Chronic migraine/cluster-new member

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Peace&Love
New Member


Date Joined Jan 2013
Total Posts : 2
   Posted 1/7/2013 1:03 PM (GMT -6)   
Hello all,
As a 12 yr sufferer of inititially episodic, now chronic migraine/cluster headaches...I'M EXHAUSTED!! And I know there are many people with greater burdens to bear. I started out the first 11 years with numerous neurologists, psychiatrists, you name it. I ran the gamut of 'non-narcotic' pharmacology and alternative disciplines. Sure, every now and then one of my headache episodes would run me into the ground and into the ER...where I'd finally get some relief from the pain and vomiting, I'd sleep, and wake up feeling like a new me. I finally told my GP I'd had enough, the financial & social casualties of the headaches and subsequent ER visits was too much, so about a year ago he prescribed 4 mg. dilaudid and 25 mg. phenergan prn, which worked great! My quality of life was back & I was making good progress in every aspect of my life! In short, I was FINALLY excited about waking up again each day instead of always on-edge, just wondering if the headache was going to pick today again to turn my life upside down. I hate to be so long- winded and maybe this is the wrong forum to post this on, like I said, I'm new. Just trying to introduce myself. Anyway, after 10 mths or so of relief, I was referred to a pain specialist, who switched me from the 2-3 4 mg. dilaudid prn/day to 2-3 7.5mg. norco prn/day. In a matter of a week I was left virtually debilitated, which I told him so he promptly switched me to 2-3 7.5mg. Percocet prn/day. I can't say I've noticed much of an improvement with that. In the 11 days since we switched I've been to the ER FOUR TIMES!!! I'm exhausted, frustrated, scared, and all EVERY positive aspect of my life has totally stalled. Any advice would be welcome, I see him again tomorrow and although it's just a day away it seems impossibly far. Thanks for your patience. In addition to the headache disorder, I have hypoglycemia, Reynaud's Syndrome, LRD, and co-occurring anxiety that always comes with the headache cycle(I'm sure most of you can relate to the incredible stress the pain tends to bring with it). confused

ToryAldridge
New Member


Date Joined Dec 2012
Total Posts : 2
   Posted 1/9/2013 1:06 AM (GMT -6)   
Welcome to the forum! Congrats on reaching out to some of us that share similar experiences. It has been my experience, that networking is the best thing to do because experience is worth it's weight in gold! (or pain-free days!)
Since you have been diagnosed with true migraines, it is important to identify your triggers first and foremost. I know that sounds cliche but it really does help. There are many websites and apps out there that are very valuable. Next, ditch the narcotics! I know that they are needed sometimes as abortive migraine therapy. However, I know that there is a bunch of research out there, and from my own migraine treatments, that narcotics can cause a rebound headache and then it is a slippery slope from there. I went to many neurologists and "specialists" and that was always their plan-b. I quit going to doctors for years until I found one that stated that he had never prescribed a narcotic for migraines! WHAT??!! I could not believe it! So, I went to him and my life has changed forever because of his treatment plan. I would recommend finding a new specialist that would be willing to try some different things with prophylactic treatments and non-narcotic therapy.
I am en-saddened by the droves of people that have addictions, side-effects and bad reactions from being on narcotics for so long for this horrible, horrendous, pain that us migraine folks have to deal with!
Hydration also helps me and avoiding trigger foods like cheese, MSG, lots of sugars and having a regular sleep pattern.
I hope some of this helps you, hang in there and keep working!
Tory
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