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Problems with Demerol

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Posted 9/12/2007 2:19 PM (GMT 0)
Good Morning.  I have a question about taking Demerol for Migraines.  Let me explain  and sorry if this gets long.  I usually go to the ER when I have a migraine.  I get Decadron, Toradol, Zofran and Dilaudid.  It always works great.  When I saw my neurologist several weeks ago, he suggested that I try going to the Urgent Care Center when I need IV help instead of the ER - it would save money and time.  I have been to the Urgent Care in the past and they are great; however, they don't have the Dilaudid and until recently, never had Zofran - only Demerol and Phenergan.  The times that I have had those two meds, I have hated it because they make me so drugged out, tired and irritable but they would decrease my headache, although not get rid of it altogether.  The meds in the ER would always get rid of the headache completely without making me drugged out - I also was able to use much less of the Dilaudid than the Demerol.  I called the Urgent Care after seeing my doctor and asked them if they could order Dilaudid.  They thought they could if they had a prescription from my doctor - my doctor wrote a very specific script about which meds (Zofran, Decadron, Toradol and Dilaudid), amounts of meds, how many times they could be repeated and how many times per month (he was very generous as I have never been more than every 4-8 weeks).  I took the script to the Urgent Care and thought I had everything in place.  Yesterday, after two straight days of vomiting and migraine, my friend took me to the Urgent Care.  On the way there, she called just to make sure that they had my meds.  They told her that they were unable to order the Dilaudid but they would be glad to treat me with all the other meds and Demerol. 

I went on and went to the Urgent Care and the Demerol has actually made my migraine worse.  I could tell the second that they gave it to me that my pain increased and went from one side of my head to all over.  I thought maybe the second dose would help but it only made it worse.  The Dilaudid never does this.  I am wondering if anyone else has had this experience.  I absolutely hate taking all these stupid meds (which is why I waited for two whole days and why I didn't take all my oral meds after working the night I got my migraine like my doctor tells me to do) but taking them and either not getting any better or getting worse (although, at least the vomiting stopped) is truly frustrating. 

My goal is to not take any meds except my daily preventatives but every time I try, it ends up being a disaster.  I end up losing several days of my life and having stronger meds via IV.  I also tried the Immitrex injection for the first time yesterday and thought I was going to die.  My chest felt like I was having a heart attack, I couldn't get a deep breath, my heart was racing and my brain couldn't process.  I was home alone and I wanted to call my friend to come get me and I flat out couldn't figure out how to dial my phone.  All of this lasted for almost an hour - it was awful!

Let me just say (as I have in the past), when I take my meds as my neurologist tells me to, I do great.  When I do this, I haven't ever had to go to the ER.  The problem is, I feel like the nurse in the doctor's office thinks I am taking to many (even though it says in my chart this is what he has told me to do) and hassles me when I need refills.  I am sick of being treated like a criminal so I keep trying not to take them, thinking that I can handle it.  This is so frustrating.  I just want my life back like it was before migraines.  I am amazed at all of you that have suffered for years and years as I have only dealt with this for 1 1/2 years.  I would pack every pill in my house up and give it to my doctor gladly if I just wouldn't get these stupid headaches.  I don't want meds - I want no pain and my life back!


Thanks for listening and please let me know if any of you have had this reaction with the Demerol.

Posted 9/13/2007 4:42 PM (GMT 0)

Hey Baseballmomof3,

I have a different problem than you do, in that Demerol does absolutely nothing for me.  They can shoot me up, and I don't feel a thing.  I'm pretty resistant to morphine too.  I have had trouble using the walk-in clinics around here because so many of the doctors don't want to use narcotics to treat a bad migraine. 

One clinic labeled me as a "drug seeker" because I got into a head-butting episode with the main doctor there.  He wanted to give me Toradol, and I told him that this particular medication would do nothing to reduce my migraine.  I knew too much information about my migraines and medication. Thus, it was useless to go back to that clinic, because they flagged me as a "drug seeker". 

My last PCP sent a letter to the other walk-in clinic in town stating that I should not be treated with narcotics, which the main doctor agreed with.  However, neither my PCP or the walk-in clinic would show me a copy of the letter that was sent, which really ticked me off.  Thus, I've been doing the ER thing and dealing with hours of waiting and the question of whether I will get a reasonable doctor or not.  The walk-in clinics in my town all use Nubain, instead of Demerol, and Phenergan, which will definitely knock you out.  The best thing for a migraine is to get the medication and sleep through it.  With these meds though, you should wake up in the morning and be functioning.

I just recently changed back to my old PCP, who first treated my migraines in 1978.  He let me go back on my old preventative, Stadol Nasal Spray, which is the ONLY thing that has ever worked for me.  He is being very conservative with the dosage he prescribes.  He wants me to streach out a bottle from two weeks to a month.  That's just unreasonable, because my triggers are environmental or hormonal.  I can't control the weather.  He's also letting me have a little Lortab for breakthrough pain, but the dosage is so low that it goes really fast.  Plus, everytime I talk to my parents, they ask me if I'm out of my medication yet, even right after I've gotten a refill.  They treat me like a total irresponsible child, like I should call them everytime I have to take a hit of my abortive.  It's insulting and makes me mad as heck!!!

I saw my new/old PCP about two weeks ago, and he filled out a Emergency Treatment Form, detailing what medications I should be given when I get a migraine.  Much less hassle.  Here's the link if you want to use the form too:

http://headaches.about.com/library/forms/f-emerge-doc.htm

It's a great tool to avoid hassel, and I carry it with me all the time.  In fact, I got it laminated, so it would hold up well, and it is especially good to have if you have to seek treatment out of town. 

Give it a try and see if it doesn't help out.  Let us know if it works for you.

Leigh Ann cool

Posted 9/13/2007 7:26 PM (GMT 0)

Hey Leigh Ann:  I completely understand how you feel.  The thing that makes me the most angry is that I have been trying to take Lortab with all my other meds instead of the po Dilaudid (taking it as my neurologist has told me to) and when I had the pharmacist call for a refill, the nurse told the pharmicist that it was too soon.  The pharmacist called me and told me what they had said and also told me that she didn't really know what the right amount of time would be to ask for a refill.  She said that I was way past the time of taking it like the doctor had instructed (1 pill every 4-6 hours).  It is so confusing.  So, now I am taking the Dilaudid.  I honestly thought I was doing good by trying to take the lesser of the two narcotics but.......what I don't understand is why, when you do what your doctor tells you to do, everyone treats you like a criminal?????  I am so frustrated I could scream.  I thought I had a solution for when I needed IV meds (which I seem to only need when I don't or can't take my po meds because I am trying "not to take them too much or too often") by having the Urgent Care all situated with a prescription and letter from the doctor.  Now, however, I guess it will be back to the ER.

I will print this form (thank you!) and have the doctor fill it out.  At least then, I can take it to the ER.  So far, I haven't had any problems with the ER, but I am sure if I go too many more times, there will be.  The frustration of all of this is killing me.   I have not gotten rid of this headache since Tuesday - I swear, the second I had the Demerol, it made it worse.  It is not horrible now (no vomiting) but is just pounding 24/7.  I keep taking Relpax (2X/day) but so far, nothing (just feeling exhausted).  When I get the Dilaudid IV, I have always had immediate success and never feel drugged (in other words, I don't miss my life for hours or days).

Anyway, sorry to ramble.  I feel like screaming but I guess that would only make my head worse lol!  Hope all is well with you.  I miss seeing you on here when you aren't on.  Let me know how you are doing.

Posted 9/14/2007 4:15 AM (GMT 0)

Hey Baseballmomof3,

Going to the ER is absolutely the worst.  It takes anywhere from 2 to 8 hours to be seen by a doctor.  In our Emergency hospital, it has two sides, an Emergency side and an Urgent Care Side.  Urgent Care opens at 8:30 in the morning, but the doctors don't show up until about an hour later.  That way, all the bays are filled up with patients.  There is no way to predict how long you will get stuck waiting.  When the doctor finally comes in, it's a crap shoot which doctor it will be.  Some of the doctors recognize my name and check to see how many times I've come in with a migraine.  They don't examine me or ask any questions about what symptoms I am having.  They just tell me I've been to the ER "x" number of times, and that's not the appropriate way to handle migraines.  They don't believe in using narcotics to alleviate a migraine.  They think I just a "drug seeker" looking for a fix. 

I sure as hell wouldn't wait all that time to get a shot with barely enough medication to make my migraine go away, if I was just "drug seeking".  My doctor signed off on my form when I listed what it took to stop my migraines.  He didn't have any problem with it.  My Dad laminated it, and I carry it with me at all times.  I also carry a laminated card with all my current medications w/ dosages, because since my time on TOPAMAX, I can't remember details like that anymore.

In addition to my migraines, I also have chronic back pain.  I have a whole boatload of problems from one end of my spine to the other.  My orthopedic surgeon says that I will need to have the base of my spine fused, but wants to put it off as long as possible.  He defers to my "pain management" doctor to treat my back pain.  My PM doctor doesn't believe in using narcotics, which is the only thing that gives me any relief.  I've spent three years getting epidural shots and nerve blocks, which give me no relief.  I can't take any NSAIDs, like Ibuprophen, Aleve, or aspirin anymore, because I have an internal bleeding problem in the location I had my gastric bypass.  I am in agony all the time, I can't spend very long on my feet, and my Dad has to do things like do my laundry, take the trash, carry anything heavy, etc... I can't even load or unload the dishwasher without major back pain.  If I do something like that, I immediately have to sit down, and the ripple of pain that goes up my back is incredible.  I can't seem to get my doctors to understand that I have no quality of living.  I asked my PCP if he could prescribe something like Fentenyl patches, so I would keep a constant level of medication in my system, so I could actually get around and do things.  He said NO, saying he would only prescribe something like that to someone with cancer.  I just don't get how some doctors prescribe the appropriate pain meds to give the patient a decent quality of life, and others won't take the responsibility.

Well, I've got to get off my high horse now.  I have to continue trying to pack up my townhouse to move in a couple of weeks.  It's doing wonders for my back.

Leigh Ann cool

Posted 9/16/2007 2:08 AM (GMT 0)
I dont understand the idea that only someone with cancer deserves proper pain treatment. First of all cancer does not necessarilly equal death so the idea that all cancer patients are on their way to the afterlife and therefore they are allowed pain medication seems absurd to me. Second of all just because someone is diagnosed with cancer does not mean they are having more pain than someone with some kinds of chronic pain, esp. if the cancer is in its early stages, in the late stages of cancer, yes cancer is more painful than just about any other condition, but in the early stages, it often is not painful at all for some people. For this reason it makes me very angry that doctors make a distinction between cancer pain and other types of pain. PAIN IS PAIN. Someone can have pain equal to a cancer patients or greater but becasue they dont have a CANCER, they are not allowed the medications that make their life bearable, much less make them functional. This is one reason many people with pain turn to street drugs and buy prescription pain meds illegally, or even get addicted to herion, to self treat their pain, all because, since they did not have cancer their pain was not worth being treated.

This is in no way meant to degrade the pain and suffering of cancer patients, my grandfather died from pancreatic cancer and it was terrible watching it and my other grandfather has prostate cancer, I do not mean to say that cancer pain is not severe. I only mean to say that other pain can be as great as cancer pain, esp cancer in the early stages, and for some reason doctors will not recognize this fact.

I hope that everyone has a painfree day and CRANKY I hope that you can find a doc who will give you proper relief so you can get on with your life.
Circa
Posted 9/17/2007 7:01 AM (GMT 0)
baseballmom,
I'm so sorry you had that experience. Demerol always gives me a headache and makes a headache worse if I already have it.
Have you ever tried Nubain or Stadol (im or iv)? these work well for migraine pain. Recently my jaw has been dislocated and I get diladid when they sedate me, and it really makes me sleepy. unless they only use 1 mg, then i'm fine.
Your lucky your urgant care, not just ER, give IV meds. Even at the ER, they won't give you IV meds where I live. Your lucky to get a shot IM.
I will say when I used the ER form filled out by my doctor, it did help alot. He specially wrote that toradol doesn't help, so I was able to bypass that one.
Also, as long as you and your doctors are getting along well, don't worry about the nurses. My PCP is great, but his nurse will put words into his mouth sometimes. ONe time she told my mom to take me to a detox/rehab when I wanted a refill on a med, saying my doctor said this, well we talked to him and he said he would never suggest such a thing for me.
I will say this nurse is very good at what she does, but she gets too involved sometimes. So I just tell her as little as possible and try to talk directly to the doctor, even though sometimes that seems impossible.
I just had a Life Port Place (its like a permanent IV that can be accessed anytime) b/c of my recurrent dislocations. Its great! The last time in the ER they stuck my 5 times int he neck alone, and hit an artery! So after many months of begging my PCP ordered the port. I used it for the first time yesterday, one stick and that was it. Just thought I'd share.
My advice would be don't worry about what people think, or the stigma attacked to your pretreating program, and if it works for you go for it! You seem really lucky to have a good neuro and doc supporting you. That is lucky.
I really enjoy your post! Let me know how your feeling. Maybe you should list demerol as an allergy or causing an adverse reaction.
Best to you my friend,
Ang
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