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Topic: New survivor on board...need info (Read 910 times) |
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tyhand21
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New survivor on board...need info
« on: Jan 17th, 2005, 11:42am » |
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I cried when I read the opening page of the website! I guess while knowing all along that it was all in my head I can now see that it isn't just in my head! (Does that make sense?) There are other people who feel the same way and I'm not crazy! Sorry if this has been asked before somewhere else here but I am new to this. I was FINALLY diagnoised last week with CHs after 10 years of being treated for allergies, poor vision (I have 20/15), migraines, tension HA, tumor (complete with a perfectly normal MRI scan),and you name it. After reviewing my medical records, I think it was triggered by Depo Provera in 1995. I am a 37 yo female and now in month 4 of this cycle. The PA who is treating me, while finally being the only person to ever put an accurate name to my pain, didn't seem all that sure of what to do so I thought I would check out with you all to see if this treatment sounds right. I am taking Inderal 40mg twice a day and was given Zomig for the big ones. I actually haven't had a "big one" since I started the Inderal 10 days ago so I haven't used the Zomig yet. In fact, I was pain free until last night at work when I got a shadow of a k2-3. I was afraid to take the Zomig for the first time at work so I just sucked it up and hoped it didn't get worse. Well, it didn't get worse but just remains annoying enough that I can't sleep. I am a labor and delivery nurse and work the night shift and often have CHs at work. Does the Inderal/Zomig sound about right and has it worked for anyone else? Does the Zomig make you feel strange? Any info would be greatly appreciated.
~J
AWESOME site by the way! 
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thomas
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Re: New survivor on board...need info
« Reply #1 on: Jan 17th, 2005, 11:49am » |
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Welcome aboard, yes zomig makes you feel "strange" but it isn't a narcotic. Try some melatonin, see if that helps you sleep.
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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nani
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Re: New survivor on board...need info
« Reply #2 on: Jan 17th, 2005, 11:56am » |
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Hi ty and welcome. There are women here who associate the onset of their CH with hormonal changes. I'm sure you'll be hearing from them. My first episode was (31 years ago) after the birth of my first child. I guess that was hormonal as well. It seems you're getting some relief with what you're taking. I would suggest that you do some research here and at the OUCH site about other preventative meds. Many of us use Verapamil and lithium. I also use Neurontin. I'm unable to use the triptans to abort the big ones, so I only use oxygen. You may want to schedule an appointment with a Neurologist and discuss your options. If you can find a good one that knows about CH, all the better. Good luck to you and please keep us posted. Pain free wishes, nani
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Tara Ann
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Re: New survivor on board...need info
« Reply #3 on: Jan 17th, 2005, 12:21pm » |
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Hi and welcome ty. As suggested, a nuerologist is best to see for CH. And Oxygen works great for alot. I'm sure you have plenty of access to it at work, maybe next time you feel a CH coming on you should try it. You need to use a nonrebreather mask and 12-15 li flow (am I explaining right all, if not clarify for her).
I use lithium and verapamil for preventatives. I don't have any experience on Inderal that I can remember. I have tried zomig without success but I didn't have any side effects that prevented me from functioning at all when I did use it.
Also prednisone works great sometimes as a temporary break while the preventatives work into your system. I just finished little over 10 day taper of it and it was a wonderful CH vacation.
Also if you get hit after going to bed alot, sleep sitting up. It sucks but I caught a few extra zzzz's sleeping a recliner when things got really bad. Not the most restful sleep, but better than none at all.
Lastly read read read. The buttons on the side of this website hold TONS of great info. Also the archives are an amazing resource as well.
Goodluck, stick around, and keep us posted!
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http://www.myspace.com/taraann77
 
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Langa
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Re: New survivor on board...need info
« Reply #4 on: Jan 17th, 2005, 12:21pm » |
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HI Ty and Welcome to the Family...
You should look into the oxygen as well - there's a link to the left on it. Oxygen has been a life saver for many of us in either aborting a cluster attack or greatly decreasing the intensity of the pain, but it has to be used properly. And as mentioned before, Melatonin for night-time hits; for me, it stopped them completely.
As Nani said, you should ensure an appt. with a Neurologist to discuss your treatment options further.
Good luck!
Langa
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RichardN
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Re: New survivor on board...need info
« Reply #5 on: Jan 17th, 2005, 12:38pm » |
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Hi ty, and welcome to the family
Ten years . . .damn! My CHs started in 1/01 as a result (I now believe) of a head injury. My wife found this site in 2/02. Like many here, many tests, non-working meds, mis-diagnosis. Here was a name-for-the-pain and people who understood that pain.
Do try 02 . . . you are in the perfect place to try it . . .especially as your hits are in the low range now. For those of us it works for . . . miracle. Research the 02 info and copy. Sounds like you have a GP who's willing to learn. . . . . . tis often the case that the clusterheads have to educate their doctors.. . . and here lies the information to do it.
Welcome to the looney bin 
Be safe,
PFDANs
Richard
PS You will find many nurses and other medical folk here.
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I can live with the beast as long as I don't have to "dance" with the bastard.
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Bob_Johnson
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Re: New survivor on board...need info
« Reply #6 on: Jan 17th, 2005, 8:52pm » |
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You'll be able to use these books; second one is best.
HANDBOOK OF HEADACHE MANAGEMENT, 2nd ed., Au. Joel Saper, MD, 1999, Lippincott Williams & Wilkins. A highly condensed volume for doctors but good for "advanced" clusterheads who have a grasp of medical terminology and medications. Covers all types of headache with the section on cluster being brief. Sections on general considerations in treatment and on medications are important.
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $49 at Amazon.Com. This volume is better organized and easier to read for nonprofessionals compared to Saper's book. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book...."
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Explore good info here:
WWW.MELDRUM.DEMON.CO.UK/migraine. At bottom of home page, look for FAQ on clusters: four sections of extensive material; strong on treatment options.
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Bob Johnson
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Redneck
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Re: New survivor on board...need info
« Reply #7 on: Jan 17th, 2005, 11:01pm » |
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Glad you finally got a real diagnosis for a change. Nope you ain't crazy (you may be if you hang around this bunch  )
Read all the medical info on the left and go to the OUCH site and read there :
http://www.clusterheadaches.org/
I have never tried Zomig, it works well for a lot of people. Inderal, thats a different story, I used to take up to 360 mg a day. I hated it and don't think it really worked for me. Verapamil has worked well for me. However, different things work for different people.
02 has also been a lifesaver for me. I never go anywhere without my little green bottles, even when out of cycle.
Again, Sorry you have to be here, but hope you find what you need here.
Jim
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..Danielle..
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Re: New survivor on board...need info
« Reply #8 on: Jan 18th, 2005, 2:21am » |
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Haven't tried the zomig yet, so I can't help you there.
Wanted to welcome you here though !
Your description of yourself was so similar to mine, that I had to make sure I said hi ! I'm 36, female and mis-diagnosed for 10 years. (blubbered pretty good too, reading the front page...don't tell anyone ...ok?)
Finding this place can do a lot to ease your anxieties. Your sanity...well...
Danielle
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sandie99
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Re: New survivor on board...need info
« Reply #9 on: Jan 18th, 2005, 3:06am » |
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Welcome abord! Glad you found us...
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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IrnBru
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Re: New survivor on board...need info
« Reply #10 on: Jan 18th, 2005, 4:16am » |
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I think you guys in the states have the same drugs with different names. I have used Imigran injections for 5 years, they are good at getting rid of the CH but can have nasty side affects however these are far better than the headache.
Glad you have been diagnosed i went 14 years of barmy doctors telling me i had all sorts of problems. I am new here to and think this is the best web site i have ever discovered,
Think positive and remember you are the most important thing in your life
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sindee
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This worked for me!
« Reply #11 on: Jan 18th, 2005, 7:57am » |
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Hey, as soon as I woke up this morning I knew I had to share this with you all! I was getting my clusters every two hours a night, exhausting and painful to say the least! This is the first time I have had them with no medical insurance. It cost 74.00 for the doctor and 56.oo for two doses of nasal Imatrex which did nothng for me!
Out of desperation, I went onto WEB MD and typed in cluster headaches and found a link to a site www.sinusbusters.com. It is hosted by a gentleman who suffered through severe clusters for 15 years, was sprayed with pepper spray on the Ophra show and realized that his cluster ceased immediately. So he develped a nasal spray which contains pepper and other natural ingredients. For 12.00 a bottle, heck ya I would try it!
Well, it is my second night with no cluster attacks! It is a nasal spray, and on the onset of the cluster I just laid back on my pillow and squirted a small amount into my right nasal and let it run back into my throat. Yes it has a bite, but it stopped that head ache and I have had no more!
I just had to share this with you all because for me it is a great discovery! But beware, the first time I used it, I was desperate, used to much and let me tell you...it truly has a bite. But it worked! It worked! It worked! Thank you Lord! Good luck everyone! Sindee
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nani
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Re: New survivor on board...need info
« Reply #12 on: Jan 18th, 2005, 9:41am » |
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Ty...ignore the sinus buster info....it doesn't work.
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Others may come and go, but MY power is MINE.
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tyhand21
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Re: New survivor on board...need info
« Reply #13 on: Jan 18th, 2005, 10:27am » |
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Thank you all so much for caring enough to reply so quickly. I will look into getting a neuro consult and until I determine this med combo isn't working I guess I will stick with it. I will also hit the 02 @ work the next time I feel one coming. It sucks that I had to even go looking for information on such a misunderstood and frustrating condition but after reading these messages boards I am glad I am in this with such a great group of people!
Thanks again! 
~J
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