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9.5 years goes too fast - here's my story (Read 1270 times)
ronan76
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9.5 years goes too fast - here's my story
Jun 29th, 2017 at 6:33am
 
Hi all,

I just want to post some information as it may help somebody who suffers from episodic cluster headaches or help CH research. I also just wanted to share my CH story.

In Jan 2008 I posted in this forum , it was my second bout of CH .. the first bout I got was in 2001. I didn’t know what was happening and by the time I’d figured it out, got an MRI and got diagnosed my episode was coming to an end.

This forum however helped me a lot in 2008 and if you search the old forum you can see my post from Jan 2008.
I actually read it to compare it to this episode and it’s almost a carbon copy.

This recent episode started on June 4th  - The Shadows appeared… The fear kicked in when I realised what was happening. AFTER 9.5 years... but why ?

From previous experience and previous episodes I knew that if it followed pattern it would last 4 weeks intensifying and increasing in frequency over the episode. At first shadows, a couple of 5/6 out of tens… then they got more painful and came at the same time at night.. yada yada yada… you've heard this one before !

From Wednesday 21st to Tuesday 27th was horrible as they were coming at me every 4-6 hours … and of course I was only able to take 2 shots of sumitriptan in the 24hour period…ugggghhhh. I assumed it was the peak. Tuesday morning was awful.. no meds and everytime it went away i fell asleep and was woken up with another one.

Today is the 29th June. Up until 7am this morning I was 52 hours CH free after an intense 22/23 days.

The CH at 7am this morning was about a 3 or 4/10 and didn’t require painkillers but I thought I was free…. I’m hoping its just the end of the cycle.I think it probably is the end of the cycle but of course it has not let me relax just yet.

A few points I wanted to share with people which may or may not be of use. I realize that on a scale of CH sufferers I am probably one of the lucky ones
with the gap I get between episodes however I’m hoping some of the info and questions below can help someone.

1.      I had 7 years between my first and second episode and 9.5 between second and third. No logic ! but I’m praying for another 7 years. Has anyone experienced a significant gap like this ?

2.      Sumitriptan ends all pain in 15-20 minutes for me. Side effects include stiffness in my joints / lethargic.

3.      I take Difene - (Diclofenac Sodium) – I find this useful if taken for a period of weeks. For me it randomizes when the attacks occur. For example I was getting one at 1am every night but after 4 days of difene my attacks used to kick in at 6am and some of them seemed to abort before they started. I could be wrong but feel DIFENE helps take the edge off a little . Note: I haven’t tried Verapamil.

4.      The Gym helps me feel normal during an episode although can bring on a CH shortly after it when relaxed…

5.      A cold cloth on the head helps (a little)

6.      Yoga stretches and breathing helps if you want to try and avoid meds or see how bad it’s gonna get. Keep active get outdoors, drink LOTS of water.

7.      Avoid alcohol – I didn’t touch it for 4 weeks. (good for the liver !)

Question :

I know coffee and energy drinks can help at the first signs but is coffee a trigger? I kinda think it is… and cut down a lot over my episode, at least for me.

2nd Question - Are there many non smokers on here? Or people who have never smoked ?

3rd Question - Does anybody think that CH is related to stress or depression ? 

Finally, on a positive... between my 2nd and 3rd episode I travelled around the world with my wife and had 3 babies. The eldest is almost 7. One thing CH has thought me is that life is precious and health is everything. Every day you feel healthy is a wonderful day.
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« Last Edit: Jun 29th, 2017 at 6:37am by ronan76 »  
 
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Mike NZ
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Re: 9.5 years goes too fast - here's my story
Reply #1 - Jun 29th, 2017 at 5:11pm
 
ronan76 wrote on Jun 29th, 2017 at 6:33am:
Question :

I know coffee and energy drinks can help at the first signs but is coffee a trigger? I kinda think it is… and cut down a lot over my episode, at least for me.

2nd Question - Are there many non smokers on here? Or people who have never smoked ?

3rd Question - Does anybody think that CH is related to stress or depression ? 

Finally, on a positive... between my 2nd and 3rd episode I travelled around the world with my wife and had 3 babies. The eldest is almost 7. One thing CH has thought me is that life is precious and health is everything. Every day you feel healthy is a wonderful day.


Coffee / caffeine isn't something that is normally counted as a CH trigger, although it can be for other headache types like migraine. But with CH seeing a lot of variation it could be for you.

Whilst the CH population includes more people who smoke than non-smokers, there are plenty of people who don't / never smoked who get CH (myself included in the never group).

With stress, some people get more CHs at high stress, others low stress and others on transitions between the two. CH will also undoubtedly cause stress in its own right and like any other chronic pain condition can be linked to an increased risk of depression.

A 7 year gap is pretty good and there have been occasional people posting of similar ones, but for most episodic people the frequency is a lot lower.

You mentioned sumatriptan taking 15-20 minutes. Are you using tablets as the injections / nasal spray takes about 5 minutes or less, which is a significant improvement.

I don't recall anyone else using diclofenac as a preventive, but I suspect that verapamil or vitamin D3 will be much more effective.

With the gym linked CHs, some people find that getting too hot can trigger a CH, so that may be a factor and this is backed up by you finding that a cold cloth helps.

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Peter510
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Re: 9.5 years goes too fast - here's my story
Reply #2 - Jun 29th, 2017 at 5:56pm
 
Ronan,

Check your PM box.

Peter.
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jon019
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Re: 9.5 years goes too fast - here's my story
Reply #3 - Jun 29th, 2017 at 7:30pm
 
Hi ronan,

I agree with Mike's post and can only add that in my experience caffeine WAS a trigger if consumed outside of a cluster hit or possibly in excess amount (therefore no morning coffee). Basically... I believe that abstinence while in cycle and prior to a hit allows for a much better effect when consumed  as a large dosage abortive (as in an energy drink). The body has not acclimated and the reaction is more effective.

The fact that you ask the question indicates you believe some version of same...and clusterheads are pretty good at reading their bodies. But note also...I have expressed this opinion many times before and no one has commented....so if true we're likely in a small group......

Best

Jon
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« Last Edit: Jun 29th, 2017 at 7:34pm by jon019 »  

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