Monday, May 28, 2012
Sunday, June 14, 2009 help4mysister asks

Q: Help! Is taking Dilaudid daily and getting shots of it weekly a good pain management plan?

My sister has had migraine headaches since she was a teenager. She is now 38 and her migraines have increased substantially to 2 or 3 times a week or everyday. She has been taking dilaudid daily for over a year now. The doctor (neurologist) keeps on increasing the dosage for her. She also goes in for shots of dilaudid usually twice a week. She is not herself at all on this medication and now it seems like she has to take it just to avoid withdrawing symptoms. How can I convince her or her doctor that the daily pain management isn't working and it seems to have made things 10 times worse. I can't believe this doctor has let it go on for so long. My sister is very strong-willed and doesn't believe anyone can do anything for her. She has tried many medications and I can understand why she has lost hope. I'm so concerned about her health and well-being. She is currently trying to get on long-term disability. She has twins who are 11 years old who I know worry for her greatly. She is so resistant to trying any new drug or alternative therapies in addition to a program and has the attitude that she knows it all. What can I do to help her? She does have Blue Shield insurance. Any suggestions would be appreciated very much. Thank you

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Answers (3)
Nancy Harris Bonk, Health Guide
6/16/09 8:20pm

Hi help4mysister,

 

No, taking Dilaudid every day is not a good plan for your sister or anyone else. See here's the thing - it only masks the pain of Migraine disease - a genetic neurological disease. Long term opioid use(like dilaudid) may lead to Medication overuse headache(MOH) and/or Transformed Headache (TM) and even changes in brain chemistry with long term use. And I'm sorry to say that pain specialists generally aren't a good solution. Very few of them know much about Migraine. Their primary goal is to manage pain, but that's not the best goal of Migraine management. As you know, it's just as important to prevent Migraines as to treat the pain and other symptoms. Pain management specialists seldom know much about Migraine prevention, Migraine abortives, and total disease management.

 

Taking Migraine any kind of pain med more than two days a week, a big part of your problem may well be medication overuse headache (MOH), aka rebound. See Medication Overuse Headache - When the Remedy Backfire for more information son this. If you're in an MOH situation, nothing you take is going work, neither prescription nor "natural" medications nor over-the-counter. If that's the case, you need to work with your doctor to stop the medications causing the problem.

 

ANY use of opioids or barbiturates and frequent use of triptans and NSIADs are associated with increased risk of transformed Migraine. See Transformed Migraine - Risk Increased by Some Medications for more information on this.

 

Seeing as your doctor isn't able to help your sister, it may well be time to consult a Migraine and headache specialist. It's important to note that neurologists aren't necessarily Migraine and headache specialists. Take a look at the article Migraine and Headache Specialists - What's So Special? If you need help finding a Migraine specialist, check our listing of Patient Recommended Migraine and Headache Specialists.

 

I hope your sister comes and takes a look for herself at the site. We have another spot you may want to check out, the forum where you can find support from other members who have been where you are. You can find the forum HERE.

 

Good luck keep us posted, ok?

Nancy

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6/17/09 4:34am
Thanks for your help Nancy! I really appreciate it. I will keep you posted. J, Bay Area, CA Reply
6/30/09 3:19pm

Hi My name is Laurie and I get migraines often not quite as often as your sister but about every 5 or 6 months so bad that I need to go to the er and get 2 or 3 doses of dilaudid injected into my medi port! which is and instans Iv access!!! it is a weonderful thing to have but anyways I think your sisters doctor is overdoing it!!Have her look in the yellow pages for a pain specialists I see one about every 6 months or so!! he gives me maxalt for my migraines the onnly problem with maxalt is you can only take 2 a week!!!And it sounds like your sister needs more than that but my pain specialist Is a great man and he really cares!!!Hi name is Richard caner and he is out if Libertyville Il

Well I hope this helped you out a little!!

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8/29/09 12:50pm

I am (was) a nurse & am a chronically pain-stricken individual seeking help on your great website. And, I feel I need to intervene, here. Correct me if I am wrong but by unequivocally answering "no" you may panic people off their meds...people who won't read all the way to page 3, like I did. The Transformed Migraine article warns them against just that! The TM article says it is important to not panic & suffer your pain without taking your opioids but rather to try to decrease your need for opioids, under doctor supervision. The article does not elaborate what to do if you cannot get relief without opioids...or what if those "chemical changes" are permanent. 

 

And, so what if there are people who will need to be managed for life on opoids who just have headaches. Not that too many folks on here who would say "so what", however since the "so what" factor would only come from someone who has never experienced a headache that was severe &/or often enough to ruin their life. I just wish opioids were considered with the same respect as other lifesaving meds people become dependent upon. People with real, chronic pain only have about a 1% chance of addiction. Doctors & nurses need to need to start educating themselves (& patients) as to the difference, while dispelling myths & fears. There must be more concern over pain as actually being a 5th vital sign with pain relief as really being part of the patients Bill of Rights, within a rational framework And, with legal protections/tort reform so they can stop being forced to practice defensive medicine & not just stuff steroids or other meds that are way worse than opioids down peoples throats. Better that than the continued agony I hear (& experience, firsthand) unrelieved over & over again by people seeking help on forums & websites (oh, & in MD offices!) with answers that sound good until you try them, if you can even afford them.

 

I am a disabled nurse who has tried just about everything for a 3 year headache. (I also have several  autoimmune conditions). I have also tried stopping everything except Phenergan & just suffering on my couch for weeks after reading your info on rebound awhile back...but I think rebound can take months to resolve, if that is all I even have...which already I know I do not. It is only  a complication I must manage. I will NEVER try withdrawl on my own, again but do plan to try in an inpatient setting, with ...if I can even afford it. I am not even on much medication since I am so very sensitive & can only take low dose Lortab without getting worse. And, so I am in even worse shape due to rebound from recent surgery due to taking extra Lortab & NSAIDS which has forced me back onto 125 total Dopamax, which isn't even helping much. You are trying to help but be careful trying to cut off a whole treatment option that is the only reason I am still alive right now. I'll take low dose opioids over a bullet, thank you very much.

 

Oh, the only time in 3 years I have been headache-pain-free was after waking with a full blown ocular migraine after a total hysterectomy 7/30/09  for stage 4 endometriosis with bowel involvement that even required gallbladder removal. The anesthesiologist gave me Dilaudid...so despite major surgery pain I felt better than I had in 3 years for a whole 24 hours & that is how I stumbled upon this post....searching Dilaudid & migraine.

 

Thank you. 

Lynne Lee C.

 

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By help4mysister— Last Modified: 12/04/10, First Published: 06/14/09