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

December 18, 2013

OK Barb,

I know this will sound crazy, but if you and your dad are re-connecting, do you think he might be willing to spend some big money on you? In the little community where I grew up, several people are going to a clinic in Ft. Collins, CO. It is run by 2 brothers, one was (reportedly) the head doc at NASA at one time and he decided there had to be a better way to practice medicine. They are a mix of traditional and holistic treatments. Two of my sisters drive hours to see the second dr., Dr. Bill, and they totally swear by him. One sister says he is a total fraud (she hasn't been). Their specialty, of sorts, is diagnosing weird stuff. There are, to me, two major cons: They use, among other things, applied kinesiology, which I just can't get my head around and when I had it done by two chiros, they came up with totally different assessments, and they are really expensive, take no insurance. The last I knew, the initial visit was $1500. That was a complete review of all medical records and phone interview before the patient comes (theoretically followed by hours of research) and a several hours long initial assessment. I guess people fly in from all over the country to see them. I've never been and any of this could be inaccurate. Anyway, their website is www.trilifehealth.com. And I do realize this is a very weird idea but you are worth it!

December 18, 2013

I'm so sorry Barbs, I wish I could do something to ease this for you.

Mamma Hugs XX

December 19, 2013

Barb,

I am so sorry for all the difficulties you have been through. And to not have support from your husband because he doens't think you are trying hard enough. I wish I could give you a hug.

I understand the fear in seeing doctors particularly when you know your previous records are there. I think everyone on this board can relate.

Hang in there.

CS

December 19, 2013

Thanks again, everyone. Meimei, thanks for the info on the docs in Colorado. I would be open to that under different circumstances or in the past, prior to years of mistreatment. Presently, I can't summon the motivation to follow through with any treatments or new evals. I'm plain old TIRED of life and have no fight or will left. The bad health, pain and disability (much from psych drugs) has been the focus of my life for 20 years. I'm not suicidal, I'm just ready to move on to whatever lies beyond this life. I have no responsibilities, no family, job, nobody relying on me. I've been doing all i can to pass the time since being unable to work for the past decade +. I know others have gone thru the feelings of life being too long. Maybe I'll recover from this place, but it's hard to envision it right now. My father was telling me how his life was dedicated to caring for my mom and now he's ready to join my mother. I can relate to that emptiness because it started so young for me.

This is the hardest holiday season since this whole mess started.

December 19, 2013

I'm sorry you're having a hard time coping. The holidays are hard for a lot of people. They are bittersweet to me so I try to make the best of things.

I hope you feel better real soon!

{{{HUGS}}}

December 19, 2013

Barb you mentioned Wellbutrin....are you currently taking it and does it help at all? It is pretty stimulating and may be okay for you. Trazadone can cause tiredness.

When you are out of the house and doing something do you feel better, like a bit more energized and refocusing on other things. I am so sorry I don't know what else to suggest.

I remember years back a psych telling me that he prescribed wellbutrin for CFS patients. (google it) I understand about the ativan....xanax and propanolol can cause a rebounding depression for me.

Your father is telling you how he really feels, and it happens to most married couples when one passes. If you can just keep that as his thoughts and not dwell on it, it may be more helpful for you.

Barb the holidays are going to pass....the idea of being festive and joyous with tons of people running around spreading joy will pass.

You are so much smarter than the doctors. I wish you were here, or I there and I would give you a big hug, lots of chocolate and a gift. Thank you for helping me out with Ozzy's passing this week and all the other times I have needed a friend....

Many hugs Please send me your email so we can invite you to the group.

December 19, 2013

Thanks Nikki and Tezza. Having a very hard time this week since my dad left on Sunday. I was supposed to go back east for Christmas, but my prescriptions were delayed yet again and I couldn't leave. Still thinking about going, though.

Nikki, I understand well how my dad feels....ready to move on from this life because he no longer has a reason to live...just passing time alone, watching Tv,, waiting to die. All of his friends and relatives have passed. He, my mom, and I are the very youngest of all of our families. I told him that I feel a similar way, not because of my mom, but because I feel no reason for me to be here, emptiness. Life has been so long and empty and i'm ready for it to be over.

I'm not on Wellbutrin, but my endocrinologist feels it's the lesser of evils compared to anything serotonergic or neuroleptics (I'm sure he wouldn't prescribe those).

When I get out, I do feel slightly better. I doubt people would guess how I feel most of the time. It's strange... I can be out having a fine time with a friend or getting a facial or massage, then I'm suddenly hit with the thought that I'm ready for life to be over.

December 19, 2013

I'm just really sorry it's so hard.

December 20, 2013

Had dinner with 2 horse friends (humans who own horses) on Tuesday night. It was pleasant, but each time one talked about their job, spouse job, families, I felt a strong wave of grief over things that I've lost or will never have. I suppose I'm facing my mortality.

I eventually got very anxious and had to leave abruptly.

It's also very dreary today. Heavy rain / no sun for one day can hit me hard.

Thanks again for everyone's support.

December 20, 2013

Hi Barb. Thinking of you. This is a hard time of year for so many of us.

I really relate to what you say, about how hearing about other peoples' lives can trigger so much grief about our own.

I think it's still really important to make yourself spend time with other people and connect with them as much as you can.

Gentle hugs to you.

December 20, 2013

If I were you, I would not add Wellbutrin to the mix.

December 20, 2013

If I were you, I would not add Wellbutrin to the mix.

I know you are right, Alto. Thank you for taking the time to write and reinforce it in my mind. You help so many.

December 21, 2013

Hang in there, Barb. You'll get through this.

December 22, 2013

Barb you said that you do get out and feel better....can you get out more? I do understand how anxiety builds when people talk about things that we may lack or desire in our lives. I think that happens alot. We are genuinely happy for them, but it does bring on a certain feeling of loss.

Maybe what you are feeling is loss. I am so sorry this is troubling you.

Lots of Hugs

December 22, 2013

Had dinner with 2 horse friends (humans who own horses) on Tuesday night. It was pleasant, but each time one talked about their job, spouse job, families, I felt a strong wave of grief over things that I've lost or will never have. I suppose I'm facing my mortality.I eventually got very anxious and had to leave abruptly.It's also very dreary today. Heavy rain / no sun for one day can hit me hard.Thanks again for everyone's support.

I would not add any more drugs either. I see you were drugged as long as I 18 years and have only been off drugs 2 years. Grief has been a huge part of this for me not only for the things I have lost the thing I ruined during mania... ect. Grief was huge it takes work sometimes can be grueling my heart goes out to you. I tend to avoid a lot of things that make me feel worse especially early on when I really could not handle it well.

It takes time to accept that this is how life is now. To tell the truth I don't think I have quite accepted it and never will as there is an angry part of me that is determined to get to the bottom of this and get better. Tho I do see the years slipping away mortality has been on my mind plenty too.

I think the first 2-4 years are still difficult and it gets a bit old by then and your grow accustom to it. Your nervous system will heal a bit better by then too. While some say go out more I went out less.. it helped me not having my nose rubbed in all the things I was missing could not have or do... ect.

I am curious about the various hormones you on.... I hope they are helping rather than hurting.

Give it some more time be kind to yourself.

December 22, 2013

I had a hysterectomy about 18-months ago and feel like I have aged years. I know people have mentioned hormones, for me the changes/loss of them was drastically noticed. I "feel" older than my years. I understand the grief of realizing the opportunities that have been missed or lost. It hurts. It messes with my thinking.

I'm sorry that you are in a dreary place physically and emotionally. You've lifted my spirits and helped me feel that I wasn't alone. I am hoping to return the sentiment. You are not alone.

January 3, 2014

Suffering terribly with emotional pain. Unbearable. Unable to eat or sleep. Akathisia. Hate being alone but cant force myself to be with people either. Holidays were brutal.

Wake with strong thoughts of death and dying that occupy my mind almost all the time now. I never felt this bad ever, prior to drugs or during.

I really need help. Would low cortisol / Addison's cause this? I need help.

January 3, 2014

Suffering terribly with emotional pain. Unbearable. Unable to eat or sleep. Akathisia. Hate being alone but cant force myself to be with people either. Holidays were brutal.Wake with strong thoughts of death and dying that occupy my mind almost all the time now. I never felt this bad ever, prior to drugs or during.I really need help. Would low cortisol / Addison's cause this? I need help.

I would like to help you the only time I ever felt like that was in effexor withdrawal it lasted an extended time. It was touch and go getting thru it some times I was waiting for the next minute to pass it was so bad. If you can distract yourself it may help and keep in mind this is brain chemistry... I spent a good part of that time in dim light listening to the sounds of the ocean on head phones. Try to think of nothing if distractions are painful... you do not say if your overly energetic or can't seem to move..

I don't know if that helps at all but I do wish you the best and am here is you think of something further to add or have any specific questions. I don't know if this is Addison's or not but I do know always thinking you have a major disorder is what withdrawal was like for me. The symptoms were so extreme I thought there is no way a person could be this ill and not be dying so I resigned myself to die and waited for the defining symptom to come... and guess what it never came. Not yet.

I am not sure how the drugs your on may be affecting you now or how they have affected withdrawal from effexors cousin prestiq what I do know is I spent a good part of my withdrawal in the state your in right now. For me this was part of cold turkey from Effexor. Treatment is whatever works to get you thru the time or was for me. My heart goes out to you. If this is some type of fluke withdrawal hanging on it will pass in time. I suggest you stay with at least one person when possible or have somebody in the house if you can. It was not possible for me and I have to say I needed my alone time too. wishing you well

January 3, 2014

I don't know how to help you with regards to cortisol or Addison's. Its hard because w/d seems to mimic every illness out there. What I can say is that I have found your support and feedback valuable. I look forward to reading what you have to say to me and to others. I know that it sucks to want to die. It is a place that I unfortunately visit quite often. It is dark and lonely and for me, it physically feels cold. It is all around yucky but it doesn't last. Sometimes I visit there more often. Sometimes I stay there a little longer. But the feelings have never lasted for long without a break, not before pdrugs and not since. The only exception being when I was a teen and circumstances were very different and even that didn't last forever - I'm still here.

I know that you are strong Barb. I know you've been fighting this for a very long time and I am guessing that you are feeling pretty exhausted. I believe that you will come thru this. The holidays were brutal for you. They have only barely passed. Give yourself the time to feel the pain and grief from all that happened. Give yourself permission to get thru this and catch your breath. Absolutely explore any medical concerns but remember that you are stronger than this or any disease. You will triumph. And in the mean time try to be very nice to the little Barb living inside. I bet she's pretty scared too.

January 3, 2014

Thank you, btdt and MM. I A appreciate your support.

I have been diagnosed with Addison's but was unable to tolerate the treatment.

January 3, 2014

Suffering terribly with emotional pain. Unbearable. Unable to eat or sleep. Akathisia. Hate being alone but cant force myself to be with people either. Holidays were brutal.Wake with strong thoughts of death and dying that occupy my mind almost all the time now. I never felt this bad ever, prior to drugs or during.I really need help. Would low cortisol / Addison's cause this? I need help.

Big time hugs to you Barb. When you say you can't tolerate the treatement for Addison's, what you do mean? I am sure I am asking you to repeat yourself so please forgive me for this.

January 3, 2014

Suffering terribly with emotional pain. Unbearable. Unable to eat or sleep. Akathisia. Hate being alone but cant force myself to be with people either. Holidays were brutal.Wake with strong thoughts of death and dying that occupy my mind almost all the time now. I never felt this bad ever, prior to drugs or during.I really need help. Would low cortisol / Addison's cause this? I need help.
Big time hugs to you Barb. When you say you can't tolerate the treatement for Addison's, what you do mean? I am sure I am asking you to repeat yourself so please forgive me for this.

Hydrocortisone seemed to make the cortisol awakenings much worse. I'm trying ADR natural adrenal supplement now. Had a horrible night with restless legs/akathisia. I don't know how those of you who don't sleep can function.

January 3, 2014

Just documenting: got period on Christmas night. After being "menopausal" for a few years, it's coming every 4 months or so. Not sure if these hormones are helping or hurting.

January 3, 2014

Do you get whacking PMS? My periods are like that thanks to nature, and it's not a pretty picture.

January 3, 2014

Barbs I am so sorry that you are feeling so bad. My neice has Addisons and before she started treatment she was very ill

and did have some of the symptoms you are experiencing. She couldn't eat, didn't sleep and was pitifully thin.She was

depressed and doctors were ready to admit her to a psych hospital when test after test came back clear,

then one doctor decided on one last test because mum kept insisting she was ill and not just depressed. The test

confirmed Addisons. She went onto steroid tablets and didn't take them because she didn't like the side effects but

not sure what those were.

She didn't take care of herself, drank too much alcohol (huge amounts) and didn't eat anything but crisps (chips)

because she craved salt. Eventually she had a psychotic episode after a binge and was admitted but not to psych because it was

recognised that it was the Addisons. After that scare she started to look after herself. Now she is fine, eats, sleeps and takes

care of herself and takes the steroids regularly, the side effects went away eventually.

I don't know if there is any other treatment, she wasn't offered anything else.

She carries a steroid injection pen at all times in case of crisis.

I'm really sorry you have all this going on and wish I could make it better for you. Big hugs on their way for you. XXX

January 3, 2014

Thank you, btdt and MM. I A appreciate your support.I have been diagnosed with Addison's but was unable to tolerate the treatment.

Been dx with many things I can't tolerate the treatment of and or will not event try the treatment of as once I look up the drug decide to take my chances doing what I can without further drugs I have already tried a lot of drugs. I am not suggesting this what you should do but often if you look there will be foods diet phsyio.. other ways of getting some sort of handle on the situation through lifestyle changes. I try hard to work with my body as it stands now and not to hurt it any further... I have this unsupportable faith in my body that it will heal. I may be wrong but I do not want to make my life worse in the mean time if it is not healing with my support at least I am not suffering as much by avoiding the drugs and the side effects. I know this is a rouge way of being and behaving and know too my doctors think me a bit whacko nothing has changed there... I hope you are better... soon.

January 3, 2014

Barbs I just want to say that I am not saying you should be taking the steroids!

I'm sorry it looks that way, I didn't mean to come across that way and apologise if I did.

My niece didn't look after herself and wouldn't have looked at changing her lifestyle.

She takes better care of herself but still drinks and eats junk food! She needs the

steroids because she wouldn't change her lifestyle enough to manage the illness.

I was thinking about what I had written and realised it could come across as me

suggesting that you need the steroids. I'm not always very good at explaining things.

Btdt is right, there will be other ways of managing things without drugs and I know

you would rather do that than suffer by taking more drugs.

January 3, 2014

MammaP,

Your explanation was very good. I might try them again as I'm doing so poorly. I dont have enough energy to eat much of any food, so completely changing my lifestyle right now is unrealistic.

Thank you.

January 4, 2014

Hi Barb

I'm sorry I haven't been around to chime in on your thread. I do think it could be related to Addison's and I don't think any of the doctors who have tried to treat you have given you proper treatment, i.e. they have given you too low of a dose. This is my opinion based on my own experience, observations of others dealing with adrenal insufficiency, and lots of research.

Look up Dr. William McK. Jefferies and Safe Uses of Cortisol. You may not choose to buy his book, but there are other items on the internet with excerpts from Dr. Jefferies' work and at least one other doctor who will come up in that search.

Feel free to PM me with additional questions.

I'm sorry the holidays are so difficult for you. I know how you feel, though I doubt I've felt it as badly as you've experienced this year. Please hang in there. Life really is worth living.

Love ya,

Karma

January 4, 2014

MammaP,Your explanation was very good. I might try them again as I'm doing so poorly. I dont have enough energy to eat much of any food, so completely changing my lifestyle right now is unrealistic.Thank you.

If you can't eat be sure to get your electrolytes ... I did this by way of infant formul pedialyte as I could not tolerate the adult version. What of the medications could they be contributing factors I know I am coming in late and have not followed your journey from the beginning sorry if I am appearing rude and or idiotic I could see how it may look that way.

January 4, 2014

Do you get whacking PMS? My periods are like that thanks to nature, and it's not a pretty picture.

I rarely got PMS prior to perimenopause, I think because my ovaries have been hypofunctioning all my life so the changes in hormond levels weren't as noticeable. It got worse in 40s and lasted 2 weeks of the month (normal in perimenopause from what ive read). Period ceased altogether for a few years and returned during early withdrawal and moreso with estrogen therapy. Infertility runs in my family and I suspect early ovarian failure is the likely cause in all. Mother tried for 11 years to have my older sister. I'm 3 years younger and still hope to learn I'm adopted.

. My genepool SUCKS!

I think I do get PMS now although every day is torture with withdrawal, so it's hard to distinguish.

January 4, 2014

The whole thing sucks. I know nothing about Addison's disease, but I wonder if you reverse-tapered up the medicine might be easier to start?

January 10, 2014

Barb, This is random, but I posted an article about parasites in off-topic. The word lupus comes up. No one can accuse me of staying inside the box. Hope things are getting a bit easier!

January 10, 2014

Hi Barb

I'm sorry I haven't been around to chime in on your thread. I do think it could be related to Addison's and I don't think any of the doctors who have tried to treat you have given you proper treatment, i.e. they have given you too low of a dose. This is my opinion based on my own experience, observations of others dealing with adrenal insufficiency, and lots of research.

Look up Dr. William McK. Jefferies and Safe Uses of Cortisol. You may not choose to buy his book, but there are other items on the internet with excerpts from Dr. Jefferies' work and at least one other doctor who will come up in that search.

Feel free to PM me with additional questions.

I'm sorry the holidays are so difficult for you. I know how you feel, though I doubt I've felt it as badly as you've experienced this year. Please hang in there. Life really is worth living.

Love ya,

Karma

I don't know if your interested and this person never came back to the site to say how it turned out... what was said relating to addisons ...

ive been on low dose cortisol replacement for 9 mths now, i am now weaning off of it very slowly, and it did help me with some of my low-cortisol symptoms (which are like low thyroid symptoms). i cant stay on it long term as i need to give chance try have my hpa axis work, and get my adrenals to work again, but it hasnt fixed everything. i am still low cort, and suspect i will be long-term. i have been diagnosed by 2 docs as "chronic fatigue" due to the low cort

I had a lot of questions they were not answered if you want to see the rest it is here[/color]

http://www.topix.com/forum/drug/effexor/TCH1UF3DOCU5HN9SV

post 13 is where you will find the above.. I am checking for further posts from this person as there were times I had not computer and maybe there were updates I missed.

The only other post I can find from this person is here:

http://www.topix.com/forum/drug/effexor/T5SV9PFCJ4UDE320R

post #9

"Hey all,

I know everybody's body seems to respond differently, but in my experience, my metabolism slowed RIGHT down - weight gain, low body temp, constipation, dry skin, hair loss, lethargy - it's all related to a slow metabolism.

every doc told me it was 'stress' or 'in my head' but i started taking my temp, and we run at around 98.6, and my temp has consistently been around 94, 95, 96 - so i knew that there was no way it was in my head. think about it - at 100, it's a fever, so why wouldn't 2 degrees lower than normal also cause you to be ill? not everybody that has impaired metabolism will run low temp, but it is the top sign of it.

i found that the best thing to do is go somewhere, where they will look at every single thing. a regular doc won't do this. In Canada, I went to a Functional Medicine clinic, where they have MDs and integrative medicine. They test your hormones, vitamin/mineral profile, test for heavy metal toxicity, do a slew of blood tests, everything possible to see where the problem is coming from.

In my case, this is what happened. Effexor can cause cortisol levels to rise; a disturbance in cortisol can interfere with thyroid function (producing reverse T3, instead of real T3, the thyroid hormone) and even after cortisol levels fall back down, the body can be stuck in this mode (making Reverse T3).

In Canada, RT3 is no longer tested, but it can still done in the U.S. I would recommend having thyroid antibodies tested, along with RT3 if you still feel you might have a thyroid problem. Doctors will tell you that you are crazy, but the 2 things that they are not informed about are:

1) Adrenal fatigue, and[/color]

2) Low thyroid function/slowed metabolism

In my case, I had an Adrenal Stress Index done, to test my insulin, cortisol, DHEA and immune function (24 hr saliva test). it's said to be more accurate than a blood test. My cortisol level was found to be too low, along with low insulin and low immune function (secretory igA), but low cortisol causes these other two things to be low.

Adrenal fatigue (low cortisol) causes similar symptoms to low thyroid, and often people will have both- an adrenal fatigue AND low thyroid function. Adrenal fatigue seems to be common experience by people after they have been on meds like Effexor and go off of them.

Impaired metabolism also seems to be another thing experienced by alot of people on these meds. It may have something to do with the stimulating effect of the meds - its ability to raise cortisol levels.

If you're unsure about this stuff, think about this. High level of cortisol causes blood pressure to rise. What's the #1 side effect of Effexor? Hypertension (high blood pressure).

If you think this might be you, I suggest that you look into it. I spent over a yr feeling like total crap. It turns out I needed some adrenal help and some thyroid help, too after all this.

And low metabolism causes depression and lack of motivation..so fix one problem.. might be able to also fix the other! In my case, it did."

I will try to get an update.

So far I have been unable to get the name of the doctor or medical center he went to or an update so I don't know how it turned out, Thought you may like to see it.

Peace.

wow that copied like crap sorry about that...it did not look like that when I posted it...???

Edited February 23, 2014 by Karma
cleaned up HTML markup in quote

January 10, 2014

Hi Barb

I'm checking up on you. I know that you have had a very rough go at it and hope things are at least finding a more manageable place. You Re thought of often.

January 11, 2014

Btdt,

I sincerely appreciate that you are trying to help by sharing someone's info from another board. In the future, will you please post just a link to the Topix (or other) thread and not include full text in my intro thread? Or, perhaps open a separate topic and notify me.

I'm on serious overload and have to limit my exposure to new info.

Thanks in advance.

Barb

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

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