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New here, not to CH's (Read 1536 times)
SKI74
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New here, not to CH's
Sep 1st, 2013 at 12:21pm
 
Hello all. I'm a 39 y/o father, husband and AD Air Force.
I'm in good shape for the age, pretty healthy overall though.

Back in 2007 while in Korea this all started, mildly though. I would get woke up in the middle night with pain in my head over my right eye, sinus pain as well. Shrugged it off as sinuses. A few ibuprofen and back to sleep, no issues.

2008 back to the states. Then holy s**t I got pain like I've never felt pain before. I've blown my knee out, broken bones, gashes, you name it...not even close to that feeling.

Dr. told me it was CH's, rare, yet I have it. Great I was thinking. to myself.

FF to 2013, the CH's are here again and here I am. Nice to meet you all.

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« Last Edit: Sep 1st, 2013 at 12:26pm by SKI74 »  
 
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maz
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Re: New here, not to CH's
Reply #1 - Sep 1st, 2013 at 12:51pm
 
Hi SKI74, welcome to clusterville.  Smiley Sorry you had to find us but I'm glad you did.

Familiarise yourself with this site and read every thread on every board. You will find the best scource of help here, better than you'll get from the medical profession.
Because CH is rare few doctors know about it. There are people here from all over the world and they all say the same thing - years and years of misdiagnosis followed by more years of the wrong medication, resulting in years of this vile pain. We all know the feelings of utter despair and fear this brings.

We are all ages, all nationalities, all different in every way - except one. We all have CH. Here you will find many different possibilities for controlling "the beast". In particular, go to the "medications, treatments and therapies" board and then to the thread titled "123 days pain free and I think I know why". This vitamin regime has taken the boards by storm and seems to be successful for 80% of those who try it.
Also look at the "oxygen info" link on the left of your screen

If you want to talk, vent or just rant you will find someone here always willing to listen and offer support. These are the nicest people in the world.

As I said, read, read, and read more. Stick around and let us know how you are doing.

Maz.
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metrolamar
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Re: New here, not to CH's
Reply #2 - Sep 1st, 2013 at 1:24pm
 
Welcome Ski74,

I too am pretty new here on the website.  But I hear ya when you say the worse pain ever...there is no mistaken when your cycle starts.  For me it is a very depressing day because I know that my cycle last a long time (8 to 12 weeks normally) which seems like eternity. 

But there is a lot of good info here...Oxygen is one of the best things you are gonna find to help.  Since registering I have read a lot of post on here,  some good and some bad.

Sorry to hear you are hurting but just know you are not alone.  Keep us posted as to how you are doing.

Best wishes to you
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Bob Johnson
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Re: New here, not to CH's
Reply #3 - Sep 1st, 2013 at 3:23pm
 
It will help us to direct you to good sources of assistance if you will tell us where you live (city & state, if U.S. or country). At the Home page: Help button-->Edit & Profile --> Location.
=============
Are you seeking any particlar forms of info?

Have access to a doc who is experienced/skilled in treating headache? Too many  years since I was administrator of the medical unit at McGuire AFB so don't know how easy it would be to get a referral to ??? where the needed skilll is available.

So, some background info would be helpful.
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Bob Johnson
 
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SKI74
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Re: New here, not to CH's
Reply #4 - Sep 1st, 2013 at 10:36pm
 
Bob,

The profile section is not wanting to update. I'm in Glendale, AZ. (Luke AFB) area. If anyone is from the area and knows a good doc. to go see, that would be great. I have a very good PCM here on base. He is just a MD but, the best I've had in my 11.5 years in. It's very easy to get a referral here since the MTF here is very limited.

Background info. (let me see if I can shorten this)

This started while in Korea in '07. Very mild like sinuses, few ibuprofen, back to bed.

'08 went to ID. and bam, got hit with a pain like no other. (Oct-Dec time frame) tried a few drugs, no luck.

'09 same as above. Always seems to happen when I lay down. A few times during the day, rare though.(Oct-Dec)

'10 Same as above still in ID.

'11 Back to Korea. Starting getting woke up after about 1.5hrs of sleep. Then I was good the rest of night. (Oct-Dec)

'12 Came to AZ. Skipped this cycle. (what a great year) Thought it may have something to do with little to no humidity here.

'13 Monsoon season. The humidity is very right right now. Major difference this cycle is soon after I lay down, bam! Plus it is lingering all day long like a sinus headache. I think I've had 7 hours a sleep in the last 4 days. Sleeping in a chair elevated seems to help a little. Also, alternating hot/cold compress seems to work this time (most anyway).

That's about it and all I can do till the MTF opens back up Tuesday. Hope that helps with the background for you.





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TeeJ2379
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Re: New here, not to CH's
Reply #5 - Sep 1st, 2013 at 11:39pm
 
Hi Ski -

Remember any of the drugs you have tried? Try to get to a headache specialist - its the best way to get some relief.  If you are in really bad, ask your doc for a predisone taper for 2 weeks - I did 80mg taper and went pf while I got on a preventive (Verapamil).

Try Melatonin before sleep - most need 10mg-15mg but you should try some different doses to see what helps you.  Natural sleep aid that helps some get a good nights sleep.  Regular sleep schedule helps if you can.

Look at the vitamin D regiment on this site:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

80% of folks who try it find reduction in symptoms in a few weeks and some go pain free after a few months.

Energy drinks help!  When you feel the pressure building, chug a Red Bull or Monster (anything with caffeine and taurine )

Keep asking questions and keep reading here - you will learn a lot and hopefully find strength.  Peace and PF nights man!
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Pain is a wonderful teacher and motivator...
 
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wimsey1
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Re: New here, not to CH's
Reply #6 - Sep 2nd, 2013 at 8:32am
 
Welcome, and thank you for your service! Being episodic, it is more difficult to nail down a proper preventative (like verapamil or lithium) since they take time to build up in your system. Not impossible, but harder. Depends entirely on the length of your cycle. You probably want to spend more time concentrating on abortives: O2, energy drinks, Imitrex, DHE...that kind of thing. They work and ought to be part of your personal arsenal. The D3 regimen has been wonderful for some as well. Check that out first chance. Ask any questions. God bless. lance
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Bob Johnson
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Re: New here, not to CH's
Reply #7 - Sep 2nd, 2013 at 10:20am
 
Good news! AF hasn't changed that much.

Essential that you receive a good workup and diagnosis before starting any treatment. There are many disorsders which mimic Cluster but which are not headache disorders.
----
While this approach works for those in the open market, I suspect that it will be the responsibility of USAF med people to search AF docs to see if anyone has the needed skills. If zip, then this approach will come into play.
=======
LOCATING HEADACHE SPECIALIST

1. 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.

2.  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.

3. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register; On-line screen to find a physician.

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

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

Items 3,4, & 5 will help find a specialist near to you around the country.







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Bob Johnson
 
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SKI74
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Re: New here, not to CH's
Reply #8 - Sep 4th, 2013 at 12:53am
 
wimsey1 wrote on Sep 2nd, 2013 at 8:32am:
Welcome, and thank you for your service! Being , it is more difficult to nail down a proper preventative (like verapamil or lithium) since they take time to build up in your system. Not impossible, but harder. Depends entirely on the length of your cycle. You probably want to spend more time concentrating on abortives: O2, energy drinks, Imitrex, DHE...that kind of thing. They work and ought to be part of your personal arsenal. The D3 regimen has been wonderful for some as well. Check that out first chance. Ask any questions. God bless. lance


First, I'd like to say thanks you to you all for the replies and possible helpful hints.

Last night my buddy had to take me to the ER. I was surprised that when I told the Dr. CH's he knew what I was talking about. They gave me a cocktail shot as they called it. Anti-inflamitory, pain relief, valium, and some O2. After 12 hrs of sleep in 5 days that worked. Too bad they are back today though. They gave me Butal and Tramadol. No such luck working though.

I've done  Imitrex in the past, that didn't work either. Tried an energy drink the other day. Never again, I thought my heart was going to leave my chest. lol. It is hard to pin down what works being episodic to nail anything down. My cycles last from 2 to 6 weeks. I'm trying to get into see my PCM tomorrow, he's booked till next week though. His asst. is gonna try and squeeze me in. I explained what was going on and said if I have to wait that long, it will be frequent trips back to the ER.

I'm going to look into the D3  regimen. Fairly cheap really. Plus, you never know till you try. It's been trial and error anyway. Because every year the beast changes what it does.

Thanks again everyone.
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« Last Edit: Sep 4th, 2013 at 12:55am by SKI74 »  
 
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TeeJ2379
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Re: New here, not to CH's
Reply #9 - Sep 4th, 2013 at 3:07pm
 
Shame about the energy drinks - its a life saver for me - I couldn't function at work some days with out my Monster.  Keeps my shadows down on bad days and made my CH more mild when I was having full symptoms.  Sometimes a Naproxen a Monster got me bright eyed and bushy tailed in just about 15 minutes.
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Pain is a wonderful teacher and motivator...
 
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Bob Johnson
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Re: New here, not to CH's
Reply #10 - Sep 4th, 2013 at 5:14pm
 
YOu 've just confirmed that you have access to a good and deep medical system. Why would you not take advantage of it?

The whole area of headache is far more complex than most folks realize. Many disorders mimic Cluster but many are reallly quite serious. NOT a situation for self-diagnosis and self-treatment.

See:

Link to: cluster-LIKE headache:

IN: "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"
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Bob Johnson
 
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