Does anyone else have spouse with dementia caused by Seizures/Epilepsy? About 8 years ago my husband (57 years old now) started having these episodes where he kind of stared into space, could answer questions, however, really didn't want to. They were diagnosed as seizures. About 5 years ago his memory started failing, getting worse every year. He is now taking Lamictal & just recently started Depakote for seizures & Namenda & Razadyne ER for memory. He just saw the Neurologist today, he still believes his memory problems are not Alzheimer's, as of yet. Due to the fact that it has been 5 years since the memory problems started. As he said, my husband should be in much worse shape if it were Alzheimer's. I hope he is correct, however, he has at least 9 out of the 10 symptoms. Also, his maternal grandmother & mother both passed away from dementia, however, grandmother was around 75 & his mother 71. Thank you in advance for any replies to my post.
Alzheimer's patients can develop seizures, but studies apparently have not yet conclusively confirmed that seizures can lead to AD, although very recent studies IN MICE indicate there is a possibility that they do.
Another study concluded that APOE, a gene which is a risk factor for AD (that is, people who develop AD often have this gene, but not everyone with the gene will develop AD) increases the risk that a person will suffer seizures after suffering a traumatic brain injury. This indicates a relationship, but not necessarily a causative one.
Now, I'm wondering about what might have caused the type of seizures you describe. More than 30% of new-onset epilepsy cases in the elderly may be attributed to cerebrovascular disease, including ischemic and hemorrhagic strokes. (See: http://www.medscape.com/viewarticle/406734_2 )
Cerebrovascular disease can lead to vascular dementia. While vascular dementia cannot be "cured" per se, appropriate medications can, in some patients, help minimize further damage, and slow down the disorder significantly.
Remember that "late onset AD" is NOT inherited per se. Certain risk factors may be inherited, but not everyone with a gene that "predisposes" one to AD will actually develop it. Something else is required to trigger the onset.
Thank you for your reply. I did read the article you suggested. There really was no reason for the seizures, no strokes, no trauma. Just one evening it happened. At the time we thought it was because he worked 3rd shift & was just tired. However, when it became a daily experience he went to the doctor. After 5 MRI, PET Scan, CT Scan, Lumbar Puncture, EEG & numerous blood test, the Neurologist still don't really know why it all started. In my research in the past I had read where in later stages of Alzheimer's seizures can develop. Never really have found anything that relates seizures to dementia. I have read comments from boards relating to seizures, where they have some memory loss, however, really not to the extent that my husband suffers. Mostly, they attribute the memory loss to medication. Again, thank you. Kadee
Just one minor point -- a stroke isn't necessarily something dramatic. The seizure itself could have been the only evidence he'd had one.
My husband came into my office one day, complaining that he felt mildly dizzy (it was not interfering with his ability to walk), and that he felt as if he had to "push words out." His speech sounded fine to me. However, he asked if I thought he should see a doctor. Since he is SEVERELY allergic to doctors, the answer to that question is "yes" no matter what else he says about how he feels. I took him to Urgent Care, where I was chastised for not recognizing that he was having a stroke, and they hauled him to ER by ambulance. He was feeling fine by the time he got there.
Nothing showed up on the CT scan or MRI, or in the blood workup. They feel it was a TIA because the regions of the brain that control speech and movement are very close together, so a very small stroke could affect both. Apparently, there are "clusters" of symptoms that indicate stroke. Who knew? I got scolded at the ER all over again for taking him to Urgent Care first. Sigh. How many people would have taken their LO to the doctor at ALL with such benign symptoms? Most would wait to see if the LO began to feel better, and of course, the symptoms of TIAs resolve within a few hours, by definition.
Also, small strokes don't necessarily show up on MRIs or CT scans. Imaging techniques typically detect damage done to a "larger" region of the brain, e.g., by hemorrhagic stroke or tumor.
I can't begin to imagine how frustrated you must be, not to have a definitive diagnosis after all this testing.
All of that said, my husband -- who does have AD according to experts at the University ADRC -- went through a period where he had episodes of sitting and staring into space. He was vaguely aware this was going on, and would respond if I pestered him. He said time seemed to pass very quickly when he was like this. He hasn't complained about it recently, and I haven't noticed him doing this any more (not that that means much.)
Also, I'm not so sure I'd trust the opinion that your husband would be in a lot worse shape if it were AD (or vascular dementia.) You may have been tipped off to his problems by the seizures, and have been more aware of his problems earlier in the course of the disease than most people. And some AD patients can have five, or even ten, good years AFTER a diagnosis before their symptoms get really bad.
Many of us -- now that we know our LOs have AD -- can look back and recognize that they had symptoms years before the diagnosis.
Thank you again for replying to my post. The reason I keep questioning the Neurologist regarding Alzheimer's is because he has at least 9 of the 10 symptoms. He doesn't have a little memory loss, he has extreme memory loss. He does not remember how to write his name, his address, birthdate (he thinks he is 62, he is 57) phone number, SS#, basic math, comprehend directions, follow conversations or a T.V. show. He cannot make a decision, as simple as what to wear in mornings, cannot find the words or substitutes words, can no longer drive. After getting lost for 1 1/2 hrs. 5 miles from our home, last June was the last time he drove. Sometimes he gets morning & evening mixed up. Since both Grandmother & Mother suffered from dementia, I know what Alzheimer's is & what the final chapter is like. What all the Neurologist are saying normally Early-Onset Alzheimers( people under 65) decline much more rapidly. And since my husband has had memory problems for at least 5 years he would be in the final stages by now. Most days he is still able to tend to his daily routine. I so want it to be something other than Alzheimer's. Even though the man I married has been leaving for sometime now. Thanks again. Kadee
Kadee, find another doctor. The one you are currently going to is nuts.
If you can't go to another doctor because of insurance issues, ask for cognitive therapy. There is no way he can fool one of those therapists. My husband was basically diagnosed by a cognitive therapist. SHE was the one that kept insisting we needed to go to a neurologist. And unlike most of the LOs here my husband didn't have the kind of testing that you hear about. The neurologist had 6 months of reports from the therapist, a couple of years worth of testing from the cardiologist and just filled in with what hadn't already been done. He got some additional blood tests and a CAT scan (no MRI because he has a pacemaker).
You are describing my husband's symptoms and he is at least late Stage 5 and possibly early Stage 6.
"What all the Neurologist are saying normally Early-Onset Alzheimers( people under 65) decline much more rapidly."
Not true. From what I've read, there are two different types of early-onset. (Tony, feel free to tell me I'm nuts.) One mimics late-onset, it just starts at a younger age. These patients follow the late-onset "heaven only knows how long it will take" course of AD, and can decline very slowly, especially during the early stages.
The other is "familial early-onset", eFAD, which is the type that is inherited. eFAD patients TEND to decline more rapidly.
To try to diagnose someone on the basis of how rapidly the disease is progressing is, as Starling says, "nuts". Not to mention, I'd agree that your husband is Stage 5/6. My husband is squarely Stage 5, hints of Stage 6 from time to time, and he's not nearly as bad as your husband.
The list of "warning signs" is designed to cover the scoreboard -- it includes symptoms you'd observe with FTD, VaD, etc. It does NOT describe "early stage" AD. Any one of the symptoms on the list is a warning sign. Few, if any, AD patients develop all the symptoms during the early stages.
Find a neurologist who specializes in AD and other types of cognitive disorders.
My husband had one seizure during cancer treatment. I think I can honestly say that was the scariest moment in my life. His eyes rolled up into the back of his head & he shook. He cracked the toilet lid in half from having fallen on it. We spent the night in the ER. My husband is 55. Amazingly, no one did any work ups for a concussion or anything else.
Actually, this is the 4th Neurologist my husband has seen, all specializing in Alzheimer's. All are in agreement that the seizures are what has caused the dementia at this time. If they could get the seizures under control, his memory would stabilize, never return, but not decline . When his seizures first began, he was having sometimes 18 in a 24 hour period. I might add these are mostly absence type seizures. He could have been having more without the normal symptoms, blank staring. The PET scan did show that he could possibly have Alzheimer's later, however, was not consistent with Alzheimer's at that time. He is being treated, as if he has Alzheimer's with Namenda & Razadyne ER. I guess I can't wrap my brain around that this could be just seizure related.
My husband had a seizure back in January, but it was the grand mal variety, and the doctors believe it was caused either by the Alzheimers itself, or an investigational drug he was on as part of a research study. He had the seizure six days after an infusion of the drug. He was not put on any anti-seizure medication, and no one knows if he will have more seizures.It was truly frightening in and of itself, but he came out of it combative and left the house via aid car in restraints. They released him the next day, indicating he may be experiencing hospital-induced psychosis. The next couple of weeks were a nightmare! He was aggressive, combative, and his symptoms had increased 10 fold. Gradually, he returned to more like he had been. These months later, I see a more rapid decline in his abilities since then. I would say the seizure definitely made his dementia worse.
There are a couple of members here i think Fgirl? that both our husbands are experiencing a sort of brain spasming that is definately stemming from the AD. its not classified as a 'seizure' as such but looks alot like a small one or a TIA. i also thought meds were inducing this so took him off everyone that had to do with the brain etc..namenda/razadyne, etc. the spasms continue but never know what morning they will happen. usually in am after getting up after sleep. its very wierd to watch as well and his eyes tear so i worry it may be painful or give a headache. my SIL witnessed them last sunday and said they look like maybe a tiny minstroke too but dr says no meds unless they progress.. another person told me their AD husband had something like this that progressed to granmal type. i am xxx fingers that not the case. in any case i firmly believe AD/seizure relationship can be related. divvi
divvi, are you talking about myoclonic jerks? I haven't seen those yet, but I've read lots of posts about ADLOs who have them. They sound dreadful.
It is not uncommon for AD patients to develop seizures. The original question was whether seizures (or whatever causes THEM) can cause AD. I'm not all that sure people have actually been studying that question very much. It was really hard to find anything about that, in the midst of all the papers on AD transitioning to a stage with seizures.
Thank you to everyone who has replied to my post, I do appreciate every one's comments. My husband has Myoclonic jerks, his are due to seizures. Just recently, he bit his tongue during one of these jerks so bad it bled. These mostly occur when he is going to sleep, napping or watching T.V. Seems like these jerks & ice pick headaches are replacing the seizures. I am sure if the seizures had not started before the dementia, the Neurologist would agree it was Alzheimer's. There is diffently something familial with his grandmother, mother & now him. Although, neither had seizures. Again, thank you. Kadee
yes, that is the diagnosis from the ER dr then the neuro later. myclonic jerks. it is dreadful. he looks so scared and then just seems to be exhausted. they come in series sometimes a few are stronger than others. he also has them in reference to 'sleep' mode. i havent seen any during the day so far. just at getting up in the am. i feel so helpless and its nervewracking. My DH diagnosis is also Vascular Dementia/and/or Alz. he showed a couple of stroke scaring on the tests when first given. like others say the end result is the same, a disease that any way you get it its terminal. its scary to him and worse on me to witness this but from i am seeing is this isnt all that uncommon in association with this disorder. i know he didnt have seizures before the VAD diagnosis. this is something new since jan this yr.. seizures/spasms/myclonic jerks, whatever its called its horrifying. divvi
My DH has very frequent myoclonic jerks. They seem to happen without warning or reason---whether still or moving--sometimes singly and sometimes several in a row. He spills coffee or drops things because of them and also has them while resting. I haven't seen them happen when he is deeply sleeping. I also have seen him sort of "zone out" for a moment and I wonder if those are TIAs. His brother who also had AD did not have the jerking or the other physical problems that my DH has. His movements are much like those who are victims of a stroke. I was diagnosed about 3 years ago and developed them about 2 years ago. They almost seemed to confirm the diagnosis of AD according to the neurologist. The neurologist just says it is another symptom of AD.
FlGirl, is your DH on any med for the myclonic jerks? i read that Kadee's DH is on lamictal and depakote for antiseizure. when they became more noticieable in my husband and i took him to ER the neuro said unless they progressed we would hold off any meds. he still has these MJerks in the am for about 30min or so and we have a neuro appt today for 6mos checkup. was just wondering if you or anyone else who has experienced the MJ in your spouse are on any meds and if they are helping?? divvi i am soooo leary of any med now my dh doesnt tolerate things well with lots of sideeffects. i also just read that in jan/08 FDA issued warning that 11 antiseizure meds on the market DOUBLE suicide risks...scary stuff..divvi
My DH isn't on any meds for the myclonic jerks. I think the neurologist wants to hold off as long as possible. They are certainly noticeable and sometimes make him spill or drop things, but I hate to give him more meds. And sometimes it is just a trembling. We tried clonazapam for agitation and anxiety and the neurologist said they might help calm the jerking. But I didn't like it at all...he was comatose. Now I only tried it for 2 days and now know that I should have probably given it a longer trial. We're on Seroquel now and it seems to have helped the agitation some without making him so dopey. I can't seem to find any pattern to the jerking though--happens all times of day, whether doing something or sitting still...I've even noticed that his stomach muscles sometimes jerk...poor man!
mine doesnt have any aggression or any of that now -since i took him off namenda hes super calmed down. its the MJ that have me puzzled and worried it could become a full seizure thing..i think they have been /off/on for about a yr but i failed to put 2+2 when i saw it happen in the shower or sometime durng the day. now they seem to be mainly after awakening and for bout 40min in rapid successions. some smaller ones accompanied by stonger -his eyes tear with the stronger ones but he talks to me and it doesnt affect him with speech or what hes doing, and looks startled when they happen then goes on with what hes doing. i hate them. scares me silly. he also drops whatever when he has one too. i will discuss with neuro today again and update him, i have been logging them as they occur and definate am pattern here and ave 40min spans. other than that then he is fine and in good spirits the rest of the day. what a strange disease..me too, i really feel sooooo bad when he gets them. i feel he may have a headache after, hes pretty dazed sometimes..lets stay in touch. our observations may help someone else later. not sure dr know alot with all this either..thanks, divvi sad to say i feel somewhat better knowing our spouses arent alone in this one...its nasty. divvi
I'll try to log when I see them happening...maybe there is a pattern that I'm not seeing. I wonder about the Namenda producing the agitation...especially since I have never seen any improvement with any medications we have started. My DH also talks and continues what he's doing...haven't noticed his eyes tearing, but I will check. He sort of looks surprised and a little annoyed when they occur. We go to the neurologist next week; I'll ask more questions about it and see if there is any more info. I hadn't even thought about them become full blown seizures. It's strange because his brother also had AD, got it early too, but was very different. He never had the physical weakness, poor coordination and balance, or the jerks that my DH has. Does your DH have any physical problems like that?
No coordination issues at all and or movements. things are really pretty good except for the MJerks. i swear we (neuro) took him off the namenda thinking the MJ could be from taking this med so long. we were very surprised that the aggitation and anxiousness he used to have dissapated almost immediately. i was stunned and rather annoyed i had him on the namenda for so long without much results like you. but i did see a decline in verbal/writing skills after off the namenda but hes doing so much better in cooperating and eating and toileting and bathing!! almost no issues at all now.! whohoo...i was a strong advocate of the namenda but now i have to reconsider how long its of use in latter mid stages forward. i go to neuro in 30min and will drill him about the MJ and if he has any info. not a dr by any means but i figure its all the misfiring of the neurons and loss of braincells just one more thing thats hitting them at a fast rate. i just hope it doesnt turn into seizures or such. i have heard it can in late AD-til then we wil watch and observe. thanks for your input.. ttul. divvi
I am wondering if the myoclonic jerks & agitation that my husband experiences are due to the Namenda. And not seizure activity. He has been on Namenda for about 4 years now. Also, takes Razadyne ER since last summer. They Namenda doesn't help with writing/verbal skills, he still cannot write his name & has trouble finding the correct words.
It is a symptom that can develop in AD patients, as well as patients with multiple sclerosis, Parkinson's disease, Creutzfeldt-Jakob disease, and (commonly) epilepsy.
I did not find any indication it has been linked with namenda.
Interesting note: hiccups are a type of myoclonus twitch. Other familiar examples of myoclonus are the jerks or "sleep starts" that some people experience while drifting off to sleep. These simple forms of myoclonus occur in normal, healthy persons and cause no difficulties.
I am back from neuro appt. good and not so good news for us with myclonic jerking issues. first off i was chastised for reading every black box warning out there:) neuro says if you read everything assoc with meds youd never take an aspirin or tylenol either. its their job as dr to decide whether the side effects listed outway the good use in certain cases. first off he did indeed explain not uncommon for AD victims to develop seizures. the seizures themselves and myclonic jerks are a sort of misfiring of electrical impulses assoc with brain activity. myclonic jerks or myclonous as he referred to it, can progress in certain individuals. sooo-long story short, he said his synopsis of our particular situation is, '73yr old male, advanced dementia, consistent myclonous activity'...we should TRY to make his life easier for him at this point, if we dont rx something for the myclonous we will never know if it helps.' or i can chose not to try any med and statis quo. we dont know that he isnt in pain either when this happens but my guess is yes as he looks scared. so i humbly agreed to a 'baby dose' of neurontin 100mg to start tomorrow for min 3days and then call neuro and report how hes doing. i agreed if we dont try something to help him we wont know. plus dr says if there is an unwanted side effect after 3days we stop and go from there. in any event, if these myclonous can develop into a seizure activity then we will have to use something anyway at somepoint. i am not looking forward to using any new meds as DH case is less is better these days. but i am praying and xxxx fingers it works for him and he can have some peace again without the scary jerks. and Fgirl both he and the pharmacist says it takes a few days to let the body adjust to new med. its a small dose and we will see how it goes. wish us luck please..divvi
ps the myclonous persists even though we took him off namenda 6mos ago. so i doubt it was the namenda. but yes, anxiety and aggitation is extraordinarily improved off namenda, and hes back to toileting and eating bathing without issues...go figure..divvi
Divvi-I'm sorry things are not going well. I was on a small dose of neurontin for a short time and I felt like I was walking in a fog. I remember walking across the street in front of a car and couldn't make the connection to get out of the way. Those black box warnings are there for a reason.
thanks bluzdaze, i know =i am scared to give him anything but i told the dr we would see how it goes on a low dose for a few days. i want to TRY to see if it helps his jerking. its horrible for him and i fear it will only get worse. so i am obligated to test the waters in any case. if it works good if not we will discontinue..thats all any of us can do with reference to any new med and how the results will go? -plus the bad news is if there IS seizure-type activity assoc with AD -then the drugs out there all have risks..i am very nervous about it all. divvi
I imagine we can drive the doctors nuts fussing about possible side effects.
Yes, it is -- theoretically -- the doctor's role to weigh the issues and decide what to prescribe. And good doctors will do a good job of it. But I've had enough experience with mediocre doctors having no clue what the side effects might be, and prescribing drugs for me that are contraindicated for someone with my medical history, that I'm going to scrutinize every last prescription for my husband AND for me, and keep a weather eye out for side effects. (I'm one of the lucky people who had a serious reaction to Crestor, before the fact that Crestor can cause permanent damage became known. The doctor refused to believe the drug caused it. My new doctor still argues with me about my steadfast refusal to take Crestor, or any other statin. She's about to become my ex-doctor.)
Since my husbands dementia began after he started having Absence seizures, he has tried numerous seizure medications. Neurontin, was one he tried with a combination of another seizure medication, not only did it not stop the seizures, As another poster mentioned it caused him be more confused & sleep more. That is the bad thing about seizure medications, the side of effects always include confusion.
I am worn out today as i worried myself sick last nite, thinking i had ot give the neurontin this am. not only did i give the 100mg at 5am when he got up to bathroom he then wen tback to sleep and i didnt aftr beingup all nite...at 7am he had some jerking but not bad compard to yesterday and it lasted about 15min. instead of ave of 40min- its the lowest dose available. i will see how it goes. he is sleepier again after breakfast so it may make him drowsy..i am sure the dr will up the dose if the side effects arent too bad. both dr and rx said the body needs min of 3days to try to adjust to the new med and overcome the sleepy side.we will be viligilant as always. and yes, i may be humble now to the PHD neuro, but i still do my 'homework; and log everything daily to watch for side effects..plus we do know geriatric AND AD means the meds hit them harder..its trial and error at this point. i would be happy if the MJ didnt really stop but only were mild and of less duration at this point.....Fgirl, thanks for the input about your using neurontin too. the outcome may be the same for us too, divvi
on another note, almost everything we are giving our AD LO is black boxed these days, its pick and chose your battle so to speak. I see so many using seroquel and we had very bad issues with it, and DH became hyperglycemic and diebetic and very aggressive after the short time we used the drug. if you are using the drug make sure you ask about testing blood sugars- he was never diebetic before the usage. and then the sugars went back down a yr since we stopped it. plus in 2004 the FDA warned this drug had detremental side effects for the elderly and not recommended for dementia. so all in all, like i say pick and choose your battle which drug you want to meet 'head on'...ugh, i hate everything about all this! divvi