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ThatHurtsMyHead

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Everything posted by ThatHurtsMyHead

  1. ThatHurtsMyHead

    FDA approval...new migraine preventive drug...

    tuesnxt, Thanks for the info! The best we can do is share what works and doesn't, to help the next person. I'm guessing you already have O2? Cheers, J
  2. ThatHurtsMyHead

    Vitamins

    SE, I suspect Batch will be along shortly. The vitamin D regimen is definitely his specialty. Cheers, J
  3. ThatHurtsMyHead

    Aching eyelid and above eye after CH

    Popoid, If you're going the Imitrex (trex) route you definitely need the auto injectors. Imitrex is mostly worthless in pill form as it takes too long to work. Your doc should be able to prescribe the auto injectors. They work in seconds to minutes. Now on to the other side of the coin. I stopped taking all that dr scripted garbage years ago because it either stopped working, or did more damage to my body that I was willing to accept. Stick around and read others stories on the board. There's quite a few ways to diminish or really stop our CH. Have you tried energy drinks yet? Drinking a redbull, monster etc right at the onset of an attack can significantly reduce the attack pain. Most any energy drink with Caffeine and Taurine (and possibly Guarana) in it works. Also High flow Oxygen can stop an attack. The quicker you can get on it at 15+ liters per minute, the faster it'll stop the attack. It's best to get on it as you feel the attack coming, not waiting till the pain kicks in. Once the pain kicks in, it often doesn't work, or takes a long time to stop the attack. Cheers, J
  4. ThatHurtsMyHead

    Im Back

    Jimmys, I second Freud's post on O2! Also you can order other busting materials over the internet that's safe and legal (in most locations). I'm sure Batch will be long shortly, but lots of people have good success with the vitamin D regimen. PFW, J
  5. ThatHurtsMyHead

    FDA approval...new migraine preventive drug...

    tuesnxt, It baffles me almost daily how some doctors are allowed to practice medicine. Him saying CH and a Migraine are the same is like saying heartburn and a heart attack are the same.. geesh.... Sorry you have to deal with such incompetence. J
  6. ThatHurtsMyHead

    very very light cluster headaches? does anyone get these?

    Jimmy, Glad to hear of your sobriety. I definitely support your decision! On the melatonin: Sometimes it helps with night attacks, but does nothing to stop a cycle, or help with day attacks. I don't recommend it (because it caused me some bad heart issues several years ago,.. ) But.. Lots of people take verapamil that helps them through some cycles. Starting early in your cycle might be good to get it built up in your system. J
  7. ThatHurtsMyHead

    very very light cluster headaches? does anyone get these?

    Jimmy, What you're describing is very common. There's nothing in the official Dr literature, but those of us with CH know them very well. We call them Shadows. They come in many different forms and variations. They can be a weird, or bad feeling with nothing else associated. They can be mild headaches in the area of our CH, but not the same pain. Some people get sore and stiff necks or shoulders. Sometimes we just feel Off, with no real description. For the most part these are all called shadows, and most of us get one type or another before our CH starts. I don't mean to be the bearer of bad news, so sorry, but it's good you might be able to arm yourself early. Those of us that bust often take a preventative dose when the shadows start. During shadows I use the chant, Ong Namo Guru Dev Namo sometimes. PFW, J
  8. ThatHurtsMyHead

    Busting

    Statistic, Busting is what we call it when we use alternative treatments to stop our CH. J
  9. ThatHurtsMyHead

    CURED!

    Bjinno, Thanks for sharing. Glad to hear you didn't get a cycle this year. Sadly though many people have tried going Vegan and it hasn't helped. Maybe it did for you and that's definitely great. CH changes all the time for everyone and regularly skips years for those that are episodic. I'm going to move this thread to the general board since it better fits there. Hoping you stay pain free! J
  10. ThatHurtsMyHead

    After Cluster Headache - Help Please!

    A-Z, Most of us get what's called shadows before our CH starts. A shadow can be lots of different things. We feel bad, but don't know why. We have a weird feeling in our head around where our CH hits, but it's not painful, just a weird or bad feeling. Others have light pain in the area of our CH. Others get jaw or neck pain just before or at the start of our CH coming back. What you describe sounds like a type of shadow. I'm sure others will chime in here with more info shortly. PFW (pain free wishes), J
  11. ThatHurtsMyHead

    What would you do

    BostonHeadacheDoc Rocks!!! J
  12. ThatHurtsMyHead

    Question from someone new

    JohnStopPain, If you can get a script for O2, you might be able to negotiate a cash price for O2 with a local supplier. A few years back I had to buy my own E tanks. Cash price was only $8.10 for each tank fill. PFW, J
  13. ThatHurtsMyHead

    FDA approval...new migraine preventive drug...

    It's always good to bring new information though Otherwise we'd all be sticking ourselves with imitrex till our hearts exploded by now. J
  14. ThatHurtsMyHead

    FDA approval...new migraine preventive drug...

    I just did a quick read up on ajovy. Not impressed. For migraine studies, the placebo had a 75% reduction of headache days as compared to this drug. Basically for migraine it was only 25% better than a placebo. Zero information for CH. Given it has such a poor impact on migraine, I wouldn't expect it to have any positive effect on CH. Just my opinion. J
  15. ThatHurtsMyHead

    What would you do

    Have you tried energy drinks yet? Most people find they work great to soften attacks. I usually slam half a can of monster or redbull at the first sign of an attack. It seems the oxygen works a lot better if I do that just before getting on the O2. Also, I've never had a hard time falling back asleep at night either (only half an energy drink though). When the post hit exhaustion kicks in I'm right asleep after the attack. PFW, J
  16. ThatHurtsMyHead

    When's my next cycle?

    dmlonghorn, Data shows there are less people with CH the closer to the equator we live. As far as episodic cycles. I think that's a complete mystery. I was episodic a long time ago and cycles would start at most anytime. Sometimes they'd skip a year, sometimes I'd have 2 in a year. I think its most common for episodics to only get one cycle a year though. PFW, J
  17. ThatHurtsMyHead

    New with questions, and possibly misdiagnosed

    Ok, the condition I was trying to think of just popped in.. ha ha.. Chronic paroxysmal hemicrania - It's almost exactly like CH, but affects women more than men (supposedly anyway). It also has attack duration from a few to 30 minutes. One BIG difference between CH and CPH, is it us usually treatable with indomethacin. Indomethacin doesn't work on CH, so it's a good test doctors use to distinguish which condition a patient has. Cheers, J
  18. ThatHurtsMyHead

    New with questions, and possibly misdiagnosed

    Nicole, I'm certainly no doctor so take any info I might give as just a vague opinion. The location and description of your attacks sound very much like CH accept for one aspect. CH attacks normally last from 1 to 3 hours. I think you posted yours last from a few to 20 minutes. There are several other head conditions that are very similar to CH and in the same family (trigeminal autonomic cephalalgia), but have shorter duration of attack pain. SUNCT is the first one that comes to mind that has shorter duration. They are normally 1 to 6 minutes and have similar treatment as CH. There are a few others, that actually have better treatment options than CH (though sorry, my memory is bad sometimes and I don't recall the names off the top of my head). Try researching trigeminal autonomic cephalalgia, as that's the primary title for most flavors of CH type attacks. PFW, J
  19. ThatHurtsMyHead

    New to Cluster Buster's

    Tracy, ++ spiny's post. Our alternative meds are actually much safer than society has told us. To make it easy it's best to have a good Set and Setting. Have a friend, someone you feel comfortable with hang out with you. It'll help make the experience much more relaxing. Please post questions in the "Theory and Implementation" folder. There's lots of very knowledgeable people around that can help answer most any question you might have. Cheers, J
  20. ThatHurtsMyHead

    What would you do

    Yann, Sorry to hear of your rough time. Have you tried magic mushrooms, LSA or LSD? There are thousands (or likely more by now) that have found better relief from indole ring hallucinogens than anything the doctor can prescribe. I agree with your thinking about not taking medicines that can cause more damage than help. At low doses hallucinogens are very safe and very effective at turning our CH off. J
  21. ThatHurtsMyHead

    Newbie

    Postdrome - I had to look that up. When my attacks stop (always after 100 percent O2), I'm wiped out. Completely exhausted, but no headache, or pain of any kind. I sometimes have a slight head buzz (from the O2). Even after slamming an energy drink, I usually pass out (or fall asleep) within 3 minutes of my attack completely stopping. J
  22. ThatHurtsMyHead

    Does verapamil work as a preventative for you?

    The first year I took it, it seemed to work (or my cycle was stopping anyway, I'll never know). The next year, it didn't work and gave me PVC's (Premature Ventricle Contractions - Very scary heart palpitations), that took close to 2 years to completely go away after stopping the verapamil. Never touch that stuff again. After the heart palpitations went away, I went from episodic to chronic. J
  23. ThatHurtsMyHead

    Newbie - Clusters and lower / irregular heartbeat?

    3800sc, Yep, those are medical "E" tanks. Looks like three of them have the seals and should be full if they are. You could use the 3, but sadly you'd need a prescription to get them filled. Also it's very likely those are owned by a medical supply company. Most E tanks are only loaned out for use and could possibly be confiscated if you tried to get them filled by a medical supply company. (not positive, but I'd say pretty likely). (I had a med company tell me they'd confiscate two I had from another company if I tried to get them filled). I just did some quick research on an oxygen supplier (airgas). Looks like there's some pretty good O2 prices. $37 to fill a 200 cubic foot tank (which is really BIG). They don't show the cylinder purchase price on their website, but the last time I bought one about that size it was about $175. Cheers, J Ah, I see you just posted a response to CHF. I'll go ahead and post my response, but it's a bit out of date now. J
  24. ThatHurtsMyHead

    Message Board Issue and Upgrade

    All, Just wanting to keep everyone in the loop that we have two things with the message board going on. 1) Currently new registrations aren't working. Anyone that's attempted to register (for access to the busting content) isn't able, due to a security flaw in the system. 2) To address the registration issue, we're scheduling an upgrade to the latest message board software version. We anticipate the upgrade to be sometime between 25 and 29 June. I'll post a specific date and time once it's been set. Please feel free to post any questions or concerns. Cheers, J
  25. ThatHurtsMyHead

    Message Board Issue and Upgrade

    All, The message board upgrade is complete. Please, Please, Please post any issues you encounter here. Thank you! J
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