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  • Tongue swoll with lyrica. To ER

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    Old 11-17-2005, 10:47 PM   #1
    ladybird988
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    Tongue swoll with lyrica. To ER

    Hi. I took 50mg of Lyrica for a week and did great, few side effects, got my brain back after going off neurontin, and it took my pain down to about a 4/5, from a chronic 7, often 10. I had thought I'd finally got my life back.

    i asked to up the dose after a week hoping to get the pain down to a 2 or 3, and the doc upped it to 100 mg. It took my pain to a 3/4.

    I got pain relief right away actually on the 50 mg 20 minutes within taking my first dose. Same thing happened with the neurontin. immediate pain relief.

    The first day i went to 100mg though i began itching, then my tongue swoll to the point i couldn't form words around it easy. Squeezing headache. And i couldn't drink water as it tasted bad and was aggravating my tongue. I went into a deep sleep and my breathing slowed way down and i could hardly become conscious. THAT worried me.

    the next day the tongue started tingling, the headache grew worse, and i couldn't get water over my tongue as it just aggravated my tongue something fierce. I knew I was reacting bad so called the doctor who i couldn't get ahold of and the nurse didn't know much, but the pharmacist said i was having a bad reaction and to stop t he lyrica. I take fexofenadine for allergies every day and he said that was keeping the reaction in check but the next dose could cause breathing problems etc.

    I did stop the lyrica and took 50 mg of benadryl per the pharmacists advice but that did nothing. So, after calling the nurse and she told me to keep taking lyrica, and i told her the pharmacist said not to, i felt totally alone and unhelped, not to mention scared, as i know what anaphylactic reactions are like as i've had them, and then I did tte smartes thing and went to the ER. ER doc said it was an allergic reaction to lyrica and good t hing I came in. I told him I had a strange sore throat at the bottom of my throat in my chest area. he said that was probably a reaction to the drug.

    i spoke to my doctor today, after the nurse tried to keep me from talking to him directly! and i insisted on it, not wanting to go through her. I told her I'd been told to stop lyrica and she got mad at me for it! Insisted i take it after I told her I'd gone to the ER and been told not to! She got mad that I went to the ER! Frankly, I'm not gong to be able to continue with that doctor because she is the nurse he uses and though i like him, i cannot work with her. I cannot trust her judgement. I demanded she have the doctor call me and speak to me directly. She acted like i was wasting his time! Can you believe that??

    He said he didn't know why the nurse toldme to keep taking it. But he said I did the right thing stopping the lyrica and going to the ER.

    i am being treated with prednisone, benadryl and zantac to get the allergic reaction down. Doctor wants me not to take my gabapentin again til done with prednisone and over all allergic reactions. He said it would take 48 hours to feel better. 45 mins after taking prednisone and zantac, my chest tightness eased and i realized my breathing had been partially affected. not good. i knew I had to go to the ER because my body had started to crash and i knew from past experience t hat i was losing ability to fight off the reaction.

    By the way, i was given no info sheet on t he lyrica from the pharmacist with that med but the web site for lyrica said any tongue swelling is cause to go the ER and the back doctor's nurse did not know that! I hope the doctor educates her. She sure would not listen to me!

    So i am in level 8 pain now constantly, off all nerve meds, and of course the percocet helps very little. i told hte doctor I want to see a pain specialist. he agreed. he said I am very sensitive to these meds. i could never get over 200 mg of neurontin at a time due to reactions to it. i had placed all my hopes, my life, on this lyrica. Even when i knew my breathing was beign affected by it, I kept on it, because I felt it was my last hope. nOw that's sad, but that's t he predicament some of us are in, isn't it? plus, with my brain not working, I can't make good decisions anymore as quickly.

    what now? morphine? Spine pump? I can't go on like this. i really feel my life is over as i cannot handle the pain anymore, nor these reactions to the meds. I cannot think on neurontin and my pain on neurontin even with an opiate is a constant 6/7 all day long with spikes of 8 and ten. It's just too much and i can't handle it anymore.

    the opiates do practically nothing for the nerve pain. I am hoping a pain doctor will have more knowledge of these drugs, maybe have some other ideas, and if i do h ave another bad reaction, can help me better through it with a more knowledgable staff.

    i did lots of things wrong: knowing i was having an anaphylactic reaction and not taking it seriously, not going to the ER sooner, staying on a med i knew was bad for me, and being willing to die to get pain relief.

    I did one thing right: I listened to my body, called the pharmacist when i couldn't get the doctor, and i stood up to that nurse and did not do what she said to do! and i went to the ER finally!

    Please, if any of you have tongue swelling with Lyrica, it says on their website to go to the ER. It's serious. ER told me if i had trouble breathing, or still do, call 911 and not try to get to the ER but use an ambulance.

    Anyways, wanted to warn people. Tongue swelling/breathing difficulty is a rare occurence. but it does happen. wish me luck with a pain doctor. Thank God i listened to my inner voice and not that nurse. FYI: i have nerve damage in my back/leg from herniated disk. And walk with a cane. Am told nothing can be done for the nerve damage.

    Good luck to all of you. Maybe this message will save someone's life.

     
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    Old 11-18-2005, 12:24 AM   #2
    Gabe30
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    Re: Tongue swoll with lyrica. To ER

    Wow ladybird......

    I thank God that He gave you the intuition to go to the ER. I take 200mg of Lyrica/daily. I better go look in the mirror and see if my tongue is swollen.

    Lyrica has helped me with my nerve pain as well. I'd say it handles about 70% of my nerve pain being on 200mg of it. I've been to Lyrica's main site and must have missed the warning about this severe reaction.

    I'll pray for you and ask God to give you relief from your nerve pain until you can get something else to treat it.

    Thanks for sharing your story.


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    Old 11-18-2005, 08:26 AM   #3
    Tirzah
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    Re: Tongue swoll with lyrica. To ER

    Thanks Ladybird for the heads up. I am still taking 300mg a day and so far I'm ok. I see my pm dr on Wed. so if he ups the dose I'll be listening closely to my body.

    Tirzah

     
    Old 11-18-2005, 10:01 AM   #4
    ltedeschi
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    Re: Tongue swoll with lyrica. To ER

    I also could not get relief from medication. I have RSD in both legs( extreme nerve pain) I finally had all I could take and had a Spinal cord Stimulator put in and it took almost all of the pain away. I wouldn't give up this machine for 1 million bucks.
    I know it sounds drastic but when you have to live with that kind of nerve pain which doesn't respond to meds its worth it.
    Good luck.
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    Old 11-18-2005, 10:26 AM   #5
    tina76
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    Re: Tongue swoll with lyrica. To ER

    What an awful experience! I am not on the same type of meds as you but did want to tell you that I can sympathize with the "bad" nurse problem. Mine treats me the same way. Every time I talk she uses this tone as if I should NOT be calling, etc... always tries to brush me off. Then, after she talks to him and finds out that I SHOULD have been calling and she has to call me back and give me instruction she is always sweet as pie. It is SO annoying. I hate calling there. I love my doctor though. Wouldn't want to give him up. Good luck in the future!

     
    Old 11-20-2005, 11:52 AM   #6
    friendly_one
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    Re: Tongue swoll with lyrica. To ER

    Hi Lady...sorry to hear you are having such pain. I have a question.....if opiates do not do anything (which they usually don't for nerve pain) do you really think Morphine or a pain pump will help??? Have you tried talking to your doc about a spinal cord stimulator? Also, have you tried any anti-depressants like Elavil? Just a suggestion. I hope things get better soon.

     
    Old 11-20-2005, 03:41 PM   #7
    Fibbles
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    Re: Tongue swoll with lyrica. To ER

    I had an experience very similar to yours, but it was caused by Imitrex (for migraines). I took it on X-Mas morning 1997 and it pretty much swelled my face and throat. Luckily my dad was there (he was a doctor) and Benadryl lessened it. Swelling up is scary!

    The doctor that gave it to me never did a real exam, when he heard me say "headache", he heard migraine. Years later the headaches were shown to being caused by clogged mucuous in my sinus cavities because of my crooked septum. Surgically straightening it fixed them, but now I get excessive drainage most of the year.

     
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