Long-term Lamictal effects?

[julesmontrose]

Hi, just introduced myself in the Foyer if you want to see my background.

I've been on different forms of Lamotrigine (Lamictal and generics) since 2004. My Rx has been 400 mg since 2006. I switched to Lamictal XR on Friday.

For the past year, I've been having some very weird symptoms. At first I was writing them off, mostly thinking that I was stressed out but they've become noticeable enough that friends are starting to express concerns.

Here's my most frequent symptoms (there are others): One thing is that I have a lot of weird bruising. A bruise on my arm takes at least 2 weeks to heal. My vitals are really out-of-whack: my blood pressure on Friday was 150/90 (very high) and my resting heart rate when I measured it yesterday was over 100 BPM. I can tell it's beating fast without even taking my pulse, since it's usually beating out of my chest and it feels arhythmic, sometimes it's even too fast for me to sleep. I have really bad vertigo and balance problems. The last time I went to an NBA game, an usher had to move my bf and I to special seats because I couldn't make it up to the nosebleed section. I had a hard time walking heal to toe in my neuro's office, too (she commented). I've started having auras again which isn't that weird, I guess, but some of them are completely different than the ones I used to have. I've also had a couple of SPS where the top half of my body would leap up when I was lying on my stomach which is so drastically different than any sz I'd ever had that I barely even recognized it as one.

I was also having really bad anxiety and rage (which I took out on my poor bf) but that seems to have improved since I switched to XR.

I'm in my early 30s, not overweight, am a non-smoker, am vegetarian (on a good, well-organized diet - I'm not lacking vitamins) and walk everywhere. There isn't any other reasons I can think of that this should be happening.

I talked to my neuro and, after doing nothing more than looking it up on her computer, she told me that these can't be caused by the medication. I took a levels check on Friday and I came out within the theraputic range (I had skipped a dose but that may or may not have affected it). Her solution: increase my dose!!

Could these be long-term effects of the medication? I'm kind of at a loss for any other explanation.

 

[Nakamova]

I've been on Lamictal/Lamotrigine for 4 years, without any of the side effects you describe, with the possible exception of the increased blood pressure. But Lamictal does give me low red blood cell counts, for which I take a B12 supplement. If Lamictal (or some other cause) has led to a B12 deficiency, that could explain a number of your symptoms. A B12 deficiency can cause:
--weakness, tiredness or light-headedness
--rapid heartbeat and breathing
--pale skin
--sore tongue
--easy bruising or bleeding, including bleeding gums
--stomach upset and weight loss
--diarrhea or constipation

If untreated, over time it can cause:
--tingling or numbness in fingers and toes
--difficulty walking
--mood changes or depression
--memory loss, disorientation, and dementia

Since you are a vegetarian, that also puts you at risk for a B12 deficiency. It might make sense to get checked out by your regular doctor to rule out this or other causes, and discuss adding a B12 supplement, or increasing your dose if you take one already.

Best,
Nakamova

 

[julesmontrose]

Hi Nakamova,

Interesting! When I started Lamictal, I was actually vegan so I was eating a ton of stuff fortified with B12 (I basically stuck nutritional yeast on everything and a ton of products marketed to vegans is fortified). I definitely increase that (it's an important vitamin anyway). Thanks!

 

[julesmontrose]

*I will definitely increase that, I mean.

 

[julesmontrose]

Looking it up, I'm seeing a lot about decreases in *white* blood cell counts, too. I'm really concerned about that since I'm interning at a hospital in September and WBC decrease is associated with lower immunity.

 

[Nakamova]

Yes, I also have the low WBC, in addition to the low RBC. But I haven't noticed an increase in infections of any sort. (It may help that I work at home, and don't have any children).

 

[julesmontrose]

Thanks again, Nakamova! I have access to Medline since I'm a student so I am going to look this up specifically. I had nowhere to even start before. Also planning to call the hotline on the Lamictal XR brochure. I will take everything they as with a grain of sodium (pun completely intended) but will report back if anyone is interested.

 

[Nakamova]

Yes, keep us posted.

 

[julesmontrose]

I called GSK and talked to an awesome nurse. He basically told me that these weren't super common side effects but they have shown up in studies. He submitted a full report to the company and they're going to follow up with me by mail. He's also sending me the full dosing information (basically, a big packet with all the research data from past studies). Definitely made me feel a little better about having a $900 a month Rx.

 

[Nakamova]

Excellent! I hope the information is helpful in deciding whether you want to make a switch. I'm particularly interested in long-term effects of Lamictal on vision -- if there's anything of interest about that let me know.

 

[julesmontrose]

I can definitely post something after I get the full dosing information - I'm guessing that there's going to be some interesting stuff in there. Unfortunately, I think research on long-term effects is probably going to be pretty limited. I really don't want to switch if I can help it; Lamictal has been pretty good overall (better than Dilantin, at least).

I took your advice on the B-12 thing as well, just in case. It's super easy to do and B-12 tends to make me less foggy and tired. I'm hoping for a best case scenario where increasing my B-12 intake solves everything. We'll see.

 

[Nakamova]

Thanks, keep us posted.

 

[frshbeat]

I'm a vegan and have been so for almost 20 years. I've been a vegetarian for almost 23 years. I was on Depakote for Tonic Clonic for over thirty years. Before that I was on Dilantin and it did not control my seizures.

Depakote was the first drug to come along and control my seizures, however I had to finally switch off of it last year for a safer AED due to the side effects. It was over twenty years ago that I realized it was up to me to take care of my body. I knew that I had to make some lifestyle changes that could help minimize the effects that these drugs could potentially have. Becoming a vegetarian was one of the first decisions along that path.

But then just a few years later, the changeover to vegan from vegetarian is where I noticed optimum improvement. I like to run and ride bikes, and that gain I felt in my running was very noticeable. I just had to make sure I didn't fall into the trap of eating the endless bounty of faux meats and lots of saturated fats. Over the years, it's been essentially a transition into more raw foods and some cooked. I no longer use processed oils to prepare meals. Occasionally I use nut butters for those rare special meals. When I go out to eat, I sometimes indulge and allow myself to eat with a little oil, but still as healthy and organic as possible. I mention this as I believe it's another decision that's made a difference in the "whole".

At first, going vegan really raised concerns about nutritional deficiencies since there was no more animal products in my diet. I mean, what about protein and B-12? Well, I began to read more and then attend lectures by some well known doctors who were authors on the subject and living the lifestyle. Some of those included Dr. Neal D. Barnard, Dr. Michael Klaper, Dr. John McDougall and Dr. T. Colin Cambell.

So, am I concerned about B-12? Yes there's a concern, but no worries. It is in so many foods that are fortified with it. You can also take a B-complex supplement. But I always get my best dose from KAL Nutritional Yeast Flakes. Probably just like you do. It's a food source so its bio-availability is optimum. And, it also has other B vitamins along with B-6, as you probably already are aware of.

I sprinkle about a tablespoon on my food each day. Also, I stir in a 2 heaping tablespoons into a glass of water and drink it about every other day. Sometimes I'll add it to a smoothie. It's an easy way to cover your B-12 intake. I'll also take an occasional B-Complex supplement from Pure Encapsulations. They are in a vegan form. I like to change it up a bit, move around where my sources of B-12 come from.

I've never had any of the symptoms that are usually mentioned in regards to B-12 deficiency. No indications of any neuropathy, numbness, anemia or anything else that would indicate somethings going south. After 20 something years, not bad. And this is all while on AED meds. And, I still continue to stay active. I ran 3-1/2 miles today in 83 degree heat. Not much but it was fun.

Since I've transitioned into a new med, Zonisimide, the concern for getting proper nutrition has been elevated. I've added more food supplements to my diet. I believe in getting my vitamin supplementation from foods whenever possible. Whatever dark leafy green I can get into my Vita Mix along with some decent Superfoods...I'm content.

Being that I'm not so thrilled about the new drug I'm on, my neurologist has suggested that I can try either Lamictal or Keppra as my next choice. All these changes are concerning, but when the change does come, I want my body and mind to be in the best condition to be able to adapt.

I hope this sheds a little light on this subject. Still, you just might want to have your levels checked to see where you stand. I know quite a few vegans, and have never seen or, heard of one of them getting the symptoms you describe. All our bodies respond differently to these drugs. I personally think there may be something going on with the Lamictal.

Hope you are able to resolve this problem. Wouldn't it be nice if they had a potent vitamin food that had AED qualities? You could just sprinkle it on your salad to fix things. : )

 

[Nakamova]

I agree that Lamictal as well as other AEDs can play a role in causing a B12 deficiency. Certainly since starting on meds (Dilantin was the first) 12 years ago, my RBC and WNC levels have been sub-normal. They were fine prior to going on meds.

I had cognitive and eating-related problems with Zonisamide, and ended up switching to Lamictal. I hope it works out for you.

 

[Endless]

400 is a pretty big dose already. Did she say what she wants to increase the lamictal to?

Your doctor hasn't read the package insert for Lamictal. Or if she did it didn't sink in.

Here's the package insert for lamictal xr.
http://dailymed.nlm.nih.gov/dailymed/lookup.cfm?setid=3e2c9a35-6a39-41d7-ad84-3c0bb8894b09

Hypertension, palpitations, irritability and dizziness are some of the adverse reactions that are mentioned. There are more.

Everyone reacts differently to different drugs. You can develop a side effect after you've been on a drug for years.

When I have an adverse reaction to a drug, I go off the drug and see if the problem disappears and if it does, I start taking the drug again and see if the problems reappear. It's about the only way I can be reasonably sure it is the drug that's causing the problem and that it's not a coincidence.

 

[devinsmommy]

I have been on lamictal for about 3 months now. Since I started taking it my blood pressure has been extremely high, like 250/125. I didn't realise that this was a side effect. Will be calling my doctor first thing in the morning.

 

[Nakamova]

My blood pressure increased when I went on Lamictal, but my neurologist insisted that it wasn't a side effect...

 

[frshbeat]

My blood pressure increased when I went on Lamictal, but my neurologist insisted that it wasn't a side effect...

I noticed my blood pressure and heart rate increasing after getting onto Zonisimide last year. Had a similar response from my neurologist as you did Nakamova. Sort of the "pass the buck" routine. Last visit, a couple months ago, I commented once again that sometimes my heart feels a bit strange, something that it had never done until I got onto the Zonisimide.

Hearing about a symptom related to the usage of a medication should be cause for a neurologist to start asking a few more questions. When I mentioned it to mine, he remarked jokingly, "I do brains, not hearts". He never made any further mention of it as if the case is closed. Like there wasn't any causal relationship.

The inference was, "You have any other problems, especially these things that seem like side effects - - well just take them elsewhere". After that pretty awkward visit, it didn't take too much thought to realize how this doctor rolls. Now, currently seeking new neurologist.

 

[Nakamova]

My neurologist also insisted that some of my side effects must be due to diabetes. Except that: 1. I don't have diabetes, and 2. The side effects all started when I went on Lamictal. I do have another neurologist now, but I have a minimal relationship with him -- he just writes my prescription. When I told him that I hope to go off the Lamictal eventually, he looked at me as if I were crazy.

 

[frshbeat]

I have a great degree of respect for this field, but so many people report these disinterested responses from their neurologists. It's as if they took the class called "Patient Disingenuous 101".