Kristy218 Posted January 3, 2017 Share Posted January 3, 2017 I've had a mix of Migraine, Tension, Cluster HA for over 10 years. Tried everything..a year ago started Sumatriptan 100mg. Now added Naratriptan for lesser attacks. Now added Sumatriptan 6mg auto injectors. I'm at the end of my hope here...I've been reading this forum, about O2. I've always felt this would help me at night, because it doesn't matter if I sleep 1 hour or 4 or 6, I wake up with a massive headache. Doctors won't listen to me...Botox has been tried 2x for spasms. Can anybody post links and info/advice for me, here? I have children and need to live long enough to fight this. I have Medicaid and Medicare which covers my shots, and Triptans..so far. Thank you for your help (forgive me if I've posted in the wrong area, I don't know much about forums) ♡♡-Kristy Quote Link to comment Share on other sites More sharing options...
Dallas Denny Posted January 3, 2017 Share Posted January 3, 2017 G'mornin Kristy and welcome to the community! You posted in exactly the right spot young lady! Unfortunately, Medicare's policy is to not pay for O2 as a treatment for CH! Many of us, like myself, buy our own welding oxygen rig as a work around....It cost me around $375 to get set up with a cylinder, regulator and the proper mask and refills cost $20. Dallas Denny Quote Link to comment Share on other sites More sharing options...
Kristy218 Posted January 3, 2017 Author Share Posted January 3, 2017 Thank You, Dallas Denny I will look into this O2 set up. I have access to welding supplies as my sons Dad is a Diesel Mechanic/Welder. Once I get through this current round of attacks (been 2 weeks so far) I will research this. I tried to go to the sleep clinic to get a machine, but my oxygen levels didn't fall low enough while sleeping to qualify. I tried lol. Possibly taking too much Sumatriptan too, I want to dose my 6MG shots into 2MG shots..like Ive read here. I've tried vitamin D, calcium channel blockers, melatonin, sleeping in my recliner, propped up in bed, maybe 20-30 other things as well. Going to a specialist at Mayo Clinic, Rochester Minnesota in February. Thanks for your reply. ♡♡-Kristy Quote Link to comment Share on other sites More sharing options...
Pebblesthecorgi Posted January 3, 2017 Share Posted January 3, 2017 Getting a proper diagnosis is important. Mayo can help with this but you still need a doctor near you to help get you the prescription items you might need. Important to find someone who will listen and help facilitate a treatment plan. You need to be educated and in control of clusters because no one but you understands. A physician partner will help once you find the right person. Developing an attack strategy for your situation is important so you don't scatter treatments when in the throws of a cycle. This site is great for getting valid, solid info. Bob's summary will be a great guide to give you an idea of the scope of treatments that have been helpful. Read it. Be sure to keep track of what you do and what works so you don'y tread over prior treatments and give treatments a proper chance by using good techniques (especially true of oxygen). There is an app one member has developed and can assist you in making record. Good luck Quote Link to comment Share on other sites More sharing options...
CHfather Posted January 3, 2017 Share Posted January 3, 2017 To set up a welding-based system, you need a regulator and a non-rebreather mask. You can get the highly-recommended regulator here -- http://www.harborfreight.com/catalogsearch/result?q=oxygen+regulator(there is also probably a Harbor Freight store near you) -- and the mask here: https://www.amazon.com/MEDSOURCE-No-Model-Non-Rebreather-Oxygen/dp/B00BBFQ64M/ref=sr_1_2_a_it?ie=UTF8&qid=1483476376&sr=8-2&keywords=non-rebreather+mask You can get both of them in a couple of days with fast delivery, and if you can get a tank through that relative, you're in business. Very hard for me to think of any reason to wait. Having taken D3 is not the same as having done the full D3 regimen: https://clusterbusters.org/forums/topic/1308-d3-regimen/ Check your life for triggers: https://clusterbusters.org/forums/topic/4568-triggers/ You don't seem to be taking a pharmaceutical preventive. Verapamil is the most commonly prescribed one for CH and migraine. People with CH often find that in cycle they need pretty high doses -- higher than what they have taken before, up in the 900mg levels -- before it actually works. Melatonin at night, starting at 9mg and working up as needed, helps many with nighttime attacks. Busting, described in the numbered files over here -- https://clusterbusters.org/forums/forum/6-clusterbuster-files/-- might be your best current hope for treating CH AND migraine long-term. I agree with Pebbles about what Mayo can and can't do for you. They might have some other pharma stuff for you to try (octreotide or something), but pharmaceutically they have no secret answers, and you're not close to being a candidate for more drastic treatments. Quote Link to comment Share on other sites More sharing options...
Kristy218 Posted January 3, 2017 Author Share Posted January 3, 2017 Thank you Pebbles, for your feedback. I live 40 minutes from Mayo Clinic, Rochester. They actually have a Mayo Clinic in my town-(Albert Lea, MN). But the Mayo Clinic in my town is just a branch of Big Mayo Clinic..I have a neurologist and other specialists in Internal Medicine I'm working with too. They are not very motivated to figure the problem out, thrilled my New Permanent doctor will be at Big Mayo Clinic..in neurology still. Thanks for directing me to Bob's Summary, I will read it tonight. Also the app to keep record of what I'm doing, is a great idea. It's been long overdue that I make this record. Thank you Quote Link to comment Share on other sites More sharing options...
Kristy218 Posted January 3, 2017 Author Share Posted January 3, 2017 CHFather, Thanks for the links/feedback. I will look up the mask and regulator, I agree, no reason to wait. I definitely need to read about how they are used, so I know what to do. I actually used Verapamil for 4 months, it didn't help. Im gonna check and see what dose I was on, I wonder if it was anywhere near 900mg. I dont think I was on that much. Only meds that worked in the past 10 years, is Inderal(propranolol is the generic, had to discontinue because of swelling and water retention..I went from 125# to 160# in gained water weight) and Triptans work but only for that day..it always comes back. A list of maybe HALF the meds I've taken are: Raglan, Topamax, Verapamil, Effexor, Gabapentin, Inderal, Torradol, DHE slow drip, and numerous strong narcotics to include Kadian and Fentynal,Dilaudid. I have horrible insomnia, melatonin never helped me, neither do other prescription sleep meds. Thats ok though because I eventually sleep. I ABSOLUTELY WILL try Melatonin again once I get this O2 started. I'm always willing to try again. I will read your links tonight, and start my notes. Thank you for directing me thru the links ♡♡-Kristy Quote Link to comment Share on other sites More sharing options...
CHfather Posted January 3, 2017 Share Posted January 3, 2017 Here's some info about how O2 is used. https://clusterbusters.org/oxygen-information/ But ask questions. Many experts here, and some new strategies not mentioned in there. It could make a very big difference in your life. There is a better mask, designed specifically for CH: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit With verapamil, you have to start at a lower dose and work up, with monitoring of its cardio effects. Sometimes a course of steroids is used to try to address the pain while the verapamil has a chance to take effect. The thing about melatonin is that people with CH have low levels of it, so this is thought of as a kind of "replacement therapy," I guess. More than just to help you sleep. Some people get into the upper-20-mg levels before getting real relief. We didn't mention energy shots (such as 5-Hour Energy). For a lot of people, quickly drinking one at the first sign of an attack will reduce the severity of, or sometimes even abort, an attack. Strong cup of coffee works for some. Triptans are only meant to be abortives, not preventives, so your experience of them only dealing with the attack at hand is consistent. Some people are convinced that triptan use causes rebound headaches and extends cycles. A crappy tradeoff to have to make. That's why getting O2 working right as your abortive is so important. I hope you are now splitting your injections. Quote Link to comment Share on other sites More sharing options...
john2000 Posted January 5, 2017 Share Posted January 5, 2017 Triptans work but only for that day..it always comes back. I try to avoid triptans as much as I can . For me triptans help for about 4-8h , but a new CH will come with even more intensity . This year I took triptans only about 10 times. I take triptans only when the pain is unberable and I 'm almost vomiting from pain and discomfort, but I regret it as soon as I take it, becasuse the next CH in 4-8 h will be even worse , and that one can't be aborted with triptans. I do O2 and vitamin D regiment as well. I also have insomnia , but I've been taking herbal suplmetn before sleep : Naturemade Sleep . 1-2 capluses. It is not addictive , and has been working for be with the same effectiveness for more then 5 yers. Start with 1 capsule. 2 capsules only when I am wide awake not feeling tired at all. Also I take theamine and chelated mg before going to bed. I read somewhere that it helps with sleep and it seems to work. Regarding E-drinks,,, I found that just about anything works, even a cheap $1.5 non brand E-drink works fine. No need for redbull or 5h energy. When in cycle up to 15mg of melatonin before going to bed, reduced my night CH significantly. What is astonishing to me that all the info that really helped me came from this forum's wonderful contributors and not a neurologist. If there was no internet and people who really give a damn , i'd be probably dead by now. 1 Quote Link to comment Share on other sites More sharing options...
MoxieGirl Posted January 7, 2017 Share Posted January 7, 2017 Hey Kristy, I have been diagnosed with Chronic Daily Headaches, Chronic Migraines and Chronic Cluster Headaches. I routinely have between 30 and 65 headaches (of one type or the other) a month. Some years it is headaches, some years migraines, and other clusters that seem to be the dominate one. Right now, it's migraines. Virtually every morning, 4 or 5 am, a force 10 migraine wakes me up. I've found the best migraine abortive to be Anadin + Eletriptan. Not sure if you have Anadin in the States, basically paracetamol + caffeine My worst year, the year they started, my headache lasted for 7 months and was punctuated with frequent migraines that lasted for days and severe cluster headaches. In 2010 I was getting up to 5 cluster attacks a day every 2-3 days, and that's when I turned to this forum. The remedies found here reduced my clusters from several a day to a few a month, and those are so mild I barely notice them any more. In 2010 I had something like 65 migraines (if memory serves). In 2011 I had 3. Yep, 3. A 95% reduction in migraines. I've had a few bad crops of my home grown medicine this year, and thus the worst of the headaches are back. But I had started micro-dosing on a daily basis. This means taking a really small dose, so small there is virtually no tripping involved at all. The psilocybin builds up in the body over time and is totally amazing. My advice. Hang in there, don't give up hope. The doctors don't know everything, do your own research. Find out what works for your body, trust yourself. I don't get onto the forum as much as i used to, but feel free to ask me anything. Will do my best to help. hugs MG Quote Link to comment Share on other sites More sharing options...
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