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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Me, myself and I
        
(Message started by: Alylonna on Nov 2^nd, 2007, 12:15pm)

Title: Me, myself and I
Post by Alylonna on Nov 2^nd, 2007, 12:15pm

Hi, my name is Rivka. I'm 24 years old and I haven't got a picture lol. I don't like cameras.

I've had headaches on and off for years, since I was about 14 but I was only diagnosed this morning. I was taking so many days off work that I finally had to go to the doctor. I was previously a migraine sufferer but this last 6 weeks has been on and off headaches almost constantly. Didn't seem to matter what pills I took I couldn't find anything to take the edge off them. I've had bouts like this before but not often. I always assumed it was stress related.

I came online to do some research on cluster headaches and this is the first website that I found!! It's hugely informative and suddenly I don't feel quite so scared any more. Now that I have an explanation for why I've been feeling like this it all seems a little more bearable.

So it's nice to meet you all. I hope I can ask you all for advice because I only heard of clusters this morning so I don't know anything.

Title: Re: Me, myself and I
Post by LeLimey on Nov 2^nd, 2007, 12:31pm

Hello Rivka
Have you been prescribed any meds as yet?
Has an appt been made for you to see a neuro or was it a neuro you saw today?

Can you describe your attacks, how long they last, what happens, if anything triggers it and so on - the more info you give us the more help we can give!

Hang in there, we will do all we can to help I promise

Helen

Title: Re: Me, myself and I
Post by Alylonna on Nov 2^nd, 2007, 1:02pm

I saw my regular doctor this morning. Just the GP. He's given me propranolol in an effort to prevent the attacks from happening. He didn't make me an appointment to see a neuro - just asked me to go back in three or four weeks to see if I'd had any headaches while on the propranolol and then see where we go from there.

I don't get them frequently - I've always had headaches but it never occurred to me that they were happening in a pattern. In the last 6 weeks I've had 7 headaches on and off for a couple of days. I get a blocked right sinus, really bad pain in the region behind my right eye and nausea. It's similar to the migraines I get but I don't have the visual disturbances with the cluster headaches. When lie down if I lie on my right hand side the pain isn't so bad but if I lie on my left side it's excruciating. I've tried all the regular painkillers that you can buy over the counter and nothing even takes the edge off it. If I drink alcohol then the headaches are worse and I get vomiting. With the migraines it tends to be perfumes that trigger them but I don't know if that's similar with the clusters. It was incense that triggered the one off that started wednesday night which has been on and off until a few hours ago. I don't know if this is also to do with the headaches but I find that when I am between them I sleep very badly and have weird dreams. I also feel extreme exhaustion - on thursday morning I went to work and all I wanted to do was crawl into bed and die. I lasted about three hours and then had to come home and lie down but I don't sleep.

Thanks so much for helping in advance. It's much appreciated.

Title: Re: Me, myself and I
Post by LeLimey on Nov 2^nd, 2007, 1:15pm

There are elements that sound like CH in that list - and more importantly elements that DON'T.

Your doctor isn't a headache specialist and he isn't doing you any favours by not referring you. There are over 600 headache types and frankly, it takes headache specialist neuro to work through your symptoms and give you an accurate diagnosis. The meds we tae for CH are quite nasty and if given for a wrong type can kill. You deserve an accurate diagnosis.

Also, the first thing you do absolutely need is an MRI test. With pain of this severity any other cause MUST be ruled out.

I'm sorry I'm not much help at the moment Rivka, I want you to go back to your doctor and ask for a referral to a neuro. He cannot refuse you. It is your right under the NHS to see a spcialist in the field of your problem so for you, thats a HA specialist neuro and make sure its not just any old neuro too! A MS specialist will be of no use to you for instance.

Until you have a confirmed diagnosis I can't really mention any other meds as I don't want you taking something which may harm.

I can however discuss home remedies which we have all found great relief from and won't do you any harm.

First of all heat or cold. Most of us find one or the other helps. For me, a bag of frozen peas in a tea towel on the back of my neck and another against the sore side of my face is a godsend. Heat is a huge trigger for me and a hot steamy kitchen is hell. Others however swear by heat to helpt hem and find hot showers directed right onto their face a real blessing. Standing outside in the cold in the middle of the night is another of my little habits!

Caffeine. String coffee or high energy drinks such as red bull (or cheap equivalents) are brilliant if taken early enough. Caffeine is a vaso constrictor and so reduces the size of the dilated blood vessels which is what causes the intense pain of CH.

I hope this helps a bit. I'm sorry I'm not more use at the moment but I wouldn't be doing you any favours if I did any less. The least we can - and will do though is support you all we can whilst you get through this okay?!

Helen

Title: Re: Me, myself and I
Post by Alylonna on Nov 2^nd, 2007, 2:06pm

I think that's the next step he'll recommend if I take the beta blockers for a few weeks. When I go back I'll ask for a referral if he doesn't offer one outright. Thanks for all the information. I'll get some peas for the freezer straight away.

Title: Re: Me, myself and I
Post by Bob_Johnson on Nov 2^nd, 2007, 8:45pm

Your Rx is an old migraine med but has no real application for Cluster. Suggest you share this article with your doctor.

http://www.plainboard.com/ch/chtherapy.pdf

Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)

Title: Re: Me, myself and I
Post by CostaRicaKris on Nov 4^th, 2007, 1:04am

Hi Rivka,

It sounds like you're able to provide good descriptions of your headaches which is going to be very helpful, but I recommend taking it a step further and keep a headache diary (if you aren't already) Write down everything, how long they last, how they feel, what you ate/drank before they hit, what help, what doesn't. Helen is right, you need to see a neurologist for a proper diagnosis. Good luck,

Kris

Title: Re: Me, myself and I
Post by Alylonna on Nov 4^th, 2007, 5:48pm

Thanks both :)

I did decide to keep a headache diary. I mentioned in the other forum that I'm not entirely convinced that CH is what I have so I decided to get a calendar and write everything down. Thought it would help give a more accurate picture of what's going on.