Maybe this would have been the first place post, instead of bothering all the time with private messages and theories.

Hello everybody.. Im.. MDB .. i live in spain.. i preffer to hide my real name .. for some reasons..
First reason.. is.. that im cronic 10 years.. you understand me for sure..
Each day.. each month each year.. i have less bullets to shoot.. against ch.. I am a father of two .. of 13 and 14.. happy married.
My children.. suspect something about my ch.. i want to hide this fact.. Dad is a superhero.. dad fix things.. you know.

Today.. my thinkings are to stay firm.. fight for be alive.. fight for my children.. my wife.. untill they have their future on track.. i wanna fight.. i want to
squeezing every drop of juice from the good times, and think about this drops.. when the bad drops comes from my right eye..

Usually i saw other forums.. whit not much activity..
This forum is great.. i have talked now with many members.. they are incredible "good" people, and i see some light in this CRshit.
Im going to open my eyes.. and read all in this forum.

Thanks.

SuperDad: Let's deal with the hardest problem right away.

Hiding from your family is not probecting them. They are confused, concerned about you, and blocked from trying to express their love for you. In the end, they are more likely to feel as though they have failed you BECAUSE you don't want them to be able to help you.

We love best when we share and accept for then they are able to give you their love and assistance.
---
I hope you are working with a doctor who has knowledge of Cluster and they he has you are a good treatment program. If this is not so, we need to start having some good talks about the medical care you need.

You need both: a doctor who knows how to treat you; and your trust in your family so that you let them help you.

Stay in touch......

MDB,

Bob is so right about your family. I used to be that Superdad, when my two girls were in their early teens and I have since discovered that all they did was worry, worry and worry about me.  Not good for teenagers to spend years feeling that way. The same applies to your wife.

So talk to them openly and honestly about your CH.

Bob is also spot on about working with a headache specialist. It is essential for your future treatment.

Peter.

thanks bob and peter..

My wife knows about my diagnosis since 10 years ago.. sometimes i try to make it smaller than really is .. because 15 years ago.. she have.. other cruel.. word .. illness.. that nobody wanna hear... shes fine now..
last two months.. she is my god.. sorry for believers.. i respect religion too much.. but she is my god.. she is helping too much.. she is my cheerleader.. supporting me in the way i find a best situation..
About my children.. for the moment.. i preffer to say.. "sometimes dad have little headaches".. close my room and watch the clock ticking..
Its very dificult to me.. "talking" with others about that.. i beguin to cry like i was 7 years.. old.. so i preffer to write..
in this 10 years.. i have learned to hide my CH for others.. as a result.. i have lost friends ( some.. not all ) i have lost relationship with my brother.. my way of being has changed totally.. ( im not the joy in the party ).. but...
I try to work like a champ. im the best in my work.. im good.. i work actually 9-10 hours a day if my body can resist..
I work in mi home too.. fighting with situations that involves have two teenagers in my home.. and i fix every situation like the stephen hawkings of the teenagers..
I try to make happy to my wife...
The only thing that not fit in my life.. is ... CH

I write that.. but i am a fan of schopenhauer.. ( philosopher.. creator of pesimism ).. if i not expect something good.. and it comes.. im happy.. but usually expect things goes wrong..
never have a single week good...
after say that.. i have 1 week very good.. with my personal theory about my dh3 gen.. and my acetaldehyde intoxication.

I´m waiting to things go wrong..  :)

thanks for reading me.. it helps me a loot.

P.D: I usually go to doctors.. they have tested 3 way.. ( tryptizols.. topamax.. verapamil ) i have medic assistance..

Hi MDB,
good to see more new people joining as it means that you also are getting closer to finding relief from your CH.
I told my kids about my CH early on as they would not have understood what was wrong with me when having an attack.
Also am divorced so it was just me and them when we spent time together (every weekend and some week days too).
I'm guessing you have read about Batch's D3 regimen, it is efficient in 80% of cases in reducing or all together eliminating the pain of CH.
You can read about it on the threads "123 days pain free and I think I know why" and "Anti inflamatory vitamin D3 regimen and survey".
Since I have started on Batch's D3 regimen 3 years ago I have been mainly pain free (PF) for the first 2 years and completely pain free the last year after adding a good probiotic all the time and Benadryl when pollens are around. Althought Batch's D3 regimen does not cost much
I am aware that supplements are not cheap in Spain, however there is a U.S website where the supplements can be purchased for much less and shipped for not a lot, iherb.com.
I can put together a list of links to each supplements on iherb if you wish, just ask.
Do yourself and your family a favour, get on to Batch's D3 regimen and contact him if you need help with it, it seems he's always happy to help.

All the best

Hi MDB and welcome,
I remember when my kids were young and I got attacked by the  [smiley=evil.gif] it was pretty scary for them to have to watch, Mom would say daddies got a headache so we have to make it go away, by then I would have taken a 50mg Imigran tablet with a very strong hot cup of coffee which would abort it, if I had caught it in time, If not and I was still doing the dance, she would get ice blocks from freezer put my head over the sink and soak the whole of my head and the back of my neck with the ice blocks whilst I was screaming my head off for another 20min. So, they grew to understand that I had this horrible disease and up until 2012 when I started on the vitamin D regimen would help with the ice when necessary. So, having CH's isn't something to be ashamed of, it's just were the unlucky 1 in 1000 to get CH's.

Hoppy

Thierry i would appreciate too much if you send me this list .. thank you.. because.. D3 regime if the next bullet i am going to use..( english is a problem for me, if i must buy something in a web english made webpage, i would love to have this list) i always have tried one solution.. and give it at least two months.. by the moment.. my problem with acetaldehyde ,intoxication cause by ADH3 Gen and candida overgrowth are working.. ( information extracted in this forum ( new and old forum) and other web sites and medic docs that i have been found.. pulling of this rope.
I am receiving a loot of help from everybody inside this great forum(batch user included with email and pm ), what a great person !! what a wonderfull people are inside.. SHIT of language i can not express my felling about this site and about all of you...... i only can express and write thanks !!

thanks hoppy, i discovered ice on neck, mostly a little up, between the ears.. few months ago.. i have wasted 9 years fighting crisis, with mental focus, and things like this.. for the moment.. ice is working.
Thank you thank you thank you, all

MDB, I get all my vitamins from the Biovea website, START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE and one of reasons was, it was the only place I could find Kirkland Mature Multi, on line! The one Batch recommends for the regimen. You mentioned giving it a go for a couple of months, but some times it can take longer than that before it kicks in, as it did in my case, so don't despair, if you think it's not working just stick with it and hopefully you will be one of the 60% it does. I'm now 3yrs CH free.

Cheers Hoppy

Hey MDB,

Your English is very good and we understand everything you are saying.

We have all felt that we wasted 9/10 years trying to deal with our CH and we also all feel much thanks for the help we get here.

Below is a photo of Batch's D3 recommended ingredients. It has made a huge difference to a lot of us and we hope it will for you too.

And talk to those kids.... They will understand a lot more than you are giving them credit for. I know, because I've been there. I even have my 3 year old granddaughter helping with her "magic kiss" whenever I'm cought.

Keep in touch.

Peter.

---

Hi MDB, I've replied to your post on the thread "hydrocodeine".
The list of supplements is there.

Hi MDB and colleagues, I'm spanish like you and quite new in the CH forum. I agree with everything people said you and sorry gentlement...I will change to write into spanish to explain where to buy and my experience with the D3 vitamin treatment here in our nice country ;).

Buenas compañero, lamento las circustancias de conocerte y por la experiencia que has compartido, yo soy padre de dos preciosas nenas (6 y 3 años) y me tienen que sufrir de cuando en cuando. Por otro lado te diré que jamas he ocultado a nadie mi espisodios (afortunadamente yo no soy cronico) y no he perdido ningún amigo por el camino; la verdad te dire que si ese fuera el caso no le des muchas vueltas, yo no lo haría ya q serian personas a las que yo no querria ni como conocidos.

Ya te han medio comentado el tema del tratamiento de la vitamina D3, en mi caso ha resultado una maravilla, llevaba 5 años sin sufrir mis ciclos (normalmente me daba durante 2-3 meses cada 2 años), el neurologo me comento que por la edad podria terminar desapareciendo pero no fué así.
Encontré, como tu, esta web y leí lo de la vitamina, nunca le he/habia dado mucha credibilidad a este tipo de soluciones, pero dió la casulidad que me acababan de hacer un analisis de sangre bien extenso y para mi sorpresa tenia una gran deficiencia de vitamina D3, empece a tomarla y desde hace 5 dias no he vuelto a sufrir los dolores (tarda unas 3-4 semanas de media en hacer "efecto", lo podras leer en un post del compañero Batch, muy bien explicado y completo)

Yo no tomo todo lo que dicen, solo un multivitaminico del Lidl (el naranja), Omega 3 (tambien del Lidl) y la vitamina D3 de Airbiotic AB de 5.000 unidades (dos al dia). Esta última se la puedes comprar a ellos directamente en su web.

Tras 25 años sufriendo estos episodios, desde los 14, casi no me puedo ni creer que haya funcionado, así que imaginate lo contento que estoy ahora. Suerte y no dudes en preguntar lo que haga falta.

Un abrazo

Pd: Los triptanes era/son los unicos medicamentos que me quitaban el dolor, pero solo si lo tomaba antes de que llegara al "tope" de dolor. Con medio sumatriptan tengo bastante

Thanks people to understand my "language change", I only share with MDB an overview of a lot of post and my experience in Spain best regards and have a nice day! XD

Hi.. im still here.. im stille alive.. and.. in last 20 days i only had a ghost crisis ( 2-10 pain, 8 minutes )... ( no yeast no sugar, no alcohols, no sugar alcohols, no pre-processed food, smoke 4-5 at day )
I discovered.. i had insueficinfy of vitamin d3 but... excess of potassium
My Primary doctor ( not headache specialist ) told me that i have high levels of potassium in blood 5,5 ng .. first of all i have to down this levels ( he said to eat less.. vegetables ? lol )

I still dont want not to listen the recomendations of the doctor.. thats why i have not beguin the full d3 regime.. i am only taking 3500 d3 ui a day and omega 3 . 2 pills ...

at this moment i have "itching".. in spanish its called "urticaria" itching all over the body..
I have read.. that  could be cause.. by verapamil long-time...
i finish my prednisone ( firts time on my life, 20 days taking it ) on 5 February.
I´m afraid to mix the d3 regime with this high potasium levels...

Somebody had the same experience ??

thanks !!

P.D: Gracias davespain !! que gran foro y suerte encontrarlo y encontraros....

Hi MDR,
So many of us here are on the full D3 regimen, as far as I know none of us is having adverse effects from it and we are all experiencing huge benefits such as being 100% pain free or reduced pain.
Many docotrs say that 10000iu D3/day is too much, if you ask me, they don't know what they're talking about.
To familiarise yourself with the benefits of high dose of D3, you could read through the site below

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

If you want to stay in pain and continue suffering, then don't take the D3 regimen.


By the way D3 also helps numerous skin conditions.
I have a friend who had terrible psioriasis, after having read the witamindwiki website, i suggested to him that he reads it too. He subsequently started taking the regimen as per Batch, his skin is now perfect, he is very very relieved as he used to be nearly 100% covered in horrible red patches

All the best

thierry wrote on Mar 7^th, 2016 at 3:00am:

Hi MDR, So many of us here are on the full D3 regimen, as far as I know none of us is having adverse effects from it and we are all experiencing huge benefits such as being 100% pain free or reduced pain. Many docotrs say that 10000iu D3/day is too much, if you ask me, they don't know what they're talking about. To familiarise yourself with the benefits of high dose of D3, you could read through the site below START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE If you want to stay in pain and continue suffering, then don't take the D3 regimen. By the way D3 also helps numerous skin conditions. I have a friend who had terrible psioriasis, after having read the witamindwiki website, i suggested to him that he reads it too. He subsequently started taking the regimen as per Batch, his skin is now perfect, he is very very relieved as he used to be nearly 100% covered in horrible red patches All the best

thierry...take a breath bro'...that's a remarkably passive-aggressive-absolute  post...based entirely on anecdotal evidence....I been told it's "not appropriate"....but don't take my word...Ima knothead now.................

Hi jon019,
re-reading my post here,
you are right, i can read and feel the passive - aggressive tone. thank you for pointing it out to me.
I feel frustrated when a remedy for our pain that is cheap, easy and so efficient is over-looked or avoided for some reason or other.
my bad.
MDR my apologies.
all the best

no problem man.. absolutely..
The only fact that affraid me about de d3 vitamin regime.. is my potassium levels.. and the big number of vitamins and componentes that the regime have..

im on the line to suffer heart attacks with the potassium so high.. ( i read it on the web ).. thats why im affraid.

thierry wrote on Mar 7^th, 2016 at 5:56am:

Hi jon019, re-reading my post here, you are right, i can read and feel the passive - aggressive tone. thank you for pointing it out to me. I feel frustrated when a remedy for our pain that is cheap, easy and so efficient is over-looked or avoided for some reason or other. my bad. MDR my apologies. all the best

Yo Thierry..it just didn't sound like you...goodonya for reflecting...

I coulda been nasty about it...which would have probably resulted in a nasty response....and everyone would have been the worse for it..dunno... nowadays my style is sometimes taken other than intended. There's an interesting thread in General Post titled "gosh" re PC...which has gotten me thinking.....

And boy howdy...THIS is a top ten in the CH bible:

"I feel frustrated when a remedy for our pain that is cheap, easy and so efficient is over-looked or avoided for some reason or other."

Agree 100%...........

Best

Jon

Hola MDB,

Check your PM InBox...  A high potassium level is not normal...

Take care and please keep us posted.

V/R, Batch

Hi jon019,
thanks for your post.
I would have to work hard at being nasty. + it never does any good.
Am delighted we agree on the frustration thing.
All the best

Hello again.
I am fine.. 8 febr. i finish prednisone.. and i began to do some things..
- sleep same time of the day ( 22,30 bed- 7:00 wake up)
- ice packs 3 times a day in the back
- No fructose no alcohol no polyols.. no pre-processed food.. only fish, meat and vegetables.
- i loose 15 kg of weight
-i started to take 2.200 ui vit d3 and omega3 in 24 feb..
- I only smoke every two hours one cigarrete
- i try to take sun as possible.

i have to big shadows in 15 and 17 march.. so i decided to up to 4.400 vit d3

In 20 feb. i had 19 ng/ml of vit d3.. next week i will go to another blood check of my serum.

This is ... by far far far.. the most big time without pain since i was diagnostic as chronick 10 years ago ( 4 days with no pain in 10 years ).. so definetly i think some thing is working..

I only want to say thanks to every single person that have reply me in this forum giving me help, hope, and a direction.. guys.. you are awesome..specially Batch..

I would preffer to make full cofactors of the regime.. but my pcp said to me.. take it slow and easy.. because my long term verapamil.. and my low heart rythm..

The past night was strange.. was the first time in many time.. that i went to bed.. and i felt confortable and had no fear.. ( sorry mi english.. i can not express it with words )

But.. i don´t know if some fell this.. i am affraid only.. some times around the day.. of break this row of no pain.. i hope this felling go away soon.

Thanks guys.

Hang in there MDB.

I come from Spain as well, I have been a long time sufferer and at the very least I should be able to give you some emotional support.

I have rejoined the forum after along hiatus (yes, I was blissfully pain free for a long time... so  I busied myself building a career, getting married, having kids and making my life complex in the way normal people do)

I am pleased to see a few more options are available nowadays, like this D3 new thing that everyone seems to be raving about.

Back in my days the only options were Trex, Verapamil, Oxigen and for those who preferred natural remedies Kuzdu or magic seeds.

Anyway, nice to meet you, but sorry it had to be in these circumstances.

With your permission I will PM you.

Remain strong

Javi