[Research] Oh no -- here comes the sun

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I'll confirm what Tam Bam said above and say true for me, too. I get horrible muscle spasms in my back. The muscles contract and twitch at the same time. My neuro says it could be epilepsy but most likely not. But AEDs seem to make it an order of magnitude better, and I'm noticing a pattern in my seizure diary. The spasms seem to follow auras or seizures. The back spasms hurt like the devil, while they are happening and for hours (days?) afterwards. They affect my back, neck, etc.
 
Thank you for posting Endless! It's good to hear again that it's not nutty for us to think it could be seziure-related. It's tough sometimes to know what's what, especially when there's a back injury in the mix.

I just dropped of the seizure diary off at his GP's office. Let's hope he bothers to read it. Plus I had him take one for the record of the people doing the psych assessment today. I'm all nauseous about that right now. It's two hours, and he doesn't even get to look at his inquisitors -- they're behind one-way glass. Partner's also been having angry spells this morning, so that doesn't bode too well. Hopefully the assessors read the diary at some point so they can get a better understanding about what's going on. Blech. I hate all this crap.

Now I have to go to work.
 
I'll confirm what Tam Bam said above and say true for me, too. I get horrible muscle spasms in my back. The muscles contract and twitch at the same time. My neuro says it could be epilepsy but most likely not. But AEDs seem to make it an order of magnitude better, and I'm noticing a pattern in my seizure diary. The spasms seem to follow auras or seizures. The back spasms hurt like the devil, while they are happening and for hours (days?) afterwards. They affect my back, neck, etc.

:agree:

I've had terrible pain since the first wreck I was in and I do notice a pretty significant difference with the seizure meds in the amount of pain and muscle spasms. Could be nothing, but I notice that a one month supply of painkillers & muscle relaxers now lasts me four to six months, so it's definitely worth asking a good (notice the clarification there ;) ) doc about.
 
Thank you so much all of you -- I can show partner your responses so he can understand why I'm pursuing seizures meds before pain meds. I also have a concern that the wrong pain meds will only worsen the pain, because they may lower his seizure threshold.

I have to send partner later this week to hand his seizure diary, plus a letter to the neuro, and ask for a follow-up appointment and further testing. Maybe if his GP reads the diary he'll just do it, but I don't trust him to think that deeply. Or read.
 
Hi again Occb,

I wanted to answer your question regarding the tired issue. I meant to earlier and forgot. It could be the higher dosage of his AED med. It does it to me when the doc increases my dose. He'll get use to it in a few days and bounce right back. This is the norm.

Oh yeah, also about the pain thing don't get me wrong it is not as bad any more with me. When I started to take the AED's it was like magic. The pain started to lessen and as I started to increase the dose the pain lessened even more. But my pain is not a constant pain every day. I get this only before a seizure or after a seizure (Maybe 8-4 hours before or 8-4 hours after a seizure). Weird eh? Feels like a constant spasm in a certain muscle that will not release then all of a sudden it goes away as quickly as it came.

I hope your partner's doctor visit goes okay. I am interested to know how it goes if you do not mind sharing.

tam bam
 
I don't mind sharing -- I will let you know once I know.

Good to hear that the AEDs did help. I thik he's having seizures at night, which may be what's causing the pain. He had two days in there with greatly reduced pain, and then this morning, his legs were in agony again. his memory about how long it lasts and how bad it is is also spotty, because sometimes he says it's not bad, then an hour later he'll complain that's it's been agonizing all day. This is confusing sometimes.
 
WOO HOOOOOOOOOOOOOOO!!!

Phase one fo getting the GP to do as we say has begun. The psychs at his two hour assessment did go and read the seizure diary, and spoke to partner and concluded that he indeedy DOES NOT need a psych, but DOES need a neurologist. WOOT!WOOT! What was also concluded was that he needs pain meds. Duh!

This recommendation will go back to his GP, who we're going to annoy for a referral to the E clinic. In addition, he was recommended to be taken off Effexor and to continue only with the Lamictal.

Yaaaaaaaayyyyyyyy for the ultimate effectiveness of keeping a seizure diary! I am now going to call my parents and tell them.
 
Yesssssssssss!

I'm so happy and excited for you both.
 
CHA-CHING! Jackpot!

That is great you guys! Fantastic! Phenomenal! Lots of other awesomesauce adjectives! Your hard work has paid off! Woot! Woot! Woot!
 
Yaaaaaaaaayyyyyyyyyyyyyyy!

I feel so vindicated right now. Partner, however, sounded tired. Tired but pleased.
 
This is the most absolute best news yet on this forum!!!!!!!!!!!!!!:clap: I am so glad that your hard work has finally paid off for your partner. I knew there was hope for your partner and by darnit you found it for him. It is sometimes a long and hard road but you found it. You and your partner's story is such an inspiration to the ones in the FLE community.

WOOT WOOT for you and your partner. :woot: I wish I could come up there and high five the both of you in person and doctors who said this. This is GREAT NEWS!!!!!!!!!!!!!!!

tam bam
 
I wish I could hug you and everybody on this forum -- you've all been instrumental in getting us this far, in helping me push through despite the obstacles, in giving me the best advice possible (keep a seizure diary)... and now that that's paid off, maybe partner will listen to me regarding the evils of caffeine? And maybe help me change our diet?

Which means keeping an even MORE accurate seizure diary. But now that doesn't seem so overwhelming as before.
 
Great! Now I can tell my co-worker to suck it too! But politely, of course.

I sympathetically sat by and listened to her health and family woes and supported her through them, but when I spoke about partner's issues and explained that he didn't need a psych, she answered with a tart "you don't know that!" I protested that I did, but she made me feel small and dumb and made me cry. Now I can tell her the psychs agree with me. HA!

In a few more weeks until she's back from vacay. I'm going to relish the conversation.
 
Holy -- I totally forgot to mention this, but partner's Mom called on the weekend. Would you believe she asked him about his health AND listened to him? He explained the seizures to her, and she put two-and-two together and realized that a lot of his behaviour in youth was because of seizures.

Add to that she offered to give him some financial support instead of telling him it's mind over matter and he has to get a job.

She just about exploded my brain with her caring.

I think partner's brother realized that what happened the night we were at dinner with his new girlfriend was a seizure, and really took it to heart and spoke to the folks, and now they're paying attention.

Dood, it's like there was a tear in the space-time continuum, and what was up is now down. It's like that Trek episode with the two Kirks...
 
You said it Nak! Doctors who listen AND a sympathetic mom? I'd have never guessed it in a million years.
 
I was going to ask what you were going to tell mom and the family. What the heck got into them!! That is a shocker there!!! My mom and I also realize this when I told her the news when I was diagnosed too. We put two and two together that my odd ball behavior as a child and teenager was E. related. My mother and I, heck my whole family and I have been through a lot with me with my extreme behavior over the years. Epilepsy sure does explain it all so I understand what your patner is going through right now. I am sure his brain is doing a lot of processing right now and he will be putting a lot of two and two together over the next few days.

tam bam
 
He's been putting a lot of two-and-two together for the last month -- the more I recorded, the more we understood what was happening. We're at a point where it doesn't seem so new anymore, and actually seems like kind of a relief.

As for mom -- her other son has always been the font of believability, and if he told her it is so, she will believe it. I know that partner has told brother more than once about it, but he didn't believe partner, until I joined the chorus.

I'm glad we spoke openly about it to him, otherwise we wouldn't have had this breakthrough with the female parental unit.
 
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