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Misconduct

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Good morning, newbie here :)
May 12^th, 2010 at 7:49am

Good morning, isn't that the way to start a day off without pain? My name is patrick I am 29 from central, Florida. After a couple of years or so and a good dozen doctor visits I finally stumble for my yearly eye exam and was just lucky enough to have a doctor who remembered what chronic cluster migraines were from college! I finally hate a date with a neurologist coming up in June, perhaps I can finally get the medication I needed.

My condition is Chronic, I suffer a good 5-10 attacks per day. So far on my 4th day and only grateful I am able to wake up right now pain free.

Some tips I learned in my time, I drink BAWLS which is a pure caffine and sugar based energy drink. I tried redbull however the salt, caffine and sugar really just makes you jittery. Also Bawls has twice the caffine. Also I keep vicoden handy, usually when the headaches come on, I keep them ready because I have known to have attacks for hours on end at night.

Hot showers along with drinking the Bawls tends to work, I believe the hot shower enables me to breath easier for time being until I can get oxygen in a few weeks. But mainly only way I can stop it, is wait for the phantom pain in the beginning.

Hope everyone has a wonderful day Cheesy

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Potter

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Re: Good morning, newbie here :)
Reply #1 - May 12^th, 2010 at 11:20am

Misconduct wrote on May 12^th, 2010 at 7:49am:

Good morning, isn't that the way to start a day off without pain? My name is patrick I am 29 from central, Florida. After a couple of years or so and a good dozen doctor visits I finally stumble for my yearly eye exam and was just lucky enough to have a doctor who remembered what chronic cluster migraines were from college! I finally hate a date with a neurologist coming up in June, perhaps I can finally get the medication I needed.

My condition is Chronic, I suffer a good 5-10 attacks per day. So far on my 4th day and only grateful I am able to wake up right now pain free.

Some tips I learned in my time, I drink BAWLS which is a pure caffine and sugar based energy drink. I tried redbull however the salt, caffine and sugar really just makes you jittery. Also Bawls has twice the caffine. Also I keep vicoden handy, usually when the headaches come on, I keep them ready because I have known to have attacks for hours on end at night.

Hot showers along with drinking the Bawls tends to work, I believe the hot shower enables me to breath easier for time being until I can get oxygen in a few weeks. But mainly only way I can stop it, is wait for the phantom pain in the beginning.

Hope everyone has a wonderful day Cheesy

Your post just doesn't make sense.

Potter

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Guiseppi

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Re: Good morning, newbie here :)
Reply #2 - May 12^th, 2010 at 12:37pm

Sounds like you need to get a solid diagnosis. Is it possible for you to get a referral to a neuro who specializes in headaches? You are decribing some symptoms of migrains, and some characteristics of cluster headaches. The reason an accurate diagnosis is so critical is that meds effective for one headache type, are worthless for another. And it's even possible you have a dual diagnosis of cluster and migrain headaches.

So first off, get a referral to a headache specialist. Then start keeping as detailed a diary as you can. When the headache starts, how fast it builds, how high the pain builds, how fast it goes away. Describe the pain, a sharp stabbing burning pain? A dull throbbing tension pain? A combination of the two at different times during the attack? Try to identify triggers, foods, alcohol, stress, relaxing, sleep cycle disruptions etc.

The more detailed the better. So much of the diagnosis will be in the details. That's why we stress so much that this is not a job for your GP. This is too specialized of a field. Good luck with the whole diagnosis process.

Joe

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Bob Johnson

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Re: Good morning, newbie here :)
Reply #3 - May 12^th, 2010 at 1:47pm

With Joe: do see a headache specialist, if you have the option. It's discouraging how many neurologists have such limited knowledge about Cluster.
=====
LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3. Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

; On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

6. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.

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Misconduct

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Re: Good morning, newbie here :)
Reply #4 - May 12^th, 2010 at 4:27pm

Guiseppi wrote on May 12^th, 2010 at 12:37pm:

Sounds like you need to get a solid diagnosis. Is it possible for you to get a referral to a neuro who specializes in headaches? You are decribing some symptoms of migrains, and some characteristics of cluster headaches. The reason an accurate diagnosis is so critical is that meds effective for one headache type, are worthless for another. And it's even possible you have a dual diagnosis of cluster and migrain headaches.

So first off, get a referral to a headache specialist. Then start keeping as detailed a diary as you can. When the headache starts, how fast it builds, how high the pain builds, how fast it goes away. Describe the pain, a sharp stabbing burning pain? A dull throbbing tension pain? A combination of the two at different times during the attack? Try to identify triggers, foods, alcohol, stress, relaxing, sleep cycle disruptions etc.

The more detailed the better. So much of the diagnosis will be in the details. That's why we stress so much that this is not a job for your GP. This is too specialized of a field. Good luck with the whole diagnosis process.

Joe

I am suffering Cluster migraine, and its chronic, there is absolutely no way to mistake the diagnosis. Anyone whose suffered a true bout of cluster migraine knows the pain you feel when your eye is about to explode, face drooping, the shadow pain that comes minutes before then slowing builds until you are simply unable to walk, function and the pains so passively strong you are immobilized for minutes to hour. Your nasal runs or gets clogged, eyes start tearing uncontrollably.

Only question is getting right treatment done. will see how the

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« Last Edit: May 12^th, 2010 at 4:28pm by Misconduct »

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Guiseppi

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Re: Good morning, newbie here :)
Reply #5 - May 12^th, 2010 at 5:35pm

Maybe ist' just the terminology then. Your'e calling them chronic cluster migrains and that's not something I'm familiar with. I'll bolster that statement with the fact I have no medical training and only know what I know about CH from this board. Wink

If you have cluster headaches, there is a wealth of knowledge on this board to help you manage them and ease the amount of suffering you experience. There are many great preventative medications like Verapamil, Topomax and Lithium to reduce the number and intensity of your hits.

There are some great abortive meds, imitrex nasal spray or injections, Oxygen......should be your first line abortive for CH it's cheap and works fast!

We have episodic cluster headache sufferers, and chronic cluster headache sufferers, pretty much the same pain it's just us episoics get remissions that can last for months, even years.

So again, maybe it's just the terminology.???

Joe

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Misconduct CH.com Newbie Offline I Love CH.com! Posts: 7	Re: Good morning, newbie here :) Reply #6 - May 12^th, 2010 at 6:08pm Probably so I have no knowledge on this, just what my local doctor who believes this is what I have called it "Cluster Migraine" However I keep seeing it under different names.
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Guiseppi

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Re: Good morning, newbie here :)
Reply #7 - May 12^th, 2010 at 6:21pm

Then more importantly, what's he doing to make it not hurt, regardless of what he calls it! Wink

If it is cluster headache in nature, and the pain you just described is, please read the oxygen info link on the left. 31 years with these things and nothing comes close to the speed and effeiciency of breathing pure 02. I can be completely pain free in less then 10 minutes. A majority of people who try it are having similar results.

For now, try chugging an energy drink at the first sign of an attack. I use sugar free Red Bull based on the taste. But any combining caffeine and taurine seem to work the same. It will abort or at least substantially reduce an attack for many if chugged at the onset. I also use it for those shadows, the dull, almost an attack but refuses to really take hold feeling. Suprisingly the caffeine and taurine don't make me jittery like a double espresso will.......and i tend to be sensitive to that kind of stuff.

Imitrex injectables are my last resort if I'm away from the 02 or for the rare occasions when the 02 won't kill it.

Hoping he has you on a regimen that'll help.

Joe

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Misconduct

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Re: Good morning, newbie here :)
Reply #8 - May 12^th, 2010 at 6:51pm

This may seem funny, but recently I had no clue exactly what I had, until I mentioned on a forums for a game called War in the pacific, he re-directed me here and so far in 1 day alone I canceled my original doctors appointment, to find a specialist with headache neurology.

I drink something called Bawls, its like redbull except it has no Salt, some people here might want to look into it, you can find it at any local Smoothie King (I am in central florida) Its pure Caffine and twice the caffine of a redbull.

I appreciate your input through guiseppi, I am just glad I finally figured out what I have. Biggest problem really is doctor visits, I have been unable to really afford a doctor, but the one I have made an appointment too is allowing to see me, treat me and allow me to make payments.

First sign of attack even the shadow pains, I used to go right for coffee, which worked 25% of the time, now I drink sugar free Bawls - along with BC Goodies which has caffine and has some pain killer in it for headaches.

Not sure what anyones stance is on BC goodies?

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Potter CH.com Alumnus Offline Team MOOSE DROOL Stinky Stuff on a Hook Prostaff Posts: 3600 Blgs.Mt. Gender:	Re: Good morning, newbie here :) Reply #9 - May 12^th, 2010 at 6:54pm Sitting still is impossible as is being immobilized by the pain. We do a little dance I call the happy feets dance. Do get a real diagnosis. potter
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Misconduct CH.com Newbie Offline I Love CH.com! Posts: 7	Re: Good morning, newbie here :) Reply #10 - May 12^th, 2010 at 7:00pm I am don't worry, I had to cancel my appointment for June 3rd because I found out he does not specialize in headaches. Why waste $400 to see a doctor that isn't going to help?
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deltadarlin

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Re: Good morning, newbie here :)
Reply #11 - May 13^th, 2010 at 8:07pm

Potter wrote on May 12^th, 2010 at 6:54pm:

Sitting still is impossible as is being immobilized by the pain. We do a little dance I call the happy feets dance.
Do get a real diagnosis.

potter

I hate to be the voice of dissension here, but Jimbo literally *freezes*, kind of bent over and puts pressure on the side that hurts (he has a permanent dent from where he's pushed in that one spot for so long).

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Erin

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Re: Good morning, newbie here :)
Reply #12 - May 13^th, 2010 at 8:19pm

Vicodin or Narcotics are the last thing you should be taking for these headaches...because the it only masks it for a little bit, the CH WILL come back more pissed off than before, AND it will bring a vicodin headache friend along just for fun.... once you get a neuro to give you a concreate diagnosis, that will be the last thing he prescribes, especially if your chronic, because then you risk addiction to the pain killers, ON TOP of Cluster Headaches, that's a bad combination.... listen to the Veteren's that post here, listen to their advice, what they say or the information they provide is priceless....I was recently diagnosed a month ago, and coming here and listening gave me the information I needed to be able to ask the right questions to my doctors and ask for the proper treatment.... This board literally saved my life...I was getting my affairs in order thinking there was no way that I could live with such pain, but in reading, asking and doing, I am pain free now 2 weeks....so.....listen to what we, they have to say, take it for what it worth, and trust me what they say is worth a lot! Good Luck!

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