Medical Forum / Diseases and Disorders / Epilepsy / July 2005
simple partial seizures related to heart?
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BillX - 02 Jul 2005 22:07 GMT I read an article that claims 20-40% of uncontrollable cases of simple partial seizures may be related to undiagnosed heart conditions. Anyone on this group had experience with heart conditions related to simple partial seizures?
Dave ©¿©¬ - 02 Jul 2005 22:19 GMT Howdy!
Sounds a bit far fetched to me!
If you are talking about cause and effect I would think that, IF ANYTHING, the epilepsy might be the primary condition causing heart problems rather than the other way around!
 Signature Dave ©¿©¬
http://www.howdydave.com
> I read an article that claims 20-40% of uncontrollable cases of simple > partial seizures may be related to undiagnosed heart conditions. > Anyone on this group had experience with heart conditions related to > simple partial seizures? Mary Fisher - 02 Jul 2005 22:23 GMT > Howdy! > [quoted text clipped - 3 lines] > the epilepsy might be the primary condition causing heart problems rather > than the other way around! I was thinking that too. There are also too many articles written by people who have misunderstood or elaborated on dodgy research. In ALL fields.
Mary
BillX - 03 Jul 2005 13:23 GMT Seizures can be triggered by inadequate blood flow to portions of the brain. The heart plays a role in the deliverly of blood to the brain. That failures of the heart could lead to a seizure doesn't seem a far stretch to me. As far as misunderstanding, the prescription of AEDs is educated guess work at best. The mechanism through which half the newer drugs work is yet to be understood, only that certain percentages of people with varying forms of epilepsy seem to respond. Guess that's why doctors "practice" rather than "perfect" medicine ;-)
Mary Fisher - 03 Jul 2005 14:21 GMT > Seizures can be triggered by inadequate blood flow to portions of the > brain. The heart plays a role in the deliverly of blood to the brain. [quoted text clipped - 4 lines] > of people with varying forms of epilepsy seem to respond. Guess that's > why doctors "practice" rather than "perfect" medicine ;-) Not in UK.
They practise :-)
Mary
G.Ross - 03 Jul 2005 14:53 GMT > Seizures can be triggered by inadequate blood flow to portions of the > brain. The heart plays a role in the deliverly of blood to the brain. > That failures of the heart could lead to a seizure doesn't seem a far > stretch to me. **** You started with this --> I read an article that claims 20-40% of uncontrollable cases of simple ****************************** partial seizures may be related to undiagnosed heart conditions. Anyone on this group had experience with heart conditions related to simple partial seizures? *** That premise, Mary and Dave disagreed with. Mine were caused by damage to Rt. Temporal Lobe from Encephalitis (a viral illness, not related to bloodflow). That's 3, since my S.Partial seizures preceded the Complex Partial (temporal lobe) ones I had, that are now controlled with the 'dodgy' medications, referred to below. That control from onset (1993) to control (1995) took 2 years. I had one szr. in Dec. 1997, then none since then. Still taking the 'dodgy medications' though, but the statistics offered earlier don't hold up, so far in our sample. We need a **Bunch of heart conditions soon, if we're going to hit that 20-40% heart-caused seizures, with or without the 'dodgy medications'.
You were diagnosed less than 18 months ago? Or they're not sure what triggered the onset of whichever S.P. seizures you were having? There were many people around here who had SP seizures either since birth, or with 'unknown cause' later in life. They may not all read the group on weekends, or ones that have either a Canada or U.S. Holiday within them. We'll see. But in many cases some distinctive EEG waves or internal damage (with CT scans or MRIs -- Magnetic Resonance Image) might show possible causes, if there was internal Brain Damage that would explain their type of szrs. Some here, though, may not find a cause with current diagnostics.
I don't think that makes them 'dodgy', by definition. I can't find the nearest Black Hole to Earth, but that doesn't make the science I might be using 'Dodgy... Perhaps the one just beyond Alpha Centauri puts out a different 'Gravity signature' than the ones we've found further away so far... /
As far as misunderstanding, the prescription of AEDs is
> educated guess work at best. ***** Which studies did that come from? A large percent of people diagnosed with EEG or MRIs are able to get full or better control with the 'dodgy meds'. Granted some may not, but it's because each case might be caused by different locations where the szrs. happen or the causes. If that large a percent were related to heart problems, EKGs (Electrocardiograms) would have found that relationship 40+ years ago? 'They' might be around, but since 1997 I've never seen a Single poster 'here' who had Heart Caused seizures. Out of 80-100 x 8 = 640-800 people, wouldn't we have encountered 'some' by now? Certainly if '20-40%' (paste at top) had, we should have had 1/3 of posters (33%) there? No? /
The mechanism ***through which half the
> newer drugs work is yet to be understood***, only that certain percentages > of people with varying forms of epilepsy seem to respond. Guess that's > why doctors "practice" rather than "perfect" medicine ;-) *** Very punny, but it doesn't verify a 'medical statistics' posit. Where does the 'through which half the newer drugs work is *yet* to be understood' come from? Articles? References? If you *gave me a Placebo, and it controlled the type of Complex Partial seizures I was having 1993-5 and it *worked, that's a Cure for me. You can call it Chocolate or Smarties or anything, but if it Works, that's enough for me to use it. It Works. What more do I need? G./
BillX - 04 Jul 2005 10:28 GMT Hi G. Glad your AED are controlling your seizures. Mine for the most part are too except for the Simple Partial variety that still plague me about once per day.
My interest in the heart article is because my SPS seem to be related to how often I run. I believe the author's speculation that "20-40% of uncontrollable SPS may be related to underlying heart condition" takes great liberty with the word "related." Kind of like my saying "I may be related to Adam and Eve." I agree with Mary earlier who said it's more likely that epilepsy causes heart anomolies rather than the converse but as in all things are can be rare exceptions.
Regarding my comment on AEDs check out the brief article on Dilantin below and note the prase "thought to work" rather than "known to work." Source is: http://www.neurologychannel.com/epilepsy/medications.shtml. This is where I'm coming from in saying the science is still experimental.
"Phenytoin (Dilantin®) This is one of the more commonly used agents and often is considered the first-line drug to treat partial and generalized tonic-clonic (grand mal) seizures and status epilepticus.
Phenytoin is thought to work by suppressing electrical activity in brain nerve cells."
Mary Fisher - 04 Jul 2005 11:39 GMT Phenytoin is thought to work by suppressing electrical activity in brain nerve cells."
It turned me into a zombie.
I came off it by the way :-)
Mary
BillX - 04 Jul 2005 21:06 GMT I felt foggy the first couple months on Dilantin but eventually adjusted. My complaints are the need for constant blood monitoring to keep in theraputic range and its interaction with calcium requiring scheduling around meals.
Keppra had its share of problems in the beginning. I'd get aggressive and really anxious close to dosage time like a junky waiting for next fix. Over a period of months the anxiety went away and I found the Keppra made me better able to concentrate offsetting some of the Dilantin's dulling effect. The best thing that can be said for Keppra is it can be taken with anything unlike Dilantin. The down side for those paying out of pocket is Keppra is a "new" drug hence around 4 times the cost of Dilantin.
Mary Fisher - 04 Jul 2005 21:21 GMT >I felt foggy the first couple months on Dilantin but eventually > adjusted. My complaints are the need for constant blood monitoring to [quoted text clipped - 9 lines] > those paying out of pocket is Keppra is a "new" drug hence around 4 > times the cost of Dilantin. Live long enough and it will becomecheap :-)
Mary
turbinado - 10 Jul 2005 01:32 GMT When I first got epilepsy 18 years ago, they put me on Dilantin. It made me feel like I had a bag over my head. I was only on it for about 3 months.
> Phenytoin is thought to work by suppressing electrical activity in > brain nerve cells." [quoted text clipped - 4 lines] > > Mary G.Ross - 04 Jul 2005 16:16 GMT Hi G. Glad your AED are controlling your seizures. Mine for the most part are too except for the Simple Partial variety that still plague me about once per day.
My interest in the heart article is because my SPS seem to be related to how often I run. I believe the author's speculation that "20-40% of **************** uncontrollable SPS may be related to underlying heart condition" takes great liberty with the word "related." Kind of like my saying "I may be related to Adam and Eve." I agree with Mary earlier who said it's more likely that epilepsy causes heart anomolies rather than the converse but as in all things are can be rare exceptions.
Regarding my comment on AEDs check out the brief article on Dilantin below and note the prase "thought to work" rather than "known to work." Source is: http://www.neurologychannel.com/epilepsy/medications.shtml. This is where I'm coming from in saying the science is still experimental.
"Phenytoin (Dilantin®) This is one of the more commonly used agents and often is considered the first-line drug to treat partial and generalized tonic-clonic (grand mal) seizures and status epilepticus.
Phenytoin is thought to work by suppressing electrical activity in brain nerve cells."
G.- I was only able to use Dilantin (Phenytoin) for about 4-6 weeks and it gave erratic control so we moved on to Tegretol (Carbamazepine) Controlled Release, mentioned in same article. My Dr. told me that Dilantin had been used since 1930s, and for those who it *will work for, it gives stable *cheap control since the research costs have been recovered more than 60 years ago. Being longer studied, it also has more printed literature. (*** Before I forget -- does your Doctor know you Run and how many times a week? at **s above? The higher Heart rate during that exercise will tend to flush some medications more quickly from your system than if you weren't exercising as vigorously? They might have set your dose level based on age, weight and 'sedate' lifestyle, and not taken into account that you might be 'running off' some of the capacity from your bloodstream? Just a hought. )
There are more than one article written on Dilantin. U.S. Ep. foundation have a glossary too http://efa.org . Picking up one word like earlier (thought to work) and questioning whether it works since the writer (who may be a career writer and not have *any pharmaceutical *or medical experience), may result in throwing out pills that might work or be cheaper in the long run.
I had the mood swings that article describes, and had decided that *no anti-ep medications were ever going to control the seizures I had, and which I got randomly each 1-5 weeks while I was using Dilantin. When I went over to Tegretol for my type of Temporal Lobe szrs., the rate went from each 1-2 weeks to each ~6 weeks to 10-12 weeks, to 4-5 months etc. down to periods of years (with a second med. and reduced Tegretol). Last szrs. (I listed) were Dec.97 and June 98.
Some of the medications can also be affected by other parts of our diet. Grapefruit Juice, for example, messes up blood levels of Tegretol, but that's only listed on *some of the glossaries. (My pharmacist told me about it *after I had found a reference online -- some of the 'random' late day seizures may have been caused on days I used G.fruit juice with the Morning Dose, but since I didn't use it consistently, my szrs. as I got near control appeared more 'random'... Alcohol and some upset stomach remedies also interfere with Tegretol and other anti ep medications. (One of the acids that's in grapefruit that's *not in other citrus juices is what interferes with above pills. So a juice mix that 'may' contain grapefruit, can produce symptoms that we wouldn't expect to come from a juice blend, taken 12-15 hours before. )
*Some of the simple partials can be produced by an aroma we react to, change in barometric pressure, or other things in our environment, depending on what our triggers are.
**One thing I *did notice reading the Full article you posted-> Did you notice that the *writer doesn't appear to know how *many of the drugs they list work? Not just the one you list, but more than 50% of the Total registry, they have included a disclaimer that 'the method this pill works is not understood, but it's used to treat xxx....' ?? That's either Incredible accuracy I've never seen on any *Other glossary or printout I've received from my Pharmacy on pills I've used on that list, or they're Really really being careful to not commit Too much to a pill that might produce side effects they're not aware of, where a disclaimer-> "this information is of a general nature and should not be taken as serious medical advice, contact your Doctor or Neurologist for precise information etc.etc. etc. " would have been sufficient. You probably know, but any of the entries (although I'd use the efa.org glossary now), where it refers to using a pill as Adjunct therapy, that means (like my Frisium) that it is designed to be used in combination with at least *one other anti-ep medication. I don't know how that would apply to 'only' simple partial seizures. Since many of those might be treated as similar to auras?, they might often be first prescribed a Single anti-ep medication as treatment. I don't have any personal experience with when more than one pill might be used to treat a *simple partial szr. Since mine were Complex Partial (formerly Temporal Lobe) they were targeting those first, and the only S.P. seizures I had were near the 'end time' as we got within the last 10% of full control. It was only then too that I recognized the Lemon taste or Aroma and dizzy swirling feeling and Deja Vu as part of the aura of my particular seizure type. Only then was I able to track how many S.P. seizures I was still having as we got near to more control.
(If you're on another med. than Dilantin, is there a Timed Release version available? There isn't for the former, but e.g Tegretol and others have 'controlled versions', so blood levels remain more stable even if you take 'each 12 hour dose' plus or minus ~3 hours from when it's due. ) G./
BillX - 04 Jul 2005 21:53 GMT I suffered my first seizure (grand mal) two years ago at the end of an intense 6 mile run. Attack presented as a stroke that progressed into a grand mal in the ER. I remember the frustration of not being able to move or talk but seeing and hearing people reasonably clear. Then the tremors started in the ER and my only thought before passing out was I was going to die. MRI showed a 6.4x4x4cm lesion in the left temporal lobe that was initially diagnosed as stroke but later re-evaluated as a low grade glioma. I've been having an MRI every six months and lesion size has remained static reinforcing the glioma diagnosis.
Becoming dependent on AEDs and needing to take them every 12 hours (or else) came as a real blow after being healthy most of my life. It's difficult taking drugs with so many known toxic side effects daily other than knowing that without them I most likely would die.
I'm not a total stranger to epilepsy. I had a ten year run as a child that resolved itself around age 19. I called it the "crazy walks" because the muscles in my arms, legs, and to a lesser degree face would suddenly start contracting on there own so I would move like someone with muscular dystrophy. The attacks were always triggered by sudden physical activity such as standing and never lasted more than one minute without loss of conciousness. I found that by holding still after onset that attacks were briefer and less severe so observers misinterpreted them as absense seizures and prescribed phenobarbital that I took for around 7 years.
Mary Fisher - 04 Jul 2005 22:05 GMT > Becoming dependent on AEDs and needing to take them every 12 hours (or > else) came as a real blow after being healthy most of my life. Look, Bill, I'm not trivialising your condition at all and I know from my own experience (not just with epilepsy) that some conditions bring us up short.
But we all know that something's going to get us, in the meantime we have to make the most of what we have, enjoy it and concentrate on the good parts, not the bad ones. They'll look after themselves.
Life is good, even when it's not so good it's better than the alternative.
> It's > difficult taking drugs with so many known toxic side effects daily > other than knowing that without them I most likely would die. Yes, very many of us have to do that. I have cancer and while I don't take medications at the moment (for that) I've had my share. I still maintain that it's better than the grave, that will come soon enough.
I take several medications for pain of arthritis and for other conditions, the side effects aren't pleasant and they don't give me 100% relief.. I do, however, have enough relief to live an apparently normal life. What more could I want? What more could you want? Some people haven't ever been able to run ... you've been privileged.
I might be doing you an injustice but please don't dwell on the bad parts, instead think of the benefit you're having from current medical knowledge. In the future it will be even better. In the past ... :-(
Hugs,
Mary
G.Ross - 04 Jul 2005 23:30 GMT >> Becoming dependent on AEDs and needing to take them every 12 hours (or >> else) came as a real blow after being healthy most of my life. [quoted text clipped - 17 lines] > Hugs, > Mary Hey! Not all of us get Hugs from Mary around here ya know... Ask Dave.
But I just went back and read an earlier post you did where you described the size of a growth that showed up after you collapsed while jogging? If you hadn't been jogging or caused them to do those tests, that might have still been progressing and become worse still... That collapse might have been a 'lucky break', with respect to getting treatment for something you might not have been aware of.
Are any of the pills or treatments they're doing targeting trying to reduce that growth as well as treat your seizures? If that's something they can treat from 'outside' by medicines, that could be the cause of some of the szr. effects you were feeling? You're still going to need to take some pills while they treat that, and *possibly once they get those szrs. under control. But that might be something that has a Finite treatment time, as opposed to some of us who will take these pills as prescribed indefinitely. Each of our szr. types can have some similarities, so we can give opinions what worked or didn't for us, but many are also unique to each of us and while some of us might be taking pills indefinitely, you could conceivably reach a point where your's are controlled and if the causes decrease, then you wouldn't need to keep taking the pills indefinitely. It would depend on your particular prognosis and if this is something the Doctor expects they can treat, or if it's something that is permanent.
A woman who used to post here had seizures since birth. She described her's as a 'sibling she had to take with her to parties, concerts, and meetings, whether she wanted to or not'. It was just something she had learned was part of her 'new normal' and once she was able to do that, the other stuff stopped bothering her. That might have been unique to her. Maybe not. That's why we're around here. G./
BillX - 05 Jul 2005 19:10 GMT Thanks for the hugs Mary. Based on G's comment I should be greatful for that<g>.
Yes, I realize many others have it far worse and try to remind myself when I get in a pity mood. Thought I might get leneancy one time for airing my dirty laundry in this group.
In answer to G's question I've not had any treatment (including biopsy) for what is believed to be a tumor. My meds are strictly to control seizures. There is currently no non-surgical treatment for low grade glioma other than radiation. Several clinical trials have experimented with chemotherapy and met with minimal success. The neurosurgeons I've consulted are in agreement that surgical intervention is not possible given the size and location of my tumor so I'm waiting this thing out until it shows its cards. Hopefully when I see them it'll turn out to be a bluff :-)
Mary Fisher - 05 Jul 2005 19:54 GMT > Thanks for the hugs Mary. Based on G's comment I should be greatful > for that<g>. Well, he's wrong. I'm VERY free with my hugs. I associate with people I like to hug :-)
> Yes, I realize many others have it far worse and try to remind myself > when I get in a pity mood. Thought I might get leneancy one time for > airing my dirty laundry in this group. Anyone can vent here, we all do at one time or another.
> In answer to G's question I've not had any treatment (including biopsy) > for what is believed to be a tumor. My meds are strictly to control [quoted text clipped - 5 lines] > until it shows its cards. Hopefully when I see them it'll turn out to > be a bluff :-) LOL!
A fellow cardsharp!
Mary
Julie - 03 Jul 2005 22:43 GMT Hi Bill, as soon as I read your post I knew exactly what you were talking about from first hand experience with my mother. I have epilepsy - my mother did not have epilepsy (past tense because she died last year). Here is the story.
A couple years ago my mother was brought to the emergency room because she was having problems. I'm thinking this time it was either irregular heart beat or she was feeling very week and couldn't even stand up. My sister called me to be with her in the ER while the doctor and nurses tried to figure out what was wrong.
I was sitting there talking to her while no one else was in the room. All of a sudden she did what looked like a seizure to me. She stopped talking, her jaw stiffened out - and warped to the side, her arms went up and she stiffened out. This only lasted a few seconds. When she came out of this event she was back to normal and didn't seem overly tired. I told the nurses and doctors what I saw, but they had no explanation at the time. She was hooked up to a heart monitor, but they did not notice that it was her heart. This happened a couple other times and each time I was the only one in the room with her.
I know that before I have a seizure I start to feel strange. So I asked her if she had a strange feeling before this happened. She said yes and that she was starting to feel strange now. So I jumped up and called for the doctor. The doctor came in and saw her start to have this attack (what appeared to be a seizure). The doctor told me to get nurses and when I returned the doctor was giving my mother CPR.
Then they looked closer at the monitor and saw that it was indicating that my mother's heart was stopping and starting. That is why she had what appeared to be seizures. They ordered an external pacemaker and she had surgery the following day with a cardiologist for a pacemaker.
Take care, Julie
> I read an article that claims 20-40% of uncontrollable cases of simple > partial seizures may be related to undiagnosed heart conditions. > Anyone on this group had experience with heart conditions related to > simple partial seizures?
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