Josiewales Posted May 21, 2017 Share Posted May 21, 2017 I'll start by saying my name is Josh (28 year old male) and I am in suspicion that I have eposodic CH. I am not on any kind of meds and have not been diagnosed by a GP but from the symptoms, I believe it's Cluster Headaches. It all started last year around the same time as this year. I would wake around 2am with a spliting headache that seemed was coming from my sinus, or behind my eye, the back side of my teeth. At that point I would take an antihistamine with the hopes it would go away. Usually after 60-90 minutes the pain would subside and I would be able to go to sleep again. This occured on and off for the months of May/June around the same time every night. During that time I didn't think much about it. I had some dental work done prior to that and was chalking it up to possible cavities/allergies. Then comes last Wednesday (occurring in may around 2:00am) Boom it hits me. I'll say I have a high pain tolerance, I like with a broken bone in my wrist, I have horrible joints but yet i still get around daily without much medication sans a 800mg Ibuprofen. These headaches like I have read, really make you question whether you want to be here anymore. I mainly can feel it come on slowly through my back/top/left molars and 10 mins later I'm rocking back and forth, left eye streaming and nostril closed up. Nothing ever seems to help. One headache came again tonight. After I had a beer or two after spending the night with my parents. It slowly came on and then there I was again rocking back and forth on my bed after retreating to my room in the darkness. I guess I just wanted to share my story, I know some people have it worse than me but the pattern of headaches is what lead me here and what made me think it wasn't just sinus problems. I didn't know if maybe I should expect things to get worse or if they will kind of stay episodic like thay have been the past year or two. Safe to say the pain has receded for the most part. thanks for any help -josh Quote Link to comment Share on other sites More sharing options...
spiny Posted May 21, 2017 Share Posted May 21, 2017 Welcome Josh! Glad that you found us. There are a lot of things that you can do for CH. The first is to get a definite diagnosis from a Neurologist or Headache Specialist. They will likely order a scan - CT, MRI, or such. This is to rule out any other issues that could be causing your pain. Many of us have started out thinking that it was a sinus infection or dental problem. Some have had teeth pulled or sinus surgery before getting a proper diagnosis. Your PCP may or may not be familiar with CH. Most are not and you will need a referral. It sounds like CH. The main thing that you want is O2 with a non-rebreather mask and a flow of at least 15lpm. Preferably at 25lpm! You will find that it is your best friend when in cycle as it is the best abortive. The most commonly prescribed and effective medications are verapamil and Prednisone. The Pred is used short term until the Verap begins to work. Chers usually require high doses of Verap to get relief. Generally the short acting version is better than the Extended Release one. Likely you will start in the 240mg to 360mg per day range and work up from there. Imitrex is an abortive. It is available in pills, nasal spray, and injection. The pills are pretty useless for CH as they take too long to work. Injections work the fastest but you should not take more than 2 in a 24 hour period. Sprays are in the middle. In the meantime there are a few things that you can do for yourself. For many, an Energy Shot or any caffeine will hep a lot if downed at the first sign of a hit. Check the list of triggers that can be found in the Clusterbuster Files section. Alcohol is one of the main triggers and should be avoided. Sleeping can bring on a hit, but sleeping in a recliner with your head elevated above your heart can help with nocturnal hits. Many apply hot or cold to the painful area, whichever works for you. You can deep breath - emptying your lungs completely on exhale and inhaling deeply. This helps remove the Nitrogen from your lungs and get in more O2. Some put their feet into water as hot as they can stand it. Others swear by vigorous exercise. Keep a regular sleep schedule! Naps can often be a trigger. Read thru some of the Clusterbuster Files. They will give you a lot of info. The closed boards (Share your Busting Stories and Theory and Implementation) discuss alternative treatments. Ask questions! Others will chime in with suggestions for relief. Everyone here knows your pain. Know that you are not alone! We are here to help. ATB spiny 1 Quote Link to comment Share on other sites More sharing options...
CHfather Posted May 21, 2017 Share Posted May 21, 2017 Great advice from spiny (as usual). I would only add that the vitamin D3 regimen discussed in the ClusterBuster Files section is something you almost certainly should start, and also, because CH attacks (definitely sounds like you have CH) often correspond to or are worsened by seasonal allergies, you could try benadryl at morning and night. You could also try melatonin at night, starting at about 9 mg and working up as needed (but not both melatonin and benadryl at night). Since you mention recent dental work -- the anesthetic most often used by dentists, epinephrene, is a severe CH trigger for many people. Talk to your dentist about alternatives. I think prilocaine is considered to be safe for people with CH. (I think I have that right -- epinephrene bad, prilocaine okay. Like I say, talk to your dentist, who should know or be able to find out.) At the top of the posts at this General Board is a list of doctors recommended by people with CH. See if there's someone near you. If you can, get to a headache center, where there is a greater likelihood that you'll get a doctor who knows something about CH. Stay in touch!! Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted May 21, 2017 Share Posted May 21, 2017 Hi Josh, What the ultra knowledgeable lay experts just said. I'd like to emphasize the fact that CH can often be treated effectively. You've happened upon the right place for info about that, and for a lot us there's no reason to have to be experiencing unrelenting, full force attack after attack. "Busting", an alternative treatment discussed in the closed boards Spiny mentioned, can be an an impressively effective preventive...... Quote Link to comment Share on other sites More sharing options...
Josiewales Posted May 23, 2017 Author Share Posted May 23, 2017 Thank y'all for the amazing input. It seems for the most part, they only come 1-4 times every spring right now. As long as I stay Away from alcohol these months. I think for sure alcohol is my trigger and see that correlation every time one happens. they don't seem to bother me as much outside may-July. Hopefully it stays that way and I can maintain it through those months. I will do some reading to inform myself and will eventually get diagnosed. Unfortunately health insurance is a racket and I don't have any... thanks I appreciate the support Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted May 23, 2017 Share Posted May 23, 2017 Sorry you had to learn the hard way, as so many of us have, that alcohol is trigger, and potentially a nuclear level one at that! Quote Link to comment Share on other sites More sharing options...
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