New and need some major advice about my husband's journey!

[omgzitsmiranda]

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 neurologist 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 neurologist suggested against it, but now I'm thinking we should have anyway. Okay, so neurologist 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 neurologist the next day because they did NOT stop, were NOT letting up. So by the time we got the neurologist 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 neurologist 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.

His symptoms:
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."

So basically in the last two weeks [2 weeks tomorrow] he's went from having 1-2 complex partials [or so we thought] every few weeks to having a huge uprising of seizures that are generally a lot worse. They've slowed down a good bit now due to being on [900mg gabapentin and 25 mg topamax] but still having them nonetheless. They've increased in severity and I'm at a loss on what to do.

I thought you guys would probably have some ideas for me.

[omgzitsmiranda]

bump !

[littlemrsmitch]

I have never had an abmormal EEG in all my life. I have grand mal seizures and sleep seizures, and while the former is moderately controlled by meds, the latter never has been. Nothing's wrong with me, I "just have seizures."
The complexities of the human brain are amazing, and I for one am glad I don't have to diagnose and treat it. I have also been grateful to be the sick one, and not have to watch and try to help where I can. You are a caretaker, and I take my hat off to you. We E's would be in an awful place without you.
Your doctors are...um...outside their depth. Keep looking. You will eventually find someone who will validate you, and work for treatment with the both of you. It may be time to 'go to where the brains get together' as my GP says. Mayo, Ann Arbor, someplace where smart people all work together.
My prayers are with you. Really.
-b-

[Meetz1064]

first, I apologize for not having seen this thread earlier. I've been in and out quite a bit, so I missed it.

I admire you for being a caretaker, I am simply a patient with 4 types of E. Mine are all nocturnal, and fortunately for now, all under control. *knock on wood*

IMHO, the absolute first thing that you should do would be to get rid of your husband's neurologist, and get a new one. Doctor shopping, though it CAN be inconvenient, is really a good thing in the long run. Many doctors think that they are God, which they most certainly are not. They need to be reminded that YOU pay their salaries. *eyeroll* Sometimes I think a good kick up the arse would help as well.

TS is for some, quite debilitating, as it is your husband, especially in combination with other neurological issues. Combining it with seizures, I'm sure is quite taxing on his system. Flying through so many different meds isn't easy on one's system either--I've had that blessing with anti-epileptic drug's so I feel for him.

Putting your husband into an EMU is a WONDERFUL idea. Please do make sure that he is taken OFF his meds--it is really the only accurate way to get a true reading of what is going on in his head, especially since his diagnosis is not really confirmed--at least from what I've read, your hubby's neurologist didn't really seem willing to give a decent one.

And having that MRI done with contrast was also a very smart move on your part. Why on earth the neurologist would not want that done, I haven't got a clue. I am used to having them done on a regular basis (but then again, I've had a test-happy neurologist for more than 12 years now). Only once have I ever had a bad reaction to it, and that was the last one.

From the sounds of it, he's adding to the different types of seizures, but I'm not a doc. However, I will say that I get the falling sensation ones when I have a myoclonic--but then I also have a nice jerk or two (or more) that go along with it. I usually feel as if I'm falling off a cliff.

Auras ARE absence seizures in themselves. So when he tells you that he is having an aura, he is having yet another seizures :S

Keep in mind that if he IS diagnosed with psychogenic non-epileptic seizures, it does NOT mean that he is crazy. OK? It just means that there is no PHYSIOLOGICAL reason that can be found for his seizures. That's literally ALL it means. Don't EVER let a doctor tell you that he's crazy if they diagnose him with psychogenic non-epileptic seizures.

Yes, if he IS dx'd with psychogenic non-epileptic seizures, they'll suggest he go to a psychiatriast, and that's normal procedure. But it does NOT mean he's crazy.

Something else to consider--his diet, photosensitivity and allergies. A lot of us are able to help our seizures by changing our diets. I am one of those, amongst quite a few here on the forum. It turns out that I am a celiac patient, and once I switched diets (from a normal diet) things were better. I had started to switch over anyway--going over from normal to the GARD diet, and discovering the progress. But then the celiac dx showed up, and the diet became just a bit more strict With that though, came more progress with seizures control.

Some of us are photosensitive, and don't know it. Perhaps there are certain patterns--black and white, red and gray-- or other things such as flashing bulbs, the lights in WalMart, even a computer monitor that may bother him, and excite his neurons just a bit too much.

Stress, is another trigger--though he doesn't have too much since he's on disability now. However, he may be stressing about the problems involved with his care, and worrying that it's too much for you to carry....

You are the bomb in my book for doing everything that you have done for your hubby. Keep being his rock, and his advocate the way you are. It's people like you who make things better in this world.

Meetz


PS....I forgot to say: I didn't have any abnormal EEGs til I turned 40. That was 7 years ago, and I've had E since I was born......

[omgzitsmiranda]

first, I apologize for not having seen this thread earlier. I've been in and out quite a bit, so I missed it.

I admire you for being a caretaker, I am simply a patient with 4 types of E. Mine are all nocturnal, and fortunately for now, all under control. *knock on wood*

IMHO, the absolute first thing that you should do would be to get rid of your husband's neurologist, and get a new one. Doctor shopping, though it CAN be inconvenient, is really a good thing in the long run. Many doctors think that they are God, which they most certainly are not. They need to be reminded that YOU pay their salaries. *eyeroll* Sometimes I think a good kick up the arse would help as well.

TS is for some, quite debilitating, as it is your husband, especially in combination with other neurological issues. Combining it with seizures, I'm sure is quite taxing on his system. Flying through so many different meds isn't easy on one's system either--I've had that blessing with anti-epileptic drug's so I feel for him.

Putting your husband into an EMU is a WONDERFUL idea. Please do make sure that he is taken OFF his meds--it is really the only accurate way to get a true reading of what is going on in his head, especially since his diagnosis is not really confirmed--at least from what I've read, your hubby's neurologist didn't really seem willing to give a decent one.

And having that MRI done with contrast was also a very smart move on your part. Why on earth the neurologist would not want that done, I haven't got a clue. I am used to having them done on a regular basis (but then again, I've had a test-happy neurologist for more than 12 years now). Only once have I ever had a bad reaction to it, and that was the last one.

From the sounds of it, he's adding to the different types of seizures, but I'm not a doc. However, I will say that I get the falling sensation ones when I have a myoclonic--but then I also have a nice jerk or two (or more) that go along with it. I usually feel as if I'm falling off a cliff.

Auras ARE absence seizures in themselves. So when he tells you that he is having an aura, he is having yet another seizures :S

Keep in mind that if he IS diagnosed with psychogenic non-epileptic seizures, it does NOT mean that he is crazy. OK? It just means that there is no PHYSIOLOGICAL reason that can be found for his seizures. That's literally ALL it means. Don't EVER let a doctor tell you that he's crazy if they diagnose him with psychogenic non-epileptic seizures.

Yes, if he IS dx'd with psychogenic non-epileptic seizures, they'll suggest he go to a psychiatriast, and that's normal procedure. But it does NOT mean he's crazy.

Something else to consider--his diet, photosensitivity and allergies. A lot of us are able to help our seizures by changing our diets. I am one of those, amongst quite a few here on the forum. It turns out that I am a celiac patient, and once I switched diets (from a normal diet) things were better. I had started to switch over anyway--going over from normal to the GARD diet, and discovering the progress. But then the celiac dx showed up, and the diet became just a bit more strict With that though, came more progress with seizures control.

Some of us are photosensitive, and don't know it. Perhaps there are certain patterns--black and white, red and gray-- or other things such as flashing bulbs, the lights in WalMart, even a computer monitor that may bother him, and excite his neurons just a bit too much.

Stress, is another trigger--though he doesn't have too much since he's on disability now. However, he may be stressing about the problems involved with his care, and worrying that it's too much for you to carry....

You are the bomb in my book for doing everything that you have done for your hubby. Keep being his rock, and his advocate the way you are. It's people like you who make things better in this world.

Meetz


PS....I forgot to say: I didn't have any abnormal EEGs til I turned 40. That was 7 years ago, and I've had E since I was born......

First of all, thank you so much! I try my hardest to take care of him, but most of the time people ask me about him they come across like he's this huge burden to me and he's not. He didn't ask for all of these issues and none of this is his fault, so thank you so much for understanding .

It's just a huge mess basically. We've switched him to another neurologist, he's the head over the EMU, so we're waiting on that. It's in 2 weeks from this coming Monday. He's ONLY had the mri WITHOUT dye that they did for his head. The people administering that test said they felt like he REALLY needed to do the dye and the neurologist said "no, he's fine!" I feel duped that I believed him, I should've pushed for it. But thankfully my husband's general doctor is amazing and has said they would probably do that in the hospital during the EMU or before or something. But if not, then they would schedule it when he gets out of the EMU.

We're going in the right direction, it's just figuring out where to go from there once we get the EMU results back.

Another question, if you have the pseudoseizures do you feel the symptoms like with epileptic seizures? Like the hotness flashes, the "claminess", all of that? I was just wondering about that side of it.

[Nakamova]

Another question, if you have the pseudoseizures do you feel the symptoms like with epileptic seizures? Like the hotness flashes, the "claminess", all of that? I was just wondering about that side of it.

Pseudoseizures (currently called psychogenic non-epileptic seizures) can feel just as physically traumatic as seizures that are epileptic in origin. It's thought that psychogenic non-epileptic seizures may be caused by PTSD, and as a result the symptoms can resemble those of an anxiety or panic attack -- including temperature changes and clamminess. psychogenic non-epileptic seizures is very difficulty to diagnose conclusively though. Some neurologists will automatically assume psychogenic non-epileptic seizures in the absence of a positive EEG, but epileptic seizures can sometimes originate too deep in the brain to appear on an EEG, and frontal lobe seizures in particular can be misdiagnosed as psychogenic non-epileptic seizures.

It does sound as if you and your husband are going in the right direction. All best to you both. Keep us posted.

[omgzitsmiranda]

Pseudoseizures (currently called psychogenic non-epileptic seizures) can feel just as physically traumatic as seizures that are epileptic in origin. It's thought that psychogenic non-epileptic seizures may be caused by PTSD, and as a result the symptoms can resemble those of an anxiety or panic attack -- including temperature changes and clamminess. psychogenic non-epileptic seizures is very difficulty to diagnose conclusively though. Some neurologists will automatically assume psychogenic non-epileptic seizures in the absence of a positive EEG, but epileptic seizures can sometimes originate too deep in the brain to appear on an EEG, and frontal lobe seizures in particular can be misdiagnosed as psychogenic non-epileptic seizures.

It does sound as if you and your husband are going in the right direction. All best to you both. Keep us posted.

Okay thank you very much for getting back to me so quickly! That's exactly what I was wondering is if pseudoseizures could basically mimic every single thing about epileptic seizures and vice versa.

What do you suggest for the next step say the video EEG comes back "normal"? What are the further in depth eegs called? I can't remember.

[Nakamova]

There are some differences between the epileptic and non-epileptic seizures, but they can be subtle, and aren't definitive in every case. This is from wikipedia:

Some features are more or less likely to suggest psychogenic non-epileptic seizures but they are not conclusive and should be considered within the broader clinical picture. Features which are common in psychogenic non-epileptic seizures but rarer in epilepsy include: biting the tip of the tongue, seizures lasting more than 2 minutes, seizures having a gradual onset, a fluctuating course of disease severity, the eyes being closed during a seizure, and side to side head movements. Features which are uncommon in psychogenic non-epileptic seizures include automatisms (automatic complex movements during the seizure), severe tongue biting, biting the inside of the mouth, and incontinence. If a patient with suspected psychogenic non-epileptic seizures has an episode during a clinical examination, there are a number of signs which can be elicited to help support or refute the diagnosis of psychogenic non-epileptic seizures. Compared to patients with epilepsy, patients with psychogenic non-epileptic seizures will tend to resist having their eyes forced open (if they are closed during the seizure), will stop their hands from hitting their own face if the hand is dropped over the head, and will fixate their eyes in a way suggesting an absence of neurological interference.

The hope is that your husband's video EEG will point in a particular direction. If it doesn't, the next step might be a longer in-hospital EEG (over several days to a week). In the absence of a positive EEG, some doctors will suggest treatment for non-epileptic seizures (usually this means psychological counseling or therapy of one sort or another). Other doctors will prescribe an anti-epileptic drug to see if it helps -- if it does, that can potentially confirm an epilepsy diagnosis. A complicating factor is that some people get both kinds of seizures.

[omgzitsmiranda]

There are some differences between the epileptic and non-epileptic seizures, but they can be subtle, and aren't definitive in every case. This is from wikipedia:


The hope is that your husband's video EEG will point in a particular direction. If it doesn't, the next step might be a longer in-hospital EEG (over several days to a week). In the absence of a positive EEG, some doctors will suggest treatment for non-epileptic seizures (usually this means psychological counseling or therapy of one sort or another). Other doctors will prescribe an anti-epileptic drug to see if it helps -- if it does, that can potentially confirm an epilepsy diagnosis. A complicating factor is that some people get both kinds of seizures.

Thank you for clearing this up for me! He's going to be in the hospital for 5 days for the video EEG. They said if they get enough information in 3 days, he could go home; but that people usually stay around 5 days.

[omgzitsmiranda]

*In hospital now for video EEG*
So far nothing has showed. -sigh-

They're keeping him, waiting around to see if he'll have one of his "big" pass out spells. His neurologist said that if he's not losing consciousness or they're not "strong" enough, then they could not show up. So here's hoping that we'll figure this out.

[Nakamova]

How many more days to go?

[omgzitsmiranda]

How many more days to go?

Probably staying until tomorrow. Been here since Monday. Doctor said if the seizures just aren't "strong" enough, then they could possibly not show up at all. They're waiting around trying to see if he'll have one of his big pass out ones or not. Knowing his luck he'll get discharged and THEN have one lol.

[iluvscoobydoo04]

Hope all is going well and they get the information they need.

[paradise survivor]

Wow I read your first post and besides the t/s there are many similarities to my own experiances, including migraines without pain, just loss of vision. The brain is really complicated and we have justed scratched the surface. fortunately you two are a formidable pair