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Anyone else suffer from Cluster Headaches?

Discussion in 'Off Topic' started by G21G17, Jun 24, 2017.

  1. G21G17

    G21G17 Silver

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    I'm three weeks in to my latest "season". I usually get them every 2-4 years and they last anywhere from 3-8 weeks. This is my 6th season of them. Thankfully this go around hasn't been too terrible (knock on wood). Maximum pain on a scale of 10 is usually around a 3/4 and I can get rid of them within 10-15 minutes with oxygen therapy or sometimes slamming a Redbull if it's not too late in the day.

    If you've never heard of them, imagine someone taking a dull ice pick and jabbing it into your eye and wiggling it around for a while. It's always the same side of the face and for me, frequently around the same time of day. With mine, I get "shadows" that warn me of an impending one. If I treat the shadow with oxygen or the Redbull, I can frequently delay or avoid it completely. Worst season I ever had was 2015...I was getting 3-7 per day with most ranging in a 6-8 pain scale. It wasn't until I took a trip to the ER that year that I learned 12lpm of pure oxygen would end the headache within 10-15 minutes. Now I have an oxygen concentrator and refill station at home with tanks of O2 ready to go. I take a small portable tank with me to work and if I have one while working, I take 15 minutes and park in the parking garage and suck down the oxygen and go back to work.

    I'm a little nervous that I won't be out of this season by my trip to Vegas the middle of next month, but I'm not going to let this stop me from having a good time. I can't take my O2 with me, but I can buy plenty of Redbull and if I get one I can't shake, I'll just head to the room and sleep it off.

    When I tell people about these, they say things like "take a couple Advil" or "use a cold washcloth" etc...those remedys for other headaches just don't work with clusters. Oxygen (for me anyways) is 100% effective. Redbull (or other energy drinks with caffeine and taurine) is about 75% effective. Triggers for me during seasons include: alcohol (boo!!), chocolate, cured meats, certain smells (gasoline is the worst) and lack of sleep.

    Anyways, didn't mean to write a novel, but I was genuinely curious if anyone else here has ever had this diagnosed or had these same symptoms?
     
  2. Willie

    Willie AKA Slim-Willie
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    I pray and wish that you get no headaches in Vegas and that they "miraculously" just stop and go away forever, permanently..... Sometimes we gotta believe in special blessings and miracles.... Miracles do happen and I hope for your "cluster headache" miracle very, very soon..
     
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  3. Indianasoxfan

    Indianasoxfan Platinum
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    There has got to be a place in Vegas where you can get oxygen if the need arises...you might want to research it prior to your trip just in case.
     
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  4. New York Lady

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    I have seen oxygen bars
     
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  5. G21G17

    G21G17 Silver

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    If worst came to worst, I could go to a welding equipment shop and buy/rent a small tank of O2 and if asked, just say it's for some other use. It's the same as medical oxygen. I actually had to do this while waiting for my insurance to approve my O2 back in 2015. I'm taking my regulator and mask just in case.

    I've thought about the oxygen bars, but I doubt they put it out fast enough to be of use. I have to use it at around 12-15lpm to have it work. That's a pretty strong constant stream.
     
  6. G21G17

    G21G17 Silver

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    Sorry to hear that! It's weird how they pop up around the same time of year for people who have them. My last 4 seasons have all started in late May/early June.

    I've tried Imitrex in the past but it brought out pretty serious anxiety after a few doses the previous two seasons.

    Has your husband tried oxygen? It worked wonders for me. Hopefully he never experiences them again. I'm hopeful that I will age out of them and he will as well.
     
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  7. Slotness

    Slotness Silver
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    I don't get cluster headaches but I've been a migraine sufferer since I was in elementary school so I feel for you. Those that haven't experienced clusters or migraines don't get it. I hope that this round doesn't spoil your trip. At least you've found remedies that work. Headaches suck.
     
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  8. Pea

    Pea Tin
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    My dad would get cluster headaches - you could just look at him and tell by how his eye looked that he was having one. Just like your symptoms, just awful. He seemed to get them in the fall, and he noticed dark alcohol may trigger them. He had a whole file on it where he tracked everything.

    They think they may have something to do with the circadian rhythm which is why people tend to get them in the fall or spring. Some suggest melatoin, but it's like a hormone and if you take it too long, your body stops making it's own. Interesting about Red Bull helping.

    Also about getting anxiety from the Imitrex - there is a correlation with serotonin which the Imitrex is supposed to help, but there are many different serotonin receptors so that one may hit an already working receptor for you. If you want to experiment - try some l-tryptophan or 5-HTP for serotonin. Or eat more tryptophan foods - chicken, pumpkin seeds, and see if that helps.

    I sure hope your trip goes OK! At least you discovered some things that help.
     
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  9. LVHooked

    LVHooked Bronze
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    Vantage handles oxygen around here, they provide travel size generators as part of the program. (No extra charge) The small ones purse size may not work for you, but the wheeled travel size should. Check with your company and see what they offer.
     
  10. G21G17

    G21G17 Silver

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    Thanks! I feel pretty confident that I can control them without the oxygen and I still have a few weeks for them to go away before the trip is here.

    I'm sorry that your dad had to deal with them. Smart on his part to keep a journal. I keep a headache log of times and duration and what if any treatment I used. I came across triggers last time and have avoided them this go around and it's been a lot better.
     
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