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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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09-05-2012, 10:07 AM | #1 | ||
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Hi there,
I have mg, and use loads of meds. Since prednison (now 2 years nonstop use) i experience psychiatric problems. Since march this year it's severe, I think I even have psychoses or something similar. My head is exploding, and nothing I do (talking, exercises, whatever, textbook psychologic stuff) helps. because it is not psycholical, its fysical. I tried it, but it only makes me tired and weak. I say my head is "on fire" i dont get my thoughts and my rational me is slowly dying, im going crazy. Anyway, loads of psych drugs have contra indications with mg. I think the best meds for me would be benzodiazepines, but they have clear contra indications, and I still have loads of weakness. Sure, its less severe then it was (because that was breathing tube, not even able to whipe my own *** and liquid food theough my nose), but still, i cant do anything without getting severly tired or weak. So i dont think benzo are a possibilty. I want to ask, do you have experience with benzo and mg? Thanks |
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09-05-2012, 07:08 PM | #2 | |||
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I got on benzos and I went crazy. My respiration was way down at night and this probably caused the problem. I had severe memory loss. I made very bad decisions. It took me about a year to get back to normal after I got off of them. I strongly advise against using benzos unless your quality of life without them is so bad that you don't wish to exist. Drink beer. Smoke pot. Just don't use benzos.
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Celeste |
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09-06-2012, 02:31 AM | #3 | ||
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Thanks so much celeste.
Well, I do have moments I really wish to stop living. I tried anti depressants, but they wont help against those weird thougts, anxiety, compulsive stuff, etc. I already drink beer Doesnt weed has a contra indication with mg? I thought it also made you weaker. I still have breathing problems everyday, so I dont want them getting worse (it doesnt seem like such a nice way to die) And, your experience with those benzo's, is that while you were already suffering from mg? |
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09-06-2012, 05:26 PM | #4 | |||
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Good question. I wasn't diagnosed with it yet; I think I already had it.
I am worried that you are so depressed. You need to get some help on that. The benzos won't help with depression. They will help with anxiety. I do better without any psychoactive drugs, but then I am not severely depressed. I get relief from depression by playing music.
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Celeste |
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09-06-2012, 08:50 PM | #5 | |||
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Quote:
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09-07-2012, 02:38 AM | #6 | ||
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To Celeste,
Thanks, I dont think Im really depressed, it's more episodes of depression. For example, today I woke up totally afraid (of....??) and my head just keeps going and going and going, "what if..... What if...." it's horrible. I tried everything to get my mind of things, but everything just seems to give me weird thoughts. Hugging my dog gives me thoughts: 'what if he dies' and Im totally psyched out for hours. Watching television? 'Im not as pretty as that girl / that commercial makes me cry / the news is making me scared / .... ' Listening to music? Overemotional reactions, crying, and thinking I have to make music too! Well, yeah, crazy. So i want something to make my head dizzy, numb, whatever. Just to give me a rest. I already told my neurologist loads of times, this prednison is making me crazy (note, I also have fysical cushing problems). To PB, thanks I didnt know that. So that's a real contra indication, those benzo's are. And what about antipsychoses stuff? Like, haldol or something? Last edited by RavenC; 09-07-2012 at 09:15 AM. |
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09-07-2012, 08:19 AM | #7 | |||
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Just don't suddenly stop the steriods. I assume you know that you have to wean off of them if you stop. Please work with your doctor.
You need to talk to your doctor. You may need a referral to a psychiatrist that can sort out what drugs you need to take. Hang in there.
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09-08-2012, 06:35 AM | #8 | ||
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I know you cant just stop it. A few weeks ago i already tried taking a tiny bit less, i got so weak i couldnt even stand up or talk. Well, "work with your doctor" i try, but it seems like he's just ignoring me at the mo... I dont know. And i already got a referral for a psychiatrist, and already signed up for one weeks ago... But still havent heard from them |
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09-08-2012, 12:13 PM | #9 | ||
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You know yourself that this isnīt how you are supposed to be feeling. Your dog ought to be at least one single comfort to you at this time. We respect that you say talking wonīt solve this complex problem that started with your medications - but if it makes a difference then we are here for you. Anacrusis |
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"Thanks for this!" says: | RavenC (09-09-2012) |
09-08-2012, 12:44 PM | #10 | ||
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Elder
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I read these posts, and I just wanted to offer some support. I don't have MG but I know what it is. I hope you can find a doctor who will not only prescribe what you need (not benzos) but who will listen to you and act for your betterment. Sometimes you have to squack long and hard to be heard, and I am all for that, if you are feeling like you are not listened to. Steriods, can and do cause some very unwell feelings. It may even contribute to you feeling worse. A specialitst with MG, and a Phychiatrist involved with your case, can work with you to help you feel better. I also go to a physiatrist. She deals with my pain, and the body on a cellular level. Sometimes when we feel stuck, or in a bad place, moving another direction may be called for.
Depression and anxiety are not fun. You are not alone, I care. I would want improvement, and a deeper dicusion with my doctor, or I would find a new one. I know that you can feel better with the right care, you have to seek it out sometimes. I know you have tried things to help, like hug your dog. That does help. Please try reading again, to try and distract your thoughts until you can get some more help with this upcoming psychiatrist. I will keep you in my thoughts and prayers. ginnie |
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"Thanks for this!" says: | RavenC (09-09-2012) |
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