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Hello Friends, How would you feel spending several years on a CH forum, convinced you have CH but then it turns out you have something else ? Well that is what happened with me today. Some of you maybe remember my earlier posts where I was always talking about my kind of a-typical CH that maybe looked a bit like CH but was a different beast all together. Today I came back from my new headache specialist (the best I ever encountered) and after going over my headache diary and especially my indomethacin test responses it turns out I have Chronical Paroxymal Hemicrania or CPH. And all the "shadows" I had is all migraine, as the indomethacin do not respond on that (otherwise it could have been hemicrania continua). Disadvantage of this is that, if they change my diagnosis, I will loose my compensation for oxygen (something that served me so well the past years) so I will maybe have to pay it myself. Apart from the indocin there is not much that can be done. I consider to try the Vit D regimen again but let it fine-tune by Batch so it has maybe a chance of working and I am glad to be a test case for CPH Is there anyone else here on the forum with CPH ? If yes, it would be nice to know these people as CPH is much more rarer than CH. Anyway it feels kind of weird... having always felt very good with this community but what I thought what bound us (CH) is now not there anymore. But as CPH is often called, CH's "ugly little sister" I am sure I am still a very welcome part of the family here. All the best ! siegfried

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

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.

I take 240 mg on a regular basis for high blood pressure. When I am in a cycle my dr. bumps it up to 240 twice a day. this alone helps a lot. I also do the whole D3 Reg. that being said Even though I know I am still in a cycle. the hits are manageable. Good Luck. Keep us posted.

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.

@Siegfried hang in here with us. So sorry you have such difficult times. We'll all get through. PS: Busting worked for my chronic CH.

I don't know about chronic because I am episodic. So any answer I would give would be pure speculation.

It was great, would be cool to do more.

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

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.

Thank you CHfather, appreciated more than I can express. I will come to this post on the days I need to be reminded. I will contribute to this forum again just as soon as I am able. In the meantime I'd like to encourage other CHers to share & contribute.

Out of complete desperation, I tried Ajovy for my cluster headaches this past January (2020), upon the recommendation of my neurologist. For me, it was a godsend. It immediately ended my cluster cycle.

thanks @Tony Only. if you don’t mind, i can print this page, highlight the ch and leave it in his mailbox, if i can do so. he lives a few miles from me. geographically-speaking.

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

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