Mum3115

Hope it’s over for you very soon!

Hi everyone - my son's cycle looks like this: 1 hit per week for first 4 weeks, then dailies for 3 weeks, and now looks like 1 hit every 3 days. He's been on the D3 regimen for 3 weeks now (finished loading dose) so I am wondering if his cycle is actually ending? or is the D3 just reducing frequency? His hits are still pretty bad at a KIP 8. Anyone else have similar experiences? How do your cycles end? Thanks! Mom

Thank you for the clarity CHFather!

Can you take Tylenol or Advil for slapbacks? Busted with seeds last night - this morning one-sided headache, doesn't feel like a cluster. Is Tyelonol ok?

Just for the record - this was a one day occurrence and resolved. Most likely nothing to do with the regime in case anyone is wondering....:)

Thanks Racer - great information! I will let you know how it goes!

Thanks! I already bought him the clusterkit mask and we will arrange for the oxygen first thing in the morning. Hopefully they will set us up and teach us everything we need to know.

You are 100% correct CHFather. I do indeed feel blessed in so many ways - that my son had a fast diagnosis and options for treatment. Then to have this community as a support - I feel blessed. So so blessed.

How’s he doing? He’s on day 6 of the vitamin D loading dose and has had 2 kip 8 headaches. however we still think we need to give it time.

I only became a member on Clusterbusters for a couple of weeks, but I cannot tell you how important it has been to be a part of this community. Today I took my son to his first appointment with a neurologist specializing in headaches. Quiet, soft spoken and required a little probing from our end but we left with hope. I was so delighted that he actually recommended Clusterbusters as a resource for help. He shared all the options we had to us, wrote a script for O2 with no hesitation, imitrex, and spoke to us about busting with seeds and mushrooms too. He also spoke with great optimism about Aimovig which just got approved in Canada. He said he’s had cluster patients on it during trial with great success! There is hope!! I have to thank CHFather, Batch, and Clusterheadsurvivor for all their support and guidance. I don’t know what I would do without this forum and their support.

Such a great help and resource for newbies. Several PMs back and forth and I’ve gained a wealth of information on this brutal condition!

Reading your post has given me some hope. My son has just started. He’s 21. Did you CH just stop? What treatment worked best for you? Please help with any advice?

Yes, he's going to do that today. Should give us some answers. How is the D3 regime working for you?

My son just started the Vitamin D3 regime last week (15,000 IU D3 plus all the co-factors). Looks like he's just starting a cluster. This morning he woke up with leg/bone pain. Is this a normal reaction? He hasn't had his blood serum test yet - getting that tomorrow.