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Evelynj
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Salutations
« on: Apr 20th, 2007, 9:11am » |
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I was so pleased to come across this site. I have been reading so many post and absorbing the information.
I am Female 52 yrs. young  I had these headaches for the first time about 15 yrs ago. I suffered everynight for several wks. at this time did not see a Dr. they went away, did not have them again for over a yr. then BAM they were back, same time of yr. and would hit same time in the evening. Did go to the Dr. at this time and he said CLUSTER HEADACHES. Nothing more was done. They went away after a few wks and I have not had them since till 2 weeks ago,, only this time they come on about 1 am waking me right out sleep, THAT HORRIBLE PAIN in my left eye, sharp stabbing pain. I manage to pull myself out of bed and get a baggie of ice and just jab into my eye this seems to stop the pain within about 30 mins. I am so afraid one day the ice will not work and I don't think I could take that pain for any substained time. I am also afraid to go to bed anymore in fear of an attack, last night I took my Supply of Ice with me, made my bags of Ice up and put them in a small cooler next to the bed. I did discuss these with my new Dr. and she is fully understanding. She mentioned an injection and H2O but at the time this was 2 wks ago I had hoped they would stop and the ice does help. I read about injections and what it is,, Imtraix ?? Question : does it make u sleepy, side effects ?? I do not want to be woosy, I have a daughter on dialysis I do here at home and must be awake to hear any alarms as they do occur a lot. She is also on a transplant waiting list and have hear the phone, that is ONE call we can miss. I read Stress assist in bringing them on, have had a great deal of Stress the past 25 yrs. she been chronically ill since birth, been through 2 transplants and so much. Still at this time it's not AS STRESSFUL as it can be and I don't understand what brings them on. It's always been THIS time of yr. though the attacks I've had over the yrs. Can Allergies effect them ?? I've never had allergies that I know of,, over all in good health except I do have glucoma with I take drops for. Oh and my Dr. mention a Beta Blocker ???? I am going to call her today, it's been over 2 wks and they are still coming, if I can remember last 2 times they last a few wks. They are scary that's for sure.
Again so glad I had all this information available to me. I am so sorry for anyone who suffers these horrible headaches.
Many Thanks.
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chrisw
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Re: Salutations
« Reply #1 on: Apr 20th, 2007, 9:27am » |
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Evelyn,
I will try to answer some questions for you to the best of my ability,
Imitrex injections do have side effects, but drowsiness has never been one of them for me. The main side effect of it is a rapid heart rate, and feeling shaky for a while afterward. If anyting, I think they may inhibit sleep a little instead of the other way around.
Stress can be a contributing factor, but usually that is not the trigger during a night attack. They have more to do with your internal clock. Allergies are not the cause, per se, many people get them eveery spring for 20 yrs, then all of the sudden start getting them in the fall or winter. I think it has something to do with internal rythymns.
You should ask your dr about setting you up with an O2 tank. It is a recognized treatment for clusters, it works amazing ly well for sooo many of us. Save the imitrex for the worst of the worst, and you will feel better knowing that you are using a natural remedy rather than a very strong drug like imitrex. Besides, you cant use trex injections more than twice a day, and they dont tend to last for more than two hrs or so for most of us.
Good luck, talk to the doc about o2. Its relaltively cheap, and easy, and it works very well as an abortive, maybe your doc will discuss some kind of preventative treatment also.
Chrisw
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Guiseppi
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Re: Salutations
« Reply #2 on: Apr 20th, 2007, 12:19pm » |
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Hey welcome to the board. Stress is funny. For many people, they try and stay stressed as much as possible because as soon as they relax they get hit. Others, like me, stress will bring on a headache when I am "on" cycle, but will not bring on a cycle.
Try chugging an energy drink such as Monster or Red Bull, at the first sign of a headache. Many can abort the head ache with just that. Imitrex doesn't make me woozy, just gives you this wild" snakes running up my back" feeling for 3-5 minutes. No other side effects for me and is a great abortive for me when all else has failed. Use the injectables, the pills are not very effective for us as the head ache ramps up too fast for the pills to help.
My cycles go 3 to 8 months so I use a preventative, lithium, when on cycle to lessen the number of hits. I don't know if that would work for such a short cycle as you experience as it takes lithium about 2 weeks to build up in my system.
I would ask your doc to put you on a 2 week prednisone taper, and get oxygen prescribed. Read the link on the left. The critical points are:
A high flow rate, up to 15 litres per minute or LPM
A Non Re Breather mask.
It's important you breathe 100% oxygen, at the first signs of a headache. It will abort the majority of attacks for me.
That's all the ramblings from me for now, you have alot of reading to do, there is just SO MUCH info here for you. Welcome I hope your cycle is a short one!
Guiseppi
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Rosybabe
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Re: Salutations
« Reply #3 on: Apr 20th, 2007, 2:25pm » |
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Hi Evelyn, welcome!
Do not be afraid of taking medications , for most of us it is a lot better to go through the sides effects than having to deal with the pain ..you need to find what works for you. Hope you get to feeling better soon.
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Charlie
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Re: Salutations
« Reply #4 on: Apr 20th, 2007, 6:16pm » |
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Welcome aboard Evelyn but sorry you have to deal with this horror. Lotsa good stuff here mixed in with the silliness. While you are waiting for medical types to help you can try this technique. It worked very well for me:
Dr. Wright’s Circulatory Technique:
I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.
I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.
Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.
This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.
Charlie
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Evelynj
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Re: Salutations
« Reply #5 on: Apr 20th, 2007, 6:25pm » |
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[i][/i][color=Maroon][/color] Many Thanks to each of you. It does help to know I am not alone and this is all not my mind taking over 
I will call the Dr. first thing Mon. it's to late to call now. I am seen at the VA Clinic and my Dr. is very good to me. She did mention the o2, so will ask her. I do realize whatever treatment used has to be FAST acting. I am just thankful the Ice pack is working for me, will be taking my cooler to bed all weekend. 
Thanks again all
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pieface_49
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Re: Salutations
« Reply #6 on: Apr 20th, 2007, 6:58pm » |
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Hello Evelyn,
You have come to the right place for answers. Nothing is better than being prepared when you see your Doctor. Download the CH diary http://www.ouch-us.org/index.shtml and keep a diary. The next time you see your Doctor, give him a pat on the back for leading you in the right direction. Many CH'ers will agree, sometimes the Doctors just don't understand or prefer to categorize CH as something else.
My last cycle started at 7pm and progressed forward an hour about every 10 days. Eventually it was hitting during the early am hours. I would even awaken at the same time the CH would hit with fear and I was not in the midst of a hit. I found it difficult to get to sleep because I knew a hit was eminent. Sleeping almost became non-existent. Something chemically changed and I was able to function without my normal 8 hours of sleep. Just a bit grouchy or grumpy 
Imitrex (Sumatriptan) (known as an abortive) is known to be fairly safe, yet, as with any medication, there are warnings and side effects.
http://www.drugs.com/cdi/imitrex.html
I think your Doc prescribed O2 (oxygen) as an abortive. H2O as you stated is water . The Clustermasx non-rebreather mask is what most will suggest http://myweb.tiscali.co.uk/tritech/index.html
Calcium channel blockers are a preventative medication for CH sufferers. I do not know what was suggested, there are many calcium channel blockers available. Verapamil is common.
http://www.drugs.com/mtm/verapamil.html
Here is some good general information. There is a lot of info available by doing a Google search on "Cluster Headache".
http://www.aafp.org/afp/20050215/717.html
Welcome and hope your cycle ends soon,
Donnie
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testy01
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Re: Salutations
« Reply #7 on: Apr 21st, 2007, 9:52am » |
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Hi Evelynj
There are all kinds of things that may help, some medications and some techniques. For me, Imigran and other tryptans are a nightmare. They only work for about an hour and then the HA is back with compound interest. I've tried several kinds and they all do the same. Your own experience may be better.
In my own case, I take cafergot which is a horrible drug but works. Aside from that, getting thoroughly wet and standing in front of an air-conditioner seems to help a bit as well.
The only good thing about getting a diagnosis of cluster headaches is that you no longer have to worry that you're having a stroke or a brain tumor. That was a great relief to me.
All the best to you, and to your little girl as well. I have a friend on that list and I know how stressful that can be.
Jack
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Callico
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Re: Salutations
« Reply #8 on: Apr 22nd, 2007, 4:03am » |
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Welcome aboard. I know it takes a lot of time to try to digest all of the material here, and a lot of it can be overwhelming if yo don't have a medical background. you are lucky to have a Dr that will work with you on this. Many of us have nothad that kind of experience with the medical field. I hope you will print out some of the information and take it with you to the Dr to help you both work out the course of action you need to take. Someone mentioned a Prednisone taper. that has been effective for some of us in breaking a cycle at least long enough for a preventative to take effect.
Definately look into the O2. Someone also mentioned Red Bull, Monster, etc. They work very well for me if I get to them right away at the beginnings of an attack. On a really bad hit I may have to use a second one. Also strong black coffee helps me a lot, but is slower acting because you cant drink it quickly enough. Red Bull I will slam down in one straight pull. If I drink it normally it does nothing for me.
Hope this makes sense. Sleep deprivation can be a problem.
Jerry
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