CHfather

Occipital nerve stimulation improves the quality of life in medically-intractable chronic cluster headache: Results of an observational prospective study; Fontaine D, Blond S, Lucas C, Regis J, Donnet A, Derrey S, Guegan-Massardier E, Jarraya B, Dang-Vu B, Bourdain F, Valade D, Roos C, Creach C, Chabardes S, Giraud P, Voirin J, Bloch J, Rocca A, Colnat-Coulbois S, Caire F, Roger C, Romettino S, Lanteri-Minet M; Cephalalgia (Oct 2016)BACKGROUND Occipital nerve stimulation (ONS) has been proposed to treat chronic medically-intractable cluster headache (iCCH) in small series of cases without evaluation of its functional and emotional impacts. METHODS We report the multidimensional outcome of a large observational study of iCCH patients, treated by ONS within a nationwide multidisciplinary network (https://clinicaltrials.gov NCT01842763), with a one-year follow-up. Prospective evaluation was performed before surgery, then three and 12 months after. RESULTS One year after ONS, the attack frequency per week was decreased>30% in 64% and>50% in 59% of the 44 patients. Mean (Standard Deviation) weekly attack frequency decreased from 21.5 (16.3) to 10.7 (13.8) (p = 0.0002). About 70% of the patients responded to ONS, 47.8% being excellent responders. Prophylactic treatments could be decreased in 40% of patients. Functional (HIT-6 and MIDAS scales) and emotional (HAD scale) impacts were significantly improved, as well as the health-related quality of life (EQ-5D). The mean (SD) EQ-5D visual analogic scale score increased from 35.2 (23.6) to 51.9 (25.7) (p = 0.0037). Surgical minor complications were observed in 33% of the patients. CONCLUSION ONS significantly reduced the attack frequency per week, as well as the functional and emotional headache impacts in iCCH patients, and dramatically improved the health-related quality of life of responders.

I'm surprised you have a neuro with 12 CH patients. That's a lot. 2000mg of magnesium seems like a lot, too, but maybe that's based on his experience. I would say your list of items should be 1. OXYGEN (this is also #2 and #3) 4 and 5. Probably a tie between a preventive and Imitrex that works (preferably injections but maybe nasal spray would work). Verapamil is the most commonly prescribed preventive. It should be monitored for its effects on your heart and blood pressure. I think it is usually started at fairly low (and therefore fairly ineffective) dosages and raised depending on tolerance. You might start at 160-240mg/day, but it can take 900-plus mg/day to be effective in cycle. As Pebbles said, the standard 6mg Imitrex injector is more than anyone with CH needs. If your doc won't prescribe vials and syringes or 3mg injectors, you can disassemble the 6mg autoinjector and use 2mg per injection, or maybe 3. We can point you to how to do that if it comes to that. 6. Blood test for your vitamin D level. This is part of a basic blood panel. As Denny says, as you get your D levels up and use the whole D3 regimen, it can replace verapamil as your preventive. If you discuss the D3 regimen with your doctor, he might be troubled by the high amounts of D3 that it involves. Batch, who observes the D3 regimen closely, has seen no issues with D3 at these levels if it is properly taken as part of the whole regimen and D levels are consistently monitored. Right now, you are looking to get the basics in place. Don't ignore that energy shot suggestion. It can help with clearing shadows, too, and another thing that clears shadows for some people is ginger tea.

Mass General didn't give you oxygen??? It's the thing you want most. https://clusterbusters.org/oxygen-information/ The 50 mg Imitrex is pills??? Practically useless. Injections most effective; nasal spray next. Naproxen also useless. You don't have a preventive, unless someone's thinking the trazodone might serve that purpose. Verapamil is the most commonly prescribed one. One of the great medical friends of people with CH is a neurologist in Boston. If you're not getting what you need, he's the man to see. We'll give you the info if you need it. Please look at the recommended D3 regimen that I linked you to and consider following that. I don't know what you're taking that might be contraindicated for CH meds or the alternatives we'll suggest here-- you need a doctor or a reliable pharmacist for that. Many people find that quickly drinking an energy shot such as 5-Hour Energy at the first sign of an attack can reduce the severity of an attack, or even abort one. Many people like them very cold. Melatonin at night helps a lot of people: 9mg to start, and then work up if needed. There's a list of triggers here. https://clusterbusters.org/forums/topic/4568-triggers/ Pot is unhelpful for some people. I haven't heard of cold wind as a trigger before, but why not? Cold wind is definitely a trigeminal neuralgia trigger. I guess you can tell -- I don't think you've received very good advice or help so far. The article here by Goadsby is a good, simple summary of medical CH treatments: https://clusterbusters.org/medical-research-reports-studies-case-reports-links/ PS: I'd consider changing you screen name, if it's your email address. Changing it now will change it on all your previous posts.

john', do you have a first-rate O2 setup -- high-flow regulator and "clusterO2 kit" mask (formerly the O2ptimask)?

Blood pressure meds -- particularly calcium channel blockers such as verapamil -- are also used as CH preventives. For general prevention, you should be trying the D3 regimen: https://clusterbusters.org/forums/topic/1308-d3-regimen/ Of course, I'm sure you know not to use the strap to hold the mask on your face. Just hold it, so it falls off it you do fall asleep.

Your fears and feelings are not unusual, Jle'. It's amazing how often people with CH blame themselves for having the conditions, and feel that they have somehow "failed." To me, people dealing with CH are heroes, not failures. But most importantly, you are just starting on the path to finding ways to manage your CH, and there are many, many things out there that will help you with that. Would you tell us what you are doing now for your CH? If you are not doing the "vitamin D3" regimen, that's an excellent place to start: https://clusterbusters.org/forums/topic/1308-d3-regimen/ From what I have observed, the other treatment strategy that has produced the best long-term results in terms of stopping cycles and preventing future ones is "busting," which is the reason this site was created. Busting is using psychedelic substances, often, with some of those substances, at dosages that have no psychedelic effects. You can read about busting in the numbered files in the ClusterBuster Files section at this board, and you also should also read this to give you a sense of the many current and hopefully future possibilities: https://clusterbusters.org/forums/topic/4567-bobs-big-pocket-guide-to-cluster-headaches/

Melatonin at bedtime, starting at about 9mg and perhaps working up as needed, helps a lot of people. Some find that sleeping in a more upright position helps, such as in a recliner or even sitting up at a table with pillows under the head. Are you staying on the oxygen for some minutes, maybe 5-10 minutes, after you have aborted the attack? That can help prevent or delay subsequent attacks.

luz', if you are sent to the main page of the general board, you will see on the right side a large black bar with white writing that says "Start New Topic." Click on that, create a Topic Title, type your questions into the big box below, and then click on Post New Topic at the bottom of the page. Tell us as much as you can about your situation (for example, what medications you are taking; whether you are chronic or episodic; etc.). That will help us try to give you good answers.

You have the info you need to get what will help you. If you can't see a helpful doc right away, try a walk-in clinic. If you have options, call around to walk-in clinics and ask whether they will prescribe Imitrex or oxygen for cluster headaches. If you have some documentation of your CH diagnosis, bring that with you. I suspect most will prescribe the trex, but some might also prescribe oxygen. In the short run, try the energy shots (most people prefer them very cold). Other making-do strategies you can start now that help some people include putting your feet in very hot water, as hot as you can stand, in a bathtub; deeply inhaling air from your freezer or an air conditioner or outside if it's cold where you are; exercising vigorously; and taking melatonin at night, starting at about 9mg and working up as needed.

Steroids are generally prescribed as a "bridge" medication to try to control the pain while a preventive, usually verapamil, takes effect. Usually, if the steroids do treat the pain, it returns again after the course is over. I don't know the specifics of the Medrol pack to be able to say whether it is the right prescription or not, and I don't know why you would have that prescription without also an increase in your verapamil dosage, which might need to go much higher while you are in cycle. The pressure change related to flying induces attacks in many people. Whether that will start a cycle or not, I really can't say. But you really, really want to have some abortive, if the steroids don't work or if the attacks return after the steroids. Oxygen, as we have said, is the safest abortive. Injectable Imitrex is also usually very effective, but with more side effects and longer-term consequences. In the short run, try an energy shot such as 5-Hour Energy at the first sign of an attack. It can sometimes abort it, or at least reduce the pain. But please ask firmly for oxygen and/or Imitrex.

nomore', just a possible clarification: be sure to look at that page about splitting trex injections that I provided a link for. Or, if your doctor is supportive, ask for either 3mg injectors or vials of Imitrex and syringes. It is extremely likely that you don't need more than 3 mg, and quite possibly 2, to stop an attack. 6mg is the standard CH prescription, because . . . well, because why sell less when you can sell more.

I don't think anyone can tell you what signals the end of a cycle. For some, it's having the worst attacks, and for some it's a gradual weakening. Fingers crossed for you. You can and should be splitting your Imitrex injections. Read how to do that here: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ You should have oxygen. Good Lord, I am so tired of having to write this over and over. It's the #1 medically recommended abortive, and it won't poison you like Imitrex. More info: https://clusterbusters.org/oxygen-information/ Your verapamil dose is low, but maybe you have a sane doctor who wants to carefully track how it affects you. (Or maybe you have an idiot doctor who has no idea what s/he's doing. Who knows?) Some people don't get relief from verap until the 900ish range, at the high end, though for others it can be lower. I think it's pretty rare to get results at less than 360. It's highly unlikely that aspirin with codeine is helping. If it feels good to take it to be taking something, go ahead. Also, some studies and some experience have shown that Imitrex can sometimes cause rebound headaches or extend cycles. Another reason to (a) use O2 and (2) split your injections. You also want, in my opinion, to be doing the vitamin D3 regimen: https://clusterbusters.org/forums/topic/1308-d3-regimen/ And you should read about and know about busting, which is the reason this site exists. Look in the ClusterBuster Files section, the numbered files. Have you tried an energy shot (5-Hour Energy, for example) at the first sign of an attack, or when you get woken up by one? It can stop an attack or make it a lot less bad. Most people, or at least many people, can get back to sleep after taking an energy shot to treat CH.

Your doctor, unless he or she is very very committed to treating CH, won't know anything about the D3 regimen. And if s/he sees the amounts of D3 involved, s/he will probably say that it's way too much. Testing of vitamin D levels is part of any standard blood test. I'd bet ten to one that yours is low. I'd recommend that you ask your doctor for a blood test, discuss the D3 regimen with him/her if you want, but keep an open mind, read the information, consider what the members here have to say. I didn't give you a link to the D3 regimen the other day because it had mysteriously been moved and I couldn't find it. Here it is: https://clusterbusters.org/forums/topic/1308-d3-regimen/ The thing you want most from your doctor is oxygen. Most non-neurologists don't even know about O2, even though it is the #1 medically recommended treatment for CH -- effective and no side effects! You can find info about oxygen here: https://clusterbusters.org/oxygen-information/ Sadly, I would be willing to bet, maybe not at the 10-to-1 odds I was offering regarding your D level but at least at 5-to-1, that your doc won't prescribe it, and will give you some BS reason why not. (The real reason that most docs don't prescribe it, in my opinion, is that they're afraid: they don't have any patients who need O2 at this level so they have no experience with it, and most don't even know how to write a prescription for O2 for CH.) Maybe your doc will prescribe Imitrex; maybe it will be the injectable kind (not pills, which don't work at all; or nasal spray, which sometimes works). That's an easy prescription to write -- and it does stop your attacks. But it's bad for you, and you can't take too much of it, and it's EXPENSIVE. Yep -- drinking is far and away the #1 trigger. It's great that you can get so much relief "just" by stopping. Please be sure to check back. We're just dealing with the basics right now, but there is more that will be helpful once we see where things settle.

Again, thanks to all. Something called Theraspecs has been recommended for her (they get good reviews from migraineurs, at least insofar as online reviews can be trusted). We'll probably get a pair and see what happens.

Thanks, you two. No, J, no mood-related meds.

I mentioned in an earlier post that my daughter was finding herself to be highly sensitive to natural light. She has found that if she stays away from sunlight (a miserable enough way to live, on top of having cluster attacks) she is practically painfree (we recently thought her cycle was nearly over), but if she sleeps in her bedroom where some natural light comes in she gets hit not long after waking up, and if she goes outside in daylight she gets bad attacks within an hour or two. Multiple attacks. We have checked carefully for other possible triggers and just don't see any. She has a couple of good days, goes outside in the afternoon to walk her dog, and wham gets hits that are sometimes resistant to O2 and energy shots, which usually work for her. Have others experienced this? Any suggested explanations? I realize it might be time to see a neurologist, but aside from the very long wait to get to see one, not being able to go outside in daylight severely limits her options.

Grumpy', just checking: Do you have oxygen? Or any kind of abortive, from energy drinks, which help many people, to injectable (or nasal) sumatriptan? Are you doing the D3 regimen? If you are only using verapamil right now, you're in a good position for busting, if that's something you would want to do. Read about it in the numbered items in the ClusterBuster Files section.

Thanks, spiny.

>>>spiny said: I could only take 240mg because my resting BP was 80/60 at night.<<< spiny, do you mean that your BP was "normally" 80/60 (before you took the verap), or that the verap lowered it to 80/60? I ask because my daughter's normal BP is about 80/60, and she has been told that therefore she can't take verap.

>>>Pebblesthecorgi, on 06 Dec 2016 - 9:14 PM, said: Airgas is basically a distributor and generally doesn't do "retail" on medical gases.<<< Thank you for this clarification! We get our welding O2 from their industrial outlets, and the Airgas medical facility is practically next door, so I had imagined one could get medical O2 there. And thank you for the overall smart and helpful post above.

It's probably worth mentioning that there are at least a couple of folks who once were very active members here who have gone from chronic to painfree (painfree for several years, at least) from various forms of busting.

I'm not an expert, and this is mystifying to me -- how can you be "the public" they can't sell to if you have a prescription? Our great moderator, ThatHurtsMyHead, lives in Florida. He'll probably see this and have some helpful information if it's a state law issue. You can PM him from here: https://clusterbusters.org/forums/user/20384-thathurtsmyhead/

I'm not in Central Florida, but have you tried Airgas? Big national company that seems like it should have big tanks. Airgas Healthcare South Region - Orlando: Silver Star Rd 3100 Silver Star Rd Orlando, FL 32808 3.91 miles Get Directions (407) 293-6630

You could try water soaking and an orange juice chaser.

Orange juice is fine.