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Any help would be great! (Read 3005 times)
lvtobhappy
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Any help would be great!
Nov 20th, 2015 at 3:57pm
 
I stumble upon the site yesterday, I’m so glad I did. 
A little background….
I was diagnosed with Cluster Headaches 5 years ago, after seeing many doctors, several trips to the ER and several pain medicines that never did work.  When my neurologist first diagnosed me I thought he was crazy and even crazier treating me with blood pressure medicine.   It turns out he was so right!

My first cycle was in spring of 2010, then my second November 2012 and now November 2015.  It comes between 11pm -2:30 am, I feel the pressure same spot all day long, more some days than others, but it does not break through until night.  Left temple, same spot, same everything.  Since the 6th of this month I have had two nights they did not break through.  This cycle seems to be more out of control, I never have them during the day but had one today (I am very worried!!).  The medicine is not working like it did in 2012.  I take Verapamil 80mg 3x a day and Sumatriptan 20mg nose spray at night after it breaks through.  With the spray they have been lasting about 20-30 mins,  but last night is was over an hour. 

I don’t have words for the pain!! It is even hard to explain the feeling when it goes away, I feel almost an instant relief, it is like a “rush” (weird) .

I don’t drink alcohol of any kind during the cycle (miss my wine), nothing carbonated, eat high protein low fat.  I was told to stop exercising (killing me, normally do yoga twice a week), but I do drink one cup of coffee in the morning.  Trying to eliminate all the triggers.. but does not seem to be working this time.

I am just looking for some help, anyway to slow these things down, stop them or just make the pain less?
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helliknowpain
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Re: Any help would be great!
Reply #1 - Nov 20th, 2015 at 4:54pm
 
You're in the right place here. Read all you can on this site.
Investigate the D3 info as a preventative, and lots of abortives for you to try too.

But I will leave it up to the heavy weights on this site to inform you. Be patient, they will chime in and help you.
I know this because they helped me.  Smiley
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Hoppy
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Re: Any help would be great!
Reply #2 - Nov 20th, 2015 at 5:21pm
 
Ivtobhappy wrote, I take Verapamil 80mg 3x a day

That dosage is normally to low when it comes to treating CH's! You need to be taking 360-480mg/day, but do look at the vitamin D regime on here, with the beast visiting us clusterheads in the Spring and Fall it has a good record to become pain free, myself included.

Hoppy
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MDR
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Re: Any help would be great!
Reply #3 - Nov 20th, 2015 at 6:02pm
 
what Hoppy said about the D3 read read read coffee at the on set of the ch would stop mine but I only do the vitamins now.

Mark.

plus a lot of people do red bull at the on set of there ch.
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lvtobhappy
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Re: Any help would be great!
Reply #4 - Nov 20th, 2015 at 6:09pm
 
Thanks for the feedback…I been reading through the site and it does appear my dose is pretty low, I will start with getting that corrected.   I am not familiar with the vitamin D regime, but from what I read it is 10,000 IU/day D3, I will pick some up today on my way home. 
Thanks again, a little bit of hope goes along way when dealing with this.  Smiley  I get all kinds of advice on migraines from family, they don’t understand this is different. 
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lvtobhappy
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Re: Any help would be great!
Reply #5 - Nov 20th, 2015 at 6:16pm
 
coffee I can do... I love coffee. Cheesy I have been trying to limit it, did not think I was suppose to have it.  I am not sure why I thought that?
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helliknowpain
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Re: Any help would be great!
Reply #6 - Nov 20th, 2015 at 6:35pm
 
Hold off on the D3 purchase until you hear from "Batch". There is other stuff that goes with the d3. You'll be hearing from him I'm sure.
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Peter510
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Re: Any help would be great!
Reply #7 - Nov 20th, 2015 at 6:39pm
 
I too advocate the D3 regime. However, you need to read up thoroughly about it, which you can do here under the heading of Medications and treatments. The thread you want is "123 days pain free...." A lot of reading, but essential before you start.

Do  NOT just start taking 10,000 or 20,000 iu daily doses of D3 on its own. You need to take a number of other Vitamins too, to very specific doses.

I am very surprised your Neurologist did not prescribe oxygen at the outset. It is the primary CH abortive.

Read the tab on oxygen on the top left of this page.

Read as much as you can here and ask loads if questions.

Finally, welcome to your new family.

Keep well,

Peter.

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jon019
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Re: Any help would be great!
Reply #8 - Nov 20th, 2015 at 7:43pm
 
helliknowpain wrote on Nov 20th, 2015 at 4:54pm:
You're in the right place here. Read all you can on this site.
Investigate the D3 info as a preventative, and lots of abortives for you to try too.

Yup......



But I will leave it up to the heavy weights on this site to inform you. Be patient, they will chime in and help you.
I know this because they helped me.  Smiley


Aint no lightweight clusterheads bro  Wink...we all got help along the line...then ya get in the boat and row...just like you're doing  Cool



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« Last Edit: Nov 20th, 2015 at 7:44pm by jon019 »  

The LARGE print giveth....and the small print taketh away.    Tom Waits
 
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jon019
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Re: Any help would be great!
Reply #9 - Nov 20th, 2015 at 8:01pm
 
Hey Ivto...welcome home...you've already heard good stuff...coupla thoughts from my experience:

...when on Verapamil I used to go up to 1000+ mg/dy....everybody is different...it
has been thought that 480 mg/dy is the sweet spot for ch

...caffeine alone can help...but TIMING is critical....don't just chug willy nilly...ONLY to abort
a hit or in anticipation of a hit. Better yet...the cheapest energy drink with 100+ mg caffeine and
1000+ mg taurine (which turbo charges the caffeine...someway somehow)...

....some folks hits triggered by exertion...others find it an abort...the only to tell is by personal experience. I don't know why ANYBODY would tell you to just stop....that's nuts...especially YOGA..
which can have benefits way beyond the physical...mayhaps a peace of mind that any clusterhead will tell you is PRICELESS in the face of the beast....

...your description of the "pain fade" is perfect...it IS almost a rush like a drug...and hard to
describe.... let alone understand....

....my goto of last resort...after verap, energy drink, and BLESSED oxygen didna work has been Zomig nasal spray (5 mg). If the suma spray stops working or is ineffective you might give it a try. Even better for effectiveness...injectable suma.....

Best

Jon
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The LARGE print giveth....and the small print taketh away.    Tom Waits
 
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Batch
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Re: Any help would be great!
Reply #10 - Nov 20th, 2015 at 10:33pm
 
Happy,

Check your PM Inbox.  I left you a PM over 4 hours ago...  The InBox is at the top left part of this window below the date and the CH.com Welcome... 

Click on
1 new message


Take care,

V/R, Batch
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« Last Edit: Nov 20th, 2015 at 10:33pm by Batch »  

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Mike NZ
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Oxygen rocks! D3 too!


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Re: Any help would be great!
Reply #11 - Nov 21st, 2015 at 3:27pm
 
Whilst 240mg a day of verapamil is on the low side for most people, it could be that your personal medical history is dictating this dose, so do work with your doctor on what the best dose is for you. Do not change doses without consulting him / her.

I'll also second the D3 suggestion, Batch will be in touch with his great advice which has helped so many of us here.

As others have mentioned, oxygen is an amazingly good CH abortive. You can read up how we use it at - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register.

For things to avoid, well alcohol is a sure fire trigger for most people in cycle, but not for everyone, however I suspect you know if it is a trigger for you since for most people it brings on a CH rapidly. Not sure what the possible connection is for carbonated drinks, with energy drinks (caffeine / taurine) being beneficial for us, although skipping the rest is a healthy option. With the exercise this can be a trigger for some and not for others, so see what the effect is for you.

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maz
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Re: Any help would be great!
Reply #12 - Nov 22nd, 2015 at 6:28pm
 
Hi, and welcome.

I vote for D3 too, but it's vital that you take the co-factors that go with it, to keep you balanced, or you could do yourself harm.
Hopefully the D3, once in your system, will get you pain free as it has done for many of us.

But, for those sneaky ones that may break through, ask your neuro for the sumatriptan auto injections. Same drug as your nasal spray but 100 times better. I go from full blown 10/10 pain to completely pain free in less than10 minutes.

Keep reading here, and you'll learn all there is to know.
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