BoscoPiko

Love it!

Hey Spiny Yes! Mr. Bosco is indeed an Abby. He says thank you for the compliment You are so correct (again) I already know that the Topamax is not helping so I just need to stop it already. Just caught on to why you were spelling it that way LOL. Thank you for once again being awesome! (Sorry about your kitty passing)! 20 Wow!

Yes indeed, I have received so much helpful advice and information on here. I feel bad for any cluster head that has not found this site...Thank you all for putting up with me

I know!

Would make sense as I have no evidence that it has ever kept me from a cycle, I do however believe it has cut down the amount of bangers per cycle. No real proof just speculation at this point. I've been desperate a few times an upped the verapamil while in cycle and it has never helped so maybe I need to talk to my neurologist about switching. I have a bad habit of holding on to fear, hence I have not let the stupid Topamax go. I am sure many have noticed my double words (one of my worst side effects from it) even when I go back and try and catch them, they slip by me. I suppose it's time to ween off the dummy drug... Thanks John

Also... Thank you Spiny!!

I did talk to ××× and it turns out that it's not all gloom. I am taking vitamin k and all other Co factors I can't take benadryl as oddly enough I'm allergic to it... I am taking quercetin instead. My verapamil is the ER and I do often think of weenie off the toprimax as no one likes constantly double typing words etc...I need to get more labs done for calcium levels etc.. I'm going full keto and drinking tons of water to flush the extra D out for now ..

Hi fern, Sorry you had a bad hit. Do you have anything to help you through an attack? 02? If you have been diagnosed with CH and sometimes even migraine, seems that you should be able to talk your Dr. into a script for oxygen. A little searching around on here about o2 and the proper mask types will prove helpful as well.

Square one.

Well shoot, Guess I am not resistant... Email from Grassroots... Dear Rachel, Your Vitamin D serum level based on your recent test with us is 100 ng/ml or higher. We do not currently have any data to support any additional health benefit of having a level of 100 ng/ml or above. The recommended serum level range, per our Scientists' Call to Action, is 40-60 ng/ml (100-150 nmol/L) for best overall health. It is important to note that vitamin D related toxicity has been observed at levels of 200 ng/ml (500 nmol/L) and higher per J. Hathcock, Am J. Clin Nutr. 2007;85:6-18. You may choose to consult with your health care provider to discuss your results. Thank you for your participation in the D*action project! Sunnily Yours, Carole A Baggerly, Director GrassrootsHealth A Public Health Promotion Organization Moving Research into Practice

Hi Tony, I don't know much about what you may, or may not have access to in Finland, but I suppose I got lucky and when I was first getting struck and reached out to a friend that knew an apothecary and she allowed me to use her account to access a site called Fullscript.com they have very high quality supplements for the most part, (you do have to be a pharmacist/apothecary to order from the site). Maybe you can reach out to her as well and see if she may accommodate you? Her website can be found by Googling Two Poppies Apothecary. She also makes all kinds of teas, ointments etc. Not sure if this will do any good but maybe?

Thank you so much Batch! I'm on it! I should have my D3 results any day now from grass roots, they emailed me and said they were sent to the lab on the 7th and that it takes 10 days from then. I am somewhat on Keto but not that hard core so I'll step it up and yes the fire has been a bad issue. I'll print this out or copy and paste it and follow the protocol. Thank you so much for all the details!!

I know this sounds all kinds of silly, but I've been on the D3 reg for a bit now, along with all the co-factors. I messed up up the first loading schedule by accidentally cutting it 2 days short so I re-loaded for a few more. The D3 has helped in the way of lessening the severity of the pain when I get hit from a 10 to a 7 or so. I understand that the CH is constantly morphinhg and evolving and maybe that's what's happening this time just seems odd as I've only had this a few years.. I am on 480 mg of verapamil as a preventative (was at 600) but it was causing me heart palpitations so I backed down, also still taking 200 mg of the dreaded Topamax because I'm 2 scared to stop at the moment. I also take Coq10 800mg, riboflavin, vitamin C and recently started quercetin (not sure I spelled that correctly). I got hit 3 times so hard today that all I can think is that maybe my body is not absorbing the D. I even resorted to using the drops as I thought that would help with absorbing. I was unable to abort with o2 so had to use the nasty sumatriptian nasal and it only worked for 30 minutes. I'm just at a loss? On month 3 with only a week in between breaks... Just wondering if it's possible to need absurd levels of the D3?

Understood..

This could not have been said any better! One little glitch... Voting needs a bit of reform all in it's self...As we have discovered recently, it is no longer how we vote that counts; but who counts the votes...

Now days it is pretty doable. With access to amazon, doordash and a plethora of other online shopping options. I do use them sometimes, however I don't like supporting amazon and I often find that produce from an online shopper is often not selected well (squishy/over ripe/under ripe etc.). So I prefer to shop for those things myself. I also like to shop for things for my home in-person as I find it hard to really get a good idea of what something really looks like from viewing online. Anyhoo here is a picture of a face shield that can be worn without messing with ones ears and or touching the mouth... Might be an option? Oh and it's just down rt sexy!!

I think it's great that you are able to work out so heavily while battling CCH. Good on you! I don't think staying well hydrated can really ever be a bad thing.

No clue other than to tell you your not alone...

Maybe see if you can get away with a face shield? At least that way your not having your air ways blocked and breathing used up o2? I refuse both but I'm a mega jerk face ...

Uff.. I'm Sorry. I'm here in the land of enforcement and I do not ever wear one as the heat from my own breath has put me into a banger or two. I,however do not work for someone else, that being said I am able to get away with it. I've been kicked out of Best buy, Costco, Lamps Plus along with various other retailers (even if I tell them that I have a condition that requires I get max o2). Sorta silly as no one can site the effectiveness behind a cloth face covering? But then again ask a GP about CH?

Nothing new to report here. I am writing because i feel like writing. I did not have spikes today; nothing to report at least not in the CH world. I suppose - but maybe so? I do get tired of the typical; but never ignore a cry. I also wonder quite often how to differentiate? Although I'm sure it matters not much; after all a cry is a cry. I guess what I am saying is why not try? I am a skeptic; no busting for me yet - but homework? Are you really in true pain? The pain we speak of hear? Do you you live this way? For me, I wake and wonder if I will make it through a shower; will I afford my husband the luxury today? Shampoo and conditioning? No Spikes have you? Well holly hell! Lets reset the clocks or do what we just did do????

Any CH is awful but boy would I be lying if I said I wasent just a tab bit jelly of your 4 year gaps.. Sorry you get them at all and hope you find a way to make them say goodbye forever as I suppose that's what we are all wanting!

This makes alot of sense. Thank you for all the details!!

Or benadryl if you're not allergic..

I get the bangers back as well who knows why but a break is a break so I'll take it. I don't think I've ever been slapped back from o2 but not 100% sure as of yet still taking notes and walking around blind.. the o2 helps me abort for about 7 to 20 minutes if I'm lucky and it's a late banger I get to go to.sleep and then I think I'm getting hit or dreaming of spikes I can't differentiate sometimes I wake sometimes I don't. Lucky I don't most of the time.. got intouch with Batch today and started Quentin as I'm allergic to benadryl.. maybe try that.. ?