Am I Overreacting? Tight/Sore Jaw

[LilMissTNT]

Hi all,

I am driving myself batty with over-thinking, over-worrying, wondering, "Is this normal/med related/whatever???" over every little sensation I feel these days.

I had an episode yesterday with a series of fainting/mini-seizures. The ER docs said my Dilantin levels were low, and I'd been havign problems w/it anyway, so I told my neurologist to take me off it & just keep me on Lamictal.

I've noticed this evening that my jaw is stiff and my lymph nodes are tender (I can't tell if they're swollen or not). It's been almost 48 hours since my last Dilantin but only 5 hours since taking my 1st Lamictal of the day (I'll be ramping up on it quicker than planned since I axed the Dilantin).

Is this normal, related, anything? Or am I overreacting? I feel like my entire body is just turning against me

 

[Endless]

LilMiss,

Enlarged lymph nodes? You may want to call your neurologist and ask.

Whever Lamictal is involved, you need to watch for adverse reactions. One of the rarer ones is Steven's Johnson Syndrome. It doesn't sound like you have it, but you should be aware. Enlarged lymph nodes is one of the symptoms, but unless you have a whole bunch of the other symptoms I wouldn't be worried about it.

SJS is a whole body allergic reaction which eventually becomes a very dangerous rash, treated in the burn unit in hospitals. In general the early symptoms are "flu like," with fever, achy muscles, inflamed lymph nodes, sore throat, coughing, vomiting and/or diarrhea, etc. Eventually it turns into a really bad rash. If you have the flu like symptoms call your doc immediately. If you have a rash especially call your doc immediately. After the blisters start it is quite serious.

On the internet don't even look at the pictures. They'll scare you about troubles you don't have. I had a rash with Lamictal, but it wasn't THE rash (SJS). It was just a simple drug reaction rash that went away after a few weeks when it was treated with steroids (no big deal). But you better bet my epi and my dermatologist worked together and watched me like a hawk until it went away, because drug reaction rashes can turn into SJS.

Here's links with symtoms and more about SJS:
http://www.sjsupport.org/fact.shtml
This one is an attorney's site, but it has good info: http://www.sjs-legal.com/

Now don't get scared. This time of year it almost certainly is the flu. They don't call it "flu season" for nothing. And just enlarged lymph nodes by itself isn't really "flu like." You are okay! Now just highly educated about SJS, like all people who take Lamictal should be.

 

[LilMissTNT]

Thanks once again Endless

I have developed a slight rash recently. I thought it was heat rash at first (I was in Phoenix last weekend, 100 degrees!) but it didn't go away after a couple of days. They checked me at the ER last night & with my neurologist this AM and it's not the deadly nasty Lamictal rash of doom. I had checked so many pictures & medical sites online when the rash first appeared!!!! Seriously, I get a hair out of place these days & I'm Googling it.

I feel fine other than a slightly tender neck/jaw area. No fever, no fatigue, not flu symptoms. But it seems all the stuff I've had has snuck up so fast, who knows.

Meh!!!

 

[Endless]

Well, Sheeesh! If you had a rash with it you were definitely NOT overreacting.

SJS is scary, and only a doctor can tell us if it is a harmless rash or THE rash. Actually, I like what you called it. "deadly nasty Lamictal rash of doom" I found out that if you say the words "Lamictal" and "Rash" in the same sentance, every doctor's door magically opens and you get an immediate appointment. Not later that day, more like right that minute.

When I had the rash I scoured the internet, too. I wanted to see what it looked like if my rash morphed, as my doctor told me it could possibly do. I scared myself silly.

If it were me I'd still see my primary care provider about the swollen lymph nodes. Hard to tell what it could be, but you might have an infection somewhere in your body.

 

[LilMissTNT]

Yeah, my rash just didn't match the descriptions or the pictures (thank goodness).

The ER doc couldn't find anything wrong w/my blood tests other than low levels of Dilantin, so he also checked white blood cells counts, hemoglobin, etc in case there was a viral infection & those all came back OK too. So as of last night, no infection. It's just a bit annoying right now, not very bothersome, but if it continues in the AM I will go back to the doctors (again-- meh.)

 

[Nakamova]

The tight sore jaw may be from clenching it at night. That happened to me when I first went on lamictal.

 

[LilMissTNT]

That would make sense Nakamova, except it started happening in the evening. I've definitely had a tendency to clench my jaw before (usually when stressed out)m but this one just kidna came on, along with the tender/swollen lymph nodes.

Luckily the jaw stiffness has mostly subsided, lymphs are still a bit tender but not nearly as bad as last night. Hopefully they will behave themselves before I have to go back to the doc (again).

 

[RobinN]

Deficiency of magnesium can cause tightening of muscles.

 

[LilMissTNT]

Thanks Robin, I'll look into that. I haven't changed my diet at all, and I take a multi-vitamin every day (only 13% magnesium, but the same one I've taken for years) so I dunno why it would suddenly become an issue?

Jaw is still a bit tight, but my lymphs are feeling less tender. I do feel a bit of a sore throat coming on-- it's actually just sore on one side, in the tonsil area. Dunno if this is another fun side effect or if I'm getting a cold/flu. Meh!

 

[RobinN]

It is my opinion that multi vitamins are not very useful.
Rebecca and I both take about 400 - 800 mg of magnesium per day. I had chronic migraines for 30+ yrs and it was the magnesium that gave me relief. I have not had a migraine in 5 yrs.

It could become an issue now because the added medication could be winning in the absorption process. It is a delicate balance that I am not trained to explain. Over time, things like caffeine can deplete your system as well. It is being shown in research that our crops are being depleted of magnesium, so we can not get the levels we need from nutrition. We must add a supplement.

Have you examined your diet for known excitotoxins and neurotoxins. Label reading is extremely important. It might have not been an issue for you in the past, but our bodies are ever changing and what we could tolerate at one time, can gradually or blast us at other times.

You might consider keeping a journal or calendar journal like I do. It might help you connect the dots to some trigger to this side effect. Or as you think it might just be your medication. Taking magnesium allowed me to throw away all of my prescriptive meds for migraines.

Epsom Salt baths are also known to relax muscles. It is a type of magnesium and is absorbed through the skin. Please do not try this alone if you are still experiencing seizures. Baths should only be taken when others know you are doing so.

My info is not a medical diagnosis, I only share my personal story to offer other ideas that are rare in the conventional doctors office.

 

[LilMissTNT]

You may not be a licensed doc Robin, but you're full of great information.

My western medicine raised self is still a bit hesitant to scrap the meds entirely just yet, but I def need to do some research about diet & other supplements. My neurologist did tell me to continue the multis b/c I need to make sure my B12 & other B vitamin levels are maintained. So it wouldn't surprise me if the drugs are sucking up my magnesium as well, if they can do it with the Bs.

I am meeting with my neurologist on Thursday. I have a lot of faith in him, he really knows his stuff and is compassionate, I am sure he can give me some guidance. I'd love to start seeing a dietician as well, but dunno if time/money will allow for it.

"Have you examined your diet for known excitotoxins and neurotoxins." I read labels, but any advice on how I figure out what excitoxins & neurotoxins I should be looking for? I know the obvious bad stuff like MSG, hydrogenated anything, corn syrup... but surely there is more? BTW I also rarely drink caffeine; every now & then I crave a Dr. Pepper but that's about it!

 

[Endless]

LilMissTNT,

Be sure to have your vitamin D levels checked after you've been on the AEDs a few months. These drugs do suck that right out of the body, and it can hurt your teeth and bones, not to mention disfunction of the nervous system. It's just a blood test and can be done along with your other ones, no additional needle sticks. Most PCPs do this test when they hear you are on AEDs, but not all neuros think to test for it.

After months on various AEDs and taking 5000 IU of D every day, my D level was still only 11 (normal is 30-100). My Primary care Provider put me on 50,000 IU taken once a week.

 

[LilMissTNT]

Thanks Endless. I had blood tests done in the hospital last Friday, they said everything was normal but I dunno if they thought to test for vitamins.

Once I am rampled up on the Lamictal, my neurologist wants me to go in for regular bloods tests. I'm totally needle-phobic (which you'd think I'd be over after the last 3 weeks), so you can imagine I am just tickled pink over this *eye roll* But I will be sure to ask them to check vitamin levels while they're at it.

 

[RobinN]

We did not have specific vitamin testing until about four years after Rebecca's seizures started. It was never suggested until she was 18 and had an adult PCP. Not sure if being a minor mattered with insurance referrals.

You need to find a doctor that will request a test that will look at rarely tested vitamins and minerals.