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tnpruby
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first timer , lost and scared
« on: Mar 10th, 2004, 12:03pm »
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Hi my name is Toni and I have been a sufferer for 5 years now. I am experiencing switching and regardless of how many times I go to my neuro , I cant help but feel there is something more to my chronic. I have read , asked questions and cat scans , Please...dont even want to go there. To my surprise a spot on the back of my brain has been found. The docs explain that researching this problem will due me more harm than good. Iam on Inderal , 20 mg , 4 tabs 1x a day. Also Zomig for the nightly interuptions. Anybody fidn this familiar? I am nervous...I just want this series to end..4 days..w/ two interuptions a night. Undecided
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Re: first timer , lost and scared
« Reply #1 on: Mar 10th, 2004, 12:17pm »
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Welcome Toni,
 
I'll just drop a note to say hi at this point.
Understandibly you are worried If i was told something like that after a scan I would be Sh!ting ma self with worry. But try not to (I know!! Roll Eyes) there are many awnsers here and the other more expericenced with CH and headaches of other forms will i'm sure will pass on some advice.
 
In the meantime post away>
 
Scott
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Re: first timer , lost and scared
« Reply #2 on: Mar 10th, 2004, 12:20pm »
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Thank you Scott, just knowing someone understands me helps... Smiley
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Re: first timer , lost and scared
« Reply #3 on: Mar 10th, 2004, 12:22pm »
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Welcome aboard, not sure if I'm following you or not here, are you chronic or episodic?  And how can researching your brain do harm, are they talking about cutting?
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Re: first timer , lost and scared
« Reply #4 on: Mar 10th, 2004, 12:23pm »
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Toni,
 
First off, welcome aboard!
 
Although some CH sufferers have had success with Inderal, it is typically used for migraines.  If I'm not mistaken it is a beta blocker BP med.  It seems that calcium channel blockers (verapamil, calan, etc.) are the preventative meds of choice for preventing CH.  That is not to say it will work for you.  Everyone responds differently.  You just have to try it and find out.
 
Additionally verapamil can take a couple of weeks before you start noticing any relief.  Normally, a pred taper is used to cover that void.
 
If the zomig is working as an abortive, I would stick with it.  If you haven't tried O2 yet, I would definitely get a prescription for that.  Check out the oxygen link to the left.
 
You say chronic then go on to say "you want this series to end..4 days..w/two interruptions a night".  Are you chronic or episodic?
 
Anyway, best of luck to you!
 
Chris
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Re: first timer , lost and scared
« Reply #5 on: Mar 10th, 2004, 12:37pm »
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Hi and thanks for the notes, yes they mentioned cutting and of course I freaked, further more I am confused on either the chronic or episodic. I was told many things and exhausted at this point Undecided cant remember. I do get shadows during the day as well. I have symptoms of pain in my right side of my head all through my jaw , ear to my right eye which swells shut and tears. When I fall in a deep sleep I awake w/ unbearable pain , anxiety , and I sometimes throw up, rock back and forth. Its horrible , so if I am chronic ,episodic , dont recall, just hate this.
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Re: first timer , lost and scared
« Reply #6 on: Mar 10th, 2004, 12:39pm »
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How many days, weeks, months do your episodes last.  How many episodes to you get in a year?
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Re: first timer , lost and scared
« Reply #7 on: Mar 10th, 2004, 12:45pm »
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Oh gosh it has varied over the years but what I can put into words is this, I have had a series that lasted for six weeks then a switch to the left side , trip to the hospital due to unability to do anything normally. I was on oxygen, then demirol , and sent home after observation. That was the worst , there has been months where I have had none, then with no warning it hits in the middle of the night and happenns about the same time of night. Weird huh ? Usually the attacks last for weeks..up to 3 times a day. 4 being the trip to the er.
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Re: first timer , lost and scared
« Reply #8 on: Mar 10th, 2004, 12:53pm »
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At least 30 days PF consecutively in a 12 month period indicates episodic.
 
I avoid the ER if at all possible.
 
Chris
 
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BTW, it doesn't matter if you are episodic or chronic really.  I was just confused by your original post.
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Re: first timer , lost and scared
« Reply #9 on: Mar 10th, 2004, 1:03pm »
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I know , I try to avoid the er as well, my husband gets so nervous when I have an attack , it is usually his first question, " DO YOU WANT TO GO TO THE HOSPITAL" I shake my hand at him impling No...Do you know why oxygen helps ?  Huh
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Re: first timer , lost and scared
« Reply #10 on: Mar 10th, 2004, 1:23pm »
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Oxygen helps by constricting the blood vessels in your brain.  Your brain only requires a certain amount of oxygen, when the oxygen level is exceeded, the blood vessels constrict thereby making the headache go away.
BTW, welcome to this forum.........you're in the right place for help and information/understanding.
 
Regards,
 
John
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Re: first timer , lost and scared
« Reply #11 on: Mar 10th, 2004, 1:23pm »
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on Mar 10th, 2004, 1:03pm, tnpruby wrote:
Do you know why oxygen helps ?  Huh

 
It is a vasoconstrictor.
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Re: first timer , lost and scared
« Reply #12 on: Mar 10th, 2004, 1:32pm »
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AHHH got it thanks, I am off to work and hope nothing occurs, I am scared though, I hate this uncertain feeling of when I am going to be in pain, it is almost like walking on a mine field. I still dont feel grounded from this morning's attack, ya know completely all there. Also still some pressure behind my right eye . Thanks to all you cool cats for listeninig.  Cool
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Re: first timer , lost and scared
« Reply #13 on: Mar 10th, 2004, 4:04pm »
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Welcome and you're certainly not alone. Once I was told also that I had a "possibility of an anachronoidal cyst" (I think that's how they spelled it) after an unnecessary cat scan. I had had CH for ten years and only needed a Inderal refill. My regular neurologist was out of town and this ghoulish quack tried to get me on the table for exploratory surgery. One just doesn't do that kind of thing on a possibility. I knew it was CH and fortunately, or unfortunatley, I had a lot of experience with neurologists because of epilepsy and recognized BS when I saw it. By the way, this was 25 years ago, I'm still here and I haven't had a CH attack in 13 years.
 
I had good luck with Inderal. I didn't take it as a preventative as I was episodic. It would take 5 to 7 days to work. It wasn't anywhere near 100% but it did slow them down. It doesn't work so well for most, I'm told.  
 
Good luck and let us know how you're doing.
 
Charlie
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Re: first timer , lost and scared
« Reply #14 on: Mar 11th, 2004, 8:47am »
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Ok here I am in a daze, 3 attacks later, this is getting out of control. I woke with the 3rd this morning and afraid to go back to sleep but I am exhausted.  Cry. I am going to medicate with Inderal and hope for the best. Special thanks to Charlie who saw me in himself. I was staring to think I was alone w/ the abnomrality on the back of my brain.
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lost and scared
« Reply #15 on: Mar 11th, 2004, 3:35pm »
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I'm a firm believer in knowledge as protection against anxiety. Don't depend on your docs as the sole source of information: they don't have time to tell you everything you need to know.  
 
I recommend either the second or third book to give a coherent, organized information.
---
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...."Wink
 
HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
 
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Re: first timer , lost and scared
« Reply #16 on: Mar 11th, 2004, 4:25pm »
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Bob, thanks so much,  Grinhug, hug, hug, Grin I will look into those books. I appreciate your knowledge and advice. I am feeling better at this point of the day but still feel the hangover of the last attack. I am so grateful for everyone listening. It helps me more than you know. Cool
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Re: first timer , lost and scared
« Reply #17 on: Mar 11th, 2004, 8:11pm »
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Hello Toni
 
I'm so sorry you are suffering so badly at the moment. You so desperately need a good abortive to take away the fear of these attacks. Knowing you can stop them makes SO MUCH difference to the state of mind.
 
Have you tried Imitrex or oxygen yet for relief, 02 works for many of us, and certainly in this country, the oxygen in the ER is at too low a flow rate for Ch relief
 
Keep us posted and good luck breaking this
 
 
Wendy
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tnpruby
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Re: first timer , lost and scared
« Reply #18 on: Mar 12th, 2004, 8:40am »
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Hi Wendy , yes I have been on Imitrex, Max-Alt and now Zomig and Inderal , I believe I need somethin else here I am now day 6, 3-4 a day and know it is going to get worse...my neuro is on vaca..I have called the answering service left messages , my doc called me back yesterday when I was sleepin and left a message to stop by his office on monday , his receptionist will have something for me. So here I am..thanks for your support it means multi... Cool
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Re: first timer , lost and scared
« Reply #19 on: Mar 12th, 2004, 12:22pm »
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Prednisone taper worked for me.
 
The pred doesn't work for everyone......most say that when they finish the taper, the ha's return.  From the first day on the taper, my ha's were gone.  That was 185 days ago.
 
Good luck at the doc's office.  Hopefully you'll find what ya need to handle the beast.
 
PF vibes,
 
Jean
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Re: first timer , lost and scared
« Reply #20 on: Mar 12th, 2004, 2:24pm »
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Tnpruby,
 
My doc once used inderal as a preventative years ago.  That went by the wayside.  Didn't do a good enough job at preventing.  Perhaps look into that.  You sound like me when the prevent isn't effective enough.  Charlie, I think was hinting at that.
   
Hope things go better on Monday.  Hang in 'til then.
 
Kevin M
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Re: first timer , lost and scared
« Reply #21 on: Mar 12th, 2004, 3:06pm »
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Relax, hun, you are not alone.  Call your docs office and see if the receptionist cant get it for you today rather then waiting till Monday.  
 
I understand about your hubby wanting to get you to the hospital.  Mine does the same thing.  All you can do is stay strong.  You will beat the Beast.  And we will help you anyway that we can.  
 
Dont take one doctors advise about the surgery.  Get a secomd and THird opinion if you have to. Make sure you understand the why's and where's before you say yes to anything.  Bottom line it is your body and you have the right to understand what they are talking about doing.  
 
PF Wishes to you.
Tiannia
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