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Everything posted by ThatHurtsMyHead

  1. ThatHurtsMyHead

    Successful reduction of headaches with diet update

    JohnCluster, I don't mean to be a downer, but it sounds like your cycle just came back, regardless of diet. I can say diet can make a positive impact to reducing the severity and frequency of attacks. (Staying away from any foods with tyramine in them). If you look at any common trigger list, you'll see the worst triggers are always the highest in tyramine. Tyramine being a trigger for individual attacks, but not a trigger for the core cause of our condition. It's good you had such a long time pain free. Diet can definitely make a positive difference. Our cycles change over time. I've gone 2 years without a single attack, then out of the blue I had 2 cycles in one year. It constantly changes. (as does our brain chemistry). PFW, J
  2. ThatHurtsMyHead

    Pre Episode symptoms: do you have them?

    CatCha, For me, the symptoms you describe pre CH starting are spot on. I snap at people for no reason. I don't feel like myself, but there's no specific reason for it, etc. J
  3. ThatHurtsMyHead

    2019 Patient Conference

    I'm still looking for that Florida conference. ha ha... Might try to make this one. Long drive... Anyone posting room shares yet? J
  4. ThatHurtsMyHead

    CH with debilitating anxiety/PTSD, seeking doctor

    You might want to send a PM to BostonHeadacheDoc. He's a headache specialist that frequents the board and regularly speaks at CH conferences. He's helped many of us with CH. J
  5. ThatHurtsMyHead

    How was your weekend?

    FunTimes, Hmmmm, only steak for your wife. Maybe Lobster. mmmm, now we're talking. Glad to hear you made it through a rough one and out the other side. ; ) J
  6. ThatHurtsMyHead

    Upper Cervical Chiropractor worked for me

    I'm glad you're getting some pain relief. I don't want to be a buzz kill, but Chiropractic adjustments have been debunked over and over and over. It's more likely your cycle has just changed on it's own. It happens quite often. I know we're all looking for a quick cure, but chiropractic adjustments isn't it. Just like I thought Verapamil was a miracle drug the first time I took it. I took it for a few weeks and POW.. My CH stopped. I thought WOW., this stuff is awesome... It's a miracle cure!!! The next year (when I was episodic) I went back to the neurologist and got another script for Verapamil. This time it didn't to anything. Not even the slightest help. Instead I got PVC's (Premature Ventricular Contractions) (Heart palpatitations). They took about 2 years to go away after stopping the Verapamil. Again, glad you're getting some pain free time, but I can guarantee you, the chiropractor didn't have anything to do with it. People have tried it over and over. J
  7. ThatHurtsMyHead

    Please Help

    Oh, and any foods high in Tyramine are trigger foods for most of us with CH. Anything fermented or high in preservatives. Alcohol, Cheese, preserved meats, over ripe fruits or vegetables etc. J
  8. ThatHurtsMyHead

    Please Help

    MaskedMarvel, Also never heard of CH having anything to do with the Liver. I'm thinking someone is toking a little to deep on that one. : ) As moxie mentioned, for busting our CH, it's best to stick to 5 days. For some reason the medicine is less effective with shorter or longer time spaces. PFW, J
  9. ThatHurtsMyHead

    Headaches when everything is good.

    Mit12, Yea, over the years lots of people report more or worse attacks when they're relaxing. Vacation, home from work etc. J
  10. ThatHurtsMyHead

    My Face Hurts

    CHF, Yea, I remember reading an article years ago. The prevalence of CH is greater the closer to the poles you get, and less the closer to the equator. J
  11. ThatHurtsMyHead

    Oxygen supplier

    One VERY important key to using O2 is get on it before the pain kicks in. As soon as you feel the attack coming. Slam the energy drink, and get on the O2. If you can do that before the pain kicks in, I'd bet you the O2 will work better. For me, if I can't get to the O2 till the pain starts, it takes 45 mins to work, if it even works at all. J
  12. ThatHurtsMyHead

    My Face Hurts

    CHF, Interesting read, though it seems the article may be grabbing at straws when it comes to CH. There's only a handful of individual cases and the writer's terminology uses "may be responsive" several times. Just based on this article and others that have tried it, I'd guess the responsiveness is no better than placebo. IMHO. J
  13. ThatHurtsMyHead

    My Face Hurts

    Elrik, I'm unsure if your doc doesn't know what he's doing or he's trying an experiment on you. Indomethacin doesn't work on CH. That's not opinion, just fact. It does work on a similar condition called Hemicrania Continua. Some doctors use a short script to see which condition the patient has. If it works you don't have CH. If it doesn't work, then likely it is CH. https://en.wikipedia.org/wiki/Hemicrania_continua If he says you definitely have CH and prescribed Indomethacin then he's not done his research. J
  14. ThatHurtsMyHead

    My Face Hurts

    The company that just took over for VA outpatient oxygen here is similar. They won't do anything unless it's on a script from the VA. It's cheap and easy to buy your own non rebreather masks off amazon. I think someone posted a link recently that they were about $6 each for a basic mask. Also, make sure you do as Jon above recommended. Tape over or install one way disks (if you can) over the open holes on the mask. J
  15. ThatHurtsMyHead

    Amitriptyline... Anyone heard of it?

    BOF, My oxygen co, prefers E tanks because they're easy to transport, both in the truck and around your house. I keep a rack of 10 in my front hall closet. Then transfer 2 at a time to my "CH Chair". Then I put the empties in a rack on the front porch for the O2 guy to swap out whenever he comes around. You can easily carry an E tank, but the M and M60, not so easily. J
  16. ThatHurtsMyHead

    Amitriptyline... Anyone heard of it?

    Oh, about forgot the VA gave me Amitriptyline some time back as a last resort sorta med. I read the side effects list and decided not to take it. A friend of mine is a nurse and his hospital uses an off brand of the exact same stuff called Elavil. The nurses nicknamed it Evil.... Because most people that take it, become manic when they give it to them... J
  17. ThatHurtsMyHead

    Amitriptyline... Anyone heard of it?

    I need to meet FunTimes one of these days. His process of getting extra O2 tanks is exactly what I've done. Often the drivers have no accountability for what they have on the truck, and don't report what they pickup or drop off other than what's on the drop off sheet. When they come to drop the 2 tanks. Say you really need another to get through to the next drop off. I've had guys pushing me to take 2 or 3 extra tanks before. The company just wants to get paid from the insurance co., and have to spend as little in gas exchanging tanks as possible. If you call every two days for refills, I'd bet they'll start leaving extra tanks. J
  18. ThatHurtsMyHead

    Women with CH

    Cheryl, I'm not opposed to it, but it doesn't seem like something that would help. Everything from treatment, to symptoms etc, etc are exactly the same regardless of gender. It's educating the doctors that's the real issue. J
  19. ThatHurtsMyHead

    Natural treatments for cluster headaches

    I might try to look for that option in the software and see if I can default it to a link. J
  20. ThatHurtsMyHead

    Natural treatments for cluster headaches

    Quite funny.... Here's a repost of the link for a regular browser. https://www.youtube.com/watch?v=FblD-PAEzNI&feature=youtu.be J
  21. ThatHurtsMyHead

    Natural treatments for cluster headaches

    Yep, embedded remote HTML is disabled by default in the message board software. It reduces the likelihood of viruses. When you post HTML there will be a message that pops up below it to embed as a link instead. That should work fine. J
  22. ThatHurtsMyHead

    Pounding Head, Broken Heart

    MG, Sending you some good vibes from across the pond. J
  23. ThatHurtsMyHead

    My Face Hurts

    Elrik138, Does your mast have a bag on it below where the oxygen tube comes in? Please post a picture and we'll make sure you're using the right stuff. Also, on the regulator that's a pretty standard 15 LPM regulator. You can buy a 25 LPM off amazon for pretty cheap. PFW, J
  24. ThatHurtsMyHead

    Oxygen concentrators?

    CHMom, I Second CHFathers post. I believe all home concentrators max out at 8 liters per minute (which is pretty useless for most of us). For most people 15 LPM is the minimum to abort and 25 works best. The only way to get high flow is to use O2 tanks. I find using 25 LPM for the first 10 mins or so till the ramp up in pain sorta levels off. Then I cut it down to 15 LPM till the pain stops. Then I drop it to 10 LPM and breathe normally for 5 to 10 minutes post attack. The extra time at the end of the attack reduces the likelihood that I get another attack back to back. PFW, J
  25. ThatHurtsMyHead

    Newbie with 02, increase in attacks, any advice/help?

    Another warning.. I would strongly recommend NOT using poly tubing with the 50 psi regulator port. It might not explode right away, but I'll BET it will eventually. Polly tubing is not rated for 50 psi. J