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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.

...your other family is pulling for you and yours Shaun!

Such a relief to hear this phase was such a success. Big kudos to the surgeon(s) and medical team - it sounds like she is in very capable hands!

Awesome news Shaun! So glad she got through the surgery!!!

GREAT NEWS my daughter's operation was a success. Really long recovery starts from know bless her . Still not awake yet could take a bit of time for that to happen . She was under really deep sudation for 10 day but she could also wake tomorrow . 1 more operation on her shoulder but as the surgeon said that can wait

Of course CHfather, sharing is caring According to the international headache society (3.2 Paroxysmal hemicrania - ICHD-3) PH can only be established when there is an absolute positive result on Indometacine. Let me explain why we (me and my neuro) are exploring this rare syndrome. Over the last two years I have turned into chronic, there was not a period longer than a month that I was in remission. The odd thing about this remission period of a month is, that literature does not state if the remission period is without or with medication. I have to say that even when there were weeks without attacks, I still used my preventative medicines; verapamil 720mg, sandomigran 3mg, naratriptan 2,5mg, D3 and the usual abortives O2 and sumatriptan. On occasions when there was too much pain and very frequent attacks I used prednisone. The prednisone tempered the severity and number of attacks, but not to zero. Back to my situation on why I went the Indometacine route. Beginning of this year the number of attacks was increasing rapidly to an average 200+ a month. On a few days I forgot to take my naratriptan, which let to almost 20 attacks that day. On discussing this with my neuro, we came to the conclusion that if I would not have taken my normal preventative medicines, the number of daily attacks would increase drastically to 20 or more. Another conclusion was that the efficacy of my meds is declining, for example when in the past a 6mg sumatriptan injection gave me 5 to 6 safe hours, no attack could break through, it now has decreased to max 2 hours. The attacks I have are not all that severe, but they are numerous, hence my situation could be marked as PH according to the ICHD-3. Since PH is quite rare and my neuro does not have any reference patients currently, we embarked on doing a little experiment in adding Indometacine to my regular medicines. According to literature if one has PH the attacks should dissolve over time using Indometacine. The minimum level where people can positively respond on Indo is 150mg. This level needs to be build up gradually starting with 25mg (plus a stomach protection) and every 4th day increased by 25mg. On 150mg I had no response so we continued to 275mg (almost at its limit of 300mg). Indometacine takes an hour to start working after intake and lasts for about 6 to 7 hours. For me there needs to be a split in doses and this is very strict. Cause in the morning I have barely any attacks, I take the first 125mg at 13:00 and the second one 150mg at 19:00, just to make sure I can counter the attacks I have in the afternoon which continue into the night. Also, I figured out that the Indo is better taken after lunch and dinner, not before or during, but this may vary per person. I am taking for granted the side effects of Indo, in my case inability to poo for days, and more importantly an hour after the Indo intake I really get tired. In the beginning of my Indo trail, I used omeprozol to protect my stomach as a remedy for the obstipation, but to no avail, so nowadays I do not use any stomach protection. Because of the gradual build it took me quite some time to get to the level where I can now say that the number of attacks has dropped from 10 to 1 or 2 a day. But. The clusterfuck about this is that I do not know whether I am slowly going into remission, end of cycle, or that I actually have a positive response to the Indo. The only way to find out is the next phase, lowering my verapamil and hope the Indo can hold the beast at bay. Not particularly looking forward to it, but it is the only way to prove if I have PH or not. Hope this sheds some light, always open to share more info and experiences. All the best

Thanks, will post new developments and results in due time. I sometimes follow subjects where there is a mention of triptan overuse and the possibility of severe rebounds. That is not the case with me and i think it varies per person what the effect is of triptan use. I am a big guy with quite some weight and because of that I can use triptans more and more often, compared to a person with a lower body mass. All the best

Thank you so much for this full and clear information. I'm so happy that your headache situation is so much better now, and I hope you learn all that you need to know from your next phase of testing, without too much unpleasantness. It seems that naratriptan is an essential part of your preventive protocol. Of course, I find that interesting because we hear so much about triptan overuse headaches. Wishing you the best as you go forward!!!

Sounds like the road is still long but I am so happy to hear some improvement! And yea what Bejeeber said I said!

Daughter doing so much better . Off all sedation hoping she wakes soon . Still got this massive op on her pelvis and hip which is going ahead tomorrow . Thanks for all you love and prayers

Sorry your having to deal with this problem. My Ch's have returned too after about 3 years of relief. I found relief in playing soft music in the background while sleeping. It seemed to help keep my timing while I sleep. Before my dreams were scattered and would repeat the same segments over and over. They would always end in me waking up with a horrible CH. The music helped to deal mostly with the depression in the beginning, but seemed to help with organizing my dreams. Maybe it helped my timing systems while i sleep, not sure but I was glad my CH's were less severe and less frequent.

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.