ThatHurtsMyHead

Ricardo (the REAL Ricardo) , Regional meets would be awesome. I just saw a little while ago that Denver has their own group get togethers. I wish more people were around me (but glad there aren't more people with CH, ha ha). It does sound like there's a lot of people in the NorthEast. J

I'm in!!! You might find light attendance here for a day or two, due to everyone traveling home from the conference. I just got back home late last night. J

Erika, Sadly, many of us with CH end up with permanent body damage due to the scripted drugs the docs hand out like tick-tacks... I don't mean to scare you, but hip replacement is a very real issue for many people that take high doses of prednisone. Please have your hip checked. MM can be very challenging to many of us, but it can be a real life saver. NO side effects after you're down from the dose. I'll make a change to that, one side effect many of us feel after several doses is a VERY good sense of well being. It's been documented to last for weeks to months, to years after our doses of MM (seeds, LSD etc). J

You did a GREAT job!!! Who knows your contribution, might have saved someone's life. J

Made it back just before midnight last night. LONG drive, but well worth it... Loved seeing everyone old and new!! I'm wishing next year's conference was next week J

Leaving this morning myself! Look forward to seeing you again DD! J

Hi friends, It looks like I'll be traveling to TX myself this year. I have a room with 2 twin beds reserved at the conference hotel, and am game to room share. Room is for 3 nights, 15th, 16th and 17th (checkout on 18th). If you don't have a room, or have a room at another hotel, but want to stay at the conference hotel, send me a PM / or post here. I figured with it being last minute, more people would see here than on the room share thread. Cheers! J

Treelove2, Have you read over the primary methods discussed on this site? Magic mushies, LSD, LSA (legal seeds), etc? Also, Have you tried energy drinks (they really help reduce the pain level of individual attacks)? Do you have 100% high flow O2 (Oxygen)? Do you primarily get the night attacks / day attacks, or mixed? Sorry for the 30 questions, just trying to get an idea where you are in regards to common cycle and attack treatments. J

CHF, Rocks!!!!

LeanOnMe, Does he have a diagnosis from the doc of having CH? If so, and the doc won't prescribe Oxygen, or refer him to a neurologist then I'd get another doctor. That one is worthless. 100% high flow oxygen works the vast majority of the time to stop the attacks. The doc should be smart enough to open his Merck manual, where 100% high flow oxygen is mentioned not once, but repeatedly throughout the CH treatment description. Some doctors did graduate, but NOT the top of their class, sorry to see you drew the short straw with that doc (I guess someone has to graduate with D's . Sadly it's somewhat common for some doctors to think they're smarter than the collective knowledge contained in the Merck manual. J

MJ, My ex wife stabbed me in the back several times. She didn't use a fork though, she had a lawyer do it for her... ROFL. (ok, back to being serious.) Have you tried the methods primarily described on this site? MM, LSA seeds, 100% high flow Oxygen etc? They all work GREAT (and significantly less damaging than a fork. J

TRIGGERS Many people with CH don’t recognize all the triggers that can bring on an attack. Some participants at the ClusterBusters message board put together this list of their triggers. Not all of these items are triggers for everyone, but we urge you to look over this list to see whether there might be something you are missing. Here are some comments that might encourage you. “It took me a long time to make the connection that I got hit not long after eating chocolate. When I stopped, those hits went away.” “For years I couldn’t understand why I got a headache 30 minutes after I left work regardless of what time I left. I was blaming the dusty atmosphere until I read that relaxation was a trigger. It was an epiphany!” “My ED meds! Who knew?” “I learned the hard way about epinephrine when used as a dental anesthetic. I thought it was the dental work itself that triggered me.” “MSG (monosodium glutamate) is a huge trigger for me, and it is in a lot of foods, such as many soups, flavored chips, and cold cuts. Reading labels carefully has made a very big difference for me.” If you have additional triggers to add, or comments to make, please visit the “ClusterBuster Files” message board at www.clusterbusters.org. Atmospheric Conditions Barometric pressure changes High pollen counts (taking Benadryl along with the Vitamin D3 regimen can help with this one) High temperatures Events and Activities Airplane travel Dental work (When using anesthetics that are triggers. Anesthetics containing epinephrine (such as Xylocaine) and nitrous oxide have been identified by some people as triggers. Ask your dentist to use something else: Prilocaine seems not to cause bad effects.) Foods and Beverages Alcoholic drinks Aspartame (artificial sweetener) BBQ Sauce Caffeine at the wrong time [“My belief that the body maintains stasis when ‘insulted’ continuously....so best to withhold caffeine until needed for maximum effect.”] Cheeses that are fermented [“Bleu, brie, American, Swiss etc.”] Chocolate Flour, bleached white (white bread, cake etc.) Histamines [“Most of the food items on this list release histamine in your body. A low-histamine diet helped me a lot!”] MSG (monosodium glutamate, a food additive found in many products—see additional information at the end of this list) Nitrates and nitrites (often added to processed meats, such as bacon, hot dogs, jerky, and luncheon meats) Shrimp Sugar: high-sugar foods Locations Altitude: high-altitude locations; travel from high altitude locations to lower ones and from lower ones to higher ones Medical conditions Illness [“Any time I get sick I get hits.”] Low blood sugar Medications and Supplements Amoxicillin Amyl nitrate (used medically to treat heart diseases such as angina, and also used as an inhalant drug, often called a “popper,” that induces a brief euphoric state) Epinephrine (anesthetic used often in dental work; see discussion under “Events and Activities”) Erectile dysfunction medications (Viagra, Cialis) Marijuana Nitroglycerine Nitrous oxide [“Dental anesthesia...never experienced personally...but an enlightened anesthesiologist I met told me”] Odors Burning leaves Gasoline Paint Perfumes Smoke Solvents Welding fumes (zinc welding fumes was an INSTANT hit for me) Personal Habits and Activities Changes in routines (eating, sleeping, exercise, etc.) Gum chewing, or excessive jaw movements Strenuous exercise Sleep, Rest, and Relaxation Baths [“Showers have never triggered a cluster for me. It’s about the relaxation.”] Irregular sleep schedule [“Any change in sleep patterns, especially if I am startled awake.”] Napping Relaxing [“For years I couldn’t understand why I got a headache 30 minutes after I left work regardless of what time I left. I was blaming the dusty atmosphere until I read that relaxation was a trigger. It was an epiphany!”] Stress and post-stress [“Coming home from work, finishing a stressful project.”] Taking a bath Additional Information About MSG (Monosodium Glutamate) Many people with CH experience MSG as a trigger. As noted above, MSG appears in many prepared foods, which can include broths and soups, flavored chips, cold cuts, frozen dinners, and ranch dressing. It is a standard ingredient in Chinese restaurant food, but other restaurants may use it, too. You might want to ask and to order food without MSG if it’s a trigger for you. One person provided the following information: “MSG hides in our food supply under many guises. I’d add a caution to research glutamic acid content of foods...same action in the body as MSG. Examples of higher levels include anchovies, tomatoes and mushrooms........ Other Names for MSG: The A to Z Guide: Accent (food additive) Autolyzed Plant Protein Autolyzed Yeast Aginomoto Calcium Caseinate Citric Acid (when processed from corn) Gelatin Glutamate Glutamic Acid Hydrolized Plant Protein (HPP) Hydrolized Vegetable Protein (HVP) Monopotassium Glutamate Monosodium Glutamate MSG Natural Flavoring Natural Meat Tenderizer Sodium Caseinate Senomyx (wheat extract labeled as artificial flavor) Textured Protein Yeast Food or Nutrient Yeast Extract ”

ErikaLeigh12890, Silly question, but if the magic M helped you years ago, why not hit it again? Or Change to the RC seeds? PFW, J

AnitaJ, I sure hope you can convince him to hit the O2 again. It would be pretty sad if he decided not to (really) try the #1 abortive most of us use. Since the holes were open on his mask I'd give it a 99% chance that's the reason it didn't work. He really wasn't getting 100% O2 at all. J

DD, Yep, I'll be making the long drive. All I have are florida sandals. I do have a new pair though. J

AnitaJ, Concur with CHF above. You only need to tape the open holes. A small piece of duct tape covers them perfectly. Since the bag is staying inflated now, you might find once those holes are covered to prevent outside air from coming in, that the bag might start collapsing now. That's a bit of a good thing, as it'll mean he's getting more of the O2. J

Agreed with CHF, Your symptoms don't seem to parallel classic CH symptoms. Intensity of the pain is pretty high on the list for most CH'ers. I don't think I've heard of anyone having pain in the back of the head either. CH is normally in and around the eye socket / temple. Does alcohol or chocolate trigger a headache? Those are sorta the big two (food) triggers for CH attacks. J

dsordway, Welcome to the board. What you report is actually one of the parallel abortives many of us take along with our 100% high flow Oxygen (O2). Instead of a pill, try drinking an energy drink. Red Bull, Monster and many others have both Caffeine and Taurine among their main ingredients, that have proven to have a significant positive impact on individual attacks. J

AnitaJ, I'm sure Bill and others (resident O2 experts) will chime in, but in the interim: It sounds like your mask has a group of 6 or so holes in a circle on each side of the mask? Is there a disk over the group of holes that acts like a one way valve? (lets air flow out when he exhales, but prevents outside air from coming back in? All the recent masks I'm seeing they're shipping with one or both exhale groups of holes completely open to the air. If they are open, he isn't getting 100% O2. He's getting a semi low concentration of O2, because it's mixing with outside air being pulled back in through the holes. I use duct tape and tape over mine. That allows for 100% O2 concentration. If he's getting less than 100%, that'll darn near prevent the O2 from helping. I've found if I have anything less than 100% it's useless for me. Please keep us posted J

AnitaJ, I think it may be common for medical O2 supply companies to insist you take the concentrator. They get big $$$ out of insurance companies for the monthly rental of those. I had one for a short while and the medical supply company charged nearly the entire cost of a concentrator for the monthly rental price to my insurance company. I've twice had to refuse them from O2 med supply companies. You may be running into the same scenario with the size of O2 tanks. My last two O2 supply companies refused to give me a large tank for home use. They said it was against their company policy for home use to have larger than 'E' tanks. I think the more logical answer is, they want the larger $ payday from the insurance company to make trip after trip out and replace numerous O2 'E' tanks instead of an occasional larger tank. Just my opinion anyway. re, O2 not working today: Not sure if this is what you've run into, but I find that if I don't get on the O2 as soon as I start feeling the attack come on, then it doesn't do much or even anything for that attack. The real key to the O2 working is you have to get on it at the first sign the attack is coming, and not after the pain kicks in. PFW, J

Dane, Welcome to the board. Glad you found us. Please open a new thread with your info, history etc. There are lots of people here that are more than eager to do what we can to help. Have you seen a neurologist? PFW, J

CHF, Yea, I'd agree a separate category for smells. In the fall, burning leaves are a guranteed BAD trigger for me. Not much of any problem with other smells, but burning leaves = LONG BAD attacks for me anyway. BBillow, Please take a bath every once in a while (joke) J

Pro2See, This post reminds me of the scoff I got from my doc wayyyyy back, when I told him I figured out Chocolate was triggering my afternoon attacks. He said there was no way chocolate could trigger a headache, that they actually contain chemicals known to reduce headaches. He acted like I was some Dumb A or something.... Didn't believe me for one second, and treated me almost with contempt for the rest of the visit... Sad, doctors for the most part don't really listen to their patients. J

Pro2See, I had a suspicion your night time snack was one of the top triggers. For me dark chocolate is a faster / worse trigger than regular chocolate. You should start doing much better with the night attacks staying far away from any hint of chocolate. What you describe of feeling like an attack is coming but never really arrives, many of us classify those as "Shadows". Usually it's a bad 'feeling', but no pain. Sometimes might have small sliver of pain, but nothing like a real CH attack. Sometimes might be an ache in the neck (but no CH attack). I think we all get them, but some describe them slightly different. The common point is we 'feel' different and bad, but no CH attack. Take a look at the trigger list, and try to cut out everything you can. Maybe your first go around, don't cut out the bleached white flour and sugar as those are VERY difficult to avoid. Once you establish a new attack baseline (hopefully significantly less) without the main triggers. Then experiment with cutting out the bleached white flour. Happy to hear you got some better sleep without the dark chocolate bedtime snack. J

AnitaJ, You're a ROCK STAR!!!! Don't let anyone say different. I think sometimes the supporters of us with CH have it worse. You have to stand by and watch, something you really can't do anything about. Just my opinion, but anything you can do for him before or after an attack, I'm POSITIVE he appreciates. As for during the attack; There really isn't anything you can do, but let him know you're there. Just knowing someone is sticking around is HUGE and I commend you to the sky for it! We go through ups and downs and don't know where to turn often. J