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Title: Question about location of pain Post by Michelle_Australia on Jul 9th, 2005, 7:11am Hi to all, My name is Michelle and I am 24 y.o. I have had terrible pains on the right side of my head (that come and go) for the last 6 months and after visiting numerous doctors and having 2 ct scans of my head, I have finally found a caring Dr who has paid more attention to my symptoms and diagnosed me with severe cluster headaches. Finally, someone who knows what they are, after everyone telling me that they are migrains and to simply take heaps of painkillers. All my symptoms relate to cluster headaches, pain being onesided, in my case always on my right side, blocked right nostril, the hideous pain that wakes me up within first few hours of going to sleep aswell as attacks during the day. However, my question is to ask if any other CH sufferers experience the same type of pain as I........when my throbbing pain hits me, its actually on the right slightly top side of my head and not behind my eye or temple. I have read through the info my Dr has given me and have noticed that it does state "pain is rare in other locations other than temple/front of head" which is why I am slightly curious... Look forward to hearing from any of you. Many thanks and take care |
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Title: Re: Question about location of pain Post by E-Double on Jul 9th, 2005, 7:20am Hiya, Sorry you're dealing with any pain!! Take the "cluster quiz" there are several HA that present themselves similar to CH yet are responsive to different meds and differ in duration, intensity and location...... take the quiz and check back in a few. We'll take it from there ;) Best, Eric |
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Title: Re: Question about location of pain Post by Michelle_Australia on Jul 9th, 2005, 7:39am Hi Eric, thank you so much for getting back to me.... Have been reading/studying this site for the last few days - its amazing and very informative so glad I found it. Have done the quiz and sure enough all my responses apply to yes to suffering from CH....except for the droopy eye however I did have a bit of a blood shot right eye which probably applies. Will pay more attention to my eye next time around.....i am praying there won't be a next time round.... |
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Title: Re: Question about location of pain Post by AussieBrian on Jul 9th, 2005, 7:47am Michelle, Welcome, and g'day from the other end of our great state. There's a few other Aussies about, and some kiwis too, so you're anything but alone. Firstly and importantly, it's vital that your diagnosis is correct. Great that you've a doctor you're happy with and who might even know something about it (a rarity in itself) but don't go worrying over specifics like it being one inch too far to the right or a centipede left of centre. We're not doctors here and we don't pretend to be, but give us a few more details and certainly take the Cluster Quiz on the left. We'll help and support you every way we can. Also, PM me anytime if I can help in any way. We're on your side, mate, and welcome home, Brian up north. |
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Title: Re: Question about location of pain Post by E-Double on Jul 9th, 2005, 7:59am We are all different yet mostly have the same monster. Sometimes when mine starts, it begins in the neck, jaw, and pressure in temple then POW!!! How long do they last?? Does it ever go into the eye??? I ask because of different HA types that may be relieved by different meds. Though CH is my primary HA/diagnosis, I have a few other entities in my brain ;) [smiley=laugh.gif](additional HA) that are under control with other meds that are not so nasty but do not really help the CH. Hugs and regardless of what it is we will try to help :) Eric |
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Title: Re: Question about location of pain Post by Michelle_Australia on Jul 9th, 2005, 8:01am Hi Brian, thanks for the info. I think maybe I am just being too paranoid, I guess I was just worried as my pain was on the top of my head and no where near my eye or temple. Thank you for the lovely welcome fellow Queenslander. |
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Title: Re: Question about location of pain Post by Michelle_Australia on Jul 9th, 2005, 8:14am hi again Eric. Attacks wake me up and I get a few blows throughout the day, my last CH lasted for nearly 2 weeks and pain never hits my eye, only right side on top of head. Wow Eric, are you on daily meds, my Doc mentioned going on a daily med to prevent them but I am going to see how I go..... Do you think perhaps specific foods trigger our attacks? |
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Title: Re: Question about location of pain Post by AussieBrian on Jul 9th, 2005, 8:24am Pleasure's mine, Michelle, but I can think of lots of other places I'd rather have met you. Fact is, we have only one weapon in our arsenal when it comes to fighting this beast - information! You're in the right place to find that info while always remembering that what works for one person doesn't work for all, and just because it works for you this time is no guarantee it'll ever work again. It's also worth your time to cruise through Supporters Corner just to see the effect we have on those around us. They do it pretty tough, too. All the best, and there's got to be some real rain soon, Brian. |
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Title: Re: Question about location of pain Post by paul_pero on Jul 9th, 2005, 8:44am Hi Michelle Welcome aboard, but sorry to see you here. I get pain in the top of my head too, as well as behind the eye and down the back of my neck sometimes. Anyway it always hurts!!!! I'm in NSW. (who won the state of origin [smiley=laugh.gif]).PM me too as well as Brian, he has been a great help. Has the doc mentioned O2, I only got it this year and it has been wonderfull. Read and take info to doc. http://www.brightok.net/~mnjday/chtherapy.pdf http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm PAul |
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Title: Re: Question about location of pain Post by E-Double on Jul 9th, 2005, 8:55am I'm starting to sound like I am nit-picking..... I certainly don't question but before I dishout the treatment advice, I ask. 2 week cycles, wake up calls..........how long does each attack last?? I'm getting somewhere that will lead in a specic direction depending on the answers. Hugs, Eric |
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Title: Re: Question about location of pain Post by Michelle_Australia on Jul 9th, 2005, 8:57am Hi Paul, thanks for the welcome and info. Doc did mention O2, will speak to him about it next time i get an attack, it would probably be a good idea to have it at home. Do you have it at home? Yes, Go the Blues - I was born in Sydney!! |
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Title: Re: Question about location of pain Post by Sean_C on Jul 9th, 2005, 9:17am on 07/09/05 at 08:14:13, Michelle_Australia wrote:
Hi Michelle, sorry to hear your having a rough time of it. Does your headache last for 2 weeks? Sean........................................ |
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Title: Re: Question about location of pain Post by E-Double on Jul 9th, 2005, 9:18am I was asking because there is a HA called Hypnic/Alarm clock Headache http://216.25.100.131/ihscommon/guidelines/pdfs/full_form_watermarked.pdf But it does seem that you do not fit that one.....so welcome to CH! Here ya go: my spiel.... Since being diagnosed I have been on preventative meds and abortives such as imitrex injections (which I try my damndest not to use) I also use Oxygen......MOST here will highly recommend this if nothing else... If you do choose to attempt medications, This is a great resource to know like the back of your hand...print it out and give it to your doc http://www.brightok.net/~mnjday/chtherapy.pdf It will present the appropriate treatments that you should seek and your doctor should know!!! If you want an abortive with the least amount of danger/side-effects O2 should not only be requested but demanded from your doctor!!! http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm If you do have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep. With the exception of 10-12 times.....I have slept through the night since August '04 (went chronic in March 05).....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time. Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not... The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern. I stayed with melatonin and have had decent sleep overall. It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression..... Like I said we are all different. Best wishes, good luck & stay as positive as you can!!!! Eric |
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Title: Re: Question about location of pain Post by AussieBrian on Jul 9th, 2005, 9:22am Go the Blues???? That's me finished with you, Michelle! Call yourself a bloody Queenslander??? I really hope you DO suffer this dread disease and never get over it, and it comes back in your next life to haunt you again and again. So bloody there with bells on! Also, Eric's questions are especially relevant. We're all really hoping you've been wrongly diagnosed so we can send you back to Cockroach Country where you obviously belong. During the meanwhile, a bit more info would be nice so we can assure ourselves it really is the beast, not just some other little problem in disguise. Go the Mighty Maroons (next year), Brian. |
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Title: Re: Question about location of pain Post by Sean_C on Jul 9th, 2005, 9:35am on 07/09/05 at 09:22:59, AussieBrian wrote:
I don't know what a Queenslander is? What is it ;;D I'm guessing soccer ;;D |
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Title: Re: Question about location of pain Post by AussieBrian on Jul 9th, 2005, 10:01am on 07/09/05 at 09:35:06, Sean_C wrote:
Sean, Queensland isn't so much a state of Australia as a state of mind. It's another word for paradise, mate. Bloody paradise. And you're welcome. |
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Title: Re: Question about location of pain Post by Michelle_Australia on Jul 9th, 2005, 10:16am Hi Sean, my CH come and go over a 2 week period by waking me up in first few hours of sleep and also by attacks throughout the day. How about you? |
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Title: Re: Question about location of pain Post by Sean_C on Jul 9th, 2005, 10:24am I've had Ch for 26 years, mom said I'd grow out of them about 25 1/2 years ago, hopefully she's right ;;D Sean........................... |
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Title: Re: Question about location of pain Post by Sean_C on Jul 9th, 2005, 10:29am I need some of this Brian ;;D http://www.goldcoastaustralia.com/Images/100238.jpg Sean............................ |
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Title: Re: Question about location of pain Post by AussieBrian on Jul 9th, 2005, 11:38am Sean, Happy to oblige, just forgive me that I can't post pictures (I'm a nerd-gin). Type "dauan island" into your machine and look for anything that says OzOutback. Dunno who they are but there's some lovely photos there and I hope they make a buck out of it, they deserve it. Most of the pics were taken within 20 yards of my front door and that's my view each day. I'm sure the lovely Michelle can also put up heaps of pics about her little patch of heaven, and it's not called Surfer's Paradise for nothing! I'll admit it's nice having other Aussies aboard, I just wish there was another reason for it, but she supports the nasty-horrible-cockroach Blues (ucky and yucky and lurking and bleh) so deserves everything she gets in return. So bloody there, Maroon Brian. |
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Title: Re: Question about location of pain Post by Sean_C on Jul 9th, 2005, 3:26pm You see this everyday? http://www.ozoutback.com.au/postcards/postcards_forms/qld_tablelands/Image/au128361.jpg Your a lucky man ;;D Sean...................................... |
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Title: Re: Question about location of pain Post by marlinsfan on Jul 9th, 2005, 7:29pm on 07/09/05 at 08:14:13, Michelle_Australia wrote:
Hi Michel, Some foods ABSOLUTELY bring on attacks! My triggers: Alcohol, chocolate, nuts, tomato, parmesan cheese, orange juice, strawberries, others too. Also something in Indian food. Had an early dinner at an indian restaurant last weekend and got a very rare HA while awake an hour later. Mine mostly come at night while I sleep. Have you tried melatonin to help during the night? How about oxygen? Good luck and PF wishes. Jose |
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Title: Re: Question about location of pain Post by Michelle_Australia on Jul 9th, 2005, 8:49pm Hi Jose, thanks for your info. Haven't tried O2 yet, however certainly will if I get another attack. PF Wishes to all. oo P.S - Brian, will you forgive me if I tell you that I am a Brisbane Lions supporter? |
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Title: Re: Question about location of pain Post by AussieBrian on Jul 9th, 2005, 9:05pm Partial forgiveness, I suppose, but I'll be thinking rotten things about you this time next year. And yes, Sean, it's a beautiful place I live in. It's also my shout when you get here. |
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Title: Re: Question about location of pain Post by Kirk on Jul 10th, 2005, 1:07pm Quote:
Could you clear this up for me please. Did the headache last two weeks? Or was it a 2 week cycle? I find that O2 and Imitrex are the best abortives for. You should certainly ask your doc about O2. TTFN |
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Title: Re: Question about location of pain Post by Michelle_Australia on Jul 10th, 2005, 7:00pm Hi Kirk, sorry I didn't clarify this...am still getting used to all this new stuff I am learning about CH. It was a 2 week cycle where the CH would wake me up in the first few hours of sleep and then even a few attacks throughout the day. Right nostril blocked etc. Will look into o2 with my doc next time I get hit....hoping there won't be a next time but it seems to be coming in 6 month cycles.... Do you ever get pain on the right top side of your head? All info I have read refers to CH pain being behind eye or temple area, and pain in other areas is rare, so I guess I am special!!! |
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Title: Re: Question about location of pain Post by paul_pero on Jul 11th, 2005, 1:40am Hi Michelle As far as triggers for my HA's go, alcohol seems to be the only trigger for me :-[. I brew my own beer and really enjoy a drink so the break in drinking is just another bad part of the cluster headaches. Paul |
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Title: Re: Question about location of pain Post by paul_pero on Jul 11th, 2005, 1:43am For you not in Australia, We have a game called Rugby League. Every year two states New South Wales and Queensland play a best of three series. This year New South Wales won. [smiley=laugh.gif] That's why AussieBrian is not happy! :'( |
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Title: Re: Question about location of pain Post by AussieBrian on Jul 11th, 2005, 1:48am It gets us all differently and it differs from cycle to cycle, or even within a cycle, and there simply are no hard and fast rules. Oh that there were! Regarding O2, don't leave it until your next hit. Discuss it with your doctor on your next visit because last time I was after some it took a specialist's script, not a GP's. There's heaps of info here about 02, some written specifically so's you can print it out for the doctor. May be worth looking that out, too. Good luck, good health, and I hope your weather's a bit better than mine just now. (Too windy for the fish.) Cheers and beers, Brian. |
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Title: Re: Question about location of pain Post by AussieBrian on Jul 11th, 2005, 1:53am on 07/11/05 at 01:43:22, paul_pero wrote:
Very UNhappy, in fact, but it just to prove the Cockroaches were able to pay the ref more than we good guys could afford! |
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Title: Re: Question about location of pain Post by Kirk on Jul 11th, 2005, 9:00am My attacks always start right behind the right eye and then spreads to the sinus, jaw and ear in that order. When it is a Kip 7 or better (worse?) it involves the top of my head on the right side, along with the other areas. It almost feels like he has opened an extra hole there, and is pounding a very nasty spike into it. If I were you, the next time you're at the Doc get the O2, so that you have it first thing next time you get hit. O2 doesn't go bad if it sits around 6 months or a year. I keep an "E" tank all set up rite next to my bed, for when that sucker shows up. Please be well [smiley=smokin.gif] |
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Title: Re: Question about location of painMy Ch start at Post by Sandy_C on Jul 11th, 2005, 2:05pm My CH start just below my right eyebrow, then gravitates into my eye (which cries like a baby), into my nose (which runs like a faucet) across to my temple and into myear (which is probably the worst pain for me), and from there, down to my jaw, into my mouth (the inside of my mouth swells and feels like hot molten lead), across my teeth, while at the same time, tracing along the nerves to the top of my head, and down the back of my head to my neck. Just draw a damn dotted line from the middle of my chin straight upward, across my head and down to the nape of my neck. The entire right side of my head is in agony while there is not one spec of pain on the left. :-/ My triggers are alcohol of any kind, marinara sauce [smiley=huh.gif], and any strong perfumed smell (I avoid the perfume counters at the mall, and any store with incense burning). It's an immediate trigger - within 5 minutes. During cycle, I can't even wear my own perfumes, or even shampoo/conditioner, body wash, etc. with any heavy scent. In other words, during cycle - I smell like soap. :-/ |
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Title: Re: Question about location of pain Post by Michelle_Australia on Jul 11th, 2005, 8:54pm Hi Kirk and Sandy C, thanks so much for defining your CH to me...it reassures me to know that both of you experience the pounding/throbbing on the top side of your head....as I thought I was the only one. I am sorry that you are both feeling the pain though as it is a hideous one. PF wishes. |
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