Benzo's possible?
 

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

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.

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 :p

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:wink:)

And, your experience with those benzo's, is that while you were already suffering from mg?

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.

I was and continue to be addicted to Ativan...a short-acting benzo... long before developing MG symptoms, being diagnosed with MG and getting on Prednisone and Mestidon just a month ago. Benzo withdrawal symptoms cause stress (to say the least) and aggrevate MG symptoms. But, Benzos are acetylelcholine antagonists which work against what we are trying to accomplish with Mestidon. We want to power up these muscles, not relax them. So, I am what you call stuck between two hard places. But my advice to you (as a non-MD) is discuss this with your Neurologist and your Psychiatrist. I doubt very much that either of them will write you a script for any benzodiazapine under your circumstances. There are probably other meds that can give you relief without elevating your risk of an MG crisis. Just my take. Good luck.

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?

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. :hug:

Thanks.
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

Hi RavenC.

You know yourself that this isn´t 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 won´t solve this complex problem that started with your medications - but if it makes a difference then we are here for you.

Anacrusis

Hello Raven
 

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

Thanks both.
Yeah ill try the distraction, but i dont know where to find it :(
I really have the feeling my head is to big for my skull.
I don't even get a rest when Im sleeping, my dreams are totally messed up.

I also believe this prednison isnt good for my mg: first because I have severe stress all the time, and stress isnt good for mg. But I also see my muscles are slowly declining, especially my arms. And my belly and head are getting bigger everyday, o I hate it so.

I really am suffering and i really wish a doctor would help me. I asked so many, most of them say they wish they could help me but it is to difficult for them. And my neurologist thinks im to "good" for ivig, but to "bad" to lower the prednison even a tiny bit. And the psychiatrist still hasnt called back.
I just feel akward, fysically and mentally and well, :(

I was on 60mg of Prednisone and was going down hill fast. I was at the point I could barely walk. I went to see my neuro-muscular doctor who I see about every 6 months. He immediately said I had to get off Prednisone right away. It was killing the muscles in my legs. He dropped me 10mg that day. He said Prednisone will do one of 2 things. It will be a wonder drug for you or kill you. He said I was one of those people that can't take it. I am down to 20mg and my legs have recovered. We are now at the stage we can only reduce 2 1/2 mg at a time so it is going to take a while to get completely off. Of course I had the usual effects fat face, hump on back of neck, water retention, most of that is gone.
Mike

Raven

What is dose of prednisone you take?

Hi Raven
 

I am listening, and I do understand about the prednisone. I was in a trial study, and had to use it on and off. Not so hot, and definately mood altering. I really wish your doctors would take another look at you, talk together, and try something else. Can you get in for another opinion? It is like they are just shaking their heads at at a loss as to what to do to help you. There has to be some other kind of help. I wish I knew more about mg. to help you.
I do know about prednisone, which is why I have great empathy for you. I do care. I am one of these people who do read. I am going down on morphine, a horrible process, and use it as a distraction during episopes of sweating and chills etc. Most of the time it works. I hang it up for a couple of hours, and just go to bed with my book. Hope you can find that distraction to help you through this time. ginnie

Hi RavenC

Some possible ideas:

1) Print out the responses in this thread about Prednisone (with permission from the posters) ask to set up one emergency appointment with the neurologist to talk about the dosage and effects of your medications. You can also ask your doctor for a referral to another neurologist or set up a private appointment in another town/city if you can, which may end up being worth it.

2) In case you haven´t tried, ask for the appointment with your psychiatrist to be brought forward. It is possible to do that.

3) Perhaps see about changing your doctor. If you clash with a doctor on core philosophies and core values you will only ever get so far - and with as many symptoms as you have you certainly don´t have any extra energy to use on anything else. It´s tiring enough to carry your own backpack on a really long hike – never mind someone else´s as well! With a good doctor it feels like it is not that much ´work´- it still can be a really long hike - but without the backpacks, and that makes a BIG difference! :)

It took lots of trial and error to find my new doctor. He ignored everything that had been said in the past, prescribed me Mestinon – said it was a really exciting thing that it was working, referred me directly for SFEMG testing without consulting the neurologist who said I was just lazy and told me not to worry that we would ignore him and find a new one!

That´s what it should feel like, I think.

Keep in touch with your progress

Anacrusis

Thanks all :)
Well, yesterday I had an awful day. I really had to drink enough, as not to get dehydrated! I cried so much.
And I think I'm getting an eating disorder or something, sometimes I just can't stop thinking about food...I crave weird stuff and I HAVE to eat it, I'm so hungry and think about all the foods. And then I cry because I already gained so much weight, and the stretch marks and my huuuuuge face and ....

@Ginny; yeah already been to a second opinion, he also just says "prednison = good for mg". They just only look at "their" disease. But he also said trying another medicine (ivig), but my own neurologist won't try it. And I can't go and get the other one to be my neurologist, because it's to far from where I live.

@Ana: Yeah, I'm already thinking about changing doctors...because well, I really think this is not the way for me. But I've already seen so many, and don't want another disappointment you know? But the end of this month I have an appointment, and Ill take my whole family with me!!!
I called psychiatrist yesterday, "we will call you to make an appointment...if we accept you". So...waiting.

Hi Raven
 

I so know about not wanting to go try and find yet another doctor. It is the Gerbil wheel of going round and round, and you want to get off the ride.
If it meant your health and sanity, travel, do what you must to have better quality of life. I interviewed ( notice I said I interviewed) 4 pain specialists before I found one I wanted or trusted. One was so full of himself I received a 20 minute lecture, on the dangers of medications, and I never got to say a word. NOWAY....I don't want you to stop until you find the right combination of doctors that can help you. That IVG I have heard of, and I think there has been success with it. I know you have done the research on it. Did your Neuro give you a reason why he didn't want to try? I have two docs. now that don't agree. I tend to not do anything unless I get them in agreement, and yes I push them talking to each other. thats a miracle!
I wish you better days Raven. We may not have the same conditions, but I do have empathy for what you are going through. I do care. ginnie

I would suggest getting some actual psychiatric help. Your symptoms may or may not be caused from the meds, but in any case, with a good psychiatist and counselor on board, you could get someone to help advocate for you with your neurologist and provide coping techniques for you when the anxiety gets bad.

There are instances of steroids unmasking bipolar disorder (it happened to the newscaster Jane Pauley) and other psychiatric problems. Your situation sounds pretty complex, so it might be time to call in the experts.

Benzos are a like putting a bandaid on the issue. It covers it, but the wound is still there and the bandaid will wear off eventually. Drinking alcohol is also not helpful in the long run. Both can be really addicting and not particularly good for MG.

Good luck!

Probably one of the biggest things that a psychiatrist can do is to figure out whether the problems are caused by drugs, and if so, which drugs.

Yes, I agree with Southblues. However, sometimes simply eliminating the drug does not eliminate the symptoms, so in that case, having someone on board with knowledge on the subject could be invaluable. Life's too complicated as it is to live in emotional agony if not necessary.

Ah, well.
Im still waiting, but I really dont want to go to a psychiatrist.
Why? Because I have high standards on privacy.
They already know so much about me, and I dont want them know my thoughts :(
I can just say my head is messed up, i cantbe happy again, without actually going deeper into the subjects of the anxiety? Because hell, if your sick you cant have anything to youraelf anymore?
I believe its just not the way it should go.

I think "coping" with these problems are not an option. Thats what my neurologist said: its so you can talk about it. But thats not gonna help, because i talk about it everyday. But it doesnt help. This morning, i just had a feeling of intense anger, and i truly no idea why!
If these medicne caused me to poop my pants everyday, would they give me daiper?

@4 eyes, but there is no wound. Wish there was, then we could try and deal with it.

And anyway, im sure the problems are caused by the meds. I also have high bloodsugar, high cholesterol, all the cushing peoblems imaginable.
Whether it does or does not go away when stopping these meds, I dont know.
But if it wont go away, and the medicine caused irriversible damage, then my life would be over.

Hi Raven
 

I am sorry you are suffering. That anger, is justified. There are times in a persons life to feel that way.
I don't blame you for wanting to keep some of your thoughts to yourself. It is hard enough thinking them. In this case, because you don't know what really is going on with the medications, that more than the psych evaluation, is really the reason to bring this profession on board. I don't enjoy talking to someone about private issues either. However if my meds. had something to do with how I felt, I would agree to go that route. I wish I could support you more in some mannor. I am here for you Raven, and I do feel your distress and pain. There are people who do care about you, and I am one. I hope this day brings some comfort to you. ginnie:hug:

:confused:........:hug:.....:hug:......:hug:...... :)

Hello,

Just wanted to add my thoughts and experience of benzos since that was the initial topic.

Im at the tail end of a very long and even more painful taper from various benzos. In a few weeks, I'll be completely off after over 12 years.

Benzos are not meant to be prescribed for over a couple of weeks and they have an extremely high potential for addiction. Some people can terminate them with only minor difficulty. And then there are those of us who suffer enormously.

I would urge you not to go down that path. They will just make everything much worse.

I'm sorry you suffer.
Flip