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Topic: How to deal with shadows? (Read 1032 times) |
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ChrisUhl
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How to deal with shadows?
« on: Mar 15th, 2004, 2:40pm » |
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Hi guys. Although my current cycle is much tougher than usual, I'm getting used to it. And I'm back at work. But the constant shadows are killing me - not painwise. But I'm getting nuts.
My problem is that where I come from the general practitioner has to refer me to the neuro. And since I last had contact with my neuro 2 years ago, I need a new reference. I'll get that in about a week and then I can expect ending up on a waiting list of about a month. Guess that's the price you pay for living in a country with "free" medical care (well, at least I get free oxygen).
Of course I asked my GP if he had anything for the shadows. But he's a fair guy. He said he didn't know squad about CH. So he'd rather wait for me to talk to the neuro. Well, the shadows certainly aren't waiting.
Do any of you have any advice on what to do about the shadows? I can't use oxygen 24/7 and I can't use Imitrex since I need this for the attacks. Regular painkillers doesn't do any good as well.
Can I take/do anything except banging my knuckles against my temple every 10 seconds?
Thanks a lot and love to y'all for being fantastic 
Chris
PS. Regarding the recent topic about smoking this acually seems to soothe the pain of the shadows a little. But that might just be placebo - since I love my cigarette breaks.
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thomas
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Re: How to deal with shadows?
« Reply #1 on: Mar 15th, 2004, 3:30pm » |
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on Mar 15th, 2004, 2:40pm, ChrisUhl wrote:
PS. Regarding the recent topic about smoking this acually seems to soothe the pain of the shadows a little. |
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It seemed to help me, when I smoked also.
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| « Last Edit: Mar 15th, 2004, 3:30pm by thomas » |
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Melissa
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Re: How to deal with shadows?
« Reply #2 on: Mar 15th, 2004, 4:26pm » |
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Well, when I'm in cycle I take naproxen sodium (i.e. Aleve) for shadows inbetween cluster attacks with good results. Asprin, Ibuprofen and Acetomenaphen are not recommended as they can cause rebound headaches. In the past, although not recently, I used to drink a lot of hot, strong coffee and used to smoke too, which helped with the shadows
Hope this helps!
mel
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thomas
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Re: How to deal with shadows?
« Reply #3 on: Mar 15th, 2004, 4:30pm » |
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Oh yeah, you might want to try going for a short jog, that used to clear my head for a few hours.
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ChrisUhl
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Re: How to deal with shadows?
« Reply #4 on: Mar 15th, 2004, 5:04pm » |
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Thanks for the quick response. I'll try it all.
Thomas... I think I'll take that jogging advice serious. Especially since the advice about smoking will definately increase my cigarette breaks 
And Mel. Thanks for the advice about not using everyday painkillers. I've been desperately trying to kill the shadows with those (and kept on trying even though it had no effect). Sure is a bad decision if they can make things worse.
Ciao
Chris
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t_h_b
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Re: How to deal with shadows?
« Reply #5 on: Mar 15th, 2004, 5:36pm » |
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You can try caffeine, hot showers, cold packs. Maybe you could spare 1/3 of an Imitrex injection. Nicotine does help, too. Anything to shrink the blood vessels.
Someone recommended Excedrin migraine on another thread. I think the key there is the caffeine.
Shadows suck, I hope you can get rid of them.
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ChrisUhl
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Re: How to deal with shadows?
« Reply #6 on: Mar 16th, 2004, 4:10am » |
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Hey t_h_b
I can't use the 1/3 Imitrex. In Denmark it's impossible to get hold of whatever you need to trick the semiautomatic injector.
BUT this morning I got some great news. The neuro can take me in today. And I will sure try to get some caffeine pills on prescription. I'm not sure my stomach will love me if I fill it with 4-5 pots of coffee a day. So pills gotta do the trick.
Thanks for your help
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ave
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Re: How to deal with shadows?
« Reply #7 on: Mar 16th, 2004, 4:22am » |
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A very simple trick I use to get rid of encroaching shadows...
I pull out my nostril on the side of my head that hurts, and SNORT! Forcefully. It is a horrible sound, and impolite in public, but if you put your handkerchief over your nose, everybody believes you were just blowing it!
What is more, it usually helps. If it doesn't and I have no meds, it is time for all the other emergency measures.
Visit the OUCH website and check cluster resources; there's a whole list there of non-med measures to help out.
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Karla
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Re: How to deal with shadows?
« Reply #8 on: Mar 16th, 2004, 7:28am » |
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I used to take vicodin or percacet for the shadows and that worked fine but then I had an attitude change and decided to quit taking those and just live through the shadows and be grateful that they are not the kip 8-10 that I would get several times a day. I look at them as a break in the pain or a down time. I can still function and think through them although they can be annoiing.
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Karla
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Luke63
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Re: How to deal with shadows?
« Reply #9 on: Mar 16th, 2004, 5:10pm » |
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Hey Chris..lemme know to if anything works......I'm having them bigtime too..as well as slight"shocks".....hate those even worse. I didnt really want to hear about smoking since I just quit 2 months ago. SSSHHHH...maybe I should sneak a few and see if it works....if all else fails...just keep tappin the temple I guess.....like the rest of us.... Luke
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ChrisUhl
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Re: How to deal with shadows?
« Reply #10 on: Mar 16th, 2004, 6:16pm » |
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Well, just been to the neuro today (know I said I had to wait a month. But I got in on a canceled appointment). And that was fairly positive.
I just started a new Verapamil treatment. I tried that a couple of years ago without any effect. But my new neuro discovered that the dosage then was way to small. So I hope the new dosage will do the trick.
Luke - here's something for you. The trick is to contract the blood vessels (sorry if this is not the correct term. But I'm Danish so I have to translate all the Danish terms. Hopefully you get the idea). And there are several drugs that can do that.
Caffeine and nicotine are two good drugs. So I got my neuro to prescribe my some caffeine pills. You can even get those with caffeine and ergotamin in one pill (and ergotamine works as a preventive). As a smoker I obviously get some relief that way around. But to ensure a constant level of nicotine in my blood I have just bought some nicotine pads and chewinggum.
With the pads I'm hoping that the constant presence of nicotine will work on the shadows. I'll try the gum under an attack (you chew a few times and place the gum between your teeth and cheek). Not sure it'll work whatsoever. But hey. Won't rule it out until I've tried it.
So far the caffeine pills have worked with some effect on my shadows. Only problem is that you get a little hyped and that the effect wears off after an hour. I'm still not sure about the nicotine pads.
In conclusion - Luke get some caffeine pills. Try the nicotine pads (that'll also help you keep smoke-free). And I'll write a new post if I discover something else.
Hey - I start feeling as a medical researcher. That's a blast!
Ciao
Chris
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thomas
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Re: How to deal with shadows?
« Reply #11 on: Mar 16th, 2004, 6:19pm » |
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DUDE!!!!!!!!!!!!!!!!!! DO NOT SMOKE CIGARETTES WHILE USING THE NICOTINE PATCH!!!!!!!!!!!!!!!!!!!!! You are setting yourself up for MAJOR problems.
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ChrisUhl
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Re: How to deal with shadows?
« Reply #12 on: Mar 16th, 2004, 6:50pm » |
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Hey Thomas
Thanks for the advice. I actually discovered that on my own body earlier. With the patch on I lit a cigarette. And got really high and weird. So I'll just smoke at night when the patch comes off.
But again. Thanks for the advice. Obviously I should have mentioned that in my last post.
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t_h_b
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Re: How to deal with shadows?
« Reply #13 on: Mar 16th, 2004, 6:59pm » |
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on Mar 16th, 2004, 6:19pm, thomas wrote:| DUDE!!!!!!!!!!!!!!!!!! DO NOT SMOKE CIGARETTES WHILE USING THE NICOTINE PATCH!!!!!!!!!!!!!!!!!!!!! You are setting yourself up for MAJOR problems. |
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Don't chew nicotine gum wearing the patch, either. And follow the directions for the gum. You're not supposed to chomp on it until your jaw aches.
Nicotine is a deadly poison:
7.2 Toxicity
7.2.1 Human data
7.2.1.1 Adults
The mean lethal dose has been estimated to be 30
to 60 mg (0.5-1.0 mg/kg) (Gosselin, 1988 ).
7.2.1.2 Children
The lethal dose is considered to be about 10 mg
of nicotine (Arena, 1974).
That's ingesting just a couple of cigarettes' worth of tobacco--for an adult.
http://www.inchem.org/documents/pims/chemical/nicotine.htm
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| « Last Edit: Mar 16th, 2004, 7:02pm by t_h_b » |
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t_h_b
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Re: How to deal with shadows?
« Reply #14 on: Mar 16th, 2004, 7:05pm » |
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on Mar 16th, 2004, 6:50pm, ChrisUhl wrote:| So I'll just smoke at night when the patch comes off. |
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You keep absorbing nicotine through your skin even AFTER removing the patch. Washing with soap speeds up the absorption, so you're supposed to use only water.
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Virginia
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Re: How to deal with shadows?
« Reply #15 on: Mar 16th, 2004, 8:53pm » |
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Shadows? Take 3 Excedrin Migraine and call me in the morning. 
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JohnM
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Re: How to deal with shadows?
« Reply #16 on: Mar 17th, 2004, 9:14am » |
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You might try massaging Tiger Balm or Deep Heat into your temples to relieve shadows. It burns a bit but I find it helps a lot if the shadow is not too intense.
The advice on using 1/3 of an imitrex inj is also very good. I don't understand what you mean by "In Denmark it's impossible to get hold of whatever you need to trick the semiautomatic injector"
You don't need anything special. You load the auto injector as normal, then unscrew the top part and very carefully remove the needle and vial from the autoinjector with your fingernails. Scrape off some of the paper from the glass vial so you can guage how much inj you are going to give. Pinch up a good bit of flesh on the thigh and slowly push the needle in. It is not as bad as it sounds. Then you use a Qtip (ear bud) inside the vial to push the rubber plunger down about 1/3 to 1/2 way. Watch the fluid to judge how much you have injected. I mark the paper with a pencil in 1/3 increments.
Pull out the needle and very carefully re-insert it into the cartridge holder ready for next time.
Practise the technique with an old used up inj, water and an orange or apple if you feel you need to. You can pull the rubber plunger out of the vial with a long nosed pliers or tweezer to experiment. Just don't discuss this method with your doctors! They will freakout.
Message or email me if you need more help
Hope this helps
John
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Luke63
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Re: How to deal with shadows?
« Reply #17 on: Mar 17th, 2004, 9:19am » |
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Hey chris....no patch or gum while smoking...u are asking for problems. I am on verapamil...180mg..extended release as well as lisinopril....thats just because of my blood pressure. I got an Oxygen concentrator last friday through my insurance and its kept me pain free now for almost 5 days..I got to sleep with a canula on..and its worked for me. Have you ever tried oxygen? If you havent ..you should look into it. Luke
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Re: How to deal with shadows?
« Reply #18 on: Mar 17th, 2004, 8:48pm » |
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on Mar 17th, 2004, 9:14am, jmorgan52 wrote:| Pull out the needle and very carefully re-insert it into the cartridge holder ready for next time. |
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Note the word "carefully". It is possible to bend the needle if you are not careful when you insert the vial back into the holder.
Chris
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t_h_b
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Re: How to deal with shadows?
« Reply #19 on: Mar 18th, 2004, 12:03am » |
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Wouldn't it be easier to just squirt the stuff into insulin syringes? I don't think I could manage all of that manipulation with an attack coming on. Insulin syringes are available anywhere.
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JohnM
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Re: How to deal with shadows?
« Reply #20 on: Mar 18th, 2004, 1:55am » |
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I did consider transferring the stuff into insulin syringes at first, but after my succesfull first 2 attempts using the technique above, I decided that it was not worth it as it was even more effort and expense.
This way is so much easier than it sounds and only slightly more effort than just using the autoinjector. I might also add that it is in fact less painful too! The secret is to pinch the fold of skin hard while you slowly push the short needle in. I can do it blindfolded now
I carry a Qtip in my wallet so I can do it even when I am out of the house. Some people prefer to use a golf tee to push the rubber plunger down.
As for replacing the vial back in the holder - do it very gently with no force and it should just slide in. If it does not slide easily in then pull it back out and try again. You can use the "injector pen" to grip it to remove it if need be. If the needle bends slightly it can easily be straightened out, but it can be avoided by taking care.
This was a life saver for me during my last episode. It saved me both money and meds, and the stress of worrying about using up all my meds or "wasting them" on anything less than a kip8. I found that most of my attacks were stopped by 1/3 of a dose, but some needed more. I quickly learnt that if it was a really bad attack then I gave 1/2 a dose and that never failed me. I stopped bad shadows on several occasions with 1/4 dose, but that is more difficult to gauge with this method.
I also make sure that before giving the 2nd dose that I turn the vial upside down and gently push the plunger with the Qtip to expel any air as the plunger has a tendency to "relax" and draw air into the needle. Just wait until you see a tiny droplet. Injecting air is not a problem from what I understand as it is not intravenous, but it is easier to gauge the dose when there is no air in the vial.
Hope this helps someone.
John
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ChrisUhl
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Re: How to deal with shadows?
« Reply #21 on: Mar 18th, 2004, 7:40am » |
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Hi John
I finally got the idea about self injecting the Imitrex. Got an attack at work and wanted to try half dosage. First time I obviously didn't push the needle in far enough since Imitrez ran out all over my thigh. Second time I plunged the needle half way into my thigh - and the relief came 5 minutes later. All of you guys are right . Half a vial is just as good as a whole one. Wauv
Now the question is. How far in should one push the needle? Should it be half way in?? When I did this the area where I used the needle turned blue and it started bleeding a bit (in a way that it normally doesn't when I use the auto injector). So I'm thinking I might have hit a vein or something.
But thanks for the tip. This is both a money and life saver.
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t_h_b
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Re: How to deal with shadows?
« Reply #22 on: Mar 18th, 2004, 7:47am » |
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The needle should be all the way in. Try pinching up a thick amount of skin before you inject. It's supposed to be a subcutaneous injection--under the skin but not into the muscular tissue.
Glad to hear that you got relief with the lesser amount. Did you have reduced side effects too?
How much verapamil are you taking? Your doctor can put you on 1200mg if you can handle it.
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| « Last Edit: Mar 18th, 2004, 7:50am by t_h_b » |
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ChrisUhl
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Re: How to deal with shadows?
« Reply #23 on: Mar 18th, 2004, 8:04am » |
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Well, the side effects were the same as for the full dose. But the only side effect I get is a buzzing sensation all over my body. And I actually like that. A bit like drinking a couple of Mai Tais.
My doctor started me out on 120 mg Verapamil. But I'm supposed to increase that to 360 mg over the next week. If that doesn't work we'll go up to 480 mg and so on until the effect kicks in. Glad to hear that you can go up to 1200 mg. That leaves me with a nice margin.
Just to sum up about my arsenal of shadow fighting drugs. The nicotine patch works wonders. Sometimes the shadows fight back and take over. Then I send in the caffein pills. And they seem to kill of the rest of the annoying shadows. I'm not saying that the shadows disappear totally. But they are reduced to a such a low level that I can still perform at work. Only bad thing is - I feel like a junkie. Throwing pills into my throat all day. Plunging needles into my thigh. And patching myself up every morning. But hey - whatever works right?!
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FZfan
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Re: How to deal with shadows?
« Reply #24 on: Mar 18th, 2004, 2:24pm » |
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on Mar 18th, 2004, 8:04am, ChrisUhl wrote:| I feel like a junkie. Throwing pills into my throat all day. Plunging needles into my thigh. And patching myself up every morning. But hey - whatever works right?! |
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LOL. I've gotta say that, reading all the posts here that I have the last couple of weeks, I've chuckled several times thinking about what an "outsider" looking in would be thinking.
Non CH Person - "Oh my god! These people are a bunch of crazed drug fiends."
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