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

September 26, 2012

Appointment with endocrinologist yesterday morning. I was so despondent, I could barely speak or hold tears back. Never got labwork completed because mornings are so bad and I just can't get out. I probably should not write this now.

He asked questions about what's going on...pain? No. Depression, hopelessness? Yes, I nodded my head. Told him Vyvanse is only thing that ever touched depression previously...serotonergics never effected me in positive way (we'd talked about this previously when he said that SSRIs CAUSE depression). He had no problem prescribing Vyvanse, said they use stimulants for depression in medically ill patients. Medically ill. Said if chemotherapy helps cancer patients, doctors use chemotherapy. I'm not liking these comparisons. I know, intellectually, what is going in, but somehow hearing the words is disturbing. Reality and all.

Then, he went on to say we will be getting regular MRIs to follow the LESIONS in my brain. Brain lesions. YAY. I knew that, too, but somehow "white matter hyperintensities" was more palatable. And these lesions cause cognitive deficits and depression and hopelessness. In other areas of brain, they cause MS and other neurodegenerative diseases.

We talked about my dosage of Cortef, hydrocortisone. It is used to replace adrenal hormone and as an immunosuppressant in higher doses to control the autoimmune disease that is attacking my brain and causing lesions. I knew this, too (thank you, Karma). He said we need to increase the dosage and I said "because we're only treating the adrenal portion and not the autoimmune disease". And he said, "good. We're thinking along the same lines."

So, that's the plan for now.

September 26, 2012

Hey Barb,

I truly hope this disease gets stopped from doing any further damage. You are very intellectual and I pray you remain so and better if possible. I know there is no way to reverse the damage already done but I do think we can exercise our brain. It seems to me you do that constantly with all your research. You have been SO helpful to me. I don't remember one time you ever failed to comfort me when I was in distress. You are a blessing to many and should be blessed in return.

Maybe hopeless is a better way to describe my mood as opposed to depressed. I did a micro taper of Risperdal Monday and think I feel better somewhat. I will know in a few days whether it's a window or the taper.

Hugs and love,

Tezza

September 27, 2012

Hey Barb,

I know it is difficult to face the illness you are dealing with, but it sounds like your endo is willing to support you. The MRIs will help detect the progression of the illness or show that it has been halted. I count it as a good thing that you understand the treatment and that you appear to be aligned on the treatment.

Watch your symptoms and be vigilant - if you have bad side effects contact your endo to see if you can make a change in the treatment.

Hang in there and see how the treatment progresses. As you said to Alex, we're here for you!

Love and light,

Karma

September 27, 2012

Barb is you lowered the Trazadone, it may have caused some more depression/hopelessness?

I bet the increase in the Cortef will help with energy, and if you feel a bit more energized, it can lift your spirits.

I was thinking about my friend who is a retired Neurologist who teaches Mindful Meditation.

He posts alot of material on FB regarding healthy changes in the brain as a result of these practices. The changes can be seen under and MRI.

Google John Kabat Zinn. He is the innovator of this type of meditation an it is used for healing purposes. It targets certain areas of the brain. Check out Amazon.com for his stuff.

We know this won't hurt, it can help and the worst case scenario is that you feel nothing.

I know I've mentioned this before, but in my limited thinking/knowledge I wonder if Gingko would help you. Apparently it increases the blood flow to the brain which can be seen under a CT/MRI.

There are some Yoga postures that do that too.

You poor kid you got beat up from all of this crap over the years. You have a survivor's instinct that is incredibly strong.

Try the natural stuff and see if there is improvement.

Love, Hugs and Cuddles

Nikki

September 27, 2012

Thank you, dear friends!

I'm doing a bit better today after finding some "good trazodone" stashed away. I'm quite surprised at how dramatically the 1 missed dose and 1 week of different generic effected me. FINALLY, after 4 wrong fills of trazodone in 1 week, pharmacy realized specific generic does not come in 100mg which pain doc wrote by mistake (150mg correct) and his staff required I come in for another appointment (75 miles away). NO! My endocrinologist is phoning in new script now. That really should not have been so difficult.

Very low mood, tearful, hopelessless hitting me early evenings in addition to mornings of dread/anger. Took 2 magnesium-buffered aspirin (325mg) last nite and noticed subtle but immediate improvement and calming. May be a fluke, but aspirin does help bloodflow and my condition is cerebrovasculature..

Ginko may also help. Thank you, Nikki.

I had planned to ask Endocrinologist about Neurology consult, but I was too distraught to say more than absolutely necessary. He addressed my concern about following disease state on MRI and addressing autoimmune component. He said there are other immunosuppressants available if Cortef is not controlling. My strength to pursue further info comes and goes. I have to set it aside when I feel myself becoming overwhelmed.

I love you all.

September 27, 2012

Hey Barb,

I'm sorry you're feeling so low. I hope it doesn't last. Thank goodness your Endocrinologist phoned in the correct script for you. 75 miles :angry: im glad they finally got it right!

Hugs and love you my friend,

Tezza

September 28, 2012

Hi- hope you are feeling a bit better this evening. Will keep you in my thoughts!

September 28, 2012

We love you too Barb.

September 30, 2012

Barb please check out the newest post by gevys....there is a post in there that I don't quite understand but it has to do with autoimmune issues....

Nikki

September 30, 2012

Barb please check out the newest post by gevys....there is a post in there that I don't quite understand but it has to do with autoimmune issues....

Nikki

I read through Gevys Intro thread and didn't see anything about autoimmunity and couldn't find any other posts..? Can you post the link to what you saw? Thanks, Nikki.

October 1, 2012

Just documenting..

Extreme dry eyes (barely able to open) and tooth surface pain.

Weather: 104° and 8% humidity

I've always felt healthier in humid climates and now makes sense in light of Sjogrens dx.

Note to self: move out of desert and to humid climate

October 3, 2012

Article about area I moved from (Dana Point) and to (San Bernardino area). I am in a safe rural area, but the statistics are the same.

http://business.time.com/2012/10/02/a-tale-of-two-california-cities/

".. it seems like a place where if you get off track, you might become dehydrated and die."

"Four years on from the financial crisis, half of all mortgages in the county are still underwater and the foreclosure rate is 3.5 times the national average. Unemployment is over 12%.

It’s not about moral rightness. It’s about our economy. Things are very, very bad here.”

October 5, 2012

Reviewing the past few weeks to try to determine when I went downhill. Something feels very different but difficult to describe. I'm not as painfully despondent, but now numb and with less energy than before. Time is passing excruciatingly slowly and I can't spark interest in anything, even momentarily. The Vyvanse helps very slightly but wears off faster than it did in past. That's disturbing because it always helped me before. It has decreased my appetite which is not good.

As I look at posts from yesterday, it feels like they were many days ago and some I barely recognize.

The isolation is scaring me. My husband lives in the home, but we barely exchange words. I havent talked voice to voice with anyone since I went to pick up trazodone over the weekend.

I have to communicate with my endocrinologist and let him know how little support I have and see if he has any thoughts. I know this lack of human interaction can't be good for the white matter degeneration.

Thanks everyone.

October 5, 2012

I love you, Barb! I understand those feelings you're having and empathize.

{{{HUGS}}}

October 5, 2012

I have to get out of this situation. I dont know where I'll go, but I can't stay.

October 5, 2012

Barb!! Hugs and more hugs!! One foot in front of the other... the only thing that is certain is change.

October 5, 2012

Woke today with strong feeling I must RUN FOR MY LIFE. Not typical cortisol morning, but definite flight/survical mode, with intent. It reminds me of when I packed my car and left in July 2011. I drove across country for 4 months. Never should have returned. If I had a car I might have left again today, but I left my car in a parking lot in Nashville last October with every intention of returning there. I think it's still there.

Still trying to figure out when I took a dive. I think the trazodone fiasco with CVS, as much as I bitched about it, gave me a purpose for a week or so...a reason to get outa the house and interact with people and accomplish something. Wow. That is a pathetic editorial on my life.

I have zero real life support. I don't know how long I'm going to last.

October 5, 2012

http://www.sjogrens.org/home/about-sjogrens-syndrome

This is a support group and there is a video to watch. I hope this helps.

Hugs and more Hugs

October 5, 2012

Thanks, Nikki. You're a sweetheart

I hate when I get in this negative, complaining spiral and can't find a good channel in my mind. I try to stay occupied, at least mentally, to distract myself from the negative. But my natural strong curiosity, love of reading and ability to maintain interest has diminished greatly. It requires alot more to stimulate it now.

October 10, 2012

Hi Barb,

Thinking of you....you are missed when you're not around. You are loved by many. I'm so sorry you're having a hard time. I'm hoping and praying you find relief SOON!

{{{hugs}}}

T

October 10, 2012

Hi Barb... in my dreams, you are on your way to Nashville to get your car and off on an adventure. I really related to the urge you describe!

For me today, suddenly again, there is no point to living. Trying not to engage the thought.

Where could you go, what can you do to heal? How can you find support?

Thinking of you...

October 11, 2012

Hi Barb

I'm sorry I've been absent ... my work has been taking over every waking minute :blink: . I just wanted to pop in and give you a Karma hug, .

I wish you had some local support. I pray every day for you to have a more supportive living environment.

You are loved.

Karma

October 12, 2012

Thanks everyone.

I've been having some very bad days. Hopelessness on steroids, literally. My gut is telling me the hydrocortisone is effecting me badly.

As I read others' symptoms, I am asking myself what is withdrawal and what is the whole endocrine/autoimmune disease. There is so much overlap, especially in the "weird, perceptual disturbances" realm. Most disturbing. Both Nadia and Gia used the descriptor "weird" in the past few days and that is the best word for it.

This is from info on CNS Vasculitis and describes the "weird" perceptual stuff, particularly disorientation to environment EVEN AS THEY ARE AWARE OF DISORIENTATION. Does this sound like DP/DR to anyone else? Trying to tease this out.

GENERAL CONFUSION (About 65%)

http://cnsv.memberlodge.org/Default.aspx?pageId=28187#three

"Most people with CNSV experience general confusion, not in terms of thinking per se but in terms of orientation to their environment. For example,they may become disoriented in regard to time, place or person, even as they are aware of that disorientation. They may forget what they were doing or were about to do. When out of the house, they may be confused by activity around them, bright or moving lights and/or loud noise. In addition, there may be memory problems or even dementia or personality changes. (See also: mental changes, dysphasia, aphasia and depressed level of consciousness.)"

I'm not suggesting that anyone else has this, just to be clear! I think that the overlap in symptoms is not surprising given that serotonin has strong effect on platelets/bloodflow and cerebrovasculature.

I have not been able to get a second opinion on my condition and that's bothersome. I'm the only one working on it and I can't stick with it for long or get overwhelmed. Perhaps I'm in denial, but I just cannot accept a serious diagnosis (cerebral/CNS vasculitis) and prognosis without more input.

A friend's husband has vasculitis and spends full days at Cleveland Clinic once/month. His is pulmonary and he's in line for lung transplants, so a very different presentation.

Something is not adding up. That's the best I can explain right now.

B

about me · October 12, 2012

Barb, I think getting a second opinion is an excellent idea though I realize you are somewhat stymied on how to proceed. Have you tried to go back through the Doc at The Cleveland to ask him again for a referral? Maybe express some of the frustration you are having in finding someone you would (ahem) respect as much as he.. etc. etc. I do think there is someone out there.. it's a matter of identifying the person. Also, have you asked the endocrine you are currently treating with for a referral as well, under the circumstances he should understand?

I could never tolerate the steroids you are prescribed as they would make me cycle up and down according to the dose.. and . can you take half the dose 4X a day (QID as opposed to BID) to mitigate some of that effect?

October 12, 2012

Thanks, Schuyler.

My second request to the Cleveland Clinic (Las Vegas) neuro asking for referral was never answered. I've contacted Mayo (no response) and UCSF who sent me in another direction that I haven't pursued yet. I intends to ask my endocrinologist for neuro consult at last appointment, but was in too rough shape to speak beyond simple yes and no.

My strength in pursuing additional info is waning. I vacillate between "I don't care...dying would be fine" to what I wrote earlier today. I am having only a few hours per day that I feel any motivation or care plus clear thinking to take any action. I'm weary to my core and can handle it in very small doses. It's never discussed between me and husband.

I am supposed to take the hydrocortisone 3x/day and am currently at a very low dose for immunosuppression. I can't imagine taking 5x more if it is what is causing the horrible mood. Absoluely no way. The next step is to use a chemo/cytotoxic agent (Cytoxan). I thought endo was drawing a loose parallel when he mentioned "if chemo helps, we'd use chemo" at last appointment, but realized later that he wasn't referring to cancer. It is a standard treatment for autoimmune conditions. I always said that I would not do chemo for cancer.

This is just way too much to handle without support or someone doing some legwork for me. I've put far too many toxic prescription drugs into my body over the years.

Also, the vasculitis present on MRI was "chronic" as in started long ago. Symptoms flared during withdrawal. That makes me question the cause and what might change on its own over time.

October 12, 2012

Hi Barb, I've been out of the loop here at SA so I just read from where we left off.

Barb, my knowledge is very limited with what you are dealing with, so please forgive me if I sound dead-wrong and I could be.

For the hopelessness, low energy, is there something you can take to boost energy? Trazadone can cause a low mood and steroids give me anxiety. Is something stimulating bad for your endo system?

Check in on the support group I posted and see what the others are doing?

Your reaction to run is very normal to me....

Why wouldn't you feel this way...

Are you eating? Please say you are...it can really help you out.

Many hugs

October 12, 2012

Have you ever tried something like Ensure or Boost? If I know you, like I think I do, you're not eating very well.

Hugs and love you a bunch

October 14, 2012

Decreased hydrocortisone (for immunosuppression) over past 2 days and feel a bit less perceptual disturbance (*weirdness*) in early evenings.

October 15, 2012

Horrible morning. Laid in bed for hours after waking at 4:30am which I rarely do (lay in bed). Some neighbor got a yipper dog in the last week. Living on 1.5 acre parcels, you might think that wouldn't matter, but sound carries and my dogs hear EVERYTHING, especially at 4am. Like babies in a pediatrician office... one starts crying and all follow suit even though they have no idea what they're crying about. AAARGH.

Got up and had half cup o coffee and ice cream. I feel horrible. I said that already.

I dont belong anywhere. I'm not tapering. I sure dont feel like I'm progressing. I'm just hanging around waiting to die. Husband walks in room occasionally to see if I'm still breathing. I can hear everyone's reaction now "she finally kicked the bucket.. surprising she hung around as long as she did."

Back to horizontal.

EDIT: For anyone reading mid-stream... significant immune/endocrine problems missed over 20 years while treated for "depression", possibly triggered by serotonergics.

EDIT #2: Feeling less dreadful. WHEW!

October 16, 2012

Hi Barb,

Thinking of you. I hope today was better.

{{{BIG HUGS}}}

October 17, 2012

Hugs, Barb...

B

October 17, 2012

Hi barb

Just been reading your last posts as not been around for a while due to family commitments.

So sorry you've not been feeling well.

Just like to say I'm thinking of you

I'm grateful to you and others on this site for the valuable advice

Thank you

Sending love and hugs

Debbie x

October 18, 2012

Thanks, everyone. Your support means so much. I feel like I'm on an island with no help in sight. Nobody I know speaks of *it* or asks. No communition at all from family aside from one cousin awhile ago. Intellectually, I realize people don't know what to say, but the complete cut off really wreaks havoc with my already handicapped mind.

October 18, 2012

Barb,

I think about you every day. I realize that probably doesn't help you in the least but I do and I really wish there was something I could do or say to make you feel better. You are such a very special person and I feel so helpless and useless.

I admit that I can't understand the illness you have, but then, I don't even comprehend the illness I have either. I know meds have done us both (and all) a lot of damage but I'm not sure exactly what's been done to our brains. I understand that damage has been done to you that can't be reversed, only slowed or maybe stopped.

I'm so very sorry you're having such a terrible time. Like you, I have very little communication with my family but thankfully, I do have support from my spouse. I haven't always had that, though, so I can somewhat relate to your loneliness. It's like a certain kind of hell on earth to be so isolated and alone. Please know, you are loved by your 'forum family'.

Love you my friend,

Tezza

October 19, 2012

You are definitely loved by your forum family, Barb.

Karma

about me · October 19, 2012

Barb, I hope this message finds you feeling a little better. I don't know what to say about the lack of, ne non response from your family, except your first degree relatives appear to have little understanding about giving.. they show up when they need something from you, but the other way round is unfortunately not on their very sad radars. That is them, you are NOT the same, and we here are the beneficiaries.

Glad you are keeping us in the know. ~Schuyler

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

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