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        Cluster Headache Help and Support >> Cluster Headache Specific >> I am not a friggen druggy!
        
(Message started by: Mattrf on Jun 7^th, 2006, 11:03am)

Title: I am not a friggen druggy!
Post by Mattrf on Jun 7^th, 2006, 11:03am

Well if you don’t know me or have read my posts I will start by saying I do not have CH but have something similar called SUNCT and the people here have been nice enough to let me stay a member.
Now the vent, I changed doctors because my neurologist was just pushing pills at me and was not concerned enough to try and fix me, oh and he thought I had CH. So I changed to a headache specialist and he said I had SUNCT and my symptoms match it dead on and he started me on new medication that seems to help so far. He told me when I first saw him that he wanted my neurologist to continue to give me my pain meds, strange but ok.
I get a message from my neurologist two weeks ago saying he is leaving the clinic and I would need to get my pain meds from my headache doctor from here out. So I call him and he says I need to come in so he can write me the script, ok so I go in and he has me sign a paper saying that I agree to not use any other drugs but what he prescribes and to only use one pharmacy that I designate and that I am willing to take a drug test when ever they want me to, WTF! So when did I become a friggen druggy?
So I am like ok what ever he seems concerned about getting me better so I will sign anything And I have never been a druggy and don’t use any drugs but what is prescribed anyway. So he give me the prescription and says it should last until the next time he sees me, I am thinking ya right, I know it wont but what ever. So I see him tomorrow but my meds are going to run out today so I called in a refill yesterday and they call him and he immediately calls me and is like, why did you call in a refill, I thought we where going to get you to reduce the amount you are taking and that should have lasted you, oh ya and I don’t approve refills over the phone you have to come in and see me. Again WTF!
I don’t know what my neurologist told him or why the hell he is treating me like some druggy off the street but I am seriously pissed right now, I hate having my integrity questioned, shit I am sick and have been dealing with this constant headache for six months and the pain meds are the only thing that gives me some relief and helps me keep my sanity, I have already been dam near suicidal over this and it scared the crap out of me and that’s why I changed doctors now this crap!
I know if I give him crap about it but it is only going to make him think more that I am just trying to get drugs, I have another three months to go with this if it stays on the same track as last time and the thought of having no help to cope with it from the pain meds scares me, so what the hell do I say to him to make him understand without confirming what he thinks? I would like to ring my neurologist neck for what ever he told him, it’s funny the last time I had this my neurologist gave me Vicodin ES and Percocets and this time when he offered the Percocets I turned him down and said the Vicodin would be enough, does that sound like a druggy?
Like it is not bad enough dealing with this with out this kind of crap!
[smiley=bash.gif]

Title: Re: I am not a friggen druggy!
Post by E-Double on Jun 7^th, 2006, 11:24am

Research suggests that the meds you are using should help in addition there is success using corticosteroids.
Have you done so?

I have not found information regarding use of "pain meds" so I can not help out.

Are you getting different headaches when not using the pain meds?

Or

Do you find an increase in the TACs?

Title: Re: I am not a friggen druggy!
Post by Katherinecm on Jun 7^th, 2006, 11:25am

When I switched to a neurologist she tried to take me off painkillers too. Apparently they think there is a chance they may cause rebound headaches & make things worse. I tried it for a week, got really upset, and then told her the only way I was able to stay out of serious depression and suicidal thoughts was to have my pain controlled. I pointed out that this is one of the most painful conditions and that as a patient I have a right to have my pain controlled. I said that in a tone of voice that implied I would either file a complaint about her or find a different doctor if she didn't take me seriously. I said as soon as she found something to prevent the pain that worked I would stop taking painkillers, but not until then. Besides, for me it was things like Imitrex that obviously triggered rebound attacks. Narcotics do not- I got attacks whether I was on them or not, but they made attacks more tolerable. That seems to have shut her up, she now gives me whatever I need, with some occasionally irritating questions about how much I am taking. I figure that's for my own safety anyway.

Sometimes you just have to put your foot down. If that doesn't work don't forget they are working for you. Find a different doctor. Or perhaps a pain management clinic.

Title: Re: I am not a friggen druggy!
Post by E-Double on Jun 7^th, 2006, 11:30am

on 06/07/06 at 11:25:30, Katherinecm wrote:

(modified to delete duplicate entry)

Ya could just hit the remove button [smiley=laugh.gif]
I needed the laugh thanks!

Good luck Matt

Title: Re: I am not a friggen druggy!
Post by Mattrf on Jun 7^th, 2006, 11:43am

I work at a medical research clinic at Stanford so I am asking our head researcher how to deal with this doctor, he knows me well enough to know I am not a druggy so maybe he will know how to approach this guy and make him understand that I just need help until the pain is gone and I am by far not using them to have a good time, there is nothing fun about this and it makes me want to slap him if that’s what he thinks.

Title: for what its worth
Post by Karla on Jun 7^th, 2006, 12:27pm

I have had to change drs 6x in the years that I have been on the patch or methadone. My dr not my neurologist/ha specialist perscribes that. I have had to sign a statement for all the drs saying that I will only take what is perscribed, only get it filled at one pharmacy, not share meds with anyone, and if they are lost or stolen they will not be replaced. This is a standard form for all to sign. My neuro said since you need to see a dr every month to get the script written and filled you need to have the dr do this and not the neuro. The neuros don't have the time to be seeing patients on a monthly basis to write scripts. Try not to take it personal. Simply tell them you have built up a tollerance to the pain meds and need something stronger or you need something that lasts longer and in detail explain I get x number of ha a day and that requires x number of pills. You are only giving me x number what am I to do? It should work out for you. Try not to take it so hard and personal. Your experiencing typical average doctoring.

Title: Re: I am not a friggen druggy!
Post by unsolved1 on Jun 7^th, 2006, 1:26pm

I had to sign a 'narcotics contract' too. It helped for awhile, but then seemed to make things worse. I'm not taking any more narcotics unless I'm in the hospital.

Goodluck dealing with these docs !

UNsolved

Title: Re: I am not a friggen druggy!
Post by Charlotte on Jun 7^th, 2006, 2:01pm

My concentration is low so forgive me if I missed something.

Sometimes I took a blood test to see if the medication was at the right level, and other times just to make sure it wasn't toxic. It did not matter if it helped me, personally - they just wanted to monitor the level of drug in the blood.

Some of the rules may originally have been for the patient's benefit, but then the powermonger factor comes in.

I hate it when they treat you like a druggie. I've been accused of being a druggie for asking for meds and accused of being uncooperative for not taking meds that didn't work.

Good luck, and I hope it works out. Try not to let it get your goat, but don't let anyone deny you your meds.

Charlotte

Title: Re: I am not a friggen druggy!
Post by pattik on Jun 7^th, 2006, 2:24pm

This link has only a little info about narcotic use, but according to the Michigan Head Pain and Neurological Institute in Ann Arbor, only 25% get results from narcotic use.
http://www.ouch-us.org/medications/narcotics.htm

Title: Re: I am not a friggen druggy!
Post by kcopelin on Jun 8^th, 2006, 12:50am

And that 25% should be able to get relief. For 24 years I absolutely refused any pain meds-all the docs wanted to give me demerol or vicodin. I just wanted O2, and it took almost an act of Congress to get that. Finally, this cycle-after getting suicidal from the pain-I asked for pain meds. Now, they are concerned?! Give me a break-if I was taking enough to get buzzed it might be an issue-but I have a better quality of life than I havd before-less hits-less intense hits and a sense of control.
I feel your frustration, becasue even here sometimes, those of us who do use pain meds are considered questionable. But 25% is 1/4 and that is significant.
kathy

Title: Re: I am not a friggen druggy!
Post by sailpappy on Jun 8^th, 2006, 3:29am

I also know this frustration, I took pain meds for about 3 years and quit them myself because they were no longer affective and I did feel like an addict. I had my private Neurologist call in 3 pain management Doctors to try to talk me into staying on them, I didn;t want to and now the VA has me labled as a substance abuser because I took them in the first place.
I always took them as prescribed and my Neurologist says I am not an abuser. Now I have to Fight the VA to get the comments of a Doctor that talked to me for 10 minutes, stricken from my records and get reevaluated!
I see a huge disparrity in the thinking of some Pain Management doctors, range from no Narc pain meds to over prescribing them. It just depends on the Training and thought process of your doctor. Pappy

Title: Re: I am not a friggen druggy!
Post by chewy on Jun 8^th, 2006, 8:24am

Quote:

he has me sign a paper saying that I agree to not use any other drugs but what he prescribes and to only use one pharmacy that I designate and that I am willing to take a drug test when ever they want me to

Relax. Its called CYA. Any Doc with any common sense will have you sign a contract.

Title: Re: I am not a friggen druggy!
Post by Mattrf on Jun 8^th, 2006, 2:14pm

Well I go see him today and am going to talk to him about it. I also just found out since I am on a three tier PPO insurance that he is tier 2 and that means I have a $1000 deductible so basically I am paying for every visit out of my own pocket don’t that sucks!
I need him to cut back on the visits or it is going to brake me.
I did talk to the head medical researcher at my work and he said about the same thing and said if he does not seem concerned enough about my pain and tries to take me off the meds even though I need them just to shop for a new doctor.

Title: Re: I am not a friggen druggy!
Post by Katherinecm on Jun 8^th, 2006, 6:53pm

Shopping for a new doctor sounds like a good idea... Try to find a neuro who's cheapest in your network (I know this is counter to almost everyone else's advice here, but even a GP could be okay if they have the right attitude and are committed to learning about CH, and researching whatever info you have for them. My GP was great for the first few years, but when it was clear I was probably going chronic she was really frustrated at being unable to help. That was before I found this site, and I didn't know enough to educate myself and even if I had I'm not sure I felt free to educate my doctor). I'd interview them & make sure they have empathy for your pain. I've heard a couple of people have better luck at a pain management clinic- where doctors tend to believe patients have a right to have pain managed.

Title: Re: I am not a friggen druggy!
Post by Katherinecm on Jun 8^th, 2006, 6:54pm

Forgive me if I'm mixing you up with someone... but didn't you try lamictal when you got the correct diagnosis? Is that not helping?

Title: Re: I am not a friggen druggy!
Post by Capt_Deb on Jun 8^th, 2006, 7:00pm

Mattrf, I have so been there!
I am still trying to get a diagnosis for my "condition"--non-stop onesided headaches which intensify with any exertion and a bi-monthly or so "brainwreck." I had brain surgery 3 1/2 years ago and developed these shortly thereafter. Prior to last year, when I started taking Lortab just about daily, I was in bed continuously. The pain meds allowed me to resume work somewhat (I'm a self-employed artist) and have a relatively normal, but limited, life (deaf in one ear and no balance function on left side)
But alas, they seem to have given me an ulcer, triggered by Lortab and Indomethacin , which was that straw that broke the camel's ass!
Living on pain meds sometimes made me feel enourmous guilt about it, even though my neurologist monitors my use of them. My dose started at 1/2 a tab 2x a day and escalated over the year to a whole one 1 or 2 times a day, rarely 3. I'm in the "program" for 17 years and I quit meetings, cuz I felt bad about showing up medicated.
I'm a week cold tukey and my stomach is on the mend (but my head is killing me and no pain meds in the house--got a dose of Imitrex injectable in case of brainwreck--otherwise--ER AGAIN) and my next step is to consult a headache specialist at a major University Hospital (in North Carolina)
I've never been asked to sign anything, but I did get to watch the VA almost kill my PTSD Vietnam Vet brother with percoset for 3 years. They just doled it out like candy for 3 years beacuse he had frickin' wrist surgery!
Turned him into a frickin' zombie. Got to witness true abuse first hand and I'm no where near that. The pain meds just gave me a degree of normalcy that I hadn't had in 2 1/2 years.
Good Luck to us all in trying to have a few pain-free days!
Capt Deb

Title: Re: I am not a friggen druggy!
Post by Mattrf on Jun 9^th, 2006, 12:09am

I went to the doctor today, I told him that yesterday I woke up with a hellashish headache but it mellowed about 10:00 and then came back at about 4:00 so I had a few hours of maybe a 1 or 2 then back to a 6. He asked me if I was out of my pain meds and I said yes, at this point he said well if you are taking six a day you should still have some left, you said you had a good day yesterday? I was like well I took two in the morning then 2 at 4:00 and another 2 at 8:00 and that was a good day!
He said he really wanted me to cut back, I said well as soon as the headaches stop so will I and when I am at a 1 or a 2 I don’t take any it is just that that does not happen to often yet but I hope the new meds will make it happen. He said well you said it was helping I said well yes it is helping instead of the meds just taking the edge off they now actually make it bearable so get off my back! Ok I didn’t say that part but wanted to.
Well bottom line is he gave me more pain meds and gave me one refill and said he wanted it to last two weeks till I see him again, so, so much for the I don’t give refills without seeing you. I just hope the new meds work and these dam headaches go away soon six and a alf months is enough already!

Title: Re: I am not a friggen druggy!
Post by BarbaraD on Jun 9^th, 2006, 7:45am

Let me ask a question here.... Have you tried vaso-constrictors? (Cafergot is my drug of choice - it's long lasting for the most part and works fairly swiftly - there are suppositories that work almost as fast as Imitrex shots).

My PCP tried narcs on me and it was a disaster. I was totally drugged (he decided he was going to stop the pain - NOT!) and trying to handle a Kip-10. That was the last time I took any narcs.

For a number of years now I've never left home without cafergot. I usually try to get to caffeine and O2 at the onset (before a Kip 5-6). If I don't get it aborted at the low level (sometimes it goes from 0-10 without notice) I hit the cafergot immediately with coffee or Red Bull. The cafergot usually aborts for about 8 hours or so.

If you're getting hit that regular - have you tried a round of DHE-45? That will usually "break" a high cycle for me. Most of the time it takes about 10 or so injections (it's better if you can do it IV, but the injections will work in a pinch).

These are just some suggestions to try. And trust me I've tried EVERYTHING. Been chronic since 97.

Hugs BD

Title: Re: I am not a friggen druggy!
Post by Mattrf on Jun 9^th, 2006, 11:04am

I appreciate the suggestion but I actually do not have CH I have something very similar called SUNCT and it does not respond to any of the medications that work on CH.
My headaches last all day they are around the left eye and come in cycles just like CH and my cycle lasts nine months with a little over a year brake between cycles. I don’t get the 45 min high kip attacks like everyone with CH instead I have a persistent bad headache about a Kip 6 all day and I get hot poker burning and ice pick stabbing in the eye but it last no more then a minute but I get these hits up to 40 times a day. I was misdiagnosed with CH and that was how I found this site and when I found out I had SUNCT the people here where nice enough to let me stay, and I still do not know what I would have done with out all the people here and the support they have given me.

Title: Re: I am not a friggen druggy!
Post by Charlotte on Jun 9^th, 2006, 3:58pm

And we still love you.

Does Sunct go in cycles too. Do the dr.s konw even less about it than ch?

I was so hopeful they had a med that worked. Sorry it didn't.

Charlotte

Title: Re: I am not a friggen druggy!
Post by Mattrf on Jun 9^th, 2006, 4:30pm

Yes to cycles and they now even less about it then CH and there are only like 28 documented cases that they have studied. It is resistant to medications same as CH and comes back to get you just like CH so may be it is CH’s evil twin?

Title: Re: I am not a friggen druggy!
Post by Charlotte on Jun 9^th, 2006, 7:19pm

So you are a certified guinea pig. (Friggen guinea pig.)

Charlotte

Title: Re: I am not a friggen druggy!
Post by maffumatt on Jun 9^th, 2006, 8:18pm

your doctor is trying to cover his ass, they are being targeted by the FDA and are scared to lose their practice if they are found to be writing alot of pain meds to people who are either abuseing them or selling them.