Fresh from the ER . Everyone should read

Just wanted to share how serious medication can effect us . I was recently doing a step down from nortriptyline . With in a few days of lower my dose by 50 mg I begun not feeling well . Started out agaited and angry and felt like I was burning uupfriday night . The next day I had a racing heart beat and could hear it in my ears . Sunday night I felt like I was dieing . slept through monday and most of Tuesday . anyway I contacted my neurologist office that told me they would trying and contacted my doc . I felt a little better yesterday and then this morning I was extremely tired and then I was hit with dizziness nausea again the top of my head felt like it would blow off . Again I tried to raise my doc and was adviced to contact my primary or go to Er . I spoke with my primaries nurse . She advice go to er it could be my heart . By the time i got there I could barely walk my skin felt freezeing and burning and my stmach mucsles were cramped up and i had an awful pins and needle feeling all over my skin and the pain OMG .Long story short . It was the meds . The decrease caused my blood pressure to drop and I was in bad withdrawal . Er doc told my go back to my original dose and follow up with my primary. So do not hesitate if you start having strange symptoms contact your doctor right away. The medications come with facts sheets read them .These medications can really mess you up . when starting them and stopping them … Hopefully my symptoms will subside in a couple of days .Until then bed rest . It is an Esperance I wish to never go through again . I hope none of you go through this and if you do this gives you enough awareness to go to the doctor right away…

Sorry you have to go through this, you give good advice by experience, we should all be aware of this. Thanks and good luck my prayers are with you!

Scott

Thanks Scott :slight_smile:

I have had similar problems while cutting down on meds too quickly. I started having panic attacks but realised what was causing it and went back up to full dose. I have bad side effects from taking meds so maybe people who get this get the same problems coming off of meds

All I can say is good bye mental clarity which soon will be a distant memory and hello stuper fog and forgetfulness

I ran into the same thing when a new neurologist cut my gabapentin dose in half overnight at the same time he started me on topomax. Immediately I could not sleep but was exhausted (to a point of it being painful) and the pins & needles and electric feeling was awful. Worse than any tn pain I had. By the 4th or 5th night I couldn't imagine living like this...it was such a hopeless feeling. Several nights I felt like I needed to go to the ER but I kept riding it out (mostly because I live alone and couldn't bring myself to get dressed and drive to the ER).



shadow2 said:

I ran into the same thing when a new neurologist cut my gabapentin dose in half overnight at the same time he started me on topomax. Immediately I could not sleep but was exhausted (to a point of it being painful) and the pins & needles and electric feeling was awful. Worse than any tn pain I had. By the 4th or 5th night I couldn't imagine living like this...it was such a hopeless feeling. Several nights I felt like I needed to go to the ER but I kept riding it out (mostly because I live alone and couldn't bring myself to get dressed and drive to the ER).

. Thank you for responding shadow . You made me feel some what better . I am still dizzy and weak and the prickles are not as bad . Please tell me .what happened . how long where you like that . I am honestly a little scared

What really ticked me off is that I contacted my neuro's office about it and the assistant called me back that evening to tell me that they told me there might be some tingling as a side effect. It was a SEVERE side effect. Actually, for me there was also such a level of dehydration, I increased my water intake by 3x and still had severe, uncomfortable cottonmouth. That side effect lasted at least a month after I went back to my original dose. During the decrease+new med. I was agitated and miserable...I was hurt at work a year ago and jerked around by my employer and worker's comp and my pain there was amplified beyond what I could take. My back felt like it was burning and I had pain up and down my spine/back.

Most of this subsided within a week or two of resuming my original dose. What I learned from this was not to trust the dr., lol. My previous neuro would have me go up in 100 mg increments and I never had a problem. I remember thinking it was a bad idea to drop so fast and I wish I had spoken up.


I hear you and thank you . :slight_smile: I still like heck


shadow2 said:

What really ticked me off is that I contacted my neuro’s office about it and the assistant called me back that evening to tell me that they told me there might be some tingling as a side effect. It was a SEVERE side effect. Actually, for me there was also such a level of dehydration, I increased my water intake by 3x and still had severe, uncomfortable cottonmouth. That side effect lasted at least a month after I went back to my original dose. During the decrease+new med. I was agitated and miserable…I was hurt at work a year ago and jerked around by my employer and worker’s comp and my pain there was amplified beyond what I could take. My back felt like it was burning and I had pain up and down my spine/back.

Most of this subsided within a week or two of resuming my original dose. What I learned from this was not to trust the dr., lol. My previous neuro would have me go up in 100 mg increments and I never had a problem. I remember thinking it was a bad idea to drop so fast and I wish I had spoken up.

When this was happening I started a thread about it...changing from gabapentin to topiramate.

Yep . I bet .

Staying on Gabapentin. My thread was "changing from gab to topiramate".

After that debacle, I am leery to change meds, although after that experiment I have had to double my gab and still not under control. :(

Kim said:

Yep . I bet .


And it seems like doctors don’t understand why you are leery about changing meds .It is hard enough to adjust to a new med as it is . And then you get looked at like a head case . Its almost like they forget there is side effects with these medications . The side effects of the meds sometimes are brutal but tn is also brutal . I took along while to except the fact your life is not going to go back to the way it was before and making people understand their is no manic pill that will do that . It is a shame really


shadow2 said:

Staying on Gabapentin. My thread was “changing from gab to topiramate”.

After that debacle, I am leery to change meds, although after that experiment I have had to double my gab and still not under control. :frowning:

Kim said:

Yep . I bet .

Yes, when the P.A. said that there would be some tingling like it was no big deal. I was crawling out of my skin. In a matter of days it took me to the depths of hell...worse than anything else I have experienced. Gabapentin has slowed my brain, caused a good deal of weight gain but I get the medication. To this day, I don't know if it was the withdrawal or the Topomax that caused my hell but I do know I will taper soooo very slowly when I come off it.

Kim, I thought of you last night when I picked up my meds. I sat in my car and read all three of the pamphlets that came with them to check for side effects/warnings, lol.

Thanks lol ! Its kind of a double edge sword reading those things . Sometimes the possible side effects scare the heck out of you . especially those of us whom a sensitive to there kinds of medications . I am sure there are more people out there who have these same kinds of problems but are not lucky enough to know about LWTN or whatever their struggle . All of this puts a great strain on us as the patient , our families and our care givers . Because many of us are faced with this kinds of problems and don’t know how to deal with them or what to do or sometime the old stick my head in the sand until it goes always . My best wishes to you shadow and to all the others that struggle everyday . It was said once it takes a village to raise a child . I believe we would be far better off if each of as remember our family in humanity and treated one another more kindly and with respect no matter our difference’s



shadow2 said:

Yes, when the P.A. said that there would be some tingling like it was no big deal. I was crawling out of my skin. In a matter of days it took me to the depths of hell…worse than anything else I have experienced. Gabapentin has slowed my brain, caused a good deal of weight gain but I get the medication. To this day, I don’t know if it was the withdrawal or the Topomax that caused my hell but I do know I will taper soooo very slowly when I come off it.

Kim, I thought of you last night when I picked up my meds. I sat in my car and read all three of the pamphlets that came with them to check for side effects/warnings, lol.

Thanks for sharing your experience with us. I am also super sensitive to increases and decreases and always manage my own meds. The jumps recommended by the neuro is to great so I have decided to override his instructions. I still decrease or increase but at a smaller and slower rate. We know our bodies best. I hope you feel better soon.

Thanks for sharing your experience with us. I am also super sensitive to increases and decreases and always manage my own meds. The jumps recommended by the neuro is to great so I have decided to override his instructions. I still decrease or increase but at a smaller and slower rate. We know our bodies best. I hope you feel better soon.

Thanks for sharing your experience with us. I am also super sensitive to increases and decreases and always manage my own meds. The jumps recommended by the neuro is to great so I have decided to override his instructions. I still decrease or increase but at a smaller and slower rate. We know our bodies best. I hope you feel better soon.

Thank you Patty . I am slowly regaining my strength but my blood pressure is still having a hard time . Yes . no more drastic for me . Just slow and easy or no dice . I never ever want to feel this away again . I went to the quick care today to have the rash I was breaking out in last night treated . Steroid injection and cream . Roughy week . Tough day . Blah lol .



Patty said:

Thanks for sharing your experience with us. I am also super sensitive to increases and decreases and always manage my own meds. The jumps recommended by the neuro is to great so I have decided to override his instructions. I still decrease or increase but at a smaller and slower rate. We know our bodies best. I hope you feel better soon.