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   Author  Topic: New to CH, and so many questions...  (Read 617 times)
JESSICA.D
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New to CH, and so many questions...
« on: Jan 23rd, 2006, 3:52pm »
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Hey everyone!!
I'm new to CH, and I have so many questions!!!  
 
First, is it true that in many cases, CH disapears after pregnancy? Is there any relation between CH attacks and pregnancy at all?
 
Second, I just started using Imitrex injections, and I was wondering if the injection will help stop the attack that is starting at that moment, or does some of the drug stay in your system for a certain amount of time to prevent attacks in the following hours?
 
Thirdly, how can I get O2? Do I absolutely need a prescription by a doc, or is it possible to buy an O2 tank on my own? Is there any danger using O2? Side effects?
 
Fourthly, my doc said that there's no preventive drug for CH. He says I just have to deal with it when they come. But I've been reading through the board, and see that some of you do take a preventive drug. Do they work? And what drugs are they so that I could ask my doc?
 
And, last but not least, do any of you feel a numb feeling on the side the attacks occur between attacks? Like a gentle pushing behind the eye, but that doesn't really hurt. It's just there and very annoying!
 
Thanks to all of you who take the time to ready through this long post of mine!! Sorry if some of my questions might sound dumb, but like I said, this is all new to me. Also, english is not my first language, so if something I wrote is not clear, let me know and I'll re-phrase it!
 
Thanks again!
 
Jess
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E-Double
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Re: New to CH, and so many questions...
« Reply #1 on: Jan 23rd, 2006, 4:03pm »
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Hi Jess,
 
Your doctor needs and education!!!!!
 
This is a great resource to know like the back of your hand...print it out and give it to the doc  
 
http://www.brightok.net/~mnjday/chtherapy.pdf
 
It will present the appropriate treatments that you should seek and your doctor should know!!!  
 
 
If you want an abortive with the least amount of side-effects O2 should not only be requested but demanded from your doctor!!!  
 
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
 
You may want to check out OUCH Canada for some more specifics to how the Canadian system will work with you.
 
http://www.clusterheadaches.ca/DesktopDefault.aspx
 
I have recently been using Zyprexa as an abortive and have found it to work (for me) as fast as Imitrex and without the "hangover"  
 
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action= display;num=1120904753  
 
If you do have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful  
Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep.  
 
With the exception of 10-12 times.....I have slept through the night since August '04 (went chronic in March 05).....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time.  
 
Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not...  
 
The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern.  
I stayed with melatonin and have had decent sleep overall.  
 
It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression.....  
 
Like I said we are all different.  
 
Regarding pregnancy, some women get reprieve and others still have attacks so I think it is like with everything else, dependent on the individual.
 
Imitrex is used for accute attacks and not to be used as a preventative. Though some of the second generation triptans can be used in such a manner, yet they do not appear to work as quickly to knock out an attack that is brewing.
 
Best wishes, good luck & stay as positive as you can!!!!  
 
Eric  
 
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Re: New to CH, and so many questions...
« Reply #2 on: Jan 23rd, 2006, 8:40pm »
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E-double gives good advice follow it after consulting with the doc. Where do these doctors come from. Angry The first thing I ask a doctor is how many patients with clusters have they treated. The next thing is "I need O2." Right after that I demand a referral to a neuro should a proper diagnosis be warranted. Good luck and all the information you need is on the left. You cannot depend that the GP will know this condition as it is rare. You need to study your condition and then you can slap the doctors around.The ladies will be along directly to weigh in on the pregnant thing. No pun intended.
jb
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Re: New to CH, and so many questions...
« Reply #3 on: Jan 23rd, 2006, 8:43pm »
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1. Dont know. Never been pregnant.
 
2. Imitrex stops only the immediate attack,
 
3. There is a great oxygen resource link to the left.
 
4. Your Doc is a complete moron. Do some research. I use 480 mg verapamil daily while in cycle. It reduces thw frequency and intensity of the attacks. Find a new Doc.
 
5. Absolutely. It's called shadowing.
 
6. There are no dumb quetions when someone is suffering and is uneducated about the condition. I asked the same questions and a million more 30 years ago. Read read read. There is no better resource on earth than this site for info. Welcome to my world. Its survivable.
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Karla
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Re: New to CH, and so many questions...
« Reply #4 on: Jan 23rd, 2006, 10:59pm »
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Fire your dr and get a new one or request a neruologist who specializes in HA, ch to be exact.  I have tried over 35 differernt preventatives.  900mg Lithium reduced my ch from 8/day to 4/day and not as severe.  Many here take verapamil with great sucess.  I tried up to 960mg and it didn't help me.  I tried indomethacin and for 5 months it worked and I was pain free and then they came back and the medicine no longer worked after repeated tries.  tlhere is topamax, neurontin, zyprexa, elavil, predisone, etc.etc.  Those are the most popular and sucessfull.  I find my ch last 1 1/2 hours long.  followed by a 1/2 hr shadow repeat 7x.  Imitrix only last 2 hours on me and then I have to repeat the dose or  dance with the beast.  Oxygen check the link to the left  
<== for oxygen info.  I found 10-12 lpm for 15 to 20 min. breathing to abort my ch wonderfully.  No side effects and would cover all my ha.  Only lasted for 2 years and then that quit working for me.  Good luck!
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Re: New to CH, and so many questions...
« Reply #5 on: Jan 24th, 2006, 3:00am »
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Jessica,
 
warm welcome! Smiley
 
Unfortainly, I can't help you with your Qs about pregnancy, O2 or imitrex, but I must agree with others: there ARE preventatives. I know, I have tried several of them over my ch years. The best for me was verpamil, which I took 600mg/day. That sent my ch into remission in April 2005.
 
My advice: read a lot about ch. You'll find lots of info about it in here. The more you know about ch the better you can deal with it - and docs. I've met many neuros during these ch years and I must admit that I knew more about ch than some of them...  
 
I do hope that you'll find a great doc and treatment which works for your ch. I must remind you: it might take some time, but you'll find the ríght treatment.
 
When you have questions, need advice or support, want to vent about anything... this is the place.
 
Best wishes & PF time,
 
Sanna
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Re: New to CH, and so many questions...
« Reply #6 on: Jan 25th, 2006, 4:41am »
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I will weigh in on the pregnancy question, from my experiece, I do not remember ever getting them while I was pregnant, however, I have had two children and still get CH, so no, they havent went away after pregnancy.  Sorry I couldnt help more Smiley
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Bob_Johnson
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Re: New to CH, and so many questions...
« Reply #7 on: Jan 25th, 2006, 9:35am »
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Your library should be able to obtain these articles for you at no, or low cost.  
 
Re. special needs of women. Both of these in HEADACHE QUARTERLY, Vol X, #2, 1991: "Women and headaches:a comprehensive approach", p. 31-36.  "Special considerations in the management of headache in women", p. 37-43. The last one focuses on role of hormones in headache and how medications must be altered.
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Bob Johnson
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Re: New to CH, and so many questions...
« Reply #8 on: Jan 25th, 2006, 10:16am »
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About your doctor.  Before you replace him/her you have to ask yourself 2 questions.  1.  Can I find another doctor who will know more?  2.  Will this doctor do the research needed to care for me?
 
My doctor got the diagnosis correct (since then been confirmed by a nuero and a headache specialist) but his treatment plan came from doing research not experience.  Unfortunately, (like all our drug experiences with CH) it is hit or miss.  Even though he knew very little about CH, he did the research to find out.  Also, my wife and I did more research and told him things we wanted to try (and after he read up on them, he agreed).
 
Finally, after getting sick and tired of this cycle I got a refferal to my headache specialist who seems great (and has a lot more CH experience) who put me on Mygranol which my insurance company is suppossed to be shipping me soon (I HOPE).
 
Anyway, this long rant is really for 2 things.  If you can't find a Dr who has dealt with CH before (which maybe the case), find one who cares enough to listen and do the research as well.  Second, get a refferal to a headache specialist if there is one near you.  At the least, they should be able to get you better samples and sample save bigtime $$!
 
Anyway, welcome to the CH crowd.  We are happy to have you.  Use this place as often as you can and visit even more during your cycle.  I have got through very tough times on these boards even when I am not posting.
 
P.S. Oxygen is a must!!!!  You can ask about side effects, but I was told it is the safest treatment method available (outside of hot showers and exercise - and good luck if those are the only abortive methods you use).
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Re: New to CH, and so many questions...
« Reply #9 on: Jan 25th, 2006, 11:12am »
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This is the second thread in a row I've read this morning where Bob Johnson pipes in with on the mark medical advice to a question. What a blessing you are on this site.
 
Guiseppi
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JESSICA.D
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Re: New to CH, and so many questions...
« Reply #10 on: Jan 26th, 2006, 1:29pm »
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Thank you so much to all of you!
In the night of monday to tuesday, I got a total of 8 hits. The 2 fisrt ones were ok because I had my Imitrex shots, but as for the rest, it became so bad that I was rushed to the hospital. Fortunately, on monday, I had printed more of the info on the site, and was able to give it to the ER doctor.  
With that info, he did some research, and was able to help me better than the 5 docs I had already seen in the past 2 weeks.
He prescribed me O2 for home (which has only been approved in Quebec for CH patient in the past 3 months!), and he also prescribed me novo prednisone 50mg, a cortisone based med that is supposed to help break the cycle.
I am doing better now. I hope the meds and O2 are going to help...
I will let you know!
 
Thanks again,
 
Jess -xxx-
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Re: New to CH, and so many questions...
« Reply #11 on: Jan 26th, 2006, 1:42pm »
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You could see if you can get on an additional med like verapamil which is a preventative.  
We tend to take these to help decrease the frequency and intensity of attacks.  
Though the prednisone may wipe out your cycle, don't be surprised if the attacks start coming back when your taper is near the end.
Prednisone is used many a time as a transitional medication to give a little break while the preventative begins to reach a therapeutic level
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Re: New to CH, and so many questions...
« Reply #12 on: Jan 26th, 2006, 2:31pm »
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Quote:

If you want an abortive with the least amount of side-effects O2 should not only be requested but demanded from your doctor!!!

 
   Ditto to this.  Especially the demand part.  Why some Physicians are so reluctant to prescribe this is so far beyond me as to make me crazy.  
 
 
Linda
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