Lost in my Oxycodone haze

[pamndorr]

I so want to give up. I am so tired of drug changes and side effects and whining and crying all the time.

I try to stay away from this site during my real bad times. Actually I try to keep my distance from a lot of places when I get like this. I guess I figure you don't need me to add to everybody's own discomfort and I seem to whine a lot on here but I am just so lonely and tired of being alone. Not that I don't have people around me that care...I do. I have my husband and my mom and sister and a couple friends that seem to understand...but they can not possible understand what it is like...day after day and night after night for months and months and months on end. Doctors with take this drug if it doesn't work then here take this one. My body is tired from all the drug changes and no sleep and pain...and that pain is spreading.

I even went to see a psychiatrist, only to have him tell me that WED is not painful and I have no reason to be on the drugs I am on. I went to talk to him about getting restarted on Adderall. That was the only thing I needed to talk to him about. He refused to give me the Adderall script. Said I didn't need it...all I needed was sleep. I left his office in tears with prescriptions for Flexeril, Valium and two other drugs that I don't recall because I did not get them filled. I took the scripts to my doctor at U of M and told her how the appointment went. She told me not to go back to him again. One of the other scripts was for some drug that took care of twitches and jerking of the body and another was a blood pressure pill that would help with sleep. The guy was an idiot. He made me feel like I was making things up. Told me that what I had didn't sound like WED at all.

I started on CPAP machine. I have mild sleep apnea. I didn't stay asleep long enough each sleep study so they could adjust the pressure that I need so they are guessing at the moment. I think I may sleep a bit better but the WED jolts me up and awake every night.

I take Cymbalta and that helps with a lot of the little aches and pains I have had in my legs and my husband says my moods are much better on the Cymbalta as to when I was on Welbutrin. But Cymbalta made the WED worse and it costs me 100.00 a month because it is not on my insurance formulary. I also take Horizant at 5pm each day...which costs 80.00 a month because not on the formulary and it doesn't seem to help anything. I just got off the Pramipexole and started Requip at low dose and titrating up over the next 3 weeks. I also have been on the Oxycodone 10 mg. Was taking it twice a day..now need it 3 times a day just to get through. Dr. said no to increasing it to 3 a day but I don't know what else to do. I sent her a message this morning asking her what she wants me to do. I have not driven in almost 3 weeks now....cant be trusted to drive on that much Oxy.

I go to see the doctor about iron infusions on Wednesday this week. I had my ferritin checked again last week and it is now at 37.1. It was in the 60s a couple months ago. Sad thing is when I called my primary to get the results they told me my ferritin was normal. They still don't understand it and when I try to explain it to them they don't seem to care. The paper they have says that is in normal range. Sad that I had to go to a doctor that is over two hours away from me before I found one that would listen and understand. My last iron infusion was February 2011. At that time my ferritin went up to over 180...I am pretty sure that is what it was. It has taken it less then 2 years to get real low again.

So, I do understand that this disease is what it is and I can't change what it happening to me...but dang how is one supposed to cope all the time and be positive and stay nice and calm and get some things done. I swear I have lost moments in my days...like hours at a time. I guess it is just because I am always in this drugged up haze and I just cant seem to make myself move at times. Like I am stuck...but stuck standing up pacing and riding the bike and pacing.

One good thing if I have to find good in all of this. I am OFF OF THE PRAMIPEXOLE!! I will never go back on that drug again. It is awful...or it was for me. My legs/ankles,wrists and feet may hurt a lot more since I started cutting it out of my drug routine...but my mind is better. I know it doesn't seem better after reading the above..but it is so much better. On the Pramipexole I have never in my life had something in my brain destroy me so bad. I shopped and gambled, shopped and gambled, shopped and got caught gambling and husband said if I went back he was leaving me. So I shopped at junk stores and still snuck off to gamble. Now that I am off the Pramipexole...no more demons running through my brain telling me to shop, gamble and worse of all was that little voice at the end of each shopping trip or gambling trip that told me to just end it all now. I have had to talk myself out of driving my car off a bridge more then once over the past year or the times I would beat on myself for doing such things. I hated myself al the time and I truly wanted to die. And yet, I told at least 4 different doctors that was happening to me while on that dirty drug and not one of them listened to me. That is why i started doctor hopping and trying to find somebody to listen to me. Sad thing is the Pramipoxole did appear to help the WED...but the trade off for the mind was not worth it.

I am so tired and cold and sad and bored and really want my life back. I am 55 and feel like it am pushing 90. This is not what i had in mind for me at this age. But it is what it is and I will find a way to deal with it in my own time.

[Polar Bear]

Pamndorr - my heart goes out to you. I am happy that you have your lovely husband and family and friends, they care and support you, they can see your discomfort and pain even if they cannot feel it themselves. Hubby has been using some tough love with regard to the gambling issue.

Never ever hold back from coming on here. We are all sufferers, we know....

And disgraceful.... a psychiatrist who knows so little about WED/RLS, who appears to know nothing. What power these doctors, all doctors, have,

Regarding your symptoms it has just crossed my mind that if you have come off the pramipexole (and gained some brain clarity) you are possibly also having withdrawal from the pramipexole. Yes, you have started the Ropinerole/Requip but at a lower dose..... something to think about.

Also, you are taking a DA and your ferritin is at 37 which is pretty low for those of us with WED.
Normal Ferritin - normal for who ?
Have you ever taken any documentation with you at your appointments.
On the Foundation Web Site there are several published documents which could be printed off.
Also see the links in my signature, the signature of badnights and also the signature of Viewsaskew.

I repeat, please don't stay away from here, come to us when you need to shout and scream, give out about doctors who don't know what they are talking about and remember also that there are also doctors who want to help though it can be difficult to find them at times.

Wishing you all good things.

[ViewsAskew]

It is SOOOOO hard when you don't have doctors that really get it. I honestly think I would have driven off a bridge by now if I hadn't had Dr B in my corner.

It sounds like your primary mostly gets it. That's good. Now, if you can just find someone else to help, you may be able to get through this.

How much Horizant are you taking? Dr B had me up to 3 tabs a day, and still no help. After 3 weeks, I just said please, stop this. It just made me sooooooo tired.

The Requip may be helping, but if I remember correctly, you thought you might have augmented on pramipexole. Until you get than infusion, is there any way you can hold out and not take the REquip? I know how hard that would be....but it really might help to stay off ALL dopamine agonists for at least 3-4 weeks. Without a strong opioid, that might be impossible.

I can only say that I've felt just as you do and I've found a way out, each time. I'm in a relatively crappy place right now, actually - I think I have more faith now, though, that I'll get through it, because I know I have before. I'm not sure how, but there must be a way. Thinking warm thoughts that it works for both of us.

[aveerik]

Pamndor I know how important this forum was to me when I was losing it and knowing no one could understand what I was going through except the people here. Plus there are so many years of experiences good, and sadly many bad that everyone has gone through that we can learn from.

I am sorry things are so tough right now and I hope they get better and it sounds like they are better with the gambling and shopping. Hang in there.

[EeFall]

I so want to give up. I am so tired of drug changes and side effects and whining and crying all the time.

Last night I wrote a note similar to this one on here, I also would so like to throw in the towel sometimes. After writing the note and hitting the Submit button (the site had logged me off because I took so long to write it) that it said I needed to login to do that or something like that and I lost the entire message. I then went to bed around midnight. Woke up at 1 am choking and gasping for breath, not sure what happened. Threw off my VPAP, took out my earplugs, and my what-ever-you-call-it bite grip thing-a-ma-jig so I don't grind my teeth device and went into the bathroom in an extremely bad state. Took a hot shower, slept in, went to work late and another day has passed.

I agree about the pramipexole as I have conquered it too and I hope to never take it again - ever. Unfortunately I went from one bad situation to another. My methadone & Lyrica is making me a mean SOB. I try to avoid most everyone because most everyone makes me feel bad one way or the other. About the only one around me that really understands is my wife, even she doesn't fathom the total depth of just how WED and sleep apnea, along with the meds have changed me.

I am at my new normal, I have attained many over the last dozen or more years, but it isn't much better than all the others. I'm not going to see normal ever again, I am pretty sure of that now and there is nothing I can do about it. So I live in my Methadone/Lyrica haze (I like the title of your post) and continue to hope. Unfortunately my lost post from last night was trying to come to grips with the fact that WED and sleep apnea (because of lack of sleep mostly) have forever altered my life. I lost any family or friends I once had and don't attract any new ones for sure, so I live in a kind of void which is what is left of my life.

The post I lost last night, it was also saying that I can't hardly stand to come to this site anymore either because I get hurt even by things said to me here and I am afraid I have hurt others here too. It is difficult to stay away but I have deleted the links and I'm going to make an effort to do so. Maybe it makes sense to you, from your writing, I think it might. When I got cancer those around me thought I was mad to think it was trivial compared to this, but it is just that they don't understand how devastating it can be. I see how those with just cancer have all these people that rally around them but I'm such an SOB that no one cares if I die. I wasn't like that until this disease did it to me, that is how it is worse, I'm mostly alone like many are with WED & sleep apnea.

[ViewsAskew]

That, to me, is the worst insult of all. We finally find something (pramipexole, Lyrica, methadone, whatever) to remove the worst of the WED....and we're worse in a different way. I've been angry, mean, sad, depressed, jumping off the cliff depressed, and lethargic over the last ten freakin' years. Rarely have I felt good. I didn't have WED during many of these times, though, so I guess I'm supposed to be grateful....

[Polar Bear]

Eefall - I wish that in a few days your spirits lift - it is so difficult with all the drugs that we take and for sure, we barely know who we are any more.
And I hope to continue to read your posts.

[cornelia]

I don't have words, just tears when I read your stories.

We are lucky that we have caring husbands; can't imagine to cope without them and have to live on my own with this disease.
Corrie

[aveerik]

It makes me so sad the crap everyone has to endure from doctors and the side effects of medicines. All I can say is reading posts about all the different experiences and feelings that everyone posts helps me a lot. Also being able to vent helps me a lot and as this is not the Rainbows and Butterflies discussion board everyone should feel free to vent, share, whatever the hell they want.

[badnights]

Lord, if we were all supposed to be cheerful on this board, I can't imagine how many of us would be dead or bonkers by now. My second post was a cry of despair (a rather long one). The people on this board and Dr. B's answers to them and to me are what pulled me through.

Now, I can only say that I've felt just as you do and I've found a way out, each time. I'm in a relatively crappy place right now, actually - I think I have more faith now, though, that I'll get through it, because I know I have before. I'm not sure how, but there must be a way.

ME too, it gets easier because you come to believe in the impossible - and somehow, that impossible happens.

pammdorr this will be history for you some day too. I expect the nastiness I'm dealing with now will be history some day too. Pramipexole has to be one of the worst drugs out there for WED patients. It causes not just one horrible thing - augmentation - but often two - impulse control disorder - and three - the people who used to love you come to blame you for the problems you're having, as if you're doing it on purpose. Yet you have gotten yourself off of that, and been through hell to do so. I admire you wildly!

What is this about an oxycodone haze? Have you been on it long enough to find out if the effect is one of those that wear off in a few weeks? Is it a mood-altered haze or just a sleepy haze? I think if the former, it doesn't stick around - you get opioid tolerant, and if you were seeking that effect (! ya, I know) you would have to raise your dose. If a lseepy haze, it might also be a 3-4 week side effect, or longer lasting, from what little I've heard.

[aveerik]

Badnights are they saying Pramipexole is a bad drug for all cases of WED? I couldn't tolerate more then a week on it but thought I was not in the norm. That and the Requip I was given the first time both made me so ill I couldn't tolerate them, that plus they didn't help my symptoms.

Pamndor the side affects from opiates to diminish with time, as do the side effects of most drugs. I wish you luck in figuring it out, hang in there.

Eefall I would be sad to not see any posts from you, I always can relate in some way to what you write and I get something from each of your posts so I to hope you continue to post.

[ViewsAskew]

Badnights are they saying Pramipexole is a bad drug for all cases of WED? I couldn't tolerate more then a week on it but thought I was not in the norm. That and the Requip I was given the first time both made me so ill I couldn't tolerate them, that plus they didn't help my symptoms.

Pamndor the side affects from opiates to diminish with time, as do the side effects of most drugs. I wish you luck in figuring it out, hang in there.

Eefall I would be sad to not see any posts from you, I always can relate in some way to what you write and I get something from each of your posts so I to hope you continue to post.

I'm not sure where all the experts stand now, but my guess is that they'd agree to the following. Pramipexole, or any other dopamine agonist, should not be a first choice as a WED drug any longer. That's because of the long-term augmentation issues, not because it's not tolerated well. Because augmentation is such a big issue (and the heart issues are also to be considered), It (and all other in its class) is better used if things in the anti-seizure class fail. It should only be used when serum ferritin is high enough. And, alternating it with another class may be very important to prevent issues such as augmentation. If anti-seizure drugs fail, then it's possible that a good option would be alternating a DA with an opioid, avoiding the worst issues of both.

Pramipexole does have many side effects, but it appears from the studies I've read that it's normally tolerated well. As with all drugs, when it has side effects that are intolerable (and almost all drugs can do this), it should be stopped immediately.

[EeFall]

Eefall I would be sad to not see any posts from you, I always can relate in some way to what you write and I get something from each of your posts so I to hope you continue to post.

I hope you can also relate to this ((((thank you))))

[QyX]

When I was taking Oxycodone in the past I had to take it 3 times per day too. It simply wasn't working long enough.

I didn't have this issue with other opioids. Maybe you could switch to Morphine or Hydromorphone?

[pamndorr]

I am still alive!!!! Thank you guys so much for being here for me at one of the lowest times in my life. I look back on this post and realize how much time has gone by and how much of my life has changed since I first wrote that. I thought I was going to die....I actually wanted to die. I was miserable and just at the end of my rope. Not sure if everybody realizes how much help this site is. I wish I was more like some of the others on here that come and give encouragement to others. I hope that I can start to do that now that I have lived through this last bout with WED. I understand it so much better now.

So update time on me. How narcissistic does that sound? Sorry!!

Lets see. Since I was last on here I have had two knee surgeries the end of December...had arthroscopic on both knees done at the same time because I told the doctor I was not going into the new year with anything else hanging over my head. It was a rough few days but I made it and I can walk again without too much pain...yippee. So I got the knees thing taken care of...that is what was causing a lot of the swelling in my lower legs. That helped a lot because nobody could really tell me why my legs kept swelling all the time. It was arthritis....

I was weaned off the Pramipexipole slowly. It was rough. I went through withdrawals big time. But I did it. I am off that drug and I will NEVER go back on it again...ever...never!!! It almost killed me...or caused me to want to kill myself. I will not forget the voices in my head while on that drug. I realize it is good for some people...not for me.

I am now on Ropinerole 2mg at 1pm each day and Ropinerole 1mg at 6pm. I also take 10mg of Oxycontin at 11am and 11pm. This combination of drugs is working real well for me as of right now. I know it will probably stop working so well and I will have to switch to something else, but for now...I feel so much better. I can think, I can talk, I can carry on a conversation, I can do things again. I know I am not 100%..never will be. It is just part of this disease and I get that and I understand that..now. I also did 3 sleep studies and after all was said and done I have mild sleep apnea...could be from the 50+ pounds I gained while on Pramipelole...but whatever the reason I now have a CPAP and I am sleeping at night. I only get 6 hours but that is wonderful and I am rested and it is so much better then the 2-3 I was getting for the last years.

It has been a struggle....I have screamed and cried to all sorts of doctors and insurance companies and drug companies and I know that I will continue to scream, yell and cry to more...it is how it is with these people. Nobody understands this disease and nobody wants to help until you yell at them. So I do. Although all the yelling in the world didn't help me to get the iron infusions I am supposed to be getting. Couldn't get the insurance to budge on that one. They say my ferritin is fine...2 doctors say that it isn't fine but it is up to the insurance co. Their words to me were I was not sick enough. I needed to have my blood drawn monthly till my ferritin gets to the lowest that they say it needs to be. I told them to stuff it. I started juicing and using lots of spinach in my smoothies. I am trying to get my iron from foods. We will see what happens. I just didn't feel like fighting anymore.

I have to drive for two and half hours to get to my doctor...or I should say my husband drives me because that is just too far for me to drive taking the Oxy and Ropinral. I get sleepy...that is my biggest complaint now...I am sleepy. But not going to complain. At least I am sleeping. My doctor is at University of Michigan and she is wonderful. If anybody is in the area...Cathy Goldstein is her name. I love her. I have been in contact with her through the whole nightmare. All I have to do is email her and she always gets back to me within a day or two. She has gone to the wall for me. I am convinced now that is the way to get through this...with a good caring doctor. You must have a doctor that you trust and one that is willing to step up and help out. unfortunately they are few and far between these days.

So I am back and I hope I can be of some help to others. Some encouragement to keep going to keep pushing through it all. There is a light at the end of the tunnel and it isn't always a train.

Thank you all again for all your kind words. I did read them all. I just couldn't respond at the time. I read them and I cried and I read them and I tried to understand that I wasn't alone. That is important...we are not alone. There are others out there like us. Some of us happen to get this with the full force and it is relentless but we can make it if we help each other out. I am here if anybody ever needs a shoulder.

Love this site and the people on here. You have all been so great. Thank You, Thank You, Thank You all from the bottom of my heart.