DHE...Trigeminal Neuralgia ..... The video the girl has MS But Not all ppl w/ TN have MS http://www.youtube.com/watch?v=TzgpstBWjQw

I did my instalations of DHE 5 of them over the past few weeks... They are so difficult to tolerate. When they start the infusion my chest tightens and my heart rate picks up to an extreme ex: from 75 before to 145 after... It feels as if little bees are stinging me all inside my esophogaus. After this passes the sudden urge to puke comes over me ... usually followed by vomitting for about 15 min. AFTER that passes I pass out and sleep solid for 8 hrs which NEVER happens for me or at least hasn't in a very long time. I have put my heart into these treatments but I find after I only feel better for a day or so then its back to a banshee eating myface off. Which as un plesant as the DHE IVS are the "headaches" are 100 times worse. I wish there were words to desribe what this pain feels like...but here it goes I am going to try. It starts like a kink in my neck within seconds the kink is followed by a hot flash .... like my skin is on fire type of hot flash... next comes the REAL PAIN... Imagine for one second needles being lined up into three big lines across your face one above your right eye... one below your right eye and down into your nose and another along your lower right jaw into your bottom lip. NOW IMAGINE THESE NEEDLES BEING JAMMED IN & OUT OUT OF YOUR HEAD AT LIGHTNING SPEED. THIS CAN GO ON FOR ABOUT 4hrs to 4 days beore medication breaks it... but I have had this almost everyday for 31 days. Idon't want sympathy I just want an answer... something to help me have my life back. I have tried hundreds of medications & been to world renound hospitals someone somewhere has to have beenthrough something similar right!?! I've taken test 800 question test to make sure I am not crazy... and I passed ... wasnot even depressed because I know there is this amazing life out there I just have to get back to it!

I've be diagnosied with 3 diff. things. 1.) Trigeminal Neuralgia... 2.) Chronic Migraines (or status migraines) 3.) sceleroderma (this was most recent) ... I get test results back soon.... Well I had the Brain surgery for the trigeminal neuralgia once ... loss of hearing in my right ear & my head shaved .... and in the ICU for 4 days.... SOOOO NOT A BIG RUSH to TRY THAT AGAIN... UGHHHHHHHH HOW DID EVERYTHING GET SOOOO MEsSED UP. I HAD 3 months pain free when I moved to AZ then the weather changed.. come on weather get hot & dry again.... MONDAY I GO IN FOR ANOTHER SURGICAL NERVE BLOCK>> PRAY TO WHATEVER OR WHOMEVER YOU PRAY TO... THANKS>>> TO MY TWO FOLLOWERS LOL :)

Days of DHE

I just saw the neurologist and have decided to try an IV treatment of DHE (dihydroergotamine) over the next few days. It will cause me to get sicker first but should hopefully break the headache cycle. I have tried the DHE once in the past and had a lot of vomitting with it, so I am very nervous. Since this headache has not broken in 14 days I am pretty much ready to try anything. I am a lil stirr crazy up in this hospital room but at least my Dr. is open enough with me about what is going to happen with the DHE. It is a drug that is not too commonly used but is proven effective in most "true" migraine sufferers. It attacks the headache at its source by binding the receptors in the brain that release seretonin. The DHE can cause rebound headaches that are often caused by opiate based painmedication such as vicodin. Vicodin will only dull a true migraine not take it away which is why when it wears off the pain is very much still there. I have found vasoconstrictors to be helpful but they just have broken this headache. I also will totally cut out food high in an amino acid called tyramine while I am on the DHE (ex: snow peas, msg, soy sauce(miso) pickles, aged meat or cheese, nuts, alcohol, yeast( specific breads and yogurt). I usually avoid all of these food but will stay stricter with the diet on the DHE.

Someting else that is being talked about for patient like me that does not respond well to oral medications. Is Ketamine infusions... http://www.anesthesia-analgesia.org/cgi/content/full/97/6/1730 If you want to learn more about the ketamine infusions and how they work.

hospital

I recently made the move to AZ in hopes of getting some relief from my headaches. I made the decision This last year I kept a journal everything in my life to attempt to find a pattern of what was triggering these headaches, that feel like a banshee is eating my face off! I logged everything... and I mean EVERYTHING (from when I watched TV to what I ate/drank) Other than finding some food triggers I stumbled upon a pattern with the weather. Every time the barometric pressure would rise or fall more than a few decimals I would get wiped out with one these headaches. So far the move has been more than worth my while, I got myself off of all my migraine medications (which when I made the move was Topomax Indomethicin, and Fiorect, plus a few others) At one point I was on around 8 medications a day just to function, along with staying on a very strict diet. After I made the move to Scottsdale , where there seemed to fewer and less frequent pressure changes along with a overall lower Barometric Pressure I was close to pain free. This was until about 14 days ago, the headaches came back with a vengeance. Now they are accompanied by some flu-like symptoms... fever and chills. I am current at Arizona Regional Hospital for pain control because I was violently vomiting after 10days of straight of pain. Again I have began keeping an online journal of the pain ,and only find patterns in the BP. Every time my pain levels are rising it seems the pressure is also rising or falling... So now I wonder how long before it stables back out ? or will it keep changing like this all winter....?? I hate being in the hospital but for now I am just trying to get a grip on the pain.

Miss Migraine

Welcome to my blog about my life, my migraines... and new information I have found to help myself others who suffer from headaches. I would like to show people that one may be suffering silently but look completely normal. It is easy to pretend that I am a normal 22 yr. old except for that last 10 years I have suffered from almost daily headaches/facial pain. I try to lead as normal life as possible, and maintain some hobbies, although I have given up a lot of things I love dues to the pain that affects my day to day life. I recently moved to AZ for the weather from Kansas City, MO. I am logging daily about the effects of the barometric pressure changes on my migraines in hopes to help other suffers find some relief. I also will soon be writing about a diet I follow that seems to help. I am hoping to also find other migraine sufferers who may have some advice & helpful tips for me :)