12-18 month support

[[No...]]

Coop ... thanks for listening and you encouragement ... much appreciated ... let's all get some rest ...

 

[[He...]]

Good night my friends. Wishing everyone a restful and healing sleep. Tomorrow's a new day. 

[[Gr...]]

Hi Green, thanks for your post. ..So glad to hear that your afternoons are back to clarity..I hate the cog fog. How are your body aches?...Mine have mysteriously disappeared ...overnight...unbelievable...they have been replaced by scalp or muscle spasms in my left temple and behind my ear. My health fears are fully engaged ( working on better self talk). I think my wave is trying to lift. I had better sleep last night. So maybe I will find my way back to a good baseline.

....You are sounding better Green...You are so right.  we still have months in front of us before we see month 24, but I am hoping we see more good healing by month 18 to keep us in the marathon all the way....the finish mark is in sight....love to you Green...Wishing you steady improved baseline and effortless mind days.....coop

 

Coop, amazing, again we have the same symptoms, same time.  Body pain, mostly gone, except for stiffness from being out of shape, and feeling beaten up from the body pain I did have, if that makes any sense.  Now I'm getting all kinds of head and scalp pain, some sinus pain.  And I had three days of right side head, nasal ear, throat -- hell, the whole right side of my head, down to the neck, very painful.  and the scalp, I think that's caused by muscle tension.  it's more than a little uncomfortable.

 

boy, we don't get many sunbreaks, do we, Coop?  and we need our sunbreaks!

 

Love to you, and wishing you better, easier days.

 

I'm back on the thread.  I was having a tough time.  just tried to ignore it as best I could.

 

ignore the sx, not the thread, lol

[[Co...]]

Hi Green,...wow.  what kind of new hell is this?!!  Thank you so much for posting about your head pain. Really unbelievable how our sx follow each other.  Did your head sx feel like little muscle spasms or contractions from the inside of your head?...This one has me begging for mercy. I had a total panic this afternoon ...momentary, but the whole 911 call the ambulance panic. I didn't call the ambulance as I knew it was a panic.  but damn! .I did take a 'rescue' atenolol ( a crumb off of 6 mg)...it eventually helped...then poor Nova talked me through the last few hours. I am still scared every time I get a jolt of nerve pain in my brain but starting to believe that it really is w/d ....Nova is complaining of nerve zaps in his shoulders and neck.  HH is noting torso squeezing, Jenny is complaining of head weirdness...even Mrs is posting about fear and anxiety...welcome to Hotel Anxiety....I think ( when my rational mind can get a word in ) that the head contractions might be muscle as moving my head in a certain motion triggers one. Did you get a headache ..I had one yesterday and got rid of it eventually by taking an excedrin and slept really good...but woke up with a squeezing temple

......What the hell is with getting new sx at 15, 16, 17, 19 months out......yep...not many sunbreaks the last few weeks.

  .keep me posted..if you end up ok I am not going to the doctor...lol ..hope this lets up for you Green ..really glad you are back on the thread....Sleep good...coop

 

[[mr...]]

1:06am and still plowing...with two 40-minute "stuck" incidences...

 

Mr is less than amused now...

 

Holding down the fort here. Being a cheerleader & a good french-kisser as needed.

 

Sleep well, buddies. Go to he!!, benzo crap.

 

Mrs.

[[No...]]

Good Morning ... well ... the late morning, for me, after the day before ...

 

Thanks Coop for being around last evening ... I did manage to settle down enough to fall asleep even with the grabs and jolts ... now really hung over and foggy ... with chest anxiety ... and sinus and throat plugged up ...

 

I am tip-toeing very quietly trying not to wake up the beast ... 

 

I sense this stuff is all about muscle and tendon and fascia response to something ... and the thing we have in common is our healing ... so let's attach this stuff there for now ... and I certainly have no reason to suspect anything else ...

 

Good to see you Green ...

 

Mrs ... ah .. love in a snow bank ... 

 

HH ... hope we all have a quiet day ...

 

[[Gr...]]

Hi Green,...wow.  what kind of new hell is this?!!  Thank you so much for posting about your head pain. Really unbelievable how our sx follow each other.  Did your head sx feel like little muscle spasms or contractions from the inside of your head?...This one has me begging for mercy. I had a total panic this afternoon ...momentary, but the whole 911 call the ambulance panic. I didn't call the ambulance as I knew it was a panic.  but damn! .I did take a 'rescue' atenolol ( a crumb off of 6 mg)...it eventually helped...then poor Nova talked me through the last few hours. I am still scared every time I get a jolt of nerve pain in my brain but starting to believe that it really is w/d ....Nova is complaining of nerve zaps in his shoulders and neck.  HH is noting torso squeezing, Jenny is complaining of head weirdness...even Mrs is posting about fear and anxiety...welcome to Hotel Anxiety....I think ( when my rational mind can get a word in ) that the head contractions might be muscle as moving my head in a certain motion triggers one. Did you get a headache ..I had one yesterday and got rid of it eventually by taking an excedrin and slept really good...but woke up with a squeezing temple

......What the hell is with getting new sx at 15, 16, 17, 19 months out......yep...not many sunbreaks the last few weeks.

  .keep me posted..if you end up ok I am not going to the doctor...lol ..hope this lets up for you Green ..really glad you are back on the thread....Sleep good...coop

 

Coop, it's definitely about muscle contractions.  When I read Nova's link, I think it was from Ashton, I latched right onto that.  The head pain I had was extraordinary, even for this withdrawal!  different than the headaches and head pressure.  It was a tightness that involved my whole head and scalp, as though I had one of those caps on used for streaking the hair?  More than tight, really quite painful.  When I read Ashton's explanation, I knew that was it immediately, it just made sense.  And then I had a different kind of scalp pain after that, that felt more sensitive, like the nerves in the skin were involved.  I only mention it because it really hurt, very very tender to touch, even hurting to lie down on the pillow.  And a week before that, the right side pain in the head and neck, which involved fullness and pain in the ear, earache, jaw pain, sore throat, my whole mouth was sore and inflamed.  Thought I was really sick, but then I thought, this is so bizarro, only on the right side, so painful, and the left side, absolutely fine, it has to be withdrawal.  Still, I have three pretty miserable days.  and then it cycled out.  Like all of our symptoms, it doesn't sound like it should be awful or scary, but it's always so weird, unfamiliar, the kind of sensations and pains we get, that it forces us to consider we might have some weird medical condition.

 

Hopeful.  The last two days I started feeling a lot better in the late afternoon.  And today I woke up feeling pretty good.  nothing hurt, I didn't feel sick, nauseous, tired, no mental symptoms, actually have a little energy.  So even if it lasts a little while, we need these little breaks for when we get back on the chain gang!

 

This will break, Coop, they always do, and we've been on the same track for a long time.  We just have to keep each other's spirits up a little while longer.  I was reading Lostdog last night and have renewed hope!

[[Gr...]]

HH, I think we say the same things over and over because we have discovered and borrowed from our friends the mantras that over time get us through...like ritual prayers and saying the Rosary.  They give us comfort and bolster our belief and courage. We get tired of them and resist them when they fail to be comforting. . And then return to them because they are the best we've got. .. I am tired of all of mine too right now. I not only feel stuck.  I feel outrageously set back ...through no fault of my own.  after playing by all the rules....I don't want to keep my feet going on this path...I want to sit down . in the sun. I don't want to be brave and I don't want to be positive. I want to wrap up in my selfish sadness and be angry when I am done being not brave and sad...lol

  ..It just pisses me off to no end that I would get a new...scary sx at month 15.. I know that I will eventually deal with it...it hasn't killed me yet...guess that's the first clue that I will have to deal with it.  First I am going to be sad...and mad

  Well, we certainly all are owed a decent day tomorrow. We are with you HH.  We will all compose some new mantras and touchstones for the last few months of this...maybe some sad and mad ones...coop

 

We seem to deal with all five stages of grief, with every bad wave, every new scary symptom.  Hang on.  I've noticed a pattern, by the time we get to "mad" something gives, I don't know why, the wave seems to break.  Our new waves are all about pain and physical symptoms, it seems.

[[Gr...]]

Good Morning ... well ... the late morning, for me, after the day before ...

 

Thanks Coop for being around last evening ... I did manage to settle down enough to fall asleep even with the grabs and jolts ... now really hung over and foggy ... with chest anxiety ... and sinus and throat plugged up ...

 

I am tip-toeing very quietly trying not to wake up the beast ... 

 

I sense this stuff is all about muscle and tendon and fascia response to something ... and the thing we have in common is our healing ... so let's attach this stuff there for now ... and I certainly have no reason to suspect anything else ...

 

Good to see you Green ...

 

Mrs ... ah .. love in a snow bank ... 

 

HH ... hope we all have a quiet day ...

 

 

Ah, Nova, it's the fascia, that's the word, that's what hurts!  so that's not about the muscles, is it?  More about the skin and nerves?  I'm asking.

 

Yes, let's hope for a quiet day.  2 a.m. for Coop is 5 a.m. for you, isn''t it?  even I'm in bed by then.  You had a very long night. Hope today is a better day.

 

And, yes, the weather is too awful to take a walk, for me, too.  And I'm guessing that walk was more helpful than I realized, because I'm missing it. 

 

have a better day today

[[No...]]

Green ... fascia ... as I understand it, and please don't quote me, I ain't no physio person ... this is from Tai Chi ... the fascia is the "connector" between muscles and tendons ... sort of a mediator between things ... and it is all over the body ... literally everywhere ... we have the bones tied into muscles and tendons ... and the fascia is there to support the muscles and tendons ... sort of like butter on toast, if you will ...

 

And it is very active and dynamic ... and needs "lubrication" or it "hitches up" and "grabs" ... it is not the nerve pathways ... though it helps support these as well ...

 

Kind of like the lymph system ... always working "behind the scenes" ... and for those with some experience ... it may coincide with the meridian pathways ... as I believe it does ...

 

Hope this helps a bit ...

[[Co...]]

Green.. thank you so much for your post. You are the voice of reason this morning. I am so glad that you are starting to feel better. The muscle/nerve/fascia makes total sense to me. My head contractions were not there this morning but a migraine took thier place. I took a tiny chip off a 6 mg atenolol the last 3 days and the migraine could be rebound from the beta blocker. Yes, the stages of grief...I always end up at total resignation and acceptance. But it feels like complete giving up...like..." what the heck..whatever". 

....Green.. you are such a voice of reassurance. I could not do this without everyone here. 

...so glad you are back on the thread, but we totally get it when you take breaks ...I think we all take breaks from the boards ....thank you Green...Really wishing you an effortless mind day...and week...and life...love to you ....coop

[[Co...]]

Nova, HH and Green..

....thank you so much for being there through a miserable night. ...Nova, I know you probably feel wiped out by your day and night of body pain and battle fatigue..but I hope your day opens up to some peace and relief.  Thanks Nova...love to you....coop

[[Sk...]]

A lot happened last night, I see. Now, if I could only remember what I read....

 

This is just a note to say hello to every body. I have finally had my period, which means that the awful agony I was in yesterday, the pre- period-in-wd-hell, is over.

 

Now, I have only some head pains, and some discomfort,  but the palps and vibrations are su much better.

 

I got so agnry reading your past posts, this much suffering  outrages me, and by now, at this stage, we are patient people, we are not scared easily anymore.

 

Green, great to see you back here.

 

Hugs to you all, I am near you in your suffering, I wish I could help somehow to make it better.

 

Sending healing thoughts to  everybody.

[[No...]]

Coop ...just hanging out today ... the morning sure goes by fast when you don't wake up til 8 AM ... waiting for our next blast of weather to come through this afternoon and overnight ... cold here now ... will warm up for a few hours and then go deep freeze again ... Atlantic Canada weather ...

 

Forgot to check to see what the ground hog had to say this morning ...

 

Doing okay ...

 

 

 

[[No...]]

Sky ... thank you for your thoughts ... we need you to keep thinking them ... have a quiet day ...

 

[[No...]]

Checked on the ground hog ... he saw his shadow ... six more weeks of winter ... guess what's for dinner ... 

[[Co...]]

Nova..., the groundhog saww his shadow...then he tried to escape over the wall...lol

....Are you feeling a little better today? ..I really hope so. ..My head spasms seem less today but migraine is on board. Up and slowly moving around I hate being in bed.

.....thank you again Nova.  Have a much better day.. I am just barely puttering around here.  Post me for conversation if things get boring/ scary/ frustrating/ crazy/ depressing...well you get it.  Thinking of you dear friend...coop

[[Co...]]

Sky...,Glad to hear that you are on the upside with girly sx...

.....Would you mind telling me a little more about your " head pain"...I am not wanting to focus but knowing what others are experiencing helps me immensly to stay out of the crazy zone with health fears.

  You are so steadfast with this Sky...all of you make me look like the wimp of the BB boards....Wishing you a day of sunbreaks....coop

[[No...]]

Coop ... I am mostly puttering ... watching this little storm start up with a little snow ... sort of feel "congested" and boaty ... no zaps for now ...

 

I can do six more weeks of "winter" ... I would just rather not ... Time, our remedy ... and sometimes my sense of discouragement ...

 

It is good to have a "connection" during the day ... feels like the good old times last spring and summer ... 

[[Co...]]

Nova,...things are looking up a little here.  kind of afraid to trust it.  Still feeling traumatized by the past few days....past few weeks of wave. ...Like you, I am taking it very easy and just puttering. ( there must be something more to life than endless puttering ). I am so glad your zaps went away. Mine are diminishing...the migraine seems to be winding down into a run of the mill garden variety headache. I chanced half of an excedrin. Hydrating myself to the point of drowning.

...We have a rainy storm here too...really cold and wet. Going outside really helps my everyday sx so being penned up  takes away one of my coping behaviors.. also makes my dog miserable. So just listening to some funky old Neil Young , brewing some ginger for tea and making a grocery list. In the past week I would have had difficulty with the grocery list.

    I have worn out my mind trying to analyze and figure out my long wave that ended up so bad yesterday. Useless mental exercise.  There is simply no rhyme or reason to this.

....Do you feel any lifting of your sx from yesterday? ....When you say that you are watching the storm coming in , do you live next to the sea?. Nova.. I hope you are walking to the market again tomorrow and beginning to think about your spring garden.. Hope you catch a snooze this afternoon....coop

[[Sk...]]

Coop, head pain ? Feels like my brain aches, lilke something squashing my brain whenever I try to think or anything more elaborate than breathe.

 

It has gotten worse, it's because the evening is the worst time for me and with my period all is amplified.

 

So now it is a little bad, I am avoiding doing practically anything . Luckily I didn't have lessons this evening, but I had scheduled a super cheap lesson of Spanish and it was more  than I could  handle which was a pity, these short lesson usually help me distract and cheer me up.

 

But I am telling you, this is my worst period yet, how can t hat be ? Shouldn't we be getting the hang of it at this point ?

[[No...]]

Coop ... I live in Halifax ... on the 12th floor ... so I can see the harbour and basin ... and we are not far from the shore ...

 

I have a pretty quiet day ... and now things are starting to tighten up again ... we will see how far it goes ...

 

I too miss getting out .. haven't been out since Friday ... these deep cold days seem to bother me this year ... never had before ...

 

I don't think there is any way to figure out what is going on in a way we can respond directly to it ... and I too keep on trying from time to time ...

 

Waiting for my wife to get home ... she will be very late tonight because of the storm ...

 

And I will continue to hang around until I need to sleep ...

 

[[Co...]]

Sky, ...we are the same number of months out ..my jump date was Dec 3.. This has been the worst for me too in terms of the last 6 months...I had bad head pressure every day from month 6- 11.. then it got better unail this week. I also can not think or concentrate when the head sx hit me. My head sx are similar to yours,....pressure, zaps and a feeling that someone is pushing down on my brain with thier thumbs...hard.

.....You are right Sky.  This is very difficult to deal with after 15 months. I still believe we will get through these last 6 or so months and get better. I am so impressed with your determination to keep teaching and going to your mother's at Christmas was huge. ..I couldnt have done either.

.....I am starting to feel better today ... but I am afraid to trust it. Going very easy. Health fears are less...Concentration is a little better. We should not have to live like this for 15 months straight..  In a million years I never would have believed that getting off a medication would be this difficult.

    If it doesn't kill us ...we will be so much better by summer...Wishing you a big wide open sunny window...coop

[[Sk...]]

Nova, sounds like a spectacular view, 12th floor and all.

 

I am going to bed, feeling awful. Ironically the cold air helps me enormously, and I try to get out as much as I can, even if just to dump the garbage.

 

Coop, just saw your post, thanks for your kind words. Yes, I do believe you are right, we are almost there, things are going to  get so much better. But it is a crazy situation, why do  we have to  go through this at all ? Well, never mind, that does not matter now.

 

Good night, hope you all catch some breaks. 

[[dr...]]

Hi all....sorry so many are suffering.  I am doing well.  Over three weeks of feeling okay to good.  Now and then something hits me but it leaves.  The last wave in month 8 was crushing.  Hope that is the last of it.  Whatever will be will be though.

    I did have some crushing fatigue, non stop peeing, crazy thirst, and neck pain since thursday.  Come yesterday am my vision went out and I got one of my migraines.  Not bad as all my symptoms except for the head pain(which isn't bad) went away once the visual aura was gone.  I thought I might be entering a wave or I overdid the exercise but each one of those symptoms was listed as a prodrome for migraines.  I have meds for them but am very wary to use anything.

As we seem to say a lot...after benzo crap most other things are a blip on the radar.