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Judge_Smails
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Hello All
« Reply #100 on: Mar 28th, 2005, 11:21am » |
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Just found the site and what a relief it is. I'm 34 and if you can believe it I've been getting CH's since I was 4 years old. I just started another cycle and found out that they no longer make the medication that I had been taking for the past 10 years (Sansert). I'm getting by with Imitrex and have a Dr appointment tomorrow to try to find a new preventative medication. Just glad to know that there are other people out there that know what I'm going through.
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LeLimey
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Re: WELCOME!
« Reply #101 on: Mar 28th, 2005, 11:28am » |
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Hello judgie!
If you get time before your dr's appt, read read read! There is so much stuff here you will be able to discuss with him to get whats right for you. In particular look at the O2 info and also the kudzu threads.
Let us know how you get on okay?!
Helen
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Sean_C
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on Mar 28th, 2005, 11:21am, Judge_Smails wrote:| Just found the site and what a relief it is. I'm 34 and if you can believe it I've been getting CH's since I was 4 years old. I just started another cycle and found out that they no longer make the medication that I had been taking for the past 10 years (Sansert). I'm getting by with Imitrex and have a Dr appointment tomorrow to try to find a new preventative medication. Just glad to know that there are other people out there that know what I'm going through. |
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I had luck with Sancert too.
Sean.........................
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Judge_Smails
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Re: WELCOME!
« Reply #103 on: Mar 28th, 2005, 2:32pm » |
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Thanks, I'm going to run to the health store after work to pick up some kudzu - even if it helps a little bit that's better than nothing!
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Redd
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Re: WELCOME!
« Reply #104 on: Mar 28th, 2005, 8:46pm » |
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Ummmm
There is another avenue you may want to read up on as well
www.clusterbusters.com
It's always up to the person, but the anicdotal evidence of effectiveness is at least worth the read.
Harvard Medical is very interested in this information as well.
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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Judge_Smails
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Re: WELCOME!
« Reply #105 on: Mar 29th, 2005, 2:42pm » |
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Well, picked up some kudzu yesterday so we'll see if that helps. Also had a Dr's appointment today and got a perscription for Prednisone and O2 so with any luck that will help me ride out this cycle. Thanks for all of the info!
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LeLimey
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Re: WELCOME!
« Reply #106 on: Mar 29th, 2005, 2:48pm » |
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Youre welcome, There is a kudzu survey going on.. will you enter your results after your first week please? Have you got anything to take AFTER the pred? That is usually used as a taper while you are building up on something else such as verapamil for instance. On its own the danger is the CH will come right back when you taper off. O2 is fantastic. Love it to bits. Have you got the non rebreather mask to go with it? Thats essential or it won't work for you. Let us know how you get on again please!
Regards
Helen
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Judge_Smails
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Re: WELCOME!
« Reply #107 on: Mar 29th, 2005, 3:43pm » |
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I guess I'm lucky, my cycle only lasts for 4-5 weeks (3-4 CH per day), then disappears for 1.5/2 years. So I'm a week into the cycle and the Dr said the Pred was 3 weeks worth, so if all goes well I should just about make it to the end - that's if the Pred works.
It's so hard going to a new med, it's the whole trial and error thing, and in the meantime you're suffering. I've been trying Topamax for the past 4 days and it hasn't been helping so hopefully the Pred will do the trick.
I'll be more than happy to add to the kudzu survey, although I'm not sure if the kudzu or the Pred will be effecting my symptoms.
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vig
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Re: WELCOME!
« Reply #108 on: Mar 29th, 2005, 8:08pm » |
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and there ARE pharmacists that will still make Sansert, but you have to look hard.
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never, Never, NEVER quit. -Winston Churchill
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keith
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Re: WELCOME!
« Reply #109 on: Apr 5th, 2005, 3:53pm » |
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Well, just registered, so hello friends and fellow suffers. It is good to be talking (typing) even if noone is hearing. Just to know there are so many out there who can understand. I guess there is nothing like CH to bring home the truth that misery loves company. Here is my short history:
Started having CH about 12 years ago. I just sweated it out and did not really get properlly diagnosed for about 4 years. I finally got referred to a neruologist who positively identified me. I was relieved and then shocked to hear him say, "we know how to label it - we know the symptoms, but we don't really know what causes it, what it is, or how to cure it." I did not think there was such a thing in the modern medical world except rate diseases. It is still strange to think they understand so little about the cause of CH and so little about the cure, though I have learned much from this site about possible treatments. I am (please, God) just coming out of a cycle I think and I owe some peace to this site. I read and tried the www one week into my cycle and it seems to have worked (I have a bottle of water right beside me now to make sure I am OK). It was difficult being by the bathroom all the time for two days, but a small price to pay compared to meeting the Demon.
Question: anyone know how long I should keep drinking the water? I still have a few shadows, but seem to be mostly free. I am, of course, afraid to stop and have CH come back suddenly.
Question: I am struck reading the site about the wide use of 02 as an abortive. I had not heard of that, nor had any doctors mentioned it to me. What is the easiest way to get a set-up. I would certainly like to have one handy when the Demon comes again.
Guess I will stop now. This is probably a lot for anyone to read. I am curious about how this group investigates potential causes or atributes that we may have in common that could lead to more understanding. For example, for many years I thought that the CH might be related to a head injury I sustained about 1 year before they began. I noticed that in the medical description of the site this connection has been explored but was not conclusive. How many of us have had such injuries?
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nani
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Re: WELCOME!
« Reply #110 on: Apr 5th, 2005, 7:53pm » |
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Welcome keith and I'm sorry you're here. You'll find oxygen info over there on the left. Print it and take it to your doctor. I don't know about WWW, never tried it. Look around the site here and gather info about other treatments also. There is one "study" that some of us are involved in that is proving to be rather promising. Here is a link to some threads about it. Read them all... there's a lot of info and it sometimes gets silly, but it's worth reading. Good luck and pain free wishes to you,
nani
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action= display;num=1110584362
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keith
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Re: WELCOME!
« Reply #111 on: Apr 8th, 2005, 4:57pm » |
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Thanks for the welcome Nani. I thought I was coming out of the cycle, but just had a KIP 9+ yesterday. Now I have started the Predisone and gotten some Imitrex injection medicine to abort if (when) the beast comes tonight. Still hoping I am over the worse....
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samsara
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Re: WELCOME!
« Reply #112 on: Apr 9th, 2005, 1:12pm » |
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Hello everyone...
I was diagnosed with clusters over a year ago after suffering for years. I won't go into the long story of getting to a diagnosis, but after I was diagnosed I did a ton of research and found this forum, joined but never posted. I was perscribed prednisone to break the cycle I was in at the time I was diagnosed, and verapimil to keep the beast away, but dropped it all immediately when I found http://www.clusterbusters.com/ as I am a huge advocate of treating the body with natures medicines. And I have a funny little story about that, but I will share it another time.
I always found my headaches to be annoying, and sometimes even distressing but I have never had a debilitating one. I always wondered if I was just lucky, had a high pain tolerance or if so many others were just whiners. (no offense intended)
Well, yesterday I had the mother of all clusters and I can say I have a new found respect for all of you.
Historically my clusters have followed the typical pattern... one around noon, and then if that one is bad I will start having them at about 8am and 8pm like clockwork. I don't know what happened yesterday, but I woke up with a shadow and had a (for me) full blown cluster by ten am... very annoying and distracting. Well, it never started abating, and by noon I was in a whole new territory. At one I realized this was far worse than my previous most painful experience of childbirth. By 1:30 I was beyond myself, and my husband came to the rescue with .3g.... my pain dropped from a 9-10 to a 6-7 by 2:40, and then by 3:30 it was completely gone. I cried I was so relieved, and I could not believe how simply wonderful it felt to feel nothing at all.
Anyway, I have never posted here but I felt that after that experience I needed to share with you all my respect, understanding and comraderie. I am almost moved to tears now just thinking about yesterday, and I am counting my blessings that the earth has given those of us who choose such a wonderful treatment option.
To whoever started this forum... thank you, thank you, thank you!!
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nani
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Re: WELCOME!
« Reply #113 on: Apr 9th, 2005, 2:49pm » |
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Hi samsara (my granddaughter's name's are Samantha and Sara  )
DJ started this site and we are all very grateful to him for that. I'm sorry you're having a bad time. My CH has been kind of erratic like yours. Also a long story.
You have found a place with tons of info and support. Take advantage of it. Pain free wishes, nani
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samsara
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Re: WELCOME!
« Reply #114 on: Apr 9th, 2005, 5:28pm » |
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Thank you nani..
one thing I have thought of today... is there a place where people post their histories/stories? I would be interested to read about others with this disorder.
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nani
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Re: WELCOME!
« Reply #115 on: Apr 9th, 2005, 5:42pm » |
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You know, that sounds like a great thread to start on the General board. There is the getting to know you board, but not everyone posts there first. There really isn't anywhere else (except some of the guest book posts) specifically for our stories. Why don't you start one?
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samsara
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Re: WELCOME!
« Reply #116 on: Apr 9th, 2005, 7:24pm » |
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I think I will do just that.. altho it may have to wait until tomorrow since I will be babysitting my three nephews in about 20 minutes... add that to my two and a neighbor friend hanging out and I have my hands full!
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steviejp
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Re: WELCOME!
« Reply #117 on: Apr 19th, 2005, 6:17pm » |
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Thanks for a great site !
Have suffered from what I have discovered (thanks to this site) to be the cluster headaches for around 15 years. It was so much of a relief to find what I had been suffering with.
Have been treated for various things, including sinus problems for years. As you can guess, with no luck ...
Soon as I found this site I printed out the the basic symtoms, made an appointment with Doc's, and presented him with the evidence, and he prescribed imigran injections, which work great.
Many thanks to all who make this site such a great reference for myself and fellow sufferers ...
I just wondered if if these headaches can be linked to any neck or upper spinal injury, as I have suffered more and more attacks since having such an injury, and the treatment of this injury mainly after physio on the affected area ?
Again many thanks, and keep up the good work !!!
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da_massa
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Re: WELCOME!
« Reply #118 on: Apr 25th, 2005, 5:09pm » |
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da_massa out of Austin, TX-
yep, what they say is true, everything down here is bigger and I guess the headaches are no exception. I've "dealt" with this horror and have been successful until recently... seems like that's a story a lot of people are familiar with. It almost seems like the headaches are changing on me. At first they were the typical 90 minute helll on earth, but now the residual pain is lasting for hours and hours after the intense part. I thought I had a grip on these, or at least as much as one can, but it seems to slowly be taking over my life. I'm actually considering quitting my job as it is physical in nature and these headaches just leave me worthless. Has anybody experienced prolonged throbbing pain after the attacks? What can be done for them? I've tried valium and it doesn't seem to do anything. Is it possible to suffer from both cluster and regular migraines at once?
I wish this could be more positive being my first post but its been tough just hanging in here as of late.
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Katya_moonchild
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Re: WELCOME!
« Reply #119 on: May 4th, 2005, 6:34pm » |
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Hello, everyone! My dad asked me to look at this site because he's been having these headaches for about a year now. He says that everything that is talked about here fits him to a T. I just wanted to say Thanks for all the great info and I hope he can get some better help now that he has more of an idea what this is. Before he started getting these headaches a year ago, he had rarely, if ever, even had a little stress headache. I have dealt with Migraines since I was about 16 and my youngest son gets them and can't go to school sometimes. My sister gets them too, but Dad's are the worst. He has the highest frequency and by far the worst pain. He is a double above the knee amputee as well, so walking and such isn't really an option for him, but I have gone over there and watched him pull himself from his bed to his chair and back and moaning and crying and shoving his palm into his eye. It's horrible and I really hope that by using the information he has found on this site and showing it to his doctor he can find some relief.
*huggles*
Kikat
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BobG
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Re: WELCOME!
« Reply #120 on: May 7th, 2005, 9:24am » |
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Hello Katya_moonchild.....interesting name.
*huggles* back to you for coming here for your father. Read all you can and print the best of it.
Can you get your father to come and introduce himself?
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Larry
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Re: WELCOME!
« Reply #121 on: May 8th, 2005, 5:59am » |
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Hi Everyone,
I am in week 3 of an attack. Things are not going well at all. The doc prescribed verapamil and RELPAX. I have had these for 30 years and they never get easier to accept. I got the above meds at week 5 of a cycle last fall and it seemed to zap them away,,, but now,,,,the verapamil is not doing anything that I can tell and I had to quit taking the RELPAX because it was causing my moderate to severe chest pains. I am 47 yo and am HAPPY to have found you all. It is about 3:00 AM here in AZ and last nite was the first nite without the RELPAX. My headache has been bouncing between a 4 and a 6,,,, and at times going to 8 or 9. I am so very tired of this. I just don't have the fight in me anymore. I normally only have a bout in the fall and on the left side. This one is on the right side and the attacks are sudden and acute. Thanks for listening to me. The most succesful things I do are relaxation,,, oxygen and ice.
Larry
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dis
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Re: WELCOME!
« Reply #122 on: May 10th, 2005, 8:52pm » |
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Hi, I am in the middle of a ch episode...have been pain free for five years. Just saw a neurologist who tried to persuade me that my headaches weren't cluster headaches. Help. I need a good doctor in the Boston area. Does anyone have a suggestion?
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alchemy
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Re: WELCOME!
« Reply #123 on: May 11th, 2005, 6:04am » |
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I just joined this site today. I wish I had known about it years ago. I'm an extreme chronic clusterhead. I'm in the 5th month of a 5 cluster a day cycle. I'm totally worn out. I feel the most sorry for my family. The docs are sending me to a surgeon, any info on that ?
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LeLimey
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Re: WELCOME!
« Reply #124 on: May 11th, 2005, 9:14am » |
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Hi Larry what dose of verap are you on? there are alot of us here who take it and we are all on different doses.. you might need to talk to your doc about increasing. Check out the other meds available and read up on the o2 info to discuss that with your doc too. Personally I can't recommend it enough, its a life saver.
Let us know how you are getting on though and please please please ask as many questions as you like. There is a wealth of info here so use it!
Take care
Helen
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