spiny

That is out sister site capt. Where many of us bought our Optimask. The menu on the left here lists CH.com message board, etc. You can get there from here. Lots of stuff about pharma to read if ya want.

RSoxguy, Back when my CH got bad, I researched everything. Including SUNCT. Why? Because I needed answers and CH were not supposed to affect women as often as men. " Most of the time SUNCT occurs spontaneously, however attacks can be triggered by simple daily stimuli such as touching the face or scalp, washing, chewing, eating, talking, coughing, blowing nose, or showering. they also can be triggered by light (including sunlight and fluorescent lights) and injuries. Stimuli capable of triggering a cluster headache, including alcohol, smoke, strong smells and a warm environment, can also trigger SUNCT in a few patients.[1] In some cases, patients of episodic SUNCT only exhibit symptoms biannually in spring and fall. This periodicity suggests that the hypothalamus, which is responsive to day length and photoperiod for regulating circadian and seasonal rhythms, has a role in its triggering.[2]" You are chronic, which sucks. Also, this disease has only recently been defined, which also sucks. "Inefficiency of indomethacin usually indicates SUNCT over paroxysmal hemicrania." But, the one helpful thing may be that the Hypo is indicated in this as well as CH. Therefore, the natural meds for CH may help you, so here goes. Melatonin: Take 30 minutes before bedtime. Start with 3mg and work up to 10mg. If you can still get to the john during the night without weaving as if drunk, you are in the correct range (my experience). If it works, it will buy you a few hours of peaceful sleep. D3 Regimen: If you want to try this, we will post a link. It is just vitamins. Omega3, D, and others. I am not completely up on the current protocol others are following now. I take Omega#, D3, Calcium, and Potassium. It may have changed over the months, but by body likes these Vits. Energy Drinks: Your hits are so short, it may not make a difference. But, I drink coffee every pm as a preventative. Energy drinks work better for many. I can't handle them. But, coffee every afternoon is a big help for me. MJ: Most with CH find it is not a good thing, but some find it helps. If you are needing to eat more and gain weight and it works, keep going there. Vit M: Ok. Seeds don't work for all, so they move to Vit M. Over time, some stay with M, others alternate with seeds. Take either every 5 days. You may feel worse for a few days, but by day 3-4, you can record a decrease in hits or severity of hits. They may ramp back up on day 5 or 6, then you hit it again. As time goes on, you find a maintenance schedule that works for you. It is trial and error and you learn as you go. As you learn, you stretch out the time between doses to what works for you. Tic Delaureux (sp) is now called Tri-geminal Neuralgia (sp). It is set off by wind, kiss, eating, etc. Very similar to what you are experiencing. But, I suspect yours come without external stimilus. Yep, they cut on ya for it if it becomes chronic. They used to hit the nerve with an anesthetic so that your painful side had no feeling for 6 months or so. Don't know if they still do that or not. You are in a bad place and I feel for you. :'( At least here, you have people who understand part of what you are going through. spiny I would try the Vit M before I let them cut or anesthetize half of my face!!! Read the threads regarding it and ask questions.

Javier, The MRI and MRA will tell the doctors if there is a structural problem causing his pain. They check arteries, which can be very important. These are standard tests for CH, with a good doctor. They rule out other nasty stuff. Perhaps let them know that an O2 tank sitting in the corner is insurance against the pain, not a sign of sickness. I don't like looking at mine either, but I sure am glad that it is there! All the best spiny

Lurking is a good description. Watching and waiting for your guard to be down. AKA: Sleeping. Sometimes I have a shadow most of the day and other times it hits as soon as my head hits the pillow. >

Renee, Have you noticed that many dentists now will hold your lip or cheek out to give an injection and wiggle it while injecting? It is the same thing. Your mind is focused on 'What is he doing? That feels really weird!", not waiting with gritting teeth for the stick. When I know something painful is about to happen (dr, etc) I will take two fingernails and pinch myself really hard to distract from what they are doing. Or, barring that, bite my cheek or tongue.The confusion helps. But, and this is a big but, the pain you are distracting from is short lived. Therefore, the self inflicted pain is also short.

alley, You are correct. But, sometimes you are stuck without other viable options. Then, it becomes a question of will. I doubt my 'will' would overcome a 9 to 10. Fortunately I have a way to keep the level down a bit when changing altitude that enables me to get home. The roads around here are a bit different from most of the rest of the nation. Two lanes, no shoulder, no pull off sections, twisting up a mountain. One side is straight up the mountain side and the other straight down the abyss. The only place to stop is in your lane of traffic. Then, all in my car would die, as well as the car that hit me and any oncoming traffic. As you know, I have spent months up here without going off the mountain. That is the reason.

capt, I call those little achy signs a 'shadow'. For me, they mean I will get a nighttime hit shortly after lying down. The shadow just shows up. Annoying mostly. Then, going prone seems to push it into an attack. I just take them as an indicator that it will not be a peaceful night. The attack does come on fast, but a shadow can last for hours during the day. To me it sort of feels like a thumb pushing into my temple. Pressure pain, not 'real' pain, if that makes sense.

toostrike, Have you tried Melatonin? It works at night for many here. It may not stop the CH, but it will often buy you a good hour or more of sleep before the beast comes knocking. Suggest you start with ~6mg 30 minutes before bed. If you are ok getting up to hit the john at night (no drunk wobble) you could probably up it. My experience is that 10mg is a good starting place. Be aware, taking high dose out of cycle will make navigation to the john tough and you could feel 'hungover' the next day. Melatonin levels drop during cycle, so replacement seems to help. Not for all, but for many. Home remedies abound. Some are well documented to work for some. I am sure that you know what I mean. Push for that O2. It is a life changer. Good luck.

RSoxGuy, That sucks big time. > I read about this dis-order a few years back and was appalled at the time. I have no suggestions really, I just wanted to make you feel welcome. I have had a few ice pick headaches in my time and that would most closely correspond to what you have. They are very intense and really bite. There are people with more experience here and some will respond soon I bet. I do know this: Lack of sleep will really change your day, month, etc. It ruins my attention span sometimes and my my mood a lot. I don't want to imagine this being a constant thing rather than the 6 months I have endured. Welcome and I hope someone has suggestions that will help. Have you tried mushies? Perhaps the outcome would be different than it was with seeds. Just a thought. spiny

Renee, From my other post, you know that I count, massage repetitively, tense muscles and make repetitive motions. All of this only helps to a point. Then, they are all pointless. If anything, I rock. On O2, I rock constantly to allow me to stay put!!!!!! I understand the needles, but I doubt that prepping for a suspension would stop the head pain. There just comes a point when nothing works and I have to ride the pain unaided. Caught while driving: No talking, no nodding to another person, no music. Drive intently. My daughter once told me she could feel the tension of my focus on driving while having an attack. I had to nod and ask her not to speak to me again till we were home or this was over. Whichever came first. I needed to maintain focus. So far, I have not had a Kip9-10 while driving. I am very thankful.

toostrike, I use the CGA-540 on 60cf and 90cf tanks. The other regulator is screwed into the top of a smaller tank I believe. The site I gave you has several pics of tanks too. The other regulator screws into the top as I recall. Also,, you can Google O2 tanks and there is a listing with photos of several different sizes and connections. cheers

Yeah, I do. Perhaps not in a building with four walls and dogma, but heart felt thoughts going out into the cosmos from your mind. Spiritual my kids call it. Not religious much. Been that before and I never could get past the part where everyone else is going to hell cause they don't believe 'this way' or they never heard the Word of the Bible. I believe we are all going to heaven, in one form or another. Perhaps I will tick off some people here, I hope not. I don't intend to. I do feel that a Supreme power exists and send thoughts out to it. I say thanks mostly. There is always something to be thankful for so I focus there. I feel really guilty asking for anything for me. But, I do send good thoughts around the world. That is the way I look at it. So, I will send some across the pond to you. Need some 'chillaxing' time myself! ;D

toostrike, http://www.wtfarley.com/Oxygen-Standard-Body-Click-Regulator-CGA-540_p_55.html This is the one I bought. 55.00 with barb and 25lpm. Fast delivery and no script. Flea-bay is a bad idea. Some sell dead/non working units. Optimask comes with mask and tube. I use the tube as the mask kills the trigeminal nerve which is already exploding. Order it from sister site. Should be on the menu on the left side of this page. ~30.00. Rent your tank for starters perhaps, but if you buy it, any company will fill it. Rental means you must go to the rental company for refill. No deposit and it is yours. I get mine filled for 38.00 /150cu. Live in the sticks, so perhaps a tad high. But hey, my guy will bring me a refill on Sunday for free if I need it. Worth it for me. hope this helps Melatonin: Have you tried it? I use 10mg and up in high cycle. Start with 10 and work up if need be. It will provide a few hours of sleep early in the night for most. I probably take more than most when I get up to 20-30mg by 4am! But, I don't have a problem with it. Out of cycle, no way!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! My neuro won't prescribe O2 either. 'Causes rebounds.' he says. > i informed him that if you use it correctly, it will not! Still got a 'no'. Idiots abound everywhere. Good luck! spiny Don't stare at this screen too long, it can hurt!!!!!!!!!!!!

CHkire, Have you tried taking Melatonin at night? Many of us find it helps with night time hits. I would suggest ~ 10mg. Start with 3mg and work up as long as you don't feel too woozy when you get up at night. It can hold off that first attack for a while so you get some sleep. Most effective when not in full high cycle. Good Luck

Hey there!!!! You can buy O2 from your local welding supply co. I suggest buying the tank, not renting. That way any supply will refill it with no problem. If you lease/rent you must go back to the tank supplier. You can get the Optimask on sister site.Click the menu on the left of the page and you should see a link. Can't try it now,typing this! Cost about 28.00 Regulator can be bought on line for about 55.00. Get one that goes up to 25LPM at least. Higher is better for some. Make sure it has a 'barb' so you can connect the mask line. Then you are all set to go!!!! Remember, no oil on the fittings! Connect it up. Tighten down the fittings and turn on the tank, not the regulator. It must be in the 0 or off position. You should get nothing, no hissing or whistling, silence after the valve opens. That means you are tight. Not much uump needed. 1/2 turn past good resistance should do it. Do not over tighten or you will be -issed trying to change tanks during a hit! Note; Guys tend to over tighten stuff! Hope this helps. The computer thingey - I get it too. Kicks it off sometimes. >

'I stumbled on a fine woman whom I love and loves me back. This makes CH irrelevant. Love is a fickle thing, but when it happens there is nothing more rewarding, comforting, and difficult. Keep dating and you will find one worth fighting for. Big ocean, lots of fish.' THMH: this is the definitive answer. 'I stumbled'. I remarried after 15 years when I was in a long (decades) remission. The right woman will find you. Hard to do, but don't sweat it. My only problem is, my man blames himself for the reactivation!!!! So wrong. Love should be easy. 8-) If it is work, forget it. My opinion, I know. Funny, I just had this talk with my son who plans to propose next week!!!! Like, I just had this convo. two hours ago. When it is right, CH will not stop it. Love will conquer it all. Stay positive. You are a great guy and the right woman will find you. Just keep your eyes open! 8-) Ch no longer rules your life, remember that. Hope this was not too upbeat. I want it to be positive, not annoying. :-/ spiny the ancient

Don't worry about the Aspartame right now. Just go for the relief!!!! Meds: Well, they will give you what they think will work best. They are not always right. Good luck. Most work for a while (we think) and then tank. I think the dragon was on vacation, not that the meds were working. Been there too many times. Yes, in my experience, they get worse over time. It sucks. But, so it goes. Good Luck!!

That sucks the big one. But, my son has recently joined the CH group after having migraines since high school. Out of sight, out of mind. We all do it. I understand the hope. Be prepared. The dragon hides, but the sob is still there. O2 and caffeine. Coffee or energy drinks with Taurine. Always keep them on hand and use them at the first sign of an attack. Even if you haven't had a visit in years, be prepared!!!! I sound like a 'prepper'! :-[ Well, it does pay to be prepared with CH. Any variety will work I understand. B+ is recommended often from my reading. There is another, three word Oriental variety. Says something like 'Smooth Viewing' and some prefer it. Just get up and running before the beast does!!!!!!!!!!!!!!!!!!! Seeds are faster to get, so that is a good interim solution. May actually take care of the problem so farming is not needed. Good Luck! spiny

tooStrike, O2 and caffeine!!!!!!! Energy drinks or coffee, which ever you tolerate the best. Always hit it at inception!!! I too get nocturnal hits, all night. When you get woken up, you are up the chart already and don't have the opportunity to get a jump start on the beast. So, chug the drink or start the coffee and hit the O2. IMMEDIATELY! Then, stay on the O2 long enough. Otherwise, you will get hit again and soon. If it took 10 minutes to kill the attack, stay another 10 minutes minimum. Some people swear by extra water, others find no benefit. But, caffeine will help. Taurine also seems to help for those who can do the energy drinks. Try to get a drink with both if you prefer energy drinks. It makes a difference. O2: Ya need 25LPM at least it seems. Otherwise, you probably won't be able to hyperventilate as needed at the start. Dial the O2 to match your breathing. In the beginning of the attack, hyperventilating is needed. Because of the pain and for the relief. If a lower flow is prescribed, you can buy a different regulator online. Then, run with what works. You learn as you go. Let me know if I can help further. all the best spiny

Whooli has a very good point. MRI and MRA are both very important tests to rule out other problems. While the MRI is very common it seems the MRA is not so common. I would be very concerned if these tests had not been performed as part of the diagnosis. In addition, a mask without a bag is not going to support the needed breathing technique for CH. He probably needs to hyperventilate at the beginning of the O2 therapy to get adequate relief. No bag does not normally support this unless he has an on-demand valve system. In short, the bag allows for hyperventilation. It fills with O2 and allows the patient to inhale deep and rapidly with the pain. Then, while exhaling it fills again, if the LPM is high enough. A flow of 15LPM or less will not support this type of breathing. For good O2 flow at the beginning, 25LPM or more is usually needed. This is very important for us. We need to inhale deeply and exhale fully to get the benefit. As the pain recedes, the flow is dialed back to match the breathing of the patient. If he cannot get a mask that will allow this, you can 'rig' a hillbilly set-up. Let me know. O2 saved my life last year, so I am very strongly opinionated on this subject. It is safe and cheap without the nasty $hit you get from meds!! Used properly it will make a world of difference for him, assuming that the diagnosis is thorough and correct. Prayers to the Powers above. spiny Â

Javier, Can he get O2 prescribed for his CH? With a proper mask and proper breathing techniques the relief is miraculous. If energy drinks are out (taste,stomach issues), coffee works quite well too. Add all the cream and sugar you want. These two things will help a lot with shadowing, especially when used at the very beginning of the attack. In addition, many of the nasty drugs should be off limits due to his age. Many are not approved for use in patients under 18 and for good reason. As for alternative medicine used by many here, we will have to wait for them to post for you. My heart goes out to him and his family. Being a teen is bad enough without the beast in the middle. Wish I could be more helpful. spiny

Salander, I went to your site clicked on join and don't know what it did after that. Just says 'cancel'. What else do I need to do, if anything? thanks! spiny

bounty, Yes. As an episodic, I understand your denial. Out of head out of mind. : Being prepared to head off a cycle is a great way to insure a quiet fall or winter. What ever you can get first, as the saying goes, will be the best. Weather: It affects a lot of us. The barometric pressure drops and we get hit. So yes, weather is an issue. Rising pressure is good , for me, while dropping pressure is bad. Therefore, flying is bad, my mountain is good except when I have to go off it into the flatlands and back up the mountain. Up=falling baro. and bad. For many of us, not just you or me. You are not alone with this one. So, keep the barometer in mind. Some days the rogue hit will remind me to watch the barometer and act accordingly. If a weather front is moving in, be prepared. 8-) IE: Have your O2 ready and energy drinks or coffee. Rogue doesn't mean cycle, but I find it to be a warning. Glad you logged in so we can show you how great this community is at supporting fellow CHer's You can bust a current cycle and you can prevent a future cycle with this method. Preventative methods sure beat killing a full blown cycle. Easier and faster. They both beat toxic meds that we think are working only to find out that the dragon was out to lunch for 4-5 months! All the best! spiny

Congrats! :) Remember your headache log from last year? I do. You have made really great strides in PF time!!!! Keep On Trucking Renee. 8-)