Boatman
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Posts posted by Boatman
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Don't recall any bad ear infections while growing up but I'm also a lefty with ch on the left.. I do suffer from frequent sinus problems
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Hey 81007
So I used the sumatriptan pills one cycle kinda like youre describing but like you said they only cover so many on insurance. The pills are cheap though I used to get a box of the 100mg for under 20$ out of pocket after my insurance wouldn't cover them. As long as you have a script call around for out of pocket prices.. I used to use the 50mg and get 4 to 6 hr breaks from headaches and the 100mg would last about 8 to 10 so I would take them at night to sleep. The only reason I stopped that way because when they wore off I would get my attacks and it seemed pointless after a while. 02 and energy drinks work for me now. Rather quickly too.
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CH father I think you're right.. I try to avoid my children and wife from seeing me in pain. I fight almost all my ch in the garage. I don't want my children to worry about me. They aren't little anymore but they along with others don't have the understanding of the amount of physical pain, therefore I think it's pointless to be around them during an attack. I have my diagnosis I do the best I can to accept it. I don't look for simpathy or to make it worse on anyone in my house. Its really not thier problem anyway so why put the burden on them. Help to me is calling the drs for me to make and appt or just a hug. Giving me space to fight it. Talking to others who have ch is where you're understanding will come from. My suggestion is to ask the person with ch what they expect from you or what they need. Ive been pain free for 5 months and this is my first post. You were saying something about some of us staying away from the site while pf and I'm one of them. Mostly because it consumes enough of my life so I owe it to myself and others to live the most I can in-between cycles. Its not any easy thing to swallow know that ch might chase me my whole life. I take my hat off to the rest who stay and help the new comers. I have deep respect for those of you. I hope I don't sound harsh.
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Hang in their Freud..I'm praying for you n that they let up.. if you need anything let me know
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My shadow feels like a super light ch, something you can still function and work will although very annoying pain.. caffeine won't work and neither will oxygen.. I hate to say it but sometimes I wish it would just go into a cluster for 15 to 20 mins so I can fight it with 02 and move on with my day.. by dinner time Im hurting pretty good.. I try ginger but it don't work for me.. sometimes I'll try a couple moltrin
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J.C you are right a cga540 threads on 02 tanks fit both medical reg and torch regs.. it's the cga870 post reg that won't work with the larger tanks.. I personally have two torch regs witch I love and work really well. One I keep in my truck and one at home.. I have full adjustment to as mush 02 as I need.
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I move into a chronic “mildCH” mode.
Not sure what this means into light can you explain it to me? Have you checked on LETGO app or Craigslist they usually have 02regs on thier sites for sale.. I'm sure with all the retirement people in FL there's alot for sale.. I look at the sites daily for 02 stuff some really cheap too..
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Teacher
I have the same problem, my neck hurts so bad while in cycle it makes me believe thiers something wrong with it. It hurts to the point sometimes it's as bad as my clusters. Freud is right.. focus on painfree days.. take it one day at a time.. sadly our loved ones can only understand so much.. The clusters have consumed me too where I can't stop wondering when the next is coming and what,when,where,how and why.. Day by Day my friend and good supportive people.
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There is also FMLA that some company's are required to honor. This allows you to use up all you're vacation and sick time then go unpaid if needed while still keeping you're job.. It's an option until you can get you're clusters under control
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Mr S.
Not sure if you live near a major city or not but most have a headache center at University hospitals, when my wife tried to get me in at one they told her I would have to wait a couple months for an appointment and she told them "you don't understand he doesn't have a couple months he has cluster headaches" once they heard that they imeadiatly told my wife they would get me in and cluster headache patients get VIP appointments. It's worth trying to find one because May is not reasonable for a cluster headache person. Most regular neurologist don't specialize in cluster headaches and can be frustrating to deal with because of thier lack of knowledge on the condition.. I drive an HR to see a good nuero..
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I hope so.. it's been a couple days since I've had a low low level ch. I haven't had a full blown attack in 3 weeks.. As far as work goes, I have very supportive co-workers who have seen what ch looks like first hand and this includes my bosses. They allow me to take time go to my car and use my oxygen to abort. I have only used maybe 5 injections in four months of cycle. The oxygen and caffeine drinks without sugar are my best tactics. I try to avoid injections at all cost unless I'm ready for the ER.. I missed 3 straight weeks at the peak of my cycle.. fortunately I'm allowed to save my sick time every year so I do, just for my cycls.
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I swear when I'm sleeping at night and the furnace kicks on for too long I wake up with a ch.. Its like the forced air makes it hard to breathe or it changes the pressure in the bedroom
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X boss I couldn't agree more. I hate purfume!!. Candles and car freshners!! The couch sitting positions too.
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Ch father said it as I was typing
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If you can abort with oxygen,keep aborting with oxygen. It's much safer then big pharma drugs.. if you think it causes rebounds try one day to see if it makes a difference. Personally I use oxygen and never believed they rebounded me. You're cycle might be ramping up before it stops. It's good to give it a little more time on 02 to make sure your ch is gone. Sometimes I'm to tiered and it let's up enough to sleep only to return. That's just my opinion
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That's the million dollar question.. that and why are some people cronic and some episodic. I ponder the same question countless times.. I know there's others smarter then me so what makes me think I can figure it out.. it's best probably not to wonder. Someone told me it's best to focus on treating them and preventing them with D3 reg and or busting. It's our best chance at a normal life..
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It's best to try and abort you're attacks first with oxygen. I know it's difficult but saving the sumatriptan for the worst attacks at night or the times you're away from oxygen will help conserve. Most of us get scripts out of cycle to stock up..Depending on what injections you take sometimes you can modify the 6mg to give you three 2mg injections. Theirs a guy on utube who shows you how.
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Fun times is right there's a lot out there besides big pharma meds.. they can be a double edge sword.. most of us have tried them all. You'll find some help for a while and stop working. Some don't help at all but people are too desperate or afraid to stop taking them..I learned the hard way about lithium, verapimil and topamax. And that's not the list of ergots and triptans..I would make sure that you don't have any kind of infections ear,nose or phnomia, bronchitis.they can wear down you're immune system and keep clusters going in my opinion. It all adds to inflammation in the body. Theres people here say their clusters start after getting sick. It's not the reason for clusters but it can make it harder to stop a cycle.
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I have that app.. thanks for the info. I've never had a hard time falling asleep. If I do it's usually when I dream and that's only about once a year.. my kids and wife say they dream every night but not me. They find it hard to believe that. I always get my attacks and hr into sleep. I've heard melitonin helps with attacks but not sure if I should try it because I always have no trouble falling asleep. That and I was afraid to be groggy fighting the beast. Never took zany's for that reason too. I was thinking most of us might not dream much unless they used a sleeping aid. Might have some common similarities to clusters.
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I wanted to ask if anyone with clusters has dreams in or out of cycle.. I do not dream ever. Maybe once or twice in a year. I spoke to another cluster headaches who says he doesn't dream either. Wondering if there is any link between not dreaming and clusters???
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Thanks guys.. it's been two days since I've had to drink an energy drink.. I still have the spike energy in my fridge. I've been in cycle for four months now. Once I get to four days I believe it's over. I've had a couple pf days in my cycle B4.
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I just bought two 16oz cans of spike energy drinks because they have 350mg of caffeen and they were 2 for three dollars at the 7-11 store. Anyone try these yet? I usually stock up on monster low carb but these look more potent.. I might only need a few sips if it's twice as strong..hoping do get my abort time below 15 mins I'm averaging about 30 till I can return to bed.. also besides red bull and 5 he shots and coffee do others have a certain brand the know helps?
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First monster then 02..
If shit hits the fan from there I start my pace from upstairs to downstairs on more 02 breathing and spraying the cold O2 on my eye and head.then outside and Have a smoke and tell it to F-off. Then I'm back inside pacing some more maybe cold pack then again to a hot rag..then a shower till all the hot waters gone sitting there shivering in cold water.. then more monster. Low carb that is. Then I tell the beast come get me give me all you got I'm right here and Im not scared.. tears usually by this point. I smile thinking it's all in my head.. Breaking down to almost nothing and mustering up all my strength to hold on to my sanity.. reminding myself it will eventually stop..
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The insurance wouldn't cover mine they sent me a denied form.. so I called Gama core to send it back they said throw it out. I was shocked to hear that.. not wanting to give up I took it back to my nuro to see if I used it wrong or wasn't doing something right.. went back home gave it another worl for a while till it stop working. I was out of free "zaps" from it.
Has your husband an daughter tried the D3 regimen. Batch is very helpful here. I been down every big pharma script road taking and trying everything. Im done with them all.. some helped some made things worse and most that did help left unpleasant side affects.. It breaks my heart to her a daughter with these let alone an adult.. I hope you find releif for them.
Insurance won’t approve my oxygen tank...sigh feeling helpless
in General Board
Posted
Hang in there Kat.. I'm sorry to hear that about your 02. I myself use welding 02 for similar reasons. Any chance you live in a populated area? It helps because on Craigslist and letgo people sell 02 tanks all the time. You might want to take a look.. some tanks are not too heavy.. the other thing you could try is just taking a ride to the welding/gas supplier near you because it's not uncommon for ch people to be use these places.. the supplier near me is very familiar with the condition. They might be more then willing to set you up with something. Refilling tanks is not expensive.. good luck. If you need any help don't be scared to ask..