CH - Do they ever stop?

03 Nov, 2011 - 10:57 am

My neuro told me that CH should go away by the time I'm 40. Is this correct?

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03 Nov, 2011 - 12:15 pm

Hmmm I would have to say no to that jrod.
There are many sufferers on here that are considerably older than that.
I have been getting CHs since I was 22 and I'm 44 now and there is no sign of them abating yet.
I'm really surprised that your neuro told you that.
How long have you been sufering and what meds are you on to help combat you CHs
Chris

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03 Nov, 2011 - 3:47 pm

Jrod,

I have suffered with CH since i was 8 years old now 44, they used to tell me that i would eventually grow out of them. Well i stopped growing when i was about 17 but I still suffer these Dreadfull things.

I am finding that as i get older they are getting worse, this cycle has been going on for 12 months now and the one before went on for about 18 months. Mind you i did have 10 months of pain free time.

So in answer to your question, we can't really say when and if they will ever stop. Your Neuro was very silly in giving you advise on a condition that we dont even know what causes them let alone if you will ever be rid of them.

Matt

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04 Nov, 2011 - 9:22 am

Jrod,
What a load of Neuro's Bullshit. Your Neuro should go back to University or at least have a working knowledge of Google...
Had CH since birth, 35 years old and the CH attacks are still going strong, gets worse every year for me. Average mean age for CH in Men is about 55, average starting age is 35. I just tried to find a case of PERMANENT and confirmed (Diagnosed) CH remission, I could not locate a record of one case anywhere online as yet.
I will keep looking, I would like an answer to this question too.

Sorry Jrod, I call it how I see it.
Welcome to the site.
It is full of people with sore heads... you will have to excuse me, I lack diplomacy some days... I think it might be the insanity from hearing comments like this from Neuros... See what we are still up against??
Ignorance prevails once again in medicine.
Give your Neuro a link to this site and see if they still think CH just "goes away"...

Ben.This post was edited on 04/11/2011 at 9:33 am

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04 Nov, 2011 - 10:12 am

Wow, thanks for the comments. Unfortunately as you could all appreciate my sense of hope has just been shattered. In saying that, it is great to have a network that can all pitch in for a greater cause..

I'm 31 years of age and have been suffering CH since I was 18.. No one could ever give me a diagnosis till I was 25 and me being my stubborn self just used to fight the pain whenever the CH came around.. The first prescription I got was Isoptin which worked for a little while but alike the current situation I find myself in and from what I can read on this site, it looks like there are very few medications that actually cure the condition fully.

The medication I am currently prescribed is Arthrexin (preventative) and Maxalt "when the fire starts raging". Again these worked for one bout at least but this one (which commenced a couple of weeks ago) the CH have occurred every two hours in stages including throughout the night. I am booked into see the Neuro later this month (theres a waiting period unfortunately) so until then I am finding myself setting alarms to wake up to take the Arthrexin during the night and throughout the day to prevent the CH. Unfortunately this still isn't having the desired result. Although I won't, I seriously felt like killing myself the other night it was ridiculous. I've never felt the pain I did for the 3 and half hours it went on for..

Whats worse is that I'm not fit to take out day-to-day tasks during the day. I study full time and work so its been difficult. In saying all of this, I want to keep positive and work through it as best I can. Your help and experience will contribute a lot to this.

Thanks.

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04 Nov, 2011 - 12:17 pm

Hi Jrod ,
What area are you from ... there may be another option for you to see rather than waiting weeks for an appointment with your neuro.
It would be wise to get yourself a GP that you can educate about what you have and what treatments are available.
there is heaps of iformation on this web site and if you look at the "What they are" tab at the top of thins page it is worth printing this and taking it with you and maybe highlight some of the parts fron the section that says "How is a sufferer affected"
There are some really powerful words in this section of the web site.
The other thing is you need to educate most people about what and how severe CHs are .... Approach all medical people with a healthy dose scepticism in relation to their actual knowledge into this condition.
Unfortunaltely you need to be in control because most are ignorant or ill informed because of the rareness of this condition.
have you tired any other meds such as imigran nasal spays or injections or perhaps verapamil or even (when all else fails) prednisolone.
I really hope you can find some relief soon but you have to be in control and knowledge is power!!
Cheers Chris

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05 Nov, 2011 - 8:09 am

Jrod,
Sorry for the reply. I just get very frustrated on others behalf when they come up against medical ignorance. This Neuro seems to have the wrong idea.
Arthrexin, otherwise known as Indomethacin or Indocid is used to correctly diagnose CH or rule it out. It is a blunt instrument approach, but worth a try I admit. CH generally does not respond to Indomethacin (there are exceptions, but very few), where many other headache conditions do respond directly to Indomethacin. There are "Indomethacin responsive" headache conditions. CH is generally not one of them. I used it to confirm my CH diagnoses when the drug failed to treat my CH.
All part of the diagnostic process for me...

I am suspicious that your Neuro may have got it wrong and you may possibly have a different headache condition, maybe not CH after all. (good news!)
One thing is for sure, the stuff will burn a hole through your gut in the long term!

Here are some examples of headaches that respond to Indomethacin.

http://ihs-classification.org/en/02_klassifikation/02_teil1/03.02.0
0_cluster.html

Paroxysmal hemicrania
Description:

Attacks with similar characteristics of pain and associated symptoms and signs to those of cluster headache, but they are shorter-lasting, more frequent, occur more commonly in females and respond absolutely to indomethacin.


http://ihs-classification.org/en/02_klassifikation/02_teil1/04.07.0
0_other.html

Hemicrania continua
Description:

Persistent strictly unilateral headache responsive to indomethacin.

By all means, have a look at the diagnostic criteria at the IHS site and see what best matches your reported symptoms. 3+ hours in duration of attacks is leaning toward the migraneous end of the spectrum, maybe some longer acting triptans would work as abortives. Isoptin (Verapamil) also has a cousin called Diltiazem, with which I had some degree of success as a preventive. I am surpirised you are not on Deseril or an anti-convulsant drug as a preventive. Indomethacin is hard to sustain as a preventive, it has a long and bad record of causing gastrointestinal complications.

If Indomethacin works for you at all, maybe you have a different headache condition to CH. Either way, with a Neuro that thinks CH will mysteriously vanish by the age of 40, I would be seeking a second opinion and a third. In the meantime we can only hope that the Global year against headache campaign for 2011 helps to better educate Neuros and other medical staff on all things headache.

Good luck with it.
I hope you dial right in on it, because you may be lucky enough to find the right drug or treatment plan that works for you, there are so many options now. Keep that sense of hope going!
If it is CH there is no "cure" yet, but we are getting a lot better at managing the condition every year.
I reckon you might crack this one with the right specialist help mate.

Cheers, Ben.This post was edited on 05/11/2011 at 8:18 am

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15 Nov, 2011 - 6:26 pm

Gidday jrod,
No I don't think they stop at 40,mine started at 28 years of age and now I'm 42 there's no sign of mine stopping. Sorry to say that I have read that they do just stop out of blue longing for that day myself. Good luck and hang in there.

Wrighty

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