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New on here and have complicated SUNCT

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#1 Sat, 18/04/2015 - 23:56
Tonythetiger
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Last seen: 7 years 7 months ago
Joined: 17/04/2015 - 23:39

New on here and have complicated SUNCT

Hi, I have posted a much shorter version of this post on the Facebook page but thought I'd put it on here too.  Im Tony, I'm 35, I have been getting the headaches everyday for about a year, and the amount varies but averages about 20 a day.  On a good day I might just have 3-4, but the worst I've had was more like 70 in a day.  I have been doing a headache diary for the past month, and it's been shocking how many I do actually get!  I knew I got a lot before doing the diary, but now I write them down, and can see at a glance how many I have each day.
 I went to see my GP 9 months ago and was told that I may be suffering from cluster headaches.  I got referred to a neurologist, and saw a consultant a few months after.  He told me then that I have sunct which is apparently quite rare.  He referred me to a more specialist neurologist!   I saw the specialist neuro consultant a couple days ago, and was told that he had discussed my case history with other neuro consultants and they've decided I have a 'super rare' version of chronic sunct, as it is complicated by another 'rare' condition I have called Klinefelters syndrome, which affects hormones and testosterone production.  He said that Sunct is likely to cause testosterone and other hormones and chemical levels to drop when I have an attack, so this compounds with the already low levels caused by klinefelters and can affect all sorts of things.
He actually said he knows of just 12 cases.  When I asked if that was in the UK, the reply was... 'No, worldwide'.

Sun, 19/04/2015 - 00:00
Tonythetiger
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Joined: 17/04/2015 - 23:39

bit of a long shot, but  If there's anyone else here (of the 11 other people) who have this condition I'd be really interested to hear of your experience and treatments.  Or if anyone can point me to any specific info about sunct with klinefelters, that'd be great too.  I have googled and tried the medical journal searches but come up with nothing. I'm feeling pretty isolated.  
He has booked me in for MRI for Wednesday.  The headaches can be unbearable and I've tried indomethacin and lamotrigine with no effect.  I was told at my neuro appointment that I need to gradually build up my lamotrigine dose by 25mg a week until it's doubled, and try that for 2 months, but he's mentioned all the other possibilities and it's all a bit overwhelming tbh.  He said if the lamotrigine doesn't work I can try carbamazepine for 2 months, and if that doesn't work  gabapentin for 2 months, then if that fails then a treatment that is usually used to improve egg production in women.  I can't remember what that was called :-/,  
He then went on to tell me about a procedure where you have a needle put in the roof of your mouth??!!  At that point I was pretty overwhelmed and I didn't retain much of the information.  Does anyone know what the needle in the roof of the mouth thing is?  I think he said it goes up and blocks a nerve behind your eye?  Doesn't sound nice at all!!! 
And the last resort of surgery where something is implanted in the back of your head,... Which he said, 'can be risky', but that would have to be done in London.  Anyone have any more info on this ???
Not feeling great right now.  A lot of what he said went in one ear and out the other as it was too much to comprehend.  That and the fact I forget stuff easily since the headaches started. 
 I really need to find somewhere I can find out about benefits as Im off work yet again and only getting SSP.  I've never claimed any benefits before so it's all very confusing to me.  I have a mortgage and bills to pay and almost at my overdraft limit so really stressed which doesn't help with the headaches.  Is there any info anywhere on what you can claim for?  I have emailed neurosupport and they said to contact CAB.  I have also just emailed rights@ouch.org.  And I am having some difficulty booking a CAB appointment as the CAB near me is only open 3 hours a week! 
Anyway, I've been trawling the internet trying to find somewhere I can talk to people who understand, so it's nice to have found this website.
sorry for all the questions!

Mon, 20/04/2015 - 14:05 (Reply to #2)
Dorothy Trustee
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Last seen: 18 hours 29 min ago
Joined: 19/02/2014 - 10:16

Hi Tony,

Sounds like you would really benefit from a chat to someone on the helpline 01646 651 979.  Leave your details and number (landline if possible) and they'll ring you back. Sorry for the brevity, my keyboard playing up.

Dorothy

Dorothy (Trustee)

Mon, 20/04/2015 - 18:27
Harrietjt
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Last seen: 6 years 3 months ago
Joined: 22/10/2014 - 12:47

Hello Tony,

You have so much to deal with, not surprising you couldn't take everything in. I don't have headaches myself, my husband has had CCH for 6 years though. These severe headache syndromes are very isolating and disabling, the system is hard to deal with, and it is not easy to know where to start when your head and thinking are repeatedly under attack.

Glad you found OUCH. I think you will find that with their support you will work you way through everything and not feel so overwhelmed in the end.

My husband receives ESA (support group) and PIP. These were recently awarded after a big fight. It was not easy, but we got there and learnt many things along the way. I am happy to share our experience with you if you would like. I can certainly give you some useful pointers as to how to approach it.

Harriet.

Tue, 21/04/2015 - 08:52
Tonythetiger
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Last seen: 7 years 7 months ago
Joined: 17/04/2015 - 23:39

Hi Dorothy and Harriet.  Thanks for your replies.  I am planning to go to citizens advice next Monday (the only day it's open!) and will see how that goes, If it doesn't help, I'll call the helpline.

i would be very interested to hear of your husbands experiences thanks Harriet.  I hope he is having some pain free time.

 

Tue, 21/04/2015 - 11:04
CBailey
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Last seen: 6 years 3 months ago
Joined: 26/02/2014 - 15:13

Hi Tony, 
Glad you found us here. I hope the CAB is helpful for you. Give the helpline a ring too :) 

I take lamotrigine for SUNA at the moment. How are you finding it? The block your doctor was talking about maybe a sphenopalatine block - from what I have heard, they can be uncomfortable while being performed but effective. I believe they are a relatively new type of nerve block.

Arise and be all that you dreamed.

Thu, 23/04/2015 - 00:18
Tonythetiger
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Last seen: 7 years 7 months ago
Joined: 17/04/2015 - 23:39

Hi Chloe, I'm going to give the CAB a try first and see what advice they can give.  Then if they can't give much help, I'll call the helpline.

The lamotrigine hasn't done anything as yet.  Up until last Thursday, I was on 75mg but have now been told by the neurologist to increased he dose every week by 25mg till I am on 300mg a day.  150mg twice a day.

he did say that of the other 11 known cases that have sunct and Klinefelter syndrome only 4 have had relief from their symptoms with medication. 

I looked into the nerve block, and it IS a sphenopalatine block.  Apparently it can be done through the nose as well but then euro consultant definitely explained it as going up through the roof of my mouth :-/.

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