|
||
|
Title: Hi everyone...I'm Sarah Post by sazzle on Jun 18th, 2005, 10:46am Hi, My name is Sarah, i'm 19 and from the UK. I'm relatively new to CH but have always suffered from a lot of headaches from being a child - but never from CH. They first started in my summer holiday to Spain last year in August. The first 3 or 4 days were fine, but by the 5th day at around 12 in the afternoon I started to get a pain behind my left eye and the pressure just got worse and worse, I thought it was just some sort of bad headache due to the sun, so I took my normal remedy for a bad head - solpedeine. However, this did nothing at all, which surprised me as that painkiller normlly shifts any of my headaches. What was really weird was the way i lost a lot of movement in the left side of my face, i would be crying from only my left eye and i had nasal congestion in my left nostril aswell. The weirdest part about it all for me (and for my family with me there) was the fact that within an hour the pain had subsided, and although feeling a bit worse for wear, I was back up and about and doing normal things. The next day came and I felt fine and didn't think too much about the pain I had yesterday, however, when 12 in the afternoon came again, yup, so did the same pain. This carried on for the rest of the 2 week holiday, with the pain getting gradually worse each time. It got to the point where I thought my eyeball would pop out or my head would explode. Nothing helped and neither did the family much, the kids (well teenagers) carried on not being supportive and plain annoying and it did cross my mind that my pain could be something more sinister - like a brain tumour. I was really worried about this as I knew something wasn't right, but as soon as I mentioned that, my step mum found it funny and took the mck out of me for saying it - in fact, I remember the last day of the holiday, we were having an evening meal in a restaurant the night before we were due to return to England and my dad said to all four of us "So what are you all looking forward to going home to the most" the others replied usual stuff, but I said "To get to a doctor and get to the bottom of this". To that my step mum laughed again and said "Yeah, course, coz you have a brain tumour, don't you?". I couldn't begin to explain to them how much those comments don't help and how much worse they made matters. It's one thing suffering, but when people don't believe or understand or even want to understand, it a completely different matter. Once we got back to the UK, I made an appointment for the same day at the doctors and was told "You're suffering from migrane, my girl". So off I went with Migraleve yellow. I had a bit of relief and no CH for a couple of days, however, after about 3 days, when I was staying over at my Nanna's house I had another one. This time my nanna and my mum saw the state I was in and both ended up in tears. Thats when my nanna decided to pay for me to see a consultant privately. After visiting the consultant, almost straight away I was diagnosed with CH, but I also had to go for 2 MRI's to make sure it wasn't anything like a tumour.....thankfully it wasn't! I was prescribed the nasal spray to try for when I next had one, however, touch wood, I havn't had one since so havn't seen it's effect. I'm due to go away to both spain and turkey for 5 weeks in the summer and I just hope I won't have to experience them again. I would like to try O2 treatment, but do you think it would be possible to get it flown over with me or do you think there will be restrictions as they aren't the smallest of things are they! Anyway, enough of going on and boring you all. I'm really glad I've found this site as no one seems to know what I go through when I have them (apart from you guys). I'm pretty sure they will come back at some point as I've heard that once you have them, you're stuck for life, you're just never sure how long the gaps will last?!? Bye for now, Sarah :D |
||
|
Title: Re: Hi everyone...I'm Sarah Post by pattik on Jun 18th, 2005, 10:56am Hello Sarah, So sorry to hear you have been diagnosed with CH, but welcome to the board. Hopefully you won't have another episode for a long time, but until then, look around this site and read as much as you can for future reference. Check this site out from time to time to keep up on what's working and not working for people. And you will also fine much support here if and when you need it. Glad to meet you. :) :) Pat edited to add: We have many members from the UK, so hang around and I'm sure you will be hearing from them. |
||
|
Title: Re: Hi everyone...I'm Sarah Post by LeLimey on Jun 18th, 2005, 11:20am Hi Sarah, I'm Helen, nice to meet you! I'm sorry you had such a bad time of it on holiday and I'm sorry you got the "just a headache" routine.. sadly that is not uncommon. At the top of this board there is a letter for friends and employers (and family!) etc which you can print off.. its quite useful to be able to show them what you are up against. Whilst I fervently hope you don't get hit on holiday its best to have precautions and I love my o2. It aborts really quickly (10-15 minutes usually) but you do need to be using it correctly or its about as much use as a chocolate fireguard! You need to use it at between 8-15 LPM, some people find it effective at 8 - others find it needs to be at 15. Its personal, experiment until you get it right for you! You also need to be using a non rebreather mask. The nasal jobby just will not do it! (You can buy these in Boots or even cheaper from OUCH UK) Which brings me neatly to my next point! OUCH UK - go and have a look there, I'll add the link for you in a minute. TONS of advice on O2 and especially and most relevant for you how to arrange it for in flight and abroad. Also tons of advice in general help and support (which it doesn't sound like you have had much of [smiley=hug.gif] ) They even have a helpline which you can ring and someone will call you back. One big thing I really should advise you of and at 19 its killing me to have to say it.. but if you go into cycle do not drink alcohol!! Its a major trigger for a large amount of the CH population. You may be one of the lucky ones but treat it with respect if you want to test it okay?! Lastly it is imperative that you come back and tell us how you get on okay?! I hope you have a fantastic holiday and that the beast can't find you! PFDANS Helen (Nottingham) PS: Link to OUCH UK... specifically look under the treatments button at all the O2 info there.. several sections! http://www.clusterheadaches.org.uk/home/index.cfm?address=../home/txt_welcome.cfm&added=Dec2001&code=AD |
||
|
Title: Re: Hi everyone...I'm Sarah Post by sazzle on Jun 18th, 2005, 11:47am Hi Thanks Pat and Helen for your help. I've just taken a look at the Oxygen abroad and I'll look into doing that....I've got a few weeks yet though (21st July), need to get my exams over first! I was also trying to look for that letter you mentioned...but I can't see it anywhere at the top of this board! It's OK, if laying of alcohol helps....I'll do it....anything but trigger them! Doubt many of my fiends will understand the reasons, but oh well! Thanks again ;;D [smiley=hug.gif] Sarah |
||
|
Title: Re: Hi everyone...I'm Sarah Post by pattik on Jun 18th, 2005, 12:07pm Sarah, here is the link Helen mentioned, but I'm having trouble opening the file. Maybe you will have more luck. [smiley=hug.gif] http://www.clusterheadaches.org/Cluster%20Headache%20Syndrome.doc |
||
|
Title: Re: Hi everyone...I'm Sarah Post by LeLimey on Jun 18th, 2005, 12:16pm Sarah if you need anything else just ask okay?! I'd definitely recommend giving the helpline a ring too as you will get through to another sufferer like us and you'll be able to get loads of tips on how to manage abroad from people who have been there and done that! I'm facing my first trip abroad since CH next month too and I'm a bit apprehensive to say the least! One last little suggestion, I noticed you have the nasal imigran (referred to as imitrex on this site in case you get confused!)... it works for alot of people but not as fast as the imigran injections which I have. You might feel a bit queasy about injecting yourself but don't worry.. its a pen type thing you jab yourself with so you don't even see the needle! When I tell you it aborts a hit in less than 5 minutes usually it might seem more attractive though! They ARE expensive but your GP can't refuse on grounds of cost because they are the only licensed treatment for CH in the UK. If he looks in his BNF (British National Formulary) he will see this! (Learnt that little tip and phraseology from OUCH UK so I'm telling EVERYONE!! LOL) |
||
|
Title: Re: Hi everyone...I'm Sarah Post by sazzle on Jun 18th, 2005, 12:45pm Thanks so much again. I will give the helpline a try in the next couple of weeks after i've got all this extra stress out of the way. You'll have to let me know how your trip goes. I've just mentioned it to my Dad about the o2 and injections but he's saying that I won't have anymore coz i won't go out in the mid-day sun this time. I'm convinced it's nothing to do with being in the mid-day sun, it was just coincidental that mine occured around mid-day every day for 10 days. The consultant did say that change of climate can tigger them....therefore I'm buggered aren't I going away for 5 weeks!?!? Do you think that the sun brought it on? It's so frustrating someone telling you "you won't have anymore CH's" How do they know?!?! I really feel like it's a bomb waiting to go off.....like i'm sure most people on here do. Have you ever heard of anyone getting one lot of clusters and them never coming back? also, I know that the 6 imigram i got are meant to be about £75 but my GP got them on prescription for me. How much more are injections in relation to that? I think I will need quite a few if i'm away that long. Also, do you use imigram and o2 at the same time then? Thanks again, Sarah |
||
|
Title: Re: Hi everyone...I'm Sarah Post by SusieWong on Jun 18th, 2005, 1:12pm Hi Sarah, I'm Sue, I don't have CH myself, but support my husband so I do know what you are going through. There is not a lot that I can add to Helen's good advice but I do urge you to ring the OUCH UK helpline and look on their site. You will get lots of help regarding O2 and medications abroad. Yes, oxygen is used at the same time as Imigran - but not for the same attack. You can only use Imigran twice in any 24 hours so if you have more attacks than this then you can use the O2 to stop them. It is also usual to take a preventative medication too. This reduces the number and severity of attacks. Verapamil is usually the first choice but again take a look at the UK site for information on this. I'm not sure of the cost of the nasal spray but Imigran injections are about £47 each!! GPs are reluctant to prescribe because it makes a large dent in their practice budget! We are lucky in having the NHS, in the states folk have to rely on medical insurance. Your consultant is correct in saying that heat is a trigger for CH in some people but, the cold also triggers it for others. Everyone is different. Good luck with your exams. Wishing you PFDAN. Sue. |
||
|
Clusterheadaches.com Message Board » Powered by YaBB 1 Gold - SP 1.3.1! YaBB © 2000-2003. All Rights Reserved. |