Cluster Headaches....

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  • I think these headaches are all a vicious cycle. They stress you out because you don't know when the next one will hit -- you worry you will be driving and have a wreck. Then the worry leads to more stress which triggers more headaches which leads to less sleep which leads to more headaches . . . a never ending merry-go-round! Sometimes you want to give up. I did have a good neurologist at first who was also a cluster sufferer. He could look at me and tell if I was about to have a headache. He also had a "potion" that he prescribed that was only available at the pharmacy at his office. Then one day -- poof, he was gone, so was the potion and my records -- he had been disbarred or what ever they do to doctors. Don't know what it was he was giving me to snort but it worked ! LOL guess that could have been part of the reason he had to quit practicing. I also noticed toward the end that he was having trouble keeping up with what meds he had me on and he also put me on too much lithium -- I was really a zombie. But for a while I was in no pain. Hope he is doing okay with his headaches.
  • Yeah, doctors not only have strict medical guidelines they must follow by the board, but they also have strict state guidelines. If a procedure or treatment isn't approved he can't do it, no matter how successful it is. It has to be researched, which takes 10-15 years, and then approved before he can use it.

    Something those who live in a medical school community can do if they want on the ground floor of techniques they are researching is to volunteer as a participant in these. You won't know if you are getting a placebo or the real deal, but it's worth it if you are getting the real deal and the real deal works!

    Do any of you other cluster headache sufferers notice that stress seems to always trigger them?
  • If it was stress alone that triggered these headaches my husband would totally constantly have them...
    His specialist didn't think these headaches have any trigger and if so he thought it would have to do with some sort of medical in balance in a patients system
  • I too am high stress. I deal with stress almost every day. But some days, they seemed to trigger the headaches. They may not have been the actual trigger as much as they made them worse. It is one of those, which came first, things. lol I do know that an anti-spasmodic helped, or seemed to help. I also have plain stress headaches, like I am having today and the past 2 days. Since I started the nerve blocks, I can't tell if they are stress headaches or break-through headaches. I don't care as long as they are bearable and I can still function.
  • Ow wow
  • Doctor wanted me to try the oxygen, but I had no insurance way back then. Now, I have too many kids and not enough money for me to be going to the Dr about these. lol
    Mine start on the left side, eyes water, nose gets runny, yeah, classic, huh?
    My mother had them as well. She made up her own ice bag, sand wrapped in fabric, and kept it in the freezer. Those bags helped me get through sometimes. It molded to whatever shape I felt I needed to press my face into at the time.





    Quote: 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
  • Gosh,,there is no way what so ever that ice would help my husbands headaches,,and oxygen only takes a slight edge of a headache,,,the only med so far that has worked for him is the Imitrex Nasal or a shot of demerol at the hospital.
    We are now at a month of these headaches today,,I am soo hoping they stop soon,,,
    Yes reading everyone elses experiences with these headaches does help,,Good Luck Everyone
  • Don't know if you can get them where you live but BC powders (a powdered aspirin/caffine substance) helps me. I do two of them as soon as my nose starts to run. The caffine kick is what does the trick. I have been desperate enough to do them without water (yuck) while in church -- but the white powder does get some strange looks! LOL
  • OK ,,we have now had a really horrilbe last week,,some days he had 3-4 headaches and every one of them very bad,,,we ended up at the hospital 4 times cause his Imitrex nasal didn't work,,we were soo desperate,,,finally on tuesday at the hospital the ER doc got a hold of a neurologist,,,and got advice on what other meds we could try,,,Hubby is now taking,,Verapamil,,,it is a calium channel blocker,,,and it seems to be helping,,he only got 2 headaches today and when he took the imitrex the headache was gone in record time,,,so lets hope we are close to the end of this cycle,,,and this ER doctor did another CT scan also,,just to be sure,,so that was great,,
    Oh and the neurologist made an appt to see my man next wednesday and told ER doc to send the results of hubbys CT scan to him,,,Yippeee
  • Cindylee, I have never heard of this drug, but I will definitely ask my doctor about it. I am so glad it has helped your DH. I don't see my specialist until October. Thanks for the heads up.