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outofcontrol

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outofcontrol last won the day on October 15 2016

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About outofcontrol

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    South Louisiana

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  1. outofcontrol

    Looking For people in South Louisiana

    HAD A BAD COLD LAST YR DURING MY CYCLE AND WENT TO SEE MY GENERAL PRACTITIONER. TOLD HIM I WAS ALSO IN MY CYCLE OF CH. HE SAID "YOU SUFFER FROM THOSE" I REALLY HAVE SYMPATHY FOR ANYONE WHO SUFFERS FROM THOSE TYPE OF HA'S. HE SAID HE WOULD PUMP ME UP WITH STEROIDS WHICH WOULD KNOCK OUT MY COLD SYMPTOMS AND WOULD PROBABLY STOP THE HA'S FOR A WHILE. HE WAS RIGHT , WENT ABOUT 4 DAYS W/O A HA, THEN RIGHT BACK ON COURSE WITH 3-5 A DAY. WAS A HAPPY PERSON WHILE IT LASTED, BUT CAN'T TAKE STEROIDS W/O HAVING EYE PROBLEMS AFTER. STILL WAITING ON MY FARMER TO GIVE ME SOME GOOD NEWS, BUT STILL NEED TO FIGURE OUT HOW TO GROW MY OWN BEFORE THIS BEAST COMES BACK WHICH SHOULD BE IN A COUPLE OF MONTHS
  2. outofcontrol

    Looking For people in South Louisiana

    nolaNancy- let me know how to get in touch. been suffering for 33 yrs with this. I live about 1 hour from N.O. in Thibodaux.Saw a Dr. in Chalmette last yr but the meds she prescribed DID NOT WORK. My only relief was oxygen. Busting has always been the way to go--sometimes 2 yrs w/o ha's with strong dose
  3. outofcontrol

    How to fight anxiety and depression from CH

    I know exactly how it feels. When I know my cycle is near I get very anxious and when it starts I do become depressed and feel like I'm living in a box. I still do my job, but I'm not sociable with co workers. They think I'm an ass for 3 months. I don't want to be but I have the constant fear of "when is the next one going to start" Hard to live like that . Then again they always give their input as "they can't be that bad or here take 3 Motrin. Really!!! Hoping that the new trials going on for the chronics can shed some light to approve these meds for all to benefit from
  4. outofcontrol

    Looking for Direction...

    Have now gone about 2 weeks without a HA. Tore 2 calf muscles about 3 weeks ago so was dealing with 2 kinds of pain at 1 time. Going back next week to Neuro Dr for a follow up and to let her know that the Migranol nasal spray/Indomethicin and Opiate nasal spray DON'T WORK. Oxygen was my only real helper this round. I am now getting ready to buy the supplies needed to start my own MM grow kit. Seen several posts but would appreciate any input to help me get started so I will have the ammo needed to fight this beast when it comes back. Had a late cycle this year---usually April--June for my regular cycle. Also will wait for the fresh ones when the weather is right on the cattle farm and bust ahead of April to try and block the cycle before it starts. MM always were the best remedy I have found to beat this
  5. outofcontrol

    Looking for Direction...

    Yea that's correct---my insurance will not supply anything larger. I will have to go to Airgas for a larger bottle and pay for it myself. That's ok since I will bring the smaller bottle to work and leave the large tank at home since most of my CH are at night anyway. Yes the Stadol is a joke--so I now know that even Morphine can't touch these Ha's. The mask I have is a non-rebreather which we also use in the clinic I work at. Not as big as the one on the site you referred me to. Been taking the Indomethacin now for about 3 weeks----no changes. Oxygen is my best friend as of now
  6. outofcontrol

    Looking for Direction...

    I do need to work on the breathing techniques and get a CH mask shown ( I suck the standard 1 flat ). I need to get a bigger tank since my insurance only will supply a E tank( only 5 a month) which I go through verrrrry quickly .I do use energy shots now but have to be careful due to HBP. The Stadol she said is a morphine type pain reliever ( didn't work last night). Imitrex is out--was my best relief for yrs even with the rebounds but had a bad reaction a few yrs ago --bad chest pains and couldn't catch my breath. Heart checked out ok the next day--told to stop injections. Verap no help. I have been prescribed about 20 different meds used to treat CH to no avail even increasing the dosages to crazy levels which had me really screwed up physically ---oh and steroids which helped but had to stop before they caused damage. I found the area here where I can get a unit to grow my own MM. Feel it is a good investment. I work in the medical field and know how a lot of big PHARM meds can do real damage.I really want to thank you CHfather for all of the good info and for responding to me. I would only come to the site when I was in cycle, but I will be here year round to really keep up with everything and will try to accept my invite to the convention next yr---haven't gone yet to one
  7. outofcontrol

    Looking for Direction...

    Found a new neuro to see who deals with several CH patients. Started my cycle 10-7-16 and what a horrific one this is( 1 of the worst in my 32 yrs of this hell). Filled out forms before visit (prior meds taken). She spent 1 1/2 hrs of questions and Physical testing. She decided since I had never tried these meds we would give it a shot. On my way home went to family DR for a cold . I told him about my neuro visit and wanted to make sure his meds didn't counteract with my new ones. When I told him I suffer from CH he knew exactly what I was going through. The Prednisolone injection he said would help the HA. Sure as hell went 3 days w/o one. Now they're back. I used to have 1 a night @ 11 pm, now 6-8 a day ranging from 7-10's for the last few yrs when my "busting" supplies are not in season. new meds are Indomethacin, Migranal NS and Stadol. The migranal works for 1 hr and it's back again. Followed this with the Stadol and instant relief but the beast was back in 1 hr again. Sounds hopeless. The 1 good thing is the oxygen I finally have after all these yrs of suffering. The neuro couldn't believe I never was prescribed this before. It relieves the pain but not totally (manageable) 15 lpm . My only real relief is MM which break the cycle till the next year. Hopefully they will approve this treatment soon so we can get to a somewhat normal life. Sorry to bore you but no sleep and this beast beating my ass is getting old.
  8. outofcontrol

    Looking For people in South Louisiana

    Let me know when you get there and I'll get you contact info
  9. Hoping to find local CH sufferers to get together with and form a local support group to help each other during our time of need.
  10. outofcontrol

    FAMILY TRAITS

    I was wondering about my family history of cluster ha's. My neurologist stated someone in my family had to have these ha's in the past. After speaking with my Mom she said her Dad used to have these ha's just like mine when she was a young girl. They would last several months and go away for a while only to return again. Well I have them, my brother has them, and a cousin on the same side of my family has them--but he has auras also. The strange thing is we are all color blind. Any input on this??? Do many CH sufferers also have color blindness?? Strange
  11. outofcontrol

    Can alcohol prolong a cycle?

    Alcohol is the biggest trigger for me. My CH usually start May or June and last for 3 months everyday 1- 6 a day. After I found out about busting tried it and was HA free till next yr. Once they started I busted again and like magic gone again. I figured after about 2 weeks I would be OK and had 1 beer. Kinda felt a burning in my left eye and left nostril. Opened another and drank about 1/2 and bam the beast put this CH in overdrive. Everyday after. Waited 1 week and busted again. Thankfully it worked. Now I stay alcohol free for the 3 months and wait another 2-3 weeks before I drink again
  12. outofcontrol

    Precursor to episode

    Thanks CHTraveler I'll stop my pharm on the way home. Sounds like a winner since trying to hold the ice pack is a problem when you feel like someone's beating you with a brick and I can't sit still.
  13. outofcontrol

    busting but sick of doing this by myself

    elpo I know how you feel. I have been suffering for 32 yrs with this condition and sometimes I feel I can't do it anymore. My son moved out 2 yrs ago to St Louis and now I live alone in Louisiana. I have family near by but when this beast strikes it is unbearable sometimes. I won't give up --never-- too much to live for . I will beat this 1 ha at a time. My neurologist had me on many many meds that didn't work. Can't use Imitrex anymore. MM have helped and put me in remission for 1 yr after busting when I can get them. I work in the medical field so I keep a low profile on non traditional treatments. I seem to only visit this site after I start my LIVING HELL. I now resolve to be here on a regular basis to stay ahead of this BS condition. I am currently in my cycle and in desperate need of just a little sleep and the weather to get right for some meds. Hope all gets better for you. Hang in there. I will check out more posts for some types of relief for now
  14. outofcontrol

    Precursor to episode

    I've been suffering with CH since I was 21, now 53. Doctors always said it was tension ha's. Moved to Texas in 1990's and met a Dr from Belgium who I was seeing for a cold. She asked if there was any other problems I was having. Told her I had just gotten over a series of ha's that lasted several weeks. She asked several questions and told me "you have what's called Cluster Ha's". Gave me a book to check symptoms and had all of them. Started me on Ergostat which was a dream come true--- company quit making them. Back to square 1. Moved back to Louisiana and had a neurologist start me on a variety of drugs which many are seen on this site----none worked and some very expensive. the only drug that worked was Imitrex injections till 7 yrs ago when I had a reaction---extreme shortness of breath and chest pains. Next was MM. the first time was CH free for the rest of the yr. The next yr they were back (always May-August) busted again and to my amazement went 2 yrs w/o a CH. Now I try to bust at least once a yr. Had been shadowing for a few months and thought I'd be ok, but tried 1 Cialis and wham bam Living in HELL again. No MM now due to weather conditions and in the last 3 days -2 nights no sleep and 1 night 3 hrs sleep. My co workers think I'm full of it. "It can't be that bad" I would like them to have only 1 and let me know how you feel in the morning. One thing I have tried is chugging a Coke and applying a ziplock bag with a lot of ice and a little water to affected side of neck . Subsides to a much tolerable level. Hoping to find some relief (MM) soon to kill these for this period. I've been on here since 2014, get on only after ha's begin. Now will be here on a regular basis to stay updated and an involved member.
  15. outofcontrol

    Question about kinds of mushrooms

    I read a few yrs ago about the research with LSD & mushrooms and how many had good results. Been suffering with CH for 30 yrs. tried all the meds with NO results. Imitrex injections were the only thing that worked, but hated the feeling. As a former "character" of the 70's I knew about both. Read a article that had a recipe for mushrooms. made a batch and was ha free for 2 yrs. then all hell broke loose again. made another batch and went almost 2 yrs again. now they're back with a vengeance. mine come from cow dung shrooms-10 boiled in a cup of water-steep and enjoy sending those ha's back to hell
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