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Can ANYONE identify?

Tpenkhus
0 Recommendations

I have been a member now for a while. Mostly I have scaneed the topics and watched for situations that may be similar to that of my wife Ann. I have not come accross anything. So I'm going to put this out there. I will give a brief synopsis and I'm hoping for SOMEBODY who can identify and hear what treatments/consultations/information THEY have been given.

Annie came down with severe flulike symptoms - fatigue, BAD headaches, nausea etc. After 3 days, we went to our GP. We actually saw a Nurse Practitioner that day who thought it was PROBABLY Erlichiosos (sp?) from a tick bite which we could not confirm (the tick bite, we live in one of the hot beds for the entire country for tick population). We were given a course of antibiotics (not sure which) and sent home. She took them as perscribed but continued to get worse. That following Sunday morning she had her first seizure. Went to emergency room. She had more and began to experience a psychosis or, for lack of a better term, became "looney". Her seizure frequency increased to the degree that she had to be placed in a coma to protect her brain. For 3 months they continued to try to bring her out but had to put her back under because her brain wanted to continue. Finally they were able to bring her out. She was stabilized and we were perscribed quite a list of meds including 4 different anticonvulsants. Since then, we have SLOWLY "improved". It appears that most of the difficulties we have are medication side effects, however, we have had no luck in trying to lower her dosages. Each time we do we have more seizures. She will go for a month or two with no srizure activity and then for she will "push through" and we have to start all over again. This has been going on for two years. Has ANYONE experienced ANYTHING similar and what have you been told, taught, perscribed, learned, done, tried, etc.? I have been intentionally vague because I wish to see what other approaches were taken if anybody has experienced anything remotely similar to us. Sorry so long and thanks in advance.

Explore topics in this discussion:

Surgery Klonopin Kidney stones Anxiety Topamax Dilantin Tegretol Epilepsy Effexor Trileptal Stress Depakote Risperdal Ativan Coumadin Seizures Aphasia Memory Lyrica Encephalitis Speech therapy Lamictal Depression Keppra

18 replies

IngridGuerci

This hasn't been my problem but I do know of some members here who have these residuals. I think Mariann is one of them and I am sure she will contribute to this discussion.

Ingrid

MichelleN

I wasn't put in a coma I fell into one, but I do have times where I have more seizures than others. We found a medicine that helped, but finding what was stressing me helped if I could avoid that stress. I still have seizures, but not as often. I hope you can find more help than I can tell you.

Michelle

WendyStation

Hello Tpenkhus!

I believe that your wife had encephalitis in mid-2007, yes?

I had encephalitis in 1999, and after having one seizure in hospital, I was prescribed to take seizure medication (Dilantin) daily.
I did not strive to cease taking Dilantin until 2007... this was my idea, not the idea of my physician! I did have the approval and supervision of my physician. I believe it took 6 months of slow reduction in dosage, followed by 6 months of close monitoring (during which time I was not permitted to drive a car.)
I was very lucky that I'd had just one seizure in hospital, probably due to the crisis-mode that my body was in at the time.

Joey_sMom

I'm not sure what you feel would qualify as "remotely similar".

When my son was diagnosed with encephalitis (of unknown origin) five years ago, he was placed into a coma to stop seizures and treated with several types of antibiotics (he had not been experiencing flu like symptoms). The doctors could not bring him out of the coma when they tried. He did later awake on his own (he was in a coma for days not months). He experienced 38 seizures in 12 hours after awakening, but doctors did not feel it safe to place him back into a coma. He experienced some psychosis at that point (after the coma, not before it).

He routinely takes 4 seizure medications and one medicine for depression in divided doses each day. He also has a VNS implant to help control his seizures. He still experiences seizures each month (not every 2 or 3 months) but is greatly improved.

Is that close enough to your situation to warrant further discussion or do you feel our situations are very different?

Vicky
Caregiver

Tpenkhus

Vicky,

I'm glad you saw my posting. I would say that your son's situation certainly sounds similar "enough". Annie has a VNS. Her meds are Depakote ER, Topamax, Lamictal, and Phenobarbitol. She gets Risperdal for her psychosis and to controll what they deem "non-epileptic events", nightmares etc. We did the antibiotic thing for the time preceeding her coma. Whatever had gotten to her brain was (maybe still is) there. The diagnosis was E but I distinctly remember several MRIs and CTs revealing no remakable swelling. I don't believe the VNS is helping. We have had it for almost a year now. As a matter of fact we are experiencing severe repiratory issues right now which were not present before the VNS. We are going to the Mayo Clinic in Rochester this Tueday. I am looking forward to a total rexamination of her "encephalitis" and her overall physical wellbeing. We have excellent neuro resources with her current Neurologists at MN Epilepsy group, and they are anxious to see what Mayo comes up with as well. I didn't look to see where you are in the country but if you had access to either of these resources I highly recommend utilizing them. I am VERY frustrated with everybody's willingness to just accept where Ann's at and not do ANY more investigation or research or try new things or try to gather information on similar cases and do some analysis. Mayo is the biggest tool I have right now. Hopefully they will find her case and issues interesting enough to continue investigation into what went and what still may be going on. Are you still in the persuit of answers? Has anybody suggested what may have happened? Do you have good resources?

MaccaM72

7 years after West Nile, 5 day coma and many meds.

Is there a chance that any of her "psychosis/looney" episodes come after her seizures? I have those "episodes" after the small, brief seizures I get. They start as a feeling of a seizure coming on "aura's" then they pass but I act strangely (according to witnesses like moving my hands or picking at clothes. Hallucinations oral and visual occur and sometimes family doesn't know I have had a seizure until I say someting or act in a strange manner.

My Neuro says that they are from post-ictal activity when my brain is "re-wiring" itself. google postictal seizures and read up on them.

I started on low doses of meds but I quickly grew a tolerance to them and have now reached the point of taking 3000mgs of Keppra, 800 mgs of Lamictal and 1200 mgs of tegratol each day. I am now scheduled for brain surgery August 27th remove scar tissue and hopefully give me a chance to at least reduce my meds because I am approaching the point where the meds just won't work anymore. Research her meds and their side-effects.

The biggest problem for me is that I can go weeks with no activity so I start thinking "do I need the surgery. Then I have 30 or 40 brief seizures in a week and realize that I really do need this surgery.

Remember that most peoples experiences are different. They may be similar in some ways but each person is their own.

Hope this helped.

lemonplegde

i would just like to post that i have found cranial sacral massage to be effective for me...i'd say physically, emotionally and spiritually.
take care,
tish

curlycanuck

Question her doctors whether her "psychosis" is part of the fugue state which is a common occurence after seizures or whether it could be a side effect of Topamax. Topamax can cause severe cognitive problems as well as aggression, distorted thinking, and depression. Topamax can also lead to aphasia where you speek the wrong words or mispronounce them so that it would seem that your wife is talking nonsense. Have they tried other seizure meds? Topamax while it is effective has many cognitive and behavioual side effects.

Joey_sMom

While some feel Mayo is very helpful, others have not been satisfied. Hopefully you will be among those that are helped by the visit.

We have found Keppra and Zonegran to be the most helpful of my son's medications. He also takes Lyrica and Trileptal. He had elevated liver enzymes with Depakote, was allergic to Lamictal, Dilantin was ineffective and Topamax caused his word finding problems to worsen dramatically. We have never tried Tegretol or Phenobarbitol. We do use Ativan to break the cycle of recurring seizures as necessary. Have you heard of the new (to the United States) medicine for intractable seizures called Vimpat. I'm told the reports on it are excellent though I have no experience with it.

His VNS has been very helpful in reducing the number of seizures and the severity of his seizures. However his settings are quite high and it has been in place since May 2005 (actually we had to have it replaced in January 2009 as he had a low battery reading). I've no knowledge of respiratory issues related to VNS, but that is not to say it is not possible. Since my job was in a neurology clinic and we were able to monitor him closely, we accelerated the pace at which his VNS settings were increased and in fact went beyond the "recommended" settings after speaking with Cyberonics.

His MRIs and CTs have been normal since about a month post coma. He did have abnormal MRIs initially, showing his hippocampus to be the most abnormal area. And, he has not had a recent MRI due to the implant but a recent CT was again normal.

Risperdal is the drug Joey was treated with for psychosis. He does still occasionally have brief episodes of psychosis after repeated seizures, but they quickly resolve on their own.

My son was unable to have surgery as he has focus areas in both hemispheres of his brain (revealed with a PET scan). He is awaiting FDA approval of the RNS system in hopes that it will be the answer we are searching for in regards to seizure control (NeuroPace now has it in clinical trials that are showing excellent results. You can find information on it if you google NeuroPace).

It is thought that my son's encephalitis was a direct result of a ruptured appendix that perforated his colon resulting in peritonitis and sepsis. He had emergency surgery in Kuwait City Hospital and additional surgery at Landstuhl, Germany. The encephalitis diagnosis was made shortly after his return to the states. When diagnosed with E, my son was at Vanderbilt University Hospital in Nashville, Tennessee He did spend several months post E in the Veterans Hospital located in Minneapolis (in the brain injury clinic). He also was placed in a rehab facility in Virginia for a few months. When diagnosed with E, my son was at Vanderbilt University Hospital in Nashville, Tennessee. Since his discharge from the Army our son has lived with us in Indiana. I feel our neurologic care has been and continues to be excellent.

Six years post E, we have moved past the need to have proof of what actually happened or asking why it happened, and we (his parents) have let go of most of the anger the unfairness of the situation once made us feel. We are only looking for ways to better control the seizures and deal with his memory issues. Acceptance has been key to us as we try to move forward with lives so drastically altered.

I've tried to answer your questions, but may have missed some or not made something very clear. If so, feel free to ask again. We are pretty much an open book and anything we can do to help another survivor and/or their caregivers we are glad to do.

Vicky
Caregiver

Tpenkhus

Vicky,

Your reply and story are most helpfull and reveal even more similarities. It's comforting to hear that you worked in a neurology clinic because I know what I'm hearing from you is sound and true.

I too have reached the point of acceptance. I'm a realist. I have also seen Ann during the attempted reduction of medications and what is revealed is terriffic! She's in there. You can see her levels go down and her level of enrgy and alertness go up. He speach patterns get better, ALL gets better. Then we have seizures and we have to go back up on the meds and we see part of her fade away again. I know I'm not telling you anything new. Mayo is my attempt to get another set of brains in on the mix evaluating and theorizing on exactly what you mentioned. Control, with the least amount of side effects. I have not gotten much feedback from her doctors on the concept of trying other meds. I will pick Mayo's brains on that one. MN Epilepsy Group (MEG) has been aggressive as well with the VNS adjustments. She responds very well from the standpoint of her tollerance to increases. I don't believe we are "maxed out" yet, but now I will be prepared to inquire based on your experience.
Thankfully we do not experience the "non-epileptic" events and psychosis. 3mg/ day @ night of Risprdal seems to have done it for us. Surgery seems to be off limits for Annie too because there seems to be no specific point of origin. During stronger seizures you can see it go from one side of her brain to the other by her face and body convulsions. We have Ativan on standby if she has more than two seizures in a day. That rarely happens though and it does indeed seem to knock the cycle down. Ann is "whacked" for about a day and a half after, but it's better than the former. We have not had a PET scan, I don't believe, and I am anxious to read up on RNS and VIMPAT.
I am appreciative of your information and your story. I appologize for being so jumpy here on topics but I wanted to address and comment on all I could in your last. Please keep the comments and thoughts comming and I will do the same. Discussion such as this sometimes leads to things that could make yours or mine or Joe's or Ann's life easier.

Best,

Tpenkhus

Curly,

Thanks for the input. I have read up on Topamax extensively and am aware of both, the side effects she is experiencing and the ones that are possible. In addition I have the added resource as my father as a physician. He's and OB and doesn't begin to prtend to know neurology but his resources are extensive. I had the hospital pharmacist run a computer program for interactions as well. There is one I am slightly concerned about and we are investigationg but the issue that brought about the question has abated for Ann so we are waiting.
Our visit to Mayo will entertain the question of replacing meds with others. Your thoughts and input are always welcome!

Joey_sMom

I'd be sure to STRESS that Ann is "in there" when her meds are reduced. Wouldn't it be great if they could switch some meds and not only stop the break through seizures but allow her to loose the side effects so she can be herself again?!! It is rare that a person's seizures can't be controlled so chances are good that eventually Ann's can be too. By the way, is her neurologist an epileptologist? I would think that would be the case given the name of the group she sees, but then again you never know.

Has Ann ever had an EEG where some electrodes are placed under the skin (usually on the temporal area near the eyes)? Those tend to pick up seizures that the scalp placed electrodes are unable to detect.

If I come up with anything else I think might be helpful I'll be sure to post. Please let us know how her visit at Mayo's turns out. Meantime, I'll keep you and Ann in my prayers.

Vicky
Caregiver

inedgar

My brother has a similar problem wth seizures after viral encephalitis on 2006. He is on four antiseizure meds. (Depakote, Tegratol, Keppra, Zonegran). His sz come from the temporal lobes and he breaks on one to six partial complex per month.Then they increase the dosage. We experience the same effects as you where we repeat the cycle. After consulting at Mayo, a VNS was not strongly recommended.
He consults MINCEP in the TC. At the beginning his seizures was under control w. Lamictal, but he had a very bad reaction. A low dose of Effexor helps him with the auras and anxiety. He also takes long term Coumadin post ecephalitis. He is been receiving Speech Therapy to be more functional.
It seems that our experience have similarities.
Gardeni

Joey_sMom

Gardeni - I'm not clear on what an anticoagulant(Coumadin) would do to help a person who had encephalitis. Is it for a seperate condition perhaps?

Vicky
Caregiver

Tpenkhus

Vicky,

Yes, Ann's Neuro is epileptologist and we really like her. They are looking forward to Ann's visit to Mayo too, which conveys to me that they are very interested in Ann's well being too, and are open to ideas to help. Have not done the "under the skin EEG". Have literally months of the normal to read. I will ask about the under skin. Will post when we get back to let all know how we did.
All this lately is about me and us and I do appreciate your insight and knowledge. How is Joey doing and what is the latest for you and he and your family? How is his physical well being now? Does he have issues regarding side effects or impairment? How are you holding up and where are you seeking information and action regarding his and your situation and well being?

Best,
Todd

Joey_sMom

Good to know Ann sees an epileptologist!

The latest on Joey, well he just completed his last (I believe) round of neuropsych testing. Test results should be in next week, but as yet we have not been given an appointment time to discuss them. Improvement would be great, but I'd be happy with no further decline in cognitive abilities. Other than kidney stones that are a side effect of one of the seizure medicines Joey does okay. He truly does not have many physical issues.

He still has seizures, but they are less frequent and less severe than when he first came home. He is down to 1 - 2 GTC seizures per month and 3 - 4 CP seizures per week. He is impatiently awaiting FDA approval of the RNS in hopes that it will completely stop his seizures.

Memory issues remain at the forefront for him (perhaps that would improve if we could get the seizures under control). He is very much like the Drew Barrymore character in 50 First Dates (but hey, that's better than being 10 Second Tom!) He resents the loss of independence most of all and every once in a while his anger shows through.

This week was the start of several changes aimed at helping with that resentment. He now has Wheels on Meals deliver his lunch meals so he does not have to eat with us. A home health aide will now come to his home for 1 hour on Monday and Thursday and for 2 hours on Tuesday, Wednesday and Friday. They will help with anything he needs (such as preparing a cold supper, doing laundry, house cleaning, ADLs, handling mail, making shopping lists, etc). It is hoped that by them stepping in with help, he will feel more independent. The socialization alone should be of benefit to him.

And we are hanging in there. If Joey had been born with special needs, we would have cared for him as long as possible. This is really not much different than that scenerio, except perhaps that we got a break the first 25 years of his life! The "latest and greatest" information was always available to me through my job so it wasn't necessary for me to search Todd. Now that his neurologist has moved away that may change though. I'll have to give that some thought for sure.

Vicky
Caregiver

Tpenkhus

Vicky,

Well we're back and it is bitter sweet. We had one consult @ Mayo and after 3 hours of review of physicians notes and MRIs and good question and answers we came to the conclusion that her current neuros @ MN Epilepsey Group are doing all they can and are doing it right. Mayo wouldn't do anything different. The Dr. we saw apparently is not a big fan of the VNS. I wouldn't say he didn't like it but he did offer a subdued explanation of waht it could do for her along with the reiteration of the stats on who it helps and how much which I already knew. Thank you for your last reply. Thought I would give you an update on visit and write more later. I read your posting and it brought many more questions to mind. Talk soon!

Debe

Ok I will try and post and not talk in circles. Going to comment on what I read in several posting here.

Vicky you could not have said it better as a parent of a 6yr survivor you have moved on past the anger and looking for answers accepted your son and love him dearly. Both of our parents have passed on. Our Mom fought to make sure my sister had a normal lifestyle. If we had the power of the internet back in 1950's when Mom and Dad were left to deal with my sister as best they saw fit. They would have had a great support system.

Todd my sister was bit by a fly when she was a toddler. She is now 57, she is on Dilantin has been for many years. Also takes Lamictal. She took
Thenabaratal s/p? as a child. She used to see a Neuro who put her on Depacote then took her off. He also messed around with her Dilantin levels uping it lowering it changing how she took it. All he did was mess up her levels and irratate me her sister. He also put her on Klonopin for spiking seizures which he said she had since she had E. I disagreed with him and took her to family Dr who agreed to d/c the Klonopin after taking her off that we saw a siginificant change in her. The neuro who I recently took her to see due to other issues. Wanted to see her back in 3 months and discuss taking her off Dilantin. Well she is not going back to him. She has taken the Dilantin for 40+ years it may not help her anymore but after all these years and fact that along with Lamictal we have her seizures under control she may have one a month. Where as she used to have a couple a month. For the past 20 years her seizures are mild. When she and I would travel I knew that after about 4 days of chaning her routine she would have a seizure. Since the first of this year we have taken two vacations and she was seizure free both times. It ain't broken don't fix it. My sister finally understood her E disability after she met a few other survivors. It has helped her so much. She lives in a group home her staff at the home who have worked there for a few years. Noticed a change in personality and attitude after meeting others with her disability. What a difference it made for her to talk and listen to others that shared her same health issues. I know it helped me understand her disability listening to others and asking questions.
I remember reading several post over past few years about people commenting about headaches. Mom and Dad always thought when Carol would bang her head on floor it was a temper tantrum because she was not getting her own way. We now know it was related to headaches and she did not know how to tell us.

You survivors that post here are a world of information to us caregivers. I and my sister have learned so much from all of you. If we are in question about something just come here and read or ask a question.

Ok now that I have rambled. Todd I think your wife is suffering from E similar to what my sister had back in the 1950's any questions you may have I will try to answer although I was little when sis had her E. I kept well informed by friends of our parents and our mom.

Debe

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