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Found 6 results

  1. According to the FDA there is a shortage (unavailability, really) of verapamil ER in the U.S. The manufacturer stopped making it recently, I think in February 2019. It looks like it is not available in any strength. This has been a miracle drug for me for cluster and I've run out and am now having a bad time. I'm going to have to try replacing it with regular verapamil. Does anyone know if there is a way to ask FDA to get verapamil ER made by another company, maybe as an orphan drug?
  2. Cluster Headache  Gone

    My Cluster Headaches are finally gone for good.

    My Name is Michael, I would like to a acknowledge everyone who is suffering with the beast, I pray that my Son or anyone else out there will not go through the HELL I went through. I'll tell you my story, it's going to be about a pity party like no other. However, at the end I did find my cure and I hope you find yours. I was 22 when I was hit with headaches that didn't want to leave. Thank God, I had great insurance. I saw several ENT's - Ear, Nose and Throat Specialists, a Couple of Neurosurgeons, a couple of Chiropractors, an acupuncturist, some gentleman who put a hot iron on my head... believe me when you have this pain, displaced pain helped me to get through it. Long story short, I was finally diagnosed with what is referred to as Cluster Headaches, for which I was told that there was no cure. By this time, I had knocked my self- out, used a towel with a hot iron on my forehead several times, using a towel not to burn the skin to much. These headaches have a Nick name, as you may know, they're called Suicide Headaches. I can believe why, one day I went to the beach just to try to burn out my left eye with the Sun... I told you this was about a pity party. I can go on and on about this pain, but I'm sure you have your own stories. I recently watched Kung Fu Hustle, I strongly recommended it. What I got out of it, is sometimes we're put in an extremely bad situations to learn lifes' lesson, my opinion of course. I danced with the Devil for close to 8 years. My redemption came with a young lady named Ani, she knew of my headaches and had me listen to a meditation tape. OK, please stay with me. When your in God awful pain you'll try anything. I listened to this tape and to put it simply, it opened another door for me. I knew no one on the outside was going to help me, I tried everything I came across, so I figured I'll cure myself. Please keep an open mind, it worked for me, everyone's built different and I'm just sharing my experience. My cure was heaven sent for sure. Although, I cursed a lot, I kept the faith, sometimes it was less then a grain of rice, but it was there. How I cured my self was with mostly God's help. I started meditating every hour I could, and what I mean by meditation may be different from others definition on meditation. For me, I would spend almost every moment of everyday concentrating on my hand and fingers, after a while I could feel the blood flow being pushed into my hands and fingers. I actually got a security job so I definitely had time to do so. After a while, I realized I could control my blood flow to each of my fingers at will, this took some time, but believe me, it was like winning the lottery 1000 fold. I woke up one morning with one of the worst migraines of my long line of episodes. I was done, I told God I was done. Then something phenomenal / remarkable happened. I had my hand near my head and I felt what can only be explained or felt like a small electric current. I thought to myself, could this be it. I pushed and pulled the blood through the left front side of my head where the majority of my pain was centered. Let me explain what I mean by pushing and pulling in detail. Once I had taught myself to control my blood flow, by focusing on one finger at a time. I felt by controlling my breathing ( Breathing in slowly from my diaphragm - pulling slowly) and breathing out slowly while focusing - pushing slowly) I could literally push and pull my blood circulation. I know it sounds crazy, but it worked for me. On my way to work that morning I felt what I can only explain as a vein vibrating or a small popping sensation down the left side of my nose. The Beast had left the building. I am not a doctor, this isn't medical advise by a long shot, just sharing what worked for me. I'm 54 now and still Cluster free. THANK YOU GOD
  3. Headsufferer

    Newbie

    Hi I’m new here and i have never joined or been part of a group or forums. I have the very rare brain disease Moya Moya with TIA’s & strokes as well as chronic migraine, cronic daily headaches and cluster headache, epilepsy, restless leg syndrome and depression. My consultant has exhausted all treatments medical devices and medications and is at a loss. I have been referred to Queens Square London to look at undergoing further brain surgery but this time for the cluster headaches. I am in my 20’s i am exhausted daily - i either sleep and woken up by headaches or I don’t sleep at all one night and have energy the next day (i put it down to adrenaline). I have a 4 year old daughter who is so good with my medical problems - when a cluster attack comes on and i am on the floor screaming begging for help rocking forward and backward she goes in to my bag and takes out my sumatriptan injection cartridge and gives it to me. She has done this since she was 2 1/2. I have been under the same consultant for 14 years and he now holds his hands up and says he is at a loss and doesn’t know what else to do. I have gone through the gammacore device, celefax head thing, he went to the board and got funding for Botox injections of which i had 30 injections at a time and nerve block injections. I am taking 10+ medications daily which depresses me every time i see them in my hand. Has anyone had any luck with any treatments? I’m loosing faith that i will ever get any relief.
  4. registrateyourjourney

    Looking for testers

    Hi, I talked a while ago about the app that we are building right now. This app I build out of personal interest to registrate my own attacks in a good way, and to help other who have these attacks. It will be free to download in the iTunes or Play store. But I need some testers to install the app and try how it goes. It is a very simple app but it would be nice if there are some people that want te check it again so we can start to registrate soon. About the setup of the app: When we have an attack we are unable to startup the computer and edit an excel list, unable to fill-in a report of an app om my mobile. At least, I am un-able to do this. The collected data of almost all apps get stored in a diary. Meaning I have to open and view every day individual to view the data, not handy Our app is made simple. Press the button of headaches and it is registered, press the button if Sumatriptan and it is registered. Press the button of having a massage, taking Vit D or drinking coffee.....and it is registered. Later you can see all your registrations on a timeline instead of an agenda to get a clear view on what you have registered. This will give the option to compare different years, month with each other, compare with other patients and thus giving us the option to help ourselves even better than we do right now. This app is build to help you all and not out of personal gain!
  5. Yesterday afternoon around 3:30 I started to get a cluster headache. I've been running low on Zomig nasal sprays and my insurance is refusing to cover them so I opted for chugging a Red Bull. This has worked from time to time. Anyways, the pain began to increase and after about an hour and a half I threw up several times from the pain. Another half hour went by and the cluster headache subsided and I was able to lie down instead of my usual pacing around the house/rocking back and forth/kicking the mattress. However, The pain behind my eye turned into a different kind of pain, different from the shadows, almost like what I assume to be like a migraine. I could barely stand up without feeling really nauseous and my face was super pale and I couldn't stop shaking. My boyfriend was really concerned and we went to urgent care where they gave me some anti-nausea medication and sent me home. This lasted for 4 hours. I have never had this happen before, where a cluster headache shapeshifts into a migraine like headache. It was awful. Has anyone else ever had this happen?
  6. Yesterday afternoon around 3:30 I started to get a cluster headache. I've been running low on Zomig nasal sprays and my insurance is refusing to cover them so I opted for chugging a Red Bull. This has worked from time to time. Anyways, the pain began to increase and after about an hour and a half I threw up several times from the pain. Another half hour went by and the cluster headache subsided and I was able to lie down instead of my usual pacing around the house/rocking back and forth/kicking the mattress. However, The pain behind my eye turned into a different kind of pain, different from the shadows, almost like what I assume to be like a migraine. I could barely stand up without feeling really nauseous and my face was super pale and I couldn't stop shaking. My boyfriend was really concerned and we went to urgent care where they gave me some anti-nausea medication and sent me home. This lasted for 4 hours. I have never had this happen before, where a cluster headache shapeshifts into a migraine like headache. It was awful. Has anyone else ever had this happen?
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