spiny

I agree CHF. They do have to follow the script from the doctor. They just get stuck on 'this is what we do' for COPD patients, not realizing the different needs of the Cluster patient. Once they 'get it' I too have found them to be very helpful.

You can request a D3 blood test yourself, no doctor needed. I think the one here is Lab Corp. You just call and make the appointment and they will tell you how much it costs. You can begin the regimen without a test too. Then get tested a month in. You want to make sure that your D is above 80ng/ml. And check your calcium and PTH too. The regimen is easy to do and really works!!

Nope Jon, the docs' office had the form. On the PC. Fill it out and hit send. It was a standard form from what I saw, but he had never filled out one for a CHer before. So I 'm going to say easy, very easy. I was shocked by the Lincare person I spoke to initially: 'Cluster's? Oh that sucks!!' So, he had some idea. My PCP followed up since my Neuro was on vacation. She is an FNP, read the information sent by the Neuro's office and got the job done overnight! I was very surprised. She had them on the phone to me the day I saw her and then they showed the next day. Miracles do happen!! <3

Today, there is a form for EVERYTHING!! 'You want to take a Tums after dinner? Let me fill out that form for you!' It is truly insane. But, I am thrilled with the results. All the times that I had to go to the welding supply store and get O2, following all the rules regarding transporting, plus pay for it? They are now History. Oh and medical are much lighter too! Aluminium!!

You see those nice Medical O2 tanks on my deck? THEY WERE FREE!!!!! Yes. I saw my Neuro last week and requested a script for O2. He gladly obliged and WE filled out a form. Our local O2 carrier is Lincare. The form has a bunch of questions unrelated to Clusters, so we left those blank. There were a lot of blanks! It stated ' minimum of 15LPM with a non-rebreather mask for 15 minutes, as needed for Cluster Headache'. My delivery came in 24 hours!! They will bring however much I require every week. 'How long does one tank last for you? How many next week?' So, should you need it and you are on Medicare, you can now receive it!! I am in heaven. Also in cycle, but this project makes it SOOOO worth the pain. I am delighted to have this cycle and uncover this stupid mystery we have been wondering about. Thanks to all of those who were able to attend 'Headache on the Hill'!!! WE WON!! Ok, time for a massive HAPPY DANCE. Yes, I will Pin this!

WOW!!! That is gorgeous!!! You have yourself a lovely slice of heaven right there Bosco.

Hey John. You are not alone with diet modification. Many do modify during a cycle and eliminate foods that they feel make their hits worse. They have found a genetic component to Clusters too. I do not recall the name or location of the gene, but at least one is there and perhaps more. I'm all for if it is safe and works for you? GO FOR IT! When or if you begin to add back some carbs and stuff, consider holding back on some foods that others have found to be an issue and add those last! You might find that there are 6 things that are a hard NO for you. But I would NOT mess with success currently. When it is safe? Oh yes, I would. I like some carbs!!!

How lovely for you Bosco!! I am delighted for this update. Every step you take, makes the next easier. Keep walking. Carry your 'stuff', but keep walking. I am so happy for you!!

Agree Jeebs! Bosco needs to check in and update for us. That greenhouse looks like a wonderful hideout for one in need. Add books and a comfy chair and sit a spell 'magic house' in my book!!

Oh, so wonderful to read this Shaun!! May her recovery move along smoothly now. Enjoy your bubbly!

Up and prayers sent up for her today too Shaun. So glad to know of the improvement so that the surgery can move forward!! May todays' surgery be most successful and minimally painful for her.

You can hold mask to face, inhale, shut off O2, Exhale, turn on O2, inhale, repeat. Close those holes when you inhale so you get only the O2. I turn mine off at the tank when resorting to this as it is faster to get back to inhale than closing the regulator flow on the regulator. It saves gas if you don't have the bag. It worked better than a bag that was too small too. Just my experience.

Late on the scene Shaun, but hugs. Love to you buddy.

That would seem logical. Let us know it goes!!

I will interject here that you likely would want to wait at least 2 weeks after starting the D3 Regimen before tapering off any. Having your D checked also would provide vital information and you are probably in the best position to try for that, being a doctor. If it is above 80ng/ml or a good nmol/L reading, then you can taper down. The values for each are different as I am sure that you know. But just compare the two to determine your levels. On the Verap, I removed one pill per week from the time when I least expected a hit. Meaning, I removed the morning one first as I was nocturnal. The nightly dose went last. If you are nocturnal, then I strongly suggest a cup of coffee or an energy drink late in the day. It has helped me a LOT with the standard 8pm hit as it does prevent it coming. ATB!!!

Not trying to be flippant all, but it is funny to see the doctors react to a hit right in front of them. Evidently Shaun's doc had seen one before! I know of some You Tube videos that would help them!

Funny, Jon talks about having a hit in the office to show them the pain that we endure. I would love to have one in front of my Neuro. He is kind and good, but has no idea. Most of our meds are actually hand-me-downs from migraine treatment. Some work, at a different dosage, others work not at all. We are too large of a patient population to be called an Orphan Disease and get special treatment. We don't fit in any box and we get almost NO research into what might help us. So, we ride on the coattails of Migraine. Heck, even our use of MM is migrating to the Migraine community and LSD testing is sort of being taken over by other illnesses since it is in testing now for PTSD, Clusters, and Migraine. Migraine is the one that catches the public eye. I had to take my husband for my second Neuro visit to kill the 'migraine' mission the doc was convinced was the right path. My descriptions mattered not to him. Female = Migraine. After my husband told him he was sick of loosing his wife at 8pm every night, he perked up and listened to me. Yes, they want to peg Migraine and I think it is because it is easier to successfully treat than CH. Most are in over their heads sadly.

Yes, do that!!! Perhaps it will open his ears to what you are saying. Good grief. O2: Tell us how you were instructed to use it please. That makes all the difference in the world. What flow rate, mask type, time, etc. It ALL matters. Do you utilize caffeine for your hits? Energy drinks or coffee? He may be a pain specialist, but that is NOT a Neuro and he likely has no idea regarding Clusters. They are not his forte. Have you read about the D3 Regimen? Cheap, easy, no doc, and good for you.

mit12, Have you tried upping your K2? That might bring the calcium down some so that you could up the D3. MIght be worth a shot for 3-6 months and see where you are for all of them. Jimmy, I an not aware of any shortages. But that does not mean that there is not one!

Hey TTF, This is the first year that I have avoided the sun at all costs. And it has put me in the position that you are now. I have never had a cycle in summer. but now here I am. Glare...... One hit the first night, then made 4 for the second night. O2 is working great, but I am tired of it already, so I definitely feel the pain and all that mess. My D3 is now upped too! This cycle has been going for over a week now. Soon, I will be P.F. I hope and you too!!!! Hang in there and we will get better in short order!!

Currently. 1:28pm, there are 75 users online. One member - ME!! Those are the Bots that troll for information and then roll off with it. Also why we try to keep some topics on the Members Only boards. We do get some times when the board goes pretty quiet for a few weeks then gets really busy again. I take the calm as people are doing better and enjoying the day. Happy Friday Bosco!!

Yes, you can survive!! We all wish that no one had gone through this disease and wish that it did not exist. But, in our wishing there is also the wish to meet others who actually know our pain and want to know how we get through our days and nights. That alone can help us get through the tough times a bit easier. We have each other to learn from and lean on if needed. Like your O2, we are friends, just not as close. I truly understand your regret. Been there and done that, you know? But it did not end my world. There is HOPE and there is HELP!! You have taken a step and reached out to a great group of people who have been in the same boat and have held the same paddle that you are using now. We hang together to help each other. Get some relief from the suggestions you have been given. Private message anyone and likely you will get a personal response. Yes, you are half a world away, but we Clusterheads keep weird hours!! Hang in there! We have a lot of suggestions for killing a hit and silly things that we have done and found help in doing them. Like a face plant in snow, a screaming hot shower followed by ice cold finish. Yea, we are a creative bunch here.

Hi Moona. Ouch. It hurts to read this. I was on Verap too and my dentist talked me out of taking it one summer. It never worked again at the levels my body could handle, so I feel your misery to some degree. It is also how I arrived at this site some years ago. Not doing a taper of the Pred was irresponsible, I think. Backing up and starting over due to his/her mistake is baffling to me. Insurance messing with you on refill dates is way too common these days too!! Not like it was Oxy, right? The Pred will normally stop the pain until it is tapered down to your personal cutoff point. Meaning that we are all different. For me, below 20mg/day and they return. Others have different amounts that allow the CH to blast back in. The Pred is supposed to be used as a 'bridge' to get you out of pain while the Verap builds up in your system. It sounds like it was prescribed correctly the second go around, but it may be that the damage was done in the relief department. Most take over 320/day for relief, with some going up to over 900mg/day. Verap is not great for your body and many doc's won't give the higher dose that many require. And at 240 or 320/day is not high enough to work for some. It lowers your blood pressure and that needs to be monitored. So, that is a limiting factor on how much you can take too. You have O2 and abort with that now, right? It is still your best friend. Add in some caffeine and you can abort almost all of your hits. Of course that is not the final result any of us want, we want to be pain free. Next up in the ease of application is the D3 Regimen. I will attach the one that I take. It was the first iteration of the protocol. Here is the link: https://vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 These vitamins have an amazing track record for many of us. It will slow the ramp up of pain and lower the max pain level reached too. That alone is worth swallowing a few pills a day. Ok, more than a few, but they are vitamins and good for you. Many Chers have low D3 levels. It should be 80 - 100mg/ml when you get blood work. It is suggested to get your D levels checked before or soon after starting the D3 Regimen. I see that CHF has attached the later version of the Regimen. It has more stuff in it and many do go that route. I think that you will feel better and more optimistic if you taper off the meds - Pred and Verap - and run with the D3, O2, some caffeine, and perhaps toss in some ginger for shadows if needed. It really works for many. If it does not put you in a pain free position, there are other things to add that won't mess with your body like what you are currently taking. You can start it right away too. No doctor needed. You can even order the D3 test yourself in the states. All the best and hang in there. You are among friends here and we have been in your shoes too. Kinda nice for a Clusterhead.

I had this. It was bent to the left at a ninety degree angle. They operated. That side would bleed like a prize fighters at the least provocation after they fixed it. Like if I was stick welding in class, it would just start to run like the worst cold in the world, but it was blood. I had to wear a mask while over the heat. There were a couple of other things that would get that faucet running too. It was a mess for years, but my regular sinus infections were a thing of the past with the fix. That is why I agreed to it in the first place and was hoping that those infections were the cause of my CH of course. Of course the surgeon said 'Yes, this could help that too!' It did help with the clogging on that side to some extent. It did NOTHING for my CH. They wanted me to go back in for another 'ramrod' job to clear out all the blood that is trapped from the bleeds several years later and I said 'No!' in no uncertain terms. It was a most unpleasant surgery and I was not going through it again so that those sinuses were no longer opaque from the blood in them.

Most of our Serotonin is made in the intestines. So, yes, there is that part of the puzzle. Busting aims to fill up the serotonin receptors in our brains. Connection? I agree to some degree. No proof, but it has always made me wonder.