[Research] Oh no -- here comes the sun

[occb]

The sectioning off doesn't sound crazy at all -- you just know your body well, better than most, I'd say.

The headaches pre-existed lamictal, and today will be the first day on the increased dose for partner, so I know it's definitely not that. I've also spoken with a friend who has FLE (but is not taking lamotrigine), and she gets exactly the same kind of headaches as he does, and, as with him, TMJ and Migraines have also been ruled out.


It's odd how everybody experiences different things.

 

[Zoofemme]

I don't know so muc if I know my body well...my appendix ruptured in Aug of 08 because I dismissed it as just "gas" for 3 day :roflmao: I am VERY bad about that! IF it isn't a headache it MUST be gas :roll:

 

[occb]

What? Just gas? lol

You're one tough cookie!

 

[Zoofemme]

Tough, maybe...stubborn, definitely.

I truly hate going to the doctor's office for no good reason and it's embarrasing if they tell you nothing is wrong. The pain has to be excruciating/ debilitating, I have to be throwing up all over the place, the fever has to be high, or I have to be frightened out of my wits.

 

[occb]

Partner's the same way, and protests every time I try to get him to a doc. Any doc. The problem is that too often they do tests on him and nothing shows and so he's sent home having been medically tortured and he still doesn't get help *sigh*

But then, he's stubborn about other things too. I'm trying to encourage him to take baths with Epsom salts, because they relieve his pain for a little while, but do you think he does it? Oh no... silly goose! There's only so much head/brick wall I can handle in a day.

 

[Inaara]

I don't know so muc if I know my body well...my appendix ruptured in Aug of 08 because I dismissed it as just "gas" for 3 day :roflmao: I am VERY bad about that! IF it isn't a headache it MUST be gas :roll:

I did that for a ruptured colon once, so don't feel bad, lol. A five day hospital stay and major surgery later and I'm still just as bad about going to the doctor. I think it's genetci - my dad's appendix almost burst before he finally went to be seen for it. :roflmao:

 

[seizingbeauty]

I went from being a hypocondriac to being totally anti-hospital. Never ruptured anything (knock on wood) but have pop a bunch of joints back into place. Don't think I'd stand up to the kind of pain invovled with exploding body partsonder:

 

[occb]

Well SIL went to the other doc today, and the other doc is hesitant to take him on due to professional blahblahblah. Her advice was to print everything up for the neuro, drop the paperwork (diary + history) and basically become a nag, since technically this dude who refused follow-up is now his neuro. Also to follow up with the E Association and give them a copy of the paperwork so they have it on file and see where the advocate got.

*sigh* I'm tired. I'm not a very organized person, and since partner has memory issues, communication issues, on top of not feeling well most of the time, it's going to be up to me to follow through with everything. I'll get on updating the diary and history for the docs this weekend, and buy ink for my printer next week, and maybe I can take some time off work again, or flex my work day to go into the neuro's office, deliver it in its entirety and nag them about when I can expect to follow up with him.

At least we have more useful meds for him right now. This is going to be a long, frustrating fight.

 

[Nakamova]

Lets hope the meds make a significant difference, and everything (including dealing with doctors) gets better and easier.

 

[occb]

Hopefully Nak. Only day one, and so far so good.

I'm over the disappointment now, and on to the next step thinking. I just posted in the kitchen seeking advice on how to write a medical history and what terminology I can use in the diary in order to make them stand up and take notice. If you have any advice to give there, I'm taking it!

 

[occb]

Had to re-post because I exceeded the time limit for editing the previous post.

Thursday, March 25, 2010

Lamotrigine 300 mg
Effexor XR 150 mg
Xanax .5 in am .5 at 9 pm
taken 9:15

I have to wake him and get him to the pharmacy this morning -- we can finally fill the increased lamotrigine prescription. Yaaay!

About 1/2 hour into sleep last night, he began the stomping/bicycling, followed by chomping. This would last 5s, stop for 15s then start again. I only recall three times. This morning appears fairly peaceful.

Woke up with leg & back pain and an all-over bad feeling. Took increased dose today. Felt a little different, but nothing noticeable. Experienced 1 episode of epigastric rising at noon, otherwise nothing noticed. Cloudy day so wasn't too affected by light.

9:30 pm had an episode of staring lasting nearly 10s, with loss of awareness. Felt okay after.

Didn't notice any restlessness during sleep.

 

[occb]

Friday, March 26, 2010

Lamotrigine 300 mg
Effexor XR 150 mg
Xanax .5 taken 11 am
taken 9:15

Wake up today and he felt terrible like yesterday -- but no description of what that means. It's not extreme pain, but he doesn't seem to have the language to describe terrible. It may possibly be confusion, exhaustion, and depression/anger, since he usually cannot find the words when experiencing these kinds of moods. He was depressed this morning, and angry with me that my mind is pre-occupied with how to organize the seizure diary information, when he doesn't see it being of any use. He's falling into his hopeless hole again.

He has a 2-hour psychiatric assessment on Monday morning -- I can't take the time off work, but I will see if I can flex my time to, at least, bring him there. That way I can ensure he takes the seizure diary with him, and hands it to the doctors. Perhaps with the documentation of his experiences we can get them to tell his doctor to get him evaluated for epilepsy.

I just spoke with him on the phone (11 am) he does not recall our morning conversation, even though he was on the couch with me, and he not in bed between sleeps. My assessment of confusion, depression and anger/irritability was accurate. He's still depressed. The moods do not bode well for the Monday assessment, the diary may be of help though. I need to speak to my boss and see if I can take the morning off to go with him.

3 pm -- spoke to him and his mood was better. No other episodes today. He's been able to focus on music and playing guitar, which is fantastic, since he's had problems with that for months now.

Has been confused all day as to what day it was, even though we talked yesterday about what day it was (common conversation for us). Apparently has had that headache since waking up this morning, but, for some reason, had been unable to articulate that.

6:20 sudden onset nausea and abdominal pain. Just finished eating, but he says the pain and nausea feels like he's going to be sick from starvation. Most severe for 30s, and has begun to fade already.
6:37 sudden onset pain lower right abdomen (before it was the lower left). Severe for 20s, and beginning to fade.
7:50 sudden onset exhaustion and mild dizziness, which stopped 3 minutes later.
10:34 sudden onset of mild dizziness, nausea, exhaustion and depression. Acute for 7 minutes and then stopped. Accompanied by cold sweats.

 

[occb]

Saturday, March 27, 2010

Lamotrigine 300 mg
Effexor XR 150 mg
Xanax --
taken 9:30

Woke up with leg pain and the headache again. It seems to be the worst toward night and first thing in the morning. Sleep appeared uneventful, but I don't know for sure, since I was asleep long before he was.

Witnessed three longer stares first thing after wake up. Lost awareness for all three (I spoke to him and he didn't recall me speaking during them). No after-effects though.

10:02-10:07 Sudden onset nausea. When it went after 5 minutes, it took his headache with it.

2:40pm Suddenly stopped speaking and stared for 3s, moment of confusion then resumed speaking. Doesn't remember staring, does remember forgetting what he wanted to say.

6:10 sudden onset exhaustion. We were talking, I turned away and turned back and he had closed his eyes while sitting up and was gone for 15s.

Laid down for a nap at 7. At 8:30 began lip-smacking then scratch his face and raised his arms above him and held them there for over a minute then scratched his face again and woke up.

 

[occb]

Sunday, March 28, 2010

Lamotrigine 300 mg
Effexor XR 150 mg
Xanax --
taken 9:50

Woke up with severe pain from the waist down. Had a couple of staring spells but no loss of awareness. Took meds, and he's doing okay today. He's in a fairly good mood, considering the pain, and chatty. No other episodes so far and it's nearly 1pm.

1:50 -2:05 synchronous quick rhythmic jerking of the right bicep and left hand. Would jerk for 3-10s, then stop for 3-10s, then start again. During the jerking he was in a happy, giggly mood, but when the jerking stopped, sudden onset of severe depression for 5 minutes (2:05-2:10).

He reports fluctuating moods all evening. When I came home, he was in a good mood with decent energy, and within an 45 minutes, he was so exhausted he couldn't keep his eyes open. He was on the couch just falling asleep while eating, slurring his words. I asked if he had take some xanax, and he said he couldn't remember. We went to bed, and 15 minutes into sleep, up goes his left arm -- straight up into the air and he rubbed his armpit with his right hand. He ket his arm up for at least a minute. When it started looking like it might fall on one of us, so I grabbed it and gently pulled it down, at which point he woke up.

That exhaustion was unusual. He feel asleep chewing food! He never does that. I wonder if lamictal can cause that kind of exhaustion, or if it has to do with xanax and/or pain medication

 

[Nakamova]

Sorry if you've answered this before -- Is the severe pain from his back condition, from the seizures, or from both?

 

[occb]

We're not sure what the source of the pain is. The day he woke up with his legs in a ski jump position was a bad leg pain day, so I think seizures have something to do with it. Partner doesn't think the leg pain is due to his back at all, because it doesn't feel like nerve pain to him.

Leg pain was something he had in highschool too, but he always attributed it to too much walking. Maybe it wasn't.

 

[Nakamova]

If there is a lesion on a particular part of the brain, the seizure could manifest as pain, with or without the tonic or clonic muscle activity. And some circulation problems can also contribute leg pain, particularly when it occurs while lying down. I guess you know how murky pain diagnosis and management can be...

 

[occb]

Murky indeed. See, this is why we need doctors to take this seriously, because we can't differentiate what's what.

 

[tam bam]

Hi Occb,

I decided to post you here instead of e-mailing you today since you have some odd things going on with your partner that I can answer for you. The arm lift thing that your partner is doing lately is more than likely a seizure. I do this and this was documented on my 2nd EEG. This is how the neuro caught my seizures. The neuro saw me extend my arms out and I think that is what your partner is doing too. This is normal with FLE. Also, his seizures may be changing. Watch for this. Mine do all the dang time especially with the seasons for some reason I have noticed.

I noticed you posted about the leg pain as well. I have mysterious pain in my body too. Neck, back, shoulder and even hip pain from time to time. I asked the epileptologist about this and he said that I should have no pain during my seizures, which is true, but I think he miss understood me, I have this before or after the seizures. I think the seizures causes muscle tension or cramps of some sort but I am unsure of this as well. I still have this problem even though I am on AED's but it is not as bad. It is definitely the seizures though causing this. I am living proof. I do not care what any doctor says. It just doesn't happen during the seizures the doctor is right about that part. I wish I could talk to him about the pain part again because he looked perplexed on that issue but we didn't have time to go indepth on that issue. Perhaps it is an undiscoverd symptom of FLE that these epileptolgists do not know about and we need to tell them about. These doctors are still learning about us. onder:

tam bam



tam bam

 

[occb]

good to see you here tam bam! I'm sorry I haven't emailed back -- I've been busy with gathering the info for partner for his assessment today, and I didn't have time for the lengthy response it would have taken lol I'm glad to see you here!

Yeah, I know the arm thing is a seizure. He's done this on and off since childhood. I was wondering about the sudden extreme exhaustion -- he hasn't had that in a while, and I used to think it was med-related, but now I'm not so sure anymore.

The pain in the legs -- we suspected that it was seizure-related, but it's good to hear from you that you experience it too. I'm sorry the AEDs don't help all that much with it Thank you for posting your experiences tam bam -- it makes the whole journey that much easier knowing we're not the only ones out there.