Hello!

Old member here!

My husband, 11 year episodic, is having a hard time getting rid of his latest cluster.

His clusters have changed over the years. He started having cycles twice a year. He went into remission for a year, then started having one cycle a year (either fall or spring) and it turned nocturnal. His latest cluster started in March this year and hasn't been able to break it.

He's been on the vitamin D3 regimen for years and we think this is how he went into remission years ago.

Things are different this year and I have a few ideas of what's going on.

He got an upper respiratory infection in March. We thought it was covid19 but it wasn't. It was probably the flu and it left him with a nasty lingering cough. He took antibiotics, prednisone, and a nasal spray. It took weeks to get rid of it. His cluster started around this time.

Stress from job since covid19. And even though things are good,t here's a few changes in income and schedule.

Allergies. His allergies are terrible this year. He's using fluticasone nasal spray almost daily, and allegra as well.

He uses O2 at home. He has the opti mask. He's also been busting for the past 5 years. Busting hasn't stopped a cycle but it has made them manageable.

Neuro prescribed Emgality. He took the first dose (3 shots at once) Sept 20th. No change whatsoever. I'm not even sure if he should try the next dose.

Nothing has stopped this cluster since March and he's exhausted. He's nocturnal and gets woken up every time he sleeps. Sometimes O2 hurts more and he has to stop. Energy drinks help but they take time to work if he wakes up with a kip 6-7-8.

He's not interested in other pharmaceutical treatments since he's tried a bunch and didn't work.

I'm worried he's turning chronic.

I've read a post from Batch about increasing the vitamin d3 to 50,000 and taking benadryl every 4 hours. Hopefully he wants to try and see if that helps.

If anyone has any advise or has any idea of what could be happening please let me know!!

Thank you for your time. Pain free wishes for all of you!!

pagwilliams.

Hi there and welcome.

We love supporters here, so thank you.

How much D3 is he currently taking, and do you know what his 25(OH)D blood results are.

Regarding the Benadryl, 50mg before bed for 7-10 days is what I take when the spring/autumn allergies wake the beast. Makes you very drowsy, so no driving for 8 hours, but helps with a decent night’s sleep.

I am chronic and the D3 Regimen has saved my life, but the Benadryl certainly helps too, when needed.

Best,

Peter.

Thank you Peter!

My husband has been taking 10,000 iu for a long time. Since nothing is breaking this cluster he increased the amount to 15,000. He needs his levels checked again. They were normal for a while.

I've been reading about adding benadryl and upping the vitamin D3. Hopefully that'll break this cycle!!!

Thank you for the info!

What Peter Just said.

Mark