Whaleyville Posted April 12, 2016 Share Posted April 12, 2016 Hello, my name is anthony. i was looking at the website and thought i would send you guys a message. I am 30 years old and about 3 weeks ago was awaken by the worst pain in my life. I know you guys dont want to diagnose and stuff and i understand that. I just have a question regarding cluster headachs. I seem to match most of the symptoms of clusters with the exeption of being pain free in between attacks. When my head isnt throbing i always have this lingering pain on the same side and after the worst attacks the next day my head feels sore to the touch and im exhuasted as hell. To make my question simple, is it typical to have a lingering headach inbetween the extreme episodes. Like i said i know you guys dont diagnose and stuff but im just searching for answers and have been in and out of the doctors for the last few weeks. They have tried all sorts of meds and now im going to see a neurologist. I was just hoping yall could point me in the right direction considering you guys have first hand experience. To be honest after looking at the website and stories i am terrified. Thanks Quote Link to comment Share on other sites More sharing options...
CHfather Posted April 13, 2016 Share Posted April 13, 2016 Anthony, I would say (others might correct me) that it is not uncommon to have that lingering headache and the other symptoms you mention. The lingering headache is sometimes called a "shadow." Some people find that ginger tea can reduce the shadows. Also, an energy beverage might help (see below). Terror is not a completely inappropriate response -- but many people have made CH a whole lot less terrifying and a whole lot more manageable with techniques that are used here. If the neurologist gives you a CH diagnosis, insist on oxygen. You can read about that here: https://clusterbusters.org/oxygen-information/ Even neurologists are very bad at prescribing oxygen, so go prepared to insist. Once you get the prescription, you might want to upgrade your system to be even more effective . . . but for now, one step at a time. You might want to consider starting the vitamin D3 regimen that is described here: https://clusterbusters.org/forums/topic/1308-d3-regimen/ Since it's basically good for you and not very expensive, you don't have much to lose. Pharmaceutically, the standard correct prescription for CH (unless it's contraindicated in some way) is verapamil as a preventive, and oxygen and imitrex as abortives. Injectable imitrex works best, but the nasal spray can also help. Imitrex pills are pretty much worthless. Sometimes a steroid (prednisone) taper is used to try to stop the cycle. Many folks here use other, non-pharmaceutical, methods. You can read about the "busting" approach in the numbered files in the ClusterBuster Files area. Two other things you might try: Drink down an energy shot (such as 5-Hour Energy) or another "energy" beverage at the first sign of an attack, and take melatonin at night (start at 6-9 mg and working up to find a dose that works for you). Quote Link to comment Share on other sites More sharing options...
Whaleyville Posted April 13, 2016 Author Share Posted April 13, 2016 Hey, thanks for your reply, The doctor had have me a shot of imitrex and it had no effect and i just finished a regiment of prednisone to no avail. They just gave me the script today for the verapamil today so hopfully that can help out. The shot he gave me wasnt during a extreme headach but just one of the all day headachs. I drink coffee and energy drinks pretty regularly and lots of water inbetween. I am just trying to figure out what exactly is wrong with me. I have never had headach problems before and this is new and to the extreme to me. Its been about 3 weeeks now and i know alot of you have been dealing with it for years but its already taking a toll on my work and family. Just sucks hurting 100 percent of the time. i really do appreciate your response and all the advise to try. Its definitely good to be able to reach out to others dealing with the same issues. Thanks again Quote Link to comment Share on other sites More sharing options...
Whaleyville Posted April 13, 2016 Author Share Posted April 13, 2016 Hey, thanks for your reply, The doctor had have me a shot of imitrex and it had no effect and i just finished a regiment of prednisone to no avail. They just gave me the script today for the verapamil today so hopfully that can help out. The shot he gave me wasnt during a extreme headach but just one of the all day headachs. I drink coffee and energy drinks pretty regularly and lots of water inbetween. I am just trying to figure out what exactly is wrong with me. I have never had headach problems before and this is new and to the extreme to me. Its been about 3 weeeks now and i know alot of you have been dealing with it for years but its already taking a toll on my work and family. Just sucks hurting 100 percent of the time. i really do appreciate your response and all the advise to try. Its definitely good to be able to reach out to others dealing with the same issues. Thanks again Quote Link to comment Share on other sites More sharing options...
CHfather Posted April 13, 2016 Share Posted April 13, 2016 Hmmm. I guess you might look into hemicrania continua, which is not treated by the drugs that didn't work for you but by a very strong anti-inflammatory, indomethacin. Here's some information about HC: https://www.migrainetrust.org/about-migraine/types-of-migraine/other-headache-disorders/hemicrania-continua/ Quote Link to comment Share on other sites More sharing options...
Atlas Posted April 19, 2016 Share Posted April 19, 2016 Hi Anthony. I just saw your message. What you describe seems similar to my symptoms. I get “classic†cluster headaches, which are exactly what others on this board describe. Fortunately I don’t get them nearly as often as many others do. But I also get this constant headache behind my left eye (the same eye as my clusters). It can last for hours, days, or even multiple weeks. It’s constant. The pain level isn’t nearly as bad as a cluster, but the word “shadow†does exactly describe it. It’s seems worse than what others describe a shadows. And it just goes on and on and on…. It seems like it will never end. Here’s what works for me. First, as someone else already mentioned, I take a drug call indomethacin to abort the constant headaches. That will either stop it cold or diminish the severity. It also lets me sleep better, so often I can wake up headache free. Second, I’ve been taking a supplement called Phenibut on a daily basis. This has dramatically reduced all my headaches. Finally I also use energy drinks, but you’ve already tried that. In the past I took 240mg of Verapamil. I’m not sure if that helped or not. The indomethacin/Phenibut combination has worked so well I had my doctor take me off the Verapamil. Oxygen helps the full blown clusters, but it doesn’t do anything for the constant headaches. I’ve also taken Imitrex. That really works on my migraines, but it never did much for the pain behind the eye. Hope that helps in some way! Quote Link to comment Share on other sites More sharing options...
ChrisSelf Posted April 20, 2016 Share Posted April 20, 2016 In my early years of cluster headaches I'd have a "ghost" of a headache for almost the entirety of the cluster period. The ghost would intensify into headaches and then back down again. Almost like my left eye was bruised from being hit with something. Quote Link to comment Share on other sites More sharing options...
Delightfu11debs Posted April 20, 2016 Share Posted April 20, 2016 Hello, my name is anthony. i was looking at the website and thought i would send you guys a message. I am 30 years old and about 3 weeks ago was awaken by the worst pain in my life. I know you guys dont want to diagnose and stuff and i understand that. I just have a question regarding cluster headachs. I seem to match most of the symptoms of clusters with the exeption of being pain free in between attacks. When my head isnt throbing i always have this lingering pain on the same side and after the worst attacks the next day my head feels sore to the touch and im exhuasted as hell. To make my question simple, is it typical to have a lingering headach inbetween the extreme episodes. Like i said i know you guys dont diagnose and stuff but im just searching for answers and have been in and out of the doctors for the last few weeks. They have tried all sorts of meds and now im going to see a neurologist. I was just hoping yall could point me in the right direction considering you guys have first hand experience. To be honest after looking at the website and stories i am terrified. Thanks Quote Link to comment Share on other sites More sharing options...
Delightfu11debs Posted April 20, 2016 Share Posted April 20, 2016 What meds have u tried so far ? And my heart goes out to u and every other sufferer they are the worse pain iv experienced in my life but no one fully understands the extent of it Quote Link to comment Share on other sites More sharing options...
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