BoscoPiko

So my husband and I are both down with the flu/Covid. My question is if I take 10,000 IU a day with an occasional sublingual boost once a week of about 15/20,000 IU should I increase a bit knowing the flu depletes the D? I was sick not 2 long ago so I boosted a bit then 2 but this sickness is so bad that I could hardly walk yesterday as my entire body hurt including my joints. As for my husband he has been in bed all day with a 102 fever. We both take zinc and quercetin and I gave him a 50,000 IU D3 as he has not been taking the D. I had what most people would consider a bad headache and fever yesterday but it has subsided the worst of this seems to be bad body ache .. any info on if I should increase even more would be appreciated!

Hi Sue, I get a good amount of riding in when out of cycle about 3 days a week. When in cycle not so much. It is a good therapy..

I deserved that one LOL...

My goodness am I so far behind the urban dictionary and the use of acronyms that I can't understand much anymore.. jeesh I'm old...

I have this fear and haven't flown since CH. I received some pretty cool info when I posted about it (flying). Here is a quick overview of the info I received: 1. Make sure you have abortive meds in your carry on (imatrex injections, Sumatriptan tablets, nasal spray abortive in hand if you don't inject. 2. Have caffeine tablets at the ready and or 5 hour energy, red bull or a monster if the hostist can't serve black strong coffee (most air line coffee is weak) 3. Try and fly when out of cycle if possible 4. Make arrangements for O2 at the destination you will be going to. 5. Take an abortive prior to boarding 6. Cross your heart and don't hope to die 7. Make sure to tell all of us cluster heads how you fare. Ok ok I hope none but the best for you even if I sound like a joker. I have to go to a wedding here soon and um well I'm terrified as it's when I will be in cycle. I'm not going to fly but the terrain (elevation) terrifies me. Here's to your success!!

I look back often to the first day I felt the pain from CH. I had no clue as to what was going on. I remember the severe pain pulsating in my rt temple shocking me over and over again, going pale and sweating because of the new level of pain I had never experienced before. I remember the phone calls to the ER, the doctors, the shite show in its entirety. I'm still scared but nothing like what I was. I've turned or have tried to turn my experience with this mess into something to grow from (not sure I've grown a darn bit) but I know I move through each day a bit better than the one prior. The anxt not as bad, the fear not as bitter the continuation of remembering " I can't stop this but it will stop" has been so important to my mental health. Being lost without a clue is so hard. Having folks familiar with your own experience priceless! I suppose to wrap this rant up I should say that I don't believe any one medication or supplement regimen will work forever it is more of what @jon019 mentioned in the way that CH is ever evolving and we must evolve with it in new methods to fight this battle.. rant over..

Well said Jon.

This is something to hope for Jon. The other side of your post that seems scary is the erratic part. I like knowing when I'm going to hell for a stent (don't know exactly why) maybe it's because I'm a bit OCD in that way or maybe it's because I can mentally prepare? I've heard so much about aging out and I'm unsure if I can trust that (not that you are inferring as much. I don't want to give myself false hope as I am somewhat new to CH and received a diagnosis fairly quick with comparison to most (I was a tyrant thinking I would surely die from the hits). I am 42 and started having CH at 38 so as much as I would love to believe that maybe in my 50es I might go into remission I don't want to set myself up if that makes any sense? Anyhow I have been blessed by finding this site and all the amazing people on her so I take that as a win!

Sorry Spiny! Thank you for responding in such depth though!!

Wow! That's amazing... Do you recall if you were doing anything diffrent during that break? Even if you don’t that's just out right amazing but on the other hand I assume you were devastated by the return.. I suppose if I take anything away from this it would be that miracle breaks for suffering folks can happen and to be very skeptical about being cured and or about the shite show being over. Thanks for sharing this tid bit about yourself.

Awsome response! Agree 100%

One last thing peer reviewd means just that. A peer in the same field has reviewed it and given it a stamp of their approval so peer review means little not a ton to me.. science is trial and error, what did this do? What was the outcome, how could this have been better, did it have the same effect on all or on just some? Adverse reactions had? How many and what was the difference between those affected and those not. Science is to question. I love the effort you put forth to support this community!

Bohm, I don't disagree with you. Move it forward and do what you do. Every effort to help even one is worth it!

I suppose if it helps even one cluster head it's worth a shot. It is worth questioning why this was only tried on one individual and why when it worked for him was it not tried in a study on multiple CH sufferers? The writeup is also a bit old so I can't help but questioning why it never went any further? Trust me I want to believe that there is something that works but this one is hard to digest with hope...

I don't think it helps CH. I have an actual screen cover that filters out nearly all blue light on my computer (which I am on 7 to 8 hrs. a day) and it's never helped... I think it's a migraine thing as many with migraine are sensitive to light...

Sounds like a cool job!

I would think polarized glasses would sort of work like blue light reduction which you can put on most cell phones and can purchase for computer screens.. I have heard this helps for migraine don't know about CH...

Brain Pain:The illumination,In advance,You reject,I'm rendered naked, and splayed,Unarmed to your un-welcome intrusion,Arsenal of prophylactics,Beaten and humbled, by your stopover.The thunder is here,No hiding now,It's gone right,Right to the righteous region of the brain.Knees suddenly relevant,I rock, back and forth,Making even a mechanical horsey look dull,Prayers fly from my lips,My mind, my soul.They seem to go unanswered forever,At certain seconds, that I am positive are years...I concede my faith...I am repentant when the thunder subsides.Left only to wonder if the reprieve,Was your handy work?I suppose I'll never know,Unless my faith,I allow to grow! I know this won't hit home with all as all are not religious but I re-read this from time to time to help me remember how far I've come in dealing. Best to you all!

Serious whiplash!

Never seen anything like this but I'd be willing to try most if I thought it would give me 6 years in the clear!

Must be beautiful where you are!

That sounds awful!

I haven attempted as of yet (scared) to try but have a little confidence that I might be ok as long as I'm 100% out of cycle. Where abouts are you located? That's some weather your getting!

So I have discovered that altitude (up) when in cycle is a sure hit, but if out of cycle I'm good to go. I wonder if this would be the same for flying? The altitude of our primary home is around 768 and our vacation home is around 5,800. When all this lovley cranium joy started happening I didn't understand when my cycle started or ended so I became scared to go to our vacation home because it seemed that it would always end with me being in pain. Knowing what I didn't know then has helped me to make the trip up pain free. I suppose it takes a few years or at least it did for me to know my cycle (important stuff knowing your cycle is). Here is a pick or the driveway and my husband trudging through the snow to get the tractor to clear the driveway (terrible image quality) have to resize the image so small to get it to upload

I'm not an expert on the D at all but my last lab I was pretty high as well (320). @xxx is the resource for the D on here and I'm sure he could point you in the rt direction. I am assuming you are taking all the co-factors?