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Title: I Think I Found It! Post by meanshark on Jul 31st, 2005, 1:50am I've only been struggling with these headaches for about a year now. I'm only 33 years old, have a beautiful 2 year old son and lovely wife. My life could not be better. But of course these headaches started out of the blue. I never had anything like these. I am going to a neuologist and she thinks I am having eposodic migraines. I have been reading all about migraines, going to migraine websites. But It never seemed right. I found this site tonight. And all I can say is WOW. This is me. I have Cluster headaches and didn't know it. I had to show my wife this place so she would understand the pain I am going through. Why I would sometimes (not out of anger) tell her to leave me alone. I plan on sticking around here a while. |
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Title: Re: I Think I Found It! Post by LeLimey on Jul 31st, 2005, 5:45am Hello and welcome! I'm sorry you are suffering but I'm glad you have found us, we can help you get a proper diagnosis! Can you describe your symptoms a bit more for us? How long your attack lasts? What happens during an attack for you? What meds you are trying? Does anything seem to help like cold or heat? Take the cluster quiz on the left. There are many conditions that mimic clusters but have different meds and will not respond to the same treatments. I want you to be 100% certain of what you have in case with a bit of luck, you have something that will respond to a specific med with an almost failsafe accuracy. (I'm keeping my fingers crossed for you!) Obviously I want you to get the best quality of life you can so I want you to be on absolutely the best meds combo possible. When you have a small child, and I do too! ( a 3 yr old for me!) you don't want to miss an hour, they grow too fast and I begrudge every hour you are missing due to being in pain. I'm looking forward to hearing from you again. Rest assured there is alot we can and will do to help you okay?! Take care and hug that baby for me! Helen |
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Title: Re: I Think I Found It! Post by RichardN on Jul 31st, 2005, 6:24am Welcome to Clusterville Meanshark . . . .and ditto to what Helen said. Do take the quiz and let us know how you did, along with your specific symptoms. My wife found this site for me in 2/02, after a year of tests (MRI,CTs), mis-diagnosis and non-working meds. By the time I got here, I was having 6-8 attacks a day (KIP 5-9) and sometimes 3-5 per night. This place gave me a name-for-the-pain and the means to combat the bastard. It can be a little slow arround here on the weekends, but reply with the above info, and there are those here who can guide you in the right direction if it's NOT clusters (we hope), and bunches of supporting lunatics to help you along if it is . . . . from people who truly know your pain. Be Safe, PFDANs Richard |
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Title: Re: I Think I Found It! Post by burnt-toast on Jul 31st, 2005, 8:27am Even though symptoms of Clusters are fairly specific, getting a proper diagnosis can be difficult. I've been surprised by the number of Docs. that are unfamiliar with the disease. My wife actually diagnosed me after two years of testing and improper treatment by an Internal Med. Doc. and a Neurologist. She gathered the information (that fit my headaches to the letter) and we took it with us to an appointment. The CH information we tried to share with these two doctors just pissed them off. They felt I shouldn't be diagnosing myself off the Internet . After that, we decided to seek help from other neurologists - after describing my symptoms/tests to a neurologist at a headache clinic for just 15 minutes - The neurologist stopped me - informed me I had Clusters - took me off all of the useless crap (mostly pain meds.) I was on, and actually helped treat my condition. As LeLimley and RichardN have already pointed out it would be helpful if you could describe your symptoms. Folks here will help in any way possible. Best Wishes Tom |
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Title: Re: I Think I Found It! Post by E-Double on Jul 31st, 2005, 8:51am Hi there and welcome to the nut house ;) My wife found this place after my "allergies" went heywire last June. I had been dealing with episodes 2x a yr for 9 years that went form only @ night to throughout the day. Soon after...a matter of days I was diagnosed properly. Stick around and gather as much info as possible. There is a collective millenia of knowledge regarding the BEAST here and you will surely learn how to live with it. I sure as hell hope this is not what you have but if it is you are HOME!!! There are several headache that present themselves in similar manner yet differ in responsiveness to medications and differ in duration. RESEARCH RESEARCH RESEARCH!!!!!!! Please describe your exact symptoms so that we may guide you regardless of what they are deemed to be. and KEEP A HA journal or chart!!! This will provide a story to your doctor and also help in the diagnosis or for that matter obtaining a proper diagnosis (hopefully) Best wishes, Eric |
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Title: Re: I Think I Found It! Post by meanshark on Jul 31st, 2005, 9:30pm Well, I tell ya my headaches always start on the left side of my head, and ALWAYS behind my eye. From that point it seems to run (and I can almost feel the blood running) over my head and around my temple and down my neck, which always cramps up. At this which I alway found unusual to most migrain sufferes I could not sit still. I have to get up, pace and walk and keep moving. The thing that struck me the most was seeing people write about hitting their head against the wall because they were in pain. I've done this. I've pressed my eye so hard sometimes I'm surprised I haven't popped it out. The strange thing is mine really will hit me day or night. They will wake out of a deep sleep, or they will, hit at work. The I will go about a week without any. Right now I am taking 150mg topamax, 100mg zolof, and to 10mg maxalt (right now the maxalt is not working anymore) I had to go to the Hospital the other day for the worst attack so far. |
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Title: Re: I Think I Found It! Post by paul_pero on Aug 1st, 2005, 6:39am Hi meanshark, Welcome to the site. Read as much info as you can around here. Have you taken the cluster quiz on the left? The pain you suffer sounds a lot like mine. My neuro says that this is the only HA he knows of where the sufferer has to be on the move whilst in pain. I get my pain for 4-6 weeks. I then get PF breaks of anywere up to 18 months before it comes back. I've had this for 14 yrs. But before I diagnose you make sure you find out more about CH and more about your own headaches. You say that you have had them for 1 year now and that you get 1 week without them. Does that mean you get 1 every week, or do you have breaks os 1 week inbetween clusters? sorry if I didn't understand. Paul |
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Title: Re: I Think I Found It! Post by burnt-toast on Aug 1st, 2005, 12:33pm Take information you find on the site along to your next neuro. visit. Use it to help discuss your symptoms with the Doc. The H/A journal that E-Double mentioned is going to be helpful as well. Good Luck Tom |
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Title: Re: I Think I Found It! Post by Kirk on Aug 1st, 2005, 3:34pm Hi ya Meanshark. Sorry to see ya here. A lot of us have found that O2 is a great abortive if done right. There is some info on it to the left. Hang in there [smiley=smokin.gif] |
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Title: Re: I Think I Found It! Post by meanshark on Aug 1st, 2005, 5:33pm Hey, Yeah, I took the quiz, and unfortunaly I scored 100% on it. It is scary. What I mean about getting a break. Usually I will go a week or two without a headache. Then I will get one. But If I get one, I'm sure to get one the next day, then the next day, then the next day, and so on for a week. Then I will get another week break. |
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Title: Re: I Think I Found It! Post by E-Double on Aug 1st, 2005, 7:20pm GET YOUR REAR_END TO A DOCTOR!!! Not all treatments work for everyone and being that you have no meds @ this point nor have you been officially diagnosed, there are a few things that might be able to give you some relief non-medicinally. Some tricks that I used to use and sometimes still do are: *Wrapping a bandana tightly around my skull (be careful) *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. 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. If you do recieve a diagnosis,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 I have recently been using Zyprexa as an abortive and have found it to work (for me) as fast as Imitrex and without the "hangover" http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1120904753 Best wishes, good luck & stay as positive as you can!!!! Eric |
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Title: Re: I Think I Found It! Post by marycav on Aug 2nd, 2005, 10:30am I'm new to this site as well. I've been suffering with these monsters for 23 years now. I don't think I can take it much longer. Just ready to give up and let them win. How do you really know when enough is enough! |
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Title: Re: I Think I Found It! Post by nani on Aug 2nd, 2005, 10:57am Give up!?!? You must NEVER give up. CH sucks, no doubt about it. But giving up is letting it win. Now that you've found us, Mary, use us as your life line. We've got tons of info and even more support. Hang in there.... pain free wishes, nani |
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Title: Re: I Think I Found It! Post by marycav on Aug 2nd, 2005, 11:08am Nani, I'm headed to the doctor in about 2 hours. Not sure what to get to try and break this cycle. They know very little about CH's. Trying to do my homework before I head there. Any suggestions. I've tried several things in the past. None have work thus far. Seems like, just like in childbirth...you forget the pain after there gone but when they come back...there even worse than you remember. Done! Mary |
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Title: Re: I Think I Found It! Post by nani on Aug 2nd, 2005, 11:15am Mary...I have so many suggestions!!! But we only have 2 hours so: First- print out this page and take it with you: http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm Then, print out this page and take it with you: http://www.brightok.net/~mnjday/chtherapy.pdf I assume you have already been diagnosed. If you haven't yet...start keeping a headache diary. Record time of day, duration, intensity, etc. There is a promising new alternative that's being tested here, also. Read all the associated links. I don't think you'll have time to do so before the appointment, but get back to it. Let us know. pain free wishes, nani DOH! I forgot the link: http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1110584362 |
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Title: Re: I Think I Found It! Post by Sandy_C on Aug 2nd, 2005, 12:08pm on 08/02/05 at 10:30:15, marycav wrote:
Mary, honey, you've now got us. We will NOT let you give up. These Ch will NOT win. The beast may hang around for a long time but it will be stopped some day, I am positive of this. All you need to do now is to hang in there, fight it, stay with us. The people on this board have been exactly where you are. They can give you advice, some of which may work for you, some may not. Stick around, you wil find that this place if your Godsend. It was for me. |
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Title: Re: I Think I Found It! Post by Sandy_C on Aug 2nd, 2005, 12:09pm on 08/02/05 at 10:30:15, marycav wrote:
Enough? NEVER! |
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