Beware of playimg with doses!

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Alyoop

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Oh silly silly me. Just cause I am a nurse, I should not play around with my medication.

Just got my drivers Liscense back a month ago (I have epilepsy). I was so excited. No more getting rides with people and waiting for hours for rides home from worK.

I decided that I would stop my Baclofen abruptly..... My head told me that I should see if it was really working or just a placibo effect thing going on. Then I suppose if I contined as normal I would not have some sort od creepy MND thing going on. I know it is illogical and stupid.

I ceased up and after 24 hours realised I should get back onto it. I went POW back up to normal 60mg day. Then I went to watch my sons soccer and had a seizure, very embarrassing and liscense lost again.

Hubby did suome research and found that Baclofen had antiepileptic effects alobng with sometimes causing seizures. Which ever I skrewed up and he is rather annoyed.

Soooooo if you have epilepsy be careful useing Baclofen......

Stupid stupid me. I should no better.

aly
 
gee sorry about my spelling and poor grammar. I am at work waiting for a lift home and typing way too fast. Don't want to be seen as well.

Ha ha Aly
 
Aly, here's hoping the level of Baclofen is now just right. You aren't alone in having wild ideas that suddenly all will return to normal. In fact, the thought probably occurs to most of us from time to time. Your only problem was acting on it. That, and having a husband too smart in this instance for your peace of mind.:?: You got caught, which is a bummer; but you shared it, which gets you a hug of understanding.
(((HUGS))))
Ann
 
Thats a total bummer Aly. I became aware of the seizure thing before I started taking baclofen. I have to be careful with meds because I have a history of seizures (caused by SRI antidpressants). I certainly do understand your frustrations and hope things get straightened back out soon.
 
Oh silly silly me.

I decided that I would stop my Baclofen abruptly.....
Soooooo if you have epilepsy be careful useing Baclofen......

aly

Epilepsy or not... you should never abruptly stop baclofen (or many other of these muscle relaxants/anti-spasticity drugs). Unfortunately as you have found out that can trigger seizures, hallucinations, and some other ugly things (regardless of epilepsy). You have to slowly taper them off.

So sorry you learned this the hard way!

Brian
 
oh alyoop,i hope your feeling a little better soon.
i did mention you should never do that in our discussion on baclofen,it can cause siezures.
as baclofen helps with myoclonus and you can have a type of epilepsy called myoclonic siezures (which sounded like me when i had severe myoclonus,plus had odd siezures throughout my life since baby) its bound to help with these.
take it easy when you get home,rest well.
caroline
 
I knew all that stuff, but still I was stupid. I just wanted it all to go away, and I suppose I subconciously thought stopping my meds was a way of burying my head in the sand. Had an appt yesterday with The MND nurse up at the hospital and had a good howl. I feel a bit better now.

I have simple partial seizures , but had a complex one and passed out completely thus hitting the dirt. ASlways cry for a few days post ictal.

My hubby is so negative about the outcome of my condition. This forum has helped me just type stuff out instead of shareing with him. He even wants to give up work and spend more time with me. I just want to work more . I am happy helping people, sad if I am stuck at home.

Daughter is coming back from UK in 2 weeks to get married. Cant wait. I miss her soooo much. Dam tears are here again damn it

Need to cuddle my cats :0
 
Alyoop,

Has your husband always tended to be negative? Perhaps the stress of the diagnosis has exacerbated already negative inclinations. He needs to see a counselor to deal with his fears. He seems overwhelmed by it all. True, Mds are reluctant to get psychological help but in this case he needs to realise that his attitude isn't helping you. He sounds depressed to say the least.


ND
 
I mentioned that he may be depressed last week, but he said NO! You are right he just does not know what to do with himself. He seems to take endless time off work. In fact he has been at home more than at work since my diagnosis (or part thereof) back in April.

I went to England for 3 weeks soon after finding out, in the hope with me gone for a bit, he wouls settlr bsck into work, but when I got back in mid June, he had been at home for 2 of the 3 weeks he was away@#$#@

He thinks I am going to die and he is heart broken. I feel so sorry for him. I am not at all too bad. Have a bit of spasticity and limited in getting around, but still I manage really well. I feel I have years of mobility left. I just need a cane occasionally when the groung is uneven. I have no pain at all unless I walk a bit too fast. I feel far from Dying!

I think because he is a neurologist, it is just all too close to home, he knows too much, so he is probably worse off than me. I have accepted the diagnosis, and will make the miost of what I have,

Thanks for being such a honey
aly
 
Gee what crappy typing again. sorry. I should get my glasses fixed.
 
alyoop,tell your husband i am in my 11th year and going strong.
also i know some pls'ers in there 60's and 70's who have had it 20+yrs.

do you think he fears your diagnosed chanding to als?
he should know after 5yrs that is very very unlikely.

quite ofton its friends and family who grieve more than the person who is ill.
 
I agree with Olly 100%. I have been on this train since October 1995, and while life is a few notches harder, I don't look to be leaving anytime soon. I have done things since onset that many able bodied people will never do, most of them in a wheelchair. I feel like I live life more fully than most people I know, with a variety of projects I am engaged in and a fascinating conversation with a stranger almost every time I go out. For my friends and family it seems worse, I think because they do not share the little victories throughout the day, and hear about my progression in bunches. My husband takes it especially hard.

Alyoop, I remember reading that you are a christian in one of your earlier posts. Is your husband? Mine is an atheist, and that exascerbates the attitude difference between us.
 
Becky & Olly thanks. You are right. It is way harder for people around you. We have to face the struggles and deal with them. They can only watch. I could not bare to watch hubby going through this, he would nit deal with it at all. Its better that it is me. I am only 3 years down the track from first symptom, But the retrospectoscope says maybe 5 with the terrible cramps that started then stopped. He definitely fears the ALS thing. I do have subtle LMN signs, but due to the fact that it is mainly UMN that is why my neuro is saying that it may be PLS. He also wants to do 12 monthly EMG to catch a change. That kind of tells me that he is expecting it to speedup. I have refused to see him for another 12 months as I want to get on with things. My mobility does seem to be getting a bit worse, but everyone with PLS must slowly get worse as well. There is only one person with PLS in this region and by 6 years he is in a wheelchair and using a PEG tube. Thats freaky.

Becky yes he is a Christian, but he is going through that blaming God thing I think. When we were out walking a couple of weeks ago he saw a rainbow and said that he was feeling really sad and a bit let down. That is rubbish. God does not rain this stuff down on us, but gives us the power to endure when we trust in him. I have my sad days , but strangely I am not really fearful, what will be will be. I am so blessed with my loving husband and 5 gorgeous chilkdren, what more could I ever need.
 
aly,it was found i had hypotonia in my left lower leg after 8yrs with pls.
it has not progressed very much and would not be enough for a als diagnosed.
i know of a few with lmn involvement but diagnosed pls,one lady has hand atrophy.

really if you get down to the nitty gritty they say pure pls has no lmn signs,even a little would be classed as umn dominant als.
but really who can say,neuros can not decide among themselves or know for sure.

progression is the only thing to worry about.
 
Well, any thoughts I've had of abruptly ceasing the baclofen have been put to a halt! I'm up to 60mgs a day and I'm thinking of scaling back to 45. The dosage of 60 really kicks my butt every now-and-again.
 
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