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Topic: Another newbie head case here. (Read 650 times) |
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cart7
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Another newbie head case here.
« on: Nov 13th, 2007, 2:26am » |
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I'd like to introduce myself. My real name is Glen. I'm into hour 2 of a another head banger. The effects seem to be dropping off enough that I can now sit here and type.
I've suffered these things for probably 15 years of my near 50 year old life. Always thought and was diagnosed with Sinus problems. I suppose I maybe lucky if you can call it that. Most of my events are spaced around 2 years apart and normally last around 4-6 weeks.
This one though seems a little more persistant.
I was referred here by a guy name Russ from Rhode Island on a internet fishing forum. He's a CH'er himself and has already given me some tips.
After recently finally getting the correct CH diagnosis, the doctor prescribed Presnidone. Started it around week 2 or so of this event and it worked immediately. First week, 80mg a day. Then the taper off last week with 60. All was well until last night. uh oh.
Now tonight again. Easily a 6 to a possible 7. These aren't even as bad as they were before the presnidone started.
I've got a couple questions.
The doctor said to go back to 80mg. O2 isn't out of the question at this point either. If the first time with the 80 mg dosage didn't knock this off cycle, will restarting with 80mg again have the same effect as the first time I did this?
These 2 recent attacks have been slightly different. Less pain in the eye area and more into the temple and jaw joint along with down the neck from the temple. These events have been longer as well. My first attacks lasted maybe 45min total. These are dragging 2 hours or so overall. At some point I can finally laydown and sleep but I still feel some tensioning in the temple neck area. I never had that before. Anyone have that?
Thanks for listening. Hoping another hour and I'll get a few hours shuteye before work.
Thanks for this site. Lots of good info here.
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ski2k
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Re: Another newbie head case here.
« Reply #1 on: Nov 13th, 2007, 4:50am » |
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First of all... Welcome aboard! You found the right place! Read all you can, and print out some of the info to share with your doc.
Be careful with the prednisone. It's not meant to be taken long term. You need to ask your doc about getting on a preventative like Verapamil or Topomax asap. The prednisone is best used to buy you a little time while one of the prevents buld up in your system.
Definitly look into getting some O2 to use as an abortive. It's cheap, effective, and doesn't have the side effects of a lot of the other drugs out there. In case you didn't already read it... You need a prescription for 100% Oxygen, 15 lpm (liters per minute), through a non-rebreather mask. The nasal canules just won't cut it!
You might also want to try an energy drink with Taurine and caffeine in it. Drinking one (quickly!) at the onset of an attack can often stop it dead in it's tracks. Sounds silly... but it works! Doesn't matter which kind.... Red Bull, Monster, Rock Star... Whatever. As long as it has those two ingredients in it.
Sooo much more info here to take in! I hope this helps some! Keep us posted on your treatment and progress!!
Pain free wishes,
Adam
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lorac
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Re: Another newbie head case here.
« Reply #2 on: Nov 13th, 2007, 8:03am » |
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Welcome ..... Hope you feel better today..... you have come to the best place for info etc.....
Where is Arnold USA.? pain free wishes to you!
LORAC
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Guiseppi
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Re: Another newbie head case here.
« Reply #3 on: Nov 13th, 2007, 10:59am » |
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I had a doctor who tried the prednisone as a way to "break" the cycle. It never worked to break the cycle but provided complete relief from pain while I was on it.
A warning, when I take prednisone alone, with nothing else in my system, when I go of the prednisone, I get the absolute worst headaches I've ever experienced. It's like the CH builds up behind the prednisone like a dam, and when the dam breaks,,,well DAMN!!!!
Now when I go on cycle I start a 2 week prednisone taper while I ramp up my prevent, lithium. Takes about 10 days to build up a therapeudic level of lithium so the prednisone protects me until then. For dosage comparisons I'm 47, male, weigh about 190 and take 1200 mg a day of lithium while "on cycle."
Push for the oxygen as your first line abort, I can kill a CH in less then 10 minutes, that's "totally pain free." Worth a shot for sure!
Guiseppi
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naka425
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Re: Another newbie head case here.
« Reply #4 on: Nov 13th, 2007, 12:01pm » |
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I'm new here myself. Been getting overwhelming information here and its a sigh of releif.
Anyways. When I have my headaches and I'm coming down. I always seem to have pain or an soreness so to speak in my temple and lower neck. I usually use a cold wash cloth on my temple and one on my neck. It seems to help. I know many say not to use asprin or what not but if its just the aftermath of the headache or just the soreness from having the headache, I have taken some asprin and it does help relieve that pain.
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musicman
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Re: Another newbie head case here.
« Reply #5 on: Nov 13th, 2007, 12:14pm » |
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I recommend getting o2 as an abortive and staying as far away from prednisone as possible. It may work temporarily but the side effects are not worth it at all... especially with such a high does (80mg is a lot). Last winter i had a 3 month episode and i got so overwhelmed that i finally gave in and went on prednisone. A month after though once i tapered off of it i started to get rebound headaches so i went on prednisone again. Now, about 6 months later my immune system is still compromised from the prednisone and i have been on antibiotics 6 times since. It may be temporarily worth it but watch out for the side effects... they are killer.
Also i recommend taking your neurologist’s advice with caution because my experience is that some of them do not know how to properly treat cluster headaches and will only prescribe prednisone and varapamil.
I am sorry to hear you have these though, plainly and simply they suck.
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Rosybabe
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Re: Another newbie head case here.
« Reply #6 on: Nov 13th, 2007, 1:49pm » |
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Welcome aboard!
give a try to melatonin and kudzu, they are over the counter and available almost anywhere vitamins are sold.
Energy drinks are of great help too. Push , push for the O2.
Wishing you a very short and mild cycle.
PFDN for all!
Rosy.
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CostaRicaKris
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Re: Another newbie head case here.
« Reply #7 on: Nov 14th, 2007, 1:42am » |
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Prednisone worked fine for me when I took it for two and a half weeks while working up on Topamax. Do not skip a dose of Prednisone (I made that mistake and got hit hard) and if you are not taking something to replace the Prednisone (Topamax, Lithium) call your Dr because you should be.
I'll agree with everyone else; get O2 & energy drinks and Melatonin (9- 12 mg) a night esp if your hits are after you fall asleep.
Welcome
Kris
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CostaRicaKris
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Re: Another newbie head case here.
« Reply #8 on: Nov 14th, 2007, 1:43am » |
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on Nov 13th, 2007, 10:59am, Guiseppi wrote:A warning, when I take prednisone alone, with nothing else in my system, when I go of the prednisone, I get the absolute worst headaches I've ever experienced. It's like the CH builds up behind the prednisone like a dam, and when the dam breaks,,,well DAMN!!!!
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Ain't that the truth!
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cart7
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Re: Another newbie head case here.
« Reply #9 on: Nov 18th, 2007, 8:27pm » |
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on Nov 13th, 2007, 12:01pm, naka425 wrote:I'm new here myself. Been getting overwhelming information here and its a sigh of releif.
Anyways. When I have my headaches and I'm coming down. I always seem to have pain or an soreness so to speak in my temple and lower neck. I usually use a cold wash cloth on my temple and one on my neck. It seems to help. I know many say not to use asprin or what not but if its just the aftermath of the headache or just the soreness from having the headache, I have taken some asprin and it does help relieve that pain. |
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It's interesting. When this cluster first started it was the classic around the eyes, nose clogging, eyes running, icepick stabbing pain. Prednisone took it out the first week. Started backing off, pain returned on day 3.
Different pain though. The stuff around the eye isn't happening, it's more in the temple and into the jawbone area down the neck from the temple.
The events last longer too...
The first events lasted maybe an hour, these are going on 2-3 though not at a peak kip.
I'm on day 4 of Melatonin. 12mg. Saw on a link from here where a neuro said to start with at least 10mg. He also stated that over the counter stuff from places like Walgreens or Walmart are often under-dosed so it's alright to take slightly more to compensate. Day 2 of the Prednisone ween back. Only one shadow today and it went away quickly.
Hopefully this does it as my appt with the neuro isn't until Dec. 5th. 
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