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Cluster Headache Help and Support >> Getting to Know Ya >> Newbie.. http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1388321552 Message started by samantha86 on Dec 29th, 2013 at 7:52am |
Title: Newbie.. Post by samantha86 on Dec 29th, 2013 at 7:52am
Hi its so good to find this site,
Ive been trying for ages to get my gp to take me seriously. At first they said it was just tension headaches and put me on beta blockers but when I looked them up I realised that none of the symptoms matched what I am experiencing. That's when I found that cluster headache symptoms matched exactly. So I went back to my gp and she is finally taking it seriously.... Im a mum of four young kids and at times I feel like the worst mum ever as I just cant cope with the pain....I would quite happily give birth over this any day. It just seems like a never ending pain. Ive had this attack for four weeks now and I don't know how much more I can take.Excuse the typing ive forgotten what sleep is... :'( |
Title: Re: Newbie.. Post by AussieBrian on Dec 29th, 2013 at 2:53pm
G'day Sam, and welcome. Yes, there is hope and there is also help.
First thing is to get a sure diagnosis as this will rule out certain other problems, some of which are quite serious, and means you can start a management routine to give you your life back. Importantly, don't let anyone tell you it can't be CH because you're a woman. Not even Guiseppi! Let us know how you're getting on and we'll help you every inch of the way, then kiss the kids for us, Brian. |
Title: Re: Newbie.. Post by Guiseppi on Dec 29th, 2013 at 4:21pm
Importantly, don't let anyone tell you it can't be CH because you're a woman. Not even Guiseppi!
Let us know how you're getting on and we'll help you every inch of the way, then kiss the kids for us, Brian. EVERYONE knows girls only get migraines!! ;D ;D ;D Joe..(hoping Linda doesn't see this! :-/) |
Title: Re: Newbie.. Post by Mike NZ on Dec 29th, 2013 at 8:10pm Guiseppi wrote on Dec 29th, 2013 at 4:21pm:
Guys get migraines too! There have been far too many women told that they can't possibly have CH since "only guys" get them. This even appeared in some text books in the 1980s, along with the description that the guys who get them have lion like features. Welcome Samantha You've some great advice in the posts above from people who really understand what it is like to get headaches like you describe and the effort it takes to get a good, accurate diagnosis. If you've not started a headache diary then doing so would be a good move as it can help with the diagnosis. Each time you have a headache take a note of the time / date, intensity of the pain, duration, location of the pain, other symptoms and anything else that may be connected (as this can help identify triggers). Also start a list of questions you want to ask the headache specialist, write them down and tick them off as you go through them, taking notes. It is very easy (from experience) to finish and appointment and suddenly remember something important you wanted to ask. Read up all you can about CH and other headache types, ask all the questions you can think of and people will try to answer them. |
Title: Re: Newbie.. Post by steve1964 on Dec 30th, 2013 at 12:10am
Greetings Samantha, have been a sufferer for about 25 years now. The first five were the worst. I was sent from one doc to another and misdiagnosed for years. Then one day I typed my symptoms into the internet and bang it was there. everything about my headaches, it was me. Along with the imitrex injections, I have found relief from taking steroids. they are a pill form my neurologist prescribes. Sorry I cant remember the name at the moment it has been about a year and a half since I wnet through a major cycle, but the steroids give me about a week of relief before he takes me off them. then after about thirty days my doc will give them to me again for another week. My cycles start with about one headache every six months then progress to one a month then one a week then every night then every time I shut my eyes for two hours. Those cycles last about three months before they finally go away so the steroids help me get some sleep for a week during my ugly few months of hell. On top of that I am a epileptic so sleep is crucial so I do not have a epileptic seizure. Sorry I cant remember the name of the steroid I am not at home at the moment and don't have the bottle with me. also find a good doctor who is willing to help and try anything that may help you. While my doctor is polish and I can barely understand him at times, he is willing to try anything and is especially helpful when I am in the middle of a cluster. Good luck steve. If you have any questions I don't really check this board very often, I just wanted to check in and wish everyone good luck. Ps try crushing up four aspirin and eating them also when the little thump is letting you know the beast is around. If you want to hit me up I am at lars231@yahoo.com :)
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Title: Re: Newbie.. Post by Mike NZ on Dec 30th, 2013 at 3:00am
If it is CH then aspirin or even the strongest narcotic pain killers make little real impact on the pain. Instead the emphasis is on killing the CH using an abortive like oxygen or imitrex.
Steve - have you got any preventive, like verapamil, lithium or topomax, which can prevent many of your CHs which will avoid you having to use steroids (probably prednisione) every few weeks for months, which can potentially cause health issues plus cover you all the time, not just one week in four. |
Title: Re: Newbie.. Post by samantha86 on Dec 30th, 2013 at 5:14am
Thank you everyone for all the help. I was at the out of hours gp last night and they gave me Zolmitriptan but that did bugger all and so it was another night of waking after an hour and a half with excrutiating pain so I am back at my own gp this afternoon. I don't think I can take much more... :'(
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Title: Re: Newbie.. Post by maz on Dec 30th, 2013 at 7:30am
Hang in there Samantha. There are treatments and drugs that work, it's just a matter of getting it right. Before I say any more, I'm guessing from your post that you are in England. Let me know if not.
If you have definitely been diagnosed with CH, then ask your doc for sumatriptan auto injections. They work for most people in 5 minutes and are my new best friend. But be warned, you may only be prescribed 2 at a time and most pharmacies don't have them in stock so you will have to go back the next day when they've got them in for you. If they work, then ask your doc to put them on a repeat prescription and when your cycle ends, keep collecting them for a few days so you stock pile a few and that will see you through the first few days of your next cycle. Also check out "oxygen info". Highlighted yellow tab on the left of your screen. Try out the energy drinks tip in Guiseppi's post - it's a big help for some people. And finally look for posts by Batch about vitamin D3. If you send him a personal message he will give you all the info you need. I was sceptical about this at first because I've never been a big believer in suppliments. I always thought if you had a good diet then you were getting all you need, but I was wrong there. This regime of suppliments works for 80% of people who try it. It has certainly made a difference for me. Again, pharmacies don't stock the high doses you will need but I get mine from iherb.com. Hope I've helped a little, and good luck with it all. Maz. |
Title: Re: Newbie.. Post by wimsey1 on Dec 30th, 2013 at 9:01am samantha86 wrote on Dec 30th, 2013 at 5:14am:
Yeah, we've all been there. Our visits to the ER aren't much more successfully than was yours. You really need to take control of this yourself and then pull doctors alongside to help. Read up on CHs and cluster like conditions, demand a headache specialist, keep a headache diary and bring it with you. Then, you can begin to make progress against the pain. Ask any questions and keep us informed. blessings. lance |
Title: Re: Newbie.. Post by pubgirl on Dec 31st, 2013 at 12:22am
Samantha, I developed CH when I had a baby so I have a small idea how tough this is for you- I urge you to ring the OUCH Helpline 01646 651 979 (manned by specially trained fellow sufferers- they will call you back) they will understand the pain you are in, establish if your symptoms fit CH as your description of "never ending pain" isn't indicative, then help you get the right treatment . WtheB
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