GOING C/T OFF OF FIORINAL NEED ADVICE PLS

[jen66]

I suffer from chronic pain & have for almost 18 years. I have been on & off of fiorinal for years. This round I've been on them since Dec/06 I saw my Dr. he gave me phenobarbital so I won't have seizures during the detox. I am concerned about what might happen though even with the phenobarbital as I was taking as many as 16 fiorinal per day. I don't want to go to hospital unless it's absolutely necessary. I have read about making some kind of detoxing solution to help with WD symptoms but I don't know what it consists of so if anyone can help there, I would greatly appreciate it. My husband is staying home with me til I get thru it. Dr said to take my BP daily. What else am I in for? I took my last dose last night. Already have a headache this a.m. I know I will have the typical sweats etc but am I in for anything life threatening? I began taking 6 to 8 pills per day but over time I became tolerant so Dr kept giving me more. Now I get 392 pills per month (14 per day) & I want off of this. I am also on Dilaudid 8mg 11 pills per day. This will be next but first I have to get thru detoxing off of the fiorinal. Can anyone give me some advice as to how to deal with WD & what else I might expect?

Thanks in advance.
Jen

[blueletter]

As someone who's just stopped fioricet, I was reading this thread with interest.
It also helped explain one response in my thread here, stating that my wd plan is not the most safe. I think 1) that's a relative term, as we are all different, and 2) phenobarb tapers are not that unheard of everywhere. It's what was recommended to me by two docs I trust and one RN who specializes in chronic headaches. Even still, I looked up everything I could find on it before I agreed. Lots of articles and studies showing it can be a viable option, even at home. Communication with everyone on your detox team is key. Vicki is 100% right - life is going to keep going on around you, but if you can get through the physical part, get follow-up for emotional support and addictive behaviors if needed, you're going to be much better equipped to deal with life on the other side of this medication. I hope the OP found her way.

[vicki595]

Yes, that was her last post forever...Do you need some help?

[Rightdivider15]

I was really interested in this thread and it just stopped. Whatever happened to Jen ? Did she just stop posting? Now I am upset!

[jen66]

Hi Jade, we seem to have alot in common! I have been thru so much in my life & as I said above I am so very tired but I am always happy to meet new people & hopefully develop new friendships. Sometimes I feel like such a phoney because people don't have the slightest clue of who I really am & how I really feel. They think that because I look fine, I AM fine. I have spent the last 18 years explaining & defending myself & it took a long time but I finally realized that I don't have to explain or defend anymore. I am who I am. I have a disability & altho you can't see it, it doesn't mean it's not there & it certainly doesn't make it any less painful. In fact, it makes it more painful to continue to explain & defend so I don't. Besides, it's nobody's business but mine & whomever I choose to share it with but it's made my world a very small one as I find that the people that I do share it with judge me. Especially my family & that hurts the most.

I am glad to meet you & I'm glad that you're pain is now somewhat manageable. I wish I could find a way to get there myself. Hopefully soon. I did get a bit of good news recently & it couldn't have come at a better time. My disability application has finally been approved!!! I will finally be getting my own money to put into my own bank account & hopefully be able to move forward on my own.

I know how painful those ulcers can be. I have pix of when I had my scopes. They are awful to look at. It took several years for me to get a proper dx. My dr kept sending me for ultra sounds that basically found nothing but at 1 point he thought I might have had a bad gall bladder....then pancreatitus....finally after 3 solid weeks of lying on my couch not being able to eat or drink anything, I got on my lap top & decided that I was going to find out what was going on if it killed me!!

After all my searching the web, I went to my dr & asked him to test me for the H Pylori virus & what do ya know it came back POSITIVE!!!!! THEN he sent me for my 1st scope. Also put me on triple therapy 3 times but nothing seemed to work. My ulcer was so bad, my surgeon said to me, I will give you 2 weeks to get this thing healed, if it's not healed in that time, you're having surgery! Well, that kind of ticked me off because he was acting as though I didn't have a say in the matter. I checked him out online on a "rate your Dr" website & found that people were saying some not so nice things about him. I never saw him again. On the upside, I am no longer having daily attacks.....in the last month I've had maybe 2 or 3 so I think I've come a long way!

I'll tell you a funny story that wasn't so funny at  the time....when I was in the middle of a really bad attack...the kind that send you to emerg....my husband got online & came up with some concoction that consisted of APPLE CIDER VINEGAR & he made me drink it....omg I was so sick.....more stomach pain & vomiting blood....THEN, I was on my way to the E.R. The moral of this horrible story....I know you know....NEVER DRINK ANY TYPE OF VINEGAR IF YOU HAVE AN ULCER....LOL

[jen66]

omg Vicki I am so very sorry for going off on you....I was having a really bad day....the truth is...I feel like everyone has judged me in one way or another....especially the people that know me best & this hurts me so deeply....I just wish that they could feel the physical pain that I feel for just 5 mins out of their day BEFORE they judge me! I feel horrible for being abusive to you. That is so NOT ME! PLEASE accept my deepest most sincere apology.

I know you are trying to help me. I just feel like I have been given so much more than the "average" person & I know that life is not fair & I don't expect anything out of life that I am not willing to put in. I'm just so tired of being in so much pain all the time. Honestly, I had no idea I was in the addictions forum but maybe it was meant to be. I haven't found my way around yet but I haven't been spending much time online. I am just trying to get thru this next week.

I am so very sensitive to being called a drug addict because that's all I hear from my husband. As I said, he tried desperately to prove that I am an addict but after seeing all 3 doctors, they all disagreed with him. What's funny is my husband has been taking my dilaudid for months now but I'm the drug addict! For all I know, I could be a drug addict but that doesn't change the person that I am inside. I do whatever I can to help anyone in any situation if they need it. I once gave a homeless man $5 & my husband went ballistic.

I find that I am so emotional but I did just learn that I am peri-menopausal so I guess that explains alot! I feel like I am doing better than expected. I am still alive! I've been able to eat & drink pretty regularly. I'm in another bad marriage & I need to learn where to put my anger & not lash out at people who certainly don't deserve it. Today is especially emotional for me because it's the 2nd anniversary of my mom's passing & I miss her terribly. I am so very sorry. Thank you for the link but I may just stay right here if you'll have me.

[Jade59]

Hi Jen, and congrats on One Week free of Fiorinal!  Let me just say, I could of written your post (minus the hideous abusive you suffered).  I too have nearly all your conditions and in extreme pain most of the time right down to two duodenal ulcers so I take Fioricet now.  At one time, I was taking as many Fiorinal as you, if not more.  In 07, and after being on them for 30yrs, I tapered off and got off completely by replacing it with Advil or aspirin which my poor stomach could not tolerate and was nearly perforated already unbeknownst to me and I was faced with a life or death situation...so no more NSAID's other than occasionally and back on FioriCET.    

I just want to tell you, I felt So Much Better off the Fiorinal with the pain at a more tolerable level.  I want to encourage you - you Will feel better without Fiorinal!  The first Fioricet I took after being off for months, made me so sick, the room spun, but I had no choice since I couldn't take anything else and now with just 4 per day, I feel an increase in pain and that decrease in pain from 07 is long gone.  Good luck, Jen -  this drug is a tough one!  

p.s. I read your last post here and would Still encourage you to move forward with giving up the Fiorinal completely.  You are at a week so keep going!!.  You very well may have to replace it with something else, but I would encourage you to give this your very best shot and see if you don't feel better.  

[vicki595]

Okay..here's the link:

http://www.medhelp.org/forums/Pain-Management/show/53

[vicki595]

Okay...You had me good and fine until you accused me of judging you...I didn't call you an addict did I?  You may NOT be. I have no idea what your life has been...I can't possibly know your physical pain; especially when it's not explained the way you have.  Jan..you came here; to a substance abuse forum and you've been speaking with addicts. Yes? You stated you didn't want to take the Fiorinal anymore and were tapering and wanted to be off of it. My Mayberry and I have bathed in the stuff for years (not together but...) and we've gotten to another side...and we know about it from that end....

You know,really,this is not very theraputic but,Jan:  If I were YOU and this was me,I would have already taken my dose for the day,called it chronic pain because I think it is,and tried to have at least this area of my life calm.  But,that's just me...and I really appreciate  everything you're saying. I do...it hurts me...and I want to help you.

Have you checked the Pain Management Forum? Jan...they are wonderful there(not that we aren't  :)  and you might feel and GET better in a different milieu...don't forget about us here,though!! We can always listen..xo

[jen66]

Vicki, I really do appreciate your advice & support but SAYING it's possible in ANY situation is not correct. I will tell you a bit more about me ok...

Since I moved back home to Canada (my hubby is American so I lived in the U.S. for 7 very long years) my hubby has done everything within his power to try to prove that I am a drug addict HOWEVER, after seeing 3 of the leading drug addiction specialists in Canada, all 3 Dr.s said that my problem is not drug addiction, it's PAIN.

I was married before for 13 years to an abuser who threw me into a wooden support beam in my basement. He grabbed hold of both of my arms & threw me into the beam & I hit the beam right between my shoulder blades & my head also hit the beam. Another time, he got up from the kitchen table & booted me with his heel in the mouth while I was sitting in a kitchen chair. I flew from the chair & went through the drywall & my head hit a stud in the wall. That took 4 stitches in my lower lip where I still have a scar.

Since you're a nurse, I'm sure you know that they don't use stitches anymore for those types of injuries however I had a gaping hole in my lip so they didn't have a choice. Another time he threw me down the stairs as I was trying to flee & I ended up with a broken foot & torn ligaments/tissue all the way up to my knee. I have had countless black eyes & broken bones & because I was 19 when I married him & he was 31, I was stupid enough to believe all the horrible things that he said to me on a daily basis: nobody would ever love me, I was stupid & ugly & my personal favorite, he would blow up my mother's home with her in it if I ever left him. So I stayed with him out of fear.

13 years of abuse is what caused my fibromyalgia/myofascial pain & chronic fatigue so when I take my meds, I take them for PAIN. I don't get "high" & I don't feel the euphoria that everyone talks about. As a matter of fact, my Dr prescribed Marinol which is marijuana in pill form but THAT med DID make me feel high so I stopped taking it because I felt as though I couldn't drive. My Dr then told me to grow or buy my own marijuana to see if I could get some pain relief that way I could control the amount that I smoked so I wouldn't get "high". My Dr has tried on several occasions to talk me into having a morphine pump surgically implanted in my abdomin to which I have declined.

Maybe I am in the wrong forum. I don't know. What I do know is that you can call it addiction or call it dependence, my body is used to having these meds on a daily basis. Before I ever married husband #1, I wouldn't even take an extra strength Tylenol!

So, I finally mustered up the strength & courage to leave the POS that left my body in this condition because I knew that I deserved better. Well, better came along about a year & 1/2 later & I moved to the U.S. to be with him. Still struggling daily with pain but doing okay until 2 police officers came to my home. Long story short, hubby #2 was accused of murder.

After fighting for approximately 3 years to prove his innocence, investigating the crime myself & taking it to Federal Court in an attempt to expose the POS who DID commit the crime, the stress of all of that (& believe me I left a lot out), I could no longer deal with the daily pain so I chose to go back on the meds so I could function & not want to feel like dying every day of my life because the pain was so bad. The whole point of taking these meds was so I could LIVE WITH the pain, NOT DIE (or want to) from it. Anyone with chronic pain knows that meds don't cure or fix the pain. They don't take it away by any means. They simply make it easier to live with pain.

Vicki, 3 & 1/2 years IS a long time. It's a long time to fight a law suit, a long time to be married to an abuser, a long time to look into the eyes of an innocent person who believes that everyone who ever knew him thinks that he is a murderer, a long time to fear for your own safety, your own life & the life of the one you love and it's a long time to hurt.....mentally, emotionally AND PHYSICALLY....My greatest wish would be to have a "normal" pain free life.... unfortunately I don't.......but thank you for judging me.....

Btw, today is my 7th day without fiorinal.

[vicki595]

No Jan.  It IS possible in your current situation. On any given day,any one of our lives can be touched by sadness,loss,lonliness,or fear. It's called LIFE and it can turn our worlds upside down.  So,think about this: Are you taking the medicine due to stress and anxiety?
Don't answer,just think...3 1/2 years is a long time. There's always going to be something that will challenge us and the right time never comes...It's my own opinion but you'll never get off the roller coaster until you convince yourself you have to. Doing this your way is increasing your anxiety!
At the very least, please get some therapy/support/recovery care in your life.It will help you!  Good luck.

[jen66]

I got the caffeine pills & I took 1 200mg pill. My pharmacist said that he calculated that I had been taking approximately 600mg of caffeine per day. I will only take the caffeine pills if my head is pounding. I have kind of spurts of anxiety. My Dr would have preferred if I had done a slow taper but I have been attempting that for 3+ years & it just won't work because every time I decrease by 1, 2, 3 or more pills, something happens in my life that causes major stress which causes more pain & I end up going back up so the choice to do this C/T is mine. I just told my dr that I'm done with the roller coaster & I want off. 1 year ago on the 26th of this month I lost my sister to cancer. She was 62 & had been battling cancer for 12 years. 2 years ago on the 8th of this month I lost my best friend (my mom). This was extremely hard on me emotionally & I have been having problems in my marriage as well. So the slow taper, while it may be the best & safest way to go, it's just not possible for me in my current situation. My Dr doesn't think that it's a big deal to just stop. It's my pharmacist who seems a bit concerned. When I attempted to stop 3 years ago, I told my Dr. then I went to my pharmacist & told him that I was about to stop them & he was the 1 who told me that I couldn't just stop so he called my Dr & a few mins later I had a script for phenobarb. About 2 or 3 days into it, I got a call that my mom was getting close to passing so I decided not to stop the fiorinal. I drove 4 hours to be with my mom & I spent 2 weeks with her basically nursing her back to health. She lived another 10 months after that. So part of my problem is stress. When I am under stress it causes more pain which equals more meds. Anyway, I thought it would be worse today but so far it's not so bad. I hope it stays this way but in reality, I know it won't. Thanks for the support. I really do appreciate it.

[my_mayberry]

Well yeah...a loading dose is done in the hospital because it needs to be done...thats why this taper just seems unusual to me. The fact that you didnt have one means you probably wont reach full theraputic effect until the end of your 2 weeks...or even longer...by which point you will be tapering that dose. I dont know...just odd to me. Maybd you wont have any problems, though. Good luck! Let us know how its going!

[vicki595]

Okay...loading dose in the hospital...yes,that's true. But,that's why we're not sure why he didn't just use the Fiorinal to taper you down...you could ask him.

Your b/p is not dangerously low but it's low and you have medical issues so...keep an eye on it. It's certainly better than being too high but again you decide. A hypotensive person will feel weak and dizzy quite often; like all day long...

It's fine if you have a million questions! Just remember, I'll only address the Fiorinal;I'm not here in a medical capacity. Of course, it's really hard to take the nurse out of the girl! I'll help as much as I can and you do sound stable to me..your thoughts are clear,etc...You know what to do. A lot of this is anxiety. Just remember,the hospital is there for a reason!!
And don't hesitate to call the pharmacist!

It's fine just to post. We don't need salutations!  Matt and I along with everyone will certainly see when you write...but I appreciate that...very sweet.

You only need the valium if you think you do!  :) Mostly,you need distraction and a nap!

[jen66]

Thank you both for all the info...I called my pharmacist & he said that I would have had the loading dose only if I had gone to the hospital. He also told me that after I'm done with the 2 weeks of phenobarb, he would give me another script for tapering the phenobarb. I am like you Vicki, if I'm not worrying, I'm not breathing but I don't usually worry about myself so it's a bit strange for me. My BP at my dr's on Monday was completely normal. If memory serves I believe it was 120 over 68 so I think it is a bit low. Since you're a nurse I thought you would know how low is too low.

I am 45. I have fibromyalgia, chronic myofascial pain, chronic fatigue syndrome, DDD in my neck as well as arthritis, duodenal ulcer, my left shoulder is almost thawed now after having frozen shoulder, I have a history of bi-lateral pulmonary embolism, I've recently lost about 20 to 25lbs in a short period of time due to stress & I'm a smoker, I have endometriosis. I had surgery for stage 3 endo in 2005 & they found a large benign mass attached to my bladder....I have probably forgotten something but the FM, CFS, CMP & DDD is by far the worst of my medical conditions which is why most of the drs I've seen have said that it's unrealistic to think that I can live a med free life. I have read that I should be taking valium on a regular basis until I get thru this as well. I have been taking 5mg & it says to take 10 to 20 mg so I may try 10mg in the a.m. when my anxiety is at it's worst & maybe 10mg before bed.

I will keep you posted with regards to the WD & I will probably have a million questions for you if you don't mind answering....I'll keep posting when I can. Thanks so much for all the info that you both have shared.

p.s. I'm not sure how to post to more than 1 person at a time as only 1 name highlights for me for some reason but THANK YOU BOTH!!

Jen :)

[vicki595]

Okay...Mayberry and I live in the US. It's been many,many years since I've heard of a phenobarb withdrawal from a barbiturate. Both Mayberry and I used the Fioricet and tapered for a long time. 9 months for me and a year for him.

I'm an RN  and although I am NOT a member here in that capacity,I'll tell you this:

I ALWAYS err on the side of caution. So,yes,I think you should be in a hospital for a number of reasons. You're anxious,you don't feel as good as you could(in my opinion),and it's just a whole lot less stressful for you if you're in a controlled environment (hospital) Also,from a humanitarian point of view: You just shouldn't have to suffer and worry!  Plus, if there was a negative situation at home,you're too far away from a facility and most importantly,you have other health concerns. I don't know how old you are or any history so I don't know if that's too low a blood pressure for you...it would be for me but someone else might think it's perfect so...I think you'd feel much safer at the hospital.

Check back and let us know what you decide...don't worry...

[my_mayberry]

Oh...and when i stopped, i was already on a low dose so i didnt need a taper. At the heighg of my addiction, though...i was taking about as many fiorinal as you were and my taper was about a year long. I didnt change to phenobarb.

[my_mayberry]

Caffeine will make ulcers worse too. Did mine. Dont freak...just ask your pharmacist.

[jen66]

When you had to stop everything, how did you do it? Did you go to a facility or do it at home? C/T or slow taper? What type of WD did you have, how bad was it etc...Anything that you can tell me will help.

Thanks in advance.
Jen

[jen66]

Hey Vicki, another question for you. My hubby took my bp & it was 98 over 60. Is this ok or would you say it's low?

[jen66]

ok I was feeling not too bad but after reading my_mayberry's post I am bordering on freaking out....I have high anxiety but I have valium if I need it but nobody said anything to me about a loading dose of phenobarb. Now I am scared!!!! I have a very bad duodenal ulcer. I've had 2 stomach scopes. The 1st showed tiny ulcers from my esophogus all the down to my duodenum. Had triple therapy treatment 3 times & then had 2nd scope. The smaller ulcers were gone but the largest one in my duodenum is still the same. but this is not my concern right now....I am on 2nd day without fiorinal so I am going to call my pharmacist about this loading dose. I want to try to be as clear as I can here. I am not tapering anything right now. I stopped the fiorinal completely. Last dose was Tuesday night. I started the phenobarb on Wed morning.

Vicki, I live in Canada. I'm about 5 miles outside a very very small town so the closest hospital is about 30 to 40 mins away. I was worried about what to expect in terms of WD & I read somewhere that one could have CA & that worried me. If it's phenobarb that they would give me in hospital, what would be the difference in just taking it at home other than the obvious....I would have med professionals watching over me....do you think that I should be in the hospital?

[vicki595]

Try not to worry about future pain...What are you anxious about for today? Are you expecting something bad to happen?

What country do you live in?

[my_mayberry]

well this all seems to be a very sloppy and poor taper. if i'm understanding correctly, you discontinued fiorinal cold turkey and started phenobarbital? this doesn't work because phenobarb takes so long to build up in your blood. you need a loading dose....otherwise it's mostly useless. by the time the phenobarb builds up to the levels you need, you will already have gone thru most of the withdrawal.

i really think this is a poorly executed taper...if you are still having issues, ask your pharmacist about a loading dose. problem is that i don't know what kind of loading dose you would need now that you've already started taking it....but more eductated people than myself could figure it out.

you can have severe symptoms weeks into discontinuing this drug, so if they happen to say you're in the clear as far as seizures go, i'd take it with a grain of salt.

now that the phenobarb is already in your system, though...it has a really LOOONG half life, so by no means should you go back to the doses of fiorinal you were taking. you could easily overdose. by long half life, it is in upwards of 200 hours. that means the dose you have taken today will reduce by half in 200 hours....which still leaves a lot in your system. then, that dose will reduce by half in 200 hours. each person is different, so the rate of elimination is different, but still it's very long. much longer than butalbital. this is also why a loading dose is important, because to reach the theraputic range, it can take weeks....which is why a loading dose is usually given. rehab facilities are much better at this than family doctors or pharmacists. not that they don't know the information....but they don't have much experience with it. treating this addiction is rare. treating it with phenobarbital is even more rare and the only places with info on how to do it tend to be rehab facilities. doctors learn it but never use it, so obviously it's forgotten by the time they need to put it into practice.

anyway....i'm not sure what to tell you. i would agree with your pharmacist that this shouldn't have been done at home, though. as to the headaches...caffeine pills will help. i would slowly reduce your dose on those, too...caffeine can cause MAJOR rebound headaches. you can only know what your pain is like once you have discontinued both the butalbital and the caffeine. i suffered migraines almost daily. i took fioricet plus excedrin to help with them...but they were there all the time. in march i ended up with an ulcer so i HAD to stop everything. haven't had a migraine since. i never would have imagined it!

[jen66]

I have been asking my Dr about this "drug holiday" thing that I read about & he didn't have any answers for me....it just scares me to think of the pain I will be in when I get thru this & how I will cope with it......I don't want to continue this cycle...I'm so tired of it....it truly fee;s like a ball & chain.....can't make plans to go away unless I know I have enough meds & if I end up being gone longer than originally planned, it's uh oh....what do I do now? It happened to me in 2007 I went to the U.S. in Nov & I was only supposed to be gone for 3 weeks...I ended up being gone for almost 6 weeks & it was really hard finding a Dr to give me what I normally take.....I had to go to a late night clinic & I was extremely lucky to have found a Dr who knew what would happen if I didn't get them. He called my Dr at his home that night & I got my scripts....went to the nearest pharmacy & filled them....I just don't want to live like this anymore....I am also taking low dose alprazolam or diazopam for my anxiety....I am getting really anxious now wondering what will happen tomorrow.....it's good to be able to talk about it so I thank you again for taking the time :)

[vicki595]

LOL...I'm still working so...here I go:

The doctor is very right. The pills cause more pain. I know this to be true. I was given this med when I was 17...a gazillion years ago!!  I had migraines. The stuff worked and for years I took it respnsibly. That was the problem. I grew up with it so it was part of me. UGHHH!!   Constant headaches=constant pills.  I was able to function perfectly,I thought. LOL  But,really,I did fine on them but I was so hooked!  Fast forward to present and I guess I've had 3 migraines since I've been off of Fioricet. The damn pills contributed to most of my problem! A lot of it is rebound pain so I was forced to keep taking it and it worked very nicely. I never felt what you would call high but I certainly liked it and functioned very well until the end came and that was ugly.
So,I know you're doing the right thing. Many people with chronic pain take "drug holidays"
just to evaluate their true pain level.  It will work out! Don't think about all that right now. Just try to live in the moment...