18 - 30 Month Plus Group

[[Te...]]

Thanks Drew...I really wish I could talk to Ian.....voice to voice......idk

 

But yes.....I need to get back on track.....

 

Hope your Flight.....goes well.....Congrats.....to you.....hope you have a few days to relax before you go back to the working world...

 

Take it easy...

 

TM

[[Si...]]

So the holidays are fast approaching so I gave in and ate half of a cupcake......now I feel worse....last year I could cheat some...but not now......just had a terrible night...muscles where cramping like every hour jumped from foot to legs, to tight back spasms to tight chest squeezing pain....I thought I was dying or something really bad is going on....I really feel I have some type of muscle disease...due to muscle tight and cramping....never had this prior to jumping...sorry but ive been tested twice in these last two years for ALS....and several other neuro diseases...but my muscles are getting tighter and tighter....it's hard to breath,eat,and really I can't cry my muscles behind nose get so tight I can't breath when crying

I'm afraid I'm not going to heal...due to no windows and I'm getting worse

I sound so negative...Im really sorry....I want healing...any little sign would help me push through this...but when I feel ths bad to make me think I'm going to die.....it's so not right...

Gosh a root canal took me down with clonazepam.....should make a song...how stupid it sounds but it's what happened....idk

TM

 

TX enjoy the cupcake! Sometimes I do something I shouldn’t and just plow ahead because we can't live in total misery. We deserve to have some type of joy once in a while, even if it is a cupcake. 

[[Mi...]]

Morning All,  Do I dare say my 20 day wave is lessening? The air doesn't seem as heavy yet? Idk I have only been up for an hour or so, fingers crossed I will get out of this before the holiday hits. I have to travel next wknd which is stressful enough for me to leave town, with out the added wave!  Oh am I praying hard this morning... I have company coming this wknd! My brother in laws family. They adopted 4 boys this year so I am a first time Aunty and they are headed down to spend the wknd... Plus my son has a hockey tourney in town all wknd.  And, My hubby and I have our turn for volunteering, 3 hours in a penalty box. Oh boy, That trapped feeling. The air is getting heavier just thinking about it. Lol!  :'(

 

Good thing they have a medic and ambulance  on stand bye at the rink in case the hockey boys get hurt.  With that heart thing they can shock me back if needed

 

 

 

Well fingers crossed I am off to get grocerys for the whole army of guests this wknd...

So I better do some yoga and breathing and try my hardest to stay in this mind frame.

It's going to be a interesting wknd.....  Hopefully not to interesting!  Can you all imagine how bored we are all going to be when we heal.   

Really, I was thinking about that last night. I wonder, after this if anything will really frighten me, excite me? I mean truly a trip to the grocery store is like a haunted house or like riding the biggest roller coaster in the world. Gosh even getting a pkg delivered or a walk to the mailbox can be a clip straight out of a horror film. At least for me during a wave it is still like this... 

I mean really can you imagine how utterly strong and un breakable we will all be at the end of this! 

 

 

Six days ago I stubbed my toe like really bad worse than ever.  It's hurts to walk ect....

 

Well,  I had a apt with a foot doctor for a ingrown toe nail the other day.  He saw my foot and said yeah we gotta get that toe nail off....  It's infected so he took a tiny portion of it off to relieve some pressure and said to soak it in Epsom salts for two wks and come back after the holidays and he would remove it!  We had to argue a little for him to do it with out sedation, pain med ect...  But he finally agreed!  Right before I went to get off the table, he asked how long I have had the broken toe for!  Broken toe? , I said? What broken toe? Lol!( I guess my little toe is broken) So yeah, we all are so much stronger than we know!  I told him I had stubbed it a few days prior! And he replied well you are right, you are good with pain! I laughed to myself and thought you have NO IDEA, THIS TOE DOESNT EVEN TOUCH REAL PAIN!  I had so many other muscle pains ect with this wave my toe wasn't even on my radar.....  Lol.

When I got home I casually told my hubby that I must have broken my toe when I stubbed it a wk or so ago! His jaw dropped, he said, what? You  must have broken your toe? Um, honey doesn't it hurt?  I just giggled and said well yeah but it definitely isn't in my top 5 pains for the day so I guess I really haven't thought about it!  Lol! 

 

I thought that might make someone laugh this morning.....

 

Hope you all have a wonderful wknd. 

And, thank you all!  The friendships I have found on here.  I wouldn't have gotten this far without you all! 

 

 

[[...]]

Well my brain is not in a good way at the moment.  So spaced out and feels like my nerves are screaming yet I’m totally exhausted so yes I have been in a wave these last few days. It’s one of those I’m scared of everything. I’m just hoping I may get a break this evening as that is when I feel better if I’m going to. I had another telephone con with my mother that freaked me as again she was negative. I had to say I can’t do this as I have enough with my own problems and was struggling. Of course I then felt guilty and cried buckets. I’m really low at the moment and also jittery. Yes Christmas is adding to this fear and worry. Somehow it feels worse than last years. I’m so scared I’m going to ruin it. The loss of confidence is astounding.

 

Hope everyone else is doing better.

 

Jen, so pleased you feel better. Can I ask, did or do you have any problems with your eyes? Mine at the moment feel blurry and wobbly. It’s so disorientating

[[Mi...]]

Yes Marj,  my eye sight has always been 20/20!  UNTIL THIS JOURNEY. I sometimes have problems focusing, bury vision, and seeing the score on the scoreboard at my sons hockey ect....    It comes and goes. It's getting less and less or maybe I am getting more and more used to it, who knows.  In all honesty if I don't have high anxiety, don't have a stoned feeling, and my GI sx aren't hitting a all time high I am ok! I guess I have just let the rest go.  My anxiety is the worst I think MOST of the time that's really what sets off the stomach pains, throat closing sensations, air hunger ect....  So if I am not dealing with that I call it a great day!  Blurry vision and all!  Isn't it amazing what some of us call a great day?  Sorry you are waving today I hope the evening brings you some peace! 

My hubby and daughter were both home this wk with the stomach flu, yuck...  My tummy is starting to go round and round! But you know what, I don't really even care. The stomach flu has nothing compared to the waving benzo flu! Lol, I say bring it on......  (Would so prefer not to have it although)

 

 

[[dr...]]

I'm delayed on my last part of my journey home. Will be 21 hours total.  So exhausted but doing it one leg at time.  Should be home in two hours.

 

I laughed at your broken toe story.  I passed the biggest kidney stone the ER ever saw passed...well it got stuck at the end of the process if you know what I'm saying.  Lol.  They said they couldn't believe I didn't pass out from the pain.  I told them I felt some pain for the last few months but nothing worse than usual. 

[[ca...]]

Sorry to come in and rain on the parade here.  All this lovely talk of weddings and vacations is amazing and i strive to be able to write about my own adventures some day.  For now, i am struggling.  Im still having issues with memory and the darn awful monophobia.  How do i get over this one?? Any tips?  The minute i'm alone my heart starts skipping beats and i run around like mad.  Ive been home alone for short periods but that isnt reward enough for my brain to realize im okay.  I think having people around is a form of distraction and thats all ive been doing to survive, distract.  Once the distraction is gone,  panic sets in.  Please tell me this is withdrawal and not actually me.  I fear this is the normal me becus i seem to do okay with little anxiety when everyone is home but once that dynamic changes,  so does my thought process.  It effects my sleep if i know everyone is gone in the morning.  Ill even dream of it and wake every half an hour.  Im exhausted.

[[Mi...]]

Castillo,  I am so very sorry you are still dealing with this!  I had it pretty bad in acute. I had it bad during the first 6 months. I was also completely agraphobic.  I never even knew there was a name for any of this stuff. As I never had any problems like this before or new of anyone who had.  I promise mine is pretty much gone.  The only reason I say pretty much is because I have had a few bad waves and during them I still really don't like being alone or venturing out.  I think it's mostly due to the wired sx we get. The rapid heart beat, air hunger ect.  It's scary enough to go through those moments let alone go through them alone.  At least that's my take on it now that my head is more clear.  I no longer mind being alone.  Some days I enjoy it. Other days in a wave I have noticed that when my hubby gets home I am much more relaxed.  I honestly think it's a normal reaction to what we are going through. 

 

[[...]]

I'm a mess today. Not done anything. Cement head, total exhaustion and now my family (mother) is starting to tell me it must be something else.  :'(

 

So low

[[Mi...]]

Marj,

 

If you can look back to before the benzodiazepines!  I know it's hard to when your mind isn't functioning like it should!  But IMO this takes longer than ever imagined!  Trust in the process! Call IAN!  I think your in a wave!  You can do this!  Family members and anyone else that hasnt went thru this process they just don't understand...  I would probably say the same thing if I hadn't experienced it.  I know it is benzo withdrawal for CERTAIN in my case!  I never had these problems before.  And I could tell with every cut I made during my taper.  For me it's not the question, is this post benzo withdrawal?  It's how long? It's how well will I get? 

 

Please don't listen to others opinions. Especially those who haven't been through this.  Even those you have! It's nice to have the support but listen to yourself.  You know deep down what makes sense and what doesn't for you.....

[[Te...]]

Do you all live where you can call Ian.....Jen you  live in WI? I wish I could call Ian....but live in US

 

My thoughts....well my husband thinks I have some type of infection from the root canal braking into sinus cavity....I've looked up toxins....herpes....lymes...and geneal toxins from root canals...great

 

Symptoms are all sorta the same....just don't think clonazepam could cause this much teeth pressure.burning mouth...muscle spasms...and other nerve symptoms for this long...just so confused

There's days when I believe symptoms are benzo related and then there are days like today where I just can't believe it's benzo....just cry and want to scream...for some little pain relief break...how ever small..

 

You guys are so strong...and you all seem full of positive advise....this really means so much to me...

 

Hugs!

TM

[[so...]]

Marj,

 

Giving you a big hug.  This is all WD and it is taking too frigging long to heal.  I'm getting angry at this process, but it's getting me nowhere.

 

Nothing else is wrong with you, sweetheart, I promise.  People around us say dumb things because they don't know what else to say.

 

You are going to be fine when this is over.  I'll share my warm blankie with you in the meantime.  We are all right by your side.

 

Love, Sofa

[[Mi...]]

Texas,  No I have never talked to Ian. I just know Marj does.  I live in the US, Minnesota.  I guess if I were you what I would try to figure out with the mouth pain..... 

Is the mouth pain and mouth issues the ONLY sx you have?  I only say this because it's the only thing that calms me down about my horrendous GI issues....  I have seen specialists, docs, and my naturopath ect concerning my GI, reflux, ect...  And I know and truly understand the pain and fixation on a physical sx.  But, when I look at ALL my sx, somehow it calms me down.  I know it sounds stupid to feel better about my tummy because my vision is still sometimes bad, my anxiety flares still to a ultra high state, my throat tightens still on and off! My heart still feels like It's beating 200 bpm occasionally.  I sometimes feel stoned ect, ect, ect.....  When I look at all of this it brings me some peace of mind.  I know it's crazy but it does.  Because there is like a zero chance that I all of a sudden have a tumor in my brain affecting my site, throat cancer, heart disease or some kinda blockage, a major psyc problem causing my anxiety and total personality change, and Of course stomach cancer or what ever else DR Google diagnosis !  The latest being esophagus cancer, lol!  When I really look at ALL of this truly really look at it all, I kinda giggle and can laugh at myself through the tears and REALLY KNOW ITS BENZO RELATED, I mean it's just impossible to have all of these cancers form and ect.....  I was super healthy 4 years ago, had a experience with heart burn, went to doctor, was treated for anxiety took benzos started losing my mind panic attacks ect...  Got off of benzos and now have 5 different cancers and a bad heart!  It's just not possible right? 

 

And, I really do know and understand what your going through! I had my belly problems pre benzo. But on a much smaller scale.  Just like your teeth issues...  I have seen specialists just like you have and everything looks normal.  And yes I have lost faith in doctors so most of the time when they say your tests are perfect I still wonder what they have missed, lol. 

 

But then that's when I have to dig deep with in. And, look at the whole picture, all of my symptoms.  That's when I giggle and laugh through the tears and realize exactly what it is!  Then I try to find a memory of a wonderful happy pain free sx free peaceful time.  A time before the pills...  The more memory's the better!  And then without a doubt I know. 

 

(I CAN SEE THIS NOW BUT DURING A WAVE ALL BETS ARE OFF! Just a FYI....  So don't get down on your self if you can't connect with this logic right now! Just three days ago I couldn't and was completely convinced my throat was going to close!)

 

But if you can,

Try it!  It may sound corny and dumb but give it a whirl!  The only person who can answer your question, give you a minute or two of peace is you! Because in the end the only opinion that matters to you mind right now is yours!

 

 

[[ci...]]

Miss Jen,  Right on!

[[bi...]]

Well I am signing up for this group , and my name is Bill.

 

[[Te...]]

Thanks Jen....I do this thinking of why the tooth pain is so intense along with 24/7 bad taste...must be some bad toxins releasing making my other symptoms...if I could just  get a partial window ....it would make sense to your theory...it would so help me with the logic thinking....but I've never had one...which makes me wonder....only thing that has lesson is mental issues...which is huge...but I feel I have so many intense symptoms ....really feel I'm always in the worst kind of wave...no breaks....sounds like you get good breaks from pains...to help see improvements ...I don't get this...i have six symptoms terrible symptoms .....24/7...that's why I struggle...all others cycle..

 

So sorry...to sound negative....your right I get really down with myself....so many others are seeing improvement...2 Years here...not much at all....when a new symptom unfolds it gets the best of me...on how to mange the pain...I'm really over loaded with pain....no breaks...to much pain...guess I can't handle all the pain...that's why I post ...just don't know how much longer I can handle all the symptoms of pain...I did chemo seven years ago ...that was nothing compared to this ongoing every minute of pain...for two years..

 

Sorry ...everyone if i sound like DebbienDowner....on post....24/7 nerve pain....is the worst ...nothing Advil can help

TM

 

 

 

[[Mi...]]

Texas,    Don't be sorry!  That's what this group is for!  😃.  Your forever window will come!  Hey the mental sx lessoning for you is a wonderful thing!

 

[[Mi...]]

Morning,  I have a question for you all.  Who can handle a glass of wine?  I haven't tried to yet! And I really really really want to.......... Any feedback anyone?  I am just confused I have read a few success story's where they still had there nightly glass of wine.  I will be two years off in February! Like 6 wks away.  Just wondering who on here allows themselves a glass of wine and your experience from it, please share?

 

 

Hi Bill,  Welcome...  This is a great group of people!

[[La...]]

Morning,  I have a question for you all.  Who can handle a glass of wine?  I haven't tried to yet! And I really really really want to.......... Any feedback anyone?  I am just confused I have read a few success story's where they still had there nightly glass of wine.  I will be two years off in February! Like 6 wks away.  Just wondering who on here allows themselves a glass of wine and your experience from it, please share?

 

 

Hi Bill,  Welcome...  This is a great group of people!

 

Hi jen. I am 23.5 months off short term lorazepam use (1mg). I still have severe alcohol sensitivity though not as extreme as in the past. I test myself by trying 1 glass of wine or beer every 3 or 4 months. At prsent 1 glass feels like the equivalent of 5 and induces sleep disturbances and mild but unwanted sxs. Feels like a moderate hangover the next day....or 2. Hard to believe, but i can live with this if necessary as i am mostly all back to normal. Everyone is different. Try half a glass and see what happens.

[[...]]

Marj,

 

If you can look back to before the benzodiazepines!  I know it's hard to when your mind isn't functioning like it should!  But IMO this takes longer than ever imagined!  Trust in the process! Call IAN!  I think your in a wave!  You can do this!  Family members and anyone else that hasnt went thru this process they just don't understand...  I would probably say the same thing if I hadn't experienced it.  I know it is benzo withdrawal for CERTAIN in my case!  I never had these problems before.  And I could tell with every cut I made during my taper.  For me it's not the question, is this post benzo withdrawal?  It's how long? It's how well will I get? 

 

Please don't listen to others opinions. Especially those who haven't been through this.  Even those you have! It's nice to have the support but listen to yourself.  You know deep down what makes sense and what doesn't for you.....

 

 

Thanks Jen,

 

Yes, before benzo's, I was not like this. Yes I've had some struggles, but basically I was comfortable in my own skin and felt I'd strengthened by my struggles... divorce etc. I'm going through a losing patience phase coupled with a hard wave,oh and of course Christmas. It's just me and my kids and I feel guilty about being flaky, sick, non functional and fragile for so long. I used to be independant and have a go at anything. I know I am lucky to have Bristol, the only thing is the reassurance is forgotten by the next day, they even acknowledge this.

 

Yes I know what makes sense, until a severe wave hits.

 

hope your weekend went well 

[[...]]

Marj,

 

Giving you a big hug.  This is all WD and it is taking too frigging long to heal.  I'm getting angry at this process, but it's getting me nowhere.

 

Nothing else is wrong with you, sweetheart, I promise.  People around us say dumb things because they don't know what else to say.

 

You are going to be fine when this is over.  I'll share my warm blankie with you in the meantime.  We are all right by your side.

 

Love, Sofa

 

 

Bless you sweet Sofa,

 

I too have been feeling angry, impatient and not accepting. That feeds the anxiety and indeed does not get us anywhere. We can't help it though, it's the wretched pills that do this. Can't wait for this to be over for us. thanks for your blankie

[[so...]]

Buddies,

 

Things are changing, not necessarily for the better though.

 

My 4am cortisol wake up call arrives at 2:30am every morning now.  Oh joy!

 

I'm in a 48 hour wave cycle now, one day normal sh*tty baseline, the next day hell, the next day normal sh*tty, the next day hell.  Does anybody else cycle every other day?

 

Symptoms are always the same chain gang:  cortisol surging, anxiety, heart racing, heart palps, head whooshing pulsatile tinnitus, drugged feeling and plugged ears.  It's a party.

 

Sofa

[[Mi...]]

Oh Sofa, I am sorry! 

 

I had my own little party tonight at my sons hockey game, ughhh....  They had a tourney and I did great both Friday and Saturday.  Then today they had made it to the Championship game and 15 minutes into it my heart started racing!  It has been so odd lately....  It does go up a bit but never over 90/100 bpm.  But, it sure feels as if it's going to beat right out of my flipping chest! Crazy right?  I sometimes wonder if we are just super aware of our body's?  I can't ever remember feeling my heart beat every single day before this crap drug....?    Anyways, He was so very excited to be in the championship game and I have missed so much over the past two years.  So, I decided to stay.  It was pure torture but I survived the day...  And my not so little guy won his championship tonight.  Went into 3 Over times and a shoot out.  So it was a extra extra long intense game, lol, Ofcourse it was right? Isn't that the way it goes in benzo withdrawl land! 

 

I will tell you I am finding strength in myself these past two years I never imagined I had!  Some days before bed I have to take off my super hero cape,  ha! 

We gotta keep laughing through the tears right? 

 

Well if your days keep flipping on and off again, at least tomorrow should be a good one! 

 

Wishing you all the best Sofa, your doing great!

 

[[dr...]]

On the heart thing ladies....I still can't exercise besides gentle walking.  I had an intense hill climb on my honeymoon and my heart was racing on and off for two days after along w trouble breathing.  This exercise intolerance sucks and reminds me I have a long way to go.  Nite.

[[pa...]]

Well I am signing up for this group , and my name is Bill.

 

Hi Bill. How are you feeling?