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Cluster Headache Help and Support >> Cluster Headache Specific >> Is a Doctor's Visit Worth It?
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Message started by spacel0rd on Apr 20th, 2012 at 7:14pm

Title: Is a Doctor's Visit Worth It?
Post by spacel0rd on Apr 20th, 2012 at 7:14pm
I've had my first CH attack when i was 23 in 1993 (I'm now 42).  It wasn't all that bad.  I didn't know what it was, but I found it odd that i was getting many headaches all of the sudden.  It last for about 2 weeks. 
   Then, in 1996, I got hit again.  It was much worse, so I drove myself to the hospital.  No one could find anything wrong with me.  They charged me and sent me home.

The last time I was attacked was 5 years ago.  I was starting to think I "out grew" them, since I normally got them every 2-3 years.  But, yesterday I got hit at 6am, 2pm and 11:30pm.  I NEVER got three in one day.  I normally got them every 36 hours within a 2-3 week cycle.

Now...After reading online, I see how everyone always says that there is no cure.  It seems like doctors can't do crap for anyone.  I don't want to pay for any kinda shots I'd have to give myself, and I ain't about to walk around with an oxygen tank. 
So...is it even worth it to go to the doctors?  I mean, this will hopefully be over for me within 2-4 weeks.  I know what I have...I dont need to spend hundreds of dollars for a doctor to tell me. 

It seems that my headaches are a wee bit less painful then some of the people I saw on youtube vids.  I mean, I squirm, grind my teeth, stretch open my mouth, grab on to pillows and such....but I dont need to be held down or anything.
So...do most of us just wait out the cycle?   I sure hope this is over within a few weeks...and then done for another 5 years.
However, I'm a little concerned that I had three in a row every 8.5 hours...and then a 4th one 15 hours later.  That seems a bit much for my regualr cycles.

Title: Re: Is a Doctor's Visit Worth It?
Post by Brew on Apr 20th, 2012 at 7:46pm

Quote:
I sure hope this is over within a few weeks...and then done for another 5 years.

If wishes were horses, beggars would ride. Or as my gramma used to say, "You can wish in one hand and $hit in the other - see which one fills up first."

If nothing else, get the diagnosis and beg, plead and steal for a prescription for high-flow oxygen delivered through a non-rebreather mask.

You'll be glad you did.

Title: Re: Is a Doctor's Visit Worth It?
Post by Batch on Apr 20th, 2012 at 8:01pm
Spacel0rd,

The odds are you are borderline vitamin D3 deficient.  Each time your serum level of 25(OH)D drops, you have a CH cycle...

See your PCP for the lab test for 25(OH)D, the serum level metabolite of vitamin D3.  The normal reference range is 30 to 100 ng/mL.  However, CH'ers have presented with active CH at concentrations of 25(OH)D as high as 42 ng/mL. 

Moreover, CH'ers who have gone pain free on the anti-inflammatory regimen with 10,000 IU/day vitamin D3 and then had this test have all come back with results between 60 and 110 ng/mL.

If your lab test for 25(OH)D comes back < 42 ng/mL, you may be better off seeing an endocrinologist or Integrative/Homeopathic physician to have your vitamin D3 deficiency treated... 

It's unfortunate, but too many neurologists get goosey when you tell then you need 10,000 IU/day vitamin D3.  Endocrinologists and Holistic physicians have no problem telling patients they need a dose of 10,000 IU/day vitamin D3.

The following chart explains why you need this much vitamin D3.

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The anti-inflammatory regimen consists of the following supplements shown below.  I buy them at Costco for $35.  That works out to 20 cents a day and a 5-month supply.

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I take two of each as shown below:

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I've also been pain free since the second day after starting this regimen in October of 2010...  At that point I had been Chronic with an average of three hits a day for the previous 6 years... 

To date, the efficacy of is regimen is holding at 71%  with 100 CH'ers out of 140 who started this regimen achieving a pain free response or have had a dramatic drop in the frequency and severity of their CH.

You can see what other CH'ers are saying about their experience with this regimen at the following link:

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Take care and please keep us posted.

V/R, Batch

Title: Re: Is a Doctor's Visit Worth It?
Post by BobG on Apr 20th, 2012 at 10:37pm
"That seems a bit much for my regualr cycles."

About the only thing regular with cluster headaches is how regularly they change.

Please, see a doctor.

Title: Re: Is a Doctor's Visit Worth It?
Post by Guiseppi on Apr 20th, 2012 at 11:27pm
Welcome to the board, you have been given awesome advice, please follow it. Check out this link for oxygen, I went from 90-120 minute head bangers to 6-8 minute aborts just huffing the 02:

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As to the regimen Batch talks about, I'm on it permanently. ;)

Joe

Title: Re: Is a Doctor's Visit Worth It?
Post by Bob P on Apr 21st, 2012 at 7:13am

Quote:
I don't want to pay for any kinda shots I'd have to give myself, and I ain't about to walk around with an oxygen tank.

Sounds like you've made your bed.  Nothing left to do but lay in it.

Title: Re: Is a Doctor's Visit Worth It?
Post by Bob Johnson on Apr 21st, 2012 at 7:53am
You are asking a question which you have already answered.

Cynicism and ignorance close many doors--but they don't resolve the problem. In this sense, you are in control of your pain.

Title: Re: Is a Doctor's Visit Worth It?
Post by Linda_Howell on Apr 21st, 2012 at 11:17am
excellent advice from everyone here.   I do have to say this though..


Quote:
....but I dont need to be held down or anything.


If anyone tried to hold me down during a CH, they'd be pushing up daisys real quick.   ;D

as far as getting some oxygen, there is no need to "walk around with an oxygen tank"  as you put it.  We have tanks at home that we use when getting hit and some put a smaller version in their trunk for when we get hit in public. 


Title: Re: Is a Doctor's Visit Worth It?
Post by spacel0rd on Apr 21st, 2012 at 8:27pm
Thanks all.  I did pick up some D3 and I already take fish oil. I've also been taking Melatonin at night.  The headaches this session seem to happen a little bit more frequently but they aren't as intense as the past. If this session goes past the "usual" three weeks, I'll take my azz to the doctor.

Title: Re: Is a Doctor's Visit Worth It?
Post by -dvb- on Apr 23rd, 2012 at 11:36am
Hello Spacel0rd,

I held your position on the dr. visit for the first few days of my current cycle (diagnosed in March). After 3 weeks, was glad I made the appointment as it took a month before I could be seen. Find yourself a specialist and go! Even if it's only for the formal diagnosis and O2. You can wait out the cycle if you want to, but you don't have to.

Also, glad you picked up the D3 regimen...made a huge difference for me while waiting for the Neurologist appointment.

-dvb

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