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Title: So I am not the only one! Post by sticky30 on Jun 29th, 2005, 1:59pm Hi! My name is Tanya. I am from Chickasha, Oklahoma and I have been suffering from CH for about 3 years. When they first came on the Doctor prescribed me almost every none narcotic and that still didn't help. I also went through a very deep depression. Looking back to that first year, I have no idea why my husband stayed with me. He tries to understand but I do not think anyone can unless they actually have an attack. I do not take any prescriptions because I have not found any that actually helps. I basically depend on Excedrin Migraine and I just deal with each night. I am getting use to only a couple of hours sleep. To tell you the truth I am very tired. I am ready for the episodes to be over. I am in the fourth week and they don't seem to be getting any better. I am thinking about calling the Doctor but I really don't want to go because he will just prescribed something else that doesn't work. Anyways, I am very glad I found this site. I really thought nobody else understood. It is comforting knowing that I am not the only one. Tanya Robeson |
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Title: Re: So I am not the only one! Post by unsolved1 on Jun 29th, 2005, 2:25pm Welcome Tanya ! Stick around and read the boards, you just might find something that will help. Goodluck PF Wishes Unsolved |
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Title: Re: So I am not the only one! Post by E-Double on Jun 29th, 2005, 2:49pm 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!!! Ask for a script and if needed FIGHT fOR Oxygen... http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm Educate your doctors!!! 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 8-10 times.....I have slept through the night since August.....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: So I am not the only one! Post by sticky30 on Jun 29th, 2005, 3:11pm Thanks for all of the information. I keep thinking they will go away but they are still there. I have noticed this year that I am getting more of them. The first year it was two during the day and one at night. Now I am getting 2 a day and 4 to 5 a night. Over the counter medicine is not helping. During the first year the Doc prescribed lauratabs(if that is the correct spelling) and they seemed to work however, I noticed I was taking them when I got stressed out instead of when the headache was coming on. It scared me so I threw them away. I tried Replax and they seemed to help at first but it took 30 minutes...so I am not sure if it actually did anything. I heard about the oxygen. I am going to push that idea to my Doc hopefully he will listen. I need to get some sleep. Tanya |
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Title: Re: So I am not the only one! Post by marlinsfan on Jun 29th, 2005, 3:55pm Ditto to what E-double said. O2 is the best. Melatonin helps me sleep, you can get that at walgreens or your supermarket, in the vitamin section. I take 3 little pills every night (9 mgs total), I only get one headache a night now, mostly at 5 am or so after the melatonin wears off. I'm getting 6 hrs of sleep more or less! I'm in the 9th week of my cycle. Prepare yourself mentally for dealing with the beast for a few more weeks. Don't give up! Really read carefully the e-double articles. They helped me a lot. Thanks to them I got transitional meds, and a script for Oxygen. I already had trex. Oxygen, for me, works really good. The pain dies in 10-12 minutes. When I wake up with a headache and start sucking on that O2, the headache DOES NOT GET WORSE. Go get it. PF Wishes to you. Jose |
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Title: Re: So I am not the only one! Post by burnt-toast on Jun 29th, 2005, 4:18pm No you are definitely not the only one. My early experience with narcotics/pain killers was similar - no help. Get a lot of meds/treatement information from the site and start working with you doc. - preferrably neurologist to find some some treatments that will at least help you control these things. Leaving them untreated is most likely causing you unnessary pain. Good Luck Tom |
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Title: Re: So I am not the only one! Post by Gator on Jun 30th, 2005, 9:14am Welcome Okie! You are definitely not alone. There are a few more Okies here as well. I am from Stillwater, myself. Aprilbee from OKC, King of Pain from Tulsa, forgetfulnot also from the Tulsa area and I know there are others, but my memory fails me. Click on the Member Map link above to see more. There is a ton of good information on this site. Start with the links on the left and then dive into the various message boards. Print out info and take it to your doctor. Most doctors are not familiar with treating CH. Even a lot of neurologists are fairly clueless. That's why you have to take it upon yourself to be thoroughly knowledgeable about this disease and it's treatment. Here's where you'll get the information and support you need. O.U.C.H. (The Organization for Understanding Cluster Headaches) is holding it's annual convention in Dallas July 15 - 17. You should really consider sliding down that weekend. We'd love to meet you. There's no better feeling than meeting someone who understands what you are going through. Check out the following links for info about DalCon. http://www.clusterheadaches.org/conventions/index.htm http://www.brightok.net/~mnjday/dalcon05/2005agenda.pdf Again, welcome to our little corner of the web and check your messages. |
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Title: Re: So I am not the only one! Post by birdman on Jun 30th, 2005, 9:55am Tanya, listen to the information you get on this site. It has been a complete turnaround in my life. I have been suffering for 19 years and never thought there were any answers. Explore this site and hope you get pain free days/nights ahead of you. |
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Title: Re: So I am not the only one! Post by Kim Y. on Jun 30th, 2005, 12:09pm Welcome Tanya, Sorry that you had to seek us out but am glad that you found us. E-Double has posted a lot of good information. Take some of it with you to the doctor. Educate him on what you need. Take care PF Wishes............Kim |
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Title: Re: So I am not the only one! Post by kimmeesue on Jun 30th, 2005, 2:02pm Hi Tanya...I'm an OKIE by proxie...two of my kids were born in Tulsa. Now I'm your neighbor to the north. Welcome aboard, this place can be a lifesaver. The support is phenominal. Ditto on the melatonin. It is the only thing that has helped me consistently by stopping the nighttime hits. I take 12 mg, others take less. I started at three and worked my way up. Have been at this dosage for several months and not one nighttime hit. Best wishes. Kim |
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