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        Supporter's Corner >> Supporter's Corner >> Hello
        
(Message started by: penelope on Mar 23^rd, 2006, 8:41am)

Title: Hello
Post by penelope on Mar 23^rd, 2006, 8:41am

Hello,
I am new to this site and I support my husband with his CH.
Over the years they have gone from an attack lasting 6 weeks every 18 months to attacks lasting 3 months but with a 3 year remission. The last attack was 20 months ago so I'm not sure when the next ones will come.
I live in absolute dread of these occuring. We manage to get through them somehow but its a lonely place when friends and relatives can not relate to whats going on.

Penelope

Title: Re: Hello
Post by fireball on Mar 23^rd, 2006, 9:58am

Hi Penelope-
Trust me, you will NOT be lonely here. My husband has been a sufferer for 8 years and is chronic. This cycle has been going on since Nov. 2004. We have explained and re-explained to family and friends, and although they try to be empathetic, they really just don't get it. I felt very, very alone too until I came here and started reading and getting involved.
The people involved with this site have a lot of experience either as a supporter or one w/ CH. You will get a lot of good advice, and some much needed support, anytime you need it.
Best wishes,
Kathi

Title: Re: Hello
Post by penelope on Mar 23^rd, 2006, 10:17am

Thankyou for your reply kathi,

Does your husband get any respite during these attacks? Its an awful long time to suffer.

I guess I should count my blessings that my husband has a 2-3 year gap between his bouts. I didn't realise others had it worse than this.

Thinking of you.

Penelope.

Title: Re: Hello
Post by mrs mac on Mar 23^rd, 2006, 1:06pm

hi penelope

my hubby also suffers CH and is chronic

i promise you that you will never feel alone again, the guys on this site are terrific, we are all here for each other supporters and sufferers alike

please ask any questions you like, we will always try and answer them for you

take care

sandra xxxx

Title: Re: Hello
Post by penelope on Mar 24^th, 2006, 3:43am

Thankyou for your welcomes.
I hope I can help others too.

Penelope

Title: Re: Hello
Post by LeLimey on Mar 24^th, 2006, 4:23am

A big hello from me too Penelope!
I'm a sufferer but I'm also a supporter asI have a child with CH too so I get to see both sides of the coin.
I can tell you now for nothing its alot "easier" to get hit than to see someone you love in such pain. Make no mistake, I dread my hits and I hate it but I've seen alot of my friends here getting hit as well as my son and it IS harder.
We'll be here for you anytime you need to vent as well as ask questions and also for your husband too, its surprising how much easier it is to cope when you know you aren't alone and that others understand.
Have you found OUCH UK yet? Thats a UK charity set up for the sufferers and supporters of CH. I'll give you a link, there's a support board where you can ask questions a helpline manned by volunteers who all have CH and if you join, there is a member's board too!

http://www.clusterheadaches.org.uk/home/index.cfm?address=../home/txt_welcome.cfm&added=Dec2001&code=AD

What meds has your husband tried? Has he ever tried Oxygen? I have to say that's about the best stuff for aborting a hit I've ever used and I love it.
Take care of you too okay?
Helen

Title: Re: Hello
Post by penelope on Mar 24^th, 2006, 4:48am

Thanks for the link Helen, I'll have a good look on there.

Last time my husband had a bout of CH he was prescribed..... wait for it......

Diclofenac 3 x per day
Prednisolone (steroids)
Ranitidine (to protect stomach from steroids)
Eletriptan
Verapamil
and oh.. take a zomig if you need it.

This was at a private neurologist clinic.
We saw this guy four times during the last cycle at a cost of £1000.00.
We could have seen him on NHS but waiting time 6 months.
We asked about 02. He baulked at the idea and said no way would a uk doctor prescribe it because it would be too costly.

My husband is self employed and we are not in a financial position to go private each time for advice.
As usual in the UK its all about money.

Sorry i've started to rant!

Penelope x

Title: Re: Hello
Post by penelope on Mar 24^th, 2006, 4:53am

Helen,
I've just realised I was so caught up in my own situation, I didn't ask about your child. How old is He/she. How do you cope? I can't think of anything more distressing than seeing a child in pain.

penelope

Title: Re: Hello
Post by LeLimey on Mar 24^th, 2006, 6:39am

Penelope you saw a neuro who wasn't worth your money.

If he had spent 30 seconds looking in hisBritish National Formulary he would have seen the ONLY licensed med for CH is Sumatriptan Injections or Imigran. This is fearfully expensive so doctors do try and sneak out of prescribing it but it actually states in their own bible that to withold on grunds of costs is unethical.

It also states in the BNF that Oxygen at a flow rate of 15 LPM through a non re breather mask is good (and VERY cheap! Probably the cheapest of all the treatments we use)

Verapamil is a very common med for ch'ers and it does work but it takes a couple of weeks to kick in which is why I'm assuming you had the pred, that's usually used to give a breathing space while waiting for the verap to work. While on verap you should have ECG's as it is a blood pressure med and it needs to be checked on. You should also have one after each increase in dose.

Diclofenac.. you'd have been better off giving him a crash helmet to protect his head whilst he was banging it! Its the wrong sort of pain killer. We need vaso constrictors. In a hit the blood vessels swell by up to ten times their normal size and we need meds which will bring them back to normal asap. It doesn't matter how "strong" a painkiller is if that isn't how it works.

Eletriptan is another triptan which does work in the same way as imigran but a hell of a lot slower and hence worthless for CH, its a migraine med. Imigran tablets are no good too as they take up to two hours to kick in and by then the hit is over. They have a short half life of about 2 hours as well so are totally worthless.

Frovatriptan is worth a try. Yet again it takes about 2 hours to kick in BUT.. and here's the good bit! It has a half life of up to 26 hours which means no more hits for the rest of the day. You can take one every twelve hours which means effectively you could prevent any further hits. If his hits are at regular(ish) times its well worth a try. IE if he got hit at midnight, take one at about 9:30pm ad you would be safe. The downside, as with all triptans, is that they can cause hits to come back stronger when you do get hit and also they are not considered safe for anyone with heart problems.

I would suggest you go to your GP, ask for a referral to a headache specialist neuro and ask about imigran injections and O2. When they see that Imigrain is the only licensed med and how expensive it is (about £30 per injection and you can use up to 2 a day!) they will only be too delighted to let your poor hubby try the much, MUCH cheaper Oxygen! (Me sneaky? Umm.. YUP!)

One very very important point. You cannot ever mix triptans within 24 hours of each other. You must leave a 24 hour gap between using imigran for instance and taking a frova. (Imigran is called Imitrex on this site, which is why OUCH UK is better to look at for meds for us as it uses the UK names. Doctors tend to be a bit funny about stuff like that.. you know.. "OH you found this information on the INTERNET did you?!"

I hope all this helps a bit, please keep asking because all I want is to see you get the right help for your husband but for you too. It makes you feel so much better when you know he has the right meds.

My son Jasper is four now and he is in his second cycle. He's a great kid, its tough but he is so stoic, he calls the beast the custard monster (we have custard headaches don't you know?! Well.. you would if you were four!) and he uses o2 to blow the monster out his nose. His theory is that when I cook dinners he doesn't like (you may NOT want to tell your husband this, don't go giving him any ideas!) the custard monster gets into his mouth and works his way up into Jasper's "brayun" and starts eating it. So he has to blow him out of his nose with his "magic mask"!!
Its tough but to be honest, I do my best not to think about it, I just deal with it. If I actually stop and think I go to pieces. We get by though, there isn't really an option at any age :-/

Title: Re: Hello
Post by penelope on Mar 24^th, 2006, 6:57am

Thanks for your advice. It will help us greatly.
My husband has had imigran injections and nasal spray in the past but did not get relief with these. We will definately persue the oxygen next time.

Your son sounds like a wonderful little boy.

I think adults can learn alot from how children deal with things.

Thankyou again for your support.

Penelope