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So weird situation...I know no one can definitively say if it's an allergic reaction, but I'm curious if it's within the realm of possibilities and if it's something I should call my doctor about.

i started on zonegran two nights ago.  The first night I had no issues.  Last night I took it around 9:30pm and had no immediate issues.  Around 2am I was dealing with itching all over--predominantly my arms, but also my scalp and areas of my chest.  Because I wasn't falling asleep anyway, I figured taking Benadryl wouldn't hurt--but because I did then fall asleep, I don't know if it was an allergy and if the Benadryl took it away or if it was coincidence.  I haven't changed anything else (detergent or other things that would irritate my skin), but I also didn't have any problems on the first night, so I don't know why it would cause problems on the second.  I also don't currently have any problems (a little over 12 hours later) and I assume the medication is in my system for longer than 12 hours.

anyone have any thoughts or suggestions on how to handle it?  I don't want to overreact and call my neurologist if it isn't possible to be related (because of time lapse, being fine in morning, or being fine on day one).  But I feel like if it's within the realm of possibilities, it might make sense.  (I could also do the take it tonight and see if anything happens approach, but that seems like a bad idea if it's possibly an allergy.)

thanks--I don't know enough about how drug allergies work to figure out if they are likely or even possibly linked or if it's random. 

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So Dr Google suggests it's at least possible that it's an allergic reaction and that you don't have to react the first time/it can be a delayed reaction.  I didn't get any sense if it's likely to be the case, but the fact that it's possible and that my neurologists office is already closed (I'm envious of closing at 4pm!) makes me think I should skip it tonight and call tomorrow.  Because I only have the two days experience, it doesn't seem like the usual concerns of having it in my system and having to gradually reduce of anything like that should be a problem.  I'd rather not bug the on-call person when it seems like skipping and calling tomorrow to figure out whether to try again is reasonable.

if it is an allergy, that's a shame because it's supposedly able to prevent migraines without causing weight gain, which is a side effect I've been stuck with recently.  It also makes me wonder if I'd be allergic to the sulfa drug family because although it's not one, it reportedly is fairly closely related and that would eliminate a bunch of possible meds if I continue this current trend of developing random illnesses in 2016. 

I would still be interested in hearing others thoughts or if anyone has experienced this (really with any medication, not necessarily this one).  Also if anyone thinks the skip and call tomorrow is a really, really bad plan because I apparently have a tendency to under-react to things!  (I've got about six to eight hours before I'd be trying to fall asleep.)

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Personally, I would skip tonight and call first thing in the AM. 

I would say to your DR (first thing in the AM) what you said in your OP:

Quote

i started on zonegran two nights ago.  The first night I had no issues.  Last night I took it around 9:30pm and had no immediate issues.  Around 2am I was dealing with itching all over--predominantly my arms, but also my scalp and areas of my chest.  Because I wasn't falling asleep anyway, I figured taking Benadryl wouldn't hurt--but because I did then fall asleep, I don't know if it was an allergy and if the Benadryl took it away or if it was coincidence.  I haven't changed anything else (detergent or other things that would irritate my skin), but I also didn't have any problems on the first night, so I don't know why it would cause problems on the second.  I also don't currently have any problems (a little over 12 hours later) and I assume the medication is in my system for longer than 12 hours.

 

But it is me who would skip tonight's dose.  I'm not saying to do it, but it is something I would do.

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Thanks Melissa and sorry for the delay in responding.  I completely got that I was asking more for an individual read and not really answers.

i actually unfortunately forgot the next day, but it was strangely beneficial because I had the same reaction at 4am this time although I hadn't taken it.  I had a psychiatrist appointment the next day and ran it by him and he pulled out his PDR (I have to admit I really appreciate how thorough he is) and I learned that the half life is over 90 hours.  So as he put it, it was well within the realm of possibilities that it was an allergic reaction still even though I hadn't taken it, particularly when combined with the fact that I hadn't changed anything else.  The not reacting the first but reacting on the second also made sense because the first dose would still have been in my system and that i would have added another on top of it.  We also had a somewhat theoretical minute or two on whether it was at all due to it being close to a sulfa drug (though not actually in that category) and that my mom had a severe allergic reaction to an actual sulfa drug.  I mentioned that Doctor Google suggested there wasn't a genetic link but he was skeptical and said there's nearly always a genetic component, even if not determining it, to a health issue.  He wasn't comfortable making the call 100% since he didn't prescribe it, but he recommending calling the neurologist that day and in the strange event I didn't reach him not taking it that night to be safe.

fortunately did reach the neurologist.  He agreed it was highly suspicious for an allergic reaction.  Neither of us wanted to write it off that quickly though because it has the seemingly rare combo of preventing migraines and not causing weight gain (and frequently helping with weight loss).  So he suggested not taking it for the weekend, seeing if the itching happened at all again, and calling him on Monday...if it stopped, we'd call it an allergic reaction but if it continued for the next few days it was more likely unrelated.  It didn't happen last night so it will be interesting to see!

(sorry for the long answer you probably didn't need--short version is your instinct matched mine and I mostly went with it)

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2 hours ago, dancesintherain said:

Thanks Melissa and sorry for the delay in responding.  I completely got that I was asking more for an individual read and not really answers.

i actually unfortunately forgot the next day, but it was strangely beneficial because I had the same reaction at 4am this time although I hadn't taken it.  I had a psychiatrist appointment the next day and ran it by him and he pulled out his PDR (I have to admit I really appreciate how thorough he is) and I learned that the half life is over 90 hours.  So as he put it, it was well within the realm of possibilities that it was an allergic reaction still even though I hadn't taken it, particularly when combined with the fact that I hadn't changed anything else.  The not reacting the first but reacting on the second also made sense because the first dose would still have been in my system and that i would have added another on top of it.  We also had a somewhat theoretical minute or two on whether it was at all due to it being close to a sulfa drug (though not actually in that category) and that my mom had a severe allergic reaction to an actual sulfa drug.  I mentioned that Doctor Google suggested there wasn't a genetic link but he was skeptical and said there's nearly always a genetic component, even if not determining it, to a health issue.  He wasn't comfortable making the call 100% since he didn't prescribe it, but he recommending calling the neurologist that day and in the strange event I didn't reach him not taking it that night to be safe.

fortunately did reach the neurologist.  He agreed it was highly suspicious for an allergic reaction.  Neither of us wanted to write it off that quickly though because it has the seemingly rare combo of preventing migraines and not causing weight gain (and frequently helping with weight loss).  So he suggested not taking it for the weekend, seeing if the itching happened at all again, and calling him on Monday...if it stopped, we'd call it an allergic reaction but if it continued for the next few days it was more likely unrelated.  It didn't happen last night so it will be interesting to see!

(sorry for the long answer you probably didn't need--short version is your instinct matched mine and I mostly went with it)

I hope the rash/itching doesn't come back.  Sounds like it was uncomfortable. 

No problem with the long answer :) Sometimes it really helps to know the background of something for it to make more sense of what is going on.

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All anti-convulsants can cause itching. I had it particularly with Tegretol, but I also had it with Lamictal (with no rash).

So if you are worried, skip it tonight, and call your pdoc in the morning. But it usually went away after a couple of weeks for me.

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Interesting, thanks.  I let my psychiatrist know because I conveniently had an appointment the day after it happened for the second time.  He said could be allergic or not and that the delayed response (not on day one but yes on two and three) could go either way because of the higher concentration due to its ridiculously long half life.  But he also said it could be random, so i could potentially stop, wait for it to get out of my system, and then try again and see if it happened.  He didn't mention the possibility of it being a thing that goes away though and I didn't know that about the anti-convulsant crowd.  He also wasn't comfortable making the call because he hadn't prescribed it, but was okay saying I should see what that doctor thinks.

Neurologist had same general idea.  Stop, see if it goes away, and then go from there.  I'm to update him tomorrow, so I'll mention the it might go away eventually possibility though.  Although it probably sounds like I'm a wimp, I am honestly not sure if I can handle it every night for several weeks.  I don't know how, but it wakes me up it the middle of the night in order to scratch all over and then I down the Benadryl but don't know if I don't notice it because of that or because it helps me fall asleep.  It really was pretty miserable and not going to stop it seemed...I gave it a good ten minutes before trying to knock myself out.

the result of the experiment was that might it didn't happen, the next day it did, and I've been fine since Friday.  But I guess that doesn't have to mean allergy and could just mean it got out of my system.  

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