12-18 month support

[[Si...]]

Do all of you find that after a bad wave that you feel you've progressed in healing? I guess maybe I was a little thrown off by having what possibly was a very long wave of five months. Definetly in a terrible wave the last two months.

 

Sig,

I had my most significant healing after my hardest waves.  Month 12 was a biggie.  By 12.5 I had a beautiful window.  All major waves are followed by great healing, great improvements.  When I'm in the middle of a wave, that does not help me!

 

Well here I am wide awake again. I was trying not to get on my phone, but I just lay in bed doing nothing for four hours straight barely moving hoping I'll pass out. I get up and drink some water and wander around the house fora few minutes. I get in our guest room bed so I don't bother my wife with tossing and turning. She can take a nap during the day and still sleep all night. I'm happy for her, but of course jealous about it too. I need to start keeping a journal so I can try and follow my ups and downs. Sorry got the rambling. I'm just really tired of all of this.

 

Siggy, you do need to keep some sort of journal so you will notice the improvements. There are improvements even when it does not seem like it but without a journal I would never have known.

 

How considerate of you to change bed. MR Sky will not let me change bed, he worries something bad will happen to me, he rather not sleep. At one year, I would have been to scared to sleep in another room, I still am, so good for you.

 

Ramble away, that' s what the forum is for. Sorry you are awake at this hour but it's nice for me to have someone to talk to !

 

Take care, 12 months is huge. 

 

Thanks! How very sweet of your husband! My wife is a school teacher and has to get up around 5:30am. I use to get up around 7:30 before all of this ridiculousness started. She likes for me to n in bed with her too, and u try for a few hours when we first go to bed. I just get more agitated as the night goes on. I barely ever missed a night of sleep before going on this garbage. I still can't believe one month of taking this stuff did this to me. Just unbelievable. The insomnia is the worst for me. I can handle the other S/x ok when I have gotten sleep. Just hoping this episode of insomnia passes soon. It always feels like it lasts forever. Thanks for listening. It's been 2-½ months since I came Ian with the flu that started this all back up again. It feels like 6 months though.

[[No...]]

Siggy ... sorry you have had another long night  ... this stuff can be very disconcerting at times ... we can get into a place where nothing makes sense ... and it probably doesn't ... we are in a place we did not know existed until we arrived ... and it is mostly unacknowledged ...

 

Time is our ally ... we get through the days as best we can ...

 

Hope you get some rest ... 

[[Si...]]

Siggy ... sorry you have had another long night  ... this stuff can be very disconcerting at times ... we can get into a place where nothing makes sense ... and it probably doesn't ... we are in a place we did not know existed until we arrived ... and it is mostly unacknowledged ...

 

Time is our ally ... we get through the days as best we can ...

 

Hope you get some rest ... 

 

Thanks, I already know tonight is a wash. I basically almost never fall asleep if ur isn't soon after I first get into bed. There have been just a couple of times I fell asleep by 4am, but that was after being up for three nights straight. I'll be taking a shower around 6:30 and getting ready to drive through Atlanta again to work for another long difficult depressing day. Thanks for responding. I get so bored on these sleepless nights.

[[No...]]

Siggy ... I went through a long stretch of insomnia for a while ... and nothing really helped to settle me down ...

 

After I could handle the TV, I started watching episodes of Antiques Roadshow ... and usually I would eventually nod off ... just slept in the recliner for a while ... helped a bit ...

 

I still spend some nights in the recliner ...

[[Sk...]]

Siggy ... I went through a long stretch of insomnia for a while ... and nothing really helped to settle me down ...

 

After I could handle the TV, I started watching episodes of Antiques Roadshow ... and usually I would eventually nod off ... just slept in the recliner for a while ... helped a bit ...

 

I still spend some nights in the recliner ...

 

Siggy, insomnia is hard, it makes all symptoms worse. I had insomnia  before, it was the reason for starting on this stuff.

 

When I had insomnia in wd, I watched a lot of soothing tv programs, I doubt I was paying any attention, I was tired, but it helped me feel I was not alone.

 

Hang in there, Nova is right time is our ally and will heal everything. Coming on the forum is great. I did not do that, I had read about sleep hygiene and there were many things that I was told to avoid at bedtime and the computer was one of them.

 

When I had insomnia, when I did sleep, the dreams were awful, hope it's not the same for you.

[[Si...]]

Siggy ... I went through a long stretch of insomnia for a while ... and nothing really helped to settle me down ...

 

After I could handle the TV, I started watching episodes of Antiques Roadshow ... and usually I would eventually nod off ... just slept in the recliner for a while ... helped a bit ...

 

I still spend some nights in the recliner ...

 

Siggy, insomnia is hard, it makes all symptoms worse. I had insomnia  before, it was the reason for starting on this stuff.

 

When I had insomnia in wd, I watched a lot of soothing tv programs, I doubt I was paying any attention, I was tired, but it helped me feel I was not alone.

 

Hang in there, Nova is right time is our ally and will heal everything. Coming on the forum is great. I did not do that, I had read about sleep hygiene and there were many things that I was told to avoid at bedtime and the computer was one of them.

 

When I had insomnia, when I did sleep, the dreams were awful, hope it's not the same for you.

 

I only had bad dreams right after going through acute. I tried all the sleep hygiene stuff. Nothing seems to work other than my brain just being ready. I just can't get over that I slept great for months, got bad, got good for three weeks and then bad again. UGH! did any of you go back and forth with bad/good/bad sleep? Did it ever fully resolve?

[[Sk...]]

It may be just part of your waves, it may be how your waves express themselves. If you did sleep  earlier it should come  back soon enough.

[[Si...]]

It may be just part of your waves, it may be how your waves express themselves. If you did sleep  earlier it should come  back soon enough.

 

Thanks I REALLY hope it's soon and lasts longer than three weeks.

[[be...]]

Morning all,

 

Yesterday was bad for me..but I forget how bad...I think that's healing.

I've always been a morning person and I still am..but just not as functional in the mornings...so I've decided since I feel better in the evenings I will do my walking, light cooking and cleaning and whatever I feel like needs to be done. I know cortisol lowers later in the day and night so that's probably why I feel more functional.

 

We have some pretty strong storms moving in later today and I can't believe how sensitive I am to weather changes..still.

 

Just another day in paradise!  Keep healing!!

[[...]]

I think it is time for me to come on board as I have been a lurker too for a while, watching all of your progress with hope.

 

Today I am 13 months off and struggling with losing faith that this will get better. I have never had a window that goes beyond a day and some days where things are not as intense, however every morning since all this began has been a struggle. I have had some good days and Friday was a decent day in that I felt different, as if I could feel healing, then bang the weekend has been worse than ever. I was wondering if anyone can relate to rigid muscles in neck, shoulders and upper back? I do get this all over at times but this area can be hell at times. It makes me wonder if I have some permanent damage somewhere to cause so much pain and discomfort. Today I feel as if I cannot breath properly, the pain is now in my face, and my veins feel like they have poison running through them. Fatigue is ridiculous, I could be knocked down by a feather. So sorry to moan on about some of my symptoms,  you all have been suffering  for such a long time and I love the way you encourage each other on this cruel and painful journey. I just keep putting one foot in front of the other until the other side is reached and trying to keep faith that it is waiting.

Wishing everyone continued healing 

 

[[Sk...]]

Morning all,

 

Yesterday was bad for me..but I forget how bad...I think that's healing.

I've always been a morning person and I still am..but just not as functional in the mornings...so I've decided since I feel better in the evenings I will do my walking, light cooking and cleaning and whatever I feel like needs to be done. I know cortisol lowers later in the day and night so that's probably why I feel more functional.

 

We have some pretty strong storms moving in later today and I can't believe how sensitive I am to weather changes..still.

 

Just another day in paradise!  Keep healing!!

 

Beulah, sounds like a great plan. I was never a morning person but now, in wd, I get everything done early in the morning, go figure !

 

We have to do what can keep us going, work with what we have. It's great that you can keep the house clean, there are some days I have a hard time making the bed. I keep Baylissa's book open to the caregiver chapter and show the explanation of how hard it is for us to do simple tasks to mr Sky. I can do many things, but small house things still feel like rocket science to me !

 

Sorry about the storms, they can be scary for us.

 

Heal on !

[[Fi...]]

Hey Marj--welcome!  I've had a lot of back pain just as you describe.  I've also been coming off of opioids and I've wondered if this is where the expression "monkey on my back" came from.  Sometimes it just feels like there's something back there.

 

I took a definite turn for the worse just where you are now.  Suddenly had a whole month of fatigue like I hadn't had up to that point.  It got better though, and now, at 20 months, I'm having way more good days than bad.

 

Funny, also like you, I only logged on at the same point you did.  I'm really glad I did because if I hadn't found out that other people often take a turn for the worse (temporary ) at that point, I might have really been doubting that this was all just withdrawal.

 

Hang in there--you're going to get better!

[[...]]

Thank you for that reasurrance FJ. Lovely to hear you are getting better days, it must feel  wonderful 

[[Fi...]]

Yes, it does!  Hang in in there.  This drags out a ridiculously long time, but we're all on the right path!

[[be...]]

Morning all,

 

Yesterday was bad for me..but I forget how bad...I think that's healing.

I've always been a morning person and I still am..but just not as functional in the mornings...so I've decided since I feel better in the evenings I will do my walking, light cooking and cleaning and whatever I feel like needs to be done. I know cortisol lowers later in the day and night so that's probably why I feel more functional.

 

We have some pretty strong storms moving in later today and I can't believe how sensitive I am to weather changes..still.

 

Just another day in paradise!  Keep healing!!

 

Beulah, sounds like a great plan. I was never a morning person but now, in wd, I get everything done early in the morning, go figure !

 

We have to do what can keep us going, work with what we have. It's great that you can keep the house clean, there are some days I have a hard time making the bed. I keep Baylissa's book open to the caregiver chapter and show the explanation of how hard it is for us to do simple tasks to mr Sky. I can do many things, but small house things still feel like rocket science to me !

 

Sorry about the storms, they can be scary for us.

 

Heal on !

 

 

Sky, I can't keep the house clean by myself...I have the help of my husband. I can do things like some laundry,loading the dishwasher, dusting..light housekeeping. I can't vacuum yet or move anything that weighs over a few pounds. I'm still very stiff and have trouble bending...plenty I can do and plenty I can't. I don't feel as stiff in the evenings and can do more.

 

Yes...last year at this time everything I tried to do was rocket science...just kept my head above water.

We're getting there!!

[[Gr...]]

Nova...you have been through it. I totally agree, not only do individual meds have sx, combinations of drugs complicate the whole mess. I gained 10 pounds within 6 weeks of going on ativan...and much of it was fluid. I could see the swelling in my face and ankles. I was also taking mclazine for the ear condition . I went off the mclazine as I thought the ativan was the be all and end all for vertigo and anxiety ( which it was.  until about 6 weeks in when it wasnt)  I dropped the 10 pounds and the fluid when I dropped the mclazine. I tried to tell my ENT this.  He practically rolled his eyes at me. " fluid retention and weight gain is not a side effect of either one of the drugs you are taking".  Right in the patient insert for mclazine....fluid retention. ...also dizziness.  wait, I thought I was taking the mclazine to reduce vertigo.

    I agree with you and Beulah.  We are not stupid.  We know our bodies ( we live in them 24/7)  Now if I feel like something is causing me a side effect I believe myself . When I told my physician that propanolol caused me increased palpitations he insisted that couldn't be as it is often given for arrhythmias.  I insisted on a medication change.  sure enough switched to atenolol for b/p spikes and palps calmed down .. We know what we are talking about.

..  .That was a terrible circular misdiagnosis and wrong rx ..one after another in an awful loop . I am sorry that happened to you. I honestly believe that doctors do not know anything really about the drugs they prescribe.

  ..I hope you are having a better day . .. Yep, carry on...coop

 

Coop, how true, but if they don't know anything about the drugs they prescribe, they really have no business prescribing them, do they ?

 

 

Here, same old, same old. Only change the heat, and that affects me big time.

 

I had a lesson and the heat got so bad, my head started spinning and I got incredible nausea. And I had the webcam, so I had to keep on faking.

 

I had some bad moments today too but now I am ok. 

 

Before you guys say anything, AC in my house is not an option, electricity is very expensive in Italy and I can't afford it. BUt I really would need it.

 

I get tired easily so I am listening to my body very carefully and try not to push myself at all. Just my lessons and naps- a hamster on a wheel' s life. But hamsters are happy creatures too.

 

Today, we went to Ikea. I have to tell you that pre cold turkey, I would have done anything to avoid Ikea, I hated every single thing about it. Now, it's fun, go figure. So, I wonder, is this me or is it wd ? 

 

We bought a few things, small things, we bought an orange juice , freshly squeezed, it was the tastiest thing in this world. Now, I am lovingly looking at our purchases.

 

In the car, there was a moment in which the heat was too much and my heart was hurting and I could not breathe. I grabbed my thumb in my hand, as I read in Baylissa's book, the Jin Shin Jyutsu technique, while mr Sky turned on the AC and I did some breathing exercises till things got better.

 

So, tomorrow was ok, tomorrow probably will not and so on. And I will get tired, mentally and physically and I will despair, but things are getting better somehow.

 

My thoughts ramble, my memories crowd my brain, but if I can squeeze a smile in, here and there, it's ok.

 

So glad to hear HealingHope is getting so well that wd seems far away. And I think Drew might be getting better, who knows, he might be next ?

 

Speak later . 

 

Sky, I relate :  is this me or is this withdrawal?  I think I ask myself that question five times a day.  Time will tell, I guess.

 

I use the pulling of the fingers, and the direction to the Unconscious Mind works well for me, when panic descends.  At least we have a couple of tools.  when this wave rolled in, I had nothing, I was getting killed.

 

I was reading LostDog last night -- he's my goto lately.  And I'm hanging on every word, analyzing, the way bible scholars interpret scripture!  but he said at month 18 he was still struggling.  It looks like 22 months is the number for a lot of people.

 

I know I shouldn't be hanging my hat on that, bcuz if M22 comes and goes and I don't get better 'til 24 or 25 or 26, am I setting myself up?  I don't know.  I know I need to hope, to look into the future, because living in the moment is not doing it for me right now!

 

Nova, my lotto number did not come up today either! :'(

 

Coop, hope things are quiet for you today, and that you had a lovely lunch with the kids and grandkids

 

Hope everyone had a nice mother's day.

 

Sue, I should know better than to make a joke in wd.    I was talking about feeling well, when you do, do you wonder if good moments are wd  too ? 

 

Luckily this is the one symptom I have lost, I am sure that whatever life throws at me these days, is wd.

 

Sky, throughout most of this I have zero, zilch, sense of humor!  People close to me are confused by that.  I used to laugh a lot!  For me, this is part of withdrawal, everything is very heavy, very serious.  I get breaks where I can "lighten up already"! 

That has to be a sx. 

 

Re housework.  Not happening.  I manage kitchen and bathrooms, but let a lot go, it's absolutely impossible.  It's easier to pick up my keys and go.  My benzo brain loves rides in the car

[[Gr...]]

Do all of you find that after a bad wave that you feel you've progressed in healing? I guess maybe I was a little thrown off by having what possibly was a very long wave of five months. Definetly in a terrible wave the last two months.

 

Sig,

I had my most significant healing after my hardest waves.  Month 12 was a biggie.  By 12.5 I had a beautiful window.  All major waves are followed by great healing, great improvements.  When I'm in the middle of a wave, that does not help me!

 

Well here I am wide awake again. I was trying not to get on my phone, but I just lay in bed doing nothing for four hours straight barely moving hoping I'll pass out. I get up and drink some water and wander around the house fora few minutes. I get in our guest room bed so I don't bother my wife with tossing and turning. She can take a nap during the day and still sleep all night. I'm happy for her, but of course jealous about it too. I need to start keeping a journal so I can try and follow my ups and downs. Sorry got the rambling. I'm just really tired of all of this.

 

Siggy, don't fight insomnia, you won't win.  fortunately, you have a guest bedroom. Find a way to deal with it, with acceptance, and it will pass when it passes.  This is one symptom I got good dealing with.  Stay away from all stimulants past a certain time.  That's the only thing that really helps.  And supplements.  I do take melatonin and magnesium and Sleep Tonight, all good products, but they don't work when I'm in an insomnia wave.  nothing does.  I would never recommend a supplement, because everyone here is so sensitive, I just say what I've tried and what I think helped me a little.

There was a very good thread written by Tom N Texas, on insomnia, it wasn't from here, but it made all the rounds.  basically, accept the fact there's nothing you can take to make it go away.  Don't be afraid of it.  Relax and wait for it to pass.

 

this is one of my worst symptoms.  It's slowly getting better  What I've found is lately it's not the quantity of sleep, but the quality, and the quality is improving on its own, with time.

 

[[Gr...]]

I think it is time for me to come on board as I have been a lurker too for a while, watching all of your progress with hope.

 

Today I am 13 months off and struggling with losing faith that this will get better. I have never had a window that goes beyond a day and some days where things are not as intense, however every morning since all this began has been a struggle. I have had some good days and Friday was a decent day in that I felt different, as if I could feel healing, then bang the weekend has been worse than ever. I was wondering if anyone can relate to rigid muscles in neck, shoulders and upper back? I do get this all over at times but this area can be hell at times. It makes me wonder if I have some permanent damage somewhere to cause so much pain and discomfort. Today I feel as if I cannot breath properly, the pain is now in my face, and my veins feel like they have poison running through them. Fatigue is ridiculous, I could be knocked down by a feather. So sorry to moan on about some of my symptoms,  you all have been suffering  for such a long time and I love the way you encourage each other on this cruel and painful journey. I just keep putting one foot in front of the other until the other side is reached and trying to keep faith that it is waiting.

Wishing everyone continued healing 

 

Marj, welcome.  I am so happy you've decided to join us.  There is better healing in numbers.  the rigor mortis is very common, most of us have had it in the second year, even many who never had it in the first!  And I can promise you, that little freak symptom will drop away as abruptly as it came! 

 

Year two is better in many ways, but has its own challenges.  I think a lot of ppl give up in year two because they're afraid something is wrong and they're going to be like this forever.  This is not true  we are all healing.  we will all recover. 

 

there's a lot of information and support here.  welcome.

[[No...]]

Hi Marj ... nothing you describe sounds unusual to me ... been there with the same stuff ... reassurance helps ... and lots of patience ... I have not been able to find a stable supply of patience yet, so I just go with what I have today ...

 

You are doing well ... it may just not feel like it at times ...

 

Be Well ... 

[[No...]]

Hi ... well ... this is mostly an intermittent lousy filled day ... up and down and round and round ... sure wish it would make up its mind ...

 

I have been waking up most mornings feeling pretty chipper, then someone turns on the symptom tap ... I need a better plumber ... 

[[Si...]]

Do all of you find that after a bad wave that you feel you've progressed in healing? I guess maybe I was a little thrown off by having what possibly was a very long wave of five months. Definetly in a terrible wave the last two months.

 

Sig,

I had my most significant healing after my hardest waves.  Month 12 was a biggie.  By 12.5 I had a beautiful window.  All major waves are followed by great healing, great improvements.  When I'm in the middle of a wave, that does not help me!

 

Well here I am wide awake again. I was trying not to get on my phone, but I just lay in bed doing nothing for four hours straight barely moving hoping I'll pass out. I get up and drink some water and wander around the house fora few minutes. I get in our guest room bed so I don't bother my wife with tossing and turning. She can take a nap during the day and still sleep all night. I'm happy for her, but of course jealous about it too. I need to start keeping a journal so I can try and follow my ups and downs. Sorry got the rambling. I'm just really tired of all of this.

 

Siggy, don't fight insomnia, you won't win.  fortunately, you have a guest bedroom. Find a way to deal with it, with acceptance, and it will pass when it passes.  This is one symptom I got good dealing with.  Stay away from all stimulants past a certain time.  That's the only thing that really helps.  And supplements.  I do take melatonin and magnesium and Sleep Tonight, all good products, but they don't work when I'm in an insomnia wave.  nothing does.  I would never recommend a supplement, because everyone here is so sensitive, I just say what I've tried and what I think helped me a little.

There was a very good thread written by Tom N Texas, on insomnia, it wasn't from here, but it made all the rounds.  basically, accept the fact there's nothing you can take to make it go away.  Don't be afraid of it.  Relax and wait for it to pass.

 

this is one of my worst symptoms.  It's slowly getting better  What I've found is lately it's not the quantity of sleep, but the quality, and the quality is improving on its own, with time.

 

Thanks Green. Yes I know all that I should do, but I just have a hard time controlling the frustration. I know I'm suppose to just leg go, but it's so hard when it's ongoing. Especially since it seemed to be going my way for a few weeks and then I get hit again.

 

I don't do any other real prescription meds. I can't use antihistamines as I have a paradoxical reaction to them. They are like taking speed for me. DEFINITELY not what I want LOL. I was given Hydroxyzine when I dropped the Lorazepam and it maybe helped with the crazy anxiety, but did nothing to help me sleep. Also was prescribed Clonadine patch, which I hated. I put it on for 16 hours and it dropped my BP way too low (for some reason the Pdoc started me on the .2 patch instead of .1 ). Other things that I've had varying success with are acupuncture and tart cherry. I tried melatonin and I don't think it helped much. Just made me feel bad. I took some magnesium too for a few days and it seemed to help, but then seemed to turn on me also by the fourth day and made me feel terrible. We use lavender oil a lot. Also have a linen spray for the bed. I can't really see putting myself on an A/D or low dose antipsychotic. I'll just have to tough it out and hope it clears up soon. I'm trying to keep my spirits up. Having to try and concentrate on some really complicated drawings. I work as a graphic designer for a sign company, so have to draw using a lot of math and then notate everything (color, materials, sizes, mounting, etc.).

 

Thanks again for all the support everyone. It's really really helpful to have some reassurances.

[[be...]]

Hey Nova, that's the way most of my days are...round and round.

I get up in the morning and feel pretty good...by mid afternoon the symptoms start rolling in...then come evening they go back out to sea.

 

 

[[No...]]

Beulah ... yep ... not much else to do ...

 

On the bright side ... it hasn't snowed in three weeks ... 

[[be...]]

Beulah ... yep ... not much else to do ...

 

On the bright side ... it hasn't snowed in three weeks ... 

 

What month do you start having spring temps of 60's and 70's? I know you're looking forward to spring.

[[Co...]]

Siggy. .I use tart cherries too...I use about 1/3 cup in yogurt and have it before I go to bed. I do think they help. Sometimes some tart cherries with a few sliced of turkey.

....You are really doing great at resisting the otc medications and prescribed sleep meds. I have bouts of insomnia as well... I agree with Green. ...trying to let it go has been my best strategy, but it's hard if that is one of your more worrisome sx. I watch a lot of mindless tv in the middle of the night.  Read on BBs ...wrote on BBs to anyone else who is awake and on the forum. ...It's a tough one, but it will pass in time. I am 18 months out and mine is getting much better..I think 4 or 5 nights out of 7 I get about 5/6 hours of decent sleep. ...This will get better Sig....coop