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#1 Mon, 15/06/2015 - 23:41
Gerardine
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Last seen: 1 year 7 months ago
Joined: 24/04/2015 - 13:15

Hello

Hello everyone, I am new here. I am very newly diagnosed with CCH after suffering for 15 years with severe violent chronic head/eye pain (inc. jaw/face etc). This started as a consequence of five years of unnecessary negligent dental treatment on my jaw (along with developing fibromyalgia) and I believed these were violent migraines. I was left feeling that no one else could possibly suffer such severe chronic head/eye pain, and finally pushed to see a neurologist. I currently cannot try any of the specific preventative drug treatments that may help due to IVF process, so my pain is not well managed and work/masters on hold etc. Recently had greater occipital nerve block which has increased pain so far but told it takes 1 to 6 weeks to work if it works, so hoping it will improve or at least settle back. I went to the Ouch conference in Liverpool, which was my first time, and met some of you. It was really great to meet the other sufferers I did. The diagnosis still feels overwhelming currently, but now knowing that I’m not the only one will help in time. (have posted brief version on Face book too) Look forward to speaking with you… Gerardine x

Gerardine 

Once more into the Fray, Live and die on this day

Wed, 01/07/2015 - 22:59
Nero
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Last seen: 4 years 6 months ago
Joined: 01/07/2015 - 22:16

A bit like Greendendroid, I am also a new joiner.  Was diagnosed with CPH 3 years ago after suffering severe onoing one sided head pain following a fall on ice.  Very rare according to the Neurologist, but so glad someone was able to diagnose it.  Also suffer neuralgic pain on same side of face. I believe my condition is described as Indomethacin sensitive CPH.  Over this time I kept looking for an up to date source of information on CPH but found nothing. Someone recently suggested I look for forums on the subject, and luckily I found OUCH. I've recently had to stop work in a senior position due to my various cognitive difficulties - after 30 years of working my way up I am finding this so hard.  Looking for someone who knows what CPH feels like (as not many have even heard of it -inc some in the medical profession) - and what people have maybe found useful when bouts occur despite medication. 

Here's hoping this arrives.

Nero

 

Nero

Mon, 06/07/2015 - 20:10
Lorraine
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Last seen: 1 year 2 months ago
Joined: 24/06/2015 - 12:33

Hello. I am also a member of the club now (suspected sunct or suna) following dental treatment. I am awaiting diagnosis from neurologist but OralSurgery Prof is pretty sure. It seems as though trauma seems to trigger this in susceptible people. I have been taking Lyrica and Amitriptiline for a year now but I am starting to have nerve pain elsewhere so hoping that it isn't MS. It is proving to be a very tough journey for me but it is good to know other people know what it feels like. I have pain that shoots up towards my eye which waters all the time. And I have a permanent feeling as though I have walked into a door on that side and a continuous buzzing sound in my head. The shooting pain is quite well controlled by the drugs but I get dizzy and don't want to take them long term. Any advice/support from similar sufferers would be welcome :)

Mon, 06/07/2015 - 22:45
Nero
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Last seen: 4 years 6 months ago
Joined: 01/07/2015 - 22:16

Lorraine,

have been told by one neurologist that my symptoms could be Sunct in his opinion.  very similarly to PH just differences in duration of severe pain.  

I have been on Indomethacin for 3 years and this helped from day one, albeit never closed out the pain.  I tried Amitripline and Nortriptiline in the early days to no effect - just made me really sleepy & out of it.

I have been taking low dose Lyrica recently for neuralgic facial pain (last 2 weeks as per GP suggestion) - that has been there throughout the CPH I have - and I think I am seeing some improvement.  The CPH and neuralgia need to be treated independently apparently.

No medical background but hope this might help.

Nero

Wed, 08/07/2015 - 16:44 (Reply to #4)
Lorraine
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Last seen: 1 year 2 months ago
Joined: 24/06/2015 - 12:33

Thank you Nero. I have been told that there may be no 'fix' which was quite a shock. But I appreciated GP's honesty. Will discuss medication with her. Lyrica works well for me but had to go up from 150mg to max.600mg per day to control pain. I could not do without 20mg Amitriptiline at night to get enough sleep. Do you have 'hit in face' feeling too? Still can't quite believe this might be it for life :tired:

Sat, 25/07/2015 - 23:28 (Reply to #5)
Nero
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Last seen: 4 years 6 months ago
Joined: 01/07/2015 - 22:16

Lorraine,

yes I have a one sided facial pain also.  Ranges from a dull ache to throbbing pain that does not want to budge. This pain is separate & different from the severe pain.  This pain never really goes, but the combination of indomethacin & pregabalin keep it at bay.

Like you, I've been told that after 3.5years, my condition is unlikely to improve.  That said, there is always hope

Nero

Sun, 26/07/2015 - 08:43
duetto
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Last seen: 8 years 6 days ago
Joined: 26/02/2014 - 14:54

since wearing a dental night guard, it has helped with face pain.

Wed, 29/07/2015 - 15:43 (Reply to #7)
Lorraine
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Last seen: 1 year 2 months ago
Joined: 24/06/2015 - 12:33

Thanks for that. I have a neurologist appt at King's September so should get more info then. Yes, always hope and better appreciation of all the good stuff. I have just started acupuncture so will keep you posted on how that works too. :)

Thu, 30/07/2015 - 07:24
duetto
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Last seen: 8 years 6 days ago
Joined: 26/02/2014 - 14:54

I found acupuncture could stop a cluster once it starts but could not prevent it, the suction jars they put on your back are very relaxing, needles went in hands feet and back.

found the acupucture ear things very painful.

Thu, 30/07/2015 - 16:53
greatoak
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Last seen: 8 years 11 months ago
Joined: 28/07/2015 - 13:35

I am on gabapentin for overall prevention of CH and sumatriptan if I feel a headache coming on.

Saw my neurologist recently and am now on indicatin  as well.

Fri, 31/07/2015 - 08:31
Phil
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Last seen: 1 week 1 day ago
Joined: 26/02/2014 - 17:02

Sumatriptan injections?
Gastroparesis (slowed intestinal absorption) is common during headache disorders.Tablets are pretty worthless.

Fri, 31/07/2015 - 17:36
greatoak
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Last seen: 8 years 11 months ago
Joined: 28/07/2015 - 13:35

No sumatriptan tablets and I meant to say Indometacin.

 

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