EternalOptimist: 17 days on generic remeron, want off

May 7, 2015

We haven't seen an update from you for a while EO, I was wondering how you are doing? Did you do any more body talk sessions, I didn't know what that was and had to look it up, it sounds a little bit like reiki.

May 9, 2015

Hello Petunia.

thanks for writing and I hope you're doing well.

No, I only did the one body talk. It didn't seem like a fit for me. I've been doing pretty well in terms of withdrawal tho continue with symptoms of CFIDS and/or withdrawal but it's been so many years I don't know what's what. The end of March my precious pet was diagnosed with congestive heart failure. Yesterday, when rushing her to the vet , she died on my lap , a violent but quick death. My heart was nearly broken. The stress of getting out the house at 8 AM with the neighbor driving was horrific. I was already in relapse mode from overdoing for 10 days. my nerves were so raw and the grief and horror so intense.

I've had a lot going on with having to get laser holes poked in each eye to widen the narrow angle and then get them dilated but because I don't get to doctors often it was stretched over a month. Broken big toe had to go to several doctors for that. Had to take my other cat into the vet several times. lot of vet bills too. Fortunately, family and friends have pitched in a lot to help.

So I don't know if I'm fully recovered from w/d. I still have a lot ahead pressure but it lifts partially on days but never gone. I don't know if this is the way I'll be . I just don't know if I'll ever be the same before I even took or came off the 2 drugs.

On a positive note, I'm still working with the homeo pathic Doctor Who was a trained psychiatrist. Only using homeopathy and I have to say I really believe this is helping me a great deal. I'm only using one constitutional remedy. it took about three months taking it before I thought it was helping. So, still working on my thoughts and words. The whole neuroplasticity work.

I enjoy being supportive to a couple of people in w/d and have recommended this site too.

Occasionally, I still call my supporters. I think of you people and keep you in my prayers from time to time. Perhaps I've reached a plateau where I can cope better and don't have to be on the computer which is not easy. Days like yesterday shows I've got quite a ways yet for healing of the brain.

Drop a line anytime, anyone from here.

All my best ,

EO

May 9, 2015

It's good to hear from you EO but I am sorry to read about your little dog, I lost my little Lady to congestive heart failure too and it was very traumatic so I can understand how it must have been for you. It is good to see that you are getting out and about, and that you are much better than you were when you joined us.

I love to see improvements in people, it gives my heart a lift to know that suffering is easing even if it isn't completely better. I hope you continue to get better EO, you've had a lot to cope with recently and need some time to relax a bit and recover and to grieve. Take care, Mamma hugs.

May 11, 2015

Thanks for letting us know how you are EO. I'm so sorry about the loss of your pet, I've also been through similar losses of beloved pets, so I know upsetting it can be.

It sounds like you've been having a stressful time lately with a lot going on, even for someone not in withdrawal, and yet you are coping, and supporting others, this sounds like improvement and recovery to me...and like MammaP suggested, take it easy for a while.

I hope you will consider writing a success story when you feel ready.

May 11, 2015

Thnx Petunia and MammaP.

The overdoing and grief has utterly wiped me out and feels like a wave coupled with relapse.

Brain doesn't feel healed enough to be a real success story. Feel vulnerable again and ill.

Maybe out of the woods but when like this, a little fear arises around seeing those " woods "

Again and strive diligently to avoid them.

Still, there is hope, for me and EVERYONE here.

So appreciate your popping in. The timing is curious. The support and compassion is valued.

Thoughts and prayers to us all!

EO

May 13, 2015

The timing is curious. ...

I don't know why MammaP popped in, but I was reading back through my own thread, re-read comments you had made a while back and wondered how you are now.

Please don't feel pressured to write a success story, I understand your hesitation. Waves have a way of undermining our confidence, making us think we have relapsed. Its not a relapse, just a wave triggered by recent stress. After recovery, the nervous system can remain vulnerable to stress for a time, it takes a bit longer before it builds back up to previous levels of resilience.

May 14, 2015

3:30am..Couple hrs sleep...worst head pressure of my life last night, shook st times...didn't think I could get thru it... 5 min at a time.

Seems like I was getting thru the loss and ordeal so don't understand the severe intensity of head Sx...oh, and disequilibrium last

4 or so days. What the? Trying to stay calm but don't know what to think. Came here to share. Thnx

May 14, 2015

Thanks for sharing! Although it is hard, given all that is going on with you I don't think it's really abnormal. You are doing well to just hang on, 5 minutes at a time. You can get through most anything that way!

May 14, 2015

Meime, thnk u. Am scared. Got up and curled up n couch. Bone crushing head pressure...is this from drug w/d, I'm questioning.?

Did get some sleep. Thankfully .

Why a week later it's so bad? Can't make sense of this suffering. These are my questions to myself. Any feedback is appreciated.

Thnx

Thoughts n prayers for us all.

EO

May 14, 2015

Well, if you knew for sure it wasn't withdrawal, what would you think and do?

May 14, 2015

Good ? , one I've thought of too. Too ill to do anything about it.

If had Lyme, like many think, would it get so much better then worse ? CFIDS goes up and down like this but with such severe

Head pressure,? Inflammation? When better, I don't ? All this cause I can cope. Thnx Meime...

Hope you've been improving overall..?

May 14, 2015

I think you're right. Right now you are too sick to take action, plus you've had a big loss, so the 5 minute plan seems like a good one.

I have self-decided that I have a mild case of CFS, nothing like yours, no immune problems. When you feel better, there's a lot that can be done, but right now just resting and surviving is a good goal.

May 16, 2015

Meimeiquest...sorry u may have CFS tho hope it's a mild case.

What works for me so far is the Candida diet, magnesium for sleep, eating organic, ....tried lot of stuff but too sensitive.

Many seem helped by low dose naltrexone and others have their own path... Homeopathy, holistic healing modalities, very overwhelming for someone who has this and trying to get thru benzo and AD withdrawal and recovery . I think the homeopathy I'm doing is helping. Finally something .

Still in a very rough patch. Worse now than last week. I guess it's going to take as long as it takes.

Best

May 16, 2015

I'm sorry it's still so hard! Please keep hanging in there! Yes, my case is very mild, it just helps to have some ideas about where to start looking. Have you read of the Gupta Programme? I am thinking of it as a back up if I don't rebound once this is all over. One thing that left me much tireder when I ran out was Carnitor. I think my problems are mostly in the mitochondria. But really, I'm on Easy Street. I wish I could give you a hand!

May 16, 2015

Mm. I have the Gupta program. I used to facilitate chronic fatigue syndrome support groups in several locations Off and on for 12 years So I qualified to get his program years ago. I found it helpful around the whole mental thought processes and how that affects the body and then I got into the new research on neuroplasticity and how our thoughts and words change our chemistry and even structure in the brain. I don't do so well when I'm in such a decline from so much stress, some of it even good stress. And it's when we need to do the work the most, it's the hardest.

Carnitor? I've heard of carnitine. Is it related? So you found it helpful. What did it help? Are you going back on it?

May 17, 2015

So do you think the Gupta plan helped? Yes, Carnitor is the prescription version of carnitine, Carnitine helps facilitate the entry of fatty acids into the cell wall (one the mitochondria, now I can't remember). Yes, I went back on. Most of the time I do pretty well in the daytime, but I run out of energy before I run out of day, And I have some cognitive symptoms and attention/concentration problems. And I am generally very slow, I have been my whole life (the other symptoms are more recent). But if I eat gluten or casein things go downhill fast. Overall I rated myself a 7 on Dr. Myhill's scale, which of course is very good.

May 17, 2015

Mm...is this the scale? Can't be if u r a 7 and that's pretty good in your words. Maybe he has different scales?

Never heard of him before.

http://drmyhill.co.uk/wiki/CFS_Ability_Scale_-_a_rough_measure_of_how_disabled_you_are

I'm c. 35.

Think Gupta's work can help... It's cognitive and some behavioral work.

Check him out at YouTube...https://m.youtube.com/watch?v=F75vj9V0BK0

How do fatty acids entering the cell wall help ?

May 17, 2015

She's tweaked what I read. I would be a 70 on that scale. 35 is very miserable! Fatty acids are "the" or "a" source of energy for the mitos, so getting them in is very important. Many things in our modern world, especially trans fats, can make the cell wall less permeable to their passage. Dr. Myhill's work is controversial, but she works with a lab that she believes can look at RNA in the blood and identify debris inside to determine what is interfering with the mitos making energy. Many people with mito problems have problems detoxing one or several types of toxin. Not that I could afford the testing anyway, but she is on indefinite hiatus from evaluating new patients as her workload is so great right now. I think there is so much going on in our environment and food supply that this is becoming an increasing problem. My saga started with fatigue.

May 17, 2015

MM..thanks for the feedback. Yes, we're a very toxic society. Still, there are those seemingly

unscathed...genetics, good childhoods, luck?

May 18, 2015

Hi,

Quickie as feel too ill or symptomatic to do much. Laying on bed doing the one finger typing or using voice recognition.

Seems each day I've gotten a little worse, maybe it's just the downhill slide til I hit bottom and then back up. I'm curled up tight trying to watch silly movies on Netflix on my iPad trying to keep my mind in neutral at least. I woke up this morning and my mind didn't feel right. Maybe too much grain last night, you know the whole grain brain theory.? Had considerable anxiety, old issues coming back up. Feel I'm on empty, I don't have the reserves to deal with all this but I have to. Life happens. Didn't see some of this coming.

Have been trying to separate what's emotional and what's physical from withdrawal. Probably doesn't matter. Either way I need a lot rest but a sick nervous system doesn't allow me to rest very easily. PTSD thoughts accompany this misery. I don't want to cry cause I don't have the energy and I feel I can't cope with even crying. This is make any sense?

Just needed to vent. Thnx

May 20, 2015

Sorry but need to post. 2am..no sleep yet...anxious...shaking on and off....PTSD memories, intrusive thoughts,

Head pressure has been severe and somewhat different...don't understand what's happening to me. Tho I wasn't well.

I had my mental health for quite a few months...stress breakdown then it gets worse? Had better hours this afternoon

Then hit with maybe anxiety attack or neurological sensations when coming to bed. Started with the severe head pressure, weird sensations down arms and legs, weakness, Shortness of breath, extreme lightheadedness, visual blurriness , heart pounding and shaking at bedtime. this is not usually a night event. Feel need to connect here. Thnx

May 20, 2015

Sorry but need to post. 2am..no sleep yet...anxious...shaking on and off....PTSD memories, intrusive thoughts,

Head pressure has been severe and somewhat different...don't understand what's happening to me. Tho I wasn't well.

I had my mental health for quite a few months...stress breakdown then it gets worse? Had better hours this afternoon

Then hit with maybe anxiety attack or neurological sensations when coming to bed. Started with the severe head pressure, weird sensations down arms and legs, weakness, Shortness of breath, extreme lightheadedness, visual blurriness , heart pounding and shaking at bedtime. this is not usually a night event. Feel need to connect here. Thnx

A year ago this time you had just ended your taper so it must have been a very fragile time for you. You are living that same time of year again and you are subconsciously aware what you felt the last time. That maybe a part of your set back. We need to learn small things again. To feel, to walk, how to look into mirror, how to meet people, how to be alone. Everything. Same time we should be able to change and unlearn the mistakes we have made. Also we need to relearn situations, seasons, holidays, birthdays, events, work atmosphere, places that comforted you at home while being so ill. They bring those bad memories back as well as the good ones, even if you don`t remember them. It is a state of mind that needs to change too and that comes only with time and acceptance.

So don`t fear this setback. It`s just a part of the process. Part of a bigger plan

You say in your sig that you are not consistent with your supplements. I would suggest that you take them regularly like your meds while tapering. We are all very sensitive. Going on and off your supplements may also be a factor here. Some of us react very strongly to them.

May 21, 2015

Moody blues 78:

Thnx for your post here. You bet, we have to relearn just about everything. I subconscious and our unconscious definitely can direct our lives.

Thank you for suggesting not to fear the setback. I find this statement quite comforting, at least in the moment.

During my better months I was very consistent with my supplements etc. Right now I have to force myself to be. Thanks again Moody blues. May you be doing well. EO

May 22, 2015

Hi,

Felt much better yesterday afternoon, more myself, woke this morning with the head pressure and strange head feeling seemingly worse with ,

Vision, thinking affected...at 14 months off with much better times makes me question how much of this w/d related.

Just feeling alone, confused, tired of so many years of suffering.

Thought I'd best post to vent a bit.

Thnk

Blessings and peace I pray for us all.

May 27, 2015

Question:

I've had the blasted head pressure

for 25ish years and so much worse in w/d, first the xanax then the mitrazapine.

Was doing so much better for a few months then stress hit. The head pressure

has been the worst it's ever been. Anyone experience a worsening of an ongoing

symptom further out and/or in a bad wave? Thanks

Best to all.

May 28, 2015

Hi

Little embarrassed to post again but am really struggling. Last 3 weeks have been downhill.

Are waves like this, that it gets worse over time? It's déjà vu ...been here before.

Thnx

May 28, 2015

Please don't feel "embarrassed,". You are very brave, fighting a ferocious battle in the shadows. We are thinking of you!

May 28, 2015

Hi MM and thank you.

Scary to be here again. Does anyone have that magic wand?

Anxiety, CFS, w/d...all involve the nervous system. I'm concerned about growing old with life's events and not being able to handle this. I would think that my brain, nervous system would've healed better by now. I may have to hang on here for a bit.

Brain/head Sx too intense to follow others. Want to. Many CFS people avoid electronics for this reason alone. Argh

Need to keep my thoughts, at the very least, neutral. A work in progress but not as sturdy as it was just recently.

There are many brave and bright people on here. Continued wishes for recovery for us all.

EO

May 30, 2015

Have a question. With waves, windows, waxing and waning etc. , do others have hours where your brain and mind, tho struggling, feel somewhat normal then it seems you're not all there? I was laying watching movie to stay calm, the head pressure was building then I couldn't concentrate or see well which, for me, sets off angst cause the simplest of things seem overwhelming including thinking.

This is scary tho been here before, just never quite put the question out there. Thnx for any feedback.

As usual, wishing for that healing for us all.

June 1, 2015

Withdrawal and a CFS sure is a double whammy! I have weird/ crazy symptoms and sensations off and on all the time, never know what to expect, only the unexpected! I concentrate on my breathing and think 'this will pass'.

Hang in there, it's all we can do.

June 1, 2015

Thank you Cherry. I didn't see an email with your reply. Good reminder to breathe. it does pass but getting thru is no picnic.

Best to you.

June 2, 2015

Hi Eternal optimist. I was on remeron for two years. and tapered off over a 2 week period. that was the only drug that severely effected me causing withdrawal. I tapered too fast. uve only been on for 17 days so that's good. all I can say is go slowly cuz my withdrawals were hellish. I should have tapered over several months but I was desperate to get off cuz I was already seeing so many problems. I was prescribed remeron for insomnia too but I think its worth going off the drug. insomnia is terrible but there are others way to improve it. in fact this past year I have slept much better and almost every night have gotten restful sleep for sometimes up to a good 8 hours. all I can say is be careful and good for u for wanting to go off this drug. it has caused me a lot of problems and I don't think anyone should be on it. im sure youre relatively safe after only 3 weeks and u will heal from it. wasn't until 18 months of being on it that I started to really really struggle, and then tapering from pretty bad brain fog and depression to absolutely debilitating, unspeakable suffering. not saying it to scare you but to encourage you to taper now before ur on it for a year or so

June 2, 2015

Hi Eternal optimist. I was on remeron for two years. and tapered off over a 2 week period. that was the only drug that severely effected me causing withdrawal. I tapered too fast. uve only been on for 17 days so that's good. all I can say is go slowly cuz my withdrawals were hellish. I should have tapered over several months but I was desperate to get off cuz I was already seeing so many problems. I was prescribed remeron for insomnia too but I think its worth going off the drug. insomnia is terrible but there are others way to improve it. in fact this past year I have slept much better and almost every night have gotten restful sleep for sometimes up to a good 8 hours. all I can say is be careful and good for u for wanting to go off this drug. it has caused me a lot of problems and I don't think anyone should be on it. im sure youre relatively safe after only 3 weeks and u will heal from it. wasn't until 18 months of being on it that I started to really really struggle, and then tapering from pretty bad brain fog and depression to absolutely debilitating, unspeakable suffering. not saying it to scare you but to encourage you to taper now before ur on it for a year or so

August 11, 2015

To STrongereachday

I'm so sorry..I didn't see you post til now. Seems you were doing good when you wrote it. Hope that's

continued.

I haven't been on here as it's just too difficult with the head sx and fatigue, etc. However,

I'm in such a pickle again. Severe setback, last night total insomnia and shaking all night.

This is where i've ended up in trouble. I'm working with a homeopath and hope she can help/

i am hanging on with fingertips again. Weak, agitated, shaky, head pressure horrid, etc.

Best to all

EO

August 14, 2015

Hi

In a panicky state. 15 months off and worse now, was better at 5 mos. off.

Used homeopathy which helped but don't know why it's worse. Had some stressors

But that's over. Quality of head pressure has changed. More raw. Just needed to share

August 17, 2015

Hello again. Have a question for somebody(s).

This pressure in my head has changed and makes me feel crazy, the pressure alone. And then my legs feel strange, it's a crazy feeling. I don't know how to describe it. between the head and my legs I can't walk well Aand have to lay down most the time.

Does anyone relate to this? I'm beginning to think of the Lyme diagnosis again but don't want to .

Thnx

EternalOptimist: 17 days on generic remeron, want off

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