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mlmasd00

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Where do I go from here?
Nov 13^th, 2009 at 1:49pm

So, I have never in my life experienced the pain I began feeling a little over a week ago. It was about 10pm one evening when it first came on and to start with I just knew I was dying from a brain aneurysm. But instead of killing me the pain got worse and worse until I was hysterical, screaming and pacing the floor of my home holding the right side of my face. My husband frantically searched for the car keys to take me to the ER but I couldn’t stop crying and pacing long enough to get into the car. And then, just as quickly as the headache came it was gone (about an hour after it began). I felt exhausted. In the past two weeks since having the first attack I have been having the headaches pretty frequently, always after 9pm and sometime multiple times during the night. They seem to get a little worse with each one. However, every one is excruciating. I saw an MD and he had absolutely no idea what the problem was but highly recommended I see a neurologist for a CT scan. I did some googling online and ended up here. But, I’m not sure where to go with all of this info. Is there a certain type of Doctor I need to see for these types of headaches. Where do I go? What do I do? Cry

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Redd

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Re: Where do I go from here?
Reply #1 - Nov 13^th, 2009 at 1:56pm

You want a headache specialis neurologist. You want an MRI/CAT scan to rule out anything that could be an organic factor such as an anurism or tumor.

Keep a diary of when you get an attack, what time, and how long it lasts.

There is a quiz over on the left side bar. Please take that and let us know the resuslts.

We aren't Doctors here and can't help DX you, but together, there are thousands of years of expert patient knowlege to help you once you get a firm diagnosis.

Welcome.....and know we will help in any and all ways we possibly can.

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"The goal of life living in agreement with Nature." ~Zeno

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Jeannie

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Re: Where do I go from here?
Reply #2 - Nov 13^th, 2009 at 2:00pm

Hi.

Sorry for your pain. The best place to start would be a neurologist or headache specialist.

Until you can get in, buy some energy drinks such as Red Bull. I use Red Thunder from Aldi. It's cheaper and they all taste bad to me anyway. If it is CH, some people find that drinking it as fast as you can, at the FIRST hint of an attack will lessen it's severity and duration. I also use ice to help with the pain.

Be sure to see a specialist though. Good luck to you!

PF wishes,

Jeannie

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RichardN

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Re: Where do I go from here?
Reply #3 - Nov 13^th, 2009 at 2:51pm

Hello and Welcome

Do take the quiz and read the "cluster traits" link and "the kip scale" and tell us how much that sounds like you.

By all means keep a journal noting the time, duration, intensity (use the Kip scale for that and take a copy of same with you when you next see a doc)

Identify triggers if you can. For most of us, alcohol is a major trigger (is for me), and for those sufferers who are episodic, that's how they'll verify if the cycle is over . ."the beer test". I'm chronic and a beer or shot of brandy will trigger an attack for me within 10 min. . . . also exhaust fumes, certain chemicals like carb cleaner or other solvents . . . some are triggered by perfumes.

CH won't kill you . . . even though it feels like it will , but you do need to get ruled out other potentially dangerous causes. CTs and MRIs will come back "normal" if it's CH . . . and there are working abortives and preventatives out there that can/will help manage your pain.

Keep reading . . . keep asking . . . you aren't alone with this.

Be Safe, PDANs

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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mlmasd00

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Re: Where do I go from here?
Reply #4 - Nov 13^th, 2009 at 5:15pm

Thanks so much for all of your advice and support. I took the CH test and none of the "non-CH characteristics" fit. Out of the "CH characteristics" all but the "Droopy eyelid" fit. While my right eye does tear up and water and gets really blood-shot there hasn't been any drooping to it. It does however feel really strange, like it's swelling or something while the attack is going on. Hard to describe I guess. Anyway, as far as the pain scale goes, at the height of the attacks some of them have been a definite 10. I haven't wanted to take my own life but I have found myself screaming "DEAR GOD JUST KILL ME ALREADY!!!!!" And I have multiple "WHY ME?!?!" episodes as well. I would describe the pain as feeling like someone is taking burning hot nails and driving them into the right side of my face, around my eye. It’s an extreme burning + stabbing feeling rolled into one. I have been a migraine suffer for years and they don’t even compare to this. The weirdest thing about the attacks is they happen at the same time of day, after 9pm. I can’t seem to find any triggers for them other than that. I got one while taking a shower, another while microwaving dog food, another while watching TV, and some I’ve gotten in the dead of sleep, when I’m jolted awake by the pain. Keep in mind all of this has been going on in the past week and a half. The Dr. gave me vicodin for the pain until my appt with the neurologist but even that doesn’t seem to help much. It could be that the pain goes away before the meds have time to take effect I guess. Undecided

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Martin

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Re: Where do I go from here?
Reply #5 - Nov 13^th, 2009 at 5:20pm

Yup, sounds like clusters to me. Get an MD to give you the Dx, that way you can get serious treatment options.

Diagnosis:
Keep a dairy of the headaches.
See a headache specialist neurologist, or plain neuro at the very least.
Get an MRI to rule out tumour, aneurism.

Temporary Pain Relief for Clusters:
CHUG Caffeine/Taurine mixes (red bull, monster, etc.)
Hot shower (or COLD, people are split)
Hot compress on the neck, temple (or ice pack, frozen veggies if you like cold)
Jumping jacks, running, weightlifting, etc.

N.B: Everyone is different with these types of headaches. I need cold, and the redbull works 50% for me.
Also, painkillers are useless and will not help the pain. Ibuprofen, acetometaphin, even opiates like codeine and morphine cannot releive the pain, sadly.

GOOD LUCK.

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mlmasd00

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Re: Where do I go from here?
Reply #6 - Nov 13^th, 2009 at 5:35pm

I went to a reg MD at the very start of these attacks about a week ago and then again today. Today I told him that I thought what I was experiencing were cluster headaches. He told me that CH's are just a term for migraines that occur in clusters. I told him that what I was having was much worse than my usual migraines. I even described the sensation to him and proceeded to burst into tears at the shear thought of it. He told me that he had never heard of headaches that only come on at a certain time. He also said I'm not the "typical" cluster headache sufferer. I set up a referral appointment with the Neuro for next week but I'm terrified for tonight to come since I know I'm going to have to go through it all again. My question is- is the timing aspect normal for CH's? I wasn't sure if the Dr. I've been seeing for the prob just isn’t familiar with the condition or if my symptoms really are abnormal.

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Redd CH.com Sponsor Offline Posts: 8457 Stevens Point USA Wisconsin Gender:	Re: Where do I go from here? Reply #7 - Nov 13^th, 2009 at 5:52pm Sounds like you GP is a duffus. Not all physicians are versed in cluster headaches, and therefore you need to see the Neuro, and as we have all said, you need the MRI at least to rule out anything more serious.
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lorac

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Re: Where do I go from here?
Reply #8 - Nov 13^th, 2009 at 6:05pm

mlmasd00 wrote on Nov 13^th, 2009 at 5:35pm:

I went to a reg MD at the very start of these attacks about a week ago and then again today. Today I told him that I thought what I was experiencing were cluster headaches. He told me that CH's are just a term for migraines that occur in clusters. I told him that what I was having was much worse than my usual migraines. I even described the sensation to him and proceeded to burst into tears at the shear thought of it. He told me that he had never heard of headaches that only come on at a certain time. He also said I'm not the "typical" cluster headache sufferer. I set up a referral appointment with the Neuro for next week but I'm terrified for tonight to come since I know I'm going to have to go through it all again. My question is- is the timing aspect normal for CH's? I wasn't sure if the Dr. I've been seeing for the prob just isn’t familiar with the condition or if my symptoms really are abnormal.

Fire that dr right away... Clusters usually come the same time every day..(usually) A lot of doctors don't have a clue about CH.
Get to the neurologist soon, and once there, be sure to ask for Oxygen. It is a life saver. Read all about it on the left <<<<<<For most people it will stop the pain within 5 minutes.

In the mean time,,,,you might try some Melatonin from the drug store...take it before bed and it WILL help some. also those energy drinks with Taurine will help a lot.
Most of us have been misdiagnosed over and over till we find the right doc. so just hang in there.
keep us posted as to your progress. lorac

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Joni

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Re: Where do I go from here?
Reply #9 - Nov 13^th, 2009 at 6:32pm

Everything you have said sure sounds like clusters to me. And yes, they are very often at the same time every day, especially until you start messing with them with medication, etc. For me, that can make the pattern change. My sister even has them at exactly the same time every day to the minute almost.

Everyone has already said it well...get a neurologist, meds to prevent and abort, energy drinks, don't drink alcohol, log your headaches, print and take the medical info to your doctor just in case, and most of all...ditch what the current doctor is telling you! He just doesn't know, which is unfortunately the case so often with regular doctors and even some neurologist.

You will be okay once you get control of and educated about your headaches.

Good luck!
Joni

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Experience: That most brutal of teachers. But you learn, my God do you learn. -C. S. Lewis

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Marc

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Re: Where do I go from here?
Reply #10 - Nov 13^th, 2009 at 6:51pm

It's already been said, but I'll repeat it anyway:

Get a competent Neurologist to work with. NOW is the time to act - not later. Tell us where you live and will likely get a personal recommendation for a doctor who understands how to diagnose and deal with these.

Without hands-on experience, most doctors simply don't understand - so they simply prescribe things like pain killers. Bad move................

It is up to YOU to take control of the situation and deal with it. No one else can do that for you, so invest a few hours and read, read more - and then read even more on this site.

You cannot find more accurate information on this subject anywhere else on this planet, no matter how hard you try.

While you're at it and in case I didn't mention it, read some more on this site......... Wink

Invest in yourself.

Marc

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Weatherman CH.com Veteran Offline Beat the Beast! Posts: 159 Charlotte, NC Gender:	Re: Where do I go from here? Reply #11 - Nov 14^th, 2009 at 12:13am What Marc said!
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mlmasd00

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Re: Where do I go from here?
Reply #12 - Nov 19^th, 2009 at 10:09am

Update: So, I went to the neuro, he said it sounds like a "migraine-like headache" and possibly a cluster headache but that it could be a brain tumor as well. I have an MRI scheduled for early Monday but until then he won’t give me any meds or anything.( He also said he doesn’t prescribe oxygen for these type things because its only a temporary fix). Said he needs to know it’s not something serious before giving me a prescription- which makes since, but what am I supposed to do until them?!?! I am EXHAUSTED! The headaches have woken me up 3-4 times a night each time more painful than the last. I haven’t slept for days and I have to work 8am-6pm most days, which means I can’t sleep during the day. I talked to my general practitioner and asked him what was I supposed to do until the MRI to deal with this and you want to know what he suggested? That I see a psychiatrist! Is this really how my life is going to be from now on??? I am so tired and just don't know what to do.... Cry

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Martin

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Re: Where do I go from here?
Reply #13 - Nov 19^th, 2009 at 10:30am

I know that you can get welding 02 without a prescription. You can obtain all the things you need (high-flow regulator, non-rebreather mask) and you're good to go. The oxygen is the exact same, no need to worry about quality.

Ask Marc, he's always pushing the welding 02, and he's very helpful.

melatonin before bed may help you sleep. caffeine or redbull could help the pain if you get woken up...

sucks that he wouldn't give 02. temporary fix?? as far as I know, there is no cure for clusters. ALL WE HAVE ARE TEMPORARY FIXES!!!! your neuro is WHACK, but they're right; get an MRI and rule out serious problems.

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Jrcox CH.com Veteran Offline I Love CH.com! Posts: 123 FARMINGTON, MN Gender:	Re: Where do I go from here? Reply #14 - Nov 19^th, 2009 at 2:22pm I am very sorry you found us. but welcome to your new home. Hope to see you around. This is single handily the best place on earth for these headaches. Take care PFDAN's Jrcox
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Marc

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Re: Where do I go from here?
Reply #15 - Nov 19^th, 2009 at 4:25pm

mlmasd00 wrote on Nov 19^th, 2009 at 10:09am:

Update: So, I went to the neuro, he said it sounds like a "migraine-like headache" and possibly a cluster headache but that it could be a brain tumor as well. I have an MRI scheduled for early Monday but until then he won’t give me any meds or anything.( He also said he doesn’t prescribe oxygen for these type things because its only a temporary fix). Said he needs to know it’s not something serious before giving me a prescription- which makes since, but what am I supposed to do until them?!?! I am EXHAUSTED! The headaches have woken me up 3-4 times a night each time more painful than the last. I haven’t slept for days and I have to work 8am-6pm most days, which means I can’t sleep during the day. I talked to my general practitioner and asked him what was I supposed to do until the MRI to deal with this and you want to know what he suggested? That I see a psychiatrist! Is this really how my life is going to be from now on??? I am so tired and just don't know what to do.... Cry

Your doctor is at least making the move to use imaging to rule out the dangerous stuff.

In the mean time, he is screwing up in not addressing your primary immediate need: pain relief. Unfortunately most doctors really don't understand the level pain that CH sufferers are forced to endure.

I would call him back and ask again for O2 NOW as a temporary and safe means of reducing the agony until a firm Dx is reached. Agree with him that O2 is temporary fix, but that is exactly what you need!

As far as the long term: If you have CH's don't panic. You will find a treatment course to make them far more manageable than what you are experiencing now.

In the mean time, spend some SERIOUS time reading this site. You will be far more able to determine if your doctor is knowledgeable and up to date on CH treatment.

Marc

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