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  #21 (permalink)  
Old 07-15-2008, 01:45 PM
DeBora4BobbyL's Avatar
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Vickie, so sorry about your cluster headaches. Most of mine didn't have triggers either. Stress and if I was around someone who smoked cigarettes, I might get them. Other than that, there was no pattern. Hopefully, yours will get better.
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  #22 (permalink)  
Old 07-15-2008, 05:41 PM
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Wow, I have finally found another woman with clusters! It is so rare that women get them. Mine are in my right eye and my nose starts to run and I can feel the pressure just before they start. Mine are usually in the morning sometimes as early as 3 or 4 a.m. If I can get to my oxygen before they get a grip, I can stop them. If not, sometimes B.C. powders (I think that is a southern thing because I could not find them on the west coast) seem to help. They have a lot of caffine and these headaches like caffine. I think it helps to compare notes with others that have them -- any scrap of information helps! Thanks to all for sharing.

darlene
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  #23 (permalink)  
Old 07-15-2008, 06:06 PM
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Darlene, I will have to say that I have never tried oxygen. No doctor ever offered it to me, so I don't know if that would work for me. If I ever have them again, it will be something to consider.

If only 10% of cluster headache sufferers are women, it is difficult to get a doctor to treat them. I usually tell people I have migraines because most either don't know what a cluster headache is or they don't believe you have them. I don't care what they call them as long as they go away! LOL

The best thing that happened to me was meeting this one doctor. On numerous ER trips, the ER doctors tried to get me to see this guy. I didn't want to go because before I moved to that then new town, I had seen a pain specialist. The old pain specialist gave me enough Stadol and Codeine to keep me in a drugged stupor all day, every day. I didn't like that. Don't get me wrong. I have no problem taking narcotics when needed. I just wanted a doctor to help figure a way to reduce the intensity or the frequency of my headaches. The pain specialist that I initially saw refused to do any tests or treatments and I had better results with a regular doctor that wasn't a specialist. I finally gave in to seeing this second pain specialist and he is my buddy. He and I have become friends. He told me to get him a curriculum vitae to give to prospective employers for when I graduate. (I wouldn't have been able to go to college without his getting rid of my headaches!) He has told me about courses abroad to take 1 year of Spanish in 4 weeks. He has been so helpful in so many ways for me. I wish everyone could have a doctor like mine.
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  #24 (permalink)  
Old 07-16-2008, 05:29 PM
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My Dr. did not voluntarily let me try oxygen -- I strong armed him by saying I would sit in his office until he let me try it! LOL I had read about it and wanted to see if it worked. He didn't think it would but I have been able to reduce my meds by half since I started it. Since I have the headaches daily, that is a HUGE improvement! my dr. and I have a love/hate relationship at times. He is smart but no bedside manners. I like to keep on top of my own health issues (I have lupus too) and some drs. don't appreciate that. I did go to a neurosurgeon and he was very impressed that I had managed to figure out the oxygen and cut back the meds on my own and do it in the right manner. Little did he realize that between doing insurance defense in a law office and having had crazy health issues for several years, I have learned quite a bit about medicine -- enough so that I have caught some clients in lies (oops!) Glad you are doing better with yours. They are really horrible and you sound quite a bit younger than I am. Hopefully they will either go away for good or someone will finally figure out how to get rid of them! Good luck.
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  #25 (permalink)  
Old 07-16-2008, 05:58 PM
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I don't know how old you are, but I will be 46 next month. I have been very fortunate that my doctor has an excellent bed side manner. Some people don't think so, but they are drug-seeking and he can see right through that. I have a high pain tolerance. I remember my family doctor didn't think my leg was broke, when I broke it in his office while I was there for a check-up! I slid on some sleet and twisted my tibia in two. When he came out, he didn't think it was broke because I didn't look like I was in pain. I casually told him that I broke my leg and needed him to do whatever he needed to do to fix it so that I could get to school to finish an assignment. After that, he said that if I ever said I was in pain, no matter how good I appeared, he would believe me. I use a lot of mental techniques to reduce my pain, so I can take a lot. The cluster headaches have been the only things I just could not handle. I can't work while I am vomiting and in pain in the head.

This doctor has been a miracle for me! I can understand why the oxygen works is because deep breathing exercises are recommended to help pain, which increases oxygen levels.

I hope everyone else finds what works for them.
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  #26 (permalink)  
Old 07-17-2008, 06:43 PM
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Hi -- I actually just turned 53. I laughed at your story about your leg. I am a lot like that. I broke my tailbone when I had my daughter. When they removed it two years later, They were totally amazed that I did not take any pain meds for it -- not even aspirin -- and that was with 60 stitches in my git-along! About 5 years ago I had a gastric bypass because I had gained so much weight because of the steroids and no matter what I tried I could not get rid of it -- no pain meds then either. However, these headaches are definitely not for sissies! If men are usually the ones that have them, I can see why they are called suicide headaches -- men are sissies when it comes to pain. LOL I do hope that they find a cause for them soon especially for chronic sufferers. Take care.

darlene
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  #27 (permalink)  
Old 07-18-2008, 05:44 AM
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Darlene, I agree with you about men. Remember Baby Jessica, who was rescued from the well in Midland, Texas many years ago? The EMT that rescued her eventually shot himself in the head because of these. It was difficult because his wife left him, doctors didn't like giving him narcotics since he had them so long, so he started drinking alcohol. When he just couldn't take it anymore, he killed himself. It was very sad.

I agree that they are unbearable. I have had a broken tailbone too. Another pain that is wicked. I think the bad thing about these headaches is that not only is the pain bad, but they can cause problems with sleep and vision as well as cause vomiting. I need to be able to see and sleep (and not vomit) in order to lead my active life.
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Old 07-18-2008, 07:08 AM
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Oxygen ,,does not stop my hubbys headaches ,,but it does help take the edge off a bit,,
Suicide Headaches,,,yep that is what the specialist called them the first time he saw my hubby,,and said they are all just so hard to figure out,,he told my hubby some cases it seem the cause for one person may be jaw problems,,cause once he had his teeth fixed the headaches seemed to stop,,,in other person ,no such luck,,so he said most of the into or tests out there really don't help much,,,cause he said in the Okanagan area of BC,,he had 9 patients with these headaches,,and it says that these headaches are in men,,4 out of his 9 were women,,Men that smoke,,out of his 9 my hubby is the only one who smokes,,he made many more points ,,so for us it is hard to believe anything out there that is written about these headaches,,,he said from his experience, each one of his 9 patients with cluster headaches he has ended up treating way differently...but he didn't totally disagree with any one thing,,so he did put my hubby through all the tests, and tried every different med on him...
So now we are over 3 wks into my hubbys headaches now,,and we basically have a handle on them..He has been using the imitrex nasal,,,and takes it as quickly as he can if he feels the headache coming on,,it takes about half an hour to work, in that half an hour,,the headache gets really nasty,,but within minutes it is gone,,,
Now because Imitrex is made for people whom just get migraines he has told my hubby to go to hospital with about every third headache for demerol,,to break up the imitrex usage ,,also so that your system doesn't become to used to the imitrex and stop working for the headaches,,
My hubby is now 49 and has been getting these headaches now since the late 80's,,,and as studies go with each batch you get they last longer,,,so the first time he ever got one of these killer headaches,,he only got one,,and it lasted 2 days,,for we didn't know what the hell it was,,,then about 2yrs later,,,it happened again,,he got 3 of them,,one each night,,and he went to the hospital,,doctors just treated them like normal migraines,,then 2yrs again,,,it happened,,this it the time that the specialist were finally call and with that batch he had them for over a week,,and right up until 2002 he got a batch just about every 2 yrs,,,now since 2002,,,I do have written down in my book that he got one cluster headache in Aug, 0f 2004,,,and now we are here,,,this batch started on June 24th,,,,

As for as my hubbys specialist is concern with all his reading and research,,,they have never been able to find a commen thread between enough patients to put a finger on any one cause ,,and with most patients have found the headaches do go away eventually but when or how ,,or why ,,,who knows
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  #29 (permalink)  
Old 07-18-2008, 08:19 AM
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I can't take Imitrex as the side-effects were worse than the actual headache! I used to get a lecture from the ER doctor for waiting until the headache was very far gone and into it several hours before coming in as the pain meds don't work unless you take them early on. Once, after I waited too long, I went in twice to the ER and received 2 doses of heavy narcotics, which did not work. That's when I went to the pain specialist that everyone in town swore by. I had been to one before in Texas, and he did NOT do a thing for me except give me tons of heavy narcotics. I wasn't against the narcotics, but I did expect him to help find causes or something to help reduce the intensity or frequency. I have been VERY happy with the doctor I have now as I haven't had one since August 2002. I have had several break-through headaches, but they were nothing compared to the ones I had before the RFT nerve blocks. I would only wish others would find what works for them and have the success that I've had.
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  #30 (permalink)  
Old 07-18-2008, 09:19 AM
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See,,,just what my hubbys neurologist said,,everyone is soo different,,each person has to use different meds and rarely has he found that any two patients are alike,,
Yep imitrex nasal works fantatically for my husband,kills the headache within a half hour, and when we go to hospital ,,they just give him a shot of demerol and gravol,,which works in about 15mins to half an hour,,
No other meds have ever worked and more often then not made the headache worse,,
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