BoscoPiko

I sure act like I'm possessed during an attack sometimes LOL..Curse words randomly flying out of my mouth, odd leg jerks etc. However, I'm fully aware of what's going on so I would have to say no. Wish I was then it would be simple, we could all go get an exorcism and call it good;)

Yep spell check has no idea...LOL

So a quick search on the term you used for your type of attack is more of a symptom of a type of terrible migraine (wouldent wish it on anyone)! Partial paralization on one side of the body or the other accompanied by pins and lovely needles.. ouch!!!! Again I'm not of much help but holy hell don't want you to think you are alone that's for sure! You can message me any time you like. I'm pretty good about checking in on here of late. (I kinda like it here).

Ice cube on the roof of the mouth while breathing freezing air. Added to the the tool box!

Hi Gemma, I have cluster as well and yes, it's no bueno. I have never had one in the way you described. I suppose it could be quite possible to feel as if you can't move (maybe pain sensory over load)? I've only been dealing with cluster for a few years so I do not know as much about medicine as others on here but I have received some really good advise from asking.. I do know all about the lonely feeling that can accompany a cycle. As long as you have found this site (and you have) you are not alone. You can do searches in the forums and just poke around, lots of great info on here! Try and keep your chin up!

I'm supper sorry you are going through this.. Spiny just gave you the Bible. Can you give us some background? We all tell eachother what meds. Etc. But if you are the private type I get that as well.

One day down. (Off the toprimax). feel like I should be on a program for whatever abusers.. no nothing new to report. I'm happy swam in the pool and and got the 500.mg. quercertin today.. never know if I spell that correctly.. anyhow I'm trying..you folks are the best..!

I understand the frustration and do not blame you for it one bit! Neat that you have the knowledge to go out into the forest to find some of what you may need for yourself. The cost of supplements is outrageous!

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.