BoscoPiko

Hi Luis, Sorry the cluster bunny is back. I don't have much info on gabby other than to say it did not work for me. All it did was make me super sleepy while the beast raged on. You never know though, what doesn't work for one may work for another... I do recall someone on here (I think it was @Bejeeber) mentioning a study that showed an increase in suicidal tendency's not that I think you would have an issue with that especially with just trying it out. By chance have you tried the "Full Monty" D3 reg? I had to switch over from the normal regimen a while back due to allergies and it has really helped.

Hey there CE, The pain can certainly be isolating which can lend a helping hand to allow loneliness to creep in. Having supportive family like you do is so important (as you realize). Lot's of us on here to talk with so no need to allow yourself to feel so lonely prior to popping on here. Sometime just reading on here and talking to others that understand what your going through can really help keep the spirts lifted. I see by this comment that you have a wonderful sense of humor Trust me laughing at this sh*t show can be a saving grace of sorts. I hope you get your o2 and find your way out of this cycle sooner than later.

I would say start now on the loading dose and test later as a majority of the regimen is pretty gosh darn good for all of us and not considered harmful. (This is just me). I have a tendency to air on the side of "please give me relief " verses the clinical approach. Anyhow as funtimes suggests you should have levels checked but if it were ME I would start sooner than later.

LOL Jeeb.. I caught that..

Agree with @Shaun brearleybut will add the D3 Regimen as well.

Was it the register your journey one?

You don't really need to actually talk with anyone. All the data you could want is here on this one awsome sauce site!

Took it last week. Agree that we all should take it. A nudge is a nudge

He was! We were both just so happy that she was finally willing to try. We've taken her to the lake several times since she was healed up but she wouldn't even get out of the car unless we made her and wouldn't touch the water We just went again today and she loved it! Our biggest goal is her remaining quality of life. She deserves a good ending as she has brought us so much happiness! I know you know what I mean @Shaun brearleybeings your a double dog dad

It's just a "help um up" harness". She swam like back in the old days but you can see dad never left her side

I'm excited so I figured I would give a little update on my Abby girl. It's been a long half a year since her surgery with lots of highs and lows. She's an old gal so surgery was sketchy to begin with. Options were non existent seeing the tendon was severed, so surgery it was. She pulled through and got stronger with each day, started to stand and walk about quite well albeit with an orthopedic boot. She has adjusted to the boot very well which is a good thing as we recently learned that she will be in it permanently. They fixed the area that was severed but the rest of the tendon was stretched to badly to allow her to be without the boot for support. She is the goodest of good girls! Today she trusted herself to do her favorite thing of all with the boot on.. God is good!

Well it sounds like they gave you an oxygenator ( a machine that pulls in outside air not pure o2 ) 10lpm wont help a cluster head out much and I don't know that you can retrofit this machine).. Maybe some of the more versed on here know if it's possible. I suppose it's better than noda but not real sure how much. Maybe ask your Doc for an 02 tank script. Seems possible if they scripted you a machine? Anyhow Lloyd maybe tell us a bit more about yourself. What you take as a prevent, what you were diagnosed with what you have done in the past to skirt the beast etc. You will need pure 02 with the ability/regulator to increase 02 to a minimum of 15 to 20 LPM. Lots of resources on here for that. Sorry you are not well! Respond when you can with better detail.

Thanks Shaun!!

Well I think it's official. I went from no more than 4 months off to a full YEAR!!! I know things change and the body is good at becoming immune but a win is a win and I feel like a winner! I'm even making chicken for dinner!

Yes, here we are and so far so good! I feel good and am void of any warning signs... I think I finally made it a full year (never achieved this in all my CH life)

Oh and hi to my amazing friend @Shaun brearley who let's me vacation bicarously through picks of his amazing home land job. Stinker gets to tote folks around to some of the most beautiful places in the world as a job.. gets paid for it! Jelly!

Your rt @Bejeeber. Jinks is silly but I'm still learning to navigate..You are a good friend and I appreciate you! I'm making a pot roast (it's taking forever) and getting ready for a movie with my best friend.. no thoughts about Jinks (thanks to you and all the awsome sauce folks on here)..Beastcapade free! I'll say my prayers!

Thanks @Shaun brearleyyour 2 kind. Oddly enough after my last response to @Bejeeber I got a notice from Kaiser and Sutter (my insurance plan providers) telling me that my script would no longer be covered by my insurance and that my script was not being canceled but I would have to foot the bill as my BMI (body mass index) suddenly did not qualify for coverage. As a consolation they advised me where I could have my script filled at my own cost of $1k per 30 day supply. I'm not as upset as I thought I would be as I've learned to have a backup plan for all of these pharma/insurance provider shenanigan's. I suppose I am just bummed that I can't experiment a bit longer. I've had such great success with adhering to some of the methods and means provided to me via this site that I don't care as much about the denial of coverage. (They can go suck a cluster bunny egg, maybe.. hopefully choke on it 2)! Anyhow I am nearing the one year mark ATTACK FREE! I pray I am not jinxing myself but at the same time I am 2 grateful not to share the news! My last attack (only one mind you and not a cycle) was last year on July 3rd. I would be lying if I said I wasn't scared. At the same time my heart swells with pride over the help and much needed support that I have received no where other than here! All of you are the very best!!!! Happy 4th!

LOL.. Well my train of through is the lowering of blood sugar? Not sure if that makes a difference with CH or not. And yea I just realized after reading your response that the name is sorta gross

Not sure if this is important or not but figured I would speak to it. Even though my weight is in line, my body tends to not produce enough insulin. I am not diabetic or anything of that nature so it has thrown a few Dr. for a loop. I was heavy for my size at one time but am now 125. Then 180 (big for a 5 six chick) anyhow two months ago I was started on a semaglutide. My stomach rejected it pretty harshly and I started to question the script. I decided to do an experiment. One day on, and one day off. All of my days off resulted in serious shadows. This is very preliminary/conceptual and I've yet to have a definitive response to it. I'm just wondering if anyone else with CH has an issue with insulin creation (non diabetic) that is.

All my best juju, strongest prayers and mend up soon thoughts sent your way!

I personally would keep loading for at least 12 to 14 days depending on how your head is feeling. The one a day verses 5/6 is great improvement and very similar to my own experience when starting on the D. I first started getting less hits per day and then the hits that remained here and there were very muted in comparison. I loaded with 100,000 IU/day along with all co-factors for 14/days. This is just what I myself would do and is not necessarily the recommended protocol. Maybe the amazing Batch @xxx will give some advice.

Wow, closest cluster head to myself that I know of (I'm in El Dorado Hills). Yes Sac and El Do are awfully hot during summer and at times I have to take breaks from it if trying to do outdoors stuff as it can help along a banger...

Hi Jimmy, The 240 a day is most likely to low to help much. I am on 480 and take two in the am and two in the pm but I usually have day time attacks. Many on here have mentioned that the rapid release is more effective than the extended. If you are on the ER you may want to talk to your doctor about swapping to RR as it seems like that may be more effective taken in the evening to keep the night attacks at bay.