spiny

I suggest replacing it with benadryl. Works much better for me.

Yes, I have used it to abort as well as for shadows. As with anything else, take it quick, do not take the wait and see approach. I found some real candied ginger 2 years ago and grabbed it. Before, I had used some lozenges that were not nearly as effective. I suggest checking on Amazon for it. Mine is Little Temptations crystalized ginger - ginger with sugar.

Welcome Elrik. Most find 10lpm to be too low. The recommendation is 15lpm and many of us need 25lpm at the start. I tried 10lpm at my PCP's office a long time ago. Neither of us knowing any particular method, I just breathed it rather fast. You need technique to get it aborted quickly. And you need to stay on itfor 5-10 minutes after your pain is gone completely. Cheat and you likely will get hit again right quick. How are you breathing it? Napping is a big no-no for most. A nap will bring on a hit it seems. As you wake with one. If you are exhausted, you sleep too long and wake with a bruiser. It sucks when you are so tired. Keeping to a consistent sleep schedule is a really good idea. What do you take as a preventative? Triptans are for aborting. You need something to prevent if possible. The most commonly used drug is Verapamil. Often in pretty high doses. Did your neuro put you on a preventative? Any caffeine taken at the first sign of a hit will help. Many like Energy drinks or shots as they feel the taurine in them is a help. Some use strong coffee because that is what is available to them. Do not wait till it is screaming to drink your caffeine! If all the neuro gave you is O2 at too low of a flow and triptans, you might need a new one. You need a preventative in addition to an abortive. ATB

May you have a lovely holiday Jimmy!!

Interesting abstract Cheryl. I had a long remission that ended in my 50's. They returned with fury too. Previously I had been Chronic with lower level pain and no nocturnal hits. When they returned 15 years ago I was Episodic and Nocturnal. Untreated or poorly treated, my cycle runs Solstice to Solstice. Unless it gets prolonged by a surgery or something That produced an 8 month cycle a few years back. Several males have had long remissions too. Upon return several changes are notated, such as going from daily attacks to nocturnal attacks. Also, the greater severity is common too. So I would say that the changes you are experiencing are rather common. I suspect that you have looked at the Trigeminal Nerve diagram. It shows all the branches involved with that nerve. The three main branches are over the eye, under the eye, and the jaw. So, that covers all the nerves on the entire side of your face on your CH side. Teeth and sinuses included. As far as rain is concerned, it usually includes a low pressure front. For whatever reason it is falling barometric as opposed to rising that sets my head off. That is pretty common. It is also common for migraines. Verapamil is top med for it too, not Topamax. In addition, pred is awful for you over the long haul. Like needing hip replacement awful. It is normally used as a 'bridge' medication to get you thru till the Verap kicks in. You might discuss a medication change with your doctor. And he should know to provide you with O2!!!! It is the best abortive out there and not harmful to your body. It is infuriating when this is not offered as a first line of treatment!! Advance warning - Medicare does not cover O2. You might want to try some caffeine at the first sign of a hit coming. It can be a great help. Also, you can set up a welding O2 tank and buy your own O2 without insurance or a script. You will need a non-rebreather mask to use with it for best aborts. Oh! Don't worry about being Chronic yet. That means you have less than 2 weeks pain free in a year. It is quite likely that come spring your cycle will end. ATB

Sorry to read this Moxie. There are no words that help, but you know that you have friends here who support you.

Hey Cheryl. Can you tell me where you read this info? It is interesting. It is nice that the stats are changing on who gets CH. It used to be stated as 2 out of 10 are female. Now that is stated many places as 4 out of 10. A welcome change. Barometric changes and changes in sleep times are riggers for many. My head is a pretty good barometer!

Small suggestion here. You currently have a non-rebreather mask with a bag that does not support your breathing. You can take an unscented fresh garbage bag and use that instead of that little thing giving you a hard time. Tie up the open end tightly. As in air won't leak tight. Now, cut a hole in a corner where you are going to either push the stub of the previous bag or the bag with the bottom cut out. Remove or open the bottom of the bag on your mask and insert what is still attached into the garbage bag. Tape that up really well. Now you have a really big bag to hold your O2! Then you will have the pleasure of plenty of O2 for your next breath waiting for you - not you waiting for it. Not the best rig, but beats out running your O2. Turn on your O2 and grab a few slurps of that caffeine while it gets up to speed. Less than a minute and you are on it. That should get you through until your cluster mask gets there. Personally, if I can't get the high flow needed, it is a waste of money to use it. Takes a looong time to get relief and the relief is not lasting at all. Like executing a bat turn in the living room and heading back to the office cause it is back not lasting. When doing your post hit breathing, dial the O2 back to match your breathing. You should be breathing at a normal rate at that time, so you won't likely need 15 or 25lpm. And no grease or oil or anything on the threads of anything where you are pumping O2. THMH gave you a great primer on that one. One more item. Try holding a full inhale of O2 for 10-20 seconds. It really does help. Then exhale with that crunch. Works great. As your pain levels drop, you can relax a bit on your breathing technique. By the end, you should be breathing normally.

What fun!!! Glad you got a giggle out of it and sent them elsewhere.

Caffeine can help with shadows. An energy drink or shot is best. Coffee works well for me. Benadryl is good actually for CH. Part of the D3 Regimen. It will make you sleepy, so I would try one at a time during the day. Are you on the D3 Regimen? It really helps a LOT of CHers. ATB

I agree with Denny. Message Dr. M. Hopefully he has some good ideas for your member.

Hey there! I take CBD for other issues. But, mine came with a chart detailing how much to take based on weight. If you have some CBD already, I suggest you contact the company if they did not supply this info to you. They should be able to tell you how much to take daily. ATB!

Barometric pressure drop is caused by everything you named plus flying. I asked for a good nautical barometer for Christmas one year it is so stinking important! I live on a mountain, so traveling is always an issue for me. Watch your weather fronts moving in for low pressure fronts. All the best to you!! I hope you got a good nights sleep too.

Hey Jimmy, I had a ten year break from them. No reason as to how or why, but they just vanished. And when they returned, I was Episodic , not Chronic. Untreated, I will have a 6 -8 month cycle that starts in September. I will say that during my years as a Chronic they were milder than what I get now. Now they are screamers. So lower frequency, but much higher leel of pain is my part of the elephant now. And I am extremely sensitive to barometric pressure drops now. So, if the weather is going hinky I know to prepare. When I was young they were 20 minutes long - always. And only daytime hits. Now they last 2.25 hours if untreated. They start at bedtime and run till 6am every night. Untreated they last 2.25 hours and I get a fifteen minute break before the next hit. So, just pointing out that the beast will change all by itself, if and when it gets ready. We are just along for the ride. It teaches you be viligent at all times. So yes, you can get a reprieve of many years.

Hey Jimmy! Have you tried an energy drink or shot at the first sign of a hit? It can really help. Actually, caffeine is our friend. I think that THMH was referring to not taking Verapamil, not Melatonin. He will straighten me out if I am wrong. He can't take Verap due to heart response to it. If you do the full D3 Regimen, including the Benadryl, I would not suggest you take Benaryl and Melatonin both at night. You need to see how the Benadryl affects you first I think. At any reate, they will both make you sleepy and banging around in the night is not a good feeling. Try the Benadryl and then add Melatonin later if you need it.

To my knowledge, there is not an issue. I take CBD Oil and I just called the manufacturer with your question. Their 'hard - do not cross' line is to separate your CBD by two hours from any other meds, including OTC like Tylenol. People forget Tylenol is a med and often do not think about that one. But it puts two meds in competition without the gap between injestion. Hope this helps you!

Way to go Rose!!! Have you looked into the D3 Regimen? It consists of OTC vitamins. It has been a huge help for a lot of us. It is advisable to get your D3 levels checked by your doctor first. She sounds like she would be ammenable to doing that now for you. Then, start taking the vitamins. At the least they will slow ramp up time down for you and reduce the intensity of the hits you get. I take them year round as do many here. Healthy, ya know?

Your eye can get red, swollen, heavy lidded. Just a multitude of things can remain. Sometimes I notice that my eyelid feels heavy and that signals a likely attack. One cycle, I could count every hair on that quarter of my skull for months. Yes, oddball pains are common. If you look up the Trigeminal Nerve you will see the area it serves on each side of your head. All of that can be affected. Load up on some energy shots or drinks. Slam one down at the very first sign of a hit coming. Caffeine is your friend with this mess. Get your doctor to prescribe O2!!! Your best relief is in that tank!! I have used the hot water method a lot. Make it very hot and put your feet into it. Add more hot as you go so it does not go cold on you. At times, I just got in and cooked!! You want your D3 values up around 100. At least 80 I think. Have you been doing the entire Regimen or just D3? The Regimen has given some patients complete relief from CH. Others experience a reduction in pain levels and a slowing of the ramp up to a full hit. The pills are too slow acting for Chers'. Great for migraines though. You should get the injectable for CH. What amount of Verap are you taking? We can take really high doses of that to get relief. A steroid taper pack is a big help as a bridging med while the Verap builds up in your system. If you are thinking of alternatives, post about that on the closed boards: Share your Busting Stories and Theory and Implementation. Those are closed to Google and the other Bots out there. You will get a lot more input. Haha. I see that THMH has replied.

Welding O2 works just fine. You will need to rent or buy a tank, a regulator, and a mask. The non-rebreather mask sold by our sister site and is the best out there. About 30.00 for it. If you buy the tank, you can have it filled by any O2 company. If you rent, you must go to the company you are renting from. The regulator needs to go up to 25LPM. A welding regulator does not have setting for that, so if you go that route you just open the tank enough to have a full bag when you are ready to take the next breath. You can shop around for that bit. Have you tried hitting some caffeine at the beginning of a hit? Energy shots, energy drinks, and coffee can all work for your. It can stop a hit or at the very least make it much easier to abort the hit. And few have trouble going back to sleep even with the caffeine. Being nocturnal too, I find that sleeping in a recliner helps a lot. Just keep your head above your heart - don't lean back all the way. You can get fewer hits and you wake sooner so they are easier to abort. I strongly recommend The D3 Regimen. Just healthy vitamins that can lower your pain level and slow ramp up. For some, it does even more.

Yes, my cycles have been Sept. thru March for the last 14 years. However, as is often the case, this year it changed and I have had a 'low' cycle most of the summer. I suspect it is due to other health issues I have had to deal with this year and the two surgeries required and it will return to the norm over the winter. A few years ago I had surgery during cycle time. The cycle was under control until the surgery. And that cycle lasted 8 months, not the normal 6. So, I suspect something in the anesthesia sets my head off. In the beginning I was CCH, but the pain levels were lower and the duration much shorter. I had a 10 year remission and they returned as ECH with longer duration and much higher pain levels. The beast does change.

I think that you have already done the most appropriate thing - find a new Neuro! I just read the Mayo Clinics' definition of Occipital Neuralgia. I don't think that your symptoms are a match for the diagnosis you received. Some Neuro's know too little about headaches. That is why they have headache specialists in Neurology. Harder to find, but much more informed. When I first began my adventure with CH, my hits lasted 20 minutes. Over time they increased intensity and duration and today last 2.25 hours. I am ECH. My cycles are pretty regular. They begin with one hit per night and ramp up to 4/night. So, with one hit at night for a couple of days, I pretty much know that I am going into cycle. Or if i drink a beer an get a hit, I most certainly am back in cycle.

Hey Yann! You can go ahead and start the D3 Regimen without getting tested first if needed. Many do. It really can be a big help with the pain levels and also buy you some time to exit the scene before the 'bad' part hits. I would definitely get that train on the track now! Then when you can get into your doctor, have the blood work done. ATB

Welcome Tracy. I think we all hear the 'they go away with age' thing at least once. I have yet to see that happen. Long remissions, yes. The oldest patient that I have heard about is 102! Read the Clusterbuster numbered files. They are full of great info. I strongly suggest you learn about the D3 Regimen. It can work wonders and consists of vitamins -OTC stuff. Personally, it lowers my pain levels and slows ramp up so I have more time to grab some O2. You need O2 to kill any hits. It is the best abortive. And a non-rebreather mask to breath it thru with a flow rate of 15lpm to 25lpm. Read and ask questions! That is pretty much how most members start. Busting is covered in those files but you will likely have questions as well. That is cool. There are some meds you cannot be taking while busting. That is important. The closed boards are where you will find discussions about busting. They are closed to the public - members only. Theory & Implementation and Share your Busting Stories and Clusterbuster Files are all closed and members only. ATB

I will say yes. We had one member, a college student who lived in Canada. It took months to get the scan, more months before surgery, and PF post surgery. I haven,t heard from him in several years now.

I was maxed out at 240 IR. I took it noon, dinner, and bedtime. Worked great! Until I quit because my dentist had a hissy fit over hyperplasia! So I stopped the Verap and the CH returned. It never worked again for me. My bp went down to a resting 80 over 60 with just that small amount, so upping the dose was not an option. I took it year round too.