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Topic: Newly Diagnosed (Read 306 times) |
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SangReal
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Newly Diagnosed
« on: Nov 12th, 2004, 2:16pm » |
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Hi. My name's Mary. I'm a 20-year-old newlywed, a college student, and a part-time employee. I stay pretty busy, and my life's pretty stressful, but it was all okay until these headaches.
I've had migraines for as long as I can remember, and they've gotten progressively worse since I was about 13 or so. However, the first time I ever got a CH I knew it was totally NOT a migraine. On the bright side, I haven't had a single migraine since the CHs started.
I started getting my "mysterious" new headaches about two weeks ago, and the pain was unbearable. I mean, I literally felt like my skull wanted to crack open to let my brains ooze out. It was unbelieveably painful, worse than any migraine ever thought about being.
They started waking me up every morning, not at odd hours but when I'd normally get up. My eye would just stream with tears and my nose would run, but only on one side, at least until I started crying from the pain.
Then they'd last for about an hour and a half or two hours, go away, and come back later in the day. I felt like if I could just get to sleep I would wake up feeling fine, but there was no sleeping. In fact, the headaches got worse when I would lie down or even sit down. I felt like I needed to pace around like a crazy person instead of just sitting still. Even though I was dizzy, it made me feel like I was DOING something. I don't know...
My new husband was so alarmed at one of these attacks that he wanted to take me to the emergency room, but I talked him out of it because I was dizzy and didn't know how I'd handle a ride in the car.
The worst part about these headaches was the worry over what they were. I called my doctor but was unable to get in to see him until two weeks later. In the meantime, I worried that I had a brain tumor or something. I was really relieved when my doctor said he was almost sure that I had cluster headaches. He put me on a course of prednisone but nothing else, and drew blood for a few tests.
I just started the prednisone this morning. Although I am afraid of how much these headaches might affect me in the future, at least I know I'm not battling some strange form of cancer or something. Now that I know what I have, I can deal with it. I hope.
I am super-new to this disorder, since it only started a couple of weeks ago. Any insights or helpful hints or advice would be greatly appreciated.
<3 Mary
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| « Last Edit: Nov 12th, 2004, 2:50pm by SangReal » |
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RandyB
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Re: Newly Diagnosed
« Reply #1 on: Nov 12th, 2004, 2:40pm » |
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um that font is giving me a cluster headache 
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sevlow
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Re: Newly Diagnosed
« Reply #2 on: Nov 12th, 2004, 2:43pm » |
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Hey Mary, 
Sorry to hear that you are learning a whole new meaning of the word pain. I'm new to this game as well. Had migraines back in high school for a couple of years, but then nothing until September 26th when I got my first CH. Been lots of ups and downs since then. Had an MRI on Wednesday, and waiting now for next Tuesday when I see the Neuro to go over the results and confirm that it is just CH and nothing worse.
Thought I was coming out of a cycle (they are supposed to last 6-8 weeks I hear), since I had less and less pain over the past four days and was actually pain free all day yesterday. However, about an hour ago I got slammed again at Kip 3-4. Have the Imitrex sitting here in front of me just hoping that it will go away, but going to take the pill if it is still going when I finish this, because need to be in decent shape to make the drive to Raleigh tonight.
You might want to consider asking your doctor about Imitrex and/or O2 as abortive measures when you get hit with a bad one. I'm very much anti-drugs, but if it gets bad you gotta do what you gotta do. For me, I have found the best medicine is to do what I was doing when it hit, but just slow down some so I can focus some energy on the keeping the headaches at bay. Of course this only works until around Kip 7-8+ and then you just try not to go crazy.
Biggest advice is to do your own homework. There is lots of great advice and great people here, but always make sure to do your own research on anything you get here or elsewhere. Make sure to take the time to sit down with your husband and explain to him how these are different from Migraines. I was about ready to divorce my wife after the first couple of weeks with CH, because she kept telling me to "go lay down and take a nap," not knowing that about the worst thing you can do with CH is to lay down.
Best of luck on dealing with this. You are in the right place for people looking for support and understanding.
OK, the pain is not going away. Up to Kip 4-5 now at just over an hour. Time to Abort  Imitrex Abort.
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LeLimey
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Re: Newly Diagnosed
« Reply #3 on: Nov 12th, 2004, 3:59pm » |
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Hello Mary,
Nice to meet you! 
I'm very new to CH too, I have been having my first attack since September and it is still going strong. I, like you was extremely lucky in getting diagnosed very quickly although I did do the trip to hospital in an ambulance sent by my GP! It was quite lucky though because the docs there did know what it was and I had a CT scan.. the only daft thing was the doc who said oh yes, this is clusters also thought he could give me OTC pain killers to make it go away! A good lesson in that even when they know something they can be woefully ignorant too!
Luckily both I and my GP found this site and the OUCH site and the help from here has been invaluable.
Be aware that there are side effects with pred, I'm not trying to put you off BTW, just warning you in case you suffer them! you can get a steroid card from your doctor which will tell you more about them.
Have you tried O2? It is a wonder "drug" for me.. can't sing its praises highly enough but it does need to be at a high flow rate.
There is a great wealth of info here for you to exploit, read all you can and print what will be relevant to you, your family, friends and colleagues and of course your doctor!
There is great relief in knowing its a headache and not some scary tumour isn't there?! although at times I have wished it was something that could be cut out.
Take care and let us know how you get on
Helen
PS.. have you read "The Da Vinci Code"? Just wondering about your "name"!!
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nani
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Re: Newly Diagnosed
« Reply #4 on: Nov 12th, 2004, 7:45pm » |
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Welcome Mary and I'm sorry you're here.  Everyone is right about educating yourself. Read the info here and on the OUCH site. Go back to the dr and get on some prevents (I use verapamil, lithium and Neurontin). Oxygen is a great abortive, so is imitrex. I have never tried the prednisone taper (I don't like the steroids), but I know you shouldn't be on it long term. You may want to keep a headache diary also. Times, durations, possible triggers, etc... The more info you have, the easier (?) the fight. Hang in there, hun...we're here for you.
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eyes_afire
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Re: Newly Diagnosed
« Reply #5 on: Nov 12th, 2004, 7:53pm » |
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Hi Mary,
My advice:
Get a neurologist that knows how to treat cluster headaches. Even if you can't get in to a neurologist right away... make an appointment... and keep the appointment even if you're one of the lucky ones and your cycle happens to end. Ultimately most GP's are 'in-over-their-heads' when it comes to treating CH, and they will be reluctant to prescribe heavy-duty treatment when the chips are down and desperation sets in. Prednisone is only a temporary 'stop-gap' measure. Once you taper down off the prednisone, expect the CH to return... they almost always do. Long-term use of prednisone can cause some nasty health problems down the line. Because of that, you need to plan a med strategy right now.
Best of luck,
--- Steve
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Still around... in a brand new world now...
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unsolved1
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Hello Mary,
Glad you made it here, sorry for the reason.
Welcome to your new home on the net...grab an oar and start rowing !! 
Unsolved
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| « Last Edit: Nov 14th, 2004, 10:06pm by unsolved1 » |
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Charlie
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Re: Newly Diagnosed
« Reply #7 on: Nov 15th, 2004, 12:16am » |
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Welcome Mary:
Your description is a classic. We all felt we had a tumor or some other horror at the time. You need to see a neurologist about these. They will probably send you for a test or two but they will help you. You need to look into oxygen as well.
Here is a link to a description of these headaches that you can print out for your friends. Simon's letter is terrific.
[url]http://www.clusterheadaches.org.uk/home/index.cfm?address=../cluste rs/note_colleagues.cfm&added=04/01/04&code=CB
[/url]
You might also try sleeping in a recliner. It would sometimes lessen them by one for me. Give it a shot.
Let us know how you're getting along.
Charlie
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survivor13
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Re: Newly Diagnosed
« Reply #8 on: Nov 16th, 2004, 10:16pm » |
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please, don't be affraid to take what u learn from this site to your dr., i struggled for three years from DR. to DR. before i got results. you'll find most doctors have never dealt with cluster headaches before. alot of them don't like patients telling them what to do, but if you push hard enough they'll give in. it took be to tell my nuro. dr. (at the time) that i felt suicidal. he really got off his butt then and started giving me imitrex. GOOD LUCK!
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thebbz
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Re: Newly Diagnosed
« Reply #9 on: Nov 17th, 2004, 8:14pm » |
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Mary,
Being new to this I am sure you are somewhat scared.
Don't be. It will not kill you. The pred taper works for many. It will take a day or two for the pred to take effect. Study,study.... the afore mentioned books are good ones...another to start out with is Conquering Headache/ Rappaport 4th edition. Knowledge is power with the demon. Sorry for your pain. Stick around and learn. All the best.
BB
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Testy1
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Hi Mary
« Reply #10 on: Nov 18th, 2004, 3:39am » |
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I'm also a newbie on the board but unfortunately have way too much experience with CH. Everyone has their own little tricks for coping. My own is to get in the shower and get wet before standing in front of an AC vent and trying to freeze myself.
I take cafergot and Immigran. Since you're in the US you can get the Immitrex injectors which I think are better. Anyway, tons of meds out there, some of which don't work and others work only for a limited time.
It's tough to crush these things, the beast keeps popping up almost regardless of what you do.
Best of luck.
Jack
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