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Topic: I just found this site. (Read 1126 times) |
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Kitty1973
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I just found this site.
« on: Mar 22nd, 2008, 10:08pm » |
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I am a 34 year old mother of 2 teenagers and wife. I have been having cluster headaches for about 6 months now. I have been diagnosed with the chronic type. They are awful. I was given Epidrin by my Dr. for the pain, and they work sometimes. Last night I had the worst headache I have ever had. It lasted 5 hours. After the first two hours, a trip to the Emergency room, and two of my Epidrin's and 4 Motrin, I screamed, kicked stuff, and cried. My husband told me that screaming wouldn't help anything, and although he is probably right, I didn't stop. I couldn't. The Emergency Room Dr. wouldn't do anything, just said to take 2 more Motrin, and lie down. HAHAHA like that will help. They also told me they wouldn't give me any narcotics for the pain. I told them fine, and asked them if they would try oxygen. I have heard that that would help. They looked at me like I was crazy. Needless to say they refused. My husband drove me home. We live about 20 minutes from the hospital, and both the ride there and back killed me. I finally threatened to jump out of the moving car if he didn't pull over. I had to get out of there. He finally pulled over, and I walked the last quarter mile home with him following me in the car. It helps sometimes to walk fast. I think the cold air helped too. I got some temporary relief from this, but not for long. I just had to let it run it's course. It finally did stop, just as quickly as it started.
I think that if we had owned a gun last night I would've used it. Between my husband trying to help me(meaning well I know, but I just wanted to be alone), and the ER Dr.'s telling me I was just a drug addict looking for a fix, and the horrible pain in my head, I was desperate.
I have lost my job. I have only called off twice, but the last time I did, which was today, my boss told me that they were already short-handed, and he was going to find a replacement for me as soon as he can. That tells me I have the rest of the week to work, and then I am out of a job.
I just don't know what to do anymore. I feel so lost. I am alienating myself from my kids and husband, I don't want to go out in public, I just want to stay home where I can pace, scream, bang my head, and rock back and forth to try to relieve the pain in solitude, without the prying eyes of people who think I have really lost it.
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Linda_Howell
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Re: I just found this site.
« Reply #1 on: Mar 22nd, 2008, 10:28pm » |
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Oh Kitty, I feel so badly that you had to have that ER experience. We've all been there though if that is any consolation whatsoever. Going to an ER is about the last place most of us will resort to. By the time you get there...the hit is over. And even if it's not, it is expensive and we've all heard the "you're just drug seeking' line.
6 months does not mean you've gone chronic so take heart with that.
Can you tell us some history?
What exactly have you tried? What has worked or not worked?
We'll all try to help answer any questions we can here.
Linda
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Hal
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Re: I just found this site.
« Reply #2 on: Mar 22nd, 2008, 10:38pm » |
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Hold on. It will get better. It has to, right? Between headaches read here. A lot of good information and help.
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Rosybabe
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Re: I just found this site.
« Reply #3 on: Mar 22nd, 2008, 10:56pm » |
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HI Kitty!
First of all welcome home, because clusterville is now your home too.
I am so sorry you have to go through that experience at the hospital...
motrin won't help honey, try some Red Bull at the first sight of pain and melatonin 9-12 mg at day, that will help with the night hits.
Ice packs to the area work for me...
we all feel your pain, you are not alone and we understand.
You can talk to us and we will try to help you. There are a lot of folks here with lots of knowledge.
Please stay with us and remember, the lights are always on here for you...
sending you lots and lots of pain free vibes....
hugs
Rosy.
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CostaRicaKris
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Re: I just found this site.
« Reply #4 on: Mar 23rd, 2008, 12:01am » |
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Kitty,
I hope you can take comfort in the fact that you are not alone. Over the course of four years, I had countless trips to many Dr.s and Urgent Care were I was accused of drug seeking and treated like I was nuts. Almost everyone here has had similar experiences.
What about O2?
Kris
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DragonSlayer
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That pain is only 1/2 as bad as you think it is!!!
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Re: I just found this site.
« Reply #5 on: Mar 23rd, 2008, 12:26am » |
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Hey Kitty,
So sorry you came looking. Damn glad you found us.
Welcome to the Clusterville Nuthouse.
ER sucks!!! Many horror stories about those places.
As mentioned above try a Red Bull (or any energy drink with Taurine & Caffeine) at the first sign of a headache coming on. Strong black coffee will also work, ice packs or package of frozen veggies, walk in the cold (like you did already).
There is alot of very good information here - read all you can and ask questions. This place has alot of experience with this monster and we are very eager to help you!!!
Welcome, glad you found us!!!
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Kitty1973
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Re: I just found this site.
« Reply #6 on: Mar 23rd, 2008, 12:29am » |
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I know that Motrin won't help. I was diagnosed with chronic cluster headaches by my dr. I don't know if she was right about them being chronic or not, but I know that I haven't had but maybe 1 or 2 headache free days in the 6months since they started.
I tried OTC medications when they first started, which did no good. I made an appointment with my doctor because I thought there had to be something causing them, like a tumor or something. She did a CT scan, which came out normal.
She prescribed Epidrin for me, which helps to ease the pain sometimes if I take it in the first minute or two before it really gets going.
I have tried pacing which seems to help, cold packs help, and rocking back and forth helps sometimes.
I have also tried stupid things, like smacking myself in the head with something, smacking my head into the wall, screaming, etc..
Sometimes my family looks at me like I am nuts, especially when I start hitting myself, although I try to only do this when I am alone.
As far as the O2 goes I am trying to get my Dr. to try that, but so far she hasn't.
I am so happy that I actually cried when I read your posts to me. I finally feel like someone cares.
Thanks for being here!!
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Batch
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Re: I just found this site.
« Reply #7 on: Mar 23rd, 2008, 12:57am » |
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Kitty,
Check your PM. It's at the top of the screen on the right side of the Message Board banner "Hey, Kitty1973. you have Messages, 1 is new.
Take care,
V/R, Batch
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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, not any before nor after, that’s as lovely as a great airplane. Man has one virginity to lose in fighters, and if it is a lovely airplane he loses it to, there is where his heart will forever be.
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CostaRicaKris
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Re: I just found this site.
« Reply #8 on: Mar 23rd, 2008, 1:00am » |
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on Mar 23rd, 2008, 12:29am, Kitty1973 wrote:| As far as the O2 goes I am trying to get my Dr. to try that, but so far she hasn't. |
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Print everything you can find about O2 and CH - start with the stuff on this site and bring it with you to the next appointment. There's a lot of information out there, even Drs can't be expected to know it all. Sometimes we have to help them.
on Mar 23rd, 2008, 12:29am, Kitty1973 wrote:
I am so happy that I actually cried when I read your posts to me. I finally feel like someone cares.
Thanks for being here!! |
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I felt the same way when I found this place. Don't worry. There is always someone here that cares 
Kris
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| « Last Edit: Mar 23rd, 2008, 1:00am by CostaRicaKris » |
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Batch
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Re: I just found this site.
« Reply #9 on: Mar 23rd, 2008, 2:23am » |
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Kitty,
We're all so sorry the cluster headache beast has you between a rock and a hard place at a time like this on a holiday weekend so let us see if we can help you. We know what you're going through.
You need to get to a Neurologist that understands how to treat acute cluster headache attacks, but that will likely need to wait until Monday unless you want to try another ER or give the folks below a call later this morning. The following link lists some neurologists that other cluster headache sufferers have seen in the Denver area with satisfactory treatment results.
http://www.helpforheadaches.com/doctors/migraine-headache-specialists-co lorado.htm
I've checked, both of the neurologists listed are in the Denver area over 200 miles/3 + hours away from where you live at the following:
Colorado Neurological Institute Head Pain Center
799 East Hampden Avenue, Suite 110
Englewood CO 80110
Telephone: 303-781-5505
Again, call them later today and follow up with another call on Monday. They may be able to refer you to a neurologist closer to home that knows how to treat cluster headaches.
http://www.helpforheadaches.com/doctors/migraine-headache-specialists-co lorado.htm
There are a few homeopathic things you can do now that may help get you through the night:
1. You've already found that cold helps. Get a bag of frozen vegiges or better yet a single ice cube and wrap it in a doubled paper towel. Wet one side and place it on top of your head on the hit side just off center on a line above your ear as soon as you feel the next attack about to happen.
2. You're in Colorado so put your coat on and step outside find a chair, sit down and hyperventilate until you start feeling dizzy and your fingers tingle. Keep it up as long as you can. It will help if you do both the ice cube/frozen bag of veggies and hyperventilate at the same time. The ice cube and hyperventilation on cold air work as vasoconstrictors as will the extra oxygen from hyperventilating.
3. Some good folks have already suggested Red Bull. Have your husband run out to the nearest all night convenient store for a 6-pack of Red Bull and chug an entire can as soon as you feel an attack coming. If an attack has already started, chug a can anyway.
The caffeine and taurine in Red Bull will help. Caffeine is a vasoconstrictor and Taurine has some neurogenic properties that may help. Both will be a lot better than any OTC pain meds. If you can't get any Red Bull, make a glass of strong iced coffee and drink that.
4. As you've already found the local ER to be worthless, if you feel you can't take the pain any longer, pick up at least two gallons of ice cream and take it to the local fire station. Fire fighters love ice cream and they usually have an EMT on duty with oxygen. Tell the EMT you're having a cluster headache attack and need oxygen from an EMS demand valve or "Bag" respirator at a high flow rate. We all need 100% oxygen at a minimum of 15 liters/minute.
I've sent you a PM with more info and my phone number so please don't be bashful. I'll be up for another 3 to 4 hours.
In the mean time if we've got any CH'ers in the greater Denver or CO Springs area that have a spare oxygen cylinder mask and regulator, post a link.
Take care and hang in there...
V/R, Batch
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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, not any before nor after, that’s as lovely as a great airplane. Man has one virginity to lose in fighters, and if it is a lovely airplane he loses it to, there is where his heart will forever be.
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Kitty1973
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Re: I just found this site.
« Reply #10 on: Mar 23rd, 2008, 10:49am » |
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Thanks Batch and everyone else!!
I will call a Dr. who specializes in the treatment of clusters on Monday morning to make an appointment.
I had another attack this morning, but thankfully I got my prescription Epidrin in my system in time, and it worked this time!! I didn't have to suffer.
I have been having between 4 and 6 attacks every day, and most of them I can bear with the help of Epidrin, cold packs, and pacing outside in the cold Colorado air. I dread sleeping sometimes, for fear that when I wake up I will not be able to do anything to relieve the pain because it will be too late to expect the Epridrin to work.
I am learning to deal with them, and knowing that I am not crazy, and that there are others who understand what is happening to me helps alot!!
Take care everyone, and Happy Easter
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Hal
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Re: I just found this site.
« Reply #11 on: Mar 23rd, 2008, 11:37am » |
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Kitty,
I cried too when I found this site. It was such a HUGE relief to know what I had (I didn't know until I came here), and that there were actually people who suffered from what I did. Though some, like you, suffer more.
My first episode was my longest and worst. 5 months or so of sheer hell. That was 10 or 12 years ago and mis-diagnosed as sinus related headaches. The headaches were just part of the hell. The sleep deprivation and the toll that takes, is almost as bad. Well, nothing's AS BAD So maybe you will follow the same pattern with the first episode being the longest. I am one of the lucky ones that have long periods of remissions. Some hope there. My previous episode before the current one was three years ago.
If you suffer from persistent HA's after falling asleep, like many of us do, you should try Melatonin. It has been a real gem for me. Experiment with the dosage. 12mg was too much for me. I could barely get up in the AM. It's cheap, over the counter stuff. You might get differing opinions on this, but its worth trying. A live saver for me.
The red bull and the cold packs have also made a difference for me.
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Kevin_M
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Re: I just found this site.
« Reply #12 on: Mar 23rd, 2008, 12:09pm » |
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on Mar 23rd, 2008, 10:49am, Kitty1973 wrote:Thanks Batch and everyone else!!
I will call a Dr. who specializes in the treatment of clusters on Monday morning to make an appointment. |
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That sounds like a real good first step. So far it seems a diagnosis has been unrecognized and treatment inadequate.
Quote:| I am learning to deal with them, and knowing that I am not crazy, and that there are others who understand what is happening to me helps alot!! |
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This is the hope intended from creation of this site. From your story, lending support and guidance is drawn from the knowing of walking in your shoes.
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RichardN
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Re: I just found this site.
« Reply #13 on: Mar 23rd, 2008, 1:32pm » |
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Welcome Home Kitty
I am a "head trauma" CHer . . . I nailed my noggin 1/01 . . . the headaches started . . . CTs, MRI, multiple tests, non-working meds . . . they just got worse and more frequent. By the time my wife found this site for me (2/02), I was having 6-8 attacks per day, sometimes 3-5 at night, Kip 5-9s mostly, 20-45 min and the occasional 1 1/2 - 2 hr + horror. I was a basket case . . . afraid of sleep . . . afraid of the next one . . . how soon?, how bad?, how long will it last? We all know that fear . . . you are not alone . . . you are not crazy.
This place gave me a name-for-the-pain and the info/ammo to battle our common beast. A few days after scouring this site, gathering/copying info (and yes, crying with the emotional overload of finding others who truly understand) . . . I had what still ranks as the worst attack I've ever had . . . in the woods, by myself 2-3 hr Kip 10.
The following day, I took the copied info to my doc . . . detailing my EXACT symptoms and DEMANDED Verapamil, 02 and Imitrex. I was admittedly loud and hostile . . . and NO I didn't want to just increase the Atenelol which I had been taking. He relented on the Verapamil and the 02 (though I didn't get the right regulator/mask), but (correctly) refused the Imitrex script before taking stress test, heart cath. I have some artery blockage and high cholesterol . . . so cannot take Imitrex.
I had my first PF day in over a year about 3 weeks after coming here (had three attacks that night I killed with the 02 . . . most in under 15 min) . . . it was a GLORIOUS day. Finally having some control over the beast is a feeling you will be experiencing soon . . . we'll get you there. One of my favorite motto's on this board is, "Nothing works or everyone, but SOMETHING works for everyone" . . . and here you have a very good chance of finding the "something" that works for you.
Please don't discount water therapy (see "water X 3"... link on left). I am convinced this has helped me greatly reduce the frequency/intensity of attacks. You need to make sure and take a multi-vitamin and start using sea-salt to replace necessary minerals which can be flushed away with the additional water intake.
You MUST get 02 as soon as possible. Works for 70% of us to abort an attack. If used early-on, you can kill him at a Kip 3-4 and avoid the "dance" . . . they ramp-up so fast . .. MINUTES MATTER!
02 IS a recognized abortive for CH. Do not let your doc deny a prescription because, "your insurance doesn't cover it" . . . and you'd be surprised at how often that happens. 02 is cheap . . . . I pay $10 per "E" tank (the green topped portable tanks, about 3' tall, 4" in diameter) . . . and keep twelve. I ordered my second 15 lpm regulator off ebay (about $40) so I have one set-up at home and one in my van.
Enough for now. Keep reading, keep asking. The answers/info/caring/sharing you will get here comes from folks who truly know your pain.
Be Safe, PFDANs
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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Robaird
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Re: I just found this site.
« Reply #14 on: Mar 24th, 2008, 12:44pm » |
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Hello Kitty,
I was touched very deeply by your experience. And I wanted to address your concerns about your employer and your job. Insensitivity and commercial necessity sometimes make our bosses seem adversarial; unable or unwilling to comprehend our suffering. From what you wrote, I would hazard a guess that all is not lost, so I'm going to be as positive as allowable under the circumstances and refer you to a thread in this section called "Letter to colleagues and employers" posted by E-Double.
Assuming all is not yet lost, perhaps you ought to consider printing out a few copies of the letter and passing one along to your boss or immediate superior.
I lecture at a university in China, and I had the letter translated by my wife into Mandarin, which I passed out among various administrators and colleagues at the institution.
Although I was on leave during my cycle (I'm episodic, 22 years, 24 month remissions/8 week in-cycle), I was pleasantly surprised by the attitudes exhibited upon my return, by those who received the letter, to "our" condition.
It's very difficult for any rational person, when faced with the cold facts regarding another human being's pain, to remain indifferent.
It's only a suggestion, and it may not be the panacea to your occupational woes, but it's an avenue you could explore.
I wish you PFDAN's and the courage to continue your struggle. There are good people here in your corner!
Warmest regards,
Rob
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Writhing on floors is "wasteful" during a nightime hit, according to my wife; she'd rather see all that expended energy put to better use, bless her! If she only knew...
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Kitty1973
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Re: I just found this site.
« Reply #15 on: Mar 28th, 2008, 2:34am » |
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Thanks.
The letter helped alot. I printed it and gave a copy to my employer who agreed to let me keep my job. We also worked out a plan for when I can not be there.
I work as a dishwasher in a resteraunt. I have a 15yr old daughter who voluteered to cover for me at work anytime I couldn't do it. The boss agreed to let her take one of the busier nights and let her try. She did awesome!!
Now I feel better because I know that my job is secure. My daughter told me that she loves the fact that she can make some extra money, and also that it is something she can do to help me.
Talk about a great supporter for me. I hope she knows what a weight this has taken off of me, and how proud I am to be her mother.
Kitty
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Superdave
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Re: I just found this site.
« Reply #16 on: Mar 28th, 2008, 3:17pm » |
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Hi Kitty,
I'm chronic as well, and have had these blasted HAs for 5 1/2 years, the same story as you and so many others of us. No one really seems to understand what your going through until you get here. My heart goes out to you.
Welcome!
I am now taking 6mg sansert, 9mg melatonin, I have had very few attacks and have been able to abort them all with redbull or o2 for the last 2 mos., I have a good neuro and an even better support group @ clusterheadaches.com. I feel like a new man, and soon you will be feeling better too.
A great place to be in a bad time
Superdave
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Wow! you mean it's just in my head?
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Callico
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Re: I just found this site.
« Reply #17 on: Mar 28th, 2008, 4:10pm » |
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Hi Kitty,
Glad you found us.
As someone said, I would not say you are chronic yet. Usually chronic refers to having had constant attacks without a two week break for over a year. You aren't there yet.
I have suffered with these things for almost 30 yrs, with the last 4+ chronic. Personally I like being chronic better, as I have pretty much fallen into a schedule of attacks, (if you keep a HA log you will determine what yours is, although the beast throws a few in just for fun periodically), so I am prepared in advance for the attacks.
It is great that you have a daughter who is willing to help out and support. If you will be up front with your family I don' think you will alienate them. I understand how much of a disruption it is to them, but that is something you will be able to work out over time.
I'm glad the ER would not give you any narcotics! Narcs will do nothing for CH, and will make you dependent VERY quickly and ruin your life.
You have found the most potent medicine for dealing with CH that there is, and that is here on this board. These people saved my life.
Jerry
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"When He acts on the left, I cannot behold Him; He turns on the right I cannot see Him. But He knows the way that I take; when He has tried me I shall come forth as gold." Job23:9,10
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Kitty1973
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Re: I just found this site.
« Reply #18 on: Mar 28th, 2008, 6:31pm » |
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[td] I'm glad the ER would not give you any narcotics! Narcs will do nothing for CH, and will make you dependent VERY quickly and ruin your life. [/td]
I wasn't wanting any narcotics anyway, I wanted O2. I tried to get this through to the ER Dr., but they were too thick headed. I even said flat out to them "I don't want narcotics, just give me Oxygen."
Kitty
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Superdave
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Re: I just found this site.
« Reply #19 on: Mar 28th, 2008, 7:11pm » |
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Thick Headed is an understatement 
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Wow! you mean it's just in my head?
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Kitty1973
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Re: I just found this site.
« Reply #20 on: Mar 30th, 2008, 8:16pm » |
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I live in a small town in Southeastern Colorado, and the doctors around here know nothing about CH. They also don't seem to want to learn anything either. That is why I made an appointment 3 hours away with a nuero that specializes in CH.
I have O2 at home now though, so I won't have to deal with the ER dr.'s againg over it.
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