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        Cluster Headache Help and Support >> Cluster Headache Specific >> Another newbie.
        
(Message started by: chrisb on Dec 11^th, 2006, 11:15am)

Title: Another newbie.
Post by chrisb on Dec 11^th, 2006, 11:15am

Hello,

On 2 December I got a new pair of glasses, they are very strong in the right eye, but are great now that I can see. 4 days after I got them I started having headaches, I thought they were because I was getting used to the glasses. Over the following weekend they got worse, the pain in my right eye and teeth on the upperside of my mouth to the right felt like they were severely damaged – then the pain started in my right temple as if it had been shot with a gun at close range. I went to the doctors after a night of hell from 8pm to 2am in which I was having to run to the bathroom and fill the sink with freezing cold water to dunk my head into.

I went back to the opticians who seemed concerned at the pain I was receiving but did think that any pain in my head would be getting use to the new strong prescription of my glasses. Another two horrible nights and I gave up with the glasses and went to my doctor. After telling her the pain she said I was suffering from ‘Cluster Headaches’ something I had never heard of before. She told me some people suffer from them at the same time each year and some would not experience the pain again for several years. She gave me a course of extremely strong painkillers and advised that I come back next week to get a set of injections which I would administer myself should I get a strong headache again.

She said that while my glasses were not the course of my headache they could have been the trigger and while I was on strong painkillers I should still try and wear them.

I had a good weekend, although the pain was there just bearable. I have been taking the medication that she gave me which simply knocks me out and makes me very drowsy and have heavy sleep, so that I find it hard to wake up (I am a suffering insomniac so I find this most bazaar).

Back at work today and I found your site, I’ve started to drink the water recommended which I am not finding too difficult as I do not drink hot drinks. I have had a severe headache this morning (7.30am to 9.30am) but seem to be ok, although the nights are normally the worst.

Somethings I’d like to know are:

i. as a heavy binge drinker I drink a lot during the weekend – how will being a CH sufferer effect my drinking?
ii. What should I do about my glasses – persevere and wear them or take them back (I have a full guarantee on them)
iii. I am not liking the strong painkillers I am on (co-codamol) as they don’t really change the pain just make me sleep, but do find that taking strong Nurefen Plus tablets every 4 hours means I do not get an ‘attack’ as long as I keep taking them at the correct times. The problem is this over the counter tablet (I’m from the UK) has a strict warning on them that you should not take them for more than 3 days running as they are addictive, anyone have a similar reaction/feeling about these?
iv. Finally the stupid question, when will I know if I’m an episodic suffered and that my cycle is over. Even on days I do not have an attack I get a dull/lingering pain in my eye/head/ear as if I know I will get one soon.

Thank you for your help, this web site has been very informative to my family and myself.

Title: Re: Another newbie.
Post by BigCoffinHunter on Dec 11^th, 2006, 11:39am

i While you are in cycle you will not be able to drink. Just deal with it, I am the same way. You'll probably try it anyway (I know I did), and you'll learn your lesson quick.

ii I'd probably wear your glasses, you don't need eyestrain in addition to the CH. The problem is your hypothalamus, not your eyes.

iii Narcotic pain killers are worthless, you need something like Verapamil for a preventative and an injectable or nasal spray triptan for getting rid of the breakthroughs. Try melatonin in high (9mg) doses at night. A steroid like prednisone or dexamethasone will give you a break until the preventative reaches therapeutic levels.

Good luck, and feel free to keep asking questions.

iv I know my cycle is over when I haven't gotten a night hit in several days, and my cycles last 2 months.

Title: Re: Another newbie.
Post by LeLimey on Dec 11^th, 2006, 11:46am

Hi Chris, I'm in Notts too, Bingham to be precise!

Lets see what we can do to help you.

First and foremost you need a referral to a neurologist. I can personally recommend Dr Evangelou at QMC, he's my neuro and I wouldn't change for love nor money. You need an MRI to rule out anything more insidious (first rule of CH diagnosis)

What meds has your doctor given you so far? I'm assuming its Imigran injections but I've learned enough to not second guess doctors. ::)

As this is your first cycle whether alcohol will affect you or not is up for debate. The chances are high that it WILL but the acid test will be have a drink and see what happens! Personally I wouldn't risk it but I won't tell you what to do.

OTC painkillers or any pain killers for that matter won't help as they work in the wrong way.
We need vaso constrictors. In a hit the blood vessels on the affected side of your bonce swell by up to 20x their normal size which is why they hurt so much. we need to reduce those veins ASAP to make the pain go away.

Ask your doctor about Oxygen, for me its the best abortive possible. You need it at 15 LPM through a non rebreather mask and your doctor will need to fill in a HOOF form for it to be delivered direct to your door by Air Products.

Your glasses won't affect your CH one way or another. wear them if they help your vision.

Try Red Bull or generic equivalents such as Asda's own (Blue Charge) They all taste equally as revolting but if taken early enough in a hit will knock it out. Caffeine is a vaso constrictor and red bull (etc) also contain taurine which intensifies the effect of the caffeine.

There is a lot to take in all at once. Please ask as many questions as you like, I for one will do all I can to help!
Helen

Title: Re: Another newbie.
Post by Sandy_C on Dec 11^th, 2006, 1:22pm

Hi Chris, and welcome. You've come to the right place to gather information and learn about CH. There is more combined knowledge and experience on these boards than any doctor will ever have.

Chris, when I first found this site, I was told that the only stupid question is the one you didn't ask. I have taken that to heart, because I've asked many, many stupid questions, but someone always answered them for me.

Ask away - anything.

Sandy

Title: Re: Another newbie.
Post by chrisb on Dec 11^th, 2006, 3:44pm

Thank's for all the replies.

I am definatly going to give the glasses another go, although I have a feeling I will now forever associate wearing them with the extreme pain i now get.

I do not know the name of hte injections my Doctor is suggesting I take, although I will be seeing her on Wednesday so will know more then and hopefully see what else she says about CH.

I started to get a headache at about 4pm today and around half an hour later drank some Red Bull - I still had a pretty bad headache (not the worst but not pleasant) - I managed to use some Tiger Balm to slightly releive the pain.

How much Caffeine should i be taking and when?

Also with regards to driving, at the moment I am not doing so becasue this medication I"m taking makes me too drowsy, but how to others deal wtih it?

I really have so much respect for people who have to go through this on a frequent basis.

Title: Re: Another newbie.
Post by mathieulives on Dec 12^th, 2006, 12:58pm

on 12/11/06 at 11:15:09, chrisb wrote:

Hello,

Somethings I’d like to know are:

i. as a heavy binge drinker I drink a lot during the weekend – how will being a CH sufferer effect my drinking?
ii. What should I do about my glasses – persevere and wear them or take them back (I have a full guarantee on them)
iv. Finally the stupid question, when will I know if I’m an episodic suffered and that my cycle is over. Even on days I do not have an attack I get a dull/lingering pain in my eye/head/ear as if I know I will get one soon.

I had the same questions... even with the glasses, and yes wearing them was a trigger for me.

I was a binge drinker, until CH's.. ya gotta finda new hobby.. I had to find several and i'm still looking for a good replacement during baseball season. Some of the worst attacks are b/c of drinking. It sucks >:( and pisses me off, but it is what it is :-/

Now the glasses.. I had an appt and I put on glasses.. and it triggered... I think it had to do with the glare in the lenses. So try to get the ultimate protection.

O2 did not work for me, even though it seems to work for everyone else. Red Bull worked for me!!
And this is gonna seem crazy but Ginger Ale mixed with White-Grape Juice (NOT GRAPEFRUIT JUICE!!) decreased the intensity of my attacks. Now I "think" i'm out fo cycle so I drink a ton of water a day.

Which takes me back to the Alcohol.. I drink a gallon (3.79L) of water a day. If I know i'm gonna be binge-ing..I have to prepare by finishing the gallon of water, and then drink about 3 glasses of water per cocktail or pint of beer I have through out the night. And I have to be out of cycle. I did it once in cycle and the next 3 or 4 attacks were some of the worst!

I wish you well.. let us know how it goes!!

Title: Re: Another newbie.
Post by mathieulives on Dec 12^th, 2006, 1:02pm

on 12/11/06 at 15:44:50, chrisb wrote:

Thank's for all the replies.

Also with regards to driving, at the moment I am not doing so becasue this medication I"m taking makes me too drowsy, but how to others deal wtih it?

I really have so much respect for people who have to go through this on a frequent basis.

I couldn't drive. Driving triggered my attacks! AND I found the key w/ the RED BULL is to have it handy at all times and as soon as you feel the slightest twitch.. you've gotta chug it like a beer!! That's the only way I was able to catch mine..

Good Luck!

Title: Re: Another newbie.
Post by chrisb on Dec 14^th, 2006, 4:12pm

So i went to the doctors and it was another doctor, basically went through the same thing again but she thought the injections were too severe. I have been given Imigran50 Sumatriptan Succinate and so fare they have done nothing at all.

I will be going back on Monday.

Title: Re: Another newbie.
Post by BigCoffinHunter on Dec 14^th, 2006, 6:52pm

on 12/14/06 at 16:12:57, chrisb wrote:

Are those tablets? Those won't help an attack. Certain triptan tablets can be used almost like a preventative (I used amerge tablets before bed for quite a while successfully). To stop an attack you need injections or nasal spray. A healthy dose of O2 would be worthwhile as well.

Title: Re: Another newbie.
Post by LeLimey on Dec 14^th, 2006, 7:06pm

on 12/14/06 at 16:12:57, chrisb wrote:

Tell her to look in her BNF. The ONLY LICENSED TREATMENT in the UK IS the injections. In giving you the pills she is not doing her job properly.

Tell her ot look at the OUCH UK website for Dr Info. The article "Hospital Doctor" was written by Professor Goadsby and if she looks in the BNF she will recognise his name even if she knows nothing about headaches (which is already apparent!) as it is him ho has written everything on CH in the BNF.

He has to say this about Sumatriptan (Imigran in UK Imitrex in US)

Quote:

However, in this era of a cost-conscious NHS, some practitioners are reluctant to prescribe this relatively expensive drug. We feel that, given the devastating morbidity associated with this excruciating pain syndrome, it is unethical to withhold treatment for cost reasons. Although nasal sumatriptan is often used, it is considerably less efficacious than the subcutaneous formulation and there are no controlled studies to support its use.

Similarly, there is no evidence to support the use of oral sumatriptan in CH. Sumatriptan 100mg three times daily taken before an anticipated attack or at regular times does not prevent the attack and therefore should not be used for CH prophylaxis.

Hope that helps!
Helen

Title: Re: Another newbie.
Post by chrisb on Dec 15^th, 2006, 3:37am

yes they are tablets, after taking them last night for the worse attack i've had in the last 7 days I feel like hell this morning, could not open my eyes and feel very sick now.

It's frustrating, but thank you for your help.

Title: Re: Another newbie.
Post by LeLimey on Dec 15^th, 2006, 3:50am

Chris try getting a doctors appt today hon.
You might want to try the red bull trick too (Asda sells "Emerge" for 29p per can which is just as good and about a quarter of the price!) Tesco's Morrissons and Asda's own are all equally as good as red bull but none are as ceap as the Emerge from Asda. The trick with it is to chug the whole can at the first sign of trouble. Don't be dainty, swig it!
I'm not far away if you are stuck okay?
Helen

Title: Re: Another newbie.
Post by sandie99 on Dec 15^th, 2006, 6:22am

Chris, warm welcome!

I'm so sorry that you're hurting. But you WILL find a treatment, which will help you with your ch, I'm sure of that. :) It might take a while, but you will find it.

You can always come here, when you have comments, questions, things to wonder... There's always someone here to help and support you.

Wishing you pain-free time asap,
Sanna

P.S. Helen, I'm so going to stock up with Emerge when I come to UK! ;)

Title: Re: Another newbie.
Post by LeLimey on Dec 15^th, 2006, 10:38am

Sanna you know there is always a welcome for you here! [smiley=hug.gif] You have familial squatters rights LOL

Title: Re: Another newbie.
Post by BC_Battler on Dec 15^th, 2006, 6:35pm

Hey chrisb, welcome to the site. Last year I got hit with my first cluster headaches and I can't say enough about how helpful this board was.

I can't add much advice to what others have said, as they are right on the money. I will say this, though. Last year I got my first CHs during the Christmas season and didn't know what they were. I hadn't made the connection to the alcohol triggering attacks yet and I started drinking one night. 30 minutes later I was flat on my back, 60 mintes later I was in the emergency room at my local hospital. Since then I've learned to handle it, but be careful with the alcohol. I've actually found that I can have a beer now and then and it doesn't affect me the way it does others, but please be careful.

Also, the advice on going to a neuro was spot on. My neuro ordered CT scans and some other tests and then put me on prednisone (steroid for the short term) and then verapamil (beta blocker for long term). It's made a massive difference.

Good luck, Chris. I wish you all the best. Cheers -