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Can I join the family? (Read 1215 times)
Julie65
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Can I join the family?
Apr 3rd, 2012 at 6:06pm
 
Hi.  My name is Julie (47) and I have spent hours and hours trawling this site (which is an absolute godsend) devouring as much information as I possibly can.  I had my first CH bout 4 years ago - one a night every night for 9 nights and then vanished.  I had no treatment for them because no-one knew what they were.  I did see a Neurologist who diagnosed CH but failed to tell me that they WOULD come back or that it was a lifelong condition.  (I'm beginning to think he did the right thing because at least I spent the last 4 years without dread).  This second bout started 5 weeks ago and is ongoing.  I get one every night either before or after I go to bed (preferably before) and sometimes one in the day if I am so tired that I need to sleep (obviously I am trying to avoid that one now I know better)!  I do have a question though.  The pain from the attacks now never fully goes away and I seem to be experiencing low level pains all throughout the day more and more (I read that its called shadowing).  Does this have any significance to where I might be within the cycle or whether its likely to get worse.  I realise now that the only people with any valuable answers will be here and not in the doctors surgery!  Thanks.
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Melissa
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Re: Can I join the family?
Reply #1 - Apr 3rd, 2012 at 10:52pm
 
First of all, welcome to your new extended family Julie.  I'm sorry you had to seek us out, but so glad you found us.

I wish I could answer your question about the shadowing, but it's been 3 years since I've been in cycle and my memory isn't that great.  I am sure though a member will be along with an answer for you.

Hugs!
mel Smiley
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Diseases can be our spiritual flat tires - disruptions in our lives that seem to be disasters at the time but end by redirecting our lives in a meaningful way.  ~Bernie S. Siegel
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Mike NZ
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Re: Can I join the family?
Reply #2 - Apr 4th, 2012 at 3:51am
 
Of course you can join the family, just sorry that you need to.

Keep reading and you'll know more about CH than most neurologists, never mind 95% of GPs.

For shadows, I've never noticed any correlation between where I am, but for others some have patterns, so it seems to vary extensively.
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Tara Ann
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Re: Can I join the family?
Reply #3 - Apr 4th, 2012 at 7:51am
 
Welcome to the family.

Everyone is different.  So very, very different when it comes to pain, shadows, triggers....  But you'll also find many with things in common (this ch crap is confusing lol)

This is your second go 'round.  So time will tell.  And even for the one's that have had CH for yrs. and yrs. things change outta the blue for them too.  So just Make yourself comfy and ask, and talk about whatever comes along.  It's all so random. 
But as for the shadow type pain, I don't think it means one way or another if it will get better or worse for you.   Sorry I don't have any definitive answers.   Undecided

Welcome to the 'funhouse' Cheesy
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Julie65
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Daventry, Northamptonshire, UK
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Re: Can I join the family?
Reply #4 - Apr 4th, 2012 at 8:50am
 
Thank you to Melissa, Mike and Tara Ann for responding.  I suppose I was just hoping it was tapering off but I kinda knew I was kidding myself.  I must say that yesterday I went out and bought a whole load of Red Bull alternatives (the original is way too expensive) and last night I had the mildest headache so far.  I know it might be a coincidence, but its a big one!  Today  I'm starting on the Batch regime.  In for a penny, in for a pound, as they say!!!
Wink Wink
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Guiseppi
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Re: Can I join the family?
Reply #5 - Apr 4th, 2012 at 9:22am
 
Welcome to the board Julie. And you're already a member of the family by virtue of the beast! Wink

Are you working with a headache specialist neuro yet? We have seen the best results from doing so. There are hundreds of headache types, some which mimic CH, and it’s important to eliminate those before arriving at a firm diagnosis. I’ve had CH for 33 years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach:

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

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Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.

Go to the medications section of this board and read the post "123 pain free days and i think I know why." It’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s a long read, worth the time.

For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Visit this site as it has a lot of area specific information for you to help you negotiate the medical system on your side of the world:

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Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com


As to the daily pain in between hits. If I have an attack, and do nohting to treat it, it will last 90-120 minutes, and leave me with lingering pain for days. So if i went through a high cycle with no abortives or prevents, I would be in constant, low level pain, with 2-4 attacks a day. WE call them shadows and they vary a great deal from patient to patient.

I know this may seem a bit overwhelming at first, but continue to everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe
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LadyLuv
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Champaign, IL
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Re: Can I join the family?
Reply #6 - Apr 4th, 2012 at 12:21pm
 
Welcome Julie... you've just became part of one of the greatest group of people God ever made...

The members of this group literately saved my life. They are the only family that I can find one or more of them awake and on this board 24-7; willing to listen, talk, advise and or comfort...

Hate you have to be here, but glad you found this family...

Peace & Blessings
LadyLuv
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Jeannie
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Re: Can I join the family?
Reply #7 - Apr 4th, 2012 at 4:33pm
 
Hi Julie,

Welcome to CH.com.  I too am sorry that you have the need to be here.

As others have said, we are all different.  Even cycles for one person can vary.  Just when you think you know what to expect, it changes. 

I have had times when my pain never completely goes away.  For me, once that nerve gets aggravated, it stays that way until I can go a good period of time without getting hit.  The droopy eye will even remain between attacks.  I can't really say that it was an indication of where I was in the cycle. 

I use the energy shots from Aldi.  I'm not sure if you have an Aldi near you but they are $1 a piece and really, really help me if I catch it in time.

PF wishes,

Jeannie





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Tara Ann
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North Carolina, USA
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Re: Can I join the family?
Reply #8 - Apr 4th, 2012 at 8:20pm
 
Just halfta say ... Guiseppi, said the smartest thing.  Get checked!  And we're here!
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