This is wretched....and now I'm going BACKWARDS??*&^%*

[[je...]]

I am feeling so tired now I can hardly type but I want to cry myself to never wake up land.  I am NOT suicidal but so discouraged.  I have been tapering from clon. as you can see from the thing at the bottom of the post (my info stuff) and I have been going small cuts....watching my body....sleeping even during the cuts (I may have one or two bad nights but then its back to sleep and be ok and the bad nights are maybe only three four hrs...not ever none like c/t) I have been tired during the first two days of the taper then get energy toward the end of the week and make a cut...I have never set it in stone to HAVE to cut ...it was watch my symptoms and let my bod lead.  Good good so I think...Make the cut on Fri....Im not feeling good sat at all....very nauseated but i know to wait it out....no panic...my head is pounding...i know to wait it out....its a bit more intense than usual but NOT like c/t at all.....my vision is a but blurry at times but i get those little windows and i know its ok...wait it out.....I get bitc** as heck at everything but thats common to to the first day or two.....wait it out...relax.....lay in bed...i do...but my head POUNDS and squeezes ten times worse as day goes on when i lay down...its bad when sitting but more than i can bear laying...i meantion to hubby...i take an advil....nothing.....about 10 in eve i go to use washroom...this is last I remember....i remember sitting on the tiolet looking at the light wondering if it was flickering or if it was me.....next thing i know i wake up in the hosp....and ive been given a nice ambulance ride...had FOUR seizures that the paramedics and dr's couldnt get to stop so i was given VERSED ....im in brain fry today and feel like my tongue is broken as its bruised and bitten all to heck......good news is they attributed it all to benzo with drawl and tapering too fast....no other drugs given as i was honest about what i was going through and my hubby was INSISTENT they use anything but a benzo to help me but in the end dr won out and said hed use versaid as it wouldnt last long and dose of versaid was 5 mg... its only one tenth to one twenth the strenth on clon...but sh**!!!!!! I'm having seizures now? WTF????  I dont talk like that and im bawling here but im so frustrated here im mad!  I was doing this like i thought i was supposed to dang it....and i hunted for some stupid dr who would help me and even found one who is good...that was hell going thru that but its good now...and i taper slow.....i cut only 10% or less basically and was doing great and now Im having to go for seizure crap?  I have to see the pharmacist and my dr together to form a "proper taper"....jesus.....now what will they have me do?  I'll go less gladly but i wont add to it......How do i stop seizures?  The dr says i can take atavan when i get the shakes...can you believe this crap?  im in WITHDRAWL YOU IDIOT....I KNOW I GET THE SHAKES.  I KNOW MORE CLON WOULD GIVE ME NO SHAKES.  thats why i shake ......i guess i have to be honest and say i looked around and was cautious about how much time i was on here as to not get bogged down with worry....i try and stay positive.....then throw me a wrench like i seize and now what?  How do you know seizures are coming?  Does anyone else have them?  I hate to bring up ill feeling but I go backto Holly and I'm scared crapless.  I can remember our convo's about her seizures.....and one after the other....I get it now!  Please just keep faith....I am choosing to hang on to that and trudge forward.  I have to scoot.  My eyes and arms are soooooooooo tired.  Im going to lay down.  Thanks for listening and for hope................hope.......remember hope Jen remember hope (note to self)....................Blessings Jen

[[Ti...]]

Jenny--

 

So sorry to hear about the seizures.  Have you had any in the past?  I think of Holly a lot too.  I really liked her and we spoke a lot.  This whole process is so uncertain and scary.  I am going backwards in my taper from cutting to fast as well.  I guess just wait until you stabilize then cut even slower.  You are very close to the end it seems. 

 

Take care,

Tina

[[je...]]

no I have hever had a seizure before let alone more than one or two or three even four....Im content to hold where i am for the time it takes to be stable but it so discouraging!  thanks tina for the reply    knowing someone else has had the "too big a cut unkknowingly" is reassuring to me ....my stupid paranoia now is telling mee every brain zap i get is going to be a seizure....im putting this puter away and going to try and rest...i said that before i think.lol  this time im off and plodding to the bedroom nighty night in the dead of the day urgh....thanks again for the hope...sick with hope jen (note to self) blessings.............jen

[[Be...]]

How frightening, Jenny! It seems to me you have been doing everything right so no wonder you are so upset about this.  I'm not a doctor but can only guess you had some kind of pre-disposition to seizures.  Are your docs really attributing it totally to w/d and not proposing a brain scan or anything?  I have a niece who started having seizures about 5 years ago and got a couple a year regardless of medication but has gone as much as two years without one as well.  I know she doesn't dare drive a car but she works full time and seems to be doing okay otherwise.  She also says that she gets no warning signs though in your case, I wonder if that severe headache might have been a clue.  I hope you can get some more answers and no more seizures!

[[je...]]

I had a cat scan, O2 levels checked, blood glucose,  and ECG and a ton of blood work when I had them.....I was at home for one with my hubby prior to ambulance coming...then had another one as they went out door and had to stop .....then one in route to hosp and then one in e.r......after final dose of versed I had no more of them....dr was very supportive of my tapering and spoke to my hubby as I wasnt even awake until I was in a room in the hosp...total of about three hrs of in and out-ness breathing but not fully conscious my hubby says....she kept testing and testing...assured me my brain was ok....all tests were ok....but the w/d of benzos was very serious and I needed to slow down and stabilize...go back to my last before cut dose and remain there for a while until I was ok...and I had to agree to a consult with the hosp pharmacist (which I havent had yet) to figure a better taper plan if need be.  She was convinced it was the w/d and and simply "my body telling me it didnt have enough of the clon and was needing it to work....."  HERR WORDS......Do I believe her?  Heck I have no clue and I'm so tired I havent the energy to argue.  I'm back to my last dose of .75 and hoping I will be ok.  Just wondered if anyone on here had had seizures while tapering and not necessarily in c/t?

[[pa...]]

Yes Jenny you do.  Follow her advice.  You did,t have this problem before.  Your system could be very sedative, that the tapering, even slow like you have done is too much for your system.  At least follow what she said, weigh it out.  This didn,t happen for no reason,.  Yes, and I miss Holly also.  We connected, pm,d each other  stay in touch.  My thoughts are with you.  Pattylu

[[je...]]

will follow advise and hold.....feel extremely tired and fuzzy.....very willing to hold and take a break .....i dont want to die.....i want to live and if it takes holding and going at the rate my body says ...im in!  thanks for the support patty....

[[pa...]]

Hi Jenny, you won,t die sweetie, you will get through this.  Rest, eat well, go slow.. You will get there.  Hugs, patty

[[...]]

Hi Jen, Yikes!  What a cocktail of meds you were on.  Why were you put on Sinemet?  Were the docs using it off label for a symptom you were having?  Did you taper each of those meds, stopping Feb 9th?  Perhaps the combination of tapering the other stuff in addition to the Klonopin, lowered your threshold for seizures at that point in time.  I am glad that all of your testing came out ok.  Did anyone offer an EEG for you?

 

I had a seizure on day 8 of a cold turkey from a hideous amount of Ativan, so my situation was very different from yours.  I have not had recurring seizures.  One thing I did read, that Sinemet can be associated with convulsions and headaches.  It will probably take awhile to get all of that other garbage out of your system.  You are doing the right thing and please don't feel discouraged to be tapering the Klonopin slowly.  It will be much safer and more comfortable for you, I am sure.  Bless your heart, you have really been through he**.  Hugs to you, Skyy

[[je...]]

thanks sky...i tapered off the sinemet in jan for a misdiagnosis of parkinsons which is actually the tremors/shakes from benzo w/d.  I was diagnosed improperly as well with fibromyalgia along the way as aches and pains were tremendous in interdose w/d and so lyrica and cymbalta were added way back when....needless to say its been a wild benzo joureny and now im only on ciprolex for the time coming off the clon...and topimax which ive been on for ages for migraines....and its an anti-seizure supposedly..lol...but dr wantedme to stay on those two while tapering then after taper go off those....im sooooooooooo tired yet having trouble sleeping as its 1:20 in the a.m and im on dear ol' benzo buddies....my brain feels so fuzzy...thoughts are there but not accessable if that makes sense?  i know what i want to think and say but can't get at it?*  My vision is wonky..like looking through a thin haze and yer i know things are there....i find my self blinking and trying to focus....and getting tired in the process so laying down and closing my eyes sems to be my answer....i love to reaqd but to focus is impossible.  It used to be i couldnt wrap my brain around what i read...now its i cant get it even in my friggin eyes..im just laying in the quiet lots....prayingand deep breathing...thinking of my kids n what they are doing during the day etc..to keep my mind away from stewing over this mess....i figure stew meat is soft and mushy and my brain isnt going to end up like that...quit stewing jen!  Yes i had eeg and all was ok..neurologist reassured me it was benzo w/d....and to go slow....go back to my last dose...and hold until i felt better....now im waitingfor the feel beter part...lol....i know it will come..ido have hope just feel like poop!  im  so tired...and its gettingtough to see...thanks to all who have posted...i love the support and encouragement!  blessings to you all.......jen

[[...]]

I have the blurred vision also.  It gets worse during the day and almost impossible to focus by night time.

I see throughout the forum, that problem is quite common.  Ugh, right?  Benzo withdrawal is the gift that keeps on giving! lol.  Remember to take good care of yourself.

XO Skyy

[[je...]]

Thanks for the post sky....Its so nice to know I'm not alone!  Nights are def. harder ....it's like focusing in those little crazy flipper things the eye dr makes you look through when you need glasses to check how blind you really are!  lol...It feels like my poor ol' brain has to try and try and try through out the day to make  my eyes, what they see and comprehension of those things they see all match that by the time evening rolls around it's toast.  I take my evening dose of clon and it doesn't get better either.....sleep makes it better as then they are closed and I don't have to worry!  The blessing in all this is I can eventually fall asleep.....Thank God!  I do notice my drive and zest for life is slim to none....not that I am suicidal at all its just blah blah blah...ppl talking...blah blah blah...things to keep me occupied...blah blah blah....it seems there's no get up and go and no hey! neat! in my life as of late....I think this may be the d/p d/r they speak of.....it sucks what ever it is......The energy needed even go to the grocery store or do SOMETHING is not there...I'd be content to lay in my bed getting up only to use the bathroom if I didn't feel the guilt of being a complete sloth to my family.  Urgh.  I wake in the a.m. shaking so bad now and nauseated to the pont of instant dry heaves over the side of my bed in my bucket as making it to the bathroom isnt an option...class at its finest. In the eves I have zinger headaches....but they ARE relieved with my p.m dose of clon....To watch my body be so hooked on this is horrifying yet to survive I have to keep trucking....The crying to my poor hubby asking him if this will one day be over is crazy!  I know at this moment it will but inevitably at some point in the day I'll be crying in his shoulder beging him to tell me I'm ok....like a stupid two yr old!  I get so afraid he is going to get sick of me and he reassures me nothing will make him go anywhere and he loves me in sickness and in health...that I will get through this in what ever time it takes....what a wack job I can be!  Holy vent Jen....Crazy or what today?!*  Heading to lay down....overwhelmed and tired.  Thanks again sky for the reassurance....

I don't think I posted I have a home visit from the pharmacist..yes a home visit...I was shocked.  Scheduled for the 9th of March to assist me in tapering and titration/compounding/etc....Called me yesterday to set it up.  Part of the CNP (Canadian Network of Physicians) Physicians can choose to belong to this and my dr is one of thirty dr's in my area who pool together to offer resources greater than just their own....had no clue he was a part of it until I ended up in e.r. and whammo...nurses phoning me at home..pharm's coming to assist me...It's crazy but I'll take the help and even if they can't be of assistance maybe they can become a bit more benzo wise and see first hand what this rat race is.  At least they believe me and support me and know benzo w/d is REAL!  There is hope....and my immediate hope is my bed as I am tired.

Blessings to all...............Jen

[[Bi...]]

Jenny,

 

Are you any better now?

 

I see Effexor was one of your meds. I c/t it back in 2002 and it was scary. I had a partial seizure from it.

 

Hang in there! Hopefully you will not have any more seizures.

 

 

Billy.

[[Bi...]]

PS- You asked if anyone seizured while tapering or c/t Klonopin. I c/t Klonopin once, and did have jerks / seizure. I had to reinstate the next day. I was so tired.I had seizures as a child.

[[je...]]

Thanks for the support Billy.....I was on effexor for a long time but switched to cymbalta back in Aug of last yr under dr's orders as it would help the bad case of fibromyalgia I had.  Needless to say there was and is no fibromyalgia...aches and electric zaps and cramping muscles were and are a part of benzo w/d...who knew!  My dr now believed that most of what I was experiencing was due to inter dose tolerance and thus weaned me from cymbalta to ciprolex...didn't bother me to wean over thank gosh.  I weaned over weeks.....and all went well....I also weaned off dopamine as I do not have frigging parkinsons/benign tremor as I was diagnosed with...the shakes would be sometimes and not all the time.....now I can see when I was in w/d I shook!  Lordy.  The weaning off the dopamine was weird but NOTHING like w/d...and it was over weeks....and any symptoms I had disappeared within days of being off.  Good good.  I also came off lyrica last fall.....that was an experience and a half but once again...NOTHING like benzo w/d.  Very livable in comparison....so coming off other things has been over 8 weeks ago now...I thought or guess am still thinking I had made it except through the w/d of the benzos which is still in progress...jujst holding to stabilize for now....This is all so crazy.  I feel like a poster child for why not to take prescription meds...and yet they are necessary in so many situations.  I cannot blanket dr's as bad or clueless as I have found a benzo-helpful dr now.  I cannot blanket the drugs as bad as they do have purposes beyond what I am familiar with. 

 

I guess I just thought I was at risk of seizures if I was going to c/t off these buggers.  I now know it can happen if a dose isn't for some reason tolerated.  I was worse in many symptoms and thought I'd get better...ya right!  Now I know to listen to my body as well as my head.....urgh....I just lost my thoughts and have a brain brown out.....gotta scoot...going to lay down.  Thanks for the support...I couldn't do it w/o knowing someone else was going through this.  Blessings to all........Jen

[[...]]

I wanted to stop by and say *hi* and commend your positive attitude about all of this.  I can't help but shake my head at the misdiagnosis and treatment you were subjected to.  Shame on that doctor.....honestly they could have killed you.

I know you are aware it takes some time for some of the meds to leave the body due to their half lives, but staying the course will help you stabilize and eventually taper the Klon.

I can't tell you what a difference I felt stopping the Valium.  My depression and lethargy lightened and granted I do have some agoraphobia and anxiety, but it seems so much better than when I was trying to taper off of the crap!  Time is really the key for me and staying distracted.  I have hope for the first time in a very long time!  So grateful not to be having the interdose withdrawal crazies.  I have only been off the Valium for almost 4 months.  Hang in honey!

[[je...]]

oh gosh...thank you skyy....I am getting a bit discouraged about my lack of "go" or "caring" and knowing it does lift is so helpful!  I CAN keep going knowing ppl.like you  have trudged this road and have been successful in getting off are finding life coming back to normal.  You give me hope!  I am having a better day...a window?  or stability?  or don't question it Jen just enjoy it and go with the flow?  I think I'll go with the later....lol... You made my day ...Thanks again skyy!  Blessings.......Jen