spiny

Thank you Fun T. Be safe. That O2 is a real miracle, isn't it?

I wonder why it would be suggested that you use a Triptan without using Verapamil as a preventative? Your doctor has recommended this without providing you with a preventative like Verap? Nor has he/she offered a taper pack of prednisone? Hmmmm. I don't think that I would trust that either. O2 should be your best friend! Please check out the D3 Regimen in the Clusterbuster Files section. Just vitamins. No drugs. Hard to say 'No' to that. Lowers the intensity and slows the ramp up for me and many others. Some actually go PF on it! No doctor required either and no icky medicine feeling. I can imagine feeling like 'king of the mountain' after an attack is over. Sort of like you just conquered the world. I had that feeling of success when I was just having one hit a day. After that, not so much. CHF gave you some great advice above. Check it out!

Good to see that you are better! The Verap you are taking is a low dose. It may need to be bumped up as you go. I can only take 240mg per day, but that is because of low blood pressure. If your BP is normal with your current dose, you might speak to your doctor about increasing it some in a week or so. There are CHer's who take about 960mg a day!!! Way more than is given to 'regular' patients. Just keep an eye on your BP. I hope that your doctor has scheduled a return visit soon to evaluate your progress! I would take my Verap at the times I was prone to getting hit. It seemed to work better that way. For me that meant afternoon, evening and midnight or when I got up at night. It sound like the method you are using is working for you but you can tweak it a bit to meet your needs. Just don't bunch them up. All the best Jimmy and please stay in touch.

I was given it about two years ago when I got hit waiting for surgery. Worked great. Killed the hit right quick and then I was off to surgery. Post surgery - no issues. Best of luck!

No sweat jimmys. All fixed.

Fun times, Like I said, participating in that study makes you one of our heros. We are more than thrilled that the Psilocybin Trials are actually happening now. It took a lot of hard work by a lot of people to get that ball rolling. Our Founder, Bob Wold being one of them pushing and working to make it happen. I would definitely check on the D3. Like you said, it should not be prohibited during the trials. Fingers crossed as I don't know that for a fact. I forgot about the hot water and I use it myself!!! Some have taken an ice cube and hold it on the roof of their mouth, as far back as you can on the CH side. Others have stuck their nose up to the AC vent in the car with it running full blast too. Both methods have helped people if used the right away. But the Energy Shot or caffeine has a better track record I think. Yes, Your wife is a saint. It is very hard on her I am sure. I know that it is hard on my husband. Their hands are tied and they just want to throttle something to make it stop for you. I have yet to find an ER that has been helpful. The last time I went, my Neuro was waiting for a call from them to give them instructions. The ER doctor informed me that while at the ER, I was HIS patient and proceeded to run a blood test for a stroke. I also walked out. My Neuro was furious. i was ballistic on top of the longest CH ever in my world. Too bad anger can't kill a hit!!! And, I got a bill too. I really look forward to you getting your cluster mask! You will be amazed at how well it works with the proper setup and breathing technique. Keep reading and asking questions!!

First I would like to thank you for signing up for a trial! Some who have tried to do one are already aged out of the parameters being set. Others just cannot do it. Those who do are thought of as Hero's by most of us. Me included! Family: It is really hard on them. There isn't a lot that they can do to help except give you space, but I do have a couple of ideas. Some CHer's like a cool wash cloth during or after a hit. If you grab some caffeine on your way to the O2 to slam down, which is a really good idea BTW, perhaps someone can grab it and bring it to you. Even being able to do the smallest job to help you will please them. Let them know that you really appreciate their desire to help, but perhaps that you would like some help after the hit is over. Glass of water, washcloth, etc. Maybe let the kids know that you would love it if they could continue with whatever they were already doing while you are killing the pain? And likely you can let your wife know that kids noises do not add to your pain so she does not worry about keeping them quiet. But you need a place to be alone while you kill the hit. Maybe that will give you a start. I think that most of us try to hide our pain from our families. We don't want them to know. Later, we find out that they would have been a lot better off if we had explained it to them. If you can employ their help at some point they will be happier and so will you. Side note: I have a cat who is my O2 buddy. He always follows me to the O2 unless the dog gets in his way. He lies on the floor, not wanting pets or attention, just about a foot away to keep me company. It is nice to have him there to pet when I am doing my post hit breathing and no longer in pain. It is great that you are getting your O2 set up properly. The CH mask is the best!!! Just make sure that you have a good seal to keep out ambient air. Or use the breathing tube instead of the mask. Many find that the best way. I can't tolerate the pressure on my face, so I only use the tube. You may find that you need a 'barb' to make the connection of the tubing to the tank. It has a screw on one end to screw into the regulator and a stepped up post on the other is the barb that you push the tubing onto. Just do not use any oil or grease on any connection! That may require a trip to Lowes or an auto parts store. Just make sure that the threads are the correct number and pitch. I would take the regulator with me to get the part. Or the guy you ordered the mask from may still carry them. He supplied mine years ago. I suggest that you read the O2 file in the Clusterbuster Files setcion of the board. Proper use is paramount! Have you been able to read up on aids like caffeine? Taken at the very beginning of a hit they can reduce your pain and abort time. Many use Energy shots, Energy drinks, or coffee (hot or cold as you desire). They also can work to kill shadows too. I don't know that Motrin helps, but the Trex injections do. You are limited to two in 24 hours though. Pills are too slow for CHers and are best given to Migrainers. The nasal spray is in the middle. Unfortunately they can increase the number of hits and also extend a cycle too. In addition, insurance will normally cover only 9- 12 injections per month.So, that kind of leaves you hanging for many of the hits. Injections can be split into three doses though and still be effective. So that does help. I would strongly suggest that you read up on the D3 Regimen in the Clusterbuster Files board. It is just vitamins and works as an anti-inflammatory. Very easy to do and just requires a trip to Walmart or the drug store. It can reduce the severity of your hits and slow the ramp up time down. Both are good things. Some have gone PF on that alone!! What does of Verapamil are you taking? Three times per day sounds like the short acting variety which is what you want. CHers can need very high doses - up to 900mg or a bit more. You will need to make sure that your Blood Pressure is in a safe range as Verap is a blood Pressure reducing med. All to often the dose prescribed is too low to help. Keep reading and ask questions.

Jimmy, Please try caffeine on the way to your O2. Use an Energy Shot, Energy drink, or even coffee. It really does help. Giving up caffeine is not likely to positively impact your CH. At least try it for your daytime hits. Most of us take it at night and return to sleep very easily. Not all, but most. I have been gluten free for over two years now with no impact on my CH.I would be more concerned with known triggers like alcohol, MSG, fermented foods and such. Major changes like eliminating gluten and dairy can be stressful in their own right. Nine pills a month is a very common restriction on Imitrex pills and other meds in that category. O2: Using O2 properly is work. Forceful exhale is necessary. Post hit breathing is very important. Make it your first go to with a hit and get on it right away! Down the caffeine on your way!! Yes, some Migrainers have found that CBD helps. I have not known of any CHers who got relief from it. Migrainers get relief from lying down in a dark quiet place too! CHers do not.

Welcome Kay, We think so very much of our supporters!! They truly are hero's. It is a very tough job. The Trex (sumatriptan) shots are the fastest working med that is prescribed.However, it does carry it's drawbacks. Usually patients are only prescribed 9 12 per month, which does not cover all the hits a CHer will have in a month. There is a way that they can be split into 2 or 3 doses and that is a big help. Now, bear in mind that trex is hard on the heart and can cause issues if over used. When they prescribe it, it appears that they are thinking migraine = 5-10 hits a month. As you know CH can be 5-10 hits a day!! Oxygen is the number one abortive out there. It must be used with a non-rebreather mask with a flow rate of at least 15lpm. Many need 25lpm at times. The most important thing to know is that he must exhale fully and hard, then inhale deeply, hold for a few seconds and then repeat. AND stay on the O2 breathing at a normal rate for about 5 minutes after the pain is gone. This way he will get an hour or more of PF (pain free) time between hits. Just breathing in and out will not do the trick. He needs to get all the CO2 out of his system. Ergo, the deep forceful exhale. The bag on his mask should re-fill while he is holding and exhaling so there is no delay getting another breath. Some people prefer the breathing tube over a mask due to face pain. And never strap the mask on in case he falls asleep and all his O2 gets wasted. There is mask available from our sister site for about 30.00 that is the best. The main reason that O2 fails for some patients is they do not receive proper instruction on how to use it. Initially he may be hyperventilating due to the pain, so just continue that until relief begins! Many, if not most of us have had to teach our Neuro's how O2 should be used!! Is he on a preventative like Verapamil? That is the most commonly prescribed and successful preventative out there. Cher's normally require very high doses. Say about 900mg a day. It is started at lower doses and increased over time. Blood Pressure needs to be monitored, as Verap will lower it. Often a 'bridging' med like Prednisone is given for about a week to help calm the CH while the Verap is building up. Pred is not to be taken long term. It can destroy his hips and even shoulders. So, minimal use to get something else working. It works so fast at the beginning It seems to be an angel. But that angel can really hurt him in the long run. If you look at the top of the main page, you will see about 6 listings for the forum. General, Share Your Busting Stories, Theory and Implementation, etc. The one that you want is the Clusterbuster Files. Start reading there. It has a great file on O2 use. Read it. Get him to read a printout too if possible. It also covers a lot of other stuff. Also in that file you will find a topic called the D3 Regimen. Just regular vitamins you can buy anywhere. It is for inflammation and has proven to be a big help for many of us. Lowers the intensity of the hits and slows the ramp -up time to give him a bigger window to hit the other stuff. Some have gotten PF just from that routine!! I strongly suggest that he try it for at least a month! Busting is a procedure he may want to try at a later date. The materials used are not tested for with a standard 'drug' test. And they clear out of your system in hours. They are generally looking for opioids and pot, not LSA seeds or Magic Mushrooms. Both will clear out of his system in a matter of no more than three days. There are ways to mitigate a hit or prevent it with common Energy drinks or Energy Shots. Even coffee is a huge help. Slam it down at the first sign of a hit. Most people like it really cold and use the shots because they are small and easy to transport. I use strong coffee kept in the fridge in the summer months. He should grab one on his way to the O2. He can take Melatonin (9-25mg) at night. That helps many. I take caffeine pills every day at 5pm for night time hits. Got sick of coffee and Energy Shots make me sick. Most of us find that the caffeine does not keep us up at night either. Weird, but true. Some people put an ice cube on the soft palate of the CH side and hold it there for relief. This is just a start. More info will provided by members as they read your thread. Thanks for being a great supporter!!! ATB spiny

A few 'home' aids: Sleep in a recliner with your head above your heart. Stuff pillows around to get comfy. Helps with night time hits. Stick your feet or yourself in water as hot as you can take. Then heat it up some more when you adjust to the heat. Put something cool on your head/neck. You are opening the blood vessels in your lower body and constricting those in your head. Put an ice cube on the soft palate area on the same side as your CH and hold it there for a bit. No ice? Some will massage the gums up there to get relief. Deep breathing with forceful exhale. Get rid of as much CO2 as possible. Inhale as much air as possible. Like a breathing test, Do a crunch at the end of your exhale. Not perfect, but it can actually help. Especially when combined with caffeine. Breath really cold air. From the freezer or the AC in your car. Stick your nose up to the vent and inhale. Ginger: As candy or raw root. It is hot!!! Take at the first indication of a hit. Try the Melatonin. Up to say 25mgs. Take before bed. In cycle your levels can be too low. I will try to think of some more in a bit. Don't worry about the reading. If you can't, you can't. The day will come when you can catch up on a lot of it. Verapamil: It often takes a very high dose to be effective. From 360 (low) to about 900mgs/day. If you are taking say 240, you might not get any relief. Just monitor your blood pressure as you up the dose. It will drop it. Your doc can prescribe a taper pack of Prednisone. Long term, this med is dangerous to your joints, but a quick taper can be a huge help. Fingers crossed that the seeds get you on the road to PF status!!!

Beer is a big trigger for many of us as well Taq. In cycle, most will forego the alcohol once they make the connection. Caffeine in any form can be a big help. OTC meds generally do not help. The D3 Regimen can be a huge help!!! Just vitamins and easy. Reduce the frequency and intensity of your hits and can kick in pretty darn quick for many. Pollen high in your area? And barometric drops trigger many CHer's. Heat can be a trigger as well as the alcohol. So, stay cool!! You definitely need to see a Neuro about this. They know more than most PCP's. There are meds than can break a cycle for you. ATB!

Welcome Rose! Pred is a wonder drug with some bad side effects. Long term usage is not a really good thing. I totally understand your taking it if it works, but I wonder why your doctor has not given you life saving O2 or a course of Verapamil. It is the most common effective drug prescribed. Cher's usually can tolerate pretty high doses. Pred is mostly used as a 'bridging' medication to take till the Verapamil kicks in. Like about one or two weeks of Pred and then it is dropped. Good to read that you know how to split your injections!!! I am not sure why you are having aches and pains, but Pred can destroy your hips by ruining the joint. This has caused many to need hip replacement surgery!!! If you have taken a lot over the years perhaps this is part of the problem? I can also destroy your shoulders. Are you being treated by a Neuro? He should know better. And he should give you O2 to kill any hits!!! It is the safest treatment and a primary go to for us. A PCP likely would not be up on the best treatments for CH. And when you find something that works, that is what you want and trust. Years ago they did not know about the severe long term damage it can cause. So, if you have been using it for that long, you might want to look in that direction. How long do your cycles last? ATB! spiny

Hey Jimmy! That knot on your neck is actually very common. We often refer to it as the 'Cluster Knot'. I have had a really great masseuse work on mine to no avail. Was not going away. Neck pain became a common precursor to a hit for me. I finally started sleeping on the edge of my pillow to prevent aggravating it. When that cycle was over, it vanished as well. But, I still start out my night on the edge of the pillow. Old remedies die hard!!! MSG and alcohol are both very well known triggers. Falling barometric pressure sucks too. Paint fumes and perfume affect some CHer's too. You will find your triggers as you go, trust me. I have had about three sips of a beer send me into bad places right quick! Like look at the bottle and think " Not possible!' Ohhhh yes it is. Like Jeebs, mine were 20 minute guys when they started many years ago. They have settled into a 2.25 hour rhythm for the last several years, so I guess they plan to stay in that range if untreated. Caffeine is a major go to treatment for most of us. As an Energy Drink or Shot or even just coffee. Taken at the very beginning of a hit any will really help mitigate the attack. I finally got so sick of all of them, I bought caffeine capsules to keep with me. I can just open and take the powder with a chaser of water. For a while, I carried just the powder in a small container at all times. Then it dawned on me that the Peace Officers might question a white powder in my purse or pocket! Ergo, the caps.

Neurologists have extensive knowledge of these structures. I find it hard to believe that you made such an ignorant statement. I have a friend who came to your clinic several years ago for treatment. She did not have a little numbness. She had to take all food thru a straw for months following your procedure. You did not or could not correct it. I am not at all sure that you respond to failed treatments or acknowledge the misery some of your patients have had following their visit to your clinic. None of which qualify you to treat this condition. But all of which study the Trigeminal Nerve to some extent. Bandaids are not a 'cure' for disease. They just prevent pain by covering the area and protecting it for a short term. You are handing out expensive 'bandaids' and sometimes put them in the wrong location to boot. I would like to see a paper with about 5 years of follow-up on your patients. That would eliminate some of your 'many' successes. And more sanitary working conditions that do not leave patients with infections are definitely needed at your clinic. That is unconscionable. For any Physician. As a side note, I had an attack while awaiting surgery. The Physician had the pre-surgery injection given early and my attack completely vanished. I did not walk out and say that hernia surgery cured my CH. I said that the shot killed a hit. If this method is so successful and your concern for our pain so high, why have you not trained other doctors in your procedure? Perhaps they are not beating a path to your door. For good reason?

Hey John! You really should try the method that Batch suggested above. Starting it as soon as the hit begins with room air is great for me. Another thing that works well is to quickly down an energy shot or drink. I use coffee, just keep some in the fridge if you don't have a pot going all day. Are you staying on the O2 for about 5 minutes after the pain is gone? You dial the flow back and breath normally for about 5 minutes after the pain is gone helps prevent that immediate return of a CH. Sorry to read about your allergies/problems with the D3. The filler that I have learned to avoid is gluten - wheat! I have become sensitive or allergic to it in the past few years. You can read the label to see if it contains wheat and pick another brand. Gel caps do not contain wheat in my experience.

I have always used the mouthpiece. Easier for me and nothing touching my face, which hurts! Go with what works by all means Archimedes.

O2: The specialist is correct. A cannula does not supply pure O2 which is what you want. If you go to the main page, open the Clusterbuster Files, and look for the thread on O2 and open. It will give you some great info on how to use it properly. You want a minimum of 15LPM and a non rebreather mask or brathing tube. No outside air at all. Exhale fully - hard. Inhale deeply, hold for several seconds and exhale with force. Repeat. You want to stay on the O2 for about 5 minutes after the pain is gone, lower the flow rate and breath normally. This prevents the quick return of the hit. The bag on the mask should fill during your hold and exhale so that you have plenty for the next inhale. O2 is a life saver when used properly. While you are there, read the D3 file too. Just vitamins and very helpful for many of us.While I did not get to PF status on it, it slows my ramp up down and lowers the intensity of my hits. All good for you stuff, no script required. Have you checked it out yet? You likely will need to take somewhere between 9mg-25mg of Melatonin at night for relief. I often split my dose - 20mg at bedtime and another 10mg later after a hit. Dopamax sucks!!

Hey Jon, does that mean that we are hoarders? I have found that expiration date to be bogus too. Even asked my pharmacist friend about it. It is important for some meds, but not nearly all of them.

Way to go LM!! Yup, that pred will buy you some PF time. Used sparingly a few times a year it is wonderful. Did they ever do a scan of your head? That is so very important for this disease. Basically it rules out other stuff. Please push for one. Push hard too! We had a Canadian who had to wait 6 months or so to see a Neuro and then another long wait for the scan. It was not CH. He had surgery and became PF. Wouldn't that be a blessing? While I admire Canada for insuring all, I hate their system of wait, wait, wait. And the fact that they will put you in the hospital for something, but not do any testing to diagnosis the problem. Best of luck and please keep us posted on the outcome.

That is wonderful to read UMASS!!! I have had pred end a cycle for me. Of course it was not my standard Sept, lay low time either!!! My guess is that if you have been off the pred for 3-4 days and no hits, you are likely good to go. Suggestion. I keep a taper pack on hand so if needed due to travel or weather and I am likely to get a random cycle started, I take it. Usually happens about twice a year. And it is just the standard taper pack.

CHF Sorry for the late reply. Short Acting NOT ER (extended release). As Jon said, ER can mess you up and you think it no longer works, or never worked!!! Short acting, I too tailored to my normal hit times. One during the day and two spaced out over the night. Trust me, if you are in cycle, you will NOT forget that second pill after you kill a hit. I had to beat this into my docs head BTW. Sure have spent a lot of time educating my Neurologist. Too bad it doesn't pay in dollars. At this point, I mostly go for the annual for one script for the neck pain and to educate the sweet man. He is a really good man, just not enough education is given to these guys in school. Imitrex: I have taken exactly two pills my whole life. Not afraid of shots, just not going thru the problems that Trex brings. Heart disease? No thanks. I would rather beat my head on the floor than touch it. Of course that is just my opinion. And we know that thing about opinions, right?

If possible, go to the Convention in Chicago!! They will stress O2 and teach him how to use it among many other things!!! It is in September for a weekend. You will learn a lot too. Many supporters attend with their CHer. Info is on one of the other boards on the main page. Also on the opening home page where you start when you sign in. It would be great for both of you.

Most people that I know who have taken Topamax refer to it as Dopamax and hate it. My neuro prescribed it for me and told me to check my internet sources to see how it is helping. Well, it causes weight loss and I was already down to a stick figure. Never took it. Especially after reading that a lot of people really hate it. I did not see the pressure issues mentioned when I checked for side effects on the Net just now. But I read over just the main side effects. Didn't go to the other ones that only affect a few people. Please bring this up when you see your doctor. My only side affect from Verap was blood pressure went too low. And dry mouth. Your doctor should be able and willing to let you try the Indomethacin. Definitely explain your situation and ask!! Now, I will cross my fingers that you get it and it works for you. If not, then you will have confirmation that it is not hemicrania. If that is the case. if your BP is good you could increase the Verap. Chers take very large doses of it for relief. For CH, you might find that more Verap. allows you to taper off the Topamax and feel better. ATB

Wow. That length of time for an attack is different. Most don't go over 3 hours, but some do. Do you need to move around or do you need quiet and dark? There is a thread on the Clusterbusters Board that describes how to use your O2 to the best advantage. Ii is work actually. How are you using your O2? You need not show all the symptoms to have CH. But you must show some of them. I gather that your neuro did a scan of your head? And has anyone given you Indomethacin for a trial run to check for Hemicrania? Some of your symptoms fit that type of condition as well. Like the length of your hits. But you do respond to standard CH meds. Hemicrania does not respond to Imitrex usually. So, the question remains. Many Chers take up to 960mg of Verapamil. If you have low blood pressure that prohibits a high dose. Perhaps your neuro could try upping the dose for you if your BP is ok at the 360 you are now taking. I would suggest that you also read the D3 Regimen in the Clusterbuster Fiiles as well. It has been a huge help for many of us. Simple and easy to try for a few weeks to see if it helps you. ATB

Not sure if he knows the definition of chronic. Some authorities say only two weeks PF for a year and other say four weeks. Many of us go thru that fear when we have a cycle that is not the norm or lasts longer than usual. I have read that for some people they actually find it easier! They say it beats the wondering if they will start a cycle this week or not. Sorry, that is the best I have to offer. What is he doing for his CH now? Has he found no way to get it under control at all?