothing I can do to change it.

Desperately need something positive to focus on.

Thanks for the support.

May 8, 2013

Barb, just reading that you had anaesthetic at dentist and were fine. What type did you have, was it just a local one, do you know? Keeping my fingers crossed for you to start feeling better now, surely the wave must be coming to an end, really hope so. Lots of love. Xxxx

May 8, 2013

Barb, just reading that you had anaesthetic at dentist and were fine. What type did you have, was it just a local one, do you know? Keeping my fingers crossed for you to start feeling better now, surely the wave must be coming to an end, really hope so. Lots of love. Xxxx

Thanks, Fizz.

I was put to sleep with IV sedation/ anesthesia containing Versed, Propofol, fentanyl. I should have said that I didn't have any immediate or obvious problems. It may be impacting my mood somewhat.

May 9, 2013

Okay Barb, hope today is better for you, its really rough at my end too. Xxxxxx

May 12, 2013

Went to an 80s rock concert last night and feel like i was hit by a Mack truck today. No alcohol involved. Feels like the last time I'll try that for awhile.

Other updates for week:

1) got a light period for the first time in about 4 years (almost 51), complete with cramps. My endocrinologist said this might happen due to ovaries being resurrected with estrogen. I'm not sure how I feel about this..

2) my blood pressure and heartrate have been running normal (high side for me) which is a dramatic change from last summer when I was hospitalized for bradycardia (HR in 30s) and low blood pressure (80/50 ish) that was eventually attributed to endocrine failure (adrenals, thyroid) and corticosteroids prescribed. I'm encouraged that my vitals are normalizing without the hydrocortisone and fludrocortisone since I reacted badly to the HC (AM dread worsened). Weight is also up 10lbs to healthier range. Having to pay attention to what I eat after many years of being spoiled.

I'm not denying I have medical issues but exercising caution in jumping into additional drug therapies. Im only 2 years post Pristiq and feel that my body is still adapting to absence of drug.

3) the prescription issues with Klonopin have been worked out for 3 months. Prescribing MDs can't keep up with changing pharmacy and insurance rules. My former psychiatrist Rx'd in a way that I always had extra on hand. My pain doc Rx's for exactly amount I take. My own paranoia about asking for more and being perceived as "drug seeker". He'd probably be fine with it. Insurance ok'd 3 month supply so I don't have to stress about it for awhile.

Thanks everyone for your ongoing support.

May 12, 2013

Serves you right for listening to eighties rock music

Only joking. Hugs. Xxxxxx

May 13, 2013

Hi Barb,

Thank you for posting on my thread, yes you are right about how the intensity of w/d symptoms is worse than anything before.

Last week I read through your entire thread, before I joined the site, you've been through a lot, and still are.

I'm also 51, not working and have a constant background of subtle stress from dysfunctional family (parents/sister etc) In some ways, your husband even reminds me of my ex-husband.

I hope you recover from the rock concert soon

Petu.

May 15, 2013

Returned home after 2 weeks visiting inlaws in Vegas. Immediately went into a bad spiral when home. FEAR of being at home and isolated again.

May 16, 2013

Barb that feeling of being home and isolated is not an 'out there, no reason fear'. You've been thru so much and most of it in your own home.

I wish we all lived closer to be able to go out for Coffee. Did you have a good time with your in-laws? If so, can you plan another trip? Something to look forward to.

For about two weeks I have been sick. I thought it was EBV but it turned into a virus that is going around Southern Florida. Sinus Infection and Laryngitis (big time).

I re-scheduled my clients for next week so I could rest up this week. It is virtually impossible to sleep with my daughter living here. She very inconsiderate.

Lo and behold today I was bored. And that feeling that you are talking about came up. I went to an Al-anon meeting, visited my mother and took the dogs to the Vet and I am bored and consumed (at times) by the same feeling.

Alot has happened to all of us, and there are residual effects.

Have you ever thought about starting a support group for women/men on AD's? You would be good at it.

Hugs

May 17, 2013

Barb I really hope you feel better soon and give yourself alot of credit for the things that you do ,do. You have taken some huge steps ((hugs))

Sending you good vibes through these tougher times.

Mr. A

May 17, 2013

Barb that feeling of being home and isolated is not an 'out there, no reason fear'. You've been thru so much and most of it in your own home.

I wish we all lived closer to be able to go out for Coffee. Did you have a good time with your in-laws? If so, can you plan another trip? Something to look forward to.

For about two weeks I have been sick. I thought it was EBV but it turned into a virus that is going around Southern Florida. Sinus Infection and Laryngitis (big time).

I re-scheduled my clients for next week so I could rest up this week. It is virtually impossible to sleep with my daughter living here. She very inconsiderate.

Lo and behold today I was bored. And that feeling that you are talking about came up. I went to an Al-anon meeting, visited my mother and took the dogs to the Vet and I am bored and consumed (at times) by the same feeling.

Alot has happened to all of us, and there are residual effects.

Have you ever thought about starting a support group for women/men on AD's? You would be good at it.

Hugs

I agree about the support group...

May 22, 2013

Thanks for your encouragement. Still having a rough time. Most of my life was gone before this withdrawal hell of the last 2 years and now I see no future whatsoever. Just emptiness.

If I survive this, I feel I will need to get as far as possible away from anything involving psychology, psychiatry, drugs, or healthcare. I could never support people on these drugs that have ruined my life. It tears me apart each time I learn of another friend or their kids on these drugs. I was never helped by them, not even for a short period.

May 22, 2013

WHEN you survive this you can do just that, but remember what Gia said

''love comes back, joy comes back, forgiveness comes back''

and also a very wise woman keeps on reminding me of something that I will remind you of now

you cannot trust your assessment of the past, present or future at this time.

thinking of you. x

May 22, 2013

barbara, also, do you have a pet? it may be helpful for you, something to keep you company and something to focus on

May 24, 2013

Thank you for coming by my thread and writing such nice comments. After many yrs still trying to figure out the road I took and what I need to learn from it.

May 24, 2013

I know you understand, Aria. Thank you for your contributions and encouragement to me and the group.

I try very hard to believe that I'm going to improve, but the reality ~ as you know ~ is that some of us do suffer permanent damage from the drugs and/or from withdrawing. My symptoms got much worse after tapering and seem to be similar to many others' but I also have the knowledge that my MRI showed vascular brain lesions which may get worse. I wish I could undo getting that MRI ~ unknow that piece of information and go on believing that I will get better.

Had I known that withdrawing would unleash or destabilize whatever damage has happened over the course of the last 20 years, I would never have risked it. I believe it's important to acknowledge the risks of tapering / discontinuing a drug especially after prolonged exposure. We criticize the MDs who did not warn us of the dangers of taking the drugs. I think we have a responsibility to inform others of the dangers of discontinuing. "Informed consent" of sorts.

May 25, 2013

If I survive this, I feel I will need to get as far as possible away from anything involving psychology, psychiatry, drugs, or healthcare. I could never support people on these drugs that have ruined my life. It tears me apart each time I learn of another friend or their kids on these drugs. I was never helped by them, not even for a short period.

Except for this forum I know of very few who are NOT on some sort of psyche drug. I wasn't helped either and thinking eventually one of these pills will work (my pdoc kept reinforcing this ridiculous idea).

Yes, I do understand, Barb. Who would had thought we'd be permanently damaged by drugs so readily distributed??

"Psyche drugs...the drugs that keeps on giving long after it's discontinued".

May 25, 2013

barb, I would like to remind you that many people inculding shea carney from the other site had brain scans that showed white spots....and went onto recover

May 25, 2013

barb, I would like to remind you that many people inculding shea carney from the other site had brain scans that showed white spots....and went onto recover

Thank you, Iggy. That helps a lot. I'm in a very dark place right now.

May 25, 2013

Barb so sorry to read that you are in a dark place right now. Is it physical? The tiredness?

Or is it a combination of mind and body? This may sound hokey, but I keep receiving affirmations on FB from Louise Hay, and I really like them. She has a book "Healing Your Life". I think that is the name of it. Maybe listening to a book might help lift thoughts.

I need to do this myself...You have a lot of friends here whom you can talk to all the time.

Use us to journal to and about.

I remember Shea Carney and didn't know about her CT scans. I do remember she recovered.

Consider yourself hugged alot today from me

May 25, 2013

It's EMPTINESS. All I can think about is dying to end this empty existence. These drugs killed every spark or interest I had. It is worse since withdrawing, but started as soon as I went on the drugs 20 years ago. Possibly due to my preexisting endocrine conditions, the drugs leached every life interest and energy over 20 years. I read about so many having sexual dysfunction from the drugs and wonder what it must be like to have ever had FUNCTION. I'll never know that one life pleasure that most people take for granted. Probably TMI..

vacillating between complete apathy and rage.

Have been talking to a girlfriend from years ago. She's been on disability due to depression for about 20 years. She's doing quite well now and I asked her what she's on. Zoloft plus Effexor plus Abilify. That's ALOT of drug, I thought. But she's very functional and is trying to support me. She knows my feelings about these drugs but we've reached an unspoken truce. However, I couldn't help but recognize how much more functional and happy she is.

Thanks, everyone.

May 25, 2013

she may be functional and happy now, but give it a few years, and then see how she is when she has to come off them, I know of at LEAST 3 people wans, who had the same results from CT scans, even Ritas daughter and many many others from PP.

You WILL recover, like I said, you canno trust your perceptions of anything right now, you simply cannot...have you read matt sametts mad in america blog? I recommed you have a good read...

hang in there bravely my sweet friend. xx

May 25, 2013

Iggy,

I appreciate your input, but i dont understand why you feel that everyone will have to come off of these drugs at some point, especially after being functional on them for 20+ years. I suspect that we who discontinue are a very small percentage of all people on there drugs and that most stay on for life (likely a shortened lifespan). Most people I know are on one or more drugs and have no thoughts of changing or stopping.

I'm very against the widespread use of these drugs, but agree with the doctors who say it may be more dangerous to discontinue than live with the dangers of staying on.

May 25, 2013

Oh I agree, and I wish I had never stopped, but I thought everyone pooped in the end anyway...

May 25, 2013

Iggy,

I appreciate your input, but i dont understand why you feel that everyone will have to come off of these drugs at some point, especially after being functional on them for 20+ years. I suspect that we who discontinue are a very small percentage of all people on there drugs and that most stay on for life (likely a shortened lifespan). Most people I know are on one or more drugs and have no thoughts of changing or stopping.

I'm very against the widespread use of these drugs, but agree with the doctors who say it may be more dangerous to discontinue than live with the dangers of staying on.

I definitely agree that meds can and do help some people. My concern is that patients aren't being told by the health-care professionals about the likely dangers of 1. being on them, 2. trying to get off of them.

I certainly wasn't told by my trusted doctor about either case.

It was AFTER I began having difficulties WITH the meds that I had to investigate what was going on.

My hope would be that any person contemplating beginning a treatment that includes pharmaceuticals would be informed of ALL of the possibilities beforehand.

We should have all of the information up front so that WE can best choose OUR path.

Miss Barbara:

Like you, I too live in sunny So-Cal. It's a beautiful day today. Let's get off of this stupid computer and step outside and enjoy it, if only for a moment. I am going to listen to the birds sing and think of you and send every one of us all of the So-Cal love I can muster!

-Salted

May 25, 2013

Barb, we will recover, we will. It just takes such a bloody long time. Some days are lighter, some are desperate. I'm so sad that you're feeling this way at the moment. How many times have I mourned the fact that I didn't just keep on taking the Prozac every day, I live in a different world now. Have got to let go of this regret though. It is going to get better, we do know that, even for the very worst cases recovery came. Please hold onto that. Lots and lots of love. Xxxxxxxxxx

May 26, 2013

Hey Barb

So sorry to hear you are in a dark place ... I wish you were closer, cuz I'd run right over and give you a hug. A big ole hug

I think that the drugs helped me in the beginning, but if you read the beginning of my thread you'll see that everything I was on eventually quit working. Things didn't get better for me until I moved to Colorado. Don't know why - it could have something to do with the elevation above sea level. It wasn't perfect, but I didn't seem to have the deep lows that I had experienced before when I lived at sea level.

I think that years of ADs and benzos have disrupted my endocrine system and it has taken a bit of work to try and get things back in line. Alternative treatments have been very important to my healing, but it takes a lot of effort to track down providers that are willing to support alternative treatments.

It is hard and you aren't getting any support at home. I worry about you ... I'm sending you lots of love and light and hoping that you get a window of relief.

Karma

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

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