Seizures+chest and joint pain

[Buffheart]

Hi all! So I still have a month to go until I can see the neurologist, but just a few minutes ago I was thinking about something my GP asked me back in May when he said he thought I might be having seizures. Actually he didn't say anything. Rather he asked me if I ever have chest pains. And I told him "yes" because I do. Ever since I was little I have had random bouts of chest pains maybe once or twice a year. Probably no more than twice max. Basically what happens is I get very sharp stabbing pains in my chest. They usually go from just above my belly button to the very bottom of my neck. It feels like somebody is stabbing me with a knife. Although I don't notice any shortness of breath it is very painful for me to breathe when this happens and so I try to either hold my breath or breathe very shallowly so that my chest doesn't move. I can talk and am perfectly coherent as well. After a few minutes it passes on it's own. As crazy as it sounds I have become so use to it that I always thought it was normal, that everybody experienced that. Just like my "seizure like events" I always assumed it happened to everybody and thus never brought it up, even to my parents. I can remember being in elementary school, in class, and just praying for the pain to pass. There have been times where I considered calling 911, but I'm afraid that by the time they get there it will have passed and then they will call me a liar. I have also considered telling my parents, but they never believe me anyway.

After I told my GP about the chest pain he wrote something down and that was that. No referral to a cardiologist, no medication, no EKG's. Nothing. So I don't know whether I should be worried or not. I mean if he wasn't worried then maybe it's nothing. But then again my doctors have also ignored me before. I am going to bring this up to the neurologist, but I wanted to get some opinions. This hasn't happened since January-March 2011 time frame, but I still think about it sometimes.

For a couple of months I also noticed times where my heart would beat very loudly for a couple of beats (maybe 3) and then go back to normal. Then it would beat loudly, then go back to normal. This could happen several times in an hour, and then not happen again for a couple more hours. I only noticed it at night, but it has not happened much for the past 2-3 weeks. I am wondering if they could be autonomic seizures.

Since January of this year I have also noticed a lot of joint pain. My mother blames medication, but even after I stopped taking a couple of meds I still have a lot of joint pain. It is especially bad in my wrists and fingers, though it happens in pretty much every join. Wrists, fingers, ankles, toes, back, knees, shoulders, and elbows. I have not noticed it too much in my neck or hips. My mother has arthritis, but I'm only 20. That seems a bit too young for arthritis. Plus it has only shown in the past 6 months or so. I have brought it up with my mother, but she gets annoyed whenever I talk about medical issues. I have also been taking fish oil, but it doesn't help. The joint pain and insomnia also keep me up at night and the joint pain makes using the computer, or even just reading (which I love), very painful, so I have pretty much stopped. At least as far as reading goes.

Anyway, I am just wondering if you guys think it could be related to possible seizures, or something/s else. Honestly some days I feel like I am falling apart. I just hope that doctors can fix me.

[Nakamova]

Joint pain is side effect of a few of the anti-seizure meds, so that could be a factor. There are other possible causes (like Lyme disease for instance or rheumatoid arthritis) which I assume you and your GP have ruled out.

As for the chest pain, it could be cardiac-related, or it could be related to something else due to the role the vagus nerve plays in the body. The vagus nerve basically runs along the route you describe -- from bellybutton to neck and up into the brain. It plays a role in heart rates, breathing, sweating, digestion, and muscle movements in the mouth. It even connects to the inner ear. (And it's a big deal in epilepsy -- the VNS implant that is used to treat refractory seizures is an implant that stimulates the Vagus nerve.). The path of the vagus nerve means that chest pain can actually originate from another part of the body (like the stomach), making diagnosis of a specific cause a difficult process of elimination. If your chest pains are lasting more than a few minutes though, I would think that warrants follow-up testing. I recommend that you push your GP to refer you to a cardiologist so you can rule out any cardiac factors.

[taz07]

I know exactly what you mean! I was searching epilepsy and chest pain (again) and I suffer what you describe, it's awful! I have simple partial seizures and grand mal (mostly in my sleep thank god). I also get quite painful hips on occasion (I'm 27) so I get the joint thing. I considered going into emergency the other night because I feel like one day I'm going to have a heart attack and just not know it because I'm so used to this nonsense?? it's terrible. Anyway, it's kinda relieving to know I'm not the only one but I see my neurologist again in a couple months and I'll get him onto it. Did you ever get any answers?

[Buffheart]

Yes! So much has changed! Last Tuesday, June 26th, I was diagnosed with Ehlers Danlos Syndrome (EDS) type three, hypermobility type, which explain the constant joint pain and joint subluxations (partial dislocations), among other things.


EDS is a collagen disorder, where the body produces defective collagen. Collagen is the "glue" that makes up roughly 80% of our bodies. All of our organs and most, if not all, of our joints are made up of collagen as well, so when collagen isn't being produced correctly it can potentially affect every organ and joint. Where I'm going with this is EDS can also cause Dysautonomia, more specifically POTS (Postural Orthostatic Tachycardia Syndrome), which can cause heart problems, chest pain, tachycardia, and a host of other symptoms. POTS has also been associated with Epilepsy, and, even though I still have yet to find a neurologist who believes me, POTS would explain a lot as well. Unfortunately I have to wait several months before I can see an autonomic specialist to get tested for POTS. Fortunately my GP believes I have Epilepsy and I have to get an EEG soon, possibly a week long ambulatory EEG. Won't I look funny walking around school like that!

[valeriedl]

Joint pain is side effect of a few of the anti-seizure meds, so that could be a factor. There are other possible causes (like Lyme disease for instance or rheumatoid arthritis) which I assume you and your GP have ruled out.

What meds cause joint pain? In about the last year hips have been hurting like crazy, espically when I get out of bed in the morning. Once I get moving around the pain will ease up, sometimes go away completely. Also if I'm standing or walking for a long time my hips will start hurting.

Also my back will hurt, I've always had back problems (I've gone to a chiropractor and he's done wonders for it) but the pain that I'm getting now isn't the same as it was that I go to the chiropractor for and it usually only happens if I've been standing or walking for a long time like my hips will.

Sometimes they will both hurt wither I've done this or not too.

A few years back my GP told me that I had the on set of arthris, it runs really bad in my family, but now that you said this I wonder if the meds could be causing it?

I take Depakote, Tegretol, Keppra and Lamictal. I've been on all of these for a long while.

[taz07]

oh wow...that must be a relief to get some definitive answers! thats awesome (all things considered, of course). i was diagnosed 8 years ago withseveral seizure types but no cause, and they dont think they'll ever know so... but i get all my tests re-done again this year just to check im not falling apart lol, so maybe time to bring up some new symptoms.

[Nakamova]

What meds cause joint pain?

Some people have complained of joint pain with Lamictal. I don't know about the other meds, but they may have that side effect as well. Another possibility is that osteopenia or osteoporosis caused by the meds is contributing to your arthritis and making it worse. Have you had a bone scan done?

[Nakamova]

Buffheart -- It's so great that you are finally getting some answers. I hope that EDS is easily treatable. Definitely keep us posted on what this means for your overall health and for your epilepsy.

[valeriedl]

Some people have complained of joint pain with Lamictal. I don't know about the other meds, but they may have that side effect as well. Another possibility is that osteopenia or osteoporosis caused by the meds is contributing to your arthritis and making it worse. Have you had a bone scan done?

No I don't think that I've had a bone scan. I'll ask my dr about it next time I go. Thanks alot.

[Bec.r]

Hi I'm bec iv just turned 22 and thought you might like to know I have rheumatoid arthritis I have had it since I was 9 yrs old I am on methotrexate for it sometimes I have to take prednisolone as well
I have been on so many drugs for it but my arthritis is so severe only the methotrexate works it is 5 times more common in women and can be hereditary it seems to be in my family
If I didn't take medication I would be stuck in bed in pain with swelling red burning achy joints (any joint and every joint sometimes 4or five at a time)
Morning stiffness is common and also standing for long periods or what not can make you sore
After I had my son 3yrs ago my arthritis came back worse my fiancé had to dress me and bring my son to me to feed as I could not lift him from pain or get out of bed

I just thought I'd share that unfortunately it is not uncommon arthritis in any age it's worth chatting to you doctor I have regular blood tests which have raised ra factor esr fbe lft c reactive protein
I hope some of this helps

I also developed epilepsy last year during a stressful period but am stable on meds but I have a brother with refractory epilepsy

[stilldancing_98]

I have always had some back pain. Mostly due to when I had My boy 14 years ago. I had to roll out of bed. Every day I would put him chair and push him.I tried other doctors and it didn't work. So I talked to my epileptologist and he gave a referral for me to a physical trainer. They helped me a lot. Now my heart skips and I have an ulcer and sever stomach problems over stress. And my doctor explained why. Go to your regular doctor for that. It could be reflux in your chest. That
s when the acids go up and down at night.You are young. This is your chance of getting a hold on it before it gets out of control. Don't wait like I did.Teresa

[Buffheart]

Buffheart -- It's so great that you are finally getting some answers. I hope that EDS is easily treatable. Definitely keep us posted on what this means for your overall health and for your epilepsy.

Thank you Unfortunately EDS isn't treatable. Symptoms can sometimes be managed, but they will always be there for the rest of my life.