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ThatHurtsMyHead last won the day on December 13 2019

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About ThatHurtsMyHead

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    Loving Life!!!

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    Tampa, FL

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  1. ThatHurtsMyHead


    sn0wh0p, I would ask that you try to keep posts to the topic of CH or helping those with CH. I appreciate your passion for experiences you've had, but there are plenty of websites for those discussions. Shroomery.org DMTNexus.com etc etc. I really don't want to limit your access, or be forced to edit your posts. Trying to enjoy or at least deal with taking our medicine is important, but it's clear some of your posts aren't related to CH and those posts really need to be put on those other boards. Cheers, J
  2. Klasterman, Sorry, but you've been banned. I don't take something like that lightly. I think maybe 3 in the entire time I've helped with this site. Being just plain hateful to anyone here is not acceptable. Your cure is not a cure. That's simple fact and sorry if I came across strong in my earlier post. I'll leave your content for a few days then delete. Good luck to you. That's not sarcastic, I truly hope you can reflect and grow. Cheers, J
  3. Klasterman, I appreciate that you're pain free, but cure it is not. Every week now it seem someone is coming here claiming a cure. Being in remission is not cured. Sounds like your cycle stopped. Again I'm happy for you, but you're like the hundredth person that have claimed a cure and none have actually been proven a cure. CH is an abnormality in our brains, the hypothalamus. There really is no cure without making a change to the hypothalamus.j You'll find that claiming a cure when you only have 3 days pain free is going to put people off. Oh my gosh. I just read that article and I'm cracking up. (sorry, I'm still glad you're pain free, but it has nothing to do with some pressure point, or a plastic device you press on your torso.). Since both those links are selling a supposed cure... I'll have to remove the links. If you have links to something legitimate that isn't selling a cure, they are welcome. PFW, J
  4. ThatHurtsMyHead


    Agreed with BOF. The correct script for CH is 3X the migraine dose. J
  5. ThatHurtsMyHead

    What if there WAS a CURE?

    DK, I've been keeping up with the thread, wondering if it was going anywhere. As others have pointed out. Someone comes to the board every few weeks announcing a cure. There is no cure. Only remission. I myself have gone 2 years without an attack, then back to episodic then to chronic. Others 10 years or more and it comes back. I manage my beast with the natural medicines primarily discussed on this board. That said. I like to follow Bob's lead and let people speak freely without fear of repercussions. MM was once thought of as being a quack management technique. It is now, thanks to Bob and others like him, in my opinion one of the best treatments out there along with Oxygen. If you feel cured, then I'm happy for you. I'd recommend not claiming a cure though. Those of us that have been around are sorta tired of people claiming a cure, yet they're clearly simply in remission. I thought verapamil was a cure many years ago. The first time my doctor prescribed it for me, my CH disappeared a few weeks later. I was over the top happy that I finally found something that worked. The next year my CH came back and I went to the doc for another script of verapamil. It didn't do anything. Absolutely nothing accept give me tachycardia. (A dangerously slow heart beat). I realized thinking back. The first year was about 2 months into my cycle. At the time my cycles ran 2 to 3 months. I realized then, that my cycle had simply stopped on it's on, and had absolutely nothing to do with the verapamil other than coincidence. I've read about others having similar experiences with Kudsu, chriopractic care, hot baths, hotsauce up the nose, having the facial nerves cut, Adkins diet, vegetarian diet, etc etc. and the list goes on. They were not cures, just chance coincidence, or at best something that provided a small bit of help (which we all need at one point or another). What works for one person, may or may not provide help for another. It's great you're in remission, but people will not take you seriously by claiming a cure. You're in remission, that's great and happy for you. Cheers, J
  6. ThatHurtsMyHead

    Question about fatigue

    BOF, You can always edit your own posts as well. Cheers, J
  7. Hi "ThatHurtsMyHead"
    I'm new here, been a CH sufferer since 1983, only properly diagnosed about 4 years ago. Yes really. 30 years.

    Anyway, the reason I'm writing on your feed - I was reading in another post that you were in the military and were misdiagnosed. As was I. I was a communications specialist in the Army (Microwave communications - often speculated about cause and effect, but that's another story).

    I had my first attack in the military. It was without a doubt the worst attack I've ever had, so much so the barracks CQ had me sent to the base hospital. There, they didn't seem to know what to do, so they gave me an injection of Demerol, and sent me on my way. It worked, but then you could've hacked my arm off with a grapefruit spoon at that point, and I wouldn't have felt it. 

    No doctor ever got past the the basics. Hell, I didn't even start putting the symptoms together for a few years. There wasn't an internet then, so not a lot of information available to the average lay person. 

    My question to you - did you ever get a disability rating from the VA? All these years later, I'm being told by several friends I should go file. But other than the possible existence of admission records from the base hospital, I have no real record of this being a problem while I was in. Due to a death in the family while I was out-processing, my paperwork was rushed, and I kind of got screwed on a lot of stuff. 

    I'd appreciate any help or advice you can offer. 

    P.S. - I'm now maintaining well with Sumatriptan auto injectors. My corporate insurance plan only deems it necessary to give me a dozen every 3 months, so I make sure to get the refills even when I'm off cycle, so I can stock up. I'll be looking into "busting" after doing a LOT more research. 

  8. ThatHurtsMyHead

    I’m new here. So happy to find this place!!

    I think Seth meant to post this here: Crazy thing, this my 3rd cycle. And, also on this one, it will skip a day, skip almost two days and come back. And also the time of episodes have varied. I’m episodic and seems to be every 2 years (2015, 2017, now 2019). These clusters super suck, I tried explain it to co-workers as at times I need run off and deal w/ this crap. But, explaining really don’t bring justice. No obvious open wound or blood shown, people don’t understand to much. But, this my first cycle really using oxygen, finally got this doc to prescribe me. Last cycle, she literally told me during a visit and discussion that, “I just gotta deal with it”! Tell me how yal feel about that. I was hot and damn near cried, like this stupid darn ......... Oh well, thanks be to “God” always.
  9. ThatHurtsMyHead

    Risk / Dangers of Oxygen?

    Exiegous, If you haven't gotten that script for sumatriptan filled yet, don't bother. Oral sumatriptan is pretty useless for our condition. You need the 6mg auto injectors. I was given the oral stuff wayyyyy back, and would just throw it up after 10 minutes of an attack. Also, it takes too long to get in your bloodstream to help us at all. The auto injectors usually work within 3 to 5 minutes. (I don't like the stuff, but it can be a life saver when nothing else is available). Cheers, J
  10. ThatHurtsMyHead

    Risk / Dangers of Oxygen?

    Exigeous, Oh and don't forget to stay on the O2 for 5 mins or so after the attack stops. That normally prevents the attack from coming right back. Cheers, J
  11. ThatHurtsMyHead

    Risk / Dangers of Oxygen?

    Exigeous, Correct, as Spiny mentions. O2 toxicity is only a risk at higher pressure than sea level PPO (partial pressure of oxygen) - SCUBA Diving. The only real risk at sea level or lower pressures is alveoli collapse in your lungs, (Those are the sacks that transfer Oxygen to your bloodstream and extract CO2 from your blood) but that's only a risk if staying on O2 for very long periods of time. This is due to Nitrogen washout. Nitrogen washout in the lungs can be prevented by simply taking a breath of regular air every 20 to 30 minutes when breathing 100% O2. That adds enough Nitrogen back to your lungs for proper function for a very long time. Definitely O2 is the #1 abortive. There's no side effects and it's much safer than ANYTHING the doc can give you. Cheers, J
  12. ThatHurtsMyHead

    Anyone in Florida?

    Just messaged you my fellow Floridian. Cheers, J
  13. ThatHurtsMyHead

    2019 Conference how is/was it?

    Home safe as well. Loved seeing everyone, newcomers and old. :P) Love to all CH'ers! J
  14. ThatHurtsMyHead

    2020 Conference

    I think Florida (Tampa st pete) would be awesome.. :). Afternoon sail for the first 20 or so. cheers, j
  15. ThatHurtsMyHead

    2019 Conference how is/was it?

    Just got to the hotel. Already saw a few familiar faces. Love to all CHers. ;) J