Jump to content
ClusterBusters

sontye

Advanced Members
  • Content count

    15
  • Joined

  • Last visited

  • Days Won

    2

sontye last won the day on July 10 2018

sontye had the most liked content!

About sontye

  • Rank
    Member

Recent Profile Visitors

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

  1. sontye

    4 years and still going

    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. sontye

    Just got diagnosed

    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. sontye

    4 years and still going

    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 gave me some peace of mind and reference for moving forward. My neuro also tested me for seizure activity (which I was clear of). Wishing you less pain, Sontye
  5. sontye

    4 years and still going

    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. sontye

    Having pain downplayed

    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 distance themselves from the fact that you are "sick" the people around you are also going through stages with trying to figure out how to "help" you or if they are going to "help" you. It took my husband some time to understand CH because I will get a "hit" and then it's gone as fast as it came (shadows I don't really talk about) one minute he was thinking he had to dial 9-1-1 and then poof ...hey I'm ok. He took maybe almost a year to understand exactly what was happening. He was conflicted as well watching me or deciding not to watch me and walk away he also felt "helpless, confused, scared, sad" but it was because he didn't know what to do or what was happening and I'm glad my family does not ever have to endure this. Some people around me down play it and don't want to talk about the fact that I have this, so we don't talk about it. I got printouts for my husband, medical information for him to read, I helped him (and myself) learn more about it so he was armed with information to be aware. Now he speaks for me if there is an attack coming as more often than not he notices my eye before I do. I am a beer drinker, love my beer ... while in a cycle...NOPE...and if I do, Holy Cow I pay for it and full well know I will. I love poker and cards with my friends Fridays we stand by a fire...BAD IDEA ALSO (for me)!!! It has been a learning cycle for everyone around me. Some people will be there for you and some people won't. But I see you are a young adult person, this is going to be true for a lot of things to come in life so I will hope for lots of support for you. I hope through your journey you find good people to surround you in everything you do not just in times of need but through all your experiences. Take care!! Sontye
  7. sontye

    Just got diagnosed

    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. sontye

    4 years and still going

    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. sontye

    4 years and still going

    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, relaxing (as best you can in that pain) seems to help a tiny bit physically but mentally it really helps me deal because I can't make it stop so accepting has to be part of it for me. And for the folks that take the meds I hope that gives them some sort of relief I really do it just wasn't much different for me from the natural and the pharma. My kidneys started to fail my numbers dropped huge so I stopped, dialysis and ch hell no!! D3 - I printed it out and I am definitely trying it. I will see how it does for me. I am also trying the benadryl. V8 helped some last night. I will try it beforehand as well as you suggest. I printed it out. Question...do you all experience the day after forgetfulness underwater type feeling? I was just wondering if that was just a thing I encounter or if it is a shared experience. Thanks, Sontye
  10. sontye

    4 years and still going

    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. sontye

    4 years and still going

    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 make it through.
  12. sontye

    4 years and still going

    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 that produced for me was more anxiety, crying, anticipating etc. When i start a cycle it picks the time and stays with it for the most part, but almost always at night. i have had 2 cycles that switched me to days (having my druthers I prefer the nights, I am not in front of as many people). Thanks Sontye
  13. sontye

    4 years and still going

    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 it filled without having to go in...nope gotta come in...and the doc is 2 hours away. I know it almost sounds self destructive to stop but in weighing how well does it work compared to when I do it on my own it really was about the same so medication free (debt free) is working about the same. So I am all game for other alternatives here. I have found drinking red bulls has helped me never really realized the ingredients in there but I think the taurine part is in there. caffeine is helpful I chug a mountain dew. So I will look into the pills. I am hoping this responds to both posts? I guess I will see. I will for sure try the v8 energy drink. Cold air actually triggers me to have a worse attack...I have tried it...Hot compress on my necks seems to help some, hot shower only if I am not full blown in it. I will try my hands and feet though. I have become more aware of when an attack is coming so I do sit up, this does help a lot. I try to get up and move but, for some reason my attacks take my legs away...I can not walk well at all I can barely form words and the next day my tongue stays swollen so I actually slur some for a while. The gland under my tongue gets huge that is one of my "hey it's coming" notifications from my body. I have copied and pasted this on a paper so i can try some of these things, I am in a cycle now so I am excited for something to work additional...I thank you very much for this!!!!!! Really as I type with tears in my eyes, really thank you!! I will read up on the D3 and everything you all put here. I have been following this site for a while, I was afraid to write anything so i am glad I did. Again Thank you!!! My family is awesome, they don't understand but they are awesome, you are right I am very lucky for that. My husband does the same he walks or carries me to where I need to go brings me the toilet paper to blow my ever running nose and eye and asks if I need anything else, then quietly steps away and keeps others from coming to my "aide" as he knows there is nothing to be done. With much appriciation -Sontye
  14. sontye

    4 years and still going

    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 Doc) and prednisone (which turned my beautiful smile a lovely tinge of yellow). I was also put on a lot of other things, went through CT's, MRI's, etc. etc. prior to the docs finally figuring out that I had CH. I like my beer so when I get my bouts I have to say goodbye to that for at least 6 weeks and then I get a break of about 8 weeks and then they are back on again. I guess I just wanted to reach out, for the first time, to someone who understands my anxiety, and confusion. I feel bad for my family members that have to see me endure this. I am a woman so I always feel like I am a burden when this is happening (okay, I am not boohooing here I'm just old fashioned and I take care of most of the family, chores, etc. with a very big smile because it is what I love to do) and I feel I am supposed to be stronger than this "headache", which kicks my a** literally. I am exhausted afterwards and can't get up to make dinner or do my normal thing. I feel like I've been run over by a truck for half the day the next day. When I first got these it was from nowhere. I have had them now a little over 4 years and am somewhat used to them and my pattern. They have become the norm for everyone around me. I say "ok bustin' out" and off I go to some spot to endure whatever it decides to provide (my pain level is usually never lower than an 8-9). I am a very outdoor person and very social so often times I am not in the comfort of my own home. I choose not to allow CH to stop me except for the minutes/hours it takes to get through one. I am also a night CH sufferer, usually about 30 minutes after I go to sleep but there are a few day time episodes here and there (scared the crud out of my co-workers one afternoon, that was embarrassing!!!). I have become very good at breathing exercises, which help a lot in the beginning until it gets in my teeth then I am a wreck. I guess where I am going here is thanks for letting me vent. Everyone around me is hugely supportive but no one knows what this is and how much it hurts and how anxious it makes you knowing when whatever o'clock rolls around and here we go. Anyways, I digress...here's wishing you pain free days and less anxious times.
×