Grumpytom23 Posted December 10, 2016 Share Posted December 10, 2016 I'm new to this site, glad I found it to talk to the only people who get it. I've been dealing with CH for 2-3 years, I'm on verapamil and CH was dormant for past year, just came back this week. I had an episode last night that lasted 2 hours, my head is sore today in the areas of the pain. Does anybody else experience that? Quote Link to comment Share on other sites More sharing options...
Echo Posted December 11, 2016 Share Posted December 11, 2016 Hi Grumpytom, Sounds familiar. Sometimes a regular painkiller helps ease that after-hit-pain for me. Have you been on verapamil all this time? You might have built up a tolerance for it if the attacks are pushing through now while the meds kept it at bay before. Upping the dosage a bit or taking a break from the meds might help. 1 Quote Link to comment Share on other sites More sharing options...
xxx Posted December 11, 2016 Share Posted December 11, 2016 Hey Grumpytom, The soreness after a heavy CH hit is called cutaneous allodynia. Pain resulting from an innocuous stimulus to normal skin or scalp. It's usually triggered by touch that's not normally painful. It's a little known but common symptom of CH... Take care and please keep us posted. V/R, Batch 2 Quote Link to comment Share on other sites More sharing options...
mit12 Posted December 11, 2016 Share Posted December 11, 2016 The pain I get after a hit reminds me of the day after a concussion. 1 Quote Link to comment Share on other sites More sharing options...
CHfather Posted December 11, 2016 Share Posted December 11, 2016 Grumpy', just checking: Do you have oxygen? Or any kind of abortive, from energy drinks, which help many people, to injectable (or nasal) sumatriptan? Are you doing the D3 regimen? If you are only using verapamil right now, you're in a good position for busting, if that's something you would want to do. Read about it in the numbered items in the ClusterBuster Files section. Quote Link to comment Share on other sites More sharing options...
registrateyourjourney Posted December 12, 2016 Share Posted December 12, 2016 I Have the same. If that pain is gone I'm always getting back to normal. Keep strong, hope it will not last long. Quote Link to comment Share on other sites More sharing options...
Grumpytom23 Posted December 14, 2016 Author Share Posted December 14, 2016 Thanks all for the replies to answer some of the questions I've only been on verapamil, started at 240 mg then had to go up to 360 and was headache free for over a year until 12/4. I had never known about any abortive until I found this site so I've just been bearing thru the episodes. I'm glad to hear that I'm not crazy about the after pains and what I guess are shadows that I have everyday. I'm going to check with my doc about the d3 regimen and believe that alcohol is a trigger, all my episodes have occurred after drinking, for the last fees days if I don't drink I haven't had a headache. I don't know about busting so I'll check that out too. Thanks again you all, glad to have friends who know what it's like! Quote Link to comment Share on other sites More sharing options...
CHfather Posted December 14, 2016 Share Posted December 14, 2016 Your doctor, unless he or she is very very committed to treating CH, won't know anything about the D3 regimen. And if s/he sees the amounts of D3 involved, s/he will probably say that it's way too much. Testing of vitamin D levels is part of any standard blood test. I'd bet ten to one that yours is low. I'd recommend that you ask your doctor for a blood test, discuss the D3 regimen with him/her if you want, but keep an open mind, read the information, consider what the members here have to say. I didn't give you a link to the D3 regimen the other day because it had mysteriously been moved and I couldn't find it. Here it is: https://clusterbusters.org/forums/topic/1308-d3-regimen/ The thing you want most from your doctor is oxygen. Most non-neurologists don't even know about O2, even though it is the #1 medically recommended treatment for CH -- effective and no side effects! You can find info about oxygen here: https://clusterbusters.org/oxygen-information/ Sadly, I would be willing to bet, maybe not at the 10-to-1 odds I was offering regarding your D level but at least at 5-to-1, that your doc won't prescribe it, and will give you some BS reason why not. (The real reason that most docs don't prescribe it, in my opinion, is that they're afraid: they don't have any patients who need O2 at this level so they have no experience with it, and most don't even know how to write a prescription for O2 for CH.) Maybe your doc will prescribe Imitrex; maybe it will be the injectable kind (not pills, which don't work at all; or nasal spray, which sometimes works). That's an easy prescription to write -- and it does stop your attacks. But it's bad for you, and you can't take too much of it, and it's EXPENSIVE. Yep -- drinking is far and away the #1 trigger. It's great that you can get so much relief "just" by stopping. Please be sure to check back. We're just dealing with the basics right now, but there is more that will be helpful once we see where things settle. Quote Link to comment Share on other sites More sharing options...
Grumpytom23 Posted December 14, 2016 Author Share Posted December 14, 2016 The drinking has never been an issue, I did travel by plane right before the attacks started up again, wonder if that has something to do with it. My doctor has just prescribed me a course of medrol dosepak steroid. Any info on that? Quote Link to comment Share on other sites More sharing options...
CHfather Posted December 14, 2016 Share Posted December 14, 2016 Steroids are generally prescribed as a "bridge" medication to try to control the pain while a preventive, usually verapamil, takes effect. Usually, if the steroids do treat the pain, it returns again after the course is over. I don't know the specifics of the Medrol pack to be able to say whether it is the right prescription or not, and I don't know why you would have that prescription without also an increase in your verapamil dosage, which might need to go much higher while you are in cycle. The pressure change related to flying induces attacks in many people. Whether that will start a cycle or not, I really can't say. But you really, really want to have some abortive, if the steroids don't work or if the attacks return after the steroids. Oxygen, as we have said, is the safest abortive. Injectable Imitrex is also usually very effective, but with more side effects and longer-term consequences. In the short run, try an energy shot such as 5-Hour Energy at the first sign of an attack. It can sometimes abort it, or at least reduce the pain. But please ask firmly for oxygen and/or Imitrex. Quote Link to comment Share on other sites More sharing options...
Grumpytom23 Posted December 15, 2016 Author Share Posted December 15, 2016 Thanks for info, I will. Really appreciate the help and insight! Quote Link to comment Share on other sites More sharing options...
Grumpytom23 Posted December 15, 2016 Author Share Posted December 15, 2016 Thanks for info, I will. Really appreciate the help and insight! Quote Link to comment Share on other sites More sharing options...
Grumpytom23 Posted December 15, 2016 Author Share Posted December 15, 2016 So much for the alcohol theory, just finished an hour and 30 min episode and haven't had a drop of alcohol in 3 days; bad one too. Search continues Quote Link to comment Share on other sites More sharing options...
CHfather Posted December 15, 2016 Share Posted December 15, 2016 You have the info you need to get what will help you. If you can't see a helpful doc right away, try a walk-in clinic. If you have options, call around to walk-in clinics and ask whether they will prescribe Imitrex or oxygen for cluster headaches. If you have some documentation of your CH diagnosis, bring that with you. I suspect most will prescribe the trex, but some might also prescribe oxygen. In the short run, try the energy shots (most people prefer them very cold). Other making-do strategies you can start now that help some people include putting your feet in very hot water, as hot as you can stand, in a bathtub; deeply inhaling air from your freezer or an air conditioner or outside if it's cold where you are; exercising vigorously; and taking melatonin at night, starting at about 9mg and working up as needed. Quote Link to comment Share on other sites More sharing options...
registrateyourjourney Posted December 20, 2016 Share Posted December 20, 2016 Register what you do Grumptom, This will give you more insight in how you are doing, what you have done. Alcahol is a trigger for me as well, but not in times I'm feeling well. Beer is bad, whine less, But I go well drinking a gin&Tonic Quote Link to comment Share on other sites More sharing options...
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