the problem with my pain management..

[Ashelen]

So I've had very bad migraines my entire life....as long as I can remember. they worsened and increased in frequency as the years went by until I was pregnant with my daughter; for the first time in my life I had several months completely free of migraines from right before delivery to a few months post-partum. then they returned, bad but manageable with the right combination of abortive meds and "rescue" opiates (usually lortab).

then I got pregnant with my son, and the headaches got worse and closer together again until they were daily, blinding, and would floor me in agony. my OB was wonderful and responsive and we managed my pain very well, and my son was born healthy, full-term, and without withdrawals.

Right after my son was born I returned to my neurologist for treatment, who I've been seeing for the past 10 years, since he's a head pain specialist. Right after my son was born my OB prescribed Endocet 10/325, 1-2 every 4-6hrs as needed for the headaches and he gave me a 15 day supply so I could have something for the pain until I managed to get an appointment with my neurologist. They couldn't get me in until something like 25 days post-partum, but I was quite able to stretch the script to last that long because I NEVER took 2 at once, and I never took them less than 6 hours apart...and when I got to my neurologist I requested something a little weaker, because I wanted to be able to not feel sleepy or loopy.

He prescribed Norco 10 for me, which worked fine..the duration was a little short 2-4hrs and I was only allowed to take them every 8 hours, but they WORKED. He's been trying all sorts of abortive meds on me (relpax, maxalt, imitrex, treximet, topamax, lamictal, frova, beta-blockers, etc)...but I can't take SSRI's because I have allergic dystonic reactions to SSRI's and anything in the category of phenergan now.

I told him that the Norco was working, but that I would rather step down to something a little weaker. I think he just got tired of dealing with me and gave me darvocet. I refused the script because darvocet makes me throw up and it's a horribly toxic medication IMO. also for the last week i've been calling his office every day trying to get him to call in a new abortive since the last one didn't work and he TOLD ME he wanted me to try another one...but because I needed an authorization form for an override for the abortive they've been dragging their feet....and in place of the darvocet he called in Tylenol #3 which is in my chart as MAKING ME VOMIT.

ugh. so here, today, I cut directly back from the Norco 10s to T-3's....and I've been doing just fine because I never abused the Norcos, but I was taking them every day (which he knew) so I'm a little twitchy and uncomfortable, but nothing too bad ...my PROBLEM is....the pain in my head is EXCRUCIATING.

I'm in tears because my head hurts so bad, and it's not a withdrawal or rebound headache (been there done that in years past) and the abortive med won't get approved until sometime next week because the doctor took so long to get the authorization form in....and the insurance is now dragging THEIR feet.

and all I've got is Tylenol #3. I need to ask for something stronger, but I'm terrified to. In the past, I have VOLUNTARILY asked for my pain meds to be lowered or lessened because I'm very very careful about not becoming too dependent...I'd rather deal with a little pain than not be able to go without, you know? So I would HOPE he's not going to think I'm drug-seeking...but because I've had to call so much this week, I'm so afraid of what he might think...

I am a VERY non-confrontational person and I'm literally shaking in fear thinking of calling him tomorrow morning and letting him know that the T-3 by itself and without an abortive is just NOT touching the headache pain....

please, I need some support and advice on how to approach my doctor. I really am a wreck thinking about what I'm going to say that won't make me look like a drug-seeker. he has no reason to think I am one, but at 25 and a chronic pain patient I'm incredibly careful about making sure my doctors know where I'm at and where I stand....and I'm just afraid that this situation is going to paint the wrong impression and mess up the careful rapport I've got with my neurologist where he trusts me and I trust him to help me with my pain....

help :( what do I say? do I say anything or just suffer through the long weekend until tuesday? 2 T-3s a day to handle the pain that abortive meds and 3 Norco 10's a day were covering....I just don't think I can manage my pain like this?

idk. but i'm frustrated, and hurting, and quite scared of having to call :(. can't get in to see him until sept 30th. do I just "deal with it"? hard with 2 kids under age 2 to watch....but I'm literally queasy thinking of calling again because I just know his receptionists are irritated with me calling every day this week about the relpax...idk some advice and support would go miles right now...

thanks so much and sorry for the novel!
-Ashe

[lindsaylinn]

That's great Ash! So glad you went ahead and made that call. I was wanting you to because didn't want you to be in bad pain all weekend. Yes please do stick around, need your knowledge here esp about migraine pain. Take care hon :)

[Ashelen]

update: i don't know if anyone's still following the story, lol...but I just got off the phone with my neuro and he's going to call in some Norco's for the weekend....I'm so relieved I can actually hopefully enjoy this time with my family without being in agony...and next week we're gonna retry the Relpax therapy combined with Tylenol #3 because my ultimate goal is to NOT be using strong narcotics....fingers crossed that it works and I don't have to go back on a higher dose of rescue med, but I'm hopeful.


thank you guys for your support and suggestions and everything...like I said I hope to stick around the board and maybe there's someone I can help with my story.

[Ashelen]

Well I did it...shaking and all..but I woke up this morning with a headache so bad I threw up for 45 minutes straight and all the blinds are drawn in my house...it's nearly 10AM and I still haven't woken my kids because I hurt so bad...and yes I know I'm blessed that they'll sleep this late, lol....

at any rate, I called...and I got the nice receptionist...she's going to have the dr call me later today...crossing my fingers. maybe if nothing else he'll call in a few days of a stronger "rescue" med and/or give me some Relpax samples until the script is approved by my insurance...I basically said that I think if I had the relpax and the tylenol#3 together that it might work...but alone it doesn't do hardly anything for the pain.

here's hoping. thanks so much guys you got me through my chicken-out and I'm glad I called because I was really looking forward to this long weekend with my husband and my babies...and I really hope that a solution is in the making right now.

thanks again..I plan to continue to visit this forum maybe there's someone with migraine pain who I can help with my story or vice versa....and I'll update later today once the neurologist has called but right now my head hurts so bad if I don't go close my eyes my skull is going to split open .not literally but you know what i mean

thanks again (for like the 5th time, lol) and thanks for the luck Sara I hope it worked :)

[Sarajmt]

I do wish you luck.  And that's a smart call to write everything down.  Inevitably we go in and then get home and remember about 10 more questions we meant to ask.  Not to mention that with small children you are probably so tired, you do well to remember anything!  At least I can't remember things well when I'm very tired.

So good luck tomorrow.

Sara

[Ashelen]

Thanks everyone, I really really appreciate the replies and suggestions...once again, every thing you guys are saying to me is helping because it helps me feel like I'm not insane.

I'm calling the doctor tomorrow morning first thing...I've already written out what I'm going to say (is that crazy?) so I don't get nervous and forget something or say something I didn't intend and sound like an idiot...I do that on the phone quite frequently even when I'm NOT petrified of the person on the other end.


I always keep the ER as a last resort (as in I'm blind from the aura and the pain is so bad I'm gasping in bed and/or throwing up...which happens a lot more than I care to admit), and I've been for migraines before...usually they're over-the-top helpful and just throw meds at me but I know that every time I go it's getting put on my record and even the most helpful doc would eye me sideways if I had 10 visits for migraines in a year, you know? So I'm doing the best I can to manage at home...

I may also call my OB tomorrow since he treated me for the headaches and I was only JUST released from the post-partum period (my son is 7wks old yesterday, so I was under his care until last week legally) so he may very well be able to give me the referral to a PMP...but since I'm not sure how long that would take to process, I'm going to try to stay on my neurologist's good side and hope we can work out something that I feel is adequate and he feels comfortable with as well.

I just feel like an idiot asking him to take me off of the Norco 10's. I mean it was working, I'm just so paranoid about being stuck dependent on such a high dose of meds that I wasn't thinking about the fact that my pain is the worse that it's been in a LONG time...and now I may have shot myself in the foot with it, because asking to step up the meds NEVER looks good.

wish me luck everyone I'm gonna call as soon as I wake up and hope he actually gets the msg before the weekend starts....

[houseofgirls]

I don't think it matters what type of doctor refers you to pain management.  My new OB is most likely going to be referring me to pain management, not my primary dr.  If I decide to go that is, lol!  

I do know how horrible migraines are.  I am lucky that I only get them every few months or so.  But when I do, the only thing that has helped me is either vicodin or tylenol 3.  I can't take the abortive drugs like imitrex and all those, they make me really sick with side effects and I end up with an even worse migraine the next day.  Which definately stinks, considering that my migraines only usually last no more than 24 hours!  

On another note, as Peekawho mentioned, maybe you should go to the ER.  I went this past summer for abdominal pain that was so out of control I could barely walk.  I too was worried that they wouldn't care because I had been having abdominal pain for awhile.  But it was early in the morning and my Dr wasn't open.  I felt like the pain was so bad that something must be really wrong.  They got me back to a room right away, did the tests they needed to, and gave me pain meds.  Even gave me a prescription so that I would be OK until I could see the doctor.  Definately were very caring towards me, and even told me I didn't waste a trip because at least I could get my pain under control even if I didn't have any real answers.

[Sarajmt]

I don't know about Florida but in many states, your OB can refer you to a Pain Management.  Or whatever doctor you're using can do it.  

I have no idea what to tell you other that to see a PMP.  But having babies in the house and suffering from this type of pain must be horrible.  I really feel for you.  But do see if you can get someone to refer you to a pain specialist.

Good luck sweetie,
Sara

[peekawho]

Ashelen,

If they won't/can't get the message to the doc, would you consider going to the ER?  I know it feels like a last resort, but if your pain is that bad, that's where you may want to consider going.

I went this past spring once, and I felt so embarassed and ashamed.  I felt like I probably had a big sign on my back saying DRUG SEEKER.  I felt like I wouldn't be believed, and the nurses would all roll their eyes at me while the doctors grilled me about why I wanted narcotics for "back pain".
I couldn't have been more wrong.  I was seen quickly, and pain medication (Dilaudid) was given the minute the doctor ordered it.  Everyone was extremely caring and acted concerned.  
Before I left, the ER doc even asked me if I needed an RX to get me through until I could see my doctor.  Everyone there was more than kind, and very professional.

I understand that's not everyone's experience, but if you are left in a lurch by your the office staff at your doctors office, it could be one option.  Pain deserves to be treated.  

[Ashelen]

Thank you for your suggestions :). I've tried midrin and imitrex as well...all of the abortives helped to some degree, but unfortunately it would've taken an unsafe level or frequency of them to alleviate enough pain to make them worth while...I haven't given up, but I'm starting to see the end of the list of possibilities draw closer.

I know they're open tomorrow because my husband called today telling them that he felt like it wasn't fair that I was hurting so bad and asking if they would please try to see me before the 30th...and they couldn't, but they said to call tomorrow if the Relpax hasn't cleared the pharmacy (the pharmacy manager told me it wouldn't) and see what they would do...


my husband will be home from work tomorrow so hopefully he can sit next to me when I call and give me some moral support...Heaven knows I'm gonna need it, I'm such a wuss.

[lindsaylinn]

How I hate dealing with office staff or nurses who take our pain so lightly. I know what you mean hon about them possibly putting you off/being dismissive and non-chalant.. I do hope your doc is in tomorrow because today I called mine and their office was closed.. Guess they are taking an early labor day vacation :( Ok, there was a med that helped me some when I had migraines which was midrin (spelling fuzzy) also when imitrex injections came out they helped. I did have to take narcotics back then as well.

[Ashelen]

That is the situation, yes...and I guess the only thing to it is to do it...just gotta get the guts before tomorrow morning...

Right now my migraine is in a lull which is why I'm on and typing so much (normally mid-migraine I'm typing like a kindergartener lol).

Yes, they've done MRIs and CT scans, they've done X-rays and blood panels (full blood panels including hormone level tests, thyroid scans, etc). they've done every test known to man, and even suggested that it's a combination of hormonal migraines, cluster headaches, and tension headaches (not to go into too much detail but I'm a 36EE so I've got a lot of weight bearing down on my neck and shoulders)...which means that unraveling the source of my pain is near to impossible because if one thing isn't at play, another thing is.

I sure hope he listens to me....but probably it's just going to be a case of the nurses saying "we'll give him the message but he might not get back to you until tuesday" because they tend to be dismissive like that....do I have the right to insist? i don't really know my rights at all...I've always kinda lived in denial hoping that I was just going to be a short-term pain patient and they would ebb sooner than later..but I guess I Need to start exploring my rights and options :-/.

thank you for your reply..I appreciate any and all advice and replies...it's keeping my mind off of things for the moment and that's ALWAYS a good thing.

[JadedSweetheart]

Oh, I'm so sorry to hear about your terrible on-going migraines.  I get them every couple of months or so and that is too much for me.  I hate them.

So you've called the doctor every day this week about the abortive med, but not about the emergency med.  Now you need to call him about the emergency med because it's not strong enough, even though you asked for a weaker med previously.  
If it were me, I'd call and just tell him the whole situation honestly.  That you are in a lot of pain and the T-3 isn't cutting it.  Then tell him that the Norco was working bettter and he was right about it and you wish you hadn't asked for a weaker med.  
From what you've told us, I believe that is the situation.

I know you are probably having terrible pain from the migraine right now, so I don't know if you'll be able to answer, but I wanted to ask if your Neurologist has ordered any tests or MRI/MRA of your head and brain?  If not, it may be a good idea to have some tests run to see if they can find out why you have the migraines so frequently.  They could also be hormonal, though, so maybe getting a full panel blood work would be good too.

I hope you are feeling better soon!  Please call your doctor and let him know what's going on.  Don't worry about the length of your message, it was very informative and well-written.

[Ashelen]

Tank you for replying...that's how I was viewing the situation but I'm sure you know what it feels like to doubt yourself when it comes to pain management...I'm so frustrated and I've gotten to the point where we've tried nearly every common and uncommon treatment for migraines (including acupuncture, vitamin therapy, diet changes...etc) and I wear sunglasses every time I step out of my house, even if it's cloudy out...and every light fixture in my house has half of the lightbulbs it's supposed to because my head hurts too much in bright light.

I think I'm to the point of needing to be referred to a PMP but I don't have a PCP right now (my Ob was my primary during my pregnancy) and the only doctor I see is my neurologist...and idk how to go about asking him to transfer me, or even if he will. I'm on an HMO and they only have one PMP in their system as well...so I have noi dea how that would work. my neuro is out of my HMO's system but they still approve payment for him because he's been my neuro for so long...

i don't know..you're right, I'm probably going to call first thing in the morning, but the part that frustrates me about this all is "this SHOULD help you" doesn't mean it DOES....and then I'm stuck until my neuro decides "it's been long enough, we can try/prescribe something else" with the headaches...

tylenol #3 is what I took at the very beginning of my pregnancy for the migraines when they weren't very strong....they're doing NOTHING now, especially without relpax, which at least lowers my pain 1 or 2 points..and I definitely have a history of being responsible with my meds (not finishing scripts early, voluntarily reducing dosage and frequency) but because I'm so young and I DO have to reply on opiates (I know I'm not the only one on here to HATE having to rely on opiates, too) I've got to be sooo careful about how I approach them and how they view my requests.

i hate being so young and having to deal with this crap...I wish I was like my friends who could take an excedrin migraine and knock out the pain.

[lindsaylinn]

Although I can't tell you what you should do, I would tell you what I would do and that is make that call! I mean, you already have a track record of NOT abusing your medications. Now I understand that you are afraid to call and have to deal with those nurses but when you get on the phone tell them that you HAD to call NOW only because you cannot suffer through the weekend. That is at least what I would do. They will do nothing for you or else help you and get you some relief. I know how it is hon. I had migraines until my early 30's and they just went away after that. Hopefully that might happen to you too. I sure hope so. You don't abuse the meds so I don't think there is any reason to fear calling them. On the other hand if you don't call them you just might end up in the E.R and I know you don't want that if you can avoid it. Later and take care of yourself let us know what happens