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Title: MERRY MEET Post by wraith636 on May 30th, 2005, 10:20am Hi all It's been a few years since I been to this site but as luck will have it my beast is back and once again we shall dance. My name is Jim I go by Wraith636 I have had Chronic Clusters since I was a child only in the last 10 years have I had any pain free periods. one lasting 1 and a half years and this last one which has lasted almost 3 years I have been dancing 5 to 10 times a day for goin on 2 months now every once and awhile the beast will tire and i will catch a day of sweet sleep but he always comes back. But I am sure you all know this already. Forgive me if I tend to ramble Heck I may be in the wrong forum, the Drugs are taking their toll. Last time I kicked the beast with Prednisone but that was a no go this time. tried Topamax but had a reaction to it at work sorta like a mini nervous breakdown Cried for 4 hours straight for no apparent reason freaked my companys medical dept out so bad they placed me on medical leave it was at this point I remembered this place and here I sit typing away. I hope to get to know some of you better so I will continue to post but for now I have to go get another tank of OXY and they can be a real booger to find on a holiday. So Goodbye for now and may you be lucky enough that your beast finds another partner to dance with this day..................... |
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Title: Re: MERRY MEET Post by Jonny on May 30th, 2005, 11:06am Welcome aboard Jim......read all you can, sorry you had to find us but glad you did....and you will be also ;) |
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Title: Re: MERRY MEET Post by Kim Y. on May 30th, 2005, 11:14am Welcome Jim, Sorry the beast is being sucha butt head to you lately. Glad you are back. Support lies here. How are you using your O2? Have you tried Verapamil or even check out the Kudzu thread. Please don't do anything without medical advice. The Kudzu is natural but does effect your BP. It goes along the same lines as Verap. Melatonin is good for sleep at night. 6-9 mg does the trick for most. I am still trying to figure out the beast for myself but have attempted these. But like we have all said we are all different so what doesn't or does work for one does or doesn't for another. PF wishes and hope this helped some.......Kim |
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Title: Re: MERRY MEET Post by wraith636 on May 31st, 2005, 2:03pm Good to meet you Jonny and Kim Found the Oxy about 4 hours after the search started good thing for emergency delivery Only had to use half a shot of Imitrex so consider the day a success had a total of 5 headaches Oxy aborted 3 GO OXY...... As to your Question Kim I have H tanks at the house and a couple smaller tanks for travel I cannot stand the non rebreather mask, I spent so many years without the oxygen I rub my face alot and the mask gets in the way I use a nasal canula put it in my mouth cinching it at the back of my then turn my O2 up to 15 LPM and breath normaly through my mouth I am carefull to keep my mouth open so I am not breathing just pure O2. as for treatments I have been to the Diamond Clinic And spent Close to 6 months at the mayo clinic I have been through most of the drugs listed and unfortunately most do me no good Only the harder more damaging drugs seem to work I coordinate Very Carefully with my Doctor but sometimes mistakes like the topamax happen. I am Used to this I find myself worrying more for my family than myself I am lucky enuff to have a family that has supported me through everything the beast has thrown at me From Addiction to Being arrested for a headache I had on the roadside. Cop thought I was strung out on drugs after I locked the doors to the car and refused to talk to him the beast was being very onery that day and i just didnt feel like spending 10 minutes explaining something at that time I did not understand myself. The scuffle that ensued after I exited the car was not very amusing at the time but S**t happens (I have a very strange sense of humor) Anyway I just remind myself that i have had a few good years and will have many more. Currently I am taking 200 mg of doxepin a day 30 mg of restoril a night. I have plenty of Imetrex And Stadol this allows me to maintain a pleasant outlook on life and maintain a semblance of sanity in public. I will look into the Kudzu but researching the latest greatest drugs yesterday I came across a product called Sinus Buster Ordered a bottle should be here in a couple a days will post any results I have with it after a weeks trial of it I have an appointment next thursday with my Neuro need to find an alternative to the Stadol I have reached my self appointed limit of it so I need to find an alternative. it is causing rebounds so time to move on any Advice to an alternative would be appreciated prefferably something NON ADDICTIVE I know thats a tall order But I also have a very strange sense of Optimism I am going to ask go to the ergotomines I have had some luck with them before but with the amount of headaches I am getting unless I break the cycle soon I am gonna have a short lived run with them also. well enuff for now thanks for all the replies an private messages please feel free to contact me privately Or through the forums and may your beast find something else to do this day, so you can enjoy yours ;) |
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Title: Re: MERRY MEET Post by seasonalboomer on May 31st, 2005, 2:16pm There's been a fair bit of conversation on Sinusbuster here. Check out this thread: http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=chspecific;action=display;num=1113713851;start= Pay close attention to the feedback form those that actually gave it a go. Sounds kind of harrowing. Kind of the equivalent of cutting banana peppers on a board and then forgetting and itching your eye, except up your nose. Take some time and look at the Kudzu thread(s). While there have been a copule of bad experiences, there have also been some very good ones, vouched for by some "CH regulars" here on the boards. Nani is a chronic who has had some success with Kudzu. Check with her. PF days ahead hopefully. Scott |
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Title: Re: MERRY MEET Post by jokrs2 on May 31st, 2005, 6:22pm Right on Scott. Nani helped guide me towards Kudzu which helped me considerably, and then I moved on to Hawaiian Baby Woodrose seeds because I have been chronic for 2 decades. Now over 7 weeks without a hit or a shadow. Just saying that these both helped me. Best wishes to you in your fight. Joe |
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