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Everything posted by tingeling

  1. Dan and Lee Ann, go to nezxt conference and meet them. They`re even better than you think they are. I`m so looking forward to see this!!! Exciting Thank you Dan and Lee Ann for being who you are
  2. A friend of mine said "They are too fit, that makes it not funny..." LOL
  3. Here`s a CrossFit groups version of LMFAO`s Sexy and i know it. "Girl look at that body, i work out." LOOOL http://youtu.be/9D5NxEC_WSE
  4. Thank you folks This is a wonderful place, unique. Lately, i have been a bit more open about my alternative treatment. It seems to me the world is in a change, i do not meet the same curtain fall when people hear about it as i used to. They get interested instead, interested and very suprised why we are not given this as a med treatment. If there`S a change in the way i tell about it, i`m not sure, but i do not get judged. Also, i do not have many followers following my blog, but there`s allot of people subscribing per email, even people from where i do CrossFit, customers i had when i had my shop. It means more people know about CH. It`s like a drop into the ocean but every drop will make a different in the end let`s hope Jeebs, i ment the picture of my daughter and me. It is from the first summer after joining CB, we travelled to Oba in Turkey. t doesn`t work when i do it. Stupid computer Have a wonderful day everyone PF days to all Ting
  5. Hi My story When i was 23, right after i gave birth, a couple of days after i started to get this sudden, sharp pain hitting me, it hit me like lightning, from nowhere. It felt like i got a sword in my head. The first times i got confused, i felt my head with my hand and looked behind me, i expected someone there who had stabbed me with a knife. No one there. I remember i called to the ER and they just said "How odd, and you say it went away? Well, call back if you get any more." That was only the beginning. I started to wke up at night with a terrible pain. This pain so horrible i thought i had a stroke and was dying. I went up to go to the bathroom and fell down to the floor, unable to walk i crawled to the bathroom, had my hands to the sink and dragged myself up to look in the mirror. What i saw was my face with the one side hanging, like i had a stroke. Unable to do something about it cause of the pain i was just lying there. I was so afraid, i thought i was dying. It is hard even now to understand how this kind of pain does not kill you. I went to my doc over and over and over again. He told me i had a migraine and was given migraine meds. It didn`t work. I was hit every night and day. He told me no one had migrains everyday. I went to the doc again and again and again..... Untill i gave up.... I started to think why everyone else with a migraine didn`t seem to be in this much pain and that they were coping somehow, and why i couldn`t take more than this. Or was it worse? Did i just convince myself it hurt this much? I didn`understand it..... I tried everything, healing, medicines everything. Nothing worked. Nothing. A ice dagger, cold as ice and one hot as glowing metal one form the top and side of my head, in my eye. Twisting the knifes. Tooth ache so bad in every single tooth on the side. My eye felt like it was on it`s way out, red, swollen. My eye was tearing along with my nose. My head, like an open wound. It feels like every fiber in my body is shivering from the pain. Like sharp, burning hot razor blades was sawing in my scull and down to my neck and all the way down to my fingers. In the beginning i was afraid to die. After awhile i prayed to die. In the end i was crying and felt anger, why couldn`t i die?! Why didn`t i die?! Starting to ask myself questions like "is there a God? Is this worth it? Is this a worthy life? It must help if a hole was drilled to let the pressure out?" I felt like i had a devil inside my head, torturing me. Laughing at me, saying "no, i won`t let you die. I will torture you all your life and you cant do nothing about it." Only torture usualy ends with the relief of death, i didn`t die and it made me raving mad!!! Please let me die!!! I lost weight, i got depressed, i planned for suicide. After 6 years getting hit everyday, every third hour, every thit lasting about 3 hours, i couldn`t take it anymore. And you get sleep deprived, REM sleep triggers an attack!! So for years i couldn`t sleep more than around 90 min before i woke up with it. No painkillers help, no doc could help me and the doc`s told me there was nothing wrong with me. There was nothing for me, not a worthy life. My conclusion was that my daughter was better off without me, i was a burden to her. From the time i decided that i actually felt a bit better. I felt calm. Finally, i had a solution to get out of this hell. Finally, id din`t have to go trough this anymore..... "What if Sara got this?" One day it suddenly came to my mind. I needed to find a solution so that i could be there for her. I found forum on Internet, filled with other people experiencing the same horrible pain as me. They had alternative treatment's and lots of trick like Red Bull, O2 etc etc. I found support and advices. And most of all, finally, i wasn`t crazy. The pain i had felt was real, it wasn`t just me. This was a turning point. I wouldn't have been alive without these wonderful, helpful people. I appreciate the community and every single one of you so much. Your with me in my heart every single day. Everyday when i walk out the door or just wake up to a new day, 2 years after i found all of you, i am grateful. Every time i drive my daughter to scout or some activity i`m grateful, cause i am able to do it. Every time i`m at the gym i`m grateful i can. And the extra bad days, i am grateful cause it is so rare now i have these high kips. (Kip scale is a pain tracking scale) I wish for every single CH`er to not be sceptic, be open minded, we got nothing to loose trying and keep trying. I love everything i do everyday. I got my life back thank`s to your help. I am not a prisoner in my own body anymore. I can take part in my daughters life, the way i want to do it. Cause of you and the effort on the forum. This is how much it helps, doing what you do. Every post, every advice and joke. Your with me in my heart forever. I`m not so active here now a days, i jsut want you to know how grateful i am and tell newbies how much this can change life. Thank you. Tingeling Grief can awaken us to new values and new and deeper appreciations. Grief can cause us to reprioritize things in our lives, to recognize what's really important and put it first. Grief can heighten our gratitude as we cease taking the gifts life bestows on us for granted. Grief can give us the wisdom of being with death. Grief can make death the companion on our left who guides us and gives us advice. None of this growth makes the loss good and worthwhile, but it is the good that comes out of the bad. (From: Beyond Absence: A Treasury Of Poems, Quotations, And Readings On Death And Remembrance) - Roger Bertschausen Ps. I pic was supposed to be here, but i can`t figure out how to upload!!! It`s in my blog. This is also written as a post on my blog, so it is written without treatment details, you folks know the details
  6. Doesn`t sound odd at all to me. This is something i always had after busting. It`s like i won`t get hit but the hits is camouflaged for the time the bust works. When it`s effect fades, it will start to hurt instead.
  7. If your wondering if it will stop completely for a long period, like for an episodic, is that what your wondering? Doesn`t seem to me that is possible. But for me if i do seeds once a month i remain PF. Shadows is just there, they don`t bother me usualy. But i have also been shadow free, but for shorter periods. As i see it, if i am PF for a month i have broken my cycle of hits that used to come every third h. And i sleep well at night, do not wake up 01.27, 02.57 and 04.27 anymore LOL I`m sure i could try more busting with shrooms etc but i`m free from it now as i experience it. Life is good
  8. Hi It`s been 2 years since i joined ClusterBusters. 2 years!! Those 2 years have changed my life, you all know that The past 2 years have been filled first with hope for better times, hope for some relief. Then gratefulness of the pain free times i got, and then transformation. This year, the third year that`s already started i don`t meet with hope and thoughts of a better life. I`m into year 3 and meet it with certainty. I am certain that this will be a good year. A big thank you to everyone single one of you. Thank you for being here. You have given me support, advices, laughter and tears for 2 hole years!! Without you i wouldn't have been here. Not just a figure of speak. I am grateful for all the time shared :)' Life is so GREAT!! Wishing everyone a happy new painfree year. Luv u all!! Big hug Tingeling :-*
  9. It is crazy but true!! They told me that the only thing they learned about CH was a few written lines. But in a way, sometimes i think this condition got very characteristic symptoms, so far from migrain. How come we all get a migraine diagnose thrown at us? I said that. They agreed.
  10. Your from UK? Just sounded like it maybe. If your from UK, i have a very good friend over there, a fellow sufferer i got to know attending the Clusterbusters convention. I could introduce the two of you, he is a very good man, very helpful as well. It is a life changer to speak or meet other CH`ers. I`m fromm Norway. RC seeds are very easy to use and buy as well. For me they have been very effective. I went from LSD to Shrooms and now RC seeds only. I get online them from Allsalvia Uk. Very easy. Bang them with an hammer, soak them in water, drink it and then go to sleep. And sleep like a baby. Or better... LOL. Fist time i tried them i woke up and my arms hurt, i had been sleeping in the same position for 9 hours or something like that. Would usualy sleep around 4 h max every night, and that was not 4 straight hours. You siffered this allot longer than me, i can`t imagine what you`ve been trough. I was chronic over night and i got hit every day and night every third h. Now 2 years after i`m a CrossFit`er, had several flights and even as far as to the Chicago, and in genearl just loving my life pain free. I do RS seeds once a month or even every sec months sometimes. It is not stopping me anymore and it is not dominating my life or most important of all my 8 year old daughters life in any way. Just cause of this treatment. Pretty amazing or what? You certainbly came to the right place. Very excited for you
  11. Hi Welcome to you Your receptors are shut down and gradually starts to re open again for about 7 days after the first dose of LSD. You need to wait before the next dose. Glad your here with us PainFreeWhishes from me Tingeling
  12. I tried different and some actually didn`T work for me. But those i bought from Allsalvia has always worked very well. http://www.allsalvia.co.uk/cluster_headaches.htm Always kept them in an airtight box in the freezer and never experienced any qualitie change. I buy 8 packets at a time usualy. Also i soak them and freeze them again in a bottle. defrost and use when i need them. Works every time.
  13. It`s now 2 years since i joined CB. Never would i have guessed life was about to change this much. It makes me so happy every single time anyone choose to go this direction. I`m so excited for you both. And remember, it is a process and it improves as time goes as well. Good luck Anthony and Renee!! Go fungi All the best!! Tingeling
  14. Yep think so. I even freeze and defrost mine after soaking them, if i change my mind about dosing.
  15. We need a like button in here ;D
  16. Hi Anthony I`m nt typical CH`er either, but again, what is typical CH? Typical CH behaviour is to keep playing tricks on us, we never know how it will behave really. In the beginning i kept telling my doc all the symptoms i had, i feel my brain is moving, it feels kile a balloon or a worm crawls inside my head, i got hearing loss from time to time, it pops in my ear etc etc. He just looked at me. It`s not listed as CH symptoms. CH is so much mor than just extreme pain, droopy eye and runny nose. When you think of every single one you know of that got this condition and seperate them into two groups. One group doing the traditional drugs and the other group doing alternative drugs. Do you find something that make a big difference between those two groups? It seems to me that the people doing traditional medicine have their life occupied by CH. Everything is about CH. And most still suffer even if they use allot of medicine. The other group seems to move on, picking up on old or new hobbies etc etc. In general a very positive group of people who won`t let this condition define who they are. And also does not accept sideeffects from medicines that may not work that well anyway. Or don`t want medicines on a daily basis. Or like me, none of the trad meds work. If you could choose, meds everyday or one dose one time a month, maybe in a short period every 14 day? My opinion. Go off all meds the way you have to taper down and go for it. Why not? Your saying yes to life, that is the biggest risk. Painfreewishes from me Tingeling
  17. Hi When are we going to see our movie star on the screen?! The Nat Geo. Tingeling
  18. That is the nicest thing i have ever been told. Thank you so much Wow!! To do what we are doing, looking at the different hobbies, it takes a very strong person i think to keep holing on to interests like this. It show once again how incredibly strong we CH`ers are.
  19. you write books? Awesome! What kind of books?
  20. Hi This day has been GREAT!! I knew it Today i have talked about CH to medstudents!!! Can you fecking believe it?! I was asked if i could come and let medstudent ask me questions about CH. What to look for so it will not be mistaken with migrainurs, how to treat it the right way with O2 etc etc. It was a bit sceary as well, cause i looked at their faces and how surprised they looked and how little they knew and how frightening they think it is when they do not know how to help a patient. They found it hard to believe how little we sleep in periods and that ambient actually don`t make us sleep always. It was interesting, i`m glad i was asked. Maybe it helps to be this stubborn i`ve been. I feel so lucky, my life has really had a positive turn. It feels so rich. It`s like we get a sec opportunity in life, that is not to take for granted!! Lately i have been thinking i had to find a place to order Benadryl, i have to order it from a EU country i think it is. Anyways, all of the sudden i get this message today, the sweetest persons asked for my adress and they will ship me!! I really appreciate that. Thank you a million times Like i already said, i am so lucky Had a great workout today. Sara`s with her father for the weekend so i will do CrossFit tomorrow and sunday, if i`m able to it. Also, i`m back with Astaxanthin and that works great for me. It takes the shadows and make my PF time shadow free. Can it be better?! Tomorrow Tingeling
  21. Hi there bubblesup!! After we talked at the conference i been wondering what our board name was And wow, yes that do not sound easy. You have to be one strong person to be coping with it all. Glad you found busting. I know what you mean that it works on so many other areas than just the pain, it done more for me than all the therapy i ever had. Jeff, OMG how cool!! You never know, all of the sudden someone want what you make. That is so cool!! It hits me, we are pretty active and maybe a bit extreme we CH`ers, aren`t we?
  22. Happy birthday Ricardo!! Hope you had a wonderful day yesterday :) (One day late, i know....) Birthday hug from me Tingeling
  23. Hi In my experience as a chronic and i bet it is even worse for episodic`s during an episode, cause life is getting so much more turned up side down, i found it hard to not become CH. With that i mean it occupied my mind. When i started to bust and got better i realized i didn`t know exactly what to do and decided i needed a hobby. Didn`t know where to look for a hobby or what i really would like to do. My head had been occupied and filled with this condition for so long i felt it had erased me. Found this very difficult, challenging. Think it is easy to lean back and stop, then CH still got a grip on us in a way. I started out trying things and ended up with CrossFit, different handcraft, mycology (It is a great hobby!! ;D), drawing and writing. Among some. But this is what i spend time doing like all the time. It can be very much inspiring to hear about other peoples hobby's. What is your hobby? Tell me, tell us!!! PFW Tingeling
  24. Thank you Jimmy!! Hope to see you in Vegas as well!!
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