Abdominal/Stomach Issues on Lamotrigine?

[Shelley3297]

After my first grand mal seizure in November, i started on Keppra, 1000mg/day. I had a few more seizures after a month on this med, and Doc gave me the choice of upping Keppra, or adding Lamotrigine. I chose to add the Lamotrigine, as my research found that sometimes dual meds have a better result than just one, and I didnt want to increase the side affects of the Keppra. Doc is titrating the Lamotrigine up slowly. I started at 25mg/day for a week, then just last Sunday, went up to 50mg/day. 2 days in on this dose, and I have terrible bloating, gas, and stomach upset/nausea. Has anyone else dealt with this on Lamotrigine?

 

[Nakamova]

I haven't experienced any stomach issues with lamotrigine. But everyone is different. If the stomach discomfort persists, ask your doc about any dietary changes you could try, or whether an anti-gas medication would be helpful. (It's no fun to add meds just to deal with the side effects of other meds, but if the lamotrigine helps with seizure control, it might be worth it).

 

[Shelley3297]

Yeah, I will probably ask Doc. My seizures are catamenial, so its a waiting game now, plus i really need to wait until i get to the full dosage probably, to see if the LTG does indeed help....seems like this disease is a whole lot of hurry up and wait. Wait to see if the side affects go away or lesson, wait to see if the seizures decrease, or cease, wait to see if the seizures change, wait to see.......I hate being broken sometimes. I know i am not broken, but it sure feels that way some days

 

[Porkette]

Hi Shelley,
Lamotrigine can cause stomach problems for some people along with vomitting. My biggest problem
is when I broke out with the rash from the drug after being on it for only 4 days.

As I've mentioned to you in the past tell your Dr. to do a DNA test on you and that will show what seizure
med will help you the most or if you are drug resistant. I tried at least 10-13 different meds and the only
thing that has really helped is mysoline, and Diamox which are 2 very old drugs.

Wishing you only the Best and May God Bless You,

Sue

 

[Nakamova]

Yeah, I will probably ask Doc. My seizures are catamenial, so its a waiting game now, plus i really need to wait until i get to the full dosage probably, to see if the LTG does indeed help....seems like this disease is a whole lot of hurry up and wait. Wait to see if the side affects go away or lesson, wait to see if the seizures decrease, or cease, wait to see if the seizures change, wait to see.......I hate being broken sometimes. I know i am not broken, but it sure feels that way some days

Hang in there -- when I started on Lamotrigine it took at least a month for the side effects to go away. I think every time there's a change in dose it can take awhile for the brain and body to adjust. Fingers-crossed that's the case for you.

 

[XxBlaqkxX]

It's not uncommon for those with seizures to be on more than one medication to keep them under control.

At this point in time, it's finding what works for you and unfortunately, that can take quite some time.

I took Lamotrigine for 4 years. Before that, I took only Dilantin and then Dilantin with Lamictal, and then they were assuming Dilantin wasn't working at all so they kept me on only the Lamotrigine.

I can say I had a lot of issues in that time. I ended up with a lot of depression while on Lamotrigine (I think this was probably more intensified as I was going to a high school that was basically indoors all day long so I was more than likely Vitamin D deficient, which wouldn't have helped).

I felt like I had poor appetite while on this medication and I'm not sure if that was the Lamotrigine or depression or both. After two years of severe depression, I ended up with a ruptured ovarian cyst. It was absolutely agonizing. I didn't feel hungry at all due to that and was basically wasting away and fell to less than 100 pounds. It was disgusting.

I also had a ton of issues with bloating - it seemed dairy made everything worse. I don't have much of a dairy problem these days or even before the Lamotrigine as I did while I was on it. My stomach was upset a lot of the time.

I also had double vision while I was on it and that was scary at school when there were bouts of that and I had to walk up stairs. Thankfully upon lowering the dose, that issue went away promptly.

I also had too many breakthrough seizures. I had at least 10+ breakthroughs while on Lamotrigine alone.

It wasn't until after I graduated high school that they told me to come off the Lamotrigine (that was awful...the withdrawals were terrible - it was just harder because it was such a chalky tablet to come off of it even more slowly). I was then switched to Keppra when I was completely off of it. Keppra worked for me and has been the one that has worked so that's what I've been on to gain control over seizures.

 

[Sabbo]

Hi. Both of those meds (which my doctor tried as add-ons) were not suitable for me. Keppra gave me such horrible cramps that I was doubled over from the pain. Lamotrigine is related to Tegretol, so within a short time of starting it, I felt a rash like the one Tegretol caused beginning on my back.

 

[Shelley3297]

Porkette, yes i am going to ask my Doc about the DNA testing at my next appointment once i get it scheduled. I thought i had a followup already scheduled, but I am not seeing it on my online portal, so i guess i have to call and make sure. I just feel like i have inundated him with questions, and I hate to be a burden......I have to get over my lack of being able to advocate for myself!
XxblaqkxX, i am also now uncertain if I was exposed to covid (unfortunately i work with a bunch of moron antivaxxers who have been sick lately but refused to get tested), so some of the stuff i have been dealing with this week could be symptoms of that. I am getting tested probably tomorrow, even if i have to buy an at home test. I am also lactose intolerant and gluten intolerant (for several years), so i do watch what i am able to eat pretty close, so I know none of it is coming from food that i am eating. For some reason, the loss of appetite doesn't seem to start until later in the day, so i am trying to get breakfast and a little lunch in. By the time i get home, just about any food or the thought of it makes me uncomfortable, but i am doing ok for now. I have the mantra from finding Nemo stuck in my head, "just keep swimming, just keep swimming", so that is what i am going to do, and try to stay positive! Thanks all

 

[XxBlaqkxX]

Porkette, yes i am going to ask my Doc about the DNA testing at my next appointment once i get it scheduled. I thought i had a followup already scheduled, but I am not seeing it on my online portal, so i guess i have to call and make sure. I just feel like i have inundated him with questions, and I hate to be a burden......I have to get over my lack of being able to advocate for myself!
XxblaqkxX, i am also now uncertain if I was exposed to covid (unfortunately i work with a bunch of moron antivaxxers who have been sick lately but refused to get tested), so some of the stuff i have been dealing with this week could be symptoms of that. I am getting tested probably tomorrow, even if i have to buy an at home test. I am also lactose intolerant and gluten intolerant (for several years), so i do watch what i am able to eat pretty close, so I know none of it is coming from food that i am eating. For some reason, the loss of appetite doesn't seem to start until later in the day, so i am trying to get breakfast and a little lunch in. By the time i get home, just about any food or the thought of it makes me uncomfortable, but i am doing ok for now. I have the mantra from finding Nemo stuck in my head, "just keep swimming, just keep swimming", so that is what i am going to do, and try to stay positive! Thanks all

COVID stinks, but the survival rate seems better than the flu, honestly. If you think you're getting COVID, though - definitely take it easy. For me, I thought I was getting a cold and I had lost my sense of smell, which I thought was simply stuffed sinuses. I felt like trash and a day or so later I ended up with a seizure in the evening and then multiple seizures the next morning - they weren't stopping. The doctor said he's seen seizures in people with COVID that didn't have a previous history so he wasn't surprised given my past medical history.

I wasn't able to keep hydrated because of all the seizures I was having. I had so many IV fluids it was insane. I should've died that day, but I'm glad I'm here. Although, it's been about a year since then...having a little bit of trauma recall this year that I'm trying hard to get by and distract myself from.

Definitely stay hydrated, and a lot of things that were useful were large doses of Vitamin C, some zinc, herbal teas with honey, but I felt like all I wanted to do is sleep for a while. I wish we had IV docs here, my sibling who is in the city paid about $250 for one of the IV medics to come administer IV vitamin C and she said she felt loads better after that. I also know some people who have had monoclonal antibodies and have recovered quickly after that.

I don't have troubles with dairy like I used to, but too much commercial dairy products isn't the best for me. I have no issues at all with raw milk or raw dairy products.

I know for sure I have issues with wheat and gluten. I need to cut that all out of my diet together. I feel so much better when I avoid it completely. It has a habit of slipping in there over the holidays >_<

I hope that you don't have COVID and will be feeling much better in days to come.

 

[bdhshakes]

I've been on Lamotrigine for years, along with a few others - I've got quite the daily cocktial. I stayed with it because I've always handled it very well. During increase cycles I never experienced stomach pain myself. With any seizure medication I always get the exact same side effects: double vision, nausea, vomitting, dizziness. These would usually stop after a few weeks as my body got used to the new dosage levels. So, it could just be that's how your body is handling the medicaiton. I know a friend is also on Lamotrigine and his side effects were completely different. I think everyone's body just reacts differently to these medications.

As someone who's tried almost every drug there is for epilepsy you just have to keep trying to find what works best for you, and more often than not I think most people find the right one for them.

Good luck, and make sure to update your doctor with how you're feeling if there is annny question in your mind it could be related to your medication. I've had some really dangerous side effects to certain medications so, keep them in the loop!

 

[Phtzzz]

After my first grand mal seizure in November, i started on Keppra, 1000mg/day. I had a few more seizures after a month on this med, and Doc gave me the choice of upping Keppra, or adding Lamotrigine. I chose to add the Lamotrigine, as my research found that sometimes dual meds have a better result than just one, and I didnt want to increase the side affects of the Keppra. Doc is titrating the Lamotrigine up slowly. I started at 25mg/day for a week, then just last Sunday, went up to 50mg/day. 2 days in on this dose, and I have terrible bloating, gas, and stomach upset/nausea. Has anyone else dealt with this on Lamotrigine?

Very much so. The generic med. caused severe stomach upsets for me to the point where I actually starting throwing up shortly after taking one. Doctor changed the script to the brand name and that really helped me. I still do not like them, but at least I can keep them down, Good luck.

 

[Shelley3297]

All, since the onset of the stomach issues, i also had terrible skin reactions to the Lamotrigine, and subsequently had to go off of it. But the skin issues are taking a long time to leave. I have been off for 3 weeks now, and still have some of the pimple-like stuff popping up on my face and back. Hopefully it will go away in the next few weeks.

 

[Nakamova]

Sorry to hear that the Lamotrigine didn't work out. Skin stuff should resolve in a few weeks.

 

[Porkette]

Hi Shelley,

Just like you I had problems with my skin and broke out with a rash while on Lamictal. I was on it only 4 days and then my skin
began to itch and I had tiny red spots on my skin that looked like pimples but they were smaller. I saw a skin specialist who did a
biopsy on me and he found out I was allergic to the lamictal. He then gave me a steroid cream to put on my skin and another cream
to stop the itching it took about 3 wks. for the rash to clear up. I also tried taking tegretol and trileptal and they did the same thing
to me because they are very much like the lamictal so you may want to speak to your Dr. if they want to put you on either of these drugs.

In regards to stomach issues I had that problem and had to see a gastro Dr. because I was having so much stomach pain and running
to the restroom. My Dr. found out the drug I took mysoline (primidone) was eating up my intestine. He told me to go on a low fat diet
and stay away from acidy foods. I was also told to eat activa yogurt for a few days and that helped me a lot.

I wish you the best of luck and May God Bless You,
Sue

 

[Shelley3297]

Porkette, i had GI issues before any of this, and had a terrible gerd flareup that lasted months after covid in sept 2020, and gave me terrible esophagitis and gastritis. Was just getting over that, and this stuff started. Anyways, i am lactose intolerant so no milk products of any kind (no yogurt), and gluten intolerant, so i stay away from acidy foods already. I have terrible loss of appetite since being diagnosed (could be meds, could be anxiety, could be all of the above), so i barely eat anything as it is, although i have found that sugar agitates everything, so i have been sticking to alot of veggies and good whole foods when i can. My appointment with my 2nd opinion doc (will probably become my new all-the-time neurologist) is coming up, and I will be asking about most of this stuff to get his ideas on everything. Thanks all