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amen
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New and overwhelmed
« on: Nov 6th, 2003, 2:03pm » |
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Hi, I am new to the sight. I have just been diagnosed with CH after about 10 years. I started having them in my early 20's and went through the whole being diagnosed incorrectly ie sinuses, stress, allergies, then I went through a 6 year remission which was wonderful until about 2 weeks ago when I was woke from a dead sleep and thought I was going to die! I knew exactly what it was but it was way more intense than I had ever had in the past. This time the HA have been coming on more frequent, and seem to last longer. My doc sent me for an MRI to rule anything else out. That turned out fine. I am at the beginning stages of trying meds. I have been reading the message board and wonder what I should try first. My HA come about 2-3 a day and usually around bedtime, middle of the night or morning. Never in the middle of the day and always on the right side. My eye turns red and swells and runs. Occasionally I have nausea but not usually. I did get sick this morning when I got to work but I think that was from taking meds on an empty stomach. Any advice would be appreciated.
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vig
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Re: New and overwhelmed
« Reply #1 on: Nov 6th, 2003, 2:08pm » |
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Hi Amen,
I'm glad you found us.
You have a lot of studying to do. There's a ton of good information about CH here. We're all learning and sharing so dig in and ask questions and have fun.
Welcome
-p
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Tiannia
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Re: New and overwhelmed
« Reply #2 on: Nov 6th, 2003, 2:10pm » |
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Welcome to the site. I know how you feel, there are so many meds. I am currently on Imitrex pills only and Inderal at night. I do not think that the inderal is helping, but I'm kind of scared to stop them if they are. One more month to go and I take my doc my "Headache calander/journal" to show the hows and when of my HA's. Then I have to prove to him that clinical research HAS been done on O2 and the use of it.
I wish you luck, there are lonts of people here with great ideas and advise.
Tia
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Roxy
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Re: New and overwhelmed
« Reply #3 on: Nov 6th, 2003, 2:11pm » |
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Did your doctor suggest any type of protocol?
Go click on the 02 button to the left, it's pretty good stuff. Verapamil and trex are standard favorites too. There are also lots of natural treatments that can help to hold you over till you find a medication program that will help you. READ, READ, READ....... 
Sorry they are back for you, and I hope you will find something that will help.
PFDAN,
Tracey
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aprilbee
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Re: New and overwhelmed
« Reply #4 on: Nov 6th, 2003, 2:11pm » |
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Hi Amen, welcome, sorry you had to find us, but you have found the best support group on the planet!!
I take Neurontin as a preventative, some people can't take it, but it stopped my cycle dead in its tracks, I'm an eposodic and my cycle was shortened by a month, you might give it a shot, I also have taken Relpax which works good and Lortab for shadows, Lortab can cause rebounds so I don't use it for major hits, just those ones during the day that don't do much more than annoy...
Research all of the links on the left and inform yourself, that's the best thing to do!! I hope you can find some answers and you have pain free days and nights soon!
April
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thomas
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This worked for me this time - 20 min hot steamy shower 30 min before bed 3-6mg of melatonin 45 mins before bed, 20mg prosac in the am 150mg magnesium in the am, 150mg calcium. Repeat daily. read the archives and the posts, join OUCH and welcome aboad.
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samurai
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Welcome!
I also just recently discovered this site and it has become a second home. The people here understand! There is a lot of information and a lot of options for treatment. The best part is the emotional support. We're here for each other. We're here for you!
Jason
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Mark C
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Re: New and overwhelmed
« Reply #7 on: Nov 6th, 2003, 2:30pm » |
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Howdy,
Sorry you need us, but glad you are here. I will post some links to get you started on your CH PHD! Knowledge is power and there is a lot to learn and an increadible amount of human experience here.
Look
here
here
here
and last but one of my Favorites
here
Good Luck and Welcome again!
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Tara Ann
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Re: New and overwhelmed
« Reply #8 on: Nov 6th, 2003, 3:34pm » |
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SOrry you have this HELL but glad you found us! Tons of support, understanding and INFO! So read read read all the buttons on the left, search the archives (Mark has given you a great start) and ask any questions and VENT as needed! Welcome Aboard
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http://www.myspace.com/taraann77
 
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amen
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Re: New and overwhelmed
« Reply #9 on: Nov 6th, 2003, 3:55pm » |
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Thanks for all of the responses. I am not sure that my Dr. is very familar with CH. He first put me on vicadin. No relief. He gave me some samples of Immitrex and another sample of something similar to Immitrex. No relief. Today we are going to try verapamil. We shall see. I start getting anxious in the evenings, just knowing whats coming. My husband gets frustrated because he can't help me. My 4 children have been handling it pretty well but I feel bad for them.
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BobG
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Re: New and overwhelmed
« Reply #10 on: Nov 6th, 2003, 4:24pm » |
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Was the Imitrex in swallow, snort or inject form?
Don't expect immediate relief with the verapamil. It takes 10 days - 2 weeks to build up in your system.
But, you already knew that didn't you?
Good luck. Hopes it works for you.
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Charlie
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Re: New and overwhelmed
« Reply #11 on: Nov 6th, 2003, 4:34pm » |
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Welcome to our painful end of the spectrum. You'll find pages and pages of good ideas and some interesting ways to deal with this horror. I've been in a 12 year remission but I cannot wipe my memory of the pain. It seems like yesterday.
Your description of your attacks is very much like mine although I usually had 4 or 5 a day. You'll find that almost all of us get them not long after falling asleep and then are awakened and want to kill something. For me this is a sure sign of CH. It can may one dread sleep.
The only drug I used was Inderal which hasn't been effective for many here but it worked for me. Since I was episodic and not very bright, I took it only after the attacks began and thus suffered for several days before I got at least partial relief. It helped me most of the time and after a few weeks, I'd taper off until the next visit from this horror. There are no over the counter painkillers that have any effect on cluster headaches and they’re slow in any event. Narcotics aren’t very helpful either and not a good idea anyway.
Although it needs a rewrite, here is another thing that worked very well for me:
http://www.netsync.net/users/charlies/
It may seem odd but it works. I kid you not.
Good luck, stick around, feel free to rant away and let us know how you're doing.
Charlie
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Lori
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Re: New and overwhelmed
« Reply #12 on: Nov 6th, 2003, 10:34pm » |
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Hi Amen,
Hope you get relief very soon with the verapamil. Just read as much as you can here. Especially the medicine board here. You'll learn alot. Hope you read the info on the left on oxygen (print for doctor) and don't give up! keep us updated on how you are doing, ok? Be sure to go to the OUCH site and join too. There is so much info there and the only organization doing something to change things for sufferers.
Take care!
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Blessings and PFDAN,
Lori
Psalm 23:4 ~ Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me.
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TxBasslady
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Re: New and overwhelmed
« Reply #13 on: Nov 6th, 2003, 10:58pm » |
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Hi Amen,
Welcome to the board.
You have certainly come to the right place for good advice and hopefully some useful information.
My dr put me on a Prednisone taper for 2 weeks. That was 58 days ago, and I have been pf ever since.
I sure hope you find what you need, to keep the beast at bay.
Sending you pf vibes from Texas
Jean
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drnoe
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Overwhelmed is about right, yeah?
I see above so much loving advice that I can't think of anything to add cept this;
The worst thing for me bout CH is it's in my head and I can't disassociate from it like another part of my body. It IS in our mind and that is where we need our first line of defense.
One of the (many) great things bout this place is how normal we can feel.
It's what we go through that's crazy, not us.
Takes a lot of hands to prop up this much reality,
welcome aboard
Dan
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cootie
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Re: New and overwhelmed
« Reply #15 on: Nov 6th, 2003, 11:23pm » |
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Hi amen........hope ya find sumthin that works for ya soon.........ok I think it's here I tell ya ta grab an oar and row with the rest of us ! Pam a supporter that also can't take neurontin or Paxil (they be BAD)
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Patrick_A
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Re: New and overwhelmed
« Reply #16 on: Nov 7th, 2003, 12:16am » |
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Hello amen. Sorry about your troubles, but welcome to "THe House of Pain".
Somebody here will have answers for you, all you gotta do is ask.
I am amazed that Imitrex didn't work for you.
Prednisone and Verapamil halted my cycle in its tracks. I have now been pain free for 2 months!
Patrick
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Woobie
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Re: New and overwhelmed
« Reply #17 on: Nov 7th, 2003, 1:52am » |
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Welcome !!
Nothing to add - just wanted to say Hello!
Peace out
Tina
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K.
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Re: New and overwhelmed
« Reply #18 on: Nov 7th, 2003, 2:19am » |
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Welcome,
Sorry you're in pain but you'll find lots of support here. Verapamil, O2 and imitrex is what works for me.
Hope you're PF soon!
K.
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amen
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Re: New and overwhelmed
« Reply #19 on: Nov 7th, 2003, 3:29pm » |
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Well I was wrong about the verapiml. It was fiorinal. He prescribed 2 every 4 hours. The pharmacist said that was alot and that I should start with one and if that doesn't work, then take another. Well I took one last night and just kept watching the clock as I put my 4 kids to bed 1 by 1. By 11:30 I was sleeping like a baby and never woke up (cept when my 4 year old came in cause she had a bad dream) until my alarm went off. I felt the morning beast coming on as usual and took another fiorinal. I could still feel it getting stronger so after an hour I took another. It never went past a 2 or 3 and I was able to get all the kids off without trying to crush my skull in the meantime. My night time Ha is usually about a 9 and last for about and hour. My morning usually last for about 3 hours and peaks at a nine for about an hour but hangs around a 6-7 the rest of the time. So I am very exticed about a 2-3. What's even better is that after that usual eve/morn ritual, I am toast for the rest of the day because the beast just seems to take everything out of me. Today I feel great! I just hope it continues to work and my cycle ends soon. Hopefully then I can enjoy another 6 pf years. If not- I am glad I found this site because I have always felt like no-one understood. (cept my dad cause he gets them too) I'll be sure to tell him about you guys!
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Prense
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Re: New and overwhelmed
« Reply #20 on: Nov 7th, 2003, 6:47pm » |
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on Nov 7th, 2003, 3:29pm, amen wrote:| Well I was wrong about the verapiml. It was fiorinal. |
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http://www.rxlist.com/cgi/generic/butalcod_ids.htm
Butalbital compound with Codeine is indicated for the relief of the symptom complex of tension (or muscle contraction) headache.
Additionally, it can be habit forming.
I am glad it seems to be working for you...for me, it did jack. Personally, I would not be visiting a doc that was prescribing narcotics for CH.
From a patient's point of view...we want relief and we want it fast. Docs should be aiming to reduce the frequency/severity/duration of CH in addition to offering us relief from individual attacks. I see no preventative here.
Chris
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Ree
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Re: New and overwhelmed
« Reply #21 on: Nov 7th, 2003, 10:44pm » |
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Hi Amen... (love the name I believe too LOL) Hey there isnt anything I can say that these guys havent said... there is a wealth of information here. This is the best place on the planet for Cluster sufferers... We know first had how to deal with Cluster. Experience speaks here... Welcome and sorry... Nice to meet you...Ree
and to my old cluster buddies... this is an awesome thread... How proud I am to walk in your company... You are ALL such good, warm supporters... does my heart good.................. love you all Ree
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amen
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Re: New and overwhelmed
« Reply #22 on: Nov 7th, 2003, 11:02pm » |
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Thanks for the advice Chris. I have been thinking the same thing.(About it being habit forming) I have already decided I will only take it for a couple days and only as needed. Then I will stop and see what happens. If the beast is still as intolerable as it has been then I will take all of the information I have learned about ch in the last few days and present it to my Dr. As I've said I have just found out that there is a name for this hell I have been suffering, and I am not sure that my Dr. is very experienced with Ch. Right now I am just desperate for the break.
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Prense
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Re: New and overwhelmed
« Reply #23 on: Nov 8th, 2003, 11:31am » |
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on Nov 7th, 2003, 11:02pm, amen wrote:| Right now I am just desperate for the break. |
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Oh how I know that feeling all too well. This link will offer you some CH doctors in MI. These docs have been recommended by other CH sufferers.
http://www.clusterheadaches.org/doctors.htm#usa
Oh and about the samples that are "similar" to imitrex...
To my knowledge, there is nothing similar to imitrex. There are other meds in the same drug class, but for whatever reason, some work for CH and some don't. It really all is hit and miss...trial and error.
Hang in there!
Chris
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| « Last Edit: Nov 8th, 2003, 11:35am by Prense » |
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amen
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Re: New and overwhelmed
« Reply #24 on: Nov 9th, 2003, 10:49am » |
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For those of you who were curious as to what the Dr. had given me (what form of Immitrex and what else) I don't want to make it sound as though I don't know what I am taking but I was at work and didn't have it on me and am self concious about my spelling. If course I don't know if i spelled that right. But any way it was 2.5 of Zomig in a disolvable pill and Imitrex in pill form. The Zomig did nothing at all and i am not sure about the Immitrex because I took it during my evening ha which is always milder that the middle of the night and morning ones. So I am not sure if the ha didn't last as long because it had already run its course or if the trex had subdued it. He didn't give me a big enough sample to really tell. i will try and get some more. Just to see.
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