12-18 month support

[[Sk...]]

Thanks Nova and Coop, thanks Jenny for being angry along with me!  GRRRRRRRR!

 

Drew, totally feel ya with the drive thing.  Two months ago I did something similar.  Had to bring my father up and back to Boston for an cortisone injection.  The 70 minute ride back I was feeling just like you did.  A speeding highway is not good when you feel wasted on a wave.  It was intense.  Just like everything else though, we got through it without incident.  (because we're friggin' awesome)

 

I have been down in the dumps all day but last hour all of a sudden I feel like I have brain, have patience, have some focus, and of course humor has returned to my vocabulary.  That's what pisses me off, how unpredictable life has been for such a long time.  It's also really strange how we are all so used to feeling "off". 

 

As much as I still say YES to everything, I had to say NO to a wedding next weekend.  Told my wife to take her friend instead.  The last two weeks have been so bad, a huge social gathering all the way out in Boston just didn't seem for me.  I know I could go and "tough it out", but I have nothing to prove to myself anymore.  Would rather just stay home and avoid it until these bad days let up a bit.  With all the "action" that's been coming my way.....in the way of side effects.....I really think I'm close to healing.  I really believe people when they say it gets bad before it gets great. Besides, I would be super disappointed if this horrible non-linear process ended any other way, ya know? 

 

Mike, you really sound great. I do  hope you are right about this last wave being the last, that would be really nice. 

 

Beulah, wd is enough to drive you insane. My allergies have gotten so much better in wd, before, in tolerance, it was nuts !

 

Like you, I have a lot of head pressure and that can really be bad.

[[Co...]]

Beulah.  We are rowing the boat together again today. .As long as I don't speak my cough is less frequent...that helps my anxiety a little. A other poster on another thread posted several months ago that ducking an Altoids peppermint ( or 2 at a time) really helped her 'can't breathe' feeling...they are so strong...the same sensation as walking I to -20 weather. O haven't tried it yet but I am going to. 

....I am so sorry.  for all of us who are suffering through this wave.. it just seems so brutal and unfair.. we have worked so hard and endured so much.  and been so faithful to the process. I know now how Job felt.  I also wondered about allergy. I don't live in a problem area for pollen etc, but I eat raw honey every day that had pollen in it...probably a long shot there but ....

....The Epsome salts baths are helping my muscle tightness, but I am soaking 2/3 times a day.. might as well...I don't really feel good enough to do anything more than take care of myself.. ..My grandson is having an end of the school year event this afternoon.. I am going to tey my best to go but trying not to get in a pressure snit over it..trying not to worry about it al day.  ..I am detached too.  sometimes that's a blessing as it puts a little distance on the obssessive health fears.  Beulah...I  hoping...hoping that this wave has about spent itself.  Trying to visualize better days and what I want to be doing with them....coop

[[Te...]]

Does anyone with breathing problema have problems with coughing ? I was up and down last night ....due to coughing...which makes chest and throat muscles tighter......it's a bad tickle in my throat.....

 

What I guess I'm asking is coughing is hard....I'm noticing all muscles are so tight it's a struggle to cough....I use to be able to cough with no problems...now it's difficult.....

 

Maybe the cough is due to weather....it's been raining in Texas seems like forever...

 

TM

 

[[Co...]]

* please overlook all the spelling errors in that last post.  sheesh....I type on my note 4.. the screen and quirky are decent size but still very small for my thumbs...never thought I would be writing with my thumbs...*

[[Co...]]

Texas, I have been on here crying for 2 weeks about it.  I have a shortness of breath cough...totally lose my breath while talking or eating and that triggers a cough...makes me panic.  I was in doctor's offices 3 times last week....3 different ekgs and a pulmonologist later...all tests are ok..  just whipping my butt....the only thing that is helping me at all is the hot lavender Epsome salts soaks...I have been doing at least 2 a day.  It makes me think I am dying.  .. I am so sorry that you are having this.  Hoping ... just hoping...that's the best I can do today... Wishing you relief from this one .  ..coop

[[dr...]]

good morning all...I did a sleep meditation before bed and slept much better.  Not sure if it helped but it didn't hurt.  Back to normal baseline of healing today.  Just some interesting wisdom/thoughts I picked up during a brief phone chat with my therapist.  He was telling me when I am in the thick of it not to use the mantra "this won't kill me" or "I am not dying".  he was saying we already pretty much know that and it is a very wide gulf between feeling "ok" and "not dying".  Too wide or extreme for where I am at in this process.  He told me to use this mantra which is "this is my normal for now".  Saying this over and over during symptom time won't necessarily lessen what we are experiencing but it will take away any more significance we may want to give them. So if I am walking and am dizzy or my head hurts I just repeat the mantra.  He mentioned that to me before but it is so hard to remember all the tools we have. 

 

 

[[Sk...]]

good morning all...I did a sleep meditation before bed and slept much better.  Not sure if it helped but it didn't hurt.  Back to normal baseline of healing today.  Just some interesting wisdom/thoughts I picked up during a brief phone chat with my therapist.  He was telling me when I am in the thick of it not to use the mantra "this won't kill me" or "I am not dying".  he was saying we already pretty much know that and it is a very wide gulf between feeling "ok" and "not dying".  Too wide or extreme for where I am at in this process.  He told me to use this mantra which is "this is my normal for now".  Saying this over and over during symptom time won't necessarily lessen what we are experiencing but it will take away any more significance we may want to give them. So if I am walking and am dizzy or my head hurts I just repeat the mantra.  He mentioned that to me before but it is so hard to remember all the tools we have.

 

Good to know, thanks for sharing Drew. 

[[No...]]

For the sore throat and cough and sometimes helpful for sinus ... I have been using Cepacol Blue for sore throat and cough ...

 

Not getting any "reaction" from them ...

[[...]]

Marj...how long are your waves lasting?.  Are you getting some windows?.  ..You are at 13 months off?..

....I am so sorry that you are spending your week off from work in a wave. Yes, this is a cruel process. There are so many of us now with breathing issues.  That one has me on my knees right now...You are getting hit with several sx.  Yes, it is the hardest thing we will ever do. .. You have come a long way.  Kudos to you for getting into your garden and going for a walk.  I hope you get some relief during your time away from work.  I really don't know how people go to work in w/d. 

.....Wishing you some sunbreaks.  coop

 

 

Hi coop,  yes I am 13 months and 2 weeks off.  I dont know how to describe my recovery really.  All I can say is I have not been 100% sx free,  just not as intense sometimes to varying degrees and then there are times when I get hit.  I guess they are waves and this one started on Saturday with bad head pressure.  It seems to have eased off this afternoon and i was able to go get a few plants and potter in the garden,  whereas on sunday and monday I couldnt do anything but cry and feel hopeless with lots of pain, fatique and everything else that drags you down.  I really feel totally different right now with just mild crap and a headache. The only thing that is consistant are the mornings ie.  They are so difficult,  where I feel like I am dying.  Sometimes I come home from work feeling ok and others like I am slightly dying; mornings are always the worst. 

 

I want to go to York with my daughter tomorrow and rjght now I feel I could but in the morning...... Who knows. I suppose like everyone going through this,  I feel so fragile and you never know what is round the corner.  So its a case of finding your confidence again and building new resilliance.  Plus I know most have some background baggage that goes with the benzos and mine is grief which I am trying to work through.  Life can be tough hey but we will gain strength from it all.  It just takes a painfully long time.

 

Thank you for being there and taking an interest when you are struggling and keep going,  you are MUCH stronger than you realise. 

[[be...]]

Hi all, I'm catching up to all your posts.

 

The nasty wave is finally moving back out to sea. I can breathe..I can breathe!!!!! 

My head is clearing and I feel a little hungry...I've dined on soda crackers, yogurt, pepto, and Tylenol for two days...time for some real food...mashed potatoes and some creamed chicken sound good to me.

 

Yes coop, this is our healing life...not our healed life.

Hugs.

[[Co...]]

Marj, your mental framework sounds remarkably positive, in spite of grief and 13 months into w/d. You have come more than the 24 month typical solid healing...Very sorry to hear that you are grieving...many good and supportive people here..Glad to see your post.  ...Wishing you some sunbreaks.  ......coop

[[Co...]]

Beulah...SO SO glad that your wave is rolling out..  having an appetite is always a good sign.. Hoping many good days are following ....and healing.  Keep us posted we need all the good news we can get here....and enjoy your mashed potatoes and creamed  chicken....that does sound very good.......love to you  Beulah.....coop

[[Co...]]

Marj...I meant to say.  More than half of the typical 24 months to solid healing.    coop.....

[[Mi...]]

Hi everyone,  so sorry to hear of all your suffering.  This is so tough to go through and cruel,  however sometimes the nicest people suffer the most,  maybe there is reasoning for this and we wont find out what it is until its over and then it will be like a bright rainbow appearing on our horizons.  I too understand how this is hard to see right now as i too am in the thick of it; breathing issues,  painful muscles,  soft tissue,  only its not soft its like broken glass beneath the skin,  especially neck head and shoulders.  Thick fuzzy head like brain has turned to cement. Doom and gloom and to top it all fatigue.  I have a week off work and feel bad and also feel angry that i feel so bad.  Yesterday i felt the same and really low but managed to push myself to take a walk and then do some gardening all while feeling panic.  I managed to lift my spirits and felt ok in the evening.  Bad night and back to everything again ugh!  Cant muster up much energy to do anything and of course the benzo voice is critisizing me. Acceptance is so key to this,  however that is not easy sometimes.  Hope we all feel better soon, like NOW please 

 

Right there, you said it.  So true.  There's a fine line between practicing acceptance (everyday) and feeling defeated.  The later equals depression.  Gotta be positive.  Period.

[[dr...]]

Well all of my symptoms were flaring due to the migraine I got today.  I didn't get the aura but just intense pain for about forty minutes and now it's just annoying.  I know the drill.  Crazy intrusive thoughts two nights ago, crazy ass spike in anxiety, sinus head pressure, nausea and crazy ass  and weird skull crush feelings.  Also the fun DR. 

This seems to be my most recurrent symptom at this point.  I know it's related to withdrawal since I never had anything like this pre taper.

[[dr...]]

Oh...I'm afraid to use that steroid cream on my incredibly itchy calves. Any suggestions on what works to stop the itching and won't rev me?

[[be...]]

Beulah...SO SO glad that your wave is rolling out..  having an appetite is always a good sign.. Hoping many good days are following ....and healing.  Keep us posted we need all the good news we can get here....and enjoy your mashed potatoes and creamed  chicken....that does sound very good.......love to you  Beulah.....coop

 

Hey coop..did you get to make it to your grandsons year end event? Yes..the creamed chicken was good and I can never get enough mashed potatoes.

I wouldn't worry to much about your weight loss because it comes back on when the cns calms down.

I couldn't believe I lost 40 pounds...but I did..I couldn't gain any back till I had some healing from the anxiety.

This is a crazy life for all of us..but it's our life..a temporary life..which will be forgotten in time.

 

Hang in there Coop..one day at a time. Hugs.

[[je...]]

Let's pile on the symptoms . Who has sinus crap?  I do...I do . Just trying to humor my way through this. I really hate this sinus/head pressure symptom.  I can feel a heart beat type sensation in my nose and roof of my mouth. Plus some on and off congestion.  It's amazing how unsteady this symptom makes me feel.  I forget how bad it is until it returns. 

 

Carry on....

 

 

Sinus crap, yep count me in.. I hate this, I feel like I can't get any air in through my nose, is that how yours gets?

Drew, for the itchy legs ive heard coconut oil is good. I heard it works really well.

[[je...]]

 

Beulah--So glad to hear your wave has lifted! Great news!

Coop-- sorry you are still dealing with the breathing issues, mine have come back too. I'm just at the point now where I'm like well if I'm gonna die, so be it...

 

 

Well, my sx are not too bad today but once again I just feel "off" weird and detached. My breathing and sinuses are really bothering me, arms and legs are numb, neck  and shoulders are sore... I think I'm having a harder time this second year with the whole acceptance thing, I feel like kicking and screaming that this isn't fair. Hope your all well, jenny

[[Co...]]

Drew, you didn't have migraines before benzos? .  So sorry you got hit so hard.  Boy, our group is being beaten up ...Are we there yet?... Are we almost there yet?....How far to the next rest stop?.

.....Get exta rest Drew.. ...Tomorrow just has to be a better day for all of us.  I vote benzo off the island.  coop

[[Co...]]

Beulah.  I did go. .I was only present in my body ( not even sure about that) I had all the anxiety sx....head pressure, dizxiness, anxiety/panic and total dissociation.  I was glad I went, my grandson was tilled that I was there...totally worth it!.  Too bad I cant remember one thing about it. At a few points I was just sure that I was going to faint.  But my son who is a fireman/ paramed. was right there so I knew if I was going to die I was in the right place...lol ...I am so tired from just being out to a school play for 90 minutes. I am still swimming in d/r, but that actually shields me a little from the anxiety...I am not worried too much about my weight loss, but I worry about getting some decent nutrition in...however l  do get a healthy smoothie down each morning.  .

.....Beulah, I am so glad you are feeling better ....coop...

[[Co...]]

Jenny, I am in exactly the same place with the breathing...if it's life threatening.. .fine just be done with it, I can't keep up the obssessive fear about it.  I am worn out by the panic it causes.  It has to end at some point.  I go to bed at night hoping I will breathe until morning.  So far so good.  M

....Did you have any of the breathing issues in that window this weekend?....I haven't had a real window in about 2 months, but when I did get windows all of my sx would disappear completely in those few Effortless Mind days..   

...Wishing you so many Effortless Mind days.  coop

[[dr...]]

Jenny-I get all sinus stuff...clogged, runny, and pressure

 

Coop-I started taking benzos at 21 and I only remember getting migraines maybe 2-3 times a year since my thirties. 

 

I've noticed either most of my other symptoms left and I'm only really left w my head stuff which is more noticeable to me or my symptoms shifted all to my head.    My head gets the weirdest pains and sensations lately. When I'm in a stressful situation it's like my brain fries.  I don't remember this sensation.  I've been checked out so I don't worry about it but I have irrational fears about it getting worse to where I won't function.  My therapist says whatever happens I can handle.  It's amazing the fears we have to face and I'm sure my migraine is amplifying these "what if" thoughts. Ugh!  My day was actually low on symptoms until the head pain hit me hate. To my credit I didn't panic and rode out the pain. 

 

I ramble.  Night everyone

[[mr...]]

Oh...I'm afraid to use that steroid cream on my incredibly itchy calves. Any suggestions on what works to stop the itching and won't rev me?

 

Perhaps some shea butter? I bought 100% shea butter in the thick of withdrawal, to help with dry cracked lips, my eyes (the skin around them), my face, my hands, elbows...etc! It worked great for me. I had itchiness on my hands, and the intense moisture was very helpful for it. Greatly reduced the itch for me!

 

I think my period may be right around the corner here...not that you wanted to know that! A few symptoms today...all is well, and will be well

 

Love to you all; hope things are well. Coop, I'm thinking of you lots. I think things will settle soon for you. Off to bed for me!

 

Mrs.

[[Gr...]]

Green,

Yep I could have written your post myself. I called my mom today and just unloaded on her, told her how I can't believe I'm still dealing with this at 20 months- all the anger, frustration, it all just came out. Thank goodness she is very good at just letting me vent. My day today ended up pretty good believe it or not. My sx just went away around dinner time-- my hubby grilled some burgers, we all laughed and talked over dinner, then took a long walk to a park to let the kids play. I start having all these normal, happy thoughts about how I need to get out more, make some friends-- I literally completely forgot about w/d. These sx can change so quickly its crazy! Who knows what tomorrow will bring.. Sorry your day wasn't so great, tomorrow's a new day! Jenny

 

J, I'm laughing. You went from crazy, unloading on your mom, to strolling in the park thinking about new friends.  Yes, it's that crazy!

 

I know this is healing, but it sure is crazy!  And there are a lot of us, BTW, quite a few, so I don't think this is such a rare occurrence, being so messed up so far out, into the second year.  I'd love to know where Big Pharma hid all the studies!