• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Lamictal causing anyone to be extremely fatigued?

Ivana

Senior Member
Messages
112
Hi all

Just wondering if anyone is taking Lamictal, and if so, do you find that it makes the fatigue a lot worse?

I recently started a whole heap of new meds and couldn't figure out which one was bringing on the fatigue which got so bad that i was bedridden for days.. I finally stopped with the Lamictal and am feeling a bit better (still really tired and groggy though).. Has anyone else had a similar experience with Lamictal?

Best wishes,

Ivana
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
tania, thanks for the link to the Lamictal thread. I will study it as carefully as I am able to.

Saw a new neuro today. She only wants to deal with the migraines, can't help with the fatigue, etc. So typical, with the usual lecture on 'rebound headaches', the usual lecture on the dangers of imitrex and high BP (which is generally only high at the doctor's office), and of course she's big on prescribing antiseizure meds for migraine. Instead of warning me about the dangers of this drug, she just gave me a handout. Her attitude was, take this stuff and don't ask any questions. I sure am tired of being a guinie (sp?) pig.

Maybe the worst was that two weeks ago the primary care physician said I had some kind of autonomic disorder, but today the neuro said I didn't, because the tilt table test (done by cardiac people) was 'normal'. Perhaps I am just imagining the orthostatic symptoms.

Ivana, is the Lamictal for seizures? After I've been on the med for a little while, I'll post my reaction to it.

My HAs and fatigue is so bad, it may be hard to tell if the Lamictal is making it worse!
 

hixxy

Senior Member
Messages
1,229
Location
Australia
Hi all

Just wondering if anyone is taking Lamictal, and if so, do you find that it makes the fatigue a lot worse?

I recently started a whole heap of new meds and couldn't figure out which one was bringing on the fatigue which got so bad that i was bedridden for days.. I finally stopped with the Lamictal and am feeling a bit better (still really tired and groggy though).. Has anyone else had a similar experience with Lamictal?

Best wishes,

Ivana

I'm also guilty of often starting lots of things at the same time in a rush of enthusiasm to heal. This makes it really difficult as you're now finding out when something goes wrong and you have no idea whatsoever has caused it.

Better to try adding new treatments gradually.

hixxy
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Hi Tania, can you elaborate on your bad experiences with lamictal??
Many thanks!

My overseas boyfriend while seeing him, took me to this doctor who turned out he didnt know a thing about ME/CFS, he believed it was all in peoples heads but he didnt tell me that, (made out he was understanding and knew things while he just believed I had bipolar thou I'd been seeing ME/CFS specialists for years and it was the first time I'd been to him).

He convinced the new boyfriend at the time (well before this we'd been dating online.. so new to being physically together) that he could "fix me" which of cause my boyfriend wanted and he put me on a trial of Celexa and Lamotrigine (both in low doses), which my boyfriend at that time made me take. I had one of the meds in the morning and the other one at night when I went to bed.

Unfortunately both caused me big issues (I could tell I was reacting badly to both as I'd get one lot of side affects and then hit with the second lot of side effects).

I developed a rash across my chest which was spreading can happen with Lamotrigine and can be a life threatening issue from it http://www.blackdoginstitute.org.au/docs/Lamotrigineassociatedrash.pdf , so it had to be stopped as soon as that happened. Anyone who is about to take this drug should be aware of this rash to look out for (the doctor had warned me and told me to stop if i developed a rash)

There were other symptoms too but I now cant remember which group of symptoms related to which med (the rash developed on the second day or close to the third day, I stopped the med immediately due to this rash as doctor said (but I wasnt planning to continue anyway as other symptoms were soo bad too) , so no more med was taken once it started (it was quite a bad rash right over chest and spreading)

Any way.. what was happening is I lost my ability to even pour myself a cup of tea... one of the meds screwed up my coordination so badly... I couldnt poor water into a cup. All my ME/CFS started getting worst.

The other med..

turned me almost psychotic.. I like developed this state where I wanted to rip and see huge chunks of flesh coming from my boyfriends of that time back and would of attacked if I hadnt fought to keep myself in check.. I wanted to see him multilated. I literally was going crazy due to one of the meds. I seriously think had I stayed on it, I could of ended up murdering someone.

Then to top that off.. the med of those two I had to take at night which was supposed to also help me sleep.. made me hyper in a bad way (that may of been the one which made me want to seriously be hurting my partner??). When the other one I was taking in the morning.. left me feeling even more tired and exhausted then I was normally to the point where i went from hardly functional, to having no function at all.

I ended up dumping that boyfriend for it all, (thou he was sorry by then what he'd done, cause he saw what a severe reaction I got from those meds (it really freaked him out so bad he was frantically ringing the doctor due to it making me so bad.. no functional ability at all and he couldnt disbelieve it was in my head then, that I had issues with drugs due to seeing the rash which could of been very serious)..but I didnt forgive him.

he should of listened to me that i had issues with drugs (I had bad MCS at the time too) and not went along with that doctor trying to trick me and put me throu all that... and so I fled NZ (after I recovered enough to come home.. some strangers took me in in the meantime as I had no where to go.. The NZ people were great) and came back to Australia as soon as I was able to do so. I felt betrayed by both him and that doctor.

The new zealand doctor which did that to me.. not due to what he did to me, I never put in a complaint.. but a year later actually got his medical licence removed from doing some bad things to people and also for fraud. On hearing about that.. I was happy!! Idiot doctor. Good riddance!!

The well known NZ specialist was going to see me and was going to squeeze me in, I'd spoken to her before I left Australia.. but due to what happened with that boyfriend and that GP (who knew nothing of ME) ... I never ended up getting to her due to all the drama (of ending up on the street in a strange country while having bad ME/CFS ). It was all very traumatic, just came home as soon as I was able to.
 

garcia

Aristocrat Extraordinaire
Messages
976
Location
UK
Many thanks for posting Tania. Really sorry you had to go through all that!!!
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
tania, what an awful experience! I have read so many horror stories on this forum, it's hard to see where the medical industry has progressed much since the days of bloodletting.

I've been on the lamictal for a week, starting at 1/2 the prescribed dose. I'm having problems with more than usual drowsiness, and neck pain. The more I read about this drug, the more concerned I get. I'm unlikely to stay on it for long.

Yesterday I felt well enough to look into the question of whether it is likely to actually help with the migraines. The answer is NO. I found several medical trade journals that all agreed the research shows this particular antiseizure med doesn't prevent migraine. I found a lengthy article on the NIH website that reviewed pretty much every migraine preventative ever researched, and it agreed with the magazine articles.

So why do neuros prescribe meds that the research says don't work? Can't they read at least as well as I can??
 
Messages
2,562
Location
US
I recall taking that for a day or few days. Almost every drug makes me have horrible insomnia (my insomnia is bad enough when I take nothing) or lethargy (much worse than normal).
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
tania, what an awful experience! I have read so many horror stories on this forum, it's hard to see where the medical industry has progressed much since the days of bloodletting.

I've been on the lamictal for a week, starting at 1/2 the prescribed dose. I'm having problems with more than usual drowsiness, and neck pain. The more I read about this drug, the more concerned I get. I'm unlikely to stay on it for long.

Yesterday I felt well enough to look into the question of whether it is likely to actually help with the migraines. The answer is NO. I found several medical trade journals that all agreed the research shows this particular antiseizure med doesn't prevent migraine. I found a lengthy article on the NIH website that reviewed pretty much every migraine preventative ever researched, and it agreed with the magazine articles.

So why do neuros prescribe meds that the research says don't work? Can't they read at least as well as I can??

Dont let my experience of the drug put you off or influence how you are seeing it. Just go by your own experiences of it and what, it is doing for you.

And if you have been put onto a drug for a certain reason, do check into the science (as you've done) to see if it actually does treat the issue you've been given it for. I think that is very important for everyone to do as so many doctors just prescribe something without researching it to see if it truely fits the person or symptom who they are giving it for.

People can save themselves a lot of trouble if they check the research themselves and not blindly trust their doctor (who as another said.. are bribed etc by drug companies)

But this isnt a drug we see commonly recommended in treating ME/CFS symptoms.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
Saw the neuro again yesterday. The first thing she said was, "Why are you back so soon?". Fortunately my case manager was with me, and we both told the doc she had said, "Return in two weeks". The doc still insisted she said six weeks. Weird. Anyway I told her the drug was causing more drowsiness, and intense dreams that seemed to last for hours. Of course she said the dose I was on couldn't possibly be enough to cause adverse effects, but that I could stop the drug all at once, which I did, so that's the end of that.