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Everything posted by razorPP

  1. low histamine diet trail is over, some things positive, but to many ch hits for it to be a game changer, I learned a lot about trigger foods, and how histamine levels effect me
  2. I got a new box of Benadryl, took 50 mg last two nights, pollen app shows high pollen count the rest of this week, I'm kind of impressed, this Benadryl seems to be lowering my histamine level, ch low to medium shadows, better than were I was a few days ago. wait and see
  3. Good call, pollen has been medium high starting early last week, during days of CH, pollen will be high the next few days, I used Benadryl generic brand on day two and three of ch last week, I didn't notice any help from Benadryl, going to try non generic brand next, also signed up for pollen email alerts.
  4. CH morphed it's way around my efforts, just passed through three days of intense CHs, I'm disappointed but it is what it is, staying on diet to see if CH goes back to mostly a shadow , next....
  5. Reporting on low histamine diet: The first three weeks of diet I worked on eliminating foods on list, 4th week, tried to stick mostly to low histamine diet, adding no left over food older than 48 hours (cook food have more histamine), still using coffee and tea (tea is on list), added Quercetin (works on allergies), 5th -7th week getting better on sticking to diet, using frozen vegetables, removed tea, feeling better after removing tea, very light shadow in the evening, 8th - 9th week my body is starting to change, must take awhile for histamine level to change or maybe the anti-inflammatory state of my body is getting better, mood is a lot better, very low pain levels (almost does not register, from where I’ve been), 10th – 12th week the same, light shadows, I felt the barometric pressure change but it did not trigger a CH. Daily I take the D3 regimen, quercetin 500 mg, lion’s mane/ mushroom pill 1 g.
  6. Relaxation, explains why CH sometimes starts building on the way home from work, and maybe that's why a nap is a trigger, I'm done relaxing, I'm staying wound up, hehe.... this list is good, most of these food items on the list are on the histamine food list that releases histamine in your body
  7. Relaxation, explains why CH sometimes starts building on the way home from work, and maybe that's why a nap is a trigger, I'm done relaxing, I'm staying wound up, hehe.... this list is good, most of these food items on the list are on the histamine food list that releases histamine in your body
  8. This diet has an effect on my CH in less pain and occurrences, a D3 like experience. Has anyone else tried the diet?
  9. I’ve been on the low histamine diet about 9 weeks, very disciplined the last 4 weeks, I learned that my body produces histamine when it’s under stress, and during a two week period CH ramped up big time, I almost stopped the diet, the stress from three weeks ago is over and this week is back to very low pain or a ch vise like pressure on the right temple, not painful just there, the ch present is what I call it. So it’s been better on the pain level and the number of CH occurrences, like D3 it helps my very stubborn case of CH, as my neuro likes to call it. I have learned that when you order a plain hamburger, they always ask no cheese, pickles, mustard or tomato, nope plain… naked. There is no tomatoes or good aged cheeses on this diet, ugh… Here’s a pod cast I like, http://c7c.37f.myftpupload.com/dr-janice-joneja-histamine-intolerance-interview-transcript/. Did you ever think when you got CH you would know this much about science and medical terms and names of drugs? So, I raise my plan hamburger in a toast to being a self advocate of one’s health in our CH journey. Cheers and peace
  10. I'm getting this message: unable to download app, "Registrate your Journey" could not be installed at this time. using an ios device, puts an icon on my phone, but when you try to open it, just retries app install. web site I'm using to install app, http://totdesign.nl/category/registrate-your-pain/
  11. Reporting back after a couple of weeks, l have to say something has changed for me in a positive way. The incapacitating pain is just not there anymore. There is still a ch presents in my right eye with some pain most evenings, but it's in the 1 to 2 range. I have had two tough evenings. One was storm related, the other was just over doing it, feeling good and doing to much, 5 to 7 range and with a short duration. Still on D3 and a little o2. I'm still waiting for Ch to find away around this low histamine diet. Wait and see
  12. Another week has gone by with very positive results. I normally get hits in the evening around 7, and their at various levels and duration. But, the last week it's a micro hit, that's what I call it, still a ch hit, but in seconds and flashes through, it doesn't stay and build. I have had some intense micro hits, but the recover is very quick. I still have the feeling of the ch behind my right eye, it's hard to describe. The diet is not hard to be on. I'm still getting use to not being incapacitated in the evening. wait and see
  13. sorry to hear you wife is going through this, you found clusterbusters, tell her she's found a group of folks who have been where she is at now, there's support, knowledge and hope here. i've been to the edge and it's hard not to see past it. thank you for being there for her, we are going to get her to a better place than she is at right now. i came from where she is now, these folks here helped, this ch stuff can wear you down, but the d3 once it gets in her system will help with the pain level, and it will take time, batch has all the info you need for d3. get the o2, correct flow rate and the right mask makes a big difference, two thing to start her feeling a little better, good luck, peace
  14. It's been eight days, something is going on in a positive way. I've been on the diet fully for a week now. It's something hard to tell being chronic for nine years when I have results and what they are. I just take it for granted that I am going to get hit at 7 pm. There is still a very slight presents of ch behind my right eye. Also still taking D3, so where I would be at two or three level and higher, this week it's been .5 to 1.5 , wait and see.
  15. This has got me interested. I'm have started the diet, only a few things this week. I just picked one of the food list from one of the links. I'll X out more foods as the weeks go by. Peace and may pain free days find you.
  16. My o2 prescription is for 6 lpm, you can exchange or buy a valve that goes to 15 lpm, I think 6 lpm may be all the doctor is going to write script for. When I changed o2 supply companies last year and I had to get another script for them, it was 6 lpm. The 02 store does not care how many tanks I get or if I have a 15 lpm valve.
  17. Good information, does your doctor use X-ray technology to locate the nerve with applicator and then apply medicine? The doctor I went to was not a radiologist, he just kinda put it up my nose with me sitting up. I never thought this was an effective way to apply medicine. It ran down my throat most of the time. After seeing this I would be willing to try this again if it was applied by a radiologist.
  18. I found a article about patients receive a ketogenic “modified Atkins diet†or “Classic Diet†characterized by a 3:1 ratio (75% fat, 25% non-fat macronutrients and getting results, http://www.thejournalofheadacheandpain.com/content/16/S1/A99. I'm still searching for more information. Has anyone tried this diet?
  19. I had a SPG done at a pain clinic. The process was with a new type of applicator which went way up my nose, both sides and then lidocaine was dripped on nerve. I went through ten treatments with no results, except for the fact of knowing this procedure would not work for me a chronic. It even aggravated my evening cluster. The doctor was kind of dumb founded that it did not work. This is just my experience with this process. Peace
  20. Sorry for your loss. Great story and tribute to your best friend. I'll give my little buddy a extra hug and treat in honor of Buster. Peace
  21. Coffee My dog pressed against me I agree depressing as hell
  22. moxie thanks for sharing, it's cool you can put your thoughts and feelings in a poem. Would you compose us a poem if we sent in a line? A CB group poem. peace
  23. Beautiful house, and nice looking mushrooms, makes me hungry, you are blessed my brother. peace
  24. razorPP

    First Post

    hi renee and welcome, your post reads like how my journey in the ch process started out. a list of drugs to try, none really touched the ch pain. but it was what the doctors knew to try. after 2.5.years i realized that i had to take my own ch health plan over and find the best possible things for me. i read and re read and tried to comprehend side effects , what this drugs does and what brain function are being effected, ect... then you get a little knowledge and you what to be part of the process and then you get labeled non compliant by your doctors, no i just choose what you are going to try next and for how long. so 7 years later, many doctors, second opinions, no more. i still see my nero and i tell her what i'm doing. i have been on a more natural course for 3.5 years now with the good folks here at clusterbusters. i take d3, lowers my pain, lsa seeds, legal to get, no trip either, only natural stuff for me now, can not take the side effect any more, yoga, meditation, still lots to read and learn, you go through a process with ch and you will find a place that's best for you, thank you for supporting, peace
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