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How do you know when a new bout will start

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#1 Tue, 27/01/2015 - 20:47
lakefamily
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Last seen: 6 years 4 months ago
Joined: 31/05/2014 - 18:57

How do you know when a new bout will start

Hi,

My teenage son was diagnosed last summer with CH. At the time Professor Goadsby said that the next bout would probably start around the same time (May). I know there is no certainty around that.

Since last Friday my son has had a constant headache similar in location to a CH but pain wise 5 to 6 out of 10 were as the CHs he had last year were 10/10. Today he said his neck and jaw have also started to hurt. The only other symptom he is experiencing is tiredness but that could because the headache is disturbing his sleep. He's generally ok in himself but obviously quite fed up with the constant headache.

Does anyone know if episodic bouts are preceded by these type of constant headache? Is this a warning that CH is about to return.

 

Regards,

Steve

Wed, 28/01/2015 - 10:55
tangerinearmy
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Last seen: 6 years 1 month ago
Joined: 26/02/2014 - 14:34

really sorry that your son has ch.

 

yes the constant headache is what we refer to as shadows and can deffobe be a sign that a bout is about to start.

 

Wed, 28/01/2015 - 11:57
Val
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Last seen: 4 days 20 hours ago
Joined: 21/03/2012 - 15:16

It could also be an indication of another headache condition.  If he hasn't had this constant headache before, suggest you contact neuro and discuss this new symptom, irrespective of whether a bout starts ot not.

Some episodic sufferers get warnings of a bout with low level headaches lasting about the time that an attack would.  Some get the autonomic symptoms, [blocked or runny nose, watering eye, drooping eye etc] but without the full blown pain.  Also suggest that you see GP and have the meds lined up ready for when your son goes into bout, just in case.

There are three peak times in the year for going into cycle, one is in March/April time, another is late October [both times when the seasons and the clocks change] and the final one is around the end of the year when the light levels are at their lowest.

Val.

Fri, 30/01/2015 - 14:40 (Reply to #3)
lakefamily
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Last seen: 6 years 4 months ago
Joined: 31/05/2014 - 18:57

Thanks for the feedback. Went to the GP with my son Wednesday and the GP really didn't know what to say / do. She has all the correspondence from Prof. PG. So we ended up discussing whether or not it could be Hermicrania Continua as my son's symptons seem to match the description in the OUCH guide. We agreed 2 steps

1- Extra strong Ibuprofen

2. Indomethacin if step 1 didn't work after 48 hours.

Step 1 had no impact so he's started the Indomethacin this morning which I'm quite anxious about. Advice from Prof. PG back in July last year was to start him on Indomethacin once CH reappeared in order to rule out Paroxysmal Hermicrania. When he gets home I'll find out if the Indomethacin is working but I don't know how long it takes to work and how long he would need to continue taking it?

I think it's time to get back in touch with Prof. PG.

Sat, 07/03/2015 - 11:06
Phimo
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Last seen: 6 years 1 month ago
Joined: 07/03/2015 - 10:21

I used to get clusters at the end of January and July. They always started without warning and stopped just as suddenly after about six to eight weeks So I thought I could predict my clusters with some accuracy. I also had periods if shadows which alway subsided well in advance of a cluster.

However, my current cluster decided to kick off in mid December and stopped in mid January having totally ruined my Christmas and New Year. For the first time I started getting shadows following the cluster which lasted two weeks and I am now in another cluster much worse than ever before with up to three headaches a day and at least one of those will be a recurring headache e.g. goes away with Oxygen but then comes back up to 4 times after a delay of 1 hour. I am having to ration my Sumatriptan injections so that I always have one for the recurring attack.

So, the point I'm making is that everyone is different, nothing appears to be set in stone but, it does appear that shadows may be an indicator of an impending cluster in some sufferers.

Phimo

Thu, 12/03/2015 - 10:04 (Reply to #5)
Val
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Last seen: 4 days 20 hours ago
Joined: 21/03/2012 - 15:16

Phimo,  have you got oxygen?  Call the helpline to discuss:  01646 651979.

 

Val

Thu, 12/03/2015 - 13:40
ElizabethK
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Last seen: 21 hours 4 min ago
Joined: 26/02/2014 - 14:26

Hi Steve,

I have Hemicrania Continua, I am not a Doc and cannot diagnose or prescribe,  but I can tell you about my experience with HC if it helps?

take care

Liz

Sat, 14/03/2015 - 15:22 (Reply to #7)
Phimo
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Last seen: 6 years 1 month ago
Joined: 07/03/2015 - 10:21

Yes, as I say in my post, oxygen relieves the pain but the beast comes back whereas Sumatriptan seems to stop the recurring headaches.

Phimo

Sun, 15/03/2015 - 23:45
RichardW
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Last seen: 4 years 5 months ago
Joined: 26/02/2014 - 14:35

I get bouts of insomnia two weeks before attacks start. Insomnia starts at the hours the attacks will happen usually 1.30 am to 2.30am. I get shadows during the evening sometimes as well

Also tolerance of alchohol goes right up a couple of weeks before episode starts. Really odd since alcohol a real problem.

Mon, 16/03/2015 - 10:03
Val
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Last seen: 4 days 20 hours ago
Joined: 21/03/2012 - 15:16

Forgive me if you have already tried this, but when you use the oxygen, do you stay on it for an extra five to ten minutes after the attack has gone to really mop it up?

Val.

Mon, 16/03/2015 - 12:51 (Reply to #10)
Phimo
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Last seen: 6 years 1 month ago
Joined: 07/03/2015 - 10:21

Hi Val, I have tried every possible variation of oxygen and even giving an extra 20 - 30 minutes does not stop the recurring headaches. As I said, only the Sumatriptan injection stops them dead.

I am in a strange place at the moment as a week ago I started a short course of steroids I had been given to try after a night consisting of 6 recurring attacks. The headaches stopped immediatelly and stayed away for 3 days and then floored me on the fourth day. Back to Sumatriptan and oxygen until 2 days ago when they disappeared again. As I write I am totally shadow and CH free, Joy!

I am seeing my GP tomorrow about my visit to the Neurology specialist last month and I'm going in hard as a repeat prescription request I put in for Sumatriptan the other day was queried by another Doctor who said I shouldn't be given any more until I had seen a Doctor!. I sorted it out and pointed out to the receptionist that it had taken 3 weeks to get that appintment due to their ridiculous pre-booking system so why make stupid statements?

I had every expectation that the steroids would stave off my CH for up to a fortnight so I did let my Sumatriptan stock run a little low. Lesson learnt! The Neuro I saw made it quite clear that I should order whatever treatment worked as long as it was approved as it would be "unethical" to restrict my drugs for what is considered a critical condition.

Phimo

Mon, 16/03/2015 - 13:07
Harrietjt
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Last seen: 3 years 7 months ago
Joined: 22/10/2014 - 12:47

Have had similar difficulties with GP surgery, long story short, various Drs giving various objections to  prescribing Zomig at the rate my husband needs it and not getting the serious nature of the condition. Went to the Practice Manager and got it thrashed out. No problems any more. 

good luck, Harriet.

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