colemonster Posted October 12, 2010 Share Posted October 12, 2010 Hi, first I wanted to introduce myself. I began getting CH at 14 years old and would get one everyday at school right after lunch, within an hour it was over, never told anyone just delt with it. I then had them every 2 years or so after that. I tend to get hit late summer and the cycle lasts until Dec. I did not have them while I was pregnant with both of my children but had terrible cycles right after delivery. I am very active. Exercise always brings on a monster when in cycle. I trained for a marathon in 2001 during a cycle and it was incredibly difficult. I also can not drink any alcohol while in cycle, instant headache. My pain is always around my left eye, lasts about an hour if not treated with Imitrex. Sorry to be so long winded, trying to give you the short version! Anyways I went to a neurologist 4 years ago and was officially diagnosed. I was lucky not to go back in cycle since then, thought I had beat it! Of course, that is not ever the case. The beast came back mid Sept and has been a very bad cycle. I have been treating myself the last few weeks as I work in healthcare and hate the Dr. business. I put myself on welding O2, have had great success! I also started the Verapamil the neuro gave me 4 years ago. Took it for 1 week, made me feel terrible, low BP as my BP is low anyway, very low pulse. Stopped the Verapamil and busted with the strong stuff this weekend (if you catch my drift). Anyways heres my question....I have felt so clear since busting. Amazing clear! A few shadows here and there but nothing much. I even exercised yesterday and had no h/a which never happens unless I am out of cycle. Do you think it is possible that I have killed the cycle with just one dose? Should I dose again a week from now just to make sure and get rid of the shadows? I am really amazed at how easy this seems to have been. Could it be possible that I have aborted a whole cycle? One dose of Imitrex makes me feel way worse than this did! Thanks for your help in advance! Quote Link to comment Share on other sites More sharing options...
alleyoop Posted October 12, 2010 Share Posted October 12, 2010 First of all, welcome colemonster! Sorry you had to find us, but glad you did. Do you think it is possible that I have killed the cycle with just one dose?Should I dose again a week from now just to make sure and get rid of the shadows? I hope you killed your cycle with just one dose, but I doubt it. The fact that you are shadowing suggests otherwise. When did you bust? You need to wait 5 days before busting again. This gives the receptors in your brain time to reopen. But that doesn't mean you have to dose in 5 days. I would wait until your activity picks up again. Did you have any hits post dose? Most do. I hope that you did indeed bust the cycle! Keep us posted. Quote Link to comment Share on other sites More sharing options...
This isnt fair Posted October 12, 2010 Share Posted October 12, 2010 I have been trying to bust my cycle, first attempt 2 weeks ago, got hit very next night. suffered through a week and tried again, got hit same night, I had even upped the dose from 1.5 to2.5. been getting hit hard every night this week except 2 days ago, had 1 night, no attack and not even a shadow. then right back to the same routine every night attack and last night it came earlier and lasted longer. put a small top under tongue after 4.5 hrs of torture. a hour and a half later it subsided. should I wait again because of the cap or can I retry tonight? Quote Link to comment Share on other sites More sharing options...
This isnt fair Posted October 12, 2010 Share Posted October 12, 2010 sorry colemonster, hello. I didn't mean to thread jack. I hope you find the help you need here. There is a great support group of people here, I too am a newbie and have been welcomed no questions , no judgments, just good advice and understanding I wish you the best of luck. Adam Quote Link to comment Share on other sites More sharing options...
colemonster Posted October 13, 2010 Author Share Posted October 13, 2010 alleyoop- I busted this past saturday. I was planning on busting again this friday this time with rc seeds. I have not had any hits post busting just a few slight shadows. I feel almost normal. Do you think this weekend is too soon? I have became so excited about ending it early that I guess I am just wanting to bang it outta here fast! Quote Link to comment Share on other sites More sharing options...
alleyoop Posted October 13, 2010 Share Posted October 13, 2010 No, I don't think that this weekend is to soon, especially if you are like most and have to pick your times to bust. I love your excitement too! I just don't want you to be too disappointed if one or two busts doesn't end your cycle. Quote Link to comment Share on other sites More sharing options...
kaboom Posted October 13, 2010 Share Posted October 13, 2010 Welcome! I'm no pro, but I'll share my experience thus far. I've been trying to bust since July. Sometimes I get one or two days PF then the shadows settle in. They always graduate to full blown hits by mid week. I've been chronic for several years so it's my understanding that it may take longer for me to make the kill. I hope your CH's battle is short - that would be so amazing! Please keep us posted on your progress. I did not have them while I was pregnant with both of my children but had terrible cycles right after delivery. The same thing happened to me. I didn't have any clusters at all while pregnant. I did have an epidural with both my girls. Clusters hit hard and heavy about three days after they were born. That was a new mom gift I would have rather not received! I didn't mean to thread jack. There's no need to apologize. Every one of us here, sufferers and supporters alike, have had days when we are exhausted and feel beyond desperate. As far as your redose - I'm sure one of the more experienced members will answer soon. I believe your going to have to wait a few days. I'm going through the same hell - I just can't shake these things. It's pure torture, but at least I don't feel like a prescription toxic dump. It seems to be a bad time of year for many of us. Quote Link to comment Share on other sites More sharing options...
alleyoop Posted October 13, 2010 Share Posted October 13, 2010 should I wait again because of the cap or can I retry tonight? JMO, but I'd say go ahead and dose tonight. If you don't get good efficacy, then it's probably because the receptors weren't open. Good luck! Quote Link to comment Share on other sites More sharing options...
colemonster Posted October 13, 2010 Author Share Posted October 13, 2010 I think I am going to bust again Friday. I have felt amazingly great since busting last saturday. A few shadows here and there but nothing of any significance. I have had a dull headache and stiff neck (I hardly every get a normal headache). Hoping that is the beast drifting away from me! Also, I am such a virgin to this type of thing, never experimented with anything other than alcohol in my younger days. Have to say the busting was a very nice experience. Much nicer than the Verapamil, and I felt like I was doing less damage to my body with the busting. Sorry, just rambling on. As many has stated on these boards, non clusterheads don't really understand any of this. Feels good to get some things out. Nobody really understands what a relief and the excitement we get when we have a few days with no pain or fear of pain. Taking off to the trails to mtn bike! Wish me luck!!! This will be the second exercise test this week, hope it goes as well as the first test on Monday. This is always a telltale sign of in cycle or out of cycle! I always get a monster of a CH after exercise!!! Quote Link to comment Share on other sites More sharing options...
Hipshot Posted October 14, 2010 Share Posted October 14, 2010 Welcome to the board of the EX-Damned Colemonster. What kind of name is Colemonster anyway. haha I got relief after just a few doses and eventually long lasting relief after being chronic for years. It is just as exciting as hell. I am now of the opinion (knowing that I will have to (get to?) do this for the rest of my life, that stretching time out between doses is the ticket. Rather than continuing to try to slam the doors closed; once closed it seems to make sense to massage them closed in order to keep them closed...the receptors, that is. The lightest effective dose and the longest stretch of time between doses. IDK, maybe just me. But so far, so good I told my Mom on the phone tonight that it is actually more amazing than having kids. I am of the male persuasion, but it's still one of the most amazing things that has ever happened to me. Like Kaboom said on one of the threads...I sometimes have a shiteating (not her exact words, mind you) grin on my face and probably look like a RETARD to the casual observer. They'll just have to wonder. Life is a bowl of cherries for now anyway. I try to cherish each day and hope things continue as they are. I also hope that everyone else can find the same thing happens to them soon. Every day is a holiday! Dan Quote Link to comment Share on other sites More sharing options...
Hipshot Posted October 14, 2010 Share Posted October 14, 2010 Also, I am such a virgin NO PROBLEMO! LMAO You must get used to some of us. Quote Link to comment Share on other sites More sharing options...
Bonkers Posted October 14, 2010 Share Posted October 14, 2010 You guys are so cool. All this success makes me happy as hell. Congratulations! Quote Link to comment Share on other sites More sharing options...
kaboom Posted October 14, 2010 Share Posted October 14, 2010 Like Kaboom said on one of the threads...I sometimes have a shiteating (not her exact words, mind you) grin on my face and probably look like a RETARD to the casual observer. ;D Not exactly my words, but close enough! Keep grinning - let's keep them guessing! Happy trailing, colemonster! Quote Link to comment Share on other sites More sharing options...
Hipshot Posted October 14, 2010 Share Posted October 14, 2010 Hey Kaboom! So you were a ball player when you were young? Too funny. I know I'm combining threads, but it just came to mind. Dan Quote Link to comment Share on other sites More sharing options...
kaboom Posted October 14, 2010 Share Posted October 14, 2010 As a teenager, I played a lot just for fun. My "baseball in the eye" incident put an end to the guys in town allowing me to practice with their team. This stupid eye has been nothing but trouble from the very beginning! As far as exercise affecting my CH's, there is absolutely no pattern for me. In my pre-02 days, I used to go for a run or use a punching bag when the headaches hit hard. I'm not sure if it helped abort them or if it just helped me to cope. Since I've become chronic, my CH's have no preference as to whether I'm sleeping or working out - they'll come on during either. Quote Link to comment Share on other sites More sharing options...
colemonster Posted October 14, 2010 Author Share Posted October 14, 2010 Thank you all for all the positive and funny remarks. Hipshot- colemonster is a nickname we gave my oldest son. A name I use from time to time. Kaboom- You are right, I walk around with this sick grin on my face and want to shout to the world how I took care of my own problem with the help of other sufferers. Of course, I can't do that as I would put myself and family at risk of all kinds of backlash! It is still amazing to me how things can be looked at as such a terrible, life wrecking subtrance can bring such peace to many of us! Just shows that all things that seem bad and taboo are not always the case and good can come from things when treating it with respect. Anyway, just an update, not a shadow in 2 days. Rode my bike for an hour last night, had the strongest legs ever (think I finally got that nasty Verapamil out of my system!) Happy as can be right now!!! Quote Link to comment Share on other sites More sharing options...
Hipshot Posted October 14, 2010 Share Posted October 14, 2010 I had more than just my legs back after getting off that nasty Verapimil. Thank goodness. You guys prob know what I mean Glad you're doing well Colemonster. Keep It Up! Quote Link to comment Share on other sites More sharing options...
This isnt fair Posted October 14, 2010 Share Posted October 14, 2010 GONGRATS!!!!!!! Quote Link to comment Share on other sites More sharing options...
colemonster Posted October 14, 2010 Author Share Posted October 14, 2010 This isn't fair- Thank you! Are you getting anymore relief? I am by no means an expert on this at all as this is my first time trying it as well, but how many times do others recommend trying one method before moving on to seeds or something else? I did start out with the heavy duty stuff, not by choice, just that the opportunity arised and I was anxious to get the monster out of my head! I can see where it is very frustrating to be wanting the busting to work and still having hours of pain after. I consider myself very lucky with my results and wonder if maybe I am not the norm. The only thing I can figure is that I have had CH's for 20 years and did not know until about 4 years ago what they were when I finally went to the neuro. I never got near as many as some do on these boards with an average of 1 a day for 3 months out of the year and then a 2 two year break. I never took any meds for them for years except the typical nsaids which did not work anyway. I did not get Imitrex until my cycle before this one and have used it very sparingly. I guess what I am thinking is that maybe the fact that I have not thrown much at my beast through the years maybe that is why I have been successful with busting (so it seems, don't want to jinx myself). I wish you luck with the busting. This pain we get in our head is tremendous! It is something that is not easy to understand to non clusterheads. Hoping painfree days are in your near future!!! Quote Link to comment Share on other sites More sharing options...
alleyoop Posted October 15, 2010 Share Posted October 15, 2010 I guess what I am thinking is that maybe the fact that I have not thrown much at my beast through the years maybe that is why I have been successful with busting I think that you most likely hit the nail on the head colemonster. Quote Link to comment Share on other sites More sharing options...
colemonster Posted October 15, 2010 Author Share Posted October 15, 2010 alleyoop - I guess my next question to you would be how quickly with the beast get resistant to busting? Or, could it possible be a new type of attack that actually resets your head instead of just killing symptoms? Kind of like the new treatments for cancer ...new treatments go to cut off the blood supply to the cancer and the tumor die from no nourishment instead of the old standby chemotherapy that kills the tumor, sometimes makes it stronger and more resistant next time around. Then it reoccurs and is even harder to beat. Sorry for the chemo lesson...just a thought... Quote Link to comment Share on other sites More sharing options...
alleyoop Posted October 15, 2010 Share Posted October 15, 2010 I think that's the sixty-four thousand dollar question. Really no one knows what causes CH or exactly what happens to stop it when we bust. No one knows definitively whether onset is genetic or if it is brought on by some sort of head trauma. Or, could it possible be a new type of attack that actually resets your head instead of just killing symptoms? JMO, but I really think you are headed in the right direction. How many have reported having a runny or stuffy nose and a swollen and teary eye -- without any pain? Maybe it's just our 'perception of pain' that is changed. I really don't have a clue, but it all sounds plausible. And then there's the testosterone - or lack of it - connection. Some have reported having good results using testosterone gel. I, personally, have had good results for over two years with clomiphene citrate, which also boosts T-levels. I attached a paper written by Dr. Rozen in Headache about clomiphene and CCH in the Clusterbusters File section under "stories and articles." Bob Quote Link to comment Share on other sites More sharing options...
tingeling Posted October 15, 2010 Share Posted October 15, 2010 Hi A late welcome and congratulations with you succsess!! Very happy reading I was wondering, i did allot of longd istance training. triathlon training. You can do long distance training now, it doesn`t affect your HA If it doesn`t, it sounds fantastic Quote Link to comment Share on other sites More sharing options...
colemonster Posted October 15, 2010 Author Share Posted October 15, 2010 tingeling- When I am out of cycle I can exercise at a moderate to stenuous level for 3-4 hours if I want without feeling one twinge of pain. If I am in cycle 40 minutes and I am in a full blown attack, it is always a guaranteed trigger for me in cycle no matter what I do. I biked again last night and did well, still taking 2 plain aspirin right before I go just in case (thinks its more a mental thing than anything, I get so paranoid about getting one). Alleypoop- Your right, there are so many levels to this disorder. I definetely think hormones play a part also as I have always followed hormonal patterns and cycles such as puberty, childbirth, scared to death what might happen to me during menopause, then again maybe that will be the kicker to get rid of him! Strange booger he is, maybe he uses different ways into your body to get the best of you, stress, hormones, exertion, a beer.... Quote Link to comment Share on other sites More sharing options...
tingeling Posted October 15, 2010 Share Posted October 15, 2010 How nice for you I`m grateful i can excercise first place now. But it was very challenging to accept to run what was warm up before. You feel as if decay is thrown at you Your lucky, enjoy your biking Quote Link to comment Share on other sites More sharing options...
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