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Title: suffered a decade without knowing its name... Post by SourdoughStomper on Jul 1st, 2005, 11:39pm Greetings from the newbie. I am SourdoughStomper. Goofy sounding name with a long story that I might get into later. I really wanted to use Sunflower, but it was taken. Nerts. I never knew my pains had a name. The closest I came to it was tension headaches. But they started before I even really had that much stress in my life. In fact, I thought I was the only one in the universe with these kinds of pains, feeling that I had somehow inflicted them on myself. I am a 28 year old woman. Stay-at-home mom of 3 youngsters, wife of a Canadian. (I'm American, from Arizona). I started suffering these neckaches around the time of my senior year in high school, 10 years ago. Back then, they didn't happen as often and they were fairly mild. Not fun, but mild. Popped some tylenol as soon as I felt it coming. Fortunately, it didn't happen too much so I never felt compelled to exceed the recommended dosage. During the past 5+ years, they've been worse. They seemed to get worse with each cycle. I called them my "neckache seasons." It would start with the neck muscles on the right side of my head getting really tight and painful. I got tired of popping tylenol, as my neckaches would last about half an hour and by the time the stuff kicked in it would start fading off anyhow. And who wants to take that many in a day. So my next best solution was to get the hot water bottle, fill it with the hottest tap water, and lay down with it under my neck. I don't know if it really works or makes my neckaches go away sooner.... but it felt better than nothing. It has been in the past year that it feels really bad. I described this way quite some time ago in my journal. **** I'm in the middle of one of my neckache seasons. Started gently (if you want to call it that) about a week plus ago. Then getting more intensely painful. The muscles in the right side of my neck tighten up, hurting like someone with sharp fingernails grabs my neck muscles and twist them cruelly and ties them in knots. Those neck muscles bunch up so tight that it stretches the muscles in my face back a little bit, even making my right eye water. I usually have to fetch my hot water bottle and fill it with the hottest water from my tap. And then I lay down with it under my neck. I don't think it makes the pain go away, or makes my neck relax any faster. But it is a little comforting, so that's what I use. The pain can last up to 30 minutes, and it happens frequently. I actually counted them on Saturday. I had about 11 of these things during the course of the day. And when I went to bed at midnight, I had about 4 of them between the time I went to bed and the time I got up. Makes for little sleep during those period. **** I go a couple of months without these pains. Then when they are here, I suffer about a month. It's most unpleasant to get them while driving, or away from my hot water bottle. This last time, when I went on a boat outing, I took some Motrin. I noticed that I was headache free for hours. Woohoo! So I started taking them about three times a day and I had no neckaches. But this was only the last week of that cycle. I still really do not want to take Motrin 3 times a day for 30 days or so. Can't be too good. I have not been to the doc about it. (I have explained I get tension headaches to my chiropractor, though.) When I was pregnant with my second, I was in to see my doc and causually mentioned these neckaches while I was having a prenatal exam. He said, "sounds like tension headaches" and then didn't say anything more about them or treating them or anything like that. I don't see him anymore because I got tired of him being so aloof and treating me like I'm weird for asking questions. But now I'm doctor-less due to a doctor shortage, here in the Yukon. (lovely healthcare, yes no?) Now to get to the revelation. Yesterday while shopping at the grocery store, I saw those cheapy little self-help/health/whatever little booklets. I saw one about headaches and grabbed it. In there I was exposed to this word "cluster" headaches. That lead me to look it up on the web and then to here. I was kind of shocked to see that my headaches, me being the only person in the universe to get these kinds, was not the only person to get these kinds. Wow. *hugs everyone* |
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Title: Re: suffered a decade without knowing its name... Post by Sean_C on Jul 1st, 2005, 11:53pm Sorry to hear that your having a rough time of it, but you don't have clusters. Lieng down is not possible. Do you have a nuero? Sean................................ |
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Title: Re: suffered a decade without knowing its name... Post by BobG on Jul 2nd, 2005, 12:15am Hello SourdoughStomper, Sorry to hear you're in pain. Neckaches? Popped some tylenol, neck muscles getting really tight and painful, lay down, neck muscles bunch tight I have to agree with Sean. The words you've used do not describe cluster headaches. I'm not a doctor so I won't even try to diagnose. On the left side of your screen is a 'cluster quiz' button. Click it and take the quiz. Then come back and let us know what the results are. Maybe we can help direct you to relief. Hope so anyway. And tell us about the SourdoughStomper handle. |
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Title: Re: suffered a decade without knowing its name... Post by SourdoughStomper on Jul 2nd, 2005, 1:10am Questions 1-8: 1 yes, 7 no Questions 9-16: 5 yes, 3 no |
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Title: Re: suffered a decade without knowing its name... Post by E-Double on Jul 2nd, 2005, 1:34am Hi Sourdough, Many a time I get the knotted neck pain along the side of my CH....I get a huge ganglion lump. But the biggest identifying aspects of CH are: *Unilateral "head" pain...EYE,Ear,Jaw *the fact that we all feel like our eyeball is being either ripped out of our skulls *being poked with a red hot skewer *eyeball is going to explode from the pressure *brain is being probed by scaulding samurai sword * RELENTLESS PAIN that most can not be still..rocking, pacing, jumping, banging, screaming, moaning, crying *PRAYING FOR DEATH!!!! There are different HA that present similar to CH yet differ in duration, location, intensity and that are responsive to different medications....... You mention using Motrin which is a NSAID (non steroidal anti-inflamatory drug)... This is possibly telling b/c some other HA types are very responsive to such meds @ high doses. Unfortunately CH is not. If you want to learn about any and all identified HA read through this......the International Headache Societies Frameset: http://216.25.100.131/ihscommon/guidelines/pdfs/full_form_watermarked.pdf We are definitely a rare breed and I sure as hell hope it is not what you have. Pain sucks regardless!! It just appears to us that it may not be Clusters that are as you put it Neckaches. We do not judge, we just want people to make sure that they get proper diagnosis, treatment and help!!! best of luck and Research Reasearch, Research!! E |
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Title: Re: suffered a decade without knowing its name... Post by BobG on Jul 2nd, 2005, 1:47am on 07/02/05 at 01:10:01, SourdoughStomper wrote:
Thanks. Can you tell us your answers to each of the questions 9 thru 16. Maybe we can narrow it down a little more. Do you get pain in and around your eye? How about the temple? The jaw/teeth? Do the headaches (neckaches) wake you from a sound sleep? |
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Title: Re: suffered a decade without knowing its name... Post by SourdoughStomper on Jul 2nd, 2005, 2:49am Oh. :-[ How disappointing, I thought I had made progress. Back into the mysterious lonely universe, I guess. *** Anyway, to be more specific about the last set of questions. #9) Are your headaches always on the same side of your head? Yes #10) Do your headaches normally wake you up from a sound sleep? Yes #11) Do your headaches normally occur at the same time of the year and same times each day? Since I haven't recorded the times of day nor months of year, I cannot really say for sure. I'll lean towards yes, however. Seems they bother me in the spring too. #12) Do you normally experience a stuffy nostril on the same side of the face as the pain? I don't think so. #13) Do you normally experience a "droopy" eyelid on the same side of the face as the pain? I've looked at myself in the mirror while in pain. It FEELS like it's drooping and being stretched across-ways, but it doesn't appear so. #14) Do you normally go from totally pain free to totally debilitated in 5-10 minutes? Yes, if by debilitated you mean complete agony and desire to do nothing but wait until the pain goes away. #15) Do you normally go from totally debilitated to totally pain free in 5-10 minutes? Yes. #16) When you have a headache, do you walk, pace, bash your head, thrash, scream? This is where I say no. I feel like moaning and sometimes sobbing, but I mostly just lay down and hurt. :'( Quote:
Yes, I do feel pain around the eye. I feel a tighness in that whole right side of my face. My jaw and teeth do not hurt. And yes, these things have woken me up from sleep. I usually have to go fetch my water bottle and lay with it for half an hour before I can go back to sleep. |
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Title: Re: suffered a decade without knowing its name... Post by E-Double on Jul 2nd, 2005, 9:17am Get to a doctor!!!!!!!! |
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Title: Re: suffered a decade without knowing its name... Post by lionsound on Jul 2nd, 2005, 10:13am Hi Sourdough, I'm a stay at home mom of two and I know how hard it is to take care of your family and yourself while in pain all day.[smiley=hug.gif] It is very important that you TAKE CARE OF YOU!!!! Please get to a doctor. You deserve proper diagnosis and treatment for your headaches. Bring your journal to the doc's office. (Be sure it has durations and time of HA as well as meds you've taken)Please let us know how you make out. Be well and Pain Free, lionsound |
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Title: Re: suffered a decade without knowing its name... Post by Kim Y. on Jul 2nd, 2005, 11:52am Welcome, Sourdough Stomper. Sorry that you are hurting. I agree with the others you need to get in to see a doctor. My neck knoted up as well. To be honest in the begining I think I even got tension HA and then the progressed as time went on to this Beast. Have you tried Excedrin Tension HA not saying that is what it is but in the begining when I had tension HA that is what helped me until it didn't work anymore and the pain grew more and more intense and one sided. Take cate and PF wishes.........................Kim |
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Title: Re: suffered a decade without knowing its name... Post by SourdoughStomper on Jul 2nd, 2005, 12:12pm I suppose I should try to see a doctor. *sigh* Not going to be easy without a family doctor. I'll wind up going to someone I don't know and pray he or she doesn't shrug me off and charge me $50 for the privilege. Am I still welcome on this board even if I don't quite fit completely, or shall I skedaddle? Thanks for the advice, though. |
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Title: Re: suffered a decade without knowing its name... Post by E-Double on Jul 2nd, 2005, 12:22pm I'd say keep us updated from now on...... Sounds like you have many cluster traits from your follow up post after the "quiz" Though there may be doctor sufferers here I am not one of them..... I can offer ya some non-medicinal advice that might help alleviate some of your pain..... Some tricks that I used to use and sometimes still do are: *Wrapping a bandana tightly around my skull (be careful) *neck rub ;) *Filling a sink with scaulding water creating a steam bath and placing my head over it with a towel covering it. *Going from Steam to Frigid shower. *Standing infront of A/C *Icepacks or frozen veggies on the back of the neck or eye *Tons of STRONG coffee. I wish I had more to help ya but not too comfortable talking about meds if someone says they do not know what they have.......I was there not too long ago and though I certainly wanted info..I appreciated most people giving me household remedies per se' until I got diagnosed. We take dreadful meds. Hugs to you and do read that link I sent you earlier for there may be a match but YOU STILL DO NEED TO GET TO A DOCTOR JUST IN CASE IT IS SOMETHING MUCH MORE SERIOUS!!! I hope not and do wish you well! Eric |
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Title: Re: suffered a decade without knowing its name... Post by don on Jul 2nd, 2005, 2:09pm Stick around until you get the correct DX and treatment. Where else are you going to go? |
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Title: Re: suffered a decade without knowing its name... Post by Jonny on Jul 2nd, 2005, 5:58pm on 07/01/05 at 23:39:09, SourdoughStomper wrote:
In 30 years I have NEVER laid down with a cluster! |
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Title: Re: suffered a decade without knowing its name... Post by Sean_C on Jul 2nd, 2005, 6:11pm on 07/02/05 at 17:58:29, Jonny wrote:
26 years and I still fear sleep :-/ http://www.medicalagenda.com/video/TheDrip1.avi |
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Title: Re: suffered a decade without knowing its name... Post by Racer1_NC on Jul 2nd, 2005, 6:16pm on 07/02/05 at 17:58:29, Jonny wrote:
I did a couple of times when they first started. Learned quickly. B |
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Title: Re: suffered a decade without knowing its name... Post by BobG on Jul 2nd, 2005, 7:11pm Hello again Sourdough, Sorry I had to interrupt the conversation we started yesterday evening. From your quiz results I think you may have more than one problem going on. Do the pains in your face/eye start before the neck pain? If yes, when the face/eye pain starts do you hold your head/neck in an unusual position, you know, like trying to find the most comfortable position to relieve the face/eye pain? You do have some symptoms of cluster headaches and some symptoms of something else. Like the others say, a visit to a doctors is a must at this time. And, of course you can stick around here. We don't want you hurting and what you may learn may be of help to someone else. Let us know. |
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Title: Re: suffered a decade without knowing its name... Post by AussieBrian on Jul 2nd, 2005, 7:43pm And don't go feeling guilty that it's not CH - I wouldn't wish this on a politician! Nothing would give us more joy than to say "Get away from here, you CH-free interloper!" In the meantime, stick around. Information is your best weapon. |
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Title: Re: suffered a decade without knowing its name... Post by SourdoughStomper on Jul 2nd, 2005, 8:58pm Quote:
It always starts in my neck. I'm sure you very familiar with those two... tendons? (or whatever they are} on each side of back of the neck. It is that tendon(?) on the right side that starts aching and tightening up. Followed by the side of my head aching, and then my right eye watering. And if you truly cannot lay down while having one of these things, then... yikes! :o Makes my "owies" look like a cake walk. Still, I'll see what I can do doctor-wise on Tuesday (we'll be down in Skagway, Alaska for the 4th). |
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Title: Re: suffered a decade without knowing its name... Post by Grandma_Sweet_Boy on Jul 2nd, 2005, 9:05pm Hi there from another Canadian. Check your PM's when you get a minute - top right of the message board. Carol |
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Title: Re: suffered a decade without knowing its name... Post by cazman on Jul 5th, 2005, 12:50pm hi sour dough and sad to say welcome , the laying down thing i can and do force myself to lay still ive done it at least to a k7 with ice on my neck heat dont work for me makes it worse , eric made a good point thou we are all different in our pain nobody is alike mabey similar but thats it mine starts in the neck and ends in my right side of my head feeling like something is trying to bore out of my head from the inside out. but as everyone here has said you must get to a doctor asap and get to the bottom of what it is , if not for your self for you kids dont screw around thinking about it head pain is nothing to fool with or wait on and please fallow up with us and let us know the out come we will be here for ya. best wishes ERIC T |
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Title: Re: suffered a decade without knowing its name... Post by Topical on Jul 11th, 2005, 1:47am Here's a Kip10 HA for me.... I lay down usually during the attack. I don't stay still and usually thrash around. Total frustration, I get up and sit in a chair, rocking rapidly saying oww, oww, oww....collapse on the floor crying, more thrashing. "why me? why me?" Get up and back to the bed thrashing. Hold my head under a cold shower. Turn on the fan and lay down on the bed thrashing again. Hyperventalation. More screaming, start to calm down. Hopefully it then goes away, otherwise repeat the paragragh. I think you do need to see a doctor who specializes in headaches. A general practitioner will not be of much help other than referring you to an expert. Lots of links for headaches: http://www.clusterheadaches.com/links.html#other Take this quiz, it is a bit more extensive: http://www.headachecare.com/selfeval.htm Take care and get a professional involved. Let us know what happens as we can help out others. |
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Title: Re: suffered a decade without knowing its name... Post by paul_pero on Jul 14th, 2005, 8:17am Quote:
You forgot to bang your head on floor, on walls and then bash temple with both hands. Mostly it doesn;t help, but I always get urge to try and kill the pain somehow. I havn't been able to lie still when in full swing. Anyhow stay and keep us informed. And hope you get some relief soon. Paul |
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Title: Re: suffered a decade without knowing its name... Post by SourdoughStomper on Jul 14th, 2005, 10:51pm [quote author=Topical Take this quiz, it is a bit more extensive: http://www.headachecare.com/selfeval.htm Take care and get a professional involved. Let us know what happens as we can help out others.[/quote] According to this quiz, it still says cluster headaches. It sure is bizarre anyway. I have cluster-esque symptoms, but I don't think it as severe as you folks. You had a pain scale, 1-10. You describe your pains as 8+. I have given birth 3 times, and I have had gallstones. That was pure agony. I was sobbing on the floor with that, wanting someone to come heavily morphine me up or something. I classified that as 8. These neckaches/headaches are not that bad. I do not sob on the floor. I think the pain for them is around 5-6. I still intend to go to the doc. I pretty much have to go into a walk in clinic with a GP, I have little choice. I don't even know if there is a neckache specialist around. And if there was, he'd want a referral. It's worth a shot anyhow. Sometimes I think I ought to go to my chiropractor and ask her opinion. I've told her about these pains. She might have an idea. |
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