Dallas Denny

Here ya go..hope this helps...the dx is called non convulsive epilepsy https://drive.google.com/file/d/0BwHf09yeneJnTllPQUpYWExncjg/view?usp=sharing DD

G'evenin lp3! So, what I know is they won't approve it for clusters as I understand it, BUT, I just recently read something on facebook about a CCH patient getting approval with the affliction being classified as some type of epilepsy. I'll see if I can find that thread and post a link for you. Dallas Denny

G'evenin Jon! Anecdotal, yes, but you are the 3rd clusterhead I've seen post about improvement or remission following chemo in the past 6 months.....real bummer to be in a position to become privy to those possible side effects I know but glad to hear of the improvement old friend! Dallas Denny

Welcome to the community Harry! Shit the bed Loretta!! I love me some posts like this right here! Hot Damn!! Dallas Denny

Hey Jimmys! Not sure where in Florida he is, but last I heard thathurtsmyhead was planning on driving to Austin. DD

Wonderful news razor!! So happy that you're getting some positive results! DD

G'afternoon Melanie I can only recall seeing a couple of SA clusterheads here over the years and I've not seen either of them post here in quite some time I'm sorry to say. I do however know of a gent from SA who's a fairly active member of a Facebook group for clusterheads.....one of the admins is a good friend that I met here several years ago so if you're on facebook I'll be more than happy to have Cindy add you to the group and I can message Hennie and see if it's alright to give you his contact information as he may know of other CH'ERS in ya'lls part of the world. There's also an interactive worldwide clusterhead map in the group that you can add your address to and it will show you any other members in your area. Welcome to the community but sorry you had the need to join us! Dallas Denny

So sorry to hear about Mary my friend! Prayers and positive thoughts sent ya'lls way from Okieland! DD

Welcome to the community criticalmass....so sorry you had the need to join us! Chf and Mit12 have already covered any suggestions I have but to reiterate: Batchs D3 regimen is effective for many ch'ers and very easy to put in place. Properly administered high flow oxygen therapy using the proper technique, with the correct set up is very effective as an abortive for the vast majority of ch'ers so please give us some details on your wife's past experience with it, flow rate? delivered via nasal cannula, mask, or non rebreather mask? Medical grade cannabis works very well for pain from my degenerated disc disease but doesn't trigger or help CH for me, however, many folks do find it to be a trigger. What type of brain surgery did she have? Dallas Denny

Hey Jeff! You CAN NOT let the welding supply folks know you intend to breathe the welding O2!! They are in business to sell welding gases and supplies....as long as you don't let on that you're gonna breathe it, it WILL NOT be a problem! I've always just walked in and told them I needed to lease a large cylinder of welding oxygen....no one has ever asked me any questions....however, if they would have, my story would have been that i had a bunch of heavy scrap metal to cut up and a friend was loaning me his cutting torch rig but he loaned out his O2 cylinder and it was never returned.....that eliminates questions about needing acetelyn....by telling them I'm going to be using a cutting torch, they'll also expect me to be burning thru a lot of oxygen....the real drawback is having to hump a large, heavy O2 cylinder around....but if I can manage it at 69 years old....beats the living hell outta doin without! DD

G'afternoon defiance Sorry to see that you and your Dad are going thru a rough patch! Don't let your docs decision define your course of action regarding oxygen! I just have medicare for insurance and they won't cover O2 for CH so I've been using welding oxygen for several years now.....a bit of a hassle but fairly inexpensive and it will be a game changer for your papa! Vent away! We've all been there! Sending positive thoughts and pain free wishes ya'lls way! DD

G'mornin and welcome to the community Niles....sorry you had the need to join us! I don't personally use energy drinks or shots so can't comment on that question but I'm sure someone will be along to address that for you. I've been dancin with the Beast for 32 years now....in the early days,before trex and O2, 30 to 90 minutes per hit was the norm for me.....fortunately, I've not experienced a 4 or 5 hour dance! So, how are you treating your ch? If you don't already have oxygen, that should be a priority....number one abortive for the majority of ch'ers! Look into Batchs vitamin D regimen as it helps a lot of folks! Dallas Denny

Hi defiance This from our sister site clusterheadaches.com: The following information was written by Margi, the wife of a cluster headache sufferer. It has grown to be know simply as the "water treatment". We've had so many requests for it that it has become it's own page so you don't have to search through all of the posts in the archives to find it. It won't work for everyone and may not work for you, but it may be worth a try. After all, it's FREE! Remember, consult your health care provider before starting ANY "treatment". The water treatment is very simple, yet tough to accomplish. It's a glass of water every half hour or at least every hour during the day. It's hard to drink that much water, but the more, the better. If the Beast wakes you in the middle of the night, drink another couple of glasses. Mike (my husband) noticed a dramatic reduction of pain within two days of starting the "water treatment" and his cycle ended within a week. He is still in remission 9 months later. If he feels like a cycle is trying to start again, he just pounds the water and the symptoms seem to go away. The secret to success is drinking enough water and sticking with it for a few days. You will become intimately familiar with the bathroom but who cares, right? This "treatment" doesn't work for everyone, but it has had amazing results for some. Also a good idea to take a multivitamin during this "treatment" - we wouldn't want you to wash out any of the 'good stuff'. Sincerely, Margi Water, water, water!

Hey Mit! Perfume, paint, solvent, gas.....yup.....went to play bingo a few years back and as I was at the counter buying cards, a lady walked by who had bathed in perfume....got hit before I got back to the table....had just paid $20 for the feckin cards so I just sat there rockin and dobbin them numbers!! DD

Hey Mit! Perfume, paint, solvent, gas.....yup.....went to play bingo a few years back and as I was at the counter buying cards, a lady walked by who had bathed in perfume....got hit before I got back to the table....had just paid $20 for the feckin cards so I just sat there rockin and dobbin them numbers!! DD

32 years with ch and always a "rightie".....damn, I hate to even thing about having to break the left side in!! DD

G'mornin Kelly! Welcome to the community! Sorry you had the need to join us! It would be a good idea to start your own thread in the general section but I'll be glad to answer your questions (and ask a few as well..lol). Great that you're in the process of obtaining the oxygen...it's used as an abortive measure, you need to get on it at the very onset of an attack....most folks need a flow rate of at least 15lpm delivered via a good non rebreather mask, preferably the optiO2mask available at the ch.com store for around $20. I routinely abort hits in 5 to 8 minutes. Many find that slamming an energy shot or ice cold energy drink containing caffeine and taurine at the first sign of a hit helps.....melatonin helps many cut out some of the nocturnal hits.....and many of us have found success "busting" with various indole ring substances which you can learn about in the numbered "buster files" As to coping, working, ect....once you have Oxygen in place and have learned how to use it effectively your life with ch will become much more manageable....I worked thru 27 of the 32 years I've had clusters....not always a cakewalk but doable....and, yes, there is light at the end of the tunnel...there are several studies presently in progress on new treatments for clusters by several different entities! Dallas Denny

G'mornin jkandola My understanding is that scholarships will be awarded by June 10th.....not sure on this, but I would expect that everyone who applied for scholarships will be notified via the email address provided in the application. DD

Looks like all the bases have been covered in the way of advice Emily so I'll just say Welcome to the community but sorry you need to be here! Wonderful to see you here jon!! Dallas Denny

G'mornin JP Costs vary....In Texas, I paid $100 deposit for a large cylinder (approx 8" diameter and 50" tall), $6/mo lease, and $17/refill....my supplier in Okieland used to chg $100 deposit, $50/ year lease, and $20/refill....when I started a cycle last year he had quit leasing so I had to pay $300 for a tank and $20/refill. Just don't let them know you intend to breathe it! Medical and welding oxygen comes out of the same spigot...the only difference is that they purge medical tanks prior to refilling while with welding tanks they just Crack the valve and give it a sniff test. I've been huffin it since 2009 with no ill effect. DD

Hi drjparon I can't help you on your first inquiry...I have only medicare so I use welding oxygen. Although I've heard of folks who say they abort with a concentrator, they aren't adequate for most of us.....concentrators don't deliver 100% pure oxygen. DD

I understand BobB....right there with ya brother! DD

G'evenin bdoyle! Welcome to the community (nut house)...so sorry ya need to be here! Looks like everyone has covered all the basics for you but I'm gonna reiterate Chf's comments regarding oxygen.....the ONLY effective treatment for clusters that doesn't come with side effects (for most of us anyway) and is fairly inexpensive. As to your question regarding ONLY having one cycle your whole life.....impossible to speculate....the Beast manifests itself differently for each of us....what works for one doesn't for someone else....there is no "standard" cycle length or remission period (my cycles run from 12 to 20 weeks and I've had remissions as short as 9 months and as long as 2 1/2 years).....been dancin with the Beast for 32 years now! Read,read,read and ask questions.....there's only a few longtime active members here now a days but just between Bejeebers, Spiny, and myself you're drawing on close to 100 years combined experience doing battle with the beast,and Chf adds many years experience as the supporter of his clusterhead daughter! Dallas Denny

G'afternoon Adam Ryan Unless you have some underlying condition (copd)that contraindicates O2, your PCP is misinformed, full of chit, or both!! However, you needed a neurologist referral anyway for an MRI to rule out other nasty stuff and to get a firm dx! Dallas Denny

Hey Sierra! Good to see ya here but sorry the Beast has come knocking! Best of luck with the truffles! Dallas Denny