ThatHurtsMyHead

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

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

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

Snap of the O2 output on my Oxygen analyzer.

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

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

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

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

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

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

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

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

I think using seeds or mm would just be personal preference. I don't have any information if busting using alternating substances works the same as using one. IMHO, I'd stick to one of the two for each series of busting doses. (sticking to the same substance at each 5 days). Most of the time 3 doses are all that's needed, but often more are needed. I'd stick to dosing every 5 days till you're 100% clear of any CH. PFW, J

Wow that's a scary read. I can't believe something like that passed! By the definition they're using, a paper bag could be illegal, because someone could use it to hyperventilate and therefore change their mental state when they get buzzy... The way they have that law written is seriously messed up. J

Ahhhhhh, that's horrible... Sorry to hear. Which seeds did they ban? Both Rivea Corymbosa (RC) and Hawaiian Baby Woodrose (HBWR)? J

++++++ The seed success reports!!!. J

SOS, I'd say up the dose to wherever you feel comfortable. The general rule most of us have found, is you need a threshold dose for it to work on our CH. Meaning, you should feel the effects, for it to beat down your CH. It's typical for seeds to have little to no LSA if they're old, which is the primary reason I usually recommend to keep upping the dose till you 'feel' it. J

Kelly, I'm at a bit of a loss for words. Lots of people gave you some really great advice here that you chose not to take. yet you sorta back hand them? We're still glad you're getting some pain free time. Seriously. As for the steroids. They can and sometimes do terminate cycles. Other times the CH comes back shortly after stopping the steroids. I didn't see in your post but hope you didn't use the imitrex? That stuff can wreck a healthy person. I couldn't imagine what it would do to an unborn child. Any doctor that says it's ok for someone pregnant is a crack pot...!!! The Vitamin D regimen has helped thousands of people with CH reduce their attacks and pain level. That's a fact. If you really have CH and it comes back, you're always welcome here. (And the alternative treatments are SIGNIFICANTLY better on both your body and alleviating our CH than ANYTHING the doctor can script).. That's also a fact that thousands of us with recurring or chronic CH will swear by. PFW, J

It's my understanding as well that the entire list of supplements are important. Some don't absorb as well without the others. Some leach other nutrients out of your body, that's replaced with the companion supplements. J

Sous139, Please be very careful with the verapamil. Years ago it gave me heart palpitations called PVC's (Premature Ventricle Contractions). It took 3 YEARS to slowly go away after I quit the verapamil. If you have a healthy heart you need an EKG to ensure it's not bringing your heart rate too low... If you're dizzy it could be causing bradycardia (heart beat too slow), and that's VERY dangerous. Sorry, I don't mean to be negative. We all get enough of that when in cycle. On the positive note you can use LSA seeds (HBWR and RC). They are legal and hardly have any effects when taken in the right dosages. J

Jeffrey, That sounds awesome. I'm a bit jealous J

zgreek, I'd start low maybe 30 RC seeds. 1) Grind (coffee grinder works great) 2) Soak for 2 hours in Distilled water with a few drops of lemon (real lemon). Use a shot glass, half filled. 3) drink the entire sludge, slimy stuff down (it's pretty vile) Some people filter the liquid, but I've always had problems getting all the liquid out, as it' makes a sorta slimy jello like almost stuff. Make sure you have some benadryl and emitrol (anti nausea liquid) close by. benadryl if you get any uncomfortable vaso constriction. (I usually get a little). If you get any stomach cramps or nausea, take a few sips of emitrol and it usually leaves in 5 to 10 minutes. If not feeling better by then take more. It's just glucose, so you can take as much as you need to stop the nausea. Some people take it just before bed. I prefer to take it around 3pm. That gives me enough time for it to work through my system before bed (around midnight). Ping with questions. J

zGreek, IMHO, I'd start with the RC seeds. They're legal, cheap, easy to dose and little to no psychedelic experience. J

CHF, TONS were discussed, but the only take away that I got that seemed to work was "Up the dose". It sounds like more of us that are on MM long term are running into it slowly stopping it's magic. The good news is continuing to change substances seems to help. While psychedelics are cross tolerant for recreational use, they don't seem cross tolerant for our CH. Of course me personally am on my third substance after the first two stopped keeping my CH away. (but I got most of 6 years pain free from the first two!!! Wahoooo). J

Rock on DD!!!!!!!! You da man! J