spiny

I hope that you found the 'cause' for you. 'Cure' is a bad word to use though. Too many have tried several methods of exercise and while it helps, it is not a 'cure'. Actually, most CHers' shy away from any stated 'cure' they read. And for good reason. CH can morph and will morph over time. You may get 2 years PF status only to have it return - again and again. Several members have been very shocked when they have a ten year remission and it still comes back. It is a very rude awakening. Stay PF and be happy. I am glad that you found something that works for you!

Can you hit an Urgent Care Center? They could diagnosis the ear ache ASAP. Not sure where you are located, sorry.

The scalp sensitivity is something I had to deal with one cycle. That was before I got a Neuro. It lasted six months. It made shampooing and brushing my hair an awful experience. Ear pain? Yes, can be the CH too. But with difficulty swallowing, I would have that checked out if possible. Mainly because it hurt to swallow and that is often a sign of an ear infection. It could be CH trigeminal nerve pain or it could be an infection. Best to rule out an infection quickly. But, with the scalp pain too, I would suspect the CH. Just be safe and have it checked out while you wait for your Neuro appointment. BTW - it really sucks that the CH is back now!!! Glare......

Oh, I get that Jon. I just find it funny/annoying that that is the answer I get. Of course, being female, I can't even have 'CH' according to some Neuros. Slowly we are dragging them into the 21st century and eyes are opening. It is all good. I went from an easy Chronic to a hard Episodic! Yes, there is a reason, yes there is a cause, yes there is an answer. I just wonder who long it will take for the doctors to get the 'new' news. They seem to lag pretty far behind for the most part. New Neural Pathways are our biggest help currently in my opinion. Mind you, my opinion. And most are thankful for those new connections as they age! We need them!

Hey Moxie! The 'cure' has been often stated as 'aging out' of CH. Guess I will see how big a lie that is when I hit 80!

Just to chime in - you are getting rid of the CO2 and raising the O2 and building up your strength and body too!! Dang good in my book! Carry on and stay healthy and happy d-rock!! It wish I could do that too! I would be in pretty great shape every spring! Thank you for the contribution!

Attacking and demanding attention is not a good way to post. You want input from those who are here a lot, you have had it! State your case and stop whining already. We are open to anything that helps with this hell. And yes, some, including me, have had 10 year remissions only to find that the beast just laid in wait and GREW over that time. I wish you the best and hope that you never get another parasite. Understand that many here have had sinus surgeries and our sinuses reamed out prior to diagnosis. We have had teeth pulled and given up favorite foods looking for relief. We, as a group have done a lot of things suggested by the medical field before getting a proper diagnosis. We, as a group, have helped many people get to pain free status. We began with ONE man! Coming in and carrying on like this is not the way to get anyone to give notice or credit for anything, much less a CURE! You are being very arrogant! Not to mention demanding! Not to mention your mistaken belief that you could get the funding for any 'trial' of your cure. Lots of luck with that one and let us know when you have a trial going. We keep abreast of ALL trials for anything to kill the beast. Over and out.

We are here to help! So, I am very glad that you found us. The MRI is to eliminate any other issues in your brain. It is a good thing. Some people present with what seems like Ch, but the MRI finds something else. Not often, but often enough to make it a good thing to get out of the way first thing. Not having a weepy eye is not an indication that you do not have CH. You can also have sweating on that side only or a runny nose from that nostril. As well as the predictable times of your hits. Fun Times is spot on with the caffeine too. Since you know when your hits are coming, you can try to get the jump by hitting your caffeine about 20 minutes prior. It can help a lot for some. O2 O2 O2!!! The D3 Regimen can do amazing things for many. Just vitamins taken daily and all good for you too. ATB

Hey, it isn't Christmas yet!! He has a few days. Don't go all straight on me now.

CHF - Could you post the link for the O2 printout?

CHF has a lovely link on the effectiveness of O2 and one you can print out to take to your doctor too. His job is to fight for you! Not blow you off. I would agree with the dropping of the Indo based on your experience with it. It is a drug of elimination! It did not do that, so why take it? You are the second person I know who calls it the dragon! I am the other. On bad days it is the octopus.

Hahaha!! He will be alright in a few minutes though we hope! ROTFL!! I could put out a 'snack' for him.

Okay - I watch LSU games! Just helping them. Go Tigers! I refer to the TV as the Blue Light of Death. Husband does not get it!!

I did !!! I hope that you did too! I will be stealing the 'Gobble till you wobble'! Hahaha

I think that there are too few of us to have a regular support meeting like AA. However, many have formed groups who live in the same general area and meet a few times a year to visit and exchange war stories. The big group is the Annual Clusterbuster Conference. In 2020 it will be held in Chicago in September. It is truly an amazing experience to meet a big group of people who have CH!!! Well worth the money and trip. You will learn a lot and be surrounded by people who 'get it'. ATB!

Don't dread it - prepare for it. Beat it to the punch! Being prepared has been the biggest help for me in terms of 'dread'.

Hey Karen. We tend to turn our back on pharma when it does not work - repeatedly. If it were working, there would be little use for this site to be here. He may find relief with pharma if he is on Verapamil at high doses. It carries risk too, but is the mainline treatment and offers the best relief to the most people taking pharma. I understand your dis-comfort with alternatives. Read up and ask any questions on the closed boards. We try to keep that in the members only section due to the bots running around the net. He needs to try an energy drink at the first sign -when his teeth first say 'HI!'. Slam it down fast and cold. The D3 Regimen should be started right away. It can take up to 2 weeks to help a lot, but it gets him moving in the right direction. Some people get relief in a week. All safe good for you stuff in there. O2 is the prime aborter and a huge help! Medical O2 is normally a lot more expensive than a welding set up. And he will need a script for it too. Welding he can do on his own. And I would add, give up to 25mg of Melatonin at night. Not sure how much he is taking now, but 6mg is usually not enough.

I found our sister site first. Clusterheadaches.com Then I came here from there. That is the site Denny is referring to in his post. I was doing the massive search for any info on CH for hours every night. Many here have done that one. CHF, you may be right. It would be higher for me as I come here and I enter it on DDG on occasion. So, it makes sense. The FB group is a good one, but there is 'drama' and some who know little to nothing handing out info that is not correct in some cases.They have tried to make it work and expended a lot of effort doing so! But, people are people and that brings drama. There are some bad ones on FB too! Say 'mushroom' and they toss you out of the group. So far as I know CHF, we do not inquire how people found us.

I use Duck Duck Go. We come up on page one. So, the search engine is the issue, as Brain stated. Ads buy location! As Brain stated above.

Greetings Spike! Light has brought you to the right place! We are more than happy to help you try to get this under control. Give us a bit of back ground on your Ch. What are you taking now? That sort of stuff is a huge help to our members who will reach out to help you. ATB! And thanks Light!

Wonderful Kat!!! Happy Recovery!

Hi Lady Graham! I know what you are talking about. Mine began at 22 as chronic. Low level pain and lasted 20 minutes. I took Enderal (sp) and another drug for them. Doc's could not make a diagnosis. I would get hit about 8 times a day when in high cycle. Then a reprieve! 10 years pain free. During that time, the beast changed and grew. When it returned, it was M.A.D. I then began with the cycles I described above. Now I am over 70 and still have the lovely things. Glare..... Please.look into the D3 Regimen. It is over the counter vitamins that you take daily. It is best to get a blood work up including your D3 levels. This can be a huge help in reducing the level of pain. What are you taking now? Do you have O2 and a non-rebreather mask with a regulator that goes up to 15lpm? Or are they treating you for migraines not clusters? ATB

Hey Brain, I just deleted it rather than move the entire thread.

In the way back machine, when I had no abortives, my pattern was: 8pm the first hit arrives. It lasts 2.25 hours - untreated. 10:30pm the next hit arrives. Repeat of 2.25 hours of misery. 15 minutes of pain free between the two 1am the third hit arrives. Repeat the same pattern for 2.25 hours 3:30 the fourth hit arrives and does the same as the previous three of the night 6 to 8am Sleep - in a recliner. So, that was my nightly schedule for 6 months if nothing else got into the mix. Then I was pain free till the next Equinox. This went on for years before I got help here. I cannot take triptans and the Verap had quit working at the low does I could tolerate. For the first few cycles, I was able to get an hour nap in the afternoon. Then, the dreaded 'No Naps' hit me. A nap would deliver a daytime hit! The beast will morph over time. It just does. Hang in there!!!

The Vitamin D3 Regimen is composed of vitamins! Nothing to worry about with a drug test at work! Easy and good for you. I strongly suggest that you consider getting started on that right away. Yes, it is best to have blood work prior to see where your vitamin D is at the moment. Then you see how much loading you might want to try. But it is to your advantage to begin taking the vitamins now and get the blood work in a week or two if that is how long you must wait. Please give it consideration. It will not conflict with your search for a new Neuro either. If triptans give you heart symptoms, be sure to let the new Neuro know that! It can be a dangerous drug. Yes, the injections work fast at killing the pain, but only two shots allowed in 24 hours. And insurance usually will pay for 6 to 9 injections per month. So, you have to use them with care and not every day either. We do have a method to break the auto-injector apart to get 2 or 3 doses out of the unit rather than one. However since you experienced heart issues with the pills, I think you might want to avoid any triptans. How often were you taking it in pill form?