spiny

Welcome! Sorry you need to be here though. Nocturnal hits suck. In my opinion because you don't realize they are there until they jack up a good bit. As a 'nocturnal' myself, I will address that. Grab some caffeine as you head for the O2 and down it fast. Cold seems to work best. I use iced coffee or V8 Energy. The shots make me vomit. O2 will kill a hit, but not prevent the next one coming behind it. If you are getting hit every two hours at night, you will kill the first, fall asleep, get the next one on time. Your O2 will not prevent the next one. Are you hyperventilating on the O2? Do that till the pain recedes. Then stay on for another 5 minutes with a normal breathing rate and the O2 turned down to support that. Many people think that if they get another hit in an hour or two, the O2 is not working. Well, it is. It is an abortive, not a preventative. So, the next hit is going to come! Sleep in a recliner partially reclined but with your head above your heart. It helps a lot and you will wake sooner if you get another hit. Pile pillows around until you are comfy and secure. Start hyperventilating when you first get up. It really helps even with just plain air. And you will use less O2 when you get there. Eat regular if possible and schedule your sleep. Naps can bring on a hit and having screwy times to go to bed is just aggravating the dragon. Set a time to sleep and a time to get up. Stick to it. Really tough with night time hits, but very helpful. You do not mention a preventative, are you on one? Verapamil perhaps? That is normally the best one to take and the first one you should try. It is a cheap med to take. With CH, you likely will need a pretty high dose. Likely he will start you with 240 a day and step up from there. Insist on the Short Acting vs the Extended Release- it works much better for us. And you can tailor when you take your pills based on when you get your hits. At three times a day, I took my first one at noon, then dinner, then late at bedtime. Just keep them at least 4 hours apart. Unless you have other health issues that get in the way or have low blood pressure, you will up your dose till you get relief. If you get hit with no O2 around, then grab some caffeine while running really hot water in the tub. I get in and let it fill with water as hot as I can stand it. Often I have a full normal tub full by the time I get out. I just keep adding more hot as it cools off. ATB and I hope this helps a bit. Hugs!!!

Have you tried Imodium for the diarrhea? I helps a lot of people. And there are prescribed meds that will fix it, but at a higher cost of course.

That sucks so bad Wolf. I advise that you make a trip to Walmart or Amazon and get the vitamins needed to do the D3 Regimen. With Amazon, you will be up and running in a couple of days. Wally World is sketchy for finding K2. While getting or waiting for those, call your PCP and get a test for your D3 levels. You can start the vitamins ASAP. That is the best jump start to keeping your pain low that I know of. Many are pain free just with vitamins. Verapamil is the best pill to take to try to control a cycle. It lowers blood pressure. So, bear that in mind. O2 - pure - is your best abortive. It will be your best friend if indeed you are back in cycle. You need at least 15lpm to abort with. We can teach you how to use it. Medicare will not pay for it. So, you might be jumping into the boat with the Welding O2 users. Easy to do and quickly done. Just don't say that you are huffing it! And since it has been so long, a brain scan is definitely in order. You need to rule out other bad stuff. We have a good group here. We know what it is and we fight it together.

I think that you will find Verap. in the short acting form (take 3 times a day) more effective than Depakote. It is normally the first line of attack in the world of pharma as it works the best. It can require high doses to get you to PF status. Verap will lower your BP and you will need to watch that as you ramp it up if you change over. I would take mine not at meals three times a day, but when I was most prone to hits - afternoon, evening, and during the night. It worked better for me that way.

No apology needed Angela. Working up the amount of Verap is common. Some go very high if they don't have side effects and it takes that much to keep the CH at bay. If you can, make sure that you are getting the 'short acting' version, not the 'extended release' type. For some reason, it works better for us. If your script says take twice a day, it is likely long acting. Also, keep an eye on your blood pressure as Verap will lower it. I hope that they gave you a non-rebreather mask. That is the kind with a bag attached and no outside air gets in, just pure O2. The D3 regimen is great!! It has helped many people actually become Pain Free. Just follow the directions and I suggest you do a loading dose for starters. It can provide relief in a couple of weeks if not sooner. And it is all good for you. Are you aware that 'Chronic' means that you do not have more than 2-4 weeks headache free in a year? Has it been that long for you? Have you tried caffeine at the first sign of a hit? It can abort one if taken at the very start. And it is great to drink one really fast on the way to your O2.Did you get any instructions on how to use your O2? That is really important. Welcome and we hope to see you pain free ASAP!!!!!

Wow. You have been thru a lot! Do not worry about being 'new'. We all were once. The sore knot on your shoulder sounds like a cluster knot. Many patients get them. Yes, they hurt like the devil too! If you are located in the states, the first med of choice is usually Verapamil. One of those meds that you increase the dose as you go until you get relief. O2 is the number one abortive. I am going to message a member who has access to a form to print out for your doctor. Hopefully he is available. Another med given is Prednisone. This is given for a short time until the Verap kicks in. I'll check back in a bit Cody. Hang in there. This condition is not the end of the world and it can be controlled.

I wish I had an answer for you, but that is one that I have never heard of before. And like you, I find it odd that both nerves supplying your face with sensation would wig out at the same time. On the CH side, yes. I get burning searing pain along many of the secondary branches as well as the three primary with an untreated hit. Wish I had more to help you with. Can you get in to see your neuro? Perhaps he/she could help.

Glad that they did scans. What medication did they put you on for your CH Lynn? Verap is the usual one tried first. Keep pushing if possible for your O2. That will be a life saver with the proper mask and method!!

Have any of these 'doctors' done an MRI or other scan of your brain? It is done to rule out other stuff and should be at the top of the list. Both sides definitely does NOT sound like a CH. Do you have a pattern of times when you know you will get hit? Like 2am, 11am, 4pm, 8pm. That kind of thing. Or are they random in their timing? Are you seeking dark and quiet when you get hit or are you agitated? How long do your hits last? I have read of a few people getting nauseated, but not many. The sneeze, ah no. I don't remember reading that one. Generally speaking, narcotics including opiods do nothing for a CH. Zip. If you had not had a head scan, please push your doctor to do one.

I would try deleting one vitamin at a time to figure out which one is upsetting your stomach. And I would start with the Calcium with magnesium and zinc in it I think. That is the way mine comes. Give it two days and then try deleting another while starting back on the calcium. That may be a bit longer way to solve the problem, but it should maintain the relief offered by the regimen. The other way is to stop the whole regimen and begin taking them one by one with about two days between additions. That might deprive you of the benefits for a while though. Let me know how it goes Canto. ATB

You can spread them out. The one thing that I know of to be concerned about is if you are on Verapamil, it needs to separated from your calcium. I suspect that Batch will check in soon and he is the expert. You can message him too. He is very good about getting back to you. Are you taking any of the meds given for CH?

Thanks for the followup Charlotte. I hope that you are well!!

You did great Jeff. No sweat. Everyone has a life beyond the forum at this time of year I think. Yes, killed the 'dark web' jerk Jon. But the cascade of events following that could not be helped. Jeff donates his time and energy to keep the board up and running. Software is not always logical. That Is why I just ban and contact Jeff!! I am very sorry for the fallout. Also very glad that we have Jeff on board to keep this thing up and running!!!

Good to know Mit! Thanks for passing this along.:)

How about restricting messaging to members who have at least 3 or 5 posts under their belt? I have seen that done at other locations. It forces the user to post first so we get an idea of what is going on before they start any private conversations?

The only thing with the D3 is not to take it at the same time as you do Verap. That needs to separated by several hours. That is the only restriction that I am aware of for the regimen. Personally, I take all of mine at night. Just works for me. Vitamins and then bedtime. You could take some in the am and some at night to see if that helps.

Hey Dan and welcome. It sounds like a new cycle may indeed be starting. My cycles would start with one hit per day and move up over the next several days.I strongly suggest that you read about and start the D3 Regimen. Vitamins you take daily. It is an anti-inflammatory regimen for CHer's that has really helped a lot of people. Easy to do and it will kick in usually by about two weeks.It can be found in the Clusterbuster Files section of the board. The beast can change. You may find that most of your hits are nocturnal now. Do you have your abortives ready? Energy shots or some form of caffeine? Do you have O2? It seems to be time to marshal your materials to fight the beast. And if you plan to bust, now would be a great time to start. You are med free, correct?

Coming off of Pred means hits for most people. It is a great temporary drug to help with the pain, but continued use is not a good idea.Does your doctor have you on Verapamil? Pred is most commonly used as a 'bridging' medicine to take until the Verap kicks in. And you are right, the Pred was just keeping it at bay. Bumping back up to 60mg will help, but only until you drop it down again. For some the CH returns at 40mg and some at 20mg. All variable. And you do need to wean off of it to bust. Any Energy Drink or Shot is fine. Some use strong coffee. I have often used V-8 Fusion Energy. Just grab one at the first twinge of a hit and drink it down fast. If you can, grabbing a cold glass of water with lots of ice can help. Use a straw and aim the straw at the palate on your CH side. They work very well when taken early enough. Many of us can drink them at night and still sleep. How long have you been on the D3? It can take a couple of weeks for most people. . Detox is hard. For most everyone.

Welcome alaskagirl! It is nice to know that you finally got some relief! Yes, O2 is your best friend. And it can be very hard to get, which is stupid. Suffering thru these is hard. Finding what works for you is important. Good to know that you now have a plan for the next cycle!! ATB

Welcome Primrose! Most neuro's don't know how to instruct you in the use of O2 unfortunately. And I do not support the idea that if O2 doesn't work, you don't have CH. That is bunk. The proper technique is the important thing. Used improperly, many do not get relief. People who can get O2 thru their insurance use a service. Those who cannot, will often use a welding set up to get their O2. How you use it is the MOST important part. You have gotten a lot of great advice already. Likely that pain in your nostril is from a branch of the Trigeminal Nerve - which can light up half of your face and side of your head. It runs everywhere on one side and you have one that enervates the other side. A diagram goes a long way in explaining 'Why does my ear hurt?' stuff. All the best and hang around. Ah and I use the breathing tube too. Nothing touching my face please.

You have had a rough year girl. Hugs and positive vibes coming from here too. Just wanted you to know that I was thinking of you. Glad that you are having a successful grow this year! That is a help. That sucks about the publisher!! A better one will come along soon I hope. You have worked a long time writing that book!

If the script says 'Twice a Day' it is the Extended Release type and will not work as well as the original Immediate Release. Immediate Release is taken 3 times a day. I had to stay on a low dose due to BP issues. It worked when I took the Immediate Release and I took them at 12, 5, 9pm due to my hits being nocturnal. And my max dosage was 240mg.day! But, low BP certainly made me tired!!

The only time that I have had a Error 403 is when there was a smiley face in the text. You might follow Batch's suggestion if deleting any emoticon does not help. Let me know what happens!

That 'zero resistance' is pretty darn important for me. I can't go hard if there is resistance from the reservoir. Free flow of O2 = better abort!!!

I have no problem getting back to sleep. Most probably don't. I recall one member saying that they could not. Actually, out of cycle, I will have caffeine about 6 or 8 pm. Just don't want a rogue hit at midnight due to barometric pressure drops. For me, they will come. With caffeine and O2, the pain is gone in 10 minutes most nights in cycle. Then it is back to sleep till the next one. I also spend many nights sleeping in the recliner. Head above my heart. It helps. I wake sooner when hit too.