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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.

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....

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.

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

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