spiny

Glad to see you back on the board AO!

1EYEcires, I ALWAYS recommend the Optimask!!! It is inexpensive and the BEST! Seems like it has been posted a while back that you can cover those vents so that you get effective relief until you get the Optimask. Cheers!!!!!!!

Right on BB!!!!!!!!!!! [smiley=tekst-toppie.gif] Don't they use nitrus (sp) in cars for that extra speed boost? Well, something like it anyway. Flip the switch and get the boost till it runs out. My limited knowledge is showing isn't it? :

Shahooty, In general, they taper off for me. The number remains the same, but the intensity drops. Then they shadow at the normal times and then stop. spiny

Let's not confuse the issue for kristikay!!! The recommendation for 25lpm is based on the fact that 15lpm does not supply enough O2 for many, while 25lpm will supply enough for most. 15plm is the minimum flow I have seen and heard stated as effective. Why waste your money on buying two regulators when you find that you empty the bag at 15lpm???? Just because you have the 25plm flow does not mean that you need that flow at all times or for the entire session. But, when you need it, you need it. Dial it up or down as your situation demands. I think we all agree that a non-rebreather is necessary. Correct? Also, that a nose cannula is not effective the same as an O2 concentrator is not. Neither supply 100% O2 to breathe. The bone of contention seems to be the total flow available, right? Some say 15lpm is sufficient and many say it is not, correct? Well. I would hate to acquire a 15lpm only to find that my breathing out-runs the supply and I have to get another regulator!!!! > It would be a waste of time and possibly a waste of money. The discord is confusing and not helpful. spiny

Get the non-rebreather from your supplier! It is a mask with a bag attached. The bag fills with O2 while you exhale, so it is not so wasteful. At the start, breath deep and exhale completely with force. At this stage you hyperventilate some, which is good, usually due to the pain. As the pain recedes, your breathing will slow. Now, if it took 5 minutes or 60-70 breaths, stay on for that amount again, breathing normally. The 25LPM will provide enough O2 to fill the bag during exhale for most people. The Optimask is the best non-rebreather. 15LPM is the minimum for CH and does not work too well. If you cannot get a 25lpm regulator there is an easy way to create the supply with the 15lpm. The mask is about 30.00 and worth twice that. Since you have a nose thingy, it appears you have a cannula. It will not work worth a flip and will waste your O2. Talk to the dr and supplier. One or the other should get it fixed asap! You do not need supplemental O2, you need pure, straight O2. A cannula just raises your O2 slightly, mostly you are still getting air!!!!!!! spiny

'Debilitating Neurological condition' I tried Cluster Attacks for a year to no avail. My new one usually gets an 'Ohhhh" and no more questions or comments. My favorite theoretical solution: Clamp a wire to the eyeball and another to the temple. Now, shove both into an outlet. When their eyes go blank and they drop, remove the wires from the outlet. When they wake up ask how they enjoyed their 'headache'. 8-) I have given up trying to explain to anyone. My friends already know people die from this, the rest don't matter. The Nat Geo show helped inform a lot of people about it. But, since it was about 'drugs', a lot of people would not watch it. Surely did give my husband a new perspective though. To see men dropped by it showed that I handle it pretty well. Now he understands how I can bend the steel bars on my headboard!!!!! He also understands that most of us need to be alone most of the time when it hits and it is not because he is a bad husband. spiny

O2, O2, O2!!!!!!!!!!!!!!!!!!!!!! Your best friend! Insist on a 25LPM regulator and get the Optimask from this site. Learn how to use it and use it at the first sign of an attack. In my opinion, it is the best medicine the doctors can give you. Many of us have had teeth pulled and sinus surgery for what was in reality Clusters. It won't help. Neither will antibiotics for the proverbial sinus infection. Especially for women, doctors will hit you with the migraine diagnosis. Many still think that clusters are a 'guy only' affliction. They are wrong. Most meds are passed over to us from the migraine medicine chest. To my knowledge, there is no CH medication actually marketed today. Soon maybe. All the best, spiny

bb, You can always ride the elevator up the Sears Tower and look at the gap in the floors (elevator vs tower) when you get to the top! ;D ;D That is pretty exciting if you are afraid of heights! : Presuming said tower is still there and open to the public.

Tony, Yes, I have gotten scared and felt like I was going to jump out of my skin. CH got worse. >Â No one makes loud scary noises behind my back anymore when the dragon is active. spiny

weatherman, I live in the mountains. When CH is active, I don't go off my mountain except for emergencies. I get hit on the return trip which is about 3000ft up in 35 minutes. Wonder what the baro. change is for that little bit of altitude change?? :-? Once I fell asleep on the return up and woke up with a really lovely CH. > Never again!!!!!!! No, I no longer fly. That aside, I really like watching the leading edge of an incoming front. It is often beautiful. Thank you for the weather info! :) spiny

An armed society is a polite society. Fingers crossed, but it is not looking good so far as attending. Farm and family have become almost 24/7. Perhaps the Fairy Godmother will show up to aid in my getaway!!!!!! ;D

I suspect that if I moved there, they would have a Tsunami within a week! :D Jeff would likely run me out of the state within a week for my bad weather prediction traits!!! Bring that freight train by Jeebs, so I can load up and go before Valentines Day! ;D Can the dogs and chickens go too? I think I noticed 'a fungus among us' once or twice during my FL days in the 70's!!!! 8-)

brs82, I take 10 to 20 mg of Melatonin in cycle.

I was 22 and was given a really great concussion. Headaches started 3 months later. Lasted 3 years, but about a level 5. EEG, etc., migraines they said. Beta waves were screwed up?! After 5 years, abandoned all meds and was better for over a decade. Mid 40's, Trigeminal Neuralgia supposedly. Could not close my mouth as the teeth felt like mountains in my mouth. Not like they interlocked at all!!! Pred. prescribed. Spent 10 days or so sleeping on the sofa on my back and putting heat on my face. Pred knocked it out. Mid 50's, got a really good taste of the dragon for a few months running. Carbazapine (spell?) fixed it, till I sort of OD'd on it and had triple vision!!!! I have had teeth pulled, antibiotics for sinus infection, sinus surgery, etc. Diagnosed myself and took the info to the Dr for him to read. 'Well, I'll be danged, women don't get that.' In the last decade they have ramped up and lasted up to 7 months, 4 per night that lasted 2.5 hrs. each. Had to drag hubby to Neuro with me to get any meds! > Women are weak little things who can't take pain. Never mind I had a C-section with no pain meds after!!!! Yeah, we are the 'weaker sex'. Took a boatload of meds that sometimes worked and made me nuts. When they tried to put me on Prozac I bailed. Now, I am here, have welding O2, etc. and am better than I have been in over a decade. MSG sucks for many and it is not always listed. Stay away from it on general principles. O2, Melatonin, D3 regimen, caffeine, are dailies at my house. Pharma is not part of my day anymore. Note: I am with Jeebs on the 80's. 88 is when it really started to kick in for me. Lordy (sorry Jeebs, it fit! :-[), that is a long time ago now!!!!!!!!!! spiny

Vickle, Use that O2 correctly and you will find it to be a huge gift from whatever you believe in!!!!!! O2 rocks, when used correctly! Fingers crossed here for you. spiny

Hi didgens, Just one thing to add. Barometric pressure drop seems to affect many sufferers. So, does the pressure drop when the Santa Ana winds start? If so, this could trigger a cycle or just a single rogue CH. Also, it is very common for a cycle to start around the Solstice or Equinox. Sorry I can't add more. spiny

Bob, Never be concerned about your post being too long or anything else here!!! Info is good for members so they can advise and it is also good to state it and get feedback that says 'normal'. It is much harder to bust a cycle than avoid it with maintenance dosing. Just to let you know. It sounds like you are approaching it correctly. As stated above, taper off the Prozac when you decide to throw it overboard. As Doc said, a short course of Pred. can be a BIG help. Long term use can cost you your hips! Short term, it is the only pharma that really helped me. Tapering off of it was bad as my cycle was not terminated and came back hard. Slapbacks are a bitch. Wrong time of day/night, worse, different all around. But, they are a good sign and hopefully that is what you are experiencing now. Bottom line, they run for a day or three and then are gone. When the head says 'hello' again, it is time to bust again. The dragon is devious. Barometric pressure drops are really hard on many sufferers. Right now, there is bad weather all over the country with baro drops that kick in the CH for many. What I am trying to say is, there is more to this condition than we often think of. You bust, it sucks, the bust must have failed. Not necessarily. Give that last bust a few days yet before you decide. If you are still in a really bad place, take Doc's advice and get a steroid for short term relief. But, that two days that you were PF the last bust indicates, to me, that you are getting there. It is not an easy or always short road, but it definitely goes to a better place than where you are now. Getting the cycle killed will most likely improve your mood so much you won't want the Prozac!!!!! In 2011, I had a 6 month cycle. In 2012 it lasted 7 months, all night, every night. This year? The occasional 'hello'. Nice difference. 8-) BTW: Congrats on the quick diagnosis and getting the O2! 8-) all the best, spiny

I think the mention of the optic nerve is important, with respect to CH. Personally, a 'flash bang' view is sometimes part of the CH in progress. Flash of light, bang of pain. I am under constant surveillance by my eye specialist due to change in eye color and no issues have been uncovered that directly relate to CH. But, the Dr is concerned and insists on maintaining frequent exams. Coach, get the eye exam. It is a good idea to put concern to rest so that you do not worry about your eyesight! I know that you did not mention loss of sight as a concern, but it would be a good thing to clear off the map! spiny

Yes, it is Ting. Thank you for reminding us. Hugs!!!

stevo, I tried a super B vitamin that contained all the B's, including B12. In about 2 weeks my tongue became very red and raw. Checked with the doc and B12 will mess up your tongue sometimes! > Apparently that is why people get B12 shots, to avoid a raw tongue. Now I just stick to Batch's regimen. all the Best, spiny

A bit late to this thread, but I only use the mouthpiece. Mask hurts.

They used to have a sign up sheet available on their web page. I used it. Initially I received updates via email, but no correspondence lately.

heilette, I am so very happy for you!!!!!!!!!!!!! You are a super star. [smiley=tekst-toppie.gif] Keep it up and you will win the battle!!! You get a [smiley=vrolijk_1.gif] spiny

LOTS OF LUCK!!!!! I hope you win really big Denny!!!!! spiny