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Interesting week, wanted to ship me off to a nursing home late last week, friends whisked us out of here. Helps he is an atty & has been quadriplegic for over 20yrs. Back home now, was told I'd never dance again. So, I blew PT away yesterday. Today was the last day of the top portion of my custom fitted body cast. Still have the bottom, braces on both hands, various durable medical equipment & at least one more major surgery followed by more intense PT. My spirits are high & I remain Chronic Cluster Headache pain free. Love & pain free wishes to all!

During this time of distancing, we'd like to offer more to keep us together. Beginning next week and continuing based on demand, please join us on Zoom for one hour support group discussions moderated by Mr. Bob Wold. You will need to sign up here and we will send you a link. Please do not forget to include your email. https://www.signupgenius.com/go/9040b49a8ac23a4ff2-clusterbusters I know this is a rough time for everyone and it's even tougher for those of us that had serious health issues before the lockdown's made things even harder. There has been a noticeable spike in people talking about giving up and a spike in people entering serious cluster cycles that weren't expected. Some of this may be attributed to this crazy weather. Some may be from the added stress and anxiety of these times we live in. If you have zoom set up (or want to set it up) and want to chat with others with clusters, and see some faces, let's talk. Bob

Thanks for asking!! I'm coming along. The pain is pretty bad. I continue to resist meds for it. Last night I decided I needed to go for a drive (tough pain day). I surprised myself. I drove around for a couple of hours with my music playing loudly. Periodically punching my accelerator. Few on the roads I traveled. I know those roads & their nuances well enough to safely fly. It felt good to drive, it felt great to fly! First time I've driven (or been in my car) since the surgery. I'll tell my PT guy & nurses when they come Monday, hoping they don't beat me to a pulp

Hi Tony, That can indeed be a possibility. All these different headache types react on each other and I agree it is very difficult to differentiate. I heard of women who have CH and migraine, they sometimes can not tell the difference which one is active at which moment. And that is also my problem. Oxygen in my case works very well for migraine if I am early enough. And as a migraine attack is always a trigger for a round of PH attacks, so it also indirectly works as a preventive for PH. I can abort 80 % of my migraine attacks with oxygen. That is why my triptan usage is very low compared to the number of attacks I have per month. But once the PH started, you are right the oxygen is not working anymore. Simply because the attacks are too short. Most attacks are average 7-12 minutes. In a very rare case, it can last 20 min. That is why oxygen is more or less useless as by the time you are on the oxygen and start breathing, 10 min have already passed and the attack stops by itself. But oxygen takes the sharp edges off the attacks and bring it down from 9 to 5-6. So it is a bit useful somehow. But during the attacks I am so busy trying to stand the pain that I am not able to focus on the oxygen. Indomethacin was not fully conclusive at 150 mg (some attacks still came through) but then they increased it to 225 mg. Then the response was absolute. There was not any symptom left of these attacks and all what was left was classic migraine that went easy away with a zomig pill. Now, 225 mg is a too high doses to take permanently (indocin is not the kind of med to take permanently anyway) and what I do now is if I feel it coming I start with 100 mg indocin and then 50 mg every 8 hours for around 3 days. Mostly these PH rounds take around 3 days with on average 20-30 attacks per day. So what I try is to cover this with indomethacin which is working well now. Indocin starts to work already in 1-2 hours and stop the attacks completely. I asked about CH, if I can still have it but my neurologist told me that attacks that last on average 10 min with +20 per day in the active period and fully indocin responsive can not be labeled as CH. I agree with this. But we will try to do some administrative trick to keep the compensation for my oxygen, which is exactly what you mention. Having 3 conditions so the CH diagnoses is still valid, and thus my right for oxygen compensation. Indocin by the way is also not that cheap. I pay every time 16 € for 60 pills. That is good for around 1,5 months. Thanks and Best Regards ! siegfried

https://jamanetwork.com/journals/jama/fullarticle/185035 Note that O2 is also listed as a #1 treatment for CH in every article or physician's guide to CH treatment (along with triptan injections and nasal sprays).

...absolutely the above....denying O2 prescribed by your physician is practicing w/o a license.....tell 'em you know they are doing that...get your Doc (hopefully a headache specialist) good and pissed and writing a letter on your behalf (same for triptans BTW)...involve your company HR if you are working, and the insurance broker who sold the policy....they have more pull than you...be professional but persistent from these multiple angles. went thru this at least 7 times with ins companies...always got what I needed in the end.....they COUNT on folks giving up...don't be one of those..... edited to add: worth asking your physician to include the word "intractable" in the cluster headache diagnosis discussion...according to one broker...this is a key word. also important that the correct diagnosis codes included in any communication with insurance....am hoping someone can post these as I cannot find at the moment....

Appeal the denial by calling the insurance co. and request a doctor to appeal on your behalf. Sending the peer reviewed O2 effectiveness studies ( links found by searching for O2 on this site) for your doctor to refer to when appealing the denial will be helpful. This process of persistence took weeks with successful results and Apria finally delivered O2 to my home to be able to battle my upcoming episode.

Hi Jonathan, thank you for your kind workds. Our training lasts for 12 months, it's built around everyone's own life story and the medical condition and recovery from it is in the center of this story - to help others who are still struggling with same issue. We practise presenting our life's story many times, and possibility of telling it in different places and situations with different length. Even a course of performing arts is included ! The best teacher is doing the work when we graduate though. We collaborate with each other a lot but as an EbE we do not speak out (=advice) about treatments since we are not doctors. Our job is to tell our personal experience living with the condition and not advice about possible treatments, when we work at a hospital. Understandable course of conduct but also a balancing act for me, since I am also a patient, peer support, sometimes a friend, member of an association etc. And treatments that saved my life are illegal here but also part of my life's story. I think this kind of training and use of us patients in the heathcare is benificial for everyone, especially in cluster headache not well known at all.

I have heard that Brain on fire has been going through some rough times lately, involving surgeries, PT, and a challenging recovery. This community has meant a lot to BOF, and BOF has provided a lot in return. Best wishes from me, BOF. Get well soon and rejoin us when you can.

Brain how the heck are you doing?

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

@Siegfried im glad you finally found some answers. Must be a relief. I am frustrated because I tried indomethacin for a very short time. Not enough time to see any results. It made me so sick and dizzy. Any other neuro I’ve seen has dismissed my suggestion to try it again and play with the dosage a bit. I think I could see some positive results with it. My history; shaddow like pain all day every day since last July. Has been improving with 50 mg of metoprolol. Last 2 days I’ve been having orbital pain (not sure if it is stress related). Sometimes the pain turns into a severe throbbing on the other side of my head behind my eye. Still going strong with metoprolol. It’s not giving me any side effects so I might as well keep at it. I hope you have continued positive results. Kat

I really hope this works out similar to the way Peer Support in the Mental Health field did. Paid full time positions (I was already employed, on the speakers bureau & taught the curriculum).

Siegfried, Why does your neuro think you can't have CH, CPH and migraine ? Or do you think that ? We have encountered so many cluster headache patients (all female) who also have CPH in our finnish FB group that we created a sub-group for them. Some may have even more than three headache disorders going on. From what I have read it looks like very few are able to tell which disorders are happening simultaneously but I think pure CPH does not respond well to oxygen. I might be wrong though ! But I'm thinking if you get cluster-like pain in future while on indomethacin it might be CH partly responsive after all. You're more than welcome - you're not going anywhere I'm happy you found clarity and wish you would not have to suffer at all.

Siegfried quick question? What effect did busting have on clusters ugly sister?

If you do this again, I might try to join. Please let us know if this becomes an option down the road. Thanks.

This is such a great idea. I hope people that need it are making use of the ability to connect with our CH family. Those with CH really need connection and support. Cheers All! J

Keep well Brian !

All the best to BOF ! PF wishes to all forum users in these challenging times.

Oh, absolutely, please do if you can do that !

I thought this was worth a smile or two. https://www.youtube.com/watch?v=1L0yjF_-hQQ&feature=youtu.be

No. Tanks get refilled and reused, although when a supplier brings you more O2, they bring you a different tank and take the one you have back to be refilled and eventually given to someone else. Or, if your question is different -- you will use the same tank for multiple aborts. Tanks come in different sizes, holding different amounts of oxygen. The number of uses depends on many factors, including how much O2 is in the tank and how fast you use the O2 that's in the tank (this is called the "flow rate" and it is measured in liters per minute). With a really, really big tank, a person might get five hours of use. With the smaller tank (called an E tank), a person might get something like 30 minutes.

sn0wh0p, I would ask that you try to keep posts to the topic of CH or helping those with CH. I appreciate your passion for experiences you've had, but there are plenty of websites for those discussions. Shroomery.org DMTNexus.com etc etc. I really don't want to limit your access, or be forced to edit your posts. Trying to enjoy or at least deal with taking our medicine is important, but it's clear some of your posts aren't related to CH and those posts really need to be put on those other boards. Cheers, J

Thanks guys!! She's now hit a week after prednisone with no CH. She flew yesterday to Denver (high altitude) with no headaches on the plane, and no headaches overnight. I know you can never say never with these but really hoping the cycle is done.

Jon, Thank you for the kind words. I've been in touch with the Principal Investigator for the vitamin D3 migraine prophylaxis RCT. He and his team are working the final manuscript for publication. Once that's out of the way and they can find the funding, a follow-on RCT using a vitamin D3 physiological dose of 10,000 IU/day is on their list of things to do. There's a good reason why the mAb RCTs can't achieve better efficacy. When you consider the site of action are neurons within the brain that produce calcitonin gene-related peptide (CGRP) and mechanism of action they espouse is neutralization of CGRP, the first step in these two processes is getting the mAb into the brain. That's a very real problem Big Pharma has yet to solve. The maximum opening size through the tightly packed endothelial cells forming the blood brain barrier (BBB) is a molecular mass of 400 Da (Daltons). The mAbs have a molecular mass of 150 kDa (150,000 Da)... 375 times larger than openings through the BBB. If the mAbs cannot pass through the BBB to enter neurons throughout the brain, neutralizing CGRP within these neurons is a non-starter. My guess is the reduction in migraine days made possible with mAbs is due to reducing serum CGRP. For reference, vitamin D3 has a molecular mass of 385 Da so passes readily through the BBB and into neurons where it's hydroxylated by enzymes to 1,25(OH)2D3, the genetically active vitamin D3 metabolite. It in turn attaches to Vitamin D Receptors (VDR) at the genetic layer initiating the genetic expression that down-regulates CGRP expression... and in the process, prevents our CH and MH. Better living through chemistry... and molecular biology... That's my SWAG... and I'll stick with it until a better mechanism of action is found. Take care, V/R, Batch