Jump to content


Advanced Members
  • Content Count

  • Joined

  • Last visited

  • Days Won


sontye last won the day on July 10 2018

sontye had the most liked content!

Community Reputation

7 Neutral

About sontye

  • Rank

Recent Profile Visitors

The recent visitors block is disabled and is not being shown to other users.

  1. Thank you CHfather, I am for sure still moving forward to get the oxygen...I would love to see it down to 15 minutes that would be a game changer. Thank you, Sontye
  2. Thank you Batch...I have started that regimen it is making a huge difference!! Posting here so others know it is working!!! I'm so happy that everyone shared it, it's been amazing I have cut my attacks down from 1-3 hours to less than an hour, they haven't stopped being a daily thing but my hopes and faith are high that it will happen. I am very greatful for all the input and assistance. CHfather sent me the link right away and I had a ton of input so to all of you thank you for the support you provide to us it's so nice! -Sontye
  3. Updating...I have been using the d and the energy drinks. The 5 hour shot energy drinks have made a world of difference and I am getting into taking the d regimen...so far and I am deep into my cycle...I normally last 1-3 hours with these on board I have been under an hour with every attack holy cow it's been amazing! I am so elated with this I can't thank you enough for the extra time on my life with all your help, thank you all so very much!!!!!!!!!! Still working on everything else (moneywise and yadda yadda). -Sontye
  4. Hello Rich, I am also a newbie here. I have had CH for a little over 4 years. My episodes are 4 times a year from 4-6 weeks. My attacks last from 1 hour to 6 depending on the evening. I am nocturnal. I also have lingering pain. My gland under my tongue will stay swollen sometimes almost the whole next day subside and then I get my next attack. The pain in my teeth as well as my head and my nose stays as well especially if I go over an hour. I had the CT's MRI's etc. I was glad to rule out brain issues MS etc. at least it left me with an answer that it was not other issues. It ga
  5. Dallas, Spiny, CHfather: Thank you! I will get the regulator/non-rebreather I'll see what I can get my hands on. Thank you for the strings and the d3 info buying everything today, I have some of it so will start and also ask my primary to pull my blood to see where I am to start with. Again I can't thank you all enough this has been a really good experience for me and I hope it's ok that i may be throwing a few more questions out there as time goes by. Thanks!! Sontye
  6. Hello, I am a newbie and came to this site almost for the same reason you did, plus I was looking for some alternatives to help me. I do have a wonderful close knit support group so I am lucky there. I have a little different situation as I am a woman and a mother of adult children and a na-na. I have scared my children with my CH, I have scared my co-workers with my CH. I have scared my husband with my CH. So far I have been able to avoid the little ones because they are usually pre-occupied. An innate thing about pain and sickness that humans often have is to leave it or dist
  7. HI, I am new here and poking around, I hope it's ok to say something. I too have noticed if I am on my tablet I will experience a greater "hit" as well. Just so you know you aren't alone...and I see I am not either so it's helpful for me as well to read your experience. I have had mine for 4 years. When I first got them it was not a pattern right away but it did develop into one and I am nocturnal. Initially it was during the day for a minute. My thoughts go out to you for less pain !! Sontye
  8. Apologies, I forgot one more question. My cycle is 4 times a year I'm usually 6 weeks on and about 8 weeks off (I think). Like I said I used to keep a log, after 2 years I stopped. With the d3 do I only do it when I am starting into a cycle or do I just do it all year? Thanks!
  9. Hello and thank you for the welcome, I figured the o2 was like that. I actually have some in the shed (I do not know how old it is though, we do weld I just never considered it). Neuro - yes nice guy but straight racquet said because I really didn't have high blood pressure has to monitor the verapamil for some reason? IDK I just decided, I am living with this CH it's got a life of it's own and I want to do what I can to manage what I can and not be so anxious. I have even come to terms that "this is going to hurt here we go" the first few years I just cried and tried to fight it,
  10. CHfather...Thank you for all the assistance, I thank you very much. This has been really helpful to me and I will see what I can do regarding the o2 I know it is a great tool for me, I just gave up because of the doc and frustration. I am glad your daughter has a family member like yourself and I know I say it a lot (but I only say what I mean) you are appreciated!
  11. Question regarding the oxygen, I am presuming that it is just regular oxygen, i mean what's the difference breathing that compared to what they offer at medical grade...can't imagine it's any worse than being in the city? Thank you for that information. The prednisone was not too high for the whole time and then the doc would tell me to just stop after. I would taper only because I was afraid of side effects, I did not like taking it because of the side effects. I was affected by taking it. This was one of the reasons I decided to just see what I could do as naturally as possible and
  12. Me again, I meant to ask about the welding oxygen. Could you please advise on that as well. i stopped because of the cost. Also history wise...I have never had an attack that was shorter than an hour...my usual is 1 or more hours and if I do get a short one...I will then have another not shortly after the relief happens from the first (at most a half hour between). The longest one I had was 4 1/2 hours and it was really bad. I used to keep a log, probably for the first year and a half...i have since stopped looking at the clock or writing it down...seemed to me that all t
  13. Hi, Thank you for responding to me I really appreciate this!!! Some background, I was on verapamil time released 250 twice a day it took about 2 days to work, along with the prednisone I think it was 5mgs a few times a day. I stopped because the cost was crazy and I am a regular jane worker with paycheck to paycheck income so 290 dollars for the verapamil and then the prednisone and the rental of the oxygen and mask and yadda yadda, plus the neurologist monthly to get the scrip at 45 dollars a pop for a "specialist" and always feeling poo pooed when calling the office to try to get
  14. Hi, I currently am medication free outside of going to go get botox injections on my own accord. I tried oxygen and it was not prescribed properly and my insurance also will not cover for me to have it. I randomly decided to try botox and for what it's worth it does dull the pain down to a 9 from an "oh my god just knock me out" level. My bouts range from 30 minutes to 3 1/2 hours (or more) the later includes vomiting and wanting to shoot myself (which I wouldn't do but if someone would knock me out I would be grateful at that point). I was on Verapamil (with hesitation from the
  • Create New...