For those who read my recent update regarding my hospital visit you know of my struggles with trying to find a doctor in NY to take charge of my care, all the while having a NS in Ohio who claims my shunt works just fine although I still have daily pains and troubles. As I still suffer from headaches, fatigue, joint and muscle aches, I take Dilaudid to help with the pain. Without the medication I wouldn't be able to do ANYTHING. With the medication I can help my children with school, run errands, or to sum it all up...function. Sure....at one time I was only taking the medication on an as needed basis. But, last August, prior to my surgery, my Neuro doc had taken me off all meds (Diamox, Topamax and Lasix), giving me Dilaudid to use for pain. At that time I was in severe pain daily and was in the ER at least once a week for an LP. Eventually, the pain became unbearable and I had no choice but to get the shunt out of pure desperation. As my NS told me, a shunt doesn't always cure the headaches and in my case it certainly hasn't....although I will say they aren't as bad as they were pre-shunt. After surgery, I was on Dilaudid everyday to deal with post surgical pain and post shunt low pressure headaches. As I can't find a doctor to help me or to do a shunt revision, I am still on this pain killer in order to survive. My PCP knows of the pains I suffer and continues to prescribe the med, only asking that I use my best judgement to try and wean off of it when I can. Now where does this leave me?

Dilaudid is an opiate and one of the strongest pain killers available. As such, it doesn't take long before our bodies become addicted to the drug. Normally that process takes place within a couple of weeks or so. I've been on the drug for over a year now. I've no doubt that if I stopped taking the drug tomorrow - cold turkey - that I would become very, very sick. I am medically addicted to this drug. So...should I enter a rehab clinic. Try to get clean? The answer?....No! The reason?.....Because unless my doctors can give me a working shunt wherein I'm not in pain...I need the Dilaudid.

So, why do I bring this up? Because, last week at the hospital this topic became a big issue. As I've been on Dilaudid for over a year I have a very high tolerance for the drug. As such, when my pain becomes uncontrollable and I go to the hospital the small doses of Dilaudid they use to control pain doesn't work. I need a much higher dose. But, doctors are so concerned these days about "drug seekers" and people coming to the hospital just to get high that they forgo properly treating the chronically ill patients. Last week, not only were they not controlling my pain, but, I wasn't getting any sleep - which just made my headaches worse. Every day I was there I would ask to be released. As I had stopped vomiting, I knew that I was better off at home. And yet, everyday I was told I couldn't leave. Now, I ask you....Would a drug addict want to stay in the hospital where they would get IV drugs or would they ask to go home? And is it not true that if they had just given me one solid dose of pain meds the first time around.....one big dose that would just get rid of my pain and let me sleep....that I could've gone home sooner and gotten rid of the headache? Once upon a time, they did just that. Years ago, if I had an uncontrollable migraine, I would go to the ER. They would give me a shot of Demerol and Phenergan. I would go home. Sleep for 12 to 18 hours and when I woke up....no headache. Now, they don't give Demerol shots anymore because they say it causes seizures. Now, they are so paranoid about everyone being a drug seeker that they don't treat you. So, instead you stay in the hospital for a week, always in pain, never getting better....until they finally release you. And, they did release me. But guess what? On my discharge paperwork my reason for hospitalization wasn't listed as "Headache due to IIH", but rather, "Headache caused secondarily to opiate addiction"! The nurse was angry. I was crying. My husband was livid. We currently have the President of the hospital looking into my story as we have requested that this be struck from my record. Needless to say, I didn't sign off on the paperwork. If it is not struck from my record, I plan on hiring an attorney and filing suit against the hospital.

Now as we've discussed in previous posts, it is true that pain meds can cause rebound headaches. I've had rebound headaches before. In fact, Morphine almost always causes me to have one. But, I can safely say that in the case of Dilaudid....I've never had a rebound headache. Moreover, I have an entire file documenting the pains and troubles I've had with IIH over the last couple of years. Certainly enough of a background to explain my reason for being ill.

So, what's my point? My point is that for those of us who experience chronic pain, there is no way to get "high" off of these drugs. I don't feel euphoric when I take it. Sure, some may become groggy and tired. (I personally don't). But, I don't feel good. It just takes the edge off. I'm not the only patient who deals with this type of discrimination and IIH isn't the only disease that requires daily pain med use. My aunt takes daily pain meds for her severe RA and my mother takes daily pain meds for her battle with MS and degenerative disk disease. Does this make us a family of drug addicts? No....it merely, lets us live somewhat of a life in a body that has robbed us of doing it comfortably.

How many of you have suffered this same kind of neglect, abuse, and maltreatment from your doctors? I think this is a very important topic, and would like to speak to the IHR Foundation about starting an advocacy division who will properly explain our disease to the multitude of ignorant doctors out there and help to stop the foul treatment we are receiving. I envision this group as travelling around to different hospitals to educate hospital staff about IIH, and to advocate for IIH patients when issues like those above occur. What is your opinion? Please respond and give your two cents on the subject.

MM3