Jump to content


  • Content count

  • Joined

  • Last visited

  • Days Won


Everything posted by ThatHurtsMyHead

  1. ThatHurtsMyHead

    Why do I have food triggered CH when in cycle?

    Definitely allergy in my situation. J
  2. ThatHurtsMyHead

    Why do I have food triggered CH when in cycle?

    John, Pebbles, You raise an interesting point. I've realized over the last few months, that ALL of my CH triggers I've known about for years. Those have apparently been causing subtle but very present negative impact to my life when I'm not in cycle. I've started realizing most (if not all) of the aches, pains, irritations, stomach issues etc etc etc. Even though they are mild, that I've had off an on my entire life all seem to be related to one food or another. The one (or could be two), commonalities of all my food triggers is they all contain yeast and/or tyramines (alcohol, chocolate, yogurt, fermented cheese, bbq sauce, preserved meats etc etc). I found by chance a few months ago that if I went a few days of not eating anything with yeast or tyramines in it, that ALL of my body symptoms would go away.. (ALL). I've been experimenting with different foods for a few months now, and everything I'm finding comes back to one or both of those things present in foods I eat. An hour to 12 hours later I get pain, irritation or something bad with my body... Quite interesting, and I'd speculate that we all have similar allergies, but are only VERY mild when not in cycle. J
  3. ThatHurtsMyHead

    Dale's Black Eye Palsy, a Cause of Cluster Headaches

    Lifer, Sorry that I don't understand, but that description you posted doesn't have anything to do with Cluster Headaches. (that I can see). J
  4. ThatHurtsMyHead

    Why do I have food triggered CH when in cycle?

    John, Your timing of snacks / meals and CH attacks aren't much different than mine. My triggers are very quick and can be quite severe. Please look at the triggers list (food particularly) under the "Files" section. There's a TON of them, and I'd bet you're hitting a trigger at meals / snacks. As an example, I can eat A chocolate Candy bar and get a BAD attack as early as a few minutes after finishing one. BBQ sauce, and I get hit about half way through my meal. If you can identify your triggers, you should be able to significantly reduce your attacks. I easily cut out 90% of mine, by sticking (it's TOUGH), to a no trigger diet. Hope this helps. J
  5. ThatHurtsMyHead

    Please Read - Forum Upgrade Coming Soon

    ALL, Coming in the next few weeks (Date TBD). The forum software will be upgraded. With the upgrade comes some enhancements, but the most important thing everyone should be aware of before it occurs is your ID WILL be reset. The new version doesn't allow us (for some reason) to carry over the same configuration we have now. If you originally signed up for the board with one ID, but changed it at some point over the years to another ID then the system in the background still has your original ID on your account. With the coming version upgrade it will only allow ONE of the two ID's to be used. We're opting to use the most current ID and eliminate the oldest (original). If you've never changed your ID then this shouldn't impact you. As an example, in my case: I originally signed up with ClusterBusters with the id "ThatHurts", some time later I changed it to "ThatHurtsMyHead". After the upgrade ONLY the most current ID will work and most likely that ID will have to have the password reset. You MUST have access to the original email address to reset your password. After the upgrade I won't be able to sign in with "ThatHurts". Also, you may not be able to reset your password using your ID, you will have to use the email address you signed up with. I apologize in advance for any frustration this may cause, as it's not our intent, but our hands are tied based on the changes the software publisher has made. I have a temporary generic email setup separate from the board (Just in case you can't send messages after the upgrade) BlaaBlaa911@yahoo.com That may change in the coming days, but I wanted to get something out here as a place holder (yes it's a real email for me, but not one I monitor accept for special situations). Please post questions here as needed. Thank you, J
  6. ThatHurtsMyHead

    Please Read - Forum Upgrade Coming Soon

    For any others that have questions, don't hesitate to drop a note here, or PM me. Happy to help. As for the question of Display Name. That's the name for everyone that shows up here on the board. (Mine is - ThatHurtsMyHead). Cheers, J
  7. ThatHurtsMyHead

    Please Read - Forum Upgrade Coming Soon

    Tony, Sending you a PM now. J
  8. ThatHurtsMyHead

    Shoulder pain

    Jenny, I experience arm, hand and finger numbness occasionally. I've always been able to attribute it either sleeping on my arm, stress injury of the nerve, or just plain overuse by a repetitive task (but not necessarily stressing). If you have any concern your numbness could be related to your CH or nerves then I'd highly recommend making sure your doc knows. Have a great day, J
  9. ThatHurtsMyHead

    New to all this

    Jenny, I'm just going to ride the coat tails of the others that posted above. Ditto. This community rocks! I especially like Sous139's comment "Follow the plan and it will get better" CHFather put together a great common trigger list that can be found here: https://clusterbusters.org/forums/topic/4568-triggers/ It might be a bit long, but it's worth it's weight in gold as a 10 minute read. I suspect you'll have some lightbulbs going off as you read through the list. PFW, J
  10. ThatHurtsMyHead

    Was PF for almoust two years now its back!

    Rimantas, I'd suggest sticking to the method most of us have found works and works consistently. 1- 5 days between doses. (if it's taken sooner, there's a high likelihood it won't work). 2- Don't take it with food. (Mixing mm with chocolate has a lot of oil in it and oil / fat reduces the absorption in the intestines) Eat a light fat fee meal about 2 to 3 hours before taking your dose. Drink plenty of water or gatorade (but not too much) during your dose. Some people have a natural tolerance to mm, but hitting a mild trip most of us have found is very important to how well it works on our CH. If you're only feeling mild effects of the mm and it's not working, then wait 5 days and move your dose up. (in my opinion). PFW, J
  11. ThatHurtsMyHead

    The day after MM Maintenance dose

    Mit12, I've had the same before. Mild sensations the next day. Nothing visual or intense, just a shifted feeling. Not sure why, as it's only happened maybe twice. I'd suspect something to do with a particular food eaten around the time of the dose. J
  12. ThatHurtsMyHead

    Was PF for almoust two years now its back!

    Rimantas, I don't see in your post how much mm you've been taking? Are you hitting a trip level 2 or better? My initial suspicion is your dose might be low, or you might be taking something else that's blocking the effects? J
  13. ThatHurtsMyHead

    Please Read - Forum Upgrade Coming Soon

    Just bumping to top again. Cheers! Jeff
  14. ThatHurtsMyHead

    Please Read - Forum Upgrade Coming Soon

    Bump to the top. Wanting to make sure everyone sees it that checks in over the next few weeks. Cheers! J
  15. ThatHurtsMyHead

    Daylight a huge problem

    CHF, Not sure if it's relevant, but is she taking anything for mood enhancement? Most mood stabilizers also cause a sensitivity to sunlight. St Johns Wort as an example. I don't know if that could possibly be participating in the trigger? J
  16. Bounty, Or you could use a brass "T" from the hardware store to add an O2 tank to your existing concentrator. That way you could bump up the LPM while hitting the start of your hyperventilation. Then turn the tank down as you slow your (Post peak hit) breathing. I do love Batch's redneck bag trick. J
  17. Snap of the O2 output on my Oxygen analyzer.
  18. All, To provide more specific information. yes an O2 concentrator can cause Nitrogen washout (and either damage or kill you). I don't mean to be to stand up on the subject but everyone should be crystal clear on the dangers and not think a concentrator is save to sleep with using a non rebreather mask (it is not). I have an O2 concentrator and it produces 96+% pure O2 after a 10 minute warm up period. (yes I've tested it, as I use it for mixing my dive gases). Nitrogen is the only gas removed via a concentrator "scrub". Other trace gasses pass through. So in effect my concentrator reduces the nitrogen content from 78% down to 2% to 3% nitrogen. 3% nitrogen is reduced enough to cause lung damage and the Alveoli in your lungs to collapse due to Nitrogen wash out. Again though, O2 is SAFE if used properly. Please ALWAYS cut the straps from the mask, so you're not tempted to leave it on (and possibly pass out with it on). 100% O2 is my (and most people with CH) #1 go to for aborting attacks. Don't be afraid to use it, but respect and be aware of the dangers. PFW, J
  19. I think the idea of having a concentrator that goes over 8 lpm is great in theory, but VERY bad in practical application (IMHO). If a person was to pass out after a hit (or have that post hit exhaustion, that puts us in an immediate deep sleep). If said person left their mask on, and continued to breath 100% O2 with the machine continuing to run. That person would have a high likelihood of damaging or even dying from Atelectasis (collapse of the Alveoli - air sacks in the lungs). Alveoli collapse can start as soon as 30 minutes of being on 100% O2. Alveoli require Nitrogen to stay filled and exchange O2 with carbon dioxide properly. Breathing 100% O2 eventually causes "Wash Out" where all the nitrogen is eventually exhaled and replaced by either O2 or carbon dioxide. I don't mean to scare anyone, but O2 can be very dangerous if staying on it longer than 30 minutes. If a person were to accidentally stay on it for 6+ hours while sleeping would very likely cause significant lung damage. As long as we use O2 tanks, there's little chance we would cause significant damage to our lungs. Once the tank runs out, we (most of the time) naturally wake up gasping for breath / air / o2. Hope this helps. J
  20. ThatHurtsMyHead

    Rookie at Busting

    Good advice Zgreek!! The O2 companies will do anything they can to get an extra buck out of us.. J
  21. ThatHurtsMyHead

    Long term Benadryl concern

    Interesting article. I'd like to see the source data as the conclusion seems very generic, with no facts presented. I'm not disputing the validity of her findings, just seems odd no source data was presented in the article. Update - I'm leaving my above comment for context, but did find the link to the JAMA article from that article. Lots of source data is presented in the JAMA article, but there doesn't seem to be any reason for their conclusion other than Anticholinergics were prescribed to the majority of those that developed reduced cognitive function. There's a million other missed data points from their data I can see. I don't see anything environmental (which is the leading theory on dementia to date - Aluminum exposure). It is a good start to see if prescription drugs could be the cause of dementia though. Interesting read, Thanks for posting! J
  22. ThatHurtsMyHead

    Aborting with o2 properly - please help!!!!

    Mike, The tingly feeling is normal for some people at different O2 saturation levels. Myself I feel a little buzzy, but again it's normal. What myself and many others find help the most for O2: 1) Get on the O2 as soon as you feel the attack coming. Don't wait for the pain to start. Get on it, when you feel the bad feeling it's coming. O2 early significantly helps reduce the length of the attack. I use to be able to stop my attacks after about 5 minutes. 2) Always stay on the O2 for about 5 minutes after the attack stops. If you come off the O2 too quickly, the same attack can come back. 3) Sounds like you have a non rebreather mask. If you have a group of holes on the mask that don't have a valve (disk) to stop air from coming back in. Put tape over it. That'll prevent regular air from coming back in. 4) Cut the strap off and hold the mask to your face. No need to remove it between breaths. Keep it on your face. Cutting the straps off, prevents a dangerous condition that you could pass out after the attack, with the mask still on your face. Breathing 100% O2 for an extended time (sleeping), can damage your lungs. Removing the strap allows it to fall away from your face if you pass out. 5) Try completely exhaling all the air from your lungs, then completely fill your lungs as quickly as you can at the start. maybe the first 5 minutes. The goal being to increase your O2 saturation as quickly as possible. Once your O2 saturation is elevated, then you can go to just breathing normally (as normally as we can during an attack). Hope this helps... J
  23. ThatHurtsMyHead

    Sorry for my absence!

    DD, Hope you're doing better. One of our Canadian friends, I think got the exact same thing. Had respiratory challenges, finally saw the doc and got the same diagnosis. Be well my friend! J
  24. ThatHurtsMyHead

    Pre-planned Legal fight ?

    1LS, Only speaking for myself. So far as I know no one using 'our' medicine exclusively for treating our CH has been prosecuted. IMHO, bringing unnecessary attention to ourselves would likely bring more negative attention than positive. There are many more naysayers that don't have the first clue about how bad CH is, would say we need to take an aspirin instead. Most of the world is too close minded, and narcissistic in my opinion. J
  25. ThatHurtsMyHead

    Can I get some Opinions

    TreeLove2, I'd say keep bumping the seed dose up, as long as you feel comfortable with it. The study that Dr Sewell did some years ago proved that the larger the dose the more effective it was for stopping our CH. The seed age also is important with how many we need to take. Seeds that have aged and have half the LSA content, we need to take twice as many to get the same effective dose of LSA. Please keep us posted. J