spiny

If you can't hack the Energy drinks, I can't, strong coffee works well for me. I keep it in the fridge. Left to its' own devices, I am purely nocturnal. Yes, it makes you hate to go to bed! Scary just thinking about it some days. I wind up sleeping in the mans recliner in high cycle as it wakes me sooner when I get hit and and I can avoid some of them altogether that way if I hold my something just right. Not sure what it is, but some nights I can skip one in the chair and that is nice. It sounds like you are seeing good results here, am I correct? How do you feel about the results? The addition of Benadryl will be a nice help. I take it in the am and at bedtime I take two, as directed. In the am, just one so that I do not feel sleepy. Melatonin can be a big help too for many. Not at the 3mg dose though. I would suggest starting with 10mg. You can work up to 25 -30mg if needed. I do recommend caution when doing both if you are not accustomed to either of them. Just to be safe so you do not find yourself stumbling in the night. With that in mind, if they are new to you, I would suggest starting with 2 Benadryl at bedtime. See how that goes. When you get up with a hit at night and feel fine, not wobbly or such, you could take 10mg of Melatonin. When in cycle, I take 2 Benadryl at bedtime and 10mg Melatonin. After the second hit at 10:30, I will take another Melatonin. Then after the 1am hit, I take another Melatonin. If in high cycle, I may take 20mg at 10:30. It can help avoid the 1am hit. The Melatonin seems to make them more mild hits.

Hi Monica! I am familiar with the 'stiff neck' and can say, yes, that is a signal for me that a hit is coming. Any neck pain on my CH side indicates a coming hit. Many have neck pain with CH. It will also create a knot on that side of your neck at times. I cannot watch TV or use a computer when getting a hit. The refresh rate seems to be flickering to me, at that time and the pain level goes up immediately with screen time. If I am not getting/having a hit, I do not have an issue. The Trigeminal Nerve feeds one whole side of your face and that quadrant of your skull. That includes the jaw. For me, the first branch to light up is the one above the eyebrow. For some it is the branch that feeds the upper molars Others, the lower molars and/or jaw. Jaw and teeth pain is common. Feeling that your bite is off at that time is not uncommon. I too have digestive issues, but they are not tied to CH, so no answer for you there. Sorry. Hope this helps!

Bust, the Energy Drinks make me sick and shaky. I keep coffee in the fridge made by the 'cold brew' method. Namely, you put grounds in the holder that goes in a jug and stick it in the fridge. In 24 hours, you have cold brewed coffee. Just convenient for me. I used to just make extra coffee and keep it cold for a hit. Caffeine alone works well for me and some others as well. If you can enjoy a cup of coffee with no issues, then I would try that. Cold is best for most CHers. Just the cold seems to help at times. Someone once said ' One for drinking and one for rubbing.' They were saying that they drink one and rub a can of whatever worked for them where it hurts.

Your 'share' will help others. Many will read it and relate. Now that you are a member, the closed boards are available. That is where the busting info and posts will normally appear. We keep those boards for members only. When discussing busting, post that question or thread on Theory & Implementation or Share Your Busting Stories. You will get more replies there. Being closed keeps the Bots from accessing that info. The D3 Regimen has helped many either get pain free or at least it slows ramp-up time and lowers the max intensity. It really does help a lot of people and is just taking vitamins to fight inflammation. It is always worth doing! And I will say Congrats for avoiding the Trex. I am lucky in that I cannot take it, so I never had to deal with coming off of it! It can be really rough to ditch when you are now having more hits and worse hits from taking it. For some it does work very well. For others it works, but which 9 hits do you kill for the month? That is a tough question. Likely you have read a bit on the 'morphing' of CH at one time or another now. It is disconcerting and a big worry for most when it does morph and change on you. Rather like 'Wait, what?, what happened here? But it is also common. Which can suck. Welcome aboard and thanks for a great intro! Knowing your triggers is very important and gives you a bit of control. ATB!

Well, he may think he is doing it for safety when he does not understand that many CHer's have a tank or three of O2 at any given time, year round. Even Episodic's do not wait for a cycle to hit before getting their O2 in order! They may store them carefully out of sight, but they are at the ready when needed. When you set it up, you check for leaks. You secure it so it won't fall and create a possible hazard. Odd that they will give you meds that can be deadly and that is fine, but O2 tanks are a hazard. I find this to be a bit insulting. Perhaps not intentional, but still insulting. It is sad that he does not understand this reality of Ch. By suggesting that you 'wait', he guaranteed you will have pain to suffer till you can get re-supplied. Glare..... As stated above by many, you can safely store and use it. Be it medical or welding O2., it is your best friend!!! Fingers crossed that your PPC will straighten this out for you. Likely he knows you better and will be willing to work with you when he comes into the picture. Written as CHF stated, you should get great relief with the huffing methods most of us use. PFDAN

Indo is very hard on the stomach and many who take it take a medicine to protect their stomach. They should prescribe something to protect your stomach lining. I am not surprised regarding your feelings. Any of the diseases we see here - different Headaches, can cause you to become depressed when you see no end in site for the pain that you are experiencing. Living with 'Life on Hold' is not easy. However, most of us find relief and figure out what, if any adaptations we can make to get our lives moving ahead again. It can and often does take time and can be terribly dis-heartening. By joining the community, you have found a whole new group of friends who 'get' your pain and frustration. They understand the mental burden that comes with feeling isolated and alone. They are the people who can help you with suggestions for pain relief and who truly feel your pain, anger and frustration. Use this resource by reaching out like you already did. It is there for that purpose too - so that you need not feel distressed or negative about reaching out. There is hope and there is life out there. We want you to have hope and live a full life. Just think, we all came together due to a terrible disease that most will never understand, feeling alone and pretty well ignored or deserted by the doctors who are supposed to help us. I truly feel that we have all been in that hole. And Clusterbusters and Tonys' Finnish site are both working to put people in contact and present data and personal information to help others get out of physical and mental pain too. They tend to go hand in hand with TAC's. Hang in there!

Hello Dr. J! I can respond to the temple/cheekbone bit. My CH is a glowing hot railroad nail in my temple. It grows and the pain crawls out of my head and lights up the branches of the trigeminal nerve. Then it bores into my brain and eye. My family sees me rubbing my forehead and the let me know because I am absentmindedly rubbing while talking or watching TV. And that is the end of my evening with uncontrolled CH. They began with one a night at 8pm. Then, weeks later they began to hit at night - right after I fell asleep. As the weeks went by, it worked up to its' peak of four per night, each 2:15 long. Long and short is, as the cycle moved forward, the head got worse. Then when it was over, they vanished. When I first began this journey, a long time ago, I was a mild chronic with typical behind the eye pain. Then I had a 10 year hiatus! But, they did return as Episodic and I found out what a '10' was. It was a huge shock. However, I now have them under control and have not had a cycle in a few years. All thanks to the information you will be reading here. Verapamil is a first line treatment for CH in the medical field. Along with Triptans. Some can get good control with Verap only. Others, no. The Neuro should think of those two first, along with a Prednisone Script for short term use. It helps provide pain relief while the Verap builds in your system. Long term Pred use can cause severe bone issues - AVN. No matter what he prescribes, you want O2!! Aways, O2. It can be a problem with insurance on occasion, so push hard. If you can't get a script for medical O2, then many set up an O2 welding tank and attach their non-rebreather mask to it and huff away. It is not 'dirty' O2. Read and ask away!

Hi dehabel. When you read the link I suggest that you print out a copy if you can. That way you will know what needs to be prescribed and can show a new doctor. Insurance can be a fight, but that O2 is life saving! CHF - Does your link contain that page? Usually you have that too. The D3 Regimen is several vitamins that you take to hopefully bring down the intensity of your hits and to slow the ramp up down so that you can get to your O2. Many people have gotten Pain Free doing that. Mid cycle? Likely not. Help prevent the next cycle? Yeppers. After such a nice long break, it can be freaky when they begin again! I feel your pain there.

This action is supported by all admin personnel. Each of us have responded numerous times to pm's and 'alerts' from this person. The fact that less than a handful of members have been banned in over a decade shows that we strive to help people. That is our only agenda. Please keep in mind that this is a safe place for people to discuss and work on pain relief and having a 'normal' life. We all have Ch. Every Admin strives to provide a safe place for our friends who suffer the same disease or similar. We are walking the same path as our members. Family clashes can and do occur on occasion. They are generally short lived and everyone moves forward, closer to the goal post, rather than creating divisiveness and discord in the group for personal reasons. The discord is not helpful nor does it benefit anyone. Sad as it is, it is necessary.

The statement above is over the top. Yes, you may post on any thread and you know that. It is polite, if you don't like the thread, to scroll on by and not even bother with it or the OP or the responses. That is also common knowledge. And you and I have discussed this already. More than once. What kind of person continues to attack even when there is no reason? Or expects the board that they joined and benefited from, to now decide how the board should be run to meet their personal needs? None of this is helping any other Clusterhead. NONE. Our goal and function is to help people with this condition to the best of our ability and knowledge. To HELP. Not argue. The thread also contained the note that 'someone finally acted' on their complaints. They finally 'saw the light'. Do you think this is a social club with limited membership and only for those super special people who can afford it? No, this site is for saving lives. As you well know. Lets get back to doing what we came here to do - Helping Others. Period.

Brain, please PM me this info. Light, you too could let me know via PM.

Jteira, agreed! It is a great read!

Have you read this one Pebbles? https://www.inverse.com/article/41733-how-does-lsd-change-your-brain?fbclid=IwAR0GHbDHPB-QZrHiwuudZWz0XNN-CfRiwQgm9dvdmFo07imEe6yV90aJ9WE It was posted by Brandon on FB. I have yet to read it! I really have a lot of reading to catch up on!!! Thanks for the new links!

Thanks for the links Brian and Pebbles! Citizen Science at work. Again. Nice!

That ACE2 receptor. I have read a lot about it recently. And actually have Quercetin on hand due to COVID. This is an interesting find. Did you save the link to their work? You get relief with an O2 concentrator? That is great, because it seldom works for us and O2 in a tank is a lot more expensive. Two thumbs up! It is very nice to read of relief in the community!

Welcome dehabel! What a lovely break you had!! I am sorry to read that it is over now. Barometric Pressure changes and for some, pollen as well, can bring them out to play. I was granted a 10 year hiatus that ended when I moved to the northern part of the state and into the mountains. Went from mild chronic to a normal, this really sucks CHer. With this site, I got it under control and life is pretty normal now. I moved 16 years ago and they come on time, every time if not prevented by me. Vitamin D3 Regimen has been a huge help for me and many others along with other methods that you will read about on this board. I have yet to meet a person who actually 'aged out' as they like to call it and I know several over 70 years old. I strongly suggest you check out the D3 Regimen. It can offer great relief and is plain old good for you vitamins. Are you on any meds for yours now? It is suggested to read a bit on here to get the most benefit from the Site. You can key in what you want to look at in the space by the magnifying glass icon at the top right of the page. Were you chronic or episodic? Did you get O2 and do you still have the rig? It can be a big help to slam down an energy drink or shot at the first sign of a hit. I use iced coffee most times. Ask a lot of questions if you want. We encourage that and reading too. You will learn a lot, very quickly. ATB!

With the O2 Cluster Mask, you will receive a mask and a tube. The tube is used by those who cannot take the pressure of the mask on their face during a hit. The tube, you stick in your mouth and inhale through your mouth and exhale through your mouth or nose. Just make sure you are inhaling strictly O2 - through the mask or tube. No outside air in at all! Pure O2 is the best way to kill a hit. That is why a concentrator does not work well. It is not pure O2.

That is a rolling tally for a certain period. So, if you are not posting very often, you don't get the likes and such that create the tally. Since your posts are well loved, you get a lot of 'likes' and stuff! Heal well, okay? You are having to deal with a lot!

Sorry Brain, what do you mean by 'bumped'?

Please study those things before you call them pathetic. You are showing a bit of hard ignorance. Something that works and is legal and inexpensive is pathetic? No. It is a gift to sufferers. You evidently don't know much about the condition members of this board deal with. Lots of horrid pain? Yep, you get that. The fact that different solutions work for different people? You don't seem to grasp that part. Apology accepted. Now, please refrain from slamming other proven methods of treating CH. igdc started a valid thread about the flu and Ch. You have hijacked that thread. Is that a help for a person suffering? There are plenty of places that would be quite happy to discuss your one topic. You might try posting there.

Bee, I have removed the posts containing info not suitable for an open board. Please do not repeat those postings and videos on a General Board thread. If you have CH, we are here to help. If you have an agenda? We aren't interested.

I have not had an issue with Asthma inhalers affecting my CH one way to the other. I still use Albuterol daily too.

Hugs Brain!!! Keep up the fight. You definitely know how to do that!!! Love you!

Have the dentist give you medication with NO epinephrine in it!!! That is what will kick off your head. He might balk, but let him know what it can do to you!! My dentist fights me on it, so I only go when out of cycle and take Starbucks with me to drink at the first sign of a hit. ATB!

You most certainly are still family here Seigfried! No need to bail on us.