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kat_92

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    kat_92 reacted to Desty in Living with episodic CH.   
    Hello all.
     
    I discovered this community from CH blog, it's nice to see there are other people having similar issues. I spent some time reading posts around forum and can relate to many of them.
    I will give my 2 cents living with CH. Maybe someone will find something useful.
     
    I had my first cycle when I was 13 years old(now 31 YO) and have had cycles basically once a year for a 1 month period with duration of 15 minutes to 2 hours.
     
    When I first had this, my parents took me to numerous doctors(I am from Estonia, Europe, but living in Spain now), back then, they did loads of different tests but was misdiagnosed eventually to common migraine. They gave me basic headache drugs(can't remember the names), which never worked(I was 13 back then, so they couln't really give me codeine of some strong ones). I accepted the condition and literally suffered without any relief for 15 years. The pain levels are severe and always been during attack. I often pinch myself to just not feel the pain behind left eye for a second(yes, it does work :)). 
     
    Lifestyle and CH:
    From my experience, lifestyle does not play any role of CH. Back when I got it first time, I was doing loads of sports, I would saying about 20 hours per week. No smoking, no drinking(I was 13). I started smoking at age of 18, same with drinking. Few hours I use to be quite heavy drinker, I would say 3 times a week and about half a liter of vodka each time. Past few years I have been doing sports again due to weight gain from alcohol. I do not notice any difference with lifestyle or body changes and CH. I DO NOT do any drugs what so ever, even weed(which is considered drug in Spain, yet can buy it freely from dedicated shops without prescription).
     
     
    My common causes that trigger cycles. I figured I will share some of them. 
    Cycle trigger, which I had more than ones.
    -Long term excessive stress with work. A serious issue which haven't been solved for weeks for example.
    -Excessive amount behind computer(15 hours per day for a week, even with highest end monitors money can buy under low brightness settings).
    -Spring, when there is still some snow and the first REALLY bright sun comes out(I live in Spain now, so don't have this anymore).
    -Alcohol does trigger a cycle, when in vacation, had massive amounts for 7 days straight. 
    -Chemical smells(Use to work in car beauty industry, polishing, washing, waxing. When doing longer days at work, cycle was quick to hit me. No issues with normal working hours. didn't wear a mask)
    -Overdosing from energy drinks - about 6-7 per day. Just few days will start my cycle. NEVER drinking red bull with vodka.
    -Over usage of Viagra/Cialis/Kamagra and other ED pills. 50mg viagra tablets or jelly type of cialis/kamagra. 1 tablet does not trigger cycle, but when taking 1 tablet for 4-5 days straight will trigger cycle in a week after using. Yeh, surprisingly, it takes about a week after pills for cycle to start. 
    These are my most common triggers for cycle. My CH cycle doesn't really have fixed dates, it can start whenever. 
     
     
    Triggers DURING cycle:
    -I have to place alcohol to number one. It's just THE worst thing CH brings to the table. I love alcohol, shot of vodka before good dinner, a fine single malt with good cigar. Alcohol triggers it ONLY when I feel it. A beer before lunch generally doesn't trigger as one beer doesn't really do anything for me. Duration depends on the amount of alcohol, I have found a way to still party all night with sumatriptans but next day I will have 10 hour headache which has it's ups and downs in terms of pain levels. 
    -All bright screens - TV, monitor, laptop, phone, tablet. 
    -Sleeping. I don't get headache few hours after sleeping like some people, I get them between 6-8am after sleeping 6-8 hours. Oversleeping will trigger it.
    -Gasoline or other forms of unpleasent chemical smells. Car exhaust, tire smoke included(I do motor sports, during cycle, I can't perform).
    -Sports or other forms of workout, such as sex.
    -Bright sun when without sunglasses.
    -Air travel - HOLY CRAP this is bad. It's the most intense pain when flying high altitudes. Not sure if it actually triggers during flight, as I had it once and I never flown again during cycle.
    -Driving in tunnels! I know it's weird, but it has happened so many times. We have many tunnels over here and usually they are short. About 200-250m, then 500m with normal road and then tunnel again. Change of level of light? I know in medicine some tests are done to cause seizures using flashing light.
    There are many more, but these are most common ones.
     
    BUSTING during cycle with sumatriptan:
    -Few years ago I discovered sumatripans. Oral tablet seems to work best for me, I have never tried injections, as I have no need for them. My favorite, most quickest acting one is imigran NEO 50mg. They sell it in most pharmacy's in Spain with prescription. 4 tablet in package and costs 11 euros. Luckily it's not the drug that locals abuse, so I had same prescription for past 3 years, no need to go to doctor to ask new one. I always had session in morning and evening. With these tablets, I can prevent them. I know it is suggested to take one when pain starts, but I learned that taking one at 5am in morning actually allows me to sleep past 6-8am. So during cycle I have alarm set for 5am. My second session everyday sometimes starts during 1-2PM, but this is not common. Guaranteed next one starts between 5-7PM, so to prevent this, I take again one tablet at 3-4PM. It's been ABSOLUTE pleasure having CH cycles with these tablets compared before. I always have about 10-15 tablets with me when I travel and not once anyone asked in airport security about these. Even in high security countries such as Israel.
    -When pain starts, sumatriptan usually work within 15-25 minutes.
    -Alcohol and sumatriptan, one before first glass/shot of alcohol, one tablet after 4 hours of drinking heavily and pulling 8 hour party session pain free. Yet, next day, no tablet helps and pain bounces from medium to high for long period, 8+ hours.
    NASAL SPRAY triptans made the pain worser. Somewhy my left eye and airway is connected(maybe that is the reason), meaning - when I hold my nose, close my mouth and blow our air, it starts coming out from my left eye. It's rare condition, but not unique. There was even a guy in Guiness World Records, who got a record by blowing a milk from a eye for 30cm-s. He inserted it from nose and then just blew really hard.
     
    BUSTING during cycle without tablets, the days of suffering(I didn't know about the tablets before because I didn't know I had CH):
    -I use to wear a pirates eye lid on one eye when watching bright screens. This helped to reduce the amount of sessions per day.
    -When pain starts, changing scenery. Best one - dark and quiet room.
    -During longer severe session, pinching or hitting myself(obviously not that hard, just to feel it enough). It does not bust it, but helps to break really bad session for a second or two. 
    -Spicy sauce did help me sometimes during session. Just few drops of really hot one and cluster was busted in 5 minutes.
    -Shiatsu massage therapy. It has been proven itself so many times to reduce period of cycle, also reduce daily sessions during cycle. It's the massage, that involves stretching and pushing nerve points with your cloths on. Not a relaxing massage, this really hurts.  
    Now, let's go with some really weird ones:
    -Masturbation during session. Not actual orgasm, but erection. I know it's hard to get there, as pain is bad and watching porn from bright screen makes it even worse. I usually get there quick and when I keep erection for 10 minutes, pain usually backs down or completely goes away. I have so many stories when I am in public bathroom, my jeans down and trying to get erection while holding phone. 
    -Standing on my arms sets. About 5-10 second on my arms, 10-20 second on feet, 5-10 seconds on my arms and so on. Not always this works, but this use to be my normal routine when session started.
    -Light electrical shocks from AA batteries. Literally just touching with your tongue for a second, 3-4 times. It didn't bust cluster, but helped to relief it. 
    I know some of them might sound like a stupid, but when the pain levels are really high, one tries to conduct different experiments to even slightly relief the pain. After testing many of them, one becomes more creative.
     
     
    Thank you for reading,
     
     
     
  2. Thanks
    kat_92 reacted to spiny in Post op. Wisdom teeth surgery   
    Wonderful Kat!!! Happy Recovery!
  3. Thanks
    kat_92 reacted to Brain on fire in Post op. Wisdom teeth surgery   
    No straws for the smoothies, wouldn't want to create probs.
  4. Like
    kat_92 got a reaction from CHfather in Post op. Wisdom teeth surgery   
    Hey all
    I just had my wisdom teeth surgery and it went great! 2 of my teeth were imacted and the doc said they just had to come out. He researched cluster headaches before hand and was able to do the surgery with no epinephrine! Just made me feel sedated and it was over in 30 min. Thanks to everyone who informed me about epinephrine via the forum. Much appreciated. Smoothie time! 
    Kat 
  5. Like
    kat_92 got a reaction from CHfather in Post op. Wisdom teeth surgery   
    Hey all
    I just had my wisdom teeth surgery and it went great! 2 of my teeth were imacted and the doc said they just had to come out. He researched cluster headaches before hand and was able to do the surgery with no epinephrine! Just made me feel sedated and it was over in 30 min. Thanks to everyone who informed me about epinephrine via the forum. Much appreciated. Smoothie time! 
    Kat 
  6. Like
    kat_92 reacted to Brain on fire in New - Looking for Support   
    Welcome to the forum Blair, sorry you need us & glad you found us. You'll get a ton of support & suggestions here. Hang in there. A few nice things about cluster headaches... they don't kill us, they teach us the value of pain free time & we gain a greater level of understanding & compassion for people who live with pain.
  7. Like
    kat_92 reacted to Pebblesthecorgi in Nausea with D3 Regimen & Cofactors   
    Personally I found the fish oil to generate nausea.  The volume of pills may be contributing to the nausea as well rather than the specific substance.  Try dividing the doses instead of taking all at once to see what you might be sensitive to.  I would defer to Batch for final suggestions as this is his baby.
  8. Like
    kat_92 got a reaction from spiny in Nausea with D3 Regimen & Cofactors   
    I split the vitamins up into 3 in the morning and 3 at night. Always take them with a meal. I was instantly vomiting after taking them all on an empty stomach which Wasn’t smart on my part. Good luck! 
  9. Like
    kat_92 got a reaction from spiny in New poster - please help   
    It sounds like classic cluster headaches from what you’re describing and I’m sure the more experienced members will answer you soon. I was prescribed Fioricet as well for “migraines” like 5 years ago. It probably won’t help you that much for this condition. I recommend you start the d3 regimen right away. Many sufferers find relief within a week to one month. It’s something you take all year round. @Batch developed it and he’s very knowledgeable on this. Put d3 into the search bar in the home page and you will find everything you need. I have found everyone on the forum to be more helpful than any doctor I’ve seen (5 neuros over the last 5 years and 1 primary care doc) pretty scary. Hope you find relief soon! You will  
    kat 
     
  10. Thanks
    kat_92 reacted to Pebblesthecorgi in Questions for indomethacin and sumitriptan patients   
    You need to get a solid diagnosis.  You provider is just throwing stuff against the wall to see what sticks.  Indomethicin is used to support the diagnosis of hemicranium continum as it does not help clusters as a general rule.  O2 is very helpful for folks with classic episodic cluster headaches.  A provider reluctant to prescribe in the face of a cluster diagnosis has no clue what they are treating or how to manage cluster headaches. Oral triptans are useless to address cluster headaches.  Subq or nasal triptans can be very helpful to alleviate acute pain but you run a risk of rebound headaches.  Once you have an accurate diagnosis you can develop a treatment strategy.   
  11. Like
    kat_92 reacted to Freuds mom in Quick update   
    FYI I know many have been concerned about Freud.  He is currently in the hospital making a swift recovery. He will be back on line soon. Thank you for all the prayers and good wishes.       
    Best regards to a pain free future for all,
    Freuds mom 
  12. Like
    kat_92 reacted to Trent in Success with different breathing techniques   
    Episodic, usually a cycle in Fall, although I got an extra one last year in Spring.   Typically 4-6 weeks.   I started getting them when I was 27, not diagnosed until I was 36.   I did buy the cluster mask from Clusterheadaches.com and found it to work well.   I prefer the mouth piece to the mask.    I'm currently running a "welding O2" setup as I haven't been successful in getting Medical O2 setup, even though I got my nero to write a prescription.   
  13. Like
    kat_92 reacted to CHfather in Success with different breathing techniques   
    If your face is small, you might require a pediatric size mask.  Or it's possible that it's the other way around, and you received pediatric masks instead of adult ones.  The ClusterO2 Kit that you will be ordering can be used as a breathing tube with no mask.  Preferences about mask/tube vary. 
  14. Like
    kat_92 reacted to Brain on fire in Success with different breathing techniques   
    Mine always started at kip 9 & escalated to kip 10 in under 5 minutes. 25 lpm gave me my best abort.
  15. Like
    kat_92 reacted to mit12 in Success with different breathing techniques   
    I start out at 15ml/s and huff fast and hard for a few minutes than turn down to 8ml/s and take a deep breath and hold it until the bag fills and breath out and take another deep breath until I get relief. 
  16. Like
    kat_92 reacted to Brain on fire in Success with different breathing techniques   
    Some find the resistance/suction from the cluster specific mask helpful
  17. Like
    kat_92 reacted to Trent in Success with different breathing techniques   
    I have been successful at 6 L/min and 8 L/min by breathing out everything "crunch method" and then big inhale, hold O2 till 6 sec before bag is filled, then big exhale … repeat.    For me a big inhale 3L bag, holding it for 10sec, exhale all takes 6-8 sec and then repeat ends up being 8-9L/min.     
  18. Like
    kat_92 reacted to CHfather in Success with different breathing techniques   
    Be sure the open holes in the front of your mask are covered when you inhale.  With your thumb or with tape.  Be sure you have a firm fit to your face. Use your hand to hold it on, not the strap. You don't want any room air getting mixed with the pure O2.
    I'm going to venture that the first strategy you should try is inhale the O2 as deep as you can, hold it in for a couple of seconds, and exhale forcefully, almost to the extent that you are doing a crunch with your abdomen to get it all out.  The purpose is to clear regular air out as much as possible and get as much pure O2 as possible into contact with you lungs.  Also, remember that most people get quicker results when they get some caffeine down fast at the beginning of using the O2.  You can start with strong coffee, or you can go straight to something like 5-Hour Energy, which has more caffeine and has other stuff in it that might help.  As far as the breathing strategy you ultimately select, you can go either harder at the beginning (more forceful hyperventilation) or you can try starting out less dramatically.  Once you can tell that the O2 is taking effect, you might dial it all down a bit.  Remember to stay on the O2 for 5-10 minutes after your attack is aborted. Doing that seems to help hold off future attacks. 
  19. Like
    kat_92 got a reaction from jon019 in My first O2 tank!!   
    Hey all
    I’m so excited to update that I FINALLY got an oxygen tank! What a mission. The delivery guy is super nice and said most of his deliveries are for people with clusters. He also gave me 4 non rebreather masks for free  Hope everyone is well today 
    Kat 
  20. Like
    kat_92 got a reaction from jon019 in My first O2 tank!!   
    Hey all
    I’m so excited to update that I FINALLY got an oxygen tank! What a mission. The delivery guy is super nice and said most of his deliveries are for people with clusters. He also gave me 4 non rebreather masks for free  Hope everyone is well today 
    Kat 
  21. Like
    kat_92 reacted to Racer1_NC in My first O2 tank!!   
    Good deal!
    Those masks he gave you while better than nothing, are not the best for our use. Order the Cluster O2 kit if you haven't already. http://www.clusterheadaches.com/ccp8/
  22. Like
    kat_92 reacted to FunTimes in Question about oxygen!! South Florida area!   
    That is good that you now have a company that will supply you with oxygen.  Now it is time to start playing the game with them to get more then the one tank. I have found that the person who delivers the tank it more sympathetic and will most likely hand you a extra tank from time to time. Start out trying to collect e tanks, they are smaller amd nice to keep in the car with you. You will want more then one tank so they do not need to come to your house as often for delivers.  With only one tank you will need to plan well so you do not run out over a weekend and be stuck with no o2. As far as billing goes my local company is a flat monthly rate for up to 3 delivers so they do not charge per tank. I call and order tanks when I have a few empties and always add a extra. Most times I will use another tank before they deliver. 
    Bottom line is get to know your delivery person and figure out how to work the system to your advantage.  You do need this and they should not make it so hard. For me paying out of pocket was much cheaper then using insurance. 
  23. Like
    kat_92 reacted to Brain on fire in Life Update   
    Dana that is so good to read. I recall when you were really struggling. I couldn't be happier for you... Wait, maybe I can.... We'll see on your next update 
  24. Thanks
    kat_92 reacted to CHfather in Question about oxygen!! South Florida area!   
    kat', closer to four hours, I would think.  An M tank holds about 3500 liters.  3500/15 = ~230 minutes of O2.  But some people do find that when the tank gets lower in O2, the abort is less effective.  I've already given you my view about demand valves: nice, but not necessary and expensive, and won't save you any significant O2.
    You will probably also want a smaller tank, an E tank, for portability (car/work, etc.).
  25. Like
    kat_92 reacted to Transcona gal in Question about oxygen!! South Florida area!   
    I'll post about my regulator size and tank when I get home and can access the paperwork. 
    I am episodic. This is only my fourth cycle. My first occurred in Feb 2012 and lasted for 6 months. I think it lasted so long because I had no idea what i was dealing with. A friend suggested magic mushrooms. I really didn't think they would work but i was willing to try anything at that point. To my amazement, they worked and CH went away within the next week. I've had 2 cycles since then that i treated with mushrooms successfully. 
    This cycle is more persistent. It began Aug 2 at 3:30. The first 6 weeks were horrendous. I was prescribed a few meds but they were not helpful. I have also been taking mushrooms almost weekly since the cycle started with the exception of skipping 2 weeks. After reading here about the mushroom "schedule" I've recently switched it up a bit so i am taking them every 5 days now. I'll be dosing later tonight to stay on track. They have helped me the most. The mushrooms  have decreased the frequency, severity and length of the attacks. For me, I'm just not sure why the mushrooms are no longer working to make it go away completely. I know i'm just a few weeks in to the cycle but I am wondering if this means I'm going chronic now. And that worries me. 
    I'm taking the vit 3 regimen for 2.5 solid weeks now but I really do not notice any change from that. I've stopped all prescribed meds, I have ordered the rivera seeds and am waiting for those to arrive but have not tried them yet. 
    When Emgality becomes available in Canada I will get it as soon as i can. 
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