jackieblue

21 years old in 1986. Thought I had a toothache. Was diagnosed quickly but was prescribed nothing. There was no medicine and little knowledge. There is more knowledge and still no medicine to really make these things disappear. I am episodic, every 1 1/2 to 2 years for 8-12 weeks. Since busting, lasted 3 years. Would have been longer but got lazy and comfortable, forgetting to bust. Thank goodness for this website and the wonderful people who live here. What I dreaded in the past is now a completely manageable illness. There are a few rough patches, but a totally different life than years ago with traditional meds.

Still PF here. Birdman and I are on the same circadian planet. Hope all others are finding relief. Hugs!!

I just read your post and am so happy for Jan and you! Tell him that I know things are going to continue to get better for him because he has an angel by his side.

I just spent the morning reading this entire thread. Although I currently busted out of an eight week cycle with the help of seeds, M, 02, and the great people here, I am still so intrigued by new information. Les described our condition so clearly, like no doctor I have ever seen. His writing style is a gift and his insight is so inspirational. He is honest, especially when it comes to the cigarette connection. If nothing else, the pain is much less severe when smoking is avoided. I am taking the vitamin reg and will not be smoking anymore. I was casual and inconsistent with smoking anyway. On and off for years with no real addiction. Just did it to relieve stress, when having drinks, or when others were indulging. I would love to know Les' suggestion with licorice root when it comes to maintenance.

Hi Michael Tell us more about yourself. You have reached the most supportive and resourceful place on Earth. Jackie

Thank you for all of your support. This cycle is officially over. Short one in retrospect...8 week of hits. I promise to stick with a maintenance schedule this time. I got comfortable with my 3 year remission. I also promise to check in here more often to help those who have been here for me. My first charitable donation for 2013 is being made here... may a cure be in our sights! Happy New Year, Friends!

I also think I am nearing the end since I am sleeping through the night with a little activity upon waking. Busted with M 11 days ago and have not had sleep hits. Sipped on some Coffee Patron on Christmas Eve with no headaches. Had a mild headache yesterday. Took 85 seeds last night. Slept well and feel pretty good this morning. Neck and shoulders are really sore. Perhaps a massage today? I have my fingers crossed. Happy 2013 to All! May this year bring miracles to our cause.

Great news for you both! Things seem so much better than a few weeks ago. I also am improving but not out of the woods. I slept all night and woke pain free. I was so happy getting ready to open presents and then I was visited by the "buzz killer". It was mild and knocked down with O2 quickly, but a clear reminder that things are still not normal. Tell Jan that he has a friend in the States who has faith that the new year will bring many more pain free times. You are his rock. Merry Christmas! Jackie

I'm praying and pulling for you!

Do you mean Gabapentin, the prescribed medication?

This is really great news! Since you are feeling some minor activity, you may want to bust one more time. I busted Thanksgiving and had 2 glorious pain free weeks. I was convinced I was done with only minor activity. Then out of nowhere, it returned with a vengeance. I don't want that to happen to you, even though you belong to the evil empire ;D Seriously, when my cycle ends, it is gone like it was never there. No shadows, nothing. Just an idea. If you feel confident, then go with your instincts. I am cheering for you!

I also feel that this is the only sane place during cycle. Everything I have learned has been from here and our sister site. The medical field has been a waste of time. We are all learning as we go and eventually it will all be figured out...leaving the docs and insurance companies in the dust. I did come to Chicago a few years back, but only attended the conference for one day. I met a few people who were really nice, including Dr. Andrew and Bob. I really want to attend, but September is tough being that it is the beginning of the school year. I'm sure I can do Friday to Sunday if I plan early enough. I am so tired and have to work at 8:30 am but don't want to close my eyes. It is 1:20 am and I am actually contemplating staying up. That can't be good either. Hugs to all!

I am so frustrated with my family and friends right now. I feel that, although they all want me to feel better, they are inconvenienced once again. Yes, my husband goes for my 02 refills and my mother calls every morning to ask how my night was, but no one is actually trying to do what I ask. Knowing for 20 years that sleep is the enemy for me, my husband still harps on me to go to bed earlier, brought me a $150 pillow home the other night so I can sleep even deeper, and told me to put on really comfortable pajamas. He them proceeds to rub my back and tells me to stop thinking about them and they will go away. Last night, he said that I should read a book at night instead of being on this website because all I do is live and breathe these headaches. He has been to the doctors and watched cycle after cycle, but he is a "know it all type" and always has a new suggestion. "Wear my CPAP, take seeds every night since they make you sleep, stay home from work and relax/nap, etc". I asked him, as well as my whole family, to be very patient with me. I know I am being short with them because of the lack of sleep and pain at night. While they sleep, I am in hell. I asked if they could please not offer any suggestions, but rather be a sounding board for me so I can let off a little steam. I cannot take this out on my prek children at school or co-workers and I try not to lose my temper at home, but this is impossible at times. So I apologize before hand and tell them I love and appreciate them, but I only need them to try to be understanding. I still go to work, take care of the house, provide some meals, get them everything they need, and am preparing for Christmas. They still snap at me, gang up, and make me feel like I am a crazy person. I am not perfect, but I am doing remarkably well for what I am going through. I have not inconvenienced them in any way, I don't bother them in the middle of the night, and I try to live as normally as possible. I don't need for them to do anything for me except be patient and understanding. My best friend just called and I told her how badly I am feeling. She said everyone is only trying to help and I need to be more understanding. She said that I need to be more patient because I am putting them through a lot. When I mentioned the fear of sleeping and my husband with the early to bed comments and pillow thing, she told me that I am not thinking rationally because of the lack of sleep and there are a lot of worse things going on the world. I am sorry, but I expect my husband and life long friends to know my disease by now. I certainly would not cook him up a beautiful dinner of steak, shrimp, and ale while he is suffering from his gout. I get that they all want to help but I am crying out for specific help and they are all unable to do this. Although I appreciate you all here at our second home, I am feeling really all alone right now. :'( :-[ :'(

Thank you so much! The Edison neuro is right around the corner. Will give him a try.

She was both of those. She was so condescending, treating me like a child fibbing about a " tummy ache" so I could miss school. When she tested my knee reflexes and had me walk two feet while she watched and told me what a good job I was doing, I almost walked out. I needed the 02 so I played along. Don't go to St. Luke's if you live near NYC. There are better places. I need to find one in Jersey.

I told my neuro in NYC about seeds, since I was in the study a few years back. She rolled her eyes and told me she never heard of it. I told her the study was published and she sarcastically asked me what journal it was in. She knew nothing about the Bromo study going on in Germany but told me the Italians are really up on their meds. This neuro is located at one of the most respected headache centers in the country. I understand that they cannot support the LSA approach, but to play dumb was insulting. She handed me a script for Imitrex anvd some other meds, which I chucked in the garbage on the way out. I also told her that I have been a patient there for 15 years (she was new) and may need a note down the road for a few days off from my teaching job if sleep deprivation becomes a problem. I have missed only 12 days of work due to CH in 25 years and have 200 sicks days. She said she would never give me a note for that reason. The only reason I will ever go there once a year is for my O2 script. I have resolved to never ingest another Med. I don't know if the seed issue gave her an attitude or the fact that I said I have been on everything and was not interested in trying lithium! I say avoid the seed or M conversation because it is competition for them and they will not be interested. Get your O2, your vitamins, and natural remedy of choice and keep the conversation here. Just my thoughts from experience.

Hang in there, Avrild. You are in the right place. I am in my 7th week and know the frustration and exhaustion. The best decision I made 2 cycles ago, in my 15th week, was to dump all meds. I was out of control and hopeless. Nothing worked except O2. Since using the busting method here, I am in a much better place. I was right where you are. I can't shake this cycle totally, but I know that my hits now will only come at night and I do get strings of days pain free. I am tired during the day but am totally functional. The meds lengthened the cycle and made the headaches come at all unexpected times of the day. Almost did nerve block. I know how hard you are trying to find relief. Take a look at this site for ideas and stories that might help you. There are many great people here for you who totally understand. Ask lots of questions.

Siouxz, I had a cycle several years back that lasted from Thanksgiving to St. Patrick's Day. That would about 16 weeks. Most cycles for me are about 6 to 9 weeks, so I was really getting worried. I was on every med the neuro had to offer. What I found was that they only made things erratic, more painful, and lengthened the cycle. I was about to lose my mind. One night I could not take it anymore. My husband called the doctor who told him to up my doses....I screamed and threw every bottle and needle in the garbage. I took the HBRW seeds and my cycle ended immediately for 2 years. The next cycle was shorter and easier. I maintained with RC seeds after that, but did not stay on schedule. 3 years later and now am in another cycle for about 5 weeks. I only had 2 rough weeks of night hits. No day hits as I have dosed every 5 days, alternating seeds and m. They are not gone but are under control. All I can say is that you need to get away from the medication if you can. If you respond to the 02, caffeine, and m, then rely on them. I know the pain can be horrific, but if you can manage to detox, then the other things along with the D3 reg may get you back to normal. Also, I was in cycle for about a month before I delivered my daughter. The cycle ended the day after she was born just like you! I told the doctor that the labor without meds was a breeze compared to headaches. He did not understand or believe me. I don't care for many doctors these days. This cycle will end. Hang in there.

Hey Birdman, This is really as bad cycle for you this time but you need to keep your eyes on the light at the end of the tunnel. I am so sorry that you seem to be resisting treatment. When I was in my worst cycle about 6 years or so back, I ordered HBRW seeds. They made me really sick and I had an awful night, but the cycle stopped dead in its tracks after 16 weeks. Maybe trying something different may work for you since it seems that things are getting shaken up. I have been where you are and thought it would never end. Things will settle down soon. Hopefully your need for the drugs will lessen and you can get back to busting because I always found that they lengthened my cycle and made it erratic. But for now, do you what you have to so you can get through this. In the spring, I want to meet with you and David at Citifield and celebrate your success and David Wright's contract Hang in there and be strong.

Update... no hits all day but 7 last night from 8:30pm until 6:00 am! What is happening? I am so exhausted I am going to lose it. Does this happen sometimes while busting?

Update...no HA today. One was impending and quickly disappeared. I really have not had any during the day this cycle. I can remember years ago before meds and O2, I would get one in the middle of the night which lasted about 40 minutes and then it was done until the next night. Even later when day hits started, the cycle was less than 6 weeks. The addition of meds definitely made things a lot worse. Never again. This works better than anything. I hope I can knock this out and make it the shortest cycle in my history. 5;days and I will try again, a little less M mixed with seeds. I like the combo. Thanks for the encouragement.

This happened to me and then things settled down. Are you taking any other medications?

Oh, boy...what an adventurous night. I took a large dose. I am not sure how much, but it is dry and it filled 4 Ritz crackers...a lot. Anyway, fell asleep but woke one hour later wired. Could not go back to sleep. Could not get comfortable. I was cold, then hot, then cold, then hot. I could not speak...really weird. Fell in and out of sleep. Felt several headaches trying to break through throughout the night but M fought them off. Then this morning at 6:30 I had a Kip 10 upon waking. 20 minutes of oxygen and it was gone. I now have a residual headache and feel like crap. Is this a slap back, a bad sign, a good sign?

Thank you. Sleeping is not a problem at all because I do not like the feeling I get when awake. My husband gave me a big dose. We will see. I did wake up last week after three hours for the bathroom and it was really funny. I had forgotten that I had taken them and was really woozy. After I remembered I laughed and staggered back to bed. Another 5 hours...it was nice. I am expecting the same but hope I feel good enough to go to work. It will have to be better than the 2 hours sleep I got last night. Also went for a massage and an energy medicine work up earlier to prepare for a successful night.

I am attempting one more bust tonight to finally put an end to this cycle. I always take the Vitamin M a half hour before going to sleep. I am guaranteed a full night of undisturbed zzz's. Does it make a difference if you stay up or go to sleep? Is it equally effective?