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Topic: Going 2 see neuro tom., what to ask for? (Read 737 times) |
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Ty_79
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Going 2 see neuro tom., what to ask for?
« on: Feb 13th, 2006, 6:17pm » |
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Hi,
I'm new here. Been getting CHs for about 10 years and was just diagnosed 2 years ago. Started my latest cycle around Dec. 28th. I'm gonna see The neuro that diagnosed me tomorrow. I've been using welding/torch cutting Oxygen for a couple weeks. Although I have no idea how many lpm i'm getting (no lpm regulator) it has been very effective. I don't recommend anyone doing this, but I have no other choice.
When I was due to start a cycle a year and a half ago, I was taking Zyprexa, prescribed by a psychiatrist. I was also experimenting with psilocybin mushrooms at the time.
I know, not the smartest or healthiest combination. `Anyways, While taking the Zyprexa and the occasional psilocybin, the cycle that was due that summer, never showed up. It wasn't until about 6 months later that I went into cycle again, after I had stopped taking Zyprexa and psilocybin.
Until reading posts on this board and visiting the clusterbusters site, I had no idea that either of these substances could effect cluster headaches. I have a strong feeling that it was one of these drugs, that delayed the episode that I was supposed to get.
I have tried Depakote and Prednisone in the past, prescribed by the Neuro, to treat my CHs. Neither had any effect. Other than Zyprexa, what medication or treatment should I ask the doctor about? I know that Imitrex has been very effective for a lot of people but I would be reluctant to take it because I heard it can be harmful to the heart. Any suggestions will be appreciated.
I have found this site to be very helpful and supportive. The wealth of knowledge here is incredible. Thanks to everyone here.
Ty
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E-Double
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Re: Going 2 see neuro tom., what to ask for?
« Reply #1 on: Feb 13th, 2006, 6:21pm » |
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Zyprexa can be very effective as an abortive!!!!!!!!!!!!!!
Read these:
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
I have used 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. (Maybe I should start folowing my own advice again hahahaha!)
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.
Best wishes, good luck & stay as positive as you can!!!!
Eric
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Roxy
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Re: Going 2 see neuro tom., what to ask for?
« Reply #2 on: Feb 13th, 2006, 6:25pm » |
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on Feb 13th, 2006, 6:17pm, Ty_79 wrote:I've been using welding/torch cutting Oxygen for a couple weeks. Although I have no idea how many lpm i'm getting (no lpm regulator) it has been very effective. I don't recommend anyone doing this, but I have no other choice.
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You don't need a choice, welding 02 is just as good as medical and it's cheaper. Just rig up a medical reg to use with it. I used mine for years not knowing what lpm's I was getting. I just turned it down until it kept the bag full. But if you get the medical reg, you can use a bubbler with it.
on Feb 13th, 2006, 6:17pm, Ty_79 wrote:| I was also experimenting with psilocybin mushrooms at the time. |
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The shrooms would be what knocked your cycle out.
on Feb 13th, 2006, 6:17pm, Ty_79 wrote:| Imitrex has been very effective for a lot of people but I would be reluctant to take it because I heard it can be harmful to the heart. |
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It will also cause more headaches.
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Only two things are infinite, the universe and human stupidity, and I'm not sure about the former. (Einstein)
I used to have a handle on life....but it broke.
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Ty_79
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Re: Going 2 see neuro tom., what to ask for?
« Reply #3 on: Feb 13th, 2006, 8:20pm » |
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Thanks for the replies. Both were very helpful. I'll tell the neuro I want to try Zyprexa. E-Double I don't have a printer, otherwise I would take your advice and give him all the info from the first link on paper. Hopefully he is as informed on the subject as all the kind folks here are. As far as O2 goes, I have a huge cylinder out in the garage that costs $8 to refill, where as the tanks I received using the prescription from the doctor cost about $16 and only lasted for 2 days. And my insurance didn't cover the cost. I'll look around for a regulator so I can hook up a bubbler. Roxy, after visiting the ClusterBusters site I have to agree that the shrooms obviously prevented/delayed the entire episode. If I knew then what I know now, I would probly have some "medicine" stocked up in the freezer, and most likely, wouldn't be going through this cycle.
E-Double and Roxy, thanks again for the info and support. Its so nice to know that we aren't alone in this. And that i'm not (completly) crazy! 
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E-Double
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Re: Going 2 see neuro tom., what to ask for?
« Reply #4 on: Feb 13th, 2006, 8:23pm » |
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Read!!!!!!!!!!
Hope you find relief!
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Jonny
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Re: Going 2 see neuro tom., what to ask for?
« Reply #5 on: Feb 13th, 2006, 8:34pm » |
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To convert a medical regulator, just disconnect the medical connection and connect a 2 1/2"-1/4" NPT (National pipe thread) nipple, along with a CGA-540 connecting nut. Use teflon tape on the threads and test for leaks with soapy water when you first hook it up.
PM or email me if you need help.
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
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Karla
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Re: Going 2 see neuro tom., what to ask for?
« Reply #6 on: Feb 13th, 2006, 9:51pm » |
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zyprexa has shown in a case study done some promising results as far as helping ch. So either one or the combo could have helped.
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Karla
suffer chronic ch
ch.com groupie since 1999
Proud Mom of Chris USMC Semper Fi
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