how bad would you say the pain is?"  Now this question isn't about a CH, this is about my shoulder that has been hurting for about 3 weeks.  I immediately started comparing my shoulder to a CH.  No where even close in my mind.  My response (while laughing), "Well, compared to my cluster headaches, I really don't know what to say".  The Doctor smiled and said "On the regular pain scale, where does it rank?  So I gave my shoulder pain a 5 or higher. 

You know, I've read this on here before, but this is my first experience trying to separate the two pain scales in my head.  And I have to admit, once you've had a cluster headache, everything else pales in comparison.   At least the Doctor I saw today seemed to understand what a CH is and didn't look at me as if I was an alien. 

Not too bad of a Dr Appt.  Getting some prednisone to help with the shoulder; and looking forward to getting all my test results and passing that info along to my Neuro to see what the plan of action will be for my CH & MS going forward. 

Just wanted to share an experience and validate those who have posted on the pain scale subject before.  Hope everyone is doing well and PF!  :)

Payg

I'd suggest that it is essential to ensure that you do one of the following:

• Use a "normal" pain scale, ignoring your CH experience
  
• Explain how you have CH, so your pain scale is very much different to most people and ensure that they understand CH pain is different
  

Otherwise you'll describe what is agony to a normal person as say a 3 or a 4, with the doctor ruling out possible some possible diagnosis on the grounds that it just isn't painful enough.

This happens to be monthly when I visit my pain mgmt doctor. As much pain and suffering i've endured these past 8 months with three (3) spine surgeries, I never once have said 10 because of the Kip Scale. Great advice by Mike to use the "normal" pain scale.

-Gregg in Las Vegas

When you go into a hospital in Australia you're assessed by nursing staff using the Visual Analog Scale (VAS), otherwise known as "If Zero is no pain and Ten is the *worst pain imaginable*, what is your score out of ten?".

I used to take into account CH pain, then rate my own pain score for my other ailments (spinal injuries, musculo-skeletal problems) and got nowhere with this approach, as I have arrived in hospital and sat through Kidney stones, gall bladder issues and all sorts with no pain relief, as I was being well... honest and calling a broken vertebrae and crushed nerve a 6 or 7/10 when it was very, very painful.
Fact is, it was not a CH attack.

I took consensus on this a long while ago and generally, it seems most CHers are doing themselves a huge disservice if they take into account their CH pain, when considering any other pain. If I've just had surgery, or broken a bone, torn a ligament or whatever, if it's painful, I don't openly go referring to my CH pain at all and after 25 years of zero pain relief in hospital settings, they finally got out the drugs one needs for the injury or ailment at hand.

One of the troubles here in Australia is the wording that nursing staff in hospitals have to use when applying the VAS (1-10) pain scale.
"Worst pain imaginable". Well, that's why we're here.
We know the worst pain and don't have to imagine it!

If I tell a nurse I have the worst pain imaginable 4-6 times per day, they think I'm "catastrophising" my pain and I'll get no pain relief for other ailments.
Nursing staff asking you to conceptualise pain (imagine it) seems very inept. I've not had a major organ removed nor a major car accident, surely there are others with real references to this kind of "imaginable" pain, who've actually experienced it and don't have to imagine...

As much as I personally dislike the Kip scale (and respect to Bob Kipple where it is due) I think one needs to keep a cluster/Kip scale up the sleeve just for CH and a VAS for every other pain.
Mike is spot on as usual.

Joking with the nursing staff will not help...
From time to time when they ask me that dreaded question... I answer with Pi; π a mathematical constant..
It seems apt for the chronic CHer who has constant interictal pain (shadows and Migraineous component), it never ever stops and goes around in circles = π

I prefer the Nigel Tufnel approach... One of the greatest rhetorical arguments ever mounted over "10" being the upper limit of measurement in what is subjectively felt.
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Yeah, but these go to Eleven! >:(

edit; typos

This has a good write up on the VAS - Visual Analogue Scale.

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It suggests the following pain levels, using the scale measurements:

• 0-0.5 no pain
  
• .5-4.4 mild pain
  
• 4.5-7.4 moderate pain
  
• 7.5+ severe pain
  

Thanks for the input CH Brain, Gregg & Mike NZ.  I'm agreeing with all of you on this one and I will keep the CH pain scale to myself and only pull that one out of the bag when dealing with my Neuro.  I know she completely understands!

In retrospect, when I gave the Dr. a Level 5 for my shoulder pain last week, I probably under-scored the pain.  And I can see where this could happen to all CH sufferers.  But like I said, the Dr. did seem to know the difference between CH pain levels and the "regular" pain scale.  So at least I was prescribed some prednisone and the shoulder is feeling much better.

I suppose I've been EXTREMELY lucky, because I've never had a whole lot very painful things happen to me...no major surgeries, no broken bones, no car wrecks, no children, no back pain.  Maybe that is why the question threw me off so much.  My one point of reference for excruciating pain is ...drum roll please... A CH!  (switching to the sarcasm font) Wow, How did I get so lucky!   :-?

I should have all my test results back next week and I'll see where my D3 levels are as well as all the other vitamins, etc.  I've had some major fatigue over the past month or so and don't know whether to contribute that to my MS or just low vitamin levels.  Hopefully all will be well.  The really good news is that I haven't had a CH since May 12th!  Don't know if that's because of the D3 that I've been taking or if the prednisone has helped to stave it off for a little while.  Regardless, I'm keeping good thoughts and a good attitude! 

Thanks again!  Hope you all have a great and PF week! 

Payg  ;)

Hey Payg,

It's the Vitamin D3 that's preventing your CH... but you may need even more for MS...  I'll send you a pm on that topic...

Please share your 25(OH)D status with us if you feel comfortable doing that...  My wife keeps hers up around 120 ng/mL...  mine averages 130 ng/mL but I've also had it as high as 176 ng/mL...  As long as my serum calcium stays within it's normal reference range... my PCP just smiles and looks the other way...

Take care and please keep us posted.

V/R, Batch

Good Morning, Batch. 

I appreciate you weighing in.  I did want to provide you with my test results.  In fact I went back to 2012 for comparison purposes to see how things have changed.  Here goes...
2012 -- 30.4 NG/ml VitD 25--Hydroxy
2017 -- 47 NG/ml VitD 25 Hydroxy (seeing some improvement here but have only been taking 5000 IU/day for the last month)

2012 -- 268 Vit B12
2017 -- 190 Vit B12 (low) 

2012 -- 123 Iron Serum
2017 -- 257 Iron Serum (high)

One last item, I shouldn't have bragged about how long it had been since my last CH.  Never fails...guess what woke me up at 1:30 a.m.   :(  It wasn't too bad -- I'd rank it a mild CH.  Got out the 02 tank and 25 mins later I'm sleeping, sitting up, on the couch.  The only evidence this a.m. is that my eye is still swollen and I'm wearing my glasses. (Yuck! )  But I'm still grateful that it had been almost a month since my last one.

So, Batch, are there some "co-factors" that I should be taking that will help in the absorption of VitD?  I'm a tad concerned about the high iron level and the low B12.   What does your research say?  Of course, I'll be sending this info to my Neuro and presenting this same question to her to see if she has any advice prior to my appt in July. 

Again, I appreciate your input, Batch!  Hope my info is of some use.  Let me know if I can answer any other questions. 

Hope everyone is having a great and PF day! 

Payg

Hey Payg,

Good question and thanks for the lab results... They do help... It's important to start with a vitamin D3 maintenance dose of 10,000 IU/day plus all the cofactors as they are needed in the metabolism of vitamin D3 and in its CH preventative role in genetic expression. 

Once you've been taking a maintenance dose of 10,000 IU/day vitamin D3 for at least two months, get another lab test for your serum 25(OH)D, total calcium and PTH...

If you're pain free at that point and your serum 25(OH)D is over 100 ng/mL switch to a vitamin D3 dose based on your weight at 50 IU vitamin D3 per pound of body weight/day or 110 IU vitamin D3 per Kg body weight/day.  You can also adjust this dose up or down based on your body mass index (BMI).

If your 25(OH)D is still less than 80 ng/mL, increase the maintenance dose by taking 15,000 IU/day on Saturday and Sunday while taking 10,000 IU/day Monday through Friday... 

If you haven't already done so, you can  download the latest version of the anti-inflammatory regimen CH preventative treatment protocol at the following link.  Be sure to share a copy with your PCP or neurologist.   That way you're both singing from the same sheet music when you ask for the suggested lab tests.

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You can also scan the following QR code with your smart phone and it will download a pdf copy of the treatment protocol to your phone.  The QR Scanner app is free.  It takes less than 10 seconds to download and install.

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Take care and please keep us posted.

V/R, Batch