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Topic: Another bout of the beast. (Read 172 times) |
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Preemiemama
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Another bout of the beast.
« on: Jun 5th, 2004, 7:45pm » |
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Saw my doc but meds haven't helped yet. He handed me a ton of prescriptions to try and said they'll take time to start to work. My response was I want them to work NOW. His reponse " give it time to start working"
Now I'm on Depakote ER 250 mg's twice a day, ramping up Neurontin by 300 mg's every 3 days.
My BP runs low and he was leary of trying Verapamil at this point but it is an option if this doesn't work. He also mentioned Lithium with it as a combo if what he's done isn't going to work.
I got the " stop smoking" talk I get from him all the time but smoking takes an edge off the attack when it's in progress.
He said to be sure I'm drinking more water, less caffeine. I'm not willing to give up coffee yet, but I will drink more water.
He's working on getting O2 for me to use at home too.
I had a monster attack today. I said before it's as if I could rip my eyeball out of my head and toss it against the wall. I kept clutching my eye, rocking back and forth, pacing, and my little girl came into the garage where I was. I didn't want my baby to see me like that and I couldn't get the words out to please go back in the house. I was shaking and when I went to move my hand, my fingernails scratched my eye.
Bought myself a trip to the eye doc. Corneal abrasion. Got some drops for it. An antibiotic ointment to put in and 2 other eye drops, one is a steroid base, the other is just a rewetting type drop. Gotta wear a patch for 24 hours.
I was a sight to see. Coming off a major attack, then the little mishap with the fingernail V the eye.
Pain is better but I've got a bad ass headache. I mentioned to my neuro not only the severity, but the duration of how long it lasts. He told me clusters can last 3+ hours in some people, some are episodic, others chronic. I will always have the migraine history, will always have the chronic daily headache history, this is just one more to add to the mix.
I hate to be here, but glad as heck others understand because nobody else does but the people here.
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bobkip
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Re: Another bout of the beast.
« Reply #1 on: Jun 5th, 2004, 9:13pm » |
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Hi Preem,
Welcome to the board, sorry you're here. Do try O2 but do make sure you do it right. So many have tried and, because the method was wrong, have not gotten releif from O2 that I feel obligated to remind newbies that it probably won't work if it aint done right. If you're unsure after reading the info on this board feel free to email me. Best of luck.
Kip
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stevegeebe
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Re: Another bout of the beast.
« Reply #2 on: Jun 5th, 2004, 10:21pm » |
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Welcome.
Noticed you're from Memphis. Check out convention info.
Neurontin helped me big. O2 too. Try a hot shower too.
Read the stuff on the left.
Good luck.
Steve G
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mynm156
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Re: Another bout of the beast.
« Reply #3 on: Jun 6th, 2004, 1:14pm » |
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Hey Man welcome aboard!!!
Sorry you have to be hear!
Good Vibes and love those PF days!!!
[/glow]
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"Half of the modern drugs could well be thrown out of the window, except that the birds might eat them."
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Tim_Z
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Re: Another bout of the beast.
« Reply #4 on: Jun 6th, 2004, 11:14pm » |
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That's so familar it's exactly what I go through. I have problems finding meds that work. I'm sorry I can't give you any advice except hang in there. There are many here that know way more than I do. Welcome aboard.
Tim
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echo
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Chronic and still alive --- I Win!
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Re: Another bout of the beast.
« Reply #5 on: Jun 7th, 2004, 12:55pm » |
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Welcome aboard. Sorry you had to search us out., glad you found us.
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"If you love something, let it go. If it doesn't come back, hunt it down and kill it".
Proud Dad of a US Marine, and a former Marine turned Police Officer.
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Mikey
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Re: Another bout of the beast.
« Reply #6 on: Jun 7th, 2004, 1:22pm » |
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Welcome aboard Preemie!!
Many here have gotten help from the Verapamil/Lithium combo. Myself, i take Depakote 500 mg 3 times a day, and Verapamil 720 mgs a day with 900 mgs a day of lithium....I used to be on Neurontin at one time, but could not take the side effects of it any longer. I'm chronic, so i just get a little help from these meds if any at all sometimes.....I wander about it anyway........
What ever you do, please try the O2, and with a Non-rebreather mask, the mask is very important, and it's very important that you get a regulator that allows you to go to at least 10-12 lpm. Jack that O2 up to at least 10 lpm for about 10-15 mins and see if that helps ya, if not then up the flow on the regulator to 12-15 lpm for another 10 mins and see if that helps. Just like other meds, O2
don't work for everybody, but it does work for most. I have Hypoxemia, and it does nothing for me.
Good luck, and read all that you can here, and use the tabs to the left.
And finally grab an oar, and start rowing with us!!!
Mikey, 
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I love to ROCK very HARD!!!
CHRONIC and going crazy!! Want to come too?
Hope for PFDAN, peace and safety to you all!!
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Jeepgun
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Re: Another bout of the beast.
« Reply #7 on: Jun 7th, 2004, 5:44pm » |
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Welcome aboard. I had one hell of a corneal abrasion last weekend, after I got slapped in the left eye with a tree branch, while off-roading. I couldn't see very well for the rest of the day and it hurt like fire!! I put some Visine in it that night, went to bed, and the next morning, it was all healed. They eyeball is a very vascular area and heals with amazing speed.
Sorry that you had to come looking for us, but glad you're here. Welcome.
-Frank
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Charlie
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Re: Another bout of the beast.
« Reply #8 on: Jun 7th, 2004, 8:45pm » |
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Welcome aboard. You'll find some good ideas here and ways to deal with this horror and lots of support.
Trying cold or cool water is good too. Fairly violent exercise or running can help as well. It has a vascular component and things you do that affect circulation seem helpful. Here is the technique that works for me:
http://www.netsync.net/~charlies/
Good luck and let us know how you're getting along.
Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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Gator
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Re: Another bout of the beast.
« Reply #9 on: Jun 8th, 2004, 12:22pm » |
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Unfortunately, the doc is right. The meds do take time to get up to full strength in your body so don't give up right away. For a lot of things, don't just quit cold turkey, either. A lot of meds you have to taper off of, just like you have to ramp up on. Between the doc and your pharmacist, you should be alright there.
Like so many have said, sorry you had a reason to come looking, but damn glad you found us. Lots of good info in the links on the left.
Welcome aboard.
Gator
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Tiannia
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Re: Another bout of the beast.
« Reply #10 on: Jun 8th, 2004, 12:55pm » |
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I know that it sucks to hear, but yes most preventative do take time to build up.
I take Inderal and Nuerontin. I cant say that they are working. I want to get off the inderal and go to Vapramil, but I am hoping that the Neuro is willing to try new stuff rather just sit on the meds that I currently am on. I've taken Topomax (really hard time with side effect) and Gabirtil. Which did not show any signs of assisting after 4 month so we went off of it.
Just take your time and talk to the doc about everything. Go in with reports, finding, and articles about clusters. Make sure that he knows that you understand what is happening to you and that you want to work with him to get you the best help possible.
PF Wishes,
-Tia
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The curious paradox is that when I accept myself just as I am, then I can change. - Carl Rogers
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