Occipital Neuralgia and other Cranial Neuralgias For discussion of Occipital Neuralgia, Glossopharyngeal Neuralgia, Nervus Intermedius (or Geniculate Neuralgia), and Vegal and Superior Laryngeal Neuralgia. (Trigeminal Neuralgia has its forum below.)


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Old 01-04-2009, 09:10 PM #1
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Unhappy Fentanyl + Prairiegirl = disaster

So I've been on a fentanyl patch for about 3 weeks. About 5 days ago, I started feeling a bit itchy on my scalp. I didn't think anything of it-mainly ignored it.

Last night, I was getting ready to have a shower when I realized I was covered in hives. I called the GP's office (doc on call) and talked to one of the docs in my GP's office. At first he was trying to tell me it was likely a food allergy because "it's that time of year" when people are eating things they don't normally eat. I quickly put that idea aside-I haven't been out to anyone's house for any social gathering at all (we are pretty much snowbound here right now, plus I had friend in for Xmas-I sdidn't go out.) and I am also watching what I eat because I do WW. I have not eaten anything I don't normally eat.

I did however explain that I am prone to drug allergies and that I can be okay with a drug for awhile and then BOOM! I get a major reaction. This was well on it's way to being one and the only thing new to my system was the fentanyl.

We agreed I should go off the patch and go back to the morphine I have here in pill form till I see my pain specialist on the 12th. (for the lido drip.) I will also go see my GP mid-week if the itching, etc. doesn't start to settle. Usually when this happens, I need a course of steroids. (oh joy!) In the meantime, I could also take Benedryl.

I took the Benedryl last night, but I LOATHE the way it makes me feel and quite honestly, I prefer to have the itching. In the meantime, of course, the ON is trying to kill me. My head is really hurting right now. I just took another morphine pill about an hour ago and am waiting for it to kick in. I skipped dinner-I can't imagine eating right now. UGH!

The worst of it is that I JUST shelled out another $40 for 5 patches (refilled my perscription) on Thursday and had not even opened the box. Yet another thing to add to what I sarcastically refer to as "the graveyard of useless perscriptions". I have a big basket on my dresser filled with pills I can no longer take for a variety of reasons. I am afraid to dispose of them till I am SURE I am not going to need them because they are all almost full bottles and all fairly expensive. If only I could get a refund!

Anyway, this would be reason #362 why it sucks to be me!
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Old 01-04-2009, 11:25 PM #2
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PG how bummed I am to hear the patch isnt a help for you.
I do know that before i could even be considered for my stimulator implant i had to be on every med they had and have the med fail ..I had to reach the end of the med line before any other option was offered. as i siad I had option of morphine pump implanted in back of head only the morphine didnt help one bit by then i was suicidial and it was either doc help or i end things.cus I was not going to live i couldnt live another month like i was. NO JOKE! keep searching and trying and know you arent alone. do not give up on o.n.s. red tape is thick it takes a bit of cutting and sawing to get threw be persistant and patience!! hang in there my friend .
have you tried a bath with baking soda or epsions salt?
praying your allergic reaction and rash go away a.s.a.p.
and that good things begin to happen for you this month.

PEACE
BMW
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Old 01-05-2009, 05:10 AM #3
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PG, I've had allergic reactions like that before and no one could figure out what the cause was. I was itching so bad that I was bruising myself from scratching and I was covered head to toe with hives, its no fun. I was hoping that you were getting some relief from the patches since you hadn't posted anything negative about them. Do what you can to get it under control even if you have to take benedryl. Try some moist heat or ice for the ON. I know its not the greatest, but it may get you a little relief I'm sending low pain wishes your way. Take good care, EE
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Old 01-05-2009, 04:28 PM #4
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"i couldnt live another month like i was."

I can totally relate. It's no wonder they refer to this as the suicide headache. You just wish you could die so it would stop hurting. I have now had this same headache for TEN months and counting. I bounce between ignoring it (which is my best coping mechanism) and feeling utter despair that I am ever going to find a way to make it liveable or stop altogether. Like I said, the last discussion about the ONS was so depressing that I just came away feeling like the whole thing was hopeless.

So..I see my Gp tomorrow about the hives. We'll see what she can do about it. Last night I had such a wicked headache I took 3 morphine pills, an anti nausea pill and a sleeping pill. I lay awake most of the night. At midnight I got up and got some digestive biscuits just to put something in my stomach since I had skipped dinner. If there wasn't such bad snow and road conditions here, I would have gone to the hospital last night...not that I think they would have been able to do much for me, other than keep me waiting for hours to be seen...

I trudge on...
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Old 01-05-2009, 04:33 PM #5
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Quote:
Originally Posted by EE03 View Post
PG, I've had allergic reactions like that before and no one could figure out what the cause was. I was itching so bad that I was bruising myself from scratching and I was covered head to toe with hives, its no fun. I was hoping that you were getting some relief from the patches since you hadn't posted anything negative about them. Do what you can to get it under control even if you have to take benedryl. Try some moist heat or ice for the ON. I know its not the greatest, but it may get you a little relief I'm sending low pain wishes your way. Take good care, EE
I hadn't posted in awhile because I had my hands full with my son being really, really sick, the holidays and some deadlines I had to meet for work. I was up to my ***** in aligators.

The patches were okay for about the first 2 weeks, aside from some nausea which I had meds for. My ON was a bit better. Then the itching started and now I realize I shouldn't have ignored it. I think part of why that happened was because with my MS I have altered sensation and something really has to be bad before I feel it. (With the exception of my hands which always feel pain, even when that's not really the correct response.)

Anyway, I am 99.9% sure it's the fentanly doing it. Since I stopped the patch on Saturday, it's not gotten any worse.

THanks for checking in on me.
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Old 01-08-2009, 06:04 PM #6
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SO I have been taking Reactin to get rid of the itchiness and hives and it seems to be helping.

I go for the lido drip on Monday and have to be there for 7:15 a.m. We are going to have to get up pretty early because we're going with the morning rush hour. UGH!

Has anyone ever had this before? Just curious.

I am taking my ipod and lap top to keep myself amused while I wait 3 or so hours for the infusion to be done.
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Old 01-08-2009, 06:47 PM #7
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No experience with lido drips, but the patches rock. I'll keep sending positive vibes your way and great plan for the lap top and ipod, it'll make the wait a lot easier.
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Old 01-09-2009, 11:40 PM #8
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Good news! Through a twist of fate, I have managed to be the proud new owner of a portable dvd player. It's a long story, but the important part is that I have this new toy to keep me amused when I go for my lido drip on Monday. I think it takes about 3 or so hours and it will be nice to be able to watch some movies while I am doing it.

DH gave me a video store gift card for Xmas and they had big sales on DVDs so I bought a couple of old favourites. I am saving them for Monday.

THere was a guy who I crossed paths with in the summer who was having chemo at the same time I was having a 4 day steroid infusion and he said the dvd player really helped him get through the chemo. I sure wish I'd had one when I had IVIG. That was a 6 hour treatment 3 days in a row!

If only people who are well had any idea the stuff we go through just to be able to function sometimes-I don't think most of them ever think about the people in the hospitals they drive by every day.

Anyway, it's nice to have a new toy!
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Old 06-04-2009, 12:35 PM #9
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I have donated my unused med equip to group called project cure. they give them to aids patients. they may take them.
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Old 06-06-2009, 08:15 AM #10
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Originally Posted by oliverjenniferm@aol.com View Post
I have donated my unused med equip to group called project cure. they give them to aids patients. they may take them.

I am in Canada. My pain specialist will take them, if I can remember to take them with me to her office. I keep forgetting.
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