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Showing content with the highest reputation since 11/25/2022 in Posts

  1. Hey CH family, just wanted to check in. I am still managing my headaches pretty well. I haven’t had to bust in a while. I also haven’t had to use my O2 tank in over a year…YES I am serious. It’s been forever. I haven’t even renewed my script for it because my insurance doesn’t kick in til January…oh well. I dare to say I might even take a flight soon…I have been terrified to fly since my diagnosis in 2019. Also I have really bad anxiety when it comes to flying. Any advice on flying and Ch? I’ve asked this before, and I’ve read almost every post on it. Just wondering if anyone has any new advice or suggestions. anyway, I hope everyone has a safe holiday month coming up. Things are crazy out there. Still eternally grateful for you all and this site. Cheers kat
    7 points
  2. Hey Kat!!! Great news to read! Flying: Carry energy shots or caffeine pills with you. Shots are tiny and you are able to board with them. Some will tote a few SPUT's in a convenient place to stick one under the tongue before takeoff. Others take ginger candy with them! The TSA's mean it when they say 'We're only looking for explosives' - they are NOT doing any drug checking from what has been seen, so no worries there really. I know some herbs were on that flight too. Many will do a preventative bust shortly before their flight day. Maybe 2-3 days? If you get your O2 renewed, you can call the O2 server at the other end and have O2 waiting. It does require a script though. Take your regulator and mask with you! I flew for the first time in over a decade to the Dallas Conference. I was terrified! But, it all went smoothly. I had shadows on the other end, but they were easily handled. Best of luck and Happy Holidays!!
    5 points
  3. ...hi Snowflake....good to hear from you but sorry it's because the beast is screwing with you... ...i don't know how common this is with CH, but have seen it mentioned several times, mostly as a side note in research and medical articles/papers....and on occasion in discussion by clusterheads.....you aint any more cracked than the rest of us! it's a thing, but apparently moreso with migraineurs. not reported to be harmful beyond annoyance in anything i've read... ...i made my living with my nose so it was more intriguing than alarming for me...tho i must admit it pissed me off and i used to hunt down the source until i finally figured out "And no one else can smell it. It feels like it is coming from within myself even exhaling through the nose senses it." thankfully transient, so never interfered with the job. multiple variations but burnt plastic, manure, and sewage were the most common and yuckiest. it IS the weirdest damn thing..... ...never could associate with any particular med and not recalling at what point in cycle it was prevalent...or even when ECH, if only during cycle...
    4 points
  4. That was a very nice post to read. I wasn't around in 2019 as I was still in the mess of figuring out what was wrong with me so I dont really know you'r story but I can imagine. I am also terrified to fly and have read all the threads on it as well, but I don't recall seeing anything new in the way of tips, tricks etc. It sure would be nice to hear back from you with how the flight went for you (hopefully seamless) and if I missed any new info on altitude success etc. I would love for our CH community to post here on it.
    3 points
  5. Happy Thanksgiving you lot! Many prayers sent your way on this Thanksgiving eve! Be well, eat 2 much, enjoy family and most of all keep the door to the cluster bunny tightly closed! Thank you all for being here for all of us!
    3 points
  6. Hey @jon019 Good to hear from you too. I hope you are ok. I am out of cycle and your response answers my question especially knowing I'm not losing organs lol. But yeah the smell is on and off and is really for me, scary. I also tried some research on it and how ironic that it is only a few people that are affected and is quite rare just like Ch. I must stress that it is a "ghostly" smell. otherwise, I am good. The reloading worked wonders and I was snatched back to life as @xxx reloading schedule is extremely effective. Been pain free for few months now. Sticking to maintaining and just trying to tapper off antidepressants and pain killers which I abused by force over the last good couple of years. It is difficult but I am trying really hard. Just find myself relapsing just as I am nearing my goal because of incidents that occur like my mum got sick and ended up with shingles inside her ear which is rare but I can imagine the pain at her age, then my dad had who also has both his hips replaced as well as both his knees, ended up not long ago in hospital to have his ankle bone scraped down however the wound is taking forever to heal since it's on a movable part, no my brother came down yesterday from Johannesburg to see a specialist to remove a growth on the side of his face which is rather large and near the ear. He goes in on Monday to be admitted to hospital and Tuesday is the rather intricate operation as they need to bring in ENT specialists as well to see which angle to approach this thing from. Then all our vehicles are troubling at once. So all this stress is just making me grab more meds to cope since I don't drink alcohol so the go to thing for me are pills unfortunately. sorry for the long read and take care buddy
    2 points
  7. She has blown my mind with her strength and determination @Bejeeber
    1 point
  8. Home PERMANENTLY before Christmas??!! What incredibly good news Shaun, so glad to hear it. Does she continually astound with her progress or what?!!
    1 point
  9. Well everything went to plan . We worked really hard to get the house safe for daughter to come home . Also had to move her bedroom down stairs . As it stand we could have her home permanently the week b4 Christmas.
    1 point
  10. 1 point
  11. That sounds similar to what we call shadows. Very common for Clusterheads. Switching sides is known to occur also, but I don't recall hearing of another instance where it switched following the very first attack. That's a really good thing. Not everyone manages that, so good on you @NickMirk!
    1 point
  12. I suffer from cluster headache episodes. They happen every 10 years or so and last up to 9 months with frequent attacks. Home-based oxygen therapy works for me (fortunately) to abort attacks. But what worked for me even better is scuba diving at relatively deep depths. I discovered this by accident a few years ago as I was preparing for a 120 feet dive on regular air. I had geared up and was preparing to dive in when an acute attack started. I was in month 3 of the episode and my morale had been eroded by the frequency and violence of the attacks (at that time, my physician had refused to supply me with home-based oxygen treatment - she was afraid I would start a fire!). We had been planning the dive for days and I thought to myself: "Screw that... I'm going in.". While the first few minutes were made quite difficult by the pain, I started feeling better at 80 feet and the attack vanished when we reached 120 feet. At first, I though this was a coincidence. But as we repeated the 120+ feet dives over the next 4 days, something unexpected happened: the episode was aborted and I was pain free for years afterwards. After talking to my neurologist about this event, he confirmed that there were more reports of busting an episode with diving at these depths. He also explained that he prescribed hyperbaric chamber treatment at simulated depths of 60 feet for cluster headache sufferers. He also explained that at the depths we went to, the oxygen concentration is almost 5 times higher than at surface level (approx. pO2 1.0 ATA at 125 feet vs 0.21 ATA at surface). This was the equivalent of a mammoth O2 treatment. I don't suggest here that anybody go out there and try this. Diving at these depths require special training and certification. But if you are a diver who is qualified and who suffers from cluster headaches, consider it. But make sure that you are comfortable at those depths (i.e. not anxious) and that your buddies are aware of your condition and what you are attempting to do. Frederic
    1 point
  13. So, is it 2 down and 48 to go now?
    1 point
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