Nicoleabc4

I was wondering if anyone who suffers or knows someone who suffers from cluster (AKA Suicide) headaches has tried or knows anyone who suffers from them that tried Concentrated chlorophyll drops for them. If so did it do any good at all? If anyone has tried or knows someone who tried this treatment I would appreciate your thoughts on concentrated chlorophyll drop treatment.

Oh and I am in the United States.

Thank you for all the input. I did have a scan at the hospital and they said all was clear. I did think it was a pretty slick idea to time in between attacks to dash to the er. At intake, the nurse called me brave. I told I wasn't all that brave. This 48 year old lady's big plan was to pull over to the side of the road and call her mommy if an attack came on while I was driving. The er doctor had me on 80 MG 3x/day of of verapapamil but my general practitioner, much to my dismay, decided he doesn't like calcium channel blockers so he chopped is down to 40 MG 3x/day. Thanks for that. Then he popped me on Trokendi XR 50mg 2x/day. Those are those ones I call my "stupid" pills. I can feel my IQ dropping by the day. They are killing my eyesight,I can't remember anything, tingling hand, dizzy, can't think straight, and I can't eat. Everything I read says you are supposed to build up to that kind of dosage. He slammmed me with the full dose all at once....no building up. Don't get me wrong. I don't want to go back. These things make me feel awful with the side effects but I never want to feel that hideous pain again. I am scared to say anything to the doctor though. I can still feel the attacks at their normal times. I get the eyelid drooping, the sweating, the overheating, the congestion, a bit of the pain. I just don't feel that crippling pain. I think I am going to suck it up how it is for a week until I get to the neurologist and see what he has to offer and weigh my options from there.

Thank you. I had a difficult time getting my doctor and even the the first er doctor to listen to me. At the first emergency room the insisted it was "acute migraine" and kind of lectured me and asked why didn't I just take my migraine meds? I insisted it was not a migraine. I have had very bad migraines to the point where I lose vision temporarily since I was a child. This was not a migraine. It was all on my right side of my head with indescribable pain, my eye watering, my nose felt like it was clogged and like somthing crawled up there and was eating my nasal cavity, my teeeth, my, ear, my jaw, my cheek, everything...excruciating! With a migraine I would have done sensory deprivation and tried to lay down. Tried that...big mistake! Made it MUCH worse. All I could do was pace, hold my head, rock, try to find something that would provide some relief. Nothing. Scared the heck out of my family! They though I was having a stroke because I guess I kept asking if my right side of my face was drooping. By the time the ambulance drivers did all the hooking me up to stuff and pulled out my driveway it resolved (about an hour our so into the ordeal). The whole next week was more of the same at home. The next weekend I timed a trip to another more prominent hospital between attacks since they seem to come at pretty regular times. They instantly diagnosed cluster headaches after hearing everything that has been happening and put me on oxygen at the hospital and referred me to a neurologist. However, I called the neurologist and couldn't get in from an er doctor's referral. It has been quite a frustrating run around. I finally managed to get an appointment. We will see how it goes on May 22nd. I am a pretty wimpy person and not so great at self advocating. Maybe I should find someone to go to the appointment with me. I am in awe of how strong all of you people must be to live this for so long. I am completely miserable right now and have no idea how you do it.

Hi. I know I will not use correct terminology. I am new to this. I had my first episode April 1st and an ambulance was called. I thought my head was going to explode! By the time the ambulance got to the hospital I was feeling pretty silly because I was doing the "pain scales" and was saying right now I am at 0. If you asked me a half hour ago there wasn't a number high enough to give you for the pain scale. Anyway, since that first episode, I get at least 4 per day at pretty regular times. Sometimes I get more. I often get them about an hour after I go to sleep. The pain even wakes me up and works into my dreams. The other night I had a dream that I was hit by a pipe wrench and is is exactly how I felt when I woke up. I am sure I am preaching to the choir here. My question is how on earth do you cope with this? My general practitioner has me on calcium channel blockers and anti convulsive medications to try to prevent them. They are doing a fair job but I still feel them lurking and trying to push through. They do manage to get through but nowhere near the pain level as before. However my cognitive skills, memory, and eyesight or seriously impaired on these meds. I also can't eat on these meds. I will finally get to see the neurologist for the first time on May 22nd. Please, help me with any suggestion on how you all have been coping with this?