Post by GennaG on Aug 22nd, 2011 at 11:20pm
Hello Clusterheads,
My name is Genevieve but since that is exceptionally acrobatic to type even for me please call me Genna for short. I’m so new it’s not funny and believe me none of this has been funny. I’m 40 years old, a single female, and I work from home as a publication writer and editor. That’s probably the only reason I am able to cope right now at all. I live in Asheville, NC and just recently moved here from New Orleans, LA. I’m considered a disabled veteran but I don’t consider myself disabled. While in the military I was injured and as a result I experience C-PTSD and complications for a related TBI. I ended up at the emergency room night before last for the first time with one of these headaches. While I don’t think they have officially diagnosed me yet, they started saying “cluster headache” when they were talking to each other, so I goggled it the next day and HELLO that’s me. I’ve had other headaches before but they were nothing like this. I think it has been building up. They’ve been gradually increasing in frequency and intensity. But the clock-like timing was crystal clear from the start as was the unilateral pain. Don’t know if that is typical, but it’s reached a point where I can’t deal with it on my own. Up until now I have been trying to cope without getting medical attention. It seemed weak to me somehow to go to the doctor and say “See, I’ve been having these really bad headaches.” Headache doesn’t seem like a big enough word and it comes on so strong and so hard and then leaves just as suddenly after a couple of hours. That was the other reason for my reluctance to ask for help. Once it was over, it was almost like it never happened until it happened again. Most of my healthcare is colored by medical practioners’ idea that I’m not exactly mentally stable and I didn’t want to get told I was having some kind of psychosomatic problem again. In the beginning I was having one a day. They started in May and I’d just gone through a stressful relocation moving across a few states to be near family. I thought it probably was stress. I thought maybe it was elevation sickness. But that doesn’t usually last for 3 months and no one else seemed to get what was happening. I don’t pace or kick or scream but I want to. I rock back and forth like a “headcase” as my brother described it. Sometimes I pull my hair or hit my head or smash my left eye. All of that looks “pretty crazy” and I have been called crazy enough in my life to try and avoid being called that again. Being alone doesn’t help but the worried looks of family don’t either so I prefer to be alone. In May, I was only having one a day but it was every day about 2pm. My mother offered up maternal advice saying you probably just need a power nap. But sleeping isn’t possible with it unless I practically overdose on sleep aids. I took as many as four 25 mg benedryls and was starting to scare myself afraid if I did go to sleep I wouldn’t wake up. And besides, I still did not actually sleep I was just too looped to care so much that it still hurts and I stop all the rocking and agitation. I cry out of my left eye but that’s the side that hurts and sometimes it gets bloodshot. Nothing over the counter works and at some point the intensity of the headaches reached a level where I didn’t even bother with medication. Hot showers work in a limited way, but I have to get the water so hot it scalds my body for it to effect the pain. I’ve also used a heating pad on high on my head but I was told I could cook my brain if I left it on every day like that. Don’t know if that’s true but I stopped it. Perhaps I would have sought health care advice sooner but doctors make me a little nuts. I’m a veteran with access to the worst HMO in the world—the Veterans Administration for medical care. Normally, I find avoiding that place highly preferable and healthier than being seen there. If hospitals are a good place to get sick, the VA is a good place to get locked up or dead and especially when you feel like self-decapitation is an option to end your headache. Never ever tell a doctor you could hurt yourself, just kidding. Actually you have to but this was my main reason for not telling them sooner, I was worried about them locking me down because they do that. Anyway, I ended up telling them whether I wanted to or not two nights ago when I arrived by ambulance banging my head. And for once it looks like they got something right. I was shocked when they started the oxygen because I wasn’t having any trouble breathing and I was unfamiliar with procedure so I thought “Great! They think I’m having some kind of panic attack… I’m definitely going to be transferred to the psych ward.” In defense of the VA, panic disorder is on my medical chart there with severe PTSD, but I was very sure this wasn’t related and not so sure I could articulate in the shape I was in what was happening to me. But within minutes of the oxygen mask, my pain reduced to where I could communicate what was going on. They gave me a shot and within seconds I was perfectly fine. A little looped but fine. Now I’ve got to talk to a PCP about this in this week and get a preventative treatment. My general policy is one of alternative medicine over prescriptions but it’s funny how when you are in this kind of pain principles exit the equation. You just want it to stop. The last time I felt like that was when facing labor pains. Suddenly natural childbirth sounded like a bad idea just gimme the epidural NOW. I hope the doctor will be willing to supply me with an oxygen tank over prescriptions but I don’t know how firmly I’ll stick to that ethical stand point when facing the pain again. I’d rather not be on regular medication. None of that ever worked for the PTSD and frankly I don’t like my body to be a home for anything heavier than my nicotine habit. Meanwhile I am having 3 a day now-- 2pm, 9:30pm, and about 2am. Pain meds alone aren’t nearly as effective as the oxygen combo and they only sent me home with 15 of them. I’ll be out before end of the week at this rate. And I don’t want this stuff in my system. My nephews were discussing hatching dragons the other day and I thought THAT is what it feels like… like a dragon egg is hatching behind my left eye ball. There’s definitely something akin to that alien busting out of the guy’s chest in Alien going on just in a different part of my anatomy. The only productive time of the day for me is morning but I am missing most of it because it’s the only time I can sleep. Any holistic or alternative medicine ideas would be greatly appreciated. I’ve switched to sugar free chocolate substitutes, stopped drinking any alcohol at all, tried a dozen herbal remedies and I’m drinking water by the gallon. Quitting cigs ain’t gonna happen right now. It’s futile although I’m sure it couldn’t hurt. I’m just not going do it regardless of my motivation. If I’ve learned anything about myself it is that there is no good time to quit smoking and I’m lying to myself when I say I’ll do it. In fact, I’ve been smoking nearly twice as much in response to the mere idea of it. Thank you sincerely, I gotta go prepare for my next headache. It’ll be here before you know it. GG
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My name is Genevieve but since that is exceptionally acrobatic to type even for me please call me Genna for short. I’m so new it’s not funny and believe me none of this has been funny. I’m 40 years old, a single female, and I work from home as a publication writer and editor. That’s probably the only reason I am able to cope right now at all. I live in Asheville, NC and just recently moved here from New Orleans, LA. I’m considered a disabled veteran but I don’t consider myself disabled. While in the military I was injured and as a result I experience C-PTSD and complications for a related TBI. I ended up at the emergency room night before last for the first time with one of these headaches. While I don’t think they have officially diagnosed me yet, they started saying “cluster headache” when they were talking to each other, so I goggled it the next day and HELLO that’s me. I’ve had other headaches before but they were nothing like this. I think it has been building up. They’ve been gradually increasing in frequency and intensity. But the clock-like timing was crystal clear from the start as was the unilateral pain. Don’t know if that is typical, but it’s reached a point where I can’t deal with it on my own. Up until now I have been trying to cope without getting medical attention. It seemed weak to me somehow to go to the doctor and say “See, I’ve been having these really bad headaches.” Headache doesn’t seem like a big enough word and it comes on so strong and so hard and then leaves just as suddenly after a couple of hours. That was the other reason for my reluctance to ask for help. Once it was over, it was almost like it never happened until it happened again. Most of my healthcare is colored by medical practioners’ idea that I’m not exactly mentally stable and I didn’t want to get told I was having some kind of psychosomatic problem again. In the beginning I was having one a day. They started in May and I’d just gone through a stressful relocation moving across a few states to be near family. I thought it probably was stress. I thought maybe it was elevation sickness. But that doesn’t usually last for 3 months and no one else seemed to get what was happening. I don’t pace or kick or scream but I want to. I rock back and forth like a “headcase” as my brother described it. Sometimes I pull my hair or hit my head or smash my left eye. All of that looks “pretty crazy” and I have been called crazy enough in my life to try and avoid being called that again. Being alone doesn’t help but the worried looks of family don’t either so I prefer to be alone. In May, I was only having one a day but it was every day about 2pm. My mother offered up maternal advice saying you probably just need a power nap. But sleeping isn’t possible with it unless I practically overdose on sleep aids. I took as many as four 25 mg benedryls and was starting to scare myself afraid if I did go to sleep I wouldn’t wake up. And besides, I still did not actually sleep I was just too looped to care so much that it still hurts and I stop all the rocking and agitation. I cry out of my left eye but that’s the side that hurts and sometimes it gets bloodshot. Nothing over the counter works and at some point the intensity of the headaches reached a level where I didn’t even bother with medication. Hot showers work in a limited way, but I have to get the water so hot it scalds my body for it to effect the pain. I’ve also used a heating pad on high on my head but I was told I could cook my brain if I left it on every day like that. Don’t know if that’s true but I stopped it. Perhaps I would have sought health care advice sooner but doctors make me a little nuts. I’m a veteran with access to the worst HMO in the world—the Veterans Administration for medical care. Normally, I find avoiding that place highly preferable and healthier than being seen there. If hospitals are a good place to get sick, the VA is a good place to get locked up or dead and especially when you feel like self-decapitation is an option to end your headache. Never ever tell a doctor you could hurt yourself, just kidding. Actually you have to but this was my main reason for not telling them sooner, I was worried about them locking me down because they do that. Anyway, I ended up telling them whether I wanted to or not two nights ago when I arrived by ambulance banging my head. And for once it looks like they got something right. I was shocked when they started the oxygen because I wasn’t having any trouble breathing and I was unfamiliar with procedure so I thought “Great! They think I’m having some kind of panic attack… I’m definitely going to be transferred to the psych ward.” In defense of the VA, panic disorder is on my medical chart there with severe PTSD, but I was very sure this wasn’t related and not so sure I could articulate in the shape I was in what was happening to me. But within minutes of the oxygen mask, my pain reduced to where I could communicate what was going on. They gave me a shot and within seconds I was perfectly fine. A little looped but fine. Now I’ve got to talk to a PCP about this in this week and get a preventative treatment. My general policy is one of alternative medicine over prescriptions but it’s funny how when you are in this kind of pain principles exit the equation. You just want it to stop. The last time I felt like that was when facing labor pains. Suddenly natural childbirth sounded like a bad idea just gimme the epidural NOW. I hope the doctor will be willing to supply me with an oxygen tank over prescriptions but I don’t know how firmly I’ll stick to that ethical stand point when facing the pain again. I’d rather not be on regular medication. None of that ever worked for the PTSD and frankly I don’t like my body to be a home for anything heavier than my nicotine habit. Meanwhile I am having 3 a day now-- 2pm, 9:30pm, and about 2am. Pain meds alone aren’t nearly as effective as the oxygen combo and they only sent me home with 15 of them. I’ll be out before end of the week at this rate. And I don’t want this stuff in my system. My nephews were discussing hatching dragons the other day and I thought THAT is what it feels like… like a dragon egg is hatching behind my left eye ball. There’s definitely something akin to that alien busting out of the guy’s chest in Alien going on just in a different part of my anatomy. The only productive time of the day for me is morning but I am missing most of it because it’s the only time I can sleep. Any holistic or alternative medicine ideas would be greatly appreciated. I’ve switched to sugar free chocolate substitutes, stopped drinking any alcohol at all, tried a dozen herbal remedies and I’m drinking water by the gallon. Quitting cigs ain’t gonna happen right now. It’s futile although I’m sure it couldn’t hurt. I’m just not going do it regardless of my motivation. If I’ve learned anything about myself it is that there is no good time to quit smoking and I’m lying to myself when I say I’ll do it. In fact, I’ve been smoking nearly twice as much in response to the mere idea of it. Thank you sincerely, I gotta go prepare for my next headache. It’ll be here before you know it. GG
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