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Cluster headache and GCA involving arteries
Lou Navahra posted a topic in General BoardHi everyone, My name is Lou and I come from Belgium. An amazing person named Tony told me about this forum and also told me that I might be able to find help here. I will try to be as clear as possible to explain my problem because English is not my mother tongue, excuse me in advance. Dr. Bayard Horton has discovered two diseases that are both called "Horton's Disease". One of them is the Horton's Syndrome (Cluster Headache) and the other one is the Horton's Disease (GCA involving arteries). Apparently, the second is rare and less common than the first one. After serious exams, my mom was diagnosed with Horton's disease (GCA involving arteries) and the pseudo-arthritis (in general, pseudo-arthritis comes with GCA unfortunately). She suffers from arms, hips and migraines every day. She has difficulty eating because her jaw is painful. Despite taking cortisone to prevent inflammation, my mother still has severe pains and therefore difficulty walking. My first question is: Do you know her disease? If so, I would like to contact you to discuss and know the painkillers that exist... please. My second question is this: As my mother suffers from atrocious migraines, I want to know the treatments that exist against violent headaches. Having one of Horton's diseases, the treatments that you offer may be effective for her as well... My mom is like my best friend and seeing her suffer makes me suffer. I am very worried about her health, she does not live well, sometimes she says to me "How can I continue to live like this?” And it scares me. I do not know what to do to help her... Thank you in advance for reading my message and for your help. Lou
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
Capsaicin Method - Preventative
ClusterBusted posted a topic in General BoardHi all, episodic cluster sufferer here. I have had cluster headaches on the left-side of my head for about 9 years now. I have tried everything from triptan medication to prescription medical oxygen. The only thing that has really worked to abort the attacks is the oxygen, and that is only convenient when it is available and works completely. Recently, I have been doing a bit of research and experimentation regarding the trigeminal nerve and intranasal application of capsaicin (hot pepper extract). I have had great success with this, and my cluster headaches have been less frequent, as well as the pain of attacks has been reduced greatly. For a high level overview of why/how this works, please reference this video. Also, here and here are published studies. Method: The method that I use to accomplish this is relatively simple - Instead of using pure capsaicin extract, I use really hot peppers and a Q-tip. Lately, I have been using bird's eye chilies, but really any hot pepper hotter than a jalapeno should work. I take a sharp knife and slice the pepper down the middle. From there, I spread it open and roll the Q-tip around inside of the pepper, while pinching the pepper around the Q-tip to get the most liquid that I can. After that (make sure there is no debris on the Q-tip, first), I place the Q-tip directly inside of my nostril on the side that I experience headaches on (for me, it is my left side) and rub it around directly on the mucous membrane inside my nostril. Immediately, you can feel the burn. Here's the thing - the first time I did this, it hurt like holy heck. The second time, it hurt, but not as bad as the first time - this pain continued to subside with daily application, and I currently barely feel anything when it is applied to the inside of my nostril. It is best to place the Q-tip directly inside your nose and apply, then when your nose starts running, inhale through your nose to get it a bit further up there. If you are doing it correctly, your eye will automatically begin to water (just like during a cluster) and you possibly may begin sneezing. I have done this twice a day for the past month, and my headaches have decreased greatly in both pain and frequency. I believe there is something to it, and suggest that others give it a try. I should definitely be amid a cluster period right now, but have been for the most part headache free. I understand that it sounds a bit bizarre, but I was willing to try anything to get my headaches under control. This seems to be working for me, and I couldn't be happier. If you have any questions, feel free to ask. Thanks!
Hi All, In the past few weeks, I've been doing a lot of renovations, and the fall is here, and I've started getting cluster headaches again. But this time I only had one full-on blown headache, and it was a 1 on the 1-10 scale of cluster headaches. I've had shadows 10 or 15 times, but I wouldn't call them full blown headaches. The frequency and intensity of the shadows has been decreasing, and they're almost gone after 2 weeks. So I'd like to share how I've come to basically eliminate cluster headaches from my life. I'm quite confident that knots in the neck are the primary cause of the cluster headache. I use a trigger point cane massager to relieve the knots, and this has prevented cluster headache for a couple years. I also practice an active form of relaxing the muscles in the next and back, and work to preserve go is standing and sitting posture. If you're just starting a cycle, the trigger-point massage can provoke shadow-type cluster headaches, but rarely full-blown. It is not an effective treatment IN THE MIDST of a cluster headache, but it doesn't do any harm and the pain couldn't be much worse, anyway. I discovered this relationship after 20 years of cluster headaches, with a 2 to 3 month cycle coming every 2 or 3 years. Many people experience knots in the neck during a cluster cycle, but I'm quite confident that everyone experiencing cluster headaches has a knot in their neck, and that the know precedes the headaches. Here's a study backing up my claim, but I encourage everyone here to get a trigger point massage stick, practice relaxation and self-care, and find out if I'm right for themselves. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2631448/
Question about shadows?
Brianh posted a topic in General BoardI am curious as anyone experiences shadows on the opposite side of their head from the side they get attacks on? I seem to experience shadows on the left side of my head and behind my eye during my cycle more than on the right side in which my attacks occur. Is this normal or something others experience?
Question about cluster cycles?
Brianh posted a topic in General BoardHi my name is Brian and I am new here and have a quick question! I am 28 I have been having cluster headaches since my early 20s and as you all know the pain is unreal. My question though is about the nature of my cycles as I seem to have 2-4 cycles a year lasting only from a single day or two up to 10 days (longest it’s ever been). Is this abnormal as everything I read about cluster headaches suggests cycles are much longer than just a few days, I have all the normal symptoms of the headaches, the triggers associated with the headaches as well but my cycles don’t seem to fall at the exact same time each year maybe once a season or so. If anyone else could shed some light on whether very short cycles are common? also my average cycle is about 5-7 days
Cycle coming to an end?
nomoreclusters777 posted a topic in General BoardGreetings fellow clusterheads. Very grateful for websites and forums like these. Around the age of 12 I started getting the most brutal headaches I had ever endured. At the time we had no idea what they were. As most of you went through as well, I had all the tests, scans, sinus meds, the works. Eventually, on my own after the age of 18, I figured out what they were, and discovered that there was no cure lol. What a kick in the balls that was. Anyway, I'm now 35, in the middle of a cycle, after going 4 years since my last one. The older I get and the more I progress career-wise, the more pissed off I get at these headaches. I'm trying more things than I ever have before, and more consistently, in an effort to find something that works. In past cycles I would be so damn depressed that I would just wait until the next headache, at which time I would alternate between holding a scalding hot heating pad to my head, and taking hot showers for 3-4 hours until the pain began to subside. This time around, as soon as I got the first one, I went to see my doc, and informed all of my different clients (self-employed) that if I was to get a headache, I will be unable to function and work. For the first time ever I found something that worked as an abortive (so far, knock on wood). Imitrex injections. In the past I had taken tablets, but never the injections. A week and a half ago my doc put me on Prednisone hoping to knock the cycle out. 80mg the first day, then 60 for two days, then 40, 20, and 10. No go. As soon as I got to the last day of 10mg, I got a beast of a headache. As of yesterday, I'm now on Verapamil, started with 80mg yesterday, and 160mg today and for the next few days. Plus taking Magnesium supplements, still small though, only 250mg today. The new meds have fucked with my usual cycle, so I'm curious what everyone's thoughts are... In past cycles, I would get one incredibly bad headache in the morning every couple days. It would last 3-4 hours, then I would be sore the rest of the day, and then nothing the next day. The last few days have been as follows... Saturday early morning was the brutal headache following the Prednisone. I was headache free then until Monday early morning when I got one and used the imitrex injection for the first time. About 8 hours later when I woke up I had a milder version of one that I knocked out with a heating pad in a couple hours. That day (yesterday) I began the Verapamil. Today early morning I got another one, thought it seemed slightly weaker, and used the imitrex again to knock it out. Now this evening, earlier than usual, around 8, I got one that seemed even weaker than the one I got early this morning. It was still bad, like someone burrowing out my brain with a spoon, but not nearly as bad as the really bad ones. I used a heating pad, hot showers, and aspirin with codeine, and knocked it out in a couple hours. Today was the day I took 160mg of Varap. My question is... could the cycle be coming to an end already due to the Varap.? Sorry to sound anxious, these things are just a fucking living hell. I'm a musician, so I've basically had to hire subs to be 'on call' in case I get a headache. I anticipate another one a couple hours after falling asleep tonight, and then I will see how tomorrow plays out. I will be on 160mg of Varap. for the next few days. Would you advise me to jump up the dosage? Or see if this one works? And again to my question, can the weakening of headaches be a signal of the end of a cycle? In past cycles I do recall that was how it occurred, but it has varied every time, and I think honestly I try to block out the memories of these fucking things. Thanx for listening to my story! And my heart goes out to all of you sufferers.
Pokes head in and says...
MoxieGirl posted a topic in General BoardHey. I haven't posted much recently, but am still around. Guess my beast has gone on a bit of a holiday, and isn't troubling me much. Or it's been scared away by the nearly daily headaches and migraines. Actually, they are worse than that, getting 2-3 a day many days. Sometimes my head seems determined to not let me have a break. But hanging in there. Cannabis in the evenings is helping me sleep, which reduces the migraines so that most mornings, I only wake up with a headache and not a thumping migraine. I've even had entire days that were pain free, or nearly so. Am trying to count my blessings. Hang in there my friends. xx MG