I don't know if this is allowed, but I didn't know who else would be better at support/advice/helpful-ness than you guys, so here I am!
Let me give a little back story.
My husband has Tourettes Syndrome and has for YEARS [basically since he was in 1st grade] but wasn't diagnosed until October 17th, 2008. I filed for disability for him because his TS [i'm going to shorten it] had gotten so bad that he could not keep a job, no one was giving him a chance and they were making him do things that physically he could not do with how bad he was tiqqing. So basically we were at the cross road on what to do, so we decided to file and wait it out. Well, he got on it the 1st try for TS, asthma and ADD. If you know anything about Tourettes you know that people have their bad times/bad days, but also their good times/good days. It's just a wax and wane kind of thing.
Okay, so we got that out of the way. Got him on disability, he still has TS. We've tried every medicine out there for TS, nothing works or it will work for a month, then stop. Up the dosage and the TS fights back against it SO bad that he has no choice but to come off of it. The only other medicine that worked made him sleep NO JOKE 20 hours a day with horrible, deadly nightmares and then the 4 hours or so he would be awake he would be tiqqing like crazy. It wasn't ~really~ helping, just making him sleep. But he tiqs in his sleep anyway.
Okay, so 2010 comes around. It's around August and he tells me that he's been feeling "weird" and he's been getting headaches [he NEVER has a headache. EVER.] So I told him if they kept on for a couple more days then we would take him to the doctor, so it kept on & we took him to the doctor. We took him to the doctor and his regular doctor said it sounded like seizures, which through us off guard, we were just thinking low blood sugar or just a cold or something.
He referred him to a Neuro in August 2010. We went and he was sent for a CT scan, which came back fine. Okay, so that's good. Had an EEG at the office, it came back with "eh" results, nothing "too" abnormal, but it wasn't completely normal either. Was sent for MRI which came back with some slight "scarring" but nothing "too worrysome" okay :/. The MRI people suggested having an MRI done with dye just to make sure, but the Neuro suggested against it, but now I'm thinking we should have anyway. Okay, so Neuro said it sounded like he was having "complex partial seizures/temporal lobe seziures." Put him on Keppara, was on it for a month-2 months and it made his Tourettes really bad, so they had to take him off of it. They switched him to Gabapentin [Neurontin] and sent him on his way. It seemed to help a good bit, he only had his episodes 1 time every month or so..
Que to October 8th 2011 [his birthday]. He had been fine, completely fine. He was really tired ALL day, he had slept "good", was eating, wasn't doing anything excessively tiring or anything like that. We had a big family cookout for his birthday, we hung out, ate lots of good eats, just had a good time. Most of the party he felt "tired" and kept overheating is the only way to describe it, he just said he felt really hot; even though it wasn't really that hot outside. The party continued, he went inside for a little bit to cool off, I asked him if he wanted to lay down, he said no. Party went on, people left; he went right to bed at 8pm just straight out, never woke up until 8am the next morning. Woke up felt "better" went about his day, then later on felt tired all of a sudden again. We were moving the bedroom around so we could put up some shelving and he had somehow gotten his face/temple area "stuck" in between the bed and the riser [I don't know that this contributes to it, just adding this in there] but he had already been feeling "off" before that he said later on.
Okay, so cut to the next day [the 10th] he was fine, excessively tiqqy though. We went to Walmart to get some groceries, stopped by Zaxby's and he said he just suddenly felt sick to his stomach and "off" again. Then he looked like he was having one of his "episodes" like he has before. It was just the starey kind, where he could kind of respond, not the grand mal or anything.
So I brought him home, put him in the bed because he felt super tired and let him rest it off. By the time he woke up he continued having them back to back for 2 hours before I figured I should take him to the ER. I took him to the ER, who then stuck him in the waiting room for another 2 hours, then in the back room for 1 hour, did a CT scan for "brain damage" then sent him home. Did nothing to STOP said seizures, did NOTHING really. Just told him to "wait it out." ----> as you can imagine this did NOT sit well with me.
We followed up with his Neuro the next day because they did NOT stop, were NOT letting up. So by the time we got the Neuro for his appointment they kept him waiting because they wanted to do an EEG on him to see what was going on. Okay, fine. They gave him a double dose of his medicine and let him sit around for it to kick in [am I crazy or is taking a nonepileptic medicine before trying to find seizure activity a dumb move?] Anyway, so they were just getting ready to hook him up and he went unconscious and was twitching, not like VIOLENTLY but enough that you could DEFINITELY tell something was happening.
They did EEG. They said if it started going crazy, then the plugs had came off, so I went to get him because it looked like the woman had described if they had came off, but the doctor said "no, it's fine" but the woman said 4 of them had came OFF! Therefore he didn't get an accurate reading.. But then the doctor still said everything was "normal." He insisted that because Matt has these episodes and THEN a headache that he's having migraines............ but everything I've looked up for migraines or even the migraines without a headache does NOT fit with him. All of his symptoms fit in with the seizures that they told him he was having to begin with. How can you go from having seizures to now you're just having migraines without a headache, but wait you have a headache after you wake up from passing out? Doctor told him DO NOT go to ER again because this isn't a big deal...
Seizures did NOT stop. I waited until noon the next day, took him to ER at regular doctor's hospital area. They put him in the backroom immediately, they gave him ativan to try to get the neurons to quit firing, which helped a lot. FINALLY after at least 72 hours of seizures, they had calmed way way way down. They said his blood sugar was slightly low, so they gave him foods to try to get it up. They recommended going to another Neuro in their area, okay fine. They wanted him to do the EMU [epilepsy monitoring unit] for 5 days. So he goes for that November 7th - November 11th.
Does anyone have any advice about all of this? Have you ever dealt with a similar issue? Have you ever had a normal EEG but still having problems? I've read online about a lot of this happening to other people, but it'd be nice to be able to talk to someone on here.
He used to just have "starey" seizures [partial complex]
Now he's developed "falling" sensations, tingling, and going unconscious along with the starey.
he feels "whooshes" like adrenaline rushes.
he feels auras before a lot of them.
he's losing consciousness sometimes with twitching, everytime he has had one of these they've gotten worse with the twitching/length. He's had 6 of these since 2 weeks ago.
he feels tired ALL the time because he's having such big episodes of them.
Any ideas? I need some major help! They've been discussing "pseudoseizures" but that right there makes me feel like they think he's making it up because they've mentioned him "possibly" making up his TS. My husband has a legit disorder, I wish that doctors didn't just make everyone out to be "crazy."
All I can say is hang in there, keep educating yourself, and keep fighting for him. Hopefully whoever he's supposed to see in November will be competent enough to get to the bottom of it. Good luck.
Thanks for the input/support nonetheless
I'm not sure what exactly they're talking about because they won't hardly tolerate me asking any questions at this point :/. The pseudoseizures from what I got online, I may be confusing this though is seizures that people tend to go into their selves for attention [such as to get out of a crime is an example they used online] or I may be getting that confused with this other seizure like disorder that is "faking" basically. BUT there is another one that isn't "faking", it's a psychological issue, but it's because of something traumatic happening and it usually shows up before now.............
BUT we're putting all of his symptoms together from the last year or so and adding them up. If it's not seizures then I'm going to have him tested for lyme disease/lupus/MS because a lot of his other lingering symptoms fit into that too. It's just going through the whole route of things. I like having a game plan.
I don't pray & hope he has seizures, but I do pray & hope SOMETHING shows up on the EEG so we finally have some relief/answers for his sake at least. I want him to know something so he's not going crazy either. I think I'm driving us both insane lol.
Thanks for all the support! Will definitely report back
I have absolutely no experience with seizures or anything like this, but *hugs*. I'm sorry you have to deal with this, and it's the WORST feeling in the world when doctors think you're faking when you're not - it's like you can see the lightbulb go off and they just stop trying to help at all.
We don't deal with this specifically, but my daughter does have a neurological disorder.
Some general thoughts:
There are a zillion neuro disorders, some we know about and many we don't. Some things are very obvious to diagnose and some, sadly, are not. My daughter's has not been. There is rarely something as definitive as a blood test to say yes, this is it, she tests positive for this thing and this is how we treat it.
When it comes to dealing with multiple doctors, it is important to have a good team - which is difficult to assemble. It often feels like you're playing a game and no one will tell you the name of the game or the rules and to complicate things, they also speak a different language. The things you need are there, if only you knew what to ask for. It's VERY FRUSTRATING.
If the doctors you're dealing with won't answer your questions, find other doctors - this can be a good thing because you have time to prepare and intake appointments are often quite long with a lot of question and answer with the new doctor. Write down your questions ahead of time. Deliver them CALMLY. Ask to record their answers, or at least take notes. Keep a journal in the time leading up to the appointment of what happened at what time. I have years worth of notes for my daughter. At one time, we thought it might be food related so we logged what she ate and when she had problems. Video tape whatever you can, even when he's sleeping. Have him describe, on camera in the moment if he can, what's going on and how he feels and if he as what you think is a seizure, tape it. Put all this on a memory card to leave with the doctor, make a copy of your notes for them to keep as well.
It is SO FRUSTRATING when you have a serious, life-altering issue going on and everyone seems to be doing random things that don't help and no one is taking you seriously. We are on our 4th neurologist for my daughter and we've finally found, I hope, a really good fit.
Also, has he had any infections? We have found that my daughter's issues get MUCH MUCH worse when she's sick - ear infection, bladder infection, flu, etc. I can usually predict when she's got an infection before she has outward symptoms because her issues get so much worse.
Best of luck to you. I KNOW how frustrating it is because you think, her is my loved one who is suffering, SOMEONE FIX IT and it feels like no one is really jumping in and DOING anything.
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