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  1. Today
  2. The only time flying got me was when I was dumb enough to drink a couple beers before a flight. It was a nightmare! I flew about 60 times that year and the rest were fine. Crazy thing was it was just one giant attack with no cycle.
  3. Yesterday
  4. The adaptability of Clusterheads is notoriously strong Jon!! Has to be!!!! LOL
  5. .....i'll chime in too....same fears but dang it, there was stuff to do! more than 20 trips and never hit once in air or just after. carried imi or zomig and energy drink on plane just in case, oxygen at the destination usually through Lincare travel program. you adapt, clusterheads are good at that! get your well prepared first one out of the way....it gets less anxiety inducing every time after that......
  6. Hey Kat, I felt the same way. Perhaps you can find a way to trust it and go visit soon!! Pretty sure that Bosco uses seeds to deal with altitude changes, so that might be another layer of protection to make you more at ease. Fingers crossed that you get it figured out and have lovely get-away soon.
  7. @spiny I am missing out on so many fun vacations and times with my family due to fear of flying. I want to fight it and get on with my life
  8. Last week
  9. If it is migraine, you would think that the rizatriptan (Maxalt) would help, since that's what it's for. It NOT a cluster headache medication (or at least not a first-line CH med). Not saying it isn't migraine, of course, just observing. I will jump to my usual possible diagnosis (NOT a doctor) of some form of hemicrania. The eye droopiness and watering are symptoms of hemicrania, and the continual pain with occasional explosions could fit, too. Hemicranias are typically resistant to triptans (although it's possible that the "painkilling shot" that helped you was a triptan, and as I've said, rizatriptan pills typically don't help CH in any event, so that isn't much of a test). Here is some information about one form of hemicrania: https://www.webmd.com/migraines-headaches/hemicrania-continua-symptoms-treatment Another is paroxysmal hemicrania, which you can look up. A "good" thing about hemicrania is that there is a highly reliable preventive, Indomethacin. There isn't enough info right now to do anything but guess and be sure all the options are being considered. I am just providing this information so you can be sure you and your doctor is considering/aware of all the options. For all I know, it could in fact be sinus-related and/or Covid-related. You might want to look over this file, just in case -- https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ -- and maybe you'd want to try some strong coffee or an "energy shot" such as 5-Hour Energy, since those typically help reduce CH pain. Doctor oddities appear much too often: In this case, diagnosing CH (that's a good thing, if she is correct) and then prescribing a migraine medication that is explicitly not for cluster headaches (https://www.mayoclinic.org/drugs-supplements/rizatriptan-oral-route/description/drg-20065868#:~:text=Rizatriptan is used to treat,group of medicines called triptans.). If this painful situation continues for you (I hope/we all hope it doesn't), you're likely to get the best diagnosis and treatment at a headache center.
  10. SusRe

    total newbie

    to be honest it could've been more than one headache or a continuous one or a headache that went away and then came back. The day I was in to see here she gave me a painkilling shot also and I was fine most of the day until evening when the pain started intensifying by evening, The OTC helps the pain and am able to function to a certain extent until it gets stronger and then basically explodes. I guess the Dr is looking at it being a cluster because i's in the in the same spot behind my left eye and the droopiness and the eye watering and no auras or light sensitivity. Can other migraines present like that? I'm just hoping to hang on until Monday and see what else she says or has something to try or can send me to someone more knowledge. Thanks you for taking the time to help.
  11. I'd agree with @BoscoPiko. To me it sounds more like migraine. Not sure why a doctor would diagnose cluster headache after only one attack. I would think they would want to hear of a cluster pattern before making that diagnosis. As noted, ibuprofen/ acetaminophen don't help for cluster headaches. Not to downplay migraine, as they are also very painful. But, to me, it doesn't sound like cluster (which is good news).
  12. Not sure if there is a correlation with the "onset".. Seems to me that you get it or you don't... (genetics unfortunately do play a roll) , unfortunate event either way indeed. During the effort to control the bunny.. YES there is what I believe to be a correlation. If your system gets drowned/depleted due to any infection/virus it is my personal belief that the door gets opened due to depletion of of the immune system and inability to respond properly. I say this because I was diagnosed with a chronic sinusitis nearly 12 years prior to the onset of CH. I have had several attacks after being sick and after sever bouts of allergies that have opened the stage for the cluster bunny to preform. The meds you mention putting a damper on the pain are not indicative of CH. I'm not saying you do not have it... The above is pixy dust to a Cluster Head.. Does noda .. Absolutely will not touch anything but shadows "if your lucky" To me.. this sounds like "migraine with aura" dreadful for sure and I've been wrong many, many times ! I pray you do not have CH and that a decent Dr. can sort this mess out for you!
  13. Total newbie here, just had my first cluster headache 5 days ago. At least that's what my dr "thinks" it sounds like. I did get am MRI and it came back good with only sinusitis showing . I've had cold from hell at the exact same time...could there be any correlation between having a sinus infection and the onset of the cluster? Dr prescribed rizatriptan which didn't help at all. I feel like my headaches build until they get to a certain point and then explode and are pretty continuous. My left eye is droopy and watery, only had one very short aura at the onset of the first headache and am not sensitive to light. Right now Advil Dual or Acetaminophen helps the most but of course I have to take them about every 5 hours around the clock which puts me at over double the recommended daily dosage. I have to wonder if Covid has played a factor as I had a terrible bout close to a year ago and all sorts of weird things keep happening. I hope to get in to see my primary Monday but I feel lost and would love any advice offered. Thanks so much for any insight on this hellish thing!
  14. Yup. Lots of discussion about this on the forum earlier in the pandemic. Definitely seems like a relation. That said, people that have found it happened to them are probably more likely to reply in those threads. So, it may not be as statistically common as it seems when reading the replies. I can say that for me, my last cycle started only a few days after recovering from COVID. And that cycle ended up being three times longer than any cycle I had previously. As snafu noted, the belief is that vitamin d levels get low in the body while fighting covid (or other), so, I guess that can trigger a cycle.
  15. Not always, but, on a lot of my cycles in the past; I have gotten a really weird lower kip attack that would last a solid 24 hours. Not like my normal attacks that last an hour. Pain in the same spot, but, not a typical CH attack due to the length. Probably like a kip 5, but, can't sleep, and with it being so long, it's brutal. That said, I always know when I get one of those, that the cycle will be done once I get through that one. Other times, when I haven't had that, it's been like others described. I just feel like a fog has lifted, and just sort of know. I'll usually wait 1 or 2 weeks before doing a beer test.
  16. For me I am in the middle of a new cycle. Was in remission for over 2 years. I am re-learning the tips and tricks to managing pain. I think I know the end of a cycle is coming when the pattern becomes less predictable and the headaches become more erratic. I hate the uncertainty but know im one bad attack from them disappearing for another year.
  17. it is believed that the inflamation caused by infections can trigger ch. search "full monty" on the boards for futher details how to get this under control. good luck! please report back
  18. Yep. Cycle started just on the tail end of COVID for me and out of season. Still going…7 months later.
  19. xxx

    Phantosmia

    Quick Note to All. Disclaimer: The following is for information and educational purposes only. See your PCP before starting vitamin D3 therapy and obtain lab assays of your serum 25(OH)D3, calcium and PTH. If your 25(OH)D3 serum concentration is below 30 ng/mL (70 nmol/L) you really need to start vitamin D3 therapy The anti-Inflammatory Regimen is very beneficial to all of us even if we don't have CH or migraines. Rationale: Vitamin D3 at the suggested doses boosts the innate and adaptive immune system and that is HUGE as our immune systems keep us healthy by fighting off disease, inflammation associated with trauma from injuries and surgery as well as other autoimmune disorders. For example, the surgery required for knee or hip replacement will cause serum 25(OH)D3 to drop by 70% in less than a week following surgery. That opens the door to longer more painful recovery times. The really impressive thing about taking vitamin D3 a few weeks before planned surgery is the surgical wounds heal very rapidly with minimal risk of infection. Moreover, sufficient vitamin D3 lowers the need for opiates to control the pain from surgical wounds. If it's an acute injury, start vitamin D3 therapy ASAP at a minimum of 50,000 IU/day then taper to 10,000 IU/day with the liquid softgel vitamin D3 formulation or 50,000 IU/week with the Bio-Tech D3-50. Vitamin D3 is also a fantastic treatment for Shingles (Varicella-Zoster virus (VCV) infection - a.k.a., Zoster). 50,000 IU also stopped a progressing VCV infection (I was asymptomatic) in a matter of hours and 100,000 IU of vitamin D3 cleared the infection completely in less than two days. The standard vitamin D3 dose with the liquid softgel vitamin D3 formulation is 10,000 IU/day or your can compute it at 125 IU/Kg (57 IU/lb) body weight/day or multiply this amount by seven and take that once a week. This dosing schema is good for 6 lb infants up to the Big & Tall adults. If you're burning the Bio-Tech D3-50 illustrated in the photo above like me, one 50,000 IU capsule a week is a great dose. This is because the Bio-Tech D3-50 has a much higher bioequivalence than the same dose of the liquid softgel vitamin D3 formulations. Here's the real biggie... This vitamin D3 regimen and treatment protocol is also effective in preventing and treating COVID-19. Watch the following Youtube video of Dr. Campbell as he explains results from the largest study of its kind treating COVID-19 with vitamin D3. It was found to be safe and effective. A little evolutionary perspective... Our need for vitamin D3 is the direct result of over a billion years of DNA evolution, 420 million years of vertebrate evolution and 200 million years of mammalian evolution where genetic instructions in the human genome evolved to codify our need for vitamin D3 and how to produce it when the 7-dehydrocholesterol in our skin is exposed to the UV-B in direct sunlight… Got that? We need cholesterol in order to produce cutaneous vitamin D3… Taking statins screws the pooch… but that’s another story. Vitamin D3 is so important to good health and human physiology, our skin can generate as much as 15,000 IU of cutaneous vitamin D3 in as little as 10 minutes if exposed to the UV-B in direct summer sunlight at mid day clad in a bathing suit without sunblock. These figures are for people with fair skin color. If our skin is darker, we need to double the UV-B exposure time. Unfortunately most of us haven’t been out in the sun that since we were kids… Working for a living, air conditioning and the skin cancer mafia have seen to that… Living in a sun belt does not guaranty adequate cutaneous vitamin D3 as exposed face, arms and legs are not sufficient to produce the amount of vitamin D3 needed for a healthy life. On top of that, the amount of vitamin D added to milk and orange juice is grossly insufficient to elevate serum 25(OH)D. Accordingly… unless we’re already supplementing with at least 5,000 IU/day vitamin D3… most of us are vitamin D3 deficient for non-skeletal pathologies… a 25(OH)D serum concentration less than 50 ng/mL, (125 nmol/L). You can read all about the supplements and suggested doses, drug interactions and contraindications for this regimen with an Internet search on “anti-inflammatory vitamin D3 regimen.” Take care, I welcome comments... V/R, Batch
  20. Has anyone else experienced the start of a new cycle after getting over the flu or covid? My last cycle was Christmas of last year and started almost immediately after having covid. Now I just got over a seasonal flu and have had 2 nights of clusters. Just wondering if there is a correlation
  21. Earlier
  22. 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!!
  23. For most people, mushrooms are not a cure. They are a treatment. We don't know as much about them for migraine as we do for cluster. There has not been a strain that has been identified to be better than others. Find one where you understand dosing and try following the busting protocol to see if it works. You can always adjust.
  24. The truth is that we do not know what triggers migraine. We have guesses but the research isn't there to back up any of it. If put in an environment where you don't know what the weather is, you don't know what food you are eating, and you don't have any external stimuli, migraine is still unpredictable. Eat healthy, get exercise, stay hydrated. This is the best advice anyone can give someone who is living with migraine.
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