Medical Forum / Diseases and Disorders / Epilepsy / April 2006
Imprtant question
|
|
Thread rating:  |
kenny - 07 Apr 2006 21:46 GMT Hi everyone! Since I've know my boyfriend he had some seizures. I saw one in January 2005 and one this week. And the last one wa very strange for me. We laid in bed at about 12 o/c at night, and as I put my hand in his, I felt a very strange feeling (that I can't explain) and I just knew that he would have a seizure. He has been seizure free for about one year. At about 12:30am I fell asleep. But at 2:01am I suddenly woke up and the feeling was there again. I felt as if I was waiting for it to happen. And at 2:05am he screamed and he had another seizure. That was so unbelievebly strange and I'll never forget this feeling. I hope someone can help me with this question. Is it possible that I have the aura? My boyfriend never had an aura, for him it was always a surprise. How is that possible? Can anybody help?
I wish you all the best!!! Thanks Kim
G. - 07 Apr 2006 23:39 GMT No. An aura is result of specific electrical firing that precedes some types of seizures. You can't 'catch those' from another person. What *might be happening, is if he uses Anti-Ep. Medications, those could be wearing off during the night and **he's having Nocturnal Seizures (more than one). If he rolls around or moves abruptly during a szr. onset (even a minor one), he could wake you that way, and then you're awake to witness a Second one. You can't 'catch it' or pick up any of our internal feelings that go with the various szrs. G./.
vburke@gmail.com - 08 Apr 2006 13:18 GMT Well, my husband just started with seizures a few weeks ago. But the night he had is first grand mal, our 2.5 year old son would NOT be alone with him. He'd scream until I came into the room. He would NOT let his father give him a bath or read bedtime stories without me there. He ALWAYS does this without me there, so this was really weird. Right after bedtime Steve had a partial seizure (a doozy, according to him) and 6 hours later had his first generalized seizure.
I think our son sensed it. I told our neurologist and she said she wasn't surprized. They have dogs that sense seizures, right? Maybe some people are just better attuned to picking stuff like that up. No, not an aura, but just sensing. Weird.
G. - 08 Apr 2006 15:13 GMT > Well, my husband just started with seizures a few weeks ago. But the > night he had is first grand mal, our 2.5 year old son would NOT be [quoted text clipped - 8 lines] > some people are just better attuned to picking stuff like that up. No, > not an aura, but just sensing. Weird. Any chance he saw a seizure *before the one you saw? Is he old enough to be able to tell you that? There's a difference (if this is what it might have been) between sensing something ahead of time, and seeing behaviours that might predict a szr. onset like one that they saw before. That's why I'd guess he'd seen one elsewhere before. G./
vburke@gmail.com - 09 Apr 2006 13:28 GMT Its possible he saw simple ones, but that's all he would have had before then. And no, he's only 2 and wouldn't really be able to communicate it. I was with both of them the whole time, and nothing in Steve's behavior suggested to me or him that he was about to have seizures. Right after my son went to bed is when he had (at least) a simple one -- they were coming to him as auditory and visual seizures.
G. - 09 Apr 2006 18:42 GMT > Its possible he saw simple ones, but that's all he would have had > before then. And no, he's only 2 and wouldn't really be able to > communicate it. I was with both of them the whole time, and nothing in > Steve's behavior suggested to me or him that he was about to have > seizures. Right after my son went to bed is when he had (at least) a > simple one -- they were coming to him as auditory and visual seizures. So has the Neuro had long enough (with tests for your husband) to know what type he had, and if there's any *chance of him having another? You said on earlier note that this was the Only one he's had? Usually they might run an EEG and MRI first. (Electro- Encephalogram -- measures Electrical Signals put out by various brain areas during the test-- several of the Main ep. types produce a specific signature, and Magnetic Resonance Image -- takes a 3D Internal Photo of the brain that would show any strokes or blood clots that might produce a szr. They would usually only do that one if there was ongoing e.g. headaches or reactions he was having that might indicate such internal damage might be permanent and measurable). Some people can have 'one of' seizures caused by illness, environment they work in (refineries, factories, etc. that have chemicals in the air), or result of injury (car accident, blunt force trauma to head, etc. ). Some people could even display symptoms that look like a seizure, but are caused by e.g. erratic heart rate or other conditions that can mimic what most of us here have experienced. As you'd expect, it's important to try find the *source of what brought it on, since that would determine the types of treatment they'd follow. A seizure from a temporary infection, might not require long term pill use, while some types of seizures some of us have *do. And certainly if the seizures were a sign that there's something else going on physically or in his workplace (or even at home), you'd want to eliminate those as possible sources of what's happening. There are several posts up, if you still have access to last week's range of posts, that list **websites some of the regulars have built, and 1-2 I posted about last Monday that has an omnibus sort of post with about 8 links in it. If you don't see those, let me know (email) your address you want it Forwarded Inline to, and I'll send it along. I usually post it about each 2 weeks or so here, as new people are subscribing all the time and it saves relearning what's already available online. Both Julie's and Howdy Dave's sites are valuable as information sources based on experiences they have had or contacts who have provided information for e.g. the Idaho site that Julie manages for them (and us ! ) . I might have mentioned earlier, if you go to the First Aid for Seizures chart on the Idaho site, the Symptoms of the different szr. types are described on that page. (You can get a Printable version w.o. the colours by clicking on the link at bottom of the page?) That can be handy (for you) if you don't already know the Type of seizure he had. It's also difficult, I expect you know, to base a full Diagnosis on *1 seizure. Unless we can find where it came from or what caused it, he might not have another, if e.g. it was environmentally caused (poison gas, allegy to something he doesn't usually eat, etc.). Maybe others will have ideas too as things develop here. We have about 10 timezones worth of readers and many varied experiences. And not everyone reads the group on weekends, so you might get replies **during the week** to your questions. (I usually sort my messages by Subject Title, so replies on the group stay together, if you don't already. It saves reading through older messages that aren't what I'm looking for at that time. ) /G.
vburke@gmail.com - 10 Apr 2006 13:18 GMT Our neuro has run away screaming :) The tests (ct and MRI) were normal and so she can't tell us anything. She literally had a look of a deer in headlights talking to us. All she'd tell us was to call 911 immediately if he had a seizure, and to not leave him alone. His internist (who I like) seconeded that and said he was doing "really well, considering I wasn't sure he'd have brain activity after what he went through." (not just the seizures, but some of the blood levels and such he was getting afterwards) We have an appt with Dr. Ebersole at the U of C epilepsy center in 16 days and hopefully he can order mroe and better tests and give us better info.
The seizures (partial) had been going on for a while (at least months) -- we just didn't recognize them as such. In fact, my husband is now wondering if he didn't have petit mal as a kid -- teachers kept accusing him of "zoning out". Could just be a kid zoning out, but could be petit mal too. Who knows. Anyway, he had several complex partial that night before it generalized, then was basically going back and forth between complex partials and generalized (despite pumping meds in him) until they paralyzed him to intubate him. Once the pararlysis wore off he had several more grand mals over the next 12 hours. They never got an EEG because he couldn't be still. 3 days later they got one and it was clean. MRI was clean.
The good news is that he's responding to Lamictal really well. No side effects, so far. He had always been what I described as a "violent sleeper" with MUCH thrashing and sleep wallking (it was very bad for a week before his big episode -- who knows, those instances could have been seizure related too) often sending me into the guest bedroom but has slept calmly since being on the Lamictal.
This is a great site, thank you all for sharing your information. Thank you Julie for the great work on the website -- those articles from the SEE program were really helpful.
Vicki
G. - 10 Apr 2006 15:59 GMT I don't know if that's available where you are, but several people around here over last 2-3 years, had a Sleep Deprived EEG, where they wear a portable monitor, and spend 1-3 days in Hospital without sleep, in hopes the weakening of the body will help trigger seizures where they can locate the area (one poster had about 3 !) where the szrs. start from. Usually the newer meds. are more targeted so if they can locate the site where it starts, a different pill might be used than if it happened elsewhere. Hopefully if some of them are still reading here, they might comment for us whether that sort of test might be useful and if there is any minimum or maximum age of the patient where it could be used. (I *think one of the posters then had been sedated, but in such a way to keep them still, but that didn't interfere with the waves they wanted to find to tell where it was coming from. ) Let us know if you find anything else or new that helped, as you're not the only ones who are having this sort of problem. But it can seem that way if the Drs. appear to be stumped by what they're looking for. G./
> Our neuro has run away screaming :) The tests (ct and MRI) were normal > and so she can't tell us anything. She literally had a look of a deer [quoted text clipped - 31 lines] > > Vicki paul.chiasson@ns.sympatico.ca - 10 Apr 2006 17:47 GMT EEG's often are "clean". They aren't fullproof as an indicator of seizure activity. Mine normally show "normal" activity; the last one to indicate something strange was in my Tweens (11 - 13 yrs), and that only because my last seizure had been a year or so before. Ever since, they read "normal", so be sure to ask your doctor if they double-checked any test results, if only for your piece of mind.
My seizures stopped when I was about 10 - 11 yrs; I was weaned from the meds at about 16 yrs, then about 9 yrs ago, at 36 - 37, I had a Grand Mal out of nowhere. During the night, my wife, who is profoundly disabled with a non-verbal quad cerebral palsy, scared shi--ess. When in the last few posts I mentioned eating carpet fibres, I was speaking literally, try pulling yourself toward the phone on the bureau (the nightstand was too small) to call someone. Subsequent testing showed almost nothing but the leavings of congenital brain damage, and the only reason I was given the benefit of the doubt is because my wife saw almost everything.
So, when the doctors and technicians talk about "negative" or no results worth detailing, ask why that is, what are they. If you have to, familiarize yourself with how to interpret test results; you may not be qualified to judge definitively, at least you'll understand the squiggles and indicators a bit better and be about to ask the right questions. Grill them and push them to explain what they mean so you can understand it without all the doctorese. It doesn't mean you don't trust them, simply that everything is familiar and interpretable to you. Doctor's have an obligation to tell you everything as plainly as you see fit. That's not to say you shouldn't trust their judgement, but because some things seem too technical they simply don't bring them up--specialists especially. In the end, if there is no obvious answer, then push to be advised of "why" this or that treatment might work, and why it's worth having your kid sick and puking their guts out just to stop the seizures--there are always alternatives, look for them.
 Signature
=========================================== Paul J. Chiasson http://www3.ns.sympatico.ca/paul.chiasson/ paul.chiasson@ns.sympatico.ca vsmon@ns.sympatico.ca ai714@chebucto.ns.ca ==========================================
> Our neuro has run away screaming :) The tests (ct and MRI) > were normal [quoted text clipped - 55 lines] > > Vicki G. - 11 Apr 2006 00:22 GMT You could also ask them if a Homemade Occlusal Splint might work for his type of szrs. My dentist said for Kids, their Jaws and Teeth are changing too quick for the Dental type (and costs of refitting each ~9 months to give secure fit during the night). My Dentist said a Kid's version can be bought at Sports Stores that sell Soccer or Hockey mouthguards for Kids to Adults. These fit over *both Top and Bottom teeth and are ~clear soft plastic. The ones I have wear through or change to cloudy when they get olde. Mine never have, and only about the First one wore through after ~18 months. My Dentist said to cut it in half **Horizontally, as only Top Teeth need covering, to protect against Tongue / Tooth damage, if he has Nocturnal szrs. without waking up fully.
Those should be about $12-25. ? Canadian for the double type that would fit over both Top and Bottom teeth at same time --> so you have 2, until he outgrows them. Clean it each AM with Warm water, dry it, and save somewhere dry (near to bed so he remembers to use it). These *may come with a Plastic snap-shut case, where it can be stored by the bed, or if he goes to sleep-overs and is still having any szrs. Otherwise they should be available for under $8. or so. Some people posted before that *Walmart have lower Dispensing fees (about 25? percent of total pill cost) if you pay for your own pills. Make sure (I would anyway) that the Dr. writes No Substitutions on the Script so they don't give him a Generic Pill (cheaper to insurer), **unless your Doctor thinks your Area uses only New Pills and Stock. It might look like 20-25 dollars a refill (100 days or so), but what's the value of them having a good night's sleep or not missing school? And it's Only another 1.5 months until School is off, if they think he can wait until then to get Used to the Splint or Generic Mouthguard at nights. That way it doesn't interrupt his Year End projects, tests etc... :-<
It only takes ~2-3 nights and then he should sleep through the night, and enjoy the Better Sleep that results. Once he's about 12-15+ you could look into the Adult version, if you have a Dental Plan, or even if you don't. Once his jaw is Adult size, the ones I use (now that I'm *controlled), seem to last about 2-3+ years each. Largest part of cost is Fitting+ Lab Fees ( impressions of the teeth-- *no needles or anything Gross! ) to produce a Splint (one) -- I think the last one I had made (with lab fees and 1* implant, was ~$2-300 Canadian. New Splints can be made (from above impression they give you to keep) 1-2x at about $40 or so, before he needs a Refit, if his Jaw and Mouth are still growing. (My Dental Plan pays ~75% of Gross Cost, so long as Lab Fees are below 60% ? of Totat Submitted Cost --my Dentist can send Electronic Estimate direct to my Dental Plan, to see *what /*if they'd pay for some or **all of the amount submitted. The first time, my Plan lost the estimate, and by time they came back with above reply, I had already told my Dentist to go ahead and make one for me.)
Even though my last Complex Partial szr. was June 1998, I still take the same Pill rate-- (Tegretol CR + Frisium for mine-- the former is usually used more for *Adults as **some people can have Calcium loss with Tegretol, and its effect on Growing Bones would show up *First in my Teeth he said). My Dentist changed my checkup rate from each 6 months to each *4, for about 2 years, as we confirmed I didn't have any noticable problems. I didn't. It *sure paid for itself, as we got to proper Pill levels and Full Control
IF by chance he was already using Tegretol (*any of them), Grapefruit Juice, or some Cough Medicines that contain Alcohol as a Carrier, can mess with the blood levels of that one (and *any of the Carbamazepines? ). In that case if (when) he gets a Cold, show any cough medicines to the *same Pharmacist who fills the Prescriptions so they can check the Scripts for you, and confirm it's Safe for his use. It only takes them a minute or 2 and Sure saves surprise szrs. 30 hours later, with no apparent cause. Keep us Posted how he makes out, if you have time. Lots of people Read us here, while they might (still) be too shy to Post, and you can help Others who recognize Similar Childhood Onset things, that will get them to ask Their Doctors about this too.
I've *never had a Pharmacist say 'here he comes again... ' . They've **always been Excellent for me. The last thing They need is to have a Doctor find out that *This Drugstore* swaps to a Generic med. or changes something he's Written on the Scripts without speaking to them. Then he'll just say "Don't fill this at XYZ Shopper's Drugmart, fill it Only at Boots or YYY, near to where you live, please... " //G.
> EEG's often are "clean". They aren't fullproof as an indicator > of seizure activity. Mine normally show "normal" activity; the [quoted text clipped - 38 lines] > http://www3.ns.sympatico.ca/xxxxxpaul.chiasson/ > paul.chiasson@ns.xxxxxsympatico.ca *G. *I put xxx's to munge the address he posted on prev. message/ keep trolls away?
> ========================================== > <vburke@gmailxxxxx.com> wrote in message G.******** DITTO to above note./ [quoted text clipped - 55 lines] > > from the SEE program were really helpful. > > Vicki Julie - 10 Apr 2006 21:20 GMT > The good news is that he's responding to Lamictal really well. No side > effects, so far. He had always been what I described as a "violent [quoted text clipped - 8 lines] > > Vicki Hi Vicki, glad our website was helpful to you.
I imagine you have a long list of notes from your husbands experiences as a child and now to share with the epilepsy center. One thought I have is that if your husband is not sleeping well that could add to his problems, stress and fatigue can trigger seizures.
Take care, Julie, volunteer Webmaster Epilepsy Foundation of Idaho http://www.epilepsyidaho.org
Sofia - 13 Apr 2006 00:32 GMT > I imagine you have a long list of notes from your husbands experiences > as a child and now to share with the epilepsy center. One thought I > have is that if your husband is not sleeping well that could add to his > problems, stress and fatigue can trigger seizures. Funny you mention stress, as I don't get aura's either, so it's always my husband that has to notice when I'm about to have a seizure nowadays too. He says I shrivel up tightly like I'm in my mother's womb if asleep, hold on tightly to a tea-cup while he spends ages trying to take the darn thing out of my fingers, and if I'm standing, I don't flop down, instead he says I stiffen-up and go "TIMBER" like a tree falling.
I think it's probably because our loved ones are near us all the time, that they're the ones that will probably notice any little movements, and changes that we make as time goes by.
All the best
Sofie
 Signature Please visit my deviantART page: http://sofen.deviantart.com/
|
|
|