12-18 month support

[[mr...]]

Good morning -- afternoon, everyone.

 

I took some asha - something, I can't look for that spelling right now.  I took it early, like 1 a.m., it's supposed to wind the brain down, reset it to go to sleep earlier.  and I did sleep, from 3:30 until 11 a.m., only one wake up. 

 

Guys, I was doubting myself -- maybe Nova's post triggered these thoughts. I've been thinking, could I possibly be making this up?  Is it psychosomatic?  Isn't it crazy that most people seem to be moving on with their lives, and I've still got this crazy shit going on? After 16 months?  It wasn't wave thinking, it was just me, sort of stunned myself that this could still be happening, and questioning, that maybe there is something wrong with me mentally?  I've been having a lot of doubts. 

 

Then I thought of Baylissa, she is very normal,  a counselor herself, and this happened to her, and she came out on the other side, wrote a book, helped a lot of people.

 

And then I started thinking about this guy from here, I guess I can say his name, I'm not saying anything that he didn't post publicly on here, Tex67, he had an "early" success story, less than a year, went back to work, and when I looked him up today, unfortunately, he had reinstated and was doing a very quick taper, starting all over again.  which made me think of More Chocolate, another 7 month success story, and she came back at 16 months with an awful wave, and then finally another success story at somewhere less than two years.  So that kind of validates what I believe.

 

But I'm having trouble with my level of function.  I don't seem to be doing as much as I think I should be.  Other people seem to do more.  People are back to work.  they get on planes, go on vacations.  I still have a major problem sleeping anywhere but my own bed.

 

I guess it's all individual.  I guess I do some things that other people are looking at me and thinking, wow, I'm not doing that.  Or we have some people still mostly on the couch, real all-the-time fatigue.

 

Guys, this is HARD.  and it takes a damned long time.  I've been putting one foot in front of the other for a long time, and now I want it to be over.

 

Hope you all have a better day.

 

Green...I didn't know tex reinstated...and he is tapering again?  Guess we have no choice even if we ever wanted to(which I won't).  I know of no reinstatement that worked on this board yet.  I also read of morechocolate.  I didn't want to mention it.

 

I too was having thoughts of me having no way to avoid protracted last night.  Nothing on this journey has been easy for me.  From years of tolerance, to a horrendous taper that was very slow by all accounts(26 months), and now very symptomatic.  I assume I am a really bad case and I'll be one of the 3-5 year peeps.  I just hope I continue to see improvement as time goes by.  right now that doesn't seem to be the case.  I really don't want to be posting here for that long and I will be pleasantly surprised if I heal earlier.  I thought I'd be better at six months which I was but nothing really has gotten too much better.  No big corner has been turned.  Hopefully, you ahead of me can really see some acceleration soon and I'll be more optimistic.  No pressure   Sort of in this resignation zone today.

 

Drew,

From what I understand he started getting Valium  from Mexico because he had a little anxiety one led to two and two led to three and so on. I think he decided to c/t. stories like this just make me irritated that people do not know better. "Playing" with benzos is playing with fire.

 

Jenny,

 

**BLESS YOUR HEART** for saying what you did   It clarified so much for me, and it helped me to gain better perspective about it.

 

Mrs.

[[mr...]]

Coop,

 

I just wanted you to know, I recently went in to have my eyes checked.  I was having some pains, dryness, a few floaters, etc.  Anyways, she did the "full work-up" on me ~ everything checked out GREAT (as usual, and thank you Jesus!). 

 

I was a pitted-out and sweaty chica while in the appointment, LOL!  Everything they did to check my eyes was absolutely no big deal, and did NOTHING to withdrawal symptoms ~ I was COMPLETELY fine afterwards, LOL!  But you know how it is   It was the most non-invasive tests I've probably ever had, haha.  Anyways, I use a non-preservative eye drop now and my eyes feel fine   I've read of many people having symptoms in their eyes, so it's pretty common it seems for withdrawal  

 

Hope you're feeling better now.  And, good for you for making the appointment!  The fear has no truth to its basis, and you following through despite it's lies is something I really admire   Love to you girlie,

 

Mrs.

[[Co...]]

Thank you so much Mrs. That is so reassuring. I am not afraid of the test. I am petrified that they are going to tell me I have some horrible brain thing. Completely irrational and benzo w/d. Everybody's comments and sharing thier own stories helps me more than anything. I love your strategy of seeing who we really are as how we are in a window. Drew says that's helping him a lot too. I am work

ing through this thing king about how I was and who I was before benzos and how much that mat he's up to who I am in a window. ...I am glad all your test results came back healthy. Were your floaters constant? ..Mine are subtle but pretty constant and worse in the sun. ...Did they go awyay.

......Take care Mrs.....coop

[[Co...]]

Love to you too Mrs.....so glad that you are on

[[No...]]

Hi Coop ... when asked yesterday ... I told the ER folks that on a scale of 1 - 10 I was at 17 ... they heard what I said and moved on ...

 

I slept well last night and am still tired today ... and a pretty moderate day today ... some breathing stuff and some boaty rock and rolls ... nothing exciting ...

 

 

[[mr...]]

Thank you so much Mrs. That is so reassuring. I am not afraid of the test. I am petrified that they are going to tell me I have some horrible brain thing. Completely irrational and benzo w/d. Everybody's comments and sharing thier own stories helps me more than anything. I love your strategy of seeing who we really are as how we are in a window. Drew says that's helping him a lot too. I am work

ing through this thing king about how I was and who I was before benzos and how much that mat he's up to who I am in a window. ...I am glad all your test results came back healthy. Were your floaters constant? ..Mine are subtle but pretty constant and worse in the sun. ...Did they go awyay.

......Take care Mrs.....coop

 

All eye symptoms for me have been mild and came/gone The non-preservative eye drops have been very helpful ~ eliminated almost everything! Now, if I will just discipline myself to wash my eye makeup off every night consistently, lol!!

 

Mrs.

[[dr...]]

The surge from hell has left me about an hour ago. The aftermath is one of utter brain fry and exhaustion.  Might try and do a short walk to see if it helps. For some reason have not been able to nap at all lately.

[[je...]]

So sorry Drew.. You will get through this, and you have a great attitude so that will take you very far in your recovery.I think an easy walk will help. Feel better, jenny 

[[dr...]]

I just finished a gentle two mile walk in a state of total DR. Scary but I've had it before but lately the level f DR seems worse more often. Don't know if I just notice it more because my symptoms have seem to recently shifted to way more mental than physical. I hope this level isn't a new more regular visitor.  It seems to be really bad and lessens as time goes by if I distract myself. Walk...take out garbage...empty dishwasher, post to my buddies , cook dinner...

 

I believe the shift is a sign of healing.  Have you others ahead me experienced this? 

[[Co...]]

Drew, glad to hear that you have been coughed up onto the beach....a little beaten up and worn out ...no migrsine ?...Seems like you should be getting some better days now.  Going outside alwas helps me too.

....My panic has faded and now I am getting some of the cortisol surge from my beta blocker dying out. ...Nothing compared to the panic, but has me jangle up. ...

.......Hope your walk helps and wishing you a peaceful evening....coop

[[Co...]]

Drew, yes.  I didn't have very much d/r/p at all ...all the way through year one. Some brief episodes of it. ...I got hit with it hard right at the beginning of month 15..The intensity and heaviness of it scared me too. I posted to Green about it a couple of times. I also read the posts on the D/R D/P  support group.

.....I do think it is an indication of healing. I did the same thing that you are doing...putter putter putter...go outside....anything to distract. All of a sudden it would just clear up...like switching to HD.. so wierd. Going outside was huge help because it changed my focus .. I hope it clears for you....coop

[[mr...]]

I just finished a gentle two mile walk in a state of total DR. Scary but I've had it before but lately the level f DR seems worse more often. Don't know if I just notice it more because my symptoms have seem to recently shifted to way more mental than physical. I hope this level isn't a new more regular visitor.  It seems to be really bad and lessens as time goes by if I distract myself. Walk...take out garbage...empty dishwasher, post to my buddies , cook dinner...

 

I believe the shift is a sign of healing.  Have you others ahead me experienced this?

 

Shifting from more physical to more so mental...yes sir. Yessssssssssssssssssssirrrrrrreeeee.

 

 

 

I agree - a good sign of healing. Albeit uncomfy (IMO).

 

Mrs.

[[ra...]]

Hi - I thought by now I would be so much better, but not, only slight improvement since 1 year off -Anyone still having bad sxs at 15 months, that come and go  from hour to hour sometimes? If you are having them at this stage, could you say what sxs they are please.

 

Thank you.

[[dr...]]

Racksha...I'm sorry I'm behind you.  Hope you get an answer

 

okay all...I am going back to the drawing board.  No anything...I have had no headaches and no muscle soreness stuff which is huge for me BUT i really think the mag is doing something to me and I don't like it.  I mean I am hardly getting any breaks intraday which is rare except for the worst of the worst days.  It may be a coincidence I am in the worst wave I can remember but I have to try something.  I am currently taking 400mg of Mag and two days ago when I felt a little better I started the preventa migraine.  I stopped that after one day but I have to give my body at least a week or so at baseline.  I was so impatient and now I am pretty sure I am paying the price for it.  I was perusing Baylissa's book and she mentions mag specifically in her bio as screwing with her.  It sucks...seems to help me immensely one way and hits me hard in another. 

Very uncomfortable again and felt like staying in bed but it is important for me to keep my routine. I am now at work and  I am passing time.  I am not in a state of panic but just feel very yucky  

[[ga...]]

The mental stuff is miserable.  Here I am after a couple of better weeks right back in it.  Three nights of little sleep, a head cold and worries about things I can't control.  Latest that I am blowing out of proportion is an MRI my wife just had on her back.  I actually looked at hers and saw things that concerned me....so I go off to the internet and start browsing.  Well...I scare myself to death looking at similar pictures that show spinal tumors.  You may remember my wife has a history of breast cancer and melanoma.  Sooo..I scare myself into believing she has metastisis of her cancer. My therapist would be livid with me along with my wife for looking this stuff up on the internet.  Being curious, I just like to research things...and I scare myself silly.  Of course, most of the times it turns out to be inconsequential.

 

It is just more beating myself up for how I am living my life.  It should be about living for the day and enjoying the moment rather than creating anxiety and depression in my life.  I get so down on myself for this.  The self talk is ratcheted up and mostly negative.  I just don't want to be like this for the rest of my life.  There has got to be more contentment and happiness to be had.

 

Thanks so much for putting up with my whining today.  Just had to vent.  My wife is going in this morning to talk to her doctor about the MRi.  Probably just herniated or bulging disc that are causing her pain....that's all I hope.

[[dr...]]

Hey Garton...no need to apologize for the Curse of the Google.  I am so tempted to start googling everything about magnesium and gluten free diets.  I have to fight it too.  hang in there my friend. 

[[ga...]]

I think many of us have that in common.  It is just so easy to get caught up in doing google searches on all kinds of stuff.  Many of us dealing with health issues get in over our heads.  Hard to distinguish between fact and fiction.  You can read whatever you want into some of what you're researching.  Unfortunately, this does little good for those of us who want answers. 

 

 

[[Co...]]

Racksha, I wrote a long reply to you this morning and accidentally deleted it. ......

.....Unfortunately, 24 months seems to be the average for healing. Ashton refers to this time frame in her revised statement regarding time frames for reliable healing. I am in month 16+ 3 weeks. I have periods of improved baseline...the time in between windows and waves. In the second year I have had good windows and one 5 day string of windows. However my waves are longer and I have had one wave that was just like acute that was about 2 weeks long. My sx in the second year are sometimes the same as in year one however some sx have dropped off. Some sx in year 2 for me, are new.

In between windows and waves my baseline is reliably 85%.

....Time, distraction, BBs, going outside and maintaining a routine are my strategies for getting from one window to the next. Lavender Epsome salts hot baths, hot packs, electric blankets, arnica, gentle yoga, and really really green clean nutrition are my remedies for body pain. I have tried various herbals, vitamins, supplements and homeopathics . . none of them helped me and some of them made things worse. Some BBs do use supplements and otc medications or adjunct medications and though trial and error find some that they feel help.

.....I really think the only way out of it is through it...acceptance of each day as it presents itself goes a long way. ....It is hard but Ashton and many w/d professionals tell us that everyone who sticks it out heals.

......This is a good thread with great people and support. ..Wishing you some sunbreaks ......coop

[[Co...]]

Drew,..man, sorry the magnesium is giving you some problems. Is it revving your anxiety?...So many of us got hit with a bad wave right about where you are. You are pushing forward and that seems like the only thing we can do. I am so glad you are not getting more migraines. You are right about maintaining a routine...at least that helps you feel like you have some shred of normalacy. ..Drew I think when you stop the magnesium for a few days you will feel better.

.....I am still in panic hell...I just got in a spin over this eye thing and going to the opthomologist tomorrow. Then my b/p spiked up and I took 6 mg of atenolol....then got the rebound cortisol rebound rush from the atenolo. I might have to stay on it for a few days and titrated down when my b/p levels out. It has been one cascading panic followed by another. I am really good about staying off of Google because it scares me to death. ....this one has me up against the wall...I won't lie, I thought about reinstating for about 2 minutes before I remembered that I felt worse on the ativan....and to tell the truth the b/p meds help the panic as effectively as the ativan. I feel disappointed in myself that I couldn't get a grip on my medical fear and let this spiral.. like I should have been able to control my crazy thoughts and fears but they take on a momentum of thier own before I can put the breaks on. Some days this is just unbelievably hard but we get through it....with all the support we get here....

.....Drew, I think we will both feel better in a few days... .coop

[[ga...]]

Coop...I am much like you in the way that you put that focus on "medical" issues.  I have been somewhat of a hypochondriac all my life. I deal with this by trying to figure out all the "what if's"  which of course creates more fear and panic.  Is it not within us to just shut this stuff down for a bit.  Relax and realize we are not dying and that we have something that is really not all that serious going on.  It's amazing how we push the panic button when fear starts to set in.  Always thinking the worst.  How many times have I done that with myself and my wife......still doing it while  waiting for my wife to call with the input on her spine MRI.  We can be our own worst enemy at times.

[[Co...]]

Garton,....yes the mental roller coaster is torture. I am sorry to hear that you are in soup. It is hard not to be overcome with worries for our loved ones?...What did you de idea about your own back issues ? ...You will get some sunbreaks again Garton. What distractions work for you? ...I hope all is well with your wife....coop

[[dr...]]

coop-I read Ashton but never saw she revised it to two years.  Interesting...

I am unsure if it is the Mag but I have to rule it out.  It may be the feverfew which is wreaking havoc.  I am unsure so when in doubt go back to basics.  I can always add back in.  As I am typing this got hit with a dizziness/headrush...it's all just my body trying to find homestasis...it's all just my body trying to find homeostasis

 

coop2- don't beat yourself up on the health anxiety.  We all know how insidious it is.  I felt the same way after I voiced all my concerns to my gf.  Stay off google and you know you will be fine.  I have been making it through this episode by reading Bayliss' book.  It has kept me grounded in during most of this lately.  It is all just normal symptoms so why fight them....I'm back in the canoe...my canoe keeps hitting rocks though

 

Garton-our own worst enemies most of the time  

[[Co...]]

Garton, yep...I relate to everything you say. I go right to the worst. I know this eye thing is probably very minor. I have a wierd floater that is different than a dot...looks more like an amoeba.  The receptionist said something about occular pressure and I was right over the cliff. Like you, I go to all the what ifs but trying to stay distracted and keep my mind reined in until I see the opthomologist. ..then I will have to titrated off the b/p med.  ..and find my way back to a baseline again. I figure this has set me back a month.  Onward we go....coop

[[No...]]

Hi Folks ... sorry to hear you are all in the soup today ... day in and day out ... as Peace would say ... boof ... can't remember if I spelled that right ...

 

I sent off an email ... to the BSRDC ... Benzo Symptom Relief Day Committee ... it is official ... tomorrow is Benzo Symptom Relief Day ... all inclusive ...

 

 

 

[[ga...]]

Thanks for your concern Coop....saw the doc yesterday and have learned that the back pain is mostly due to arthritis and some bulging discs.  I will have injections in about a week or so to help relieve it.  Best remedy is physical therapy and ice.  Nothing serious that will keep me from swinging a golf club.  I will get through it...just annoying.

 

The sleep issue and all just started up again the past few days.  More worrying about my wife's health.  She has had stabbing back pain at times for years.  Just decided it is time now that I am addressing my back issues that she would get hers checked out.  Hopefully, some answers coming shortly.

 

As far as distractions...nothing working now except writing to you folks.  I have a cold and combining that with no sleep...well you know how I feel.  No exercise, golf or much of anything today.  For me, work is a good distraction, but called in sick today.  Feeling depressed today.  It will change as it always does.  Just hate being in the middle of it now.