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Old 10-30-2008, 07:21 AM   #1
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Posterior Reversible Encephalopathy Syndrome (PRES)

After my son was born I developed a condition called Posterior Reversible Encephalopathy Syndrome (PRES) which caused a gran mal seizure and swelling of my brain. Thankfully this is a temporary condition and I have made a 100% recovery. I should be free from seizures unless I have a drastic change in blood pressure or pregnancy. It took about 8 months to recover. It has been 19 months since this happened.

My problem is that I know some things have changed in my brain. My personality is slightly different, the way I remember things has changed, and my general initiation of tasks seems altered. These are minor changes that only I seem to notice. Everyone else thinks I am crazy and keeps telling me I have no damage from the seizure. My doctor just wants to give me ADD medications to help my focusing ablility. That is not the answer. I want to know if there are lasting changes to the brain after a seizure. No one seems to want to address this with me. So I am looking to other people that have experienced seizures to see if this is a common feeling or if maybe I really am just focusing too much on this issue and be glad I did not have any damage to the brain.

Any information you all can offer would be greatly appreciated. I feel like I am going crazy and no one understands!



Margaret

 
Old 01-09-2009, 05:52 PM   #2
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Re: Posterior Reversible Encephalopathy Syndrome (PRES)

I was also diagnosed with this same condition 6 months ago after I had my daughter. If you find any information on this could you let me know also because I have been having problems ever since even though my neurologist says i am completely recovered. I cant find any information on how long it takes to feel normal again, and by reading your post it seems it might take a long while. I still have headaches, find it hard to concentrate, my thinking seems like it has slowed down, i struggle to find the right word when talking sometimes, but the second mri they took shows no damage and was completely normal. I thought i was still having seizures because sometimes my right side would tingle and feel weird just like it felt right before I had my seizure. I had my tubes tied right after my pregnancy so i dont know if maybe that made it worse. All the doctors want to do is give me a bunch of pills, which i dont want to be on. Could do you tell me if you also felt this way awhile after the seizure?

 
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Old 01-14-2009, 12:06 PM   #3
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Re: Posterior Reversible Encephalopathy Syndrome (PRES)

It is so nice to hear someone else with the same concerns!! My doctor thought I was crazy and kept showing me the CT scan results saying everything was back to normal. It has been a really fustrating experience. All my doctor wanted to do was put me on ADD medications! I kept telling him that I just wanted to know that lingering problems could exist. I have never gotten that from him. anyway, it has been almost two years since my diagnosis. I went back to work 3 months after my return from the hospital and was fired less than 3 months later due mainly to company changes but also due to the fact I really struggled to learn my new position. I was having to stay late to keep up. Not enough to really show prior to my termination but after looking back. I could really see a difference in how I worked from before the birth of my son. It was so wierd. I knew the information, I learned the processes - but I just could not always "connect the dots" or due the tasks as fast. I also noticed that 1 month after the loss of my job, I could not recall any of my co-workers names (big red flag - except to my doctor). After about a month, I was able to recall the names and still can to this today. However, my mind was not working correctly during that job to where I could retain that information. I had 5 months of unemployment and stayed home with my son. This was great because it gave me a chance to bond with him. In reality I had not fully been present during the first few months of my son's life. During that time, I was not fatiqued but struggled to initate activities. Still not to an extent that anyone else truely noticed. When I returned to the workforce, I struggled but not as much. Over the past 6 months I have seen an improvement, almost back to normal. So there is light at the end of the tunnel. I still do not feel as motivated in general as I was before the birth of my son and the PRES. Hard to say which event this may be related to as my doctor says. I totally understand that caring for a child takes a lot of energy and focus. However, I really feel a change in my personality. Someone on one of these forums suggested this may be due to the experience of going through the trauma of the seizures versus a lasting effect. Sad to say, I have yet to find any information on these issues. Every article I have found has been on diagnosis, treatment and the same basic information I already knew. At least now I know there is one other person out there having similar concerns. Wish there was a chat room for people that have experienced PRES to share these issues. I think the condition is so rare that there is not much really known about the lasting effects.

 
Old 02-17-2009, 06:01 PM   #4
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Cool Re: Posterior Reversible Encephalopathy Syndrome (PRES)

Quote:
Originally Posted by mmoody2008 View Post
After my son was born I developed a condition called Posterior Reversible Encephalopathy Syndrome (PRES) which caused a gran mal seizure and swelling of my brain. Thankfully this is a temporary condition and I have made a 100% recovery. I should be free from seizures unless I have a drastic change in blood pressure or pregnancy. It took about 8 months to recover. It has been 19 months since this happened.

My problem is that I know some things have changed in my brain. My personality is slightly different, the way I remember things has changed, and my general initiation of tasks seems altered. These are minor changes that only I seem to notice. Everyone else thinks I am crazy and keeps telling me I have no damage from the seizure. My doctor just wants to give me ADD medications to help my focusing ablility. That is not the answer. I want to know if there are lasting changes to the brain after a seizure. No one seems to want to address this with me. So I am looking to other people that have experienced seizures to see if this is a common feeling or if maybe I really am just focusing too much on this issue and be glad I did not have any damage to the brain.

Any information you all can offer would be greatly appreciated. I feel like I am going crazy and no one understands!



Margaret
Hi i was diagnosed with pres syndrome 3 years ago, after having my daughter ,she was 6 days old, i got a terrible headache and went to the hospital where they life flighted me to pittsburgh.
I did not have a seizure but my blood pressure was extremly high. they were waiting for me to die on them. I had 3 brain bleeds because of it. YOU ARE NOT CRAZY!!!!! YOU feel the sameway i do!!! Others have picked up on some of it. My memorie is not good!! I guess we just have to deal with it!!

Christy

 
Old 02-18-2009, 06:58 AM   #5
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Re: Posterior Reversible Encephalopathy Syndrome (PRES)

6 months ago I was really depressed about the changes and that everyone kept telling me I has healed. I went back to my doctor last week and he commented on how I seemed to be in a better mood. I explained to him that I now know that I am not crazy - amazing what that will do for a person's mood! I shared that I had found others with the same lasting memory issues as mine. He is a great doctor but he admits I am the only case of PRES he has ever known about. He did prescribe Concerta (ADD medication) which has actually helped some. Thank you for letting me know I am not alone. There is so little information out there about this condition that I am really relying on others that have experienced this. I am considering looking for a new job but am terrified because I no longer know what type of job I can be good at with my memory changes.

 
Old 02-19-2009, 04:34 PM   #6
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Re: Posterior Reversible Encephalopathy Syndrome (PRES)

I'm glad you are feeling better now. I was also the only person that had PRES that my doctor ever treated. He seemed to just want to put me on a bunch of medication. I was on nortripilyn, lopressor and depakote for awhile because they thought I was still having seizures. I gained about 20 pounds from taking all of those, but recently I have gotten off of all of those medications because I went to a new neurologist and he said I shouldnt need to be on all of those. I have been of the depakot for about 3 months now, but have been of the nortriptylyn for about 2 weeks now and I seem to feel a little better so I think the medications were making me feel worse and they changed my blood pressure medication. I was wondering what kind of medications anyone was on after they left the hospital? Sometimes I feel a strange feeling, almost like a tingling sensation from the top of my head down my right side, almost like when your foot falls asleep and it is waking up. Did anyone feel like this after they left the hospital?

 
Old 02-23-2009, 12:49 PM   #7
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Re: Posterior Reversible Encephalopathy Syndrome (PRES)

I was only on Keppra after the hospitalization. My doctor was too nervous to put me on anything due to the concern of raising my blood pressure. Only other medication I have tried is Concerta for my memory and focusing issues. It seems to work pretty good. I do not have any of the tingling feelings but do have more fatique and lack of motivation than before the seizures. Possibly the surgery on top of the seizures has made it harder for your body to recover. I still have times when I get a little dizzy or misjudge distance, but nothing like what you are experiencing.

 
Old 05-19-2009, 10:44 PM   #8
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Re: Posterior Reversible Encephalopathy Syndrome (PRES)

Hi Margaret, I too developed PRES during my last pregnancy, I ahd a seizure 7 days after the birth of my son. My husband and I both have noticed changes since, my memory is terrible i have lost chunks of the past, i have trouble remembering names, and lose track of what i am doing really easily. I tend to get frustrated very easily. I used to be excellent at maths but now struggle with numbers. It was 3 1/2 years ago and my doctor says there is no hope that i will ever have that back. I highly recommend that an ECG be done if it has not been done allready.
I had pre-eclampsia during my other pregnancies and eclampsia during the last one. It all started with a headache and visual disturbances instead of going straight to the hospital i decided to try and sleep it off as i was really tired BIG MISTAKE !!! After i woke MY HUSBAND RACED ME TO HOSPITAL. I could hardly walk, could only say "7" or "8" no matter what the question, even though i could understand what the doctors were asking me, this made me panicky and i was so disorientated that i was crying. i remember nothing of the birth ( i was induced) except for vomiting constantly and being in immense pain (massive headache). My son was born 4 weeks early and only weighed 4lb 7oz. I still suffered from headaches and massive neck pain over the next 5 days and it hurt to walk and lay down. I was comfortable sitting up. On the 7th day i was packed and ready to go home when i had the seizure. It only lasted 1 1/2 minutes thank goodness.
I have seen the specialist 3 times over the last 3 1/2 years for different follow-up tests and he has told me that i have a 10% chance of it happening in this pregnancy, he has assured me that they have made a 'case study' of it and now know the procedures and treatments for PRES. I have to take my blood pressure daily from 28 weeks and i also take Cartia - a low dosage aspirin every day. I too am aware of what symptoms to look for and i definitely won't try to sleep it off, if it happens again. I am still working as a labourer 3-5 days a week and so far has been the best pregnancy i have ever had. (hope it continues).
i suggest to anyone who wants to have another baby after suffering PRES, talk to a specialist first and also get hold of all your medical records so you can understand everything that happened to you. Work out the risks first and understand what you can do to minimise these risks. I wish you all the best Margaret and hope your future is blessed, kindest regards from Sandi

 
Old 07-07-2009, 11:56 AM   #9
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Re: Posterior Reversible Encephalopathy Syndrome (PRES)

Quote:
Originally Posted by yellie83 View Post
I'm glad you are feeling better now. I was also the only person that had PRES that my doctor ever treated. He seemed to just want to put me on a bunch of medication. I was on nortripilyn, lopressor and depakote for awhile because they thought I was still having seizures. I gained about 20 pounds from taking all of those, but recently I have gotten off of all of those medications because I went to a new neurologist and he said I shouldnt need to be on all of those. I have been of the depakot for about 3 months now, but have been of the nortriptylyn for about 2 weeks now and I seem to feel a little better so I think the medications were making me feel worse and they changed my blood pressure medication. I was wondering what kind of medications anyone was on after they left the hospital? Sometimes I feel a strange feeling, almost like a tingling sensation from the top of my head down my right side, almost like when your foot falls asleep and it is waking up. Did anyone feel like this after they left the hospital?
It is so good to see others that have experienced this dibilitating PRES. I have only been home a week, after spending a month in the hospital. I remember getting deathly ill, the day after memorial day, and vomiting from what I thought was a severe migraine headache. My husband came home and while driving to the hospital an hour away, had to call 911 for an ambulance while on the highway. He said I had a siezure while in route, and the ambulance picked me up and took me on the hospital. I spent 8 days in ICU before my neurologist discovered what I had. I was totally blind for 4 days, then my sight came back in peices. It was strange, because when I focused, the vision would disappear. Then, all I could see was half ...as if a curtain was covering the lower half of what I was seeing. I could only see my husband's face from the nose up. Very weird indeed. My blood pressure was 175/156 upon arriving at the ER.
But, like some of you, I too am the only case of PRES that my doctor has treated. I don't really think he knows too much about it, but has assured me that he would be researching to make sure I'm getting proper treatment.
I can't remember much of anything that happened that day. I do remember wondering why the ambulance was so dark, and not being able to see the attendent that was talking to me.
After going home, I got very sick again, and like before, my blood pressure was sky high. AFTER 5 more days of scatching their heads, my husband asked the doctors if this could be my gallbaldder? It turned out that my gallbaldder was operating at 0%, and was septic. It turned out that the gallbladder was what was causing the blood pressure to rise, due to pain and it also effected my liver and pancreas.
Then, to top it all off, I had a flare up with my Crohn's and had to stay another 7 days to get that under control.
Now I take so many pills, including prednisone, that I can't even think. Dilantin is what my neurologist gave me for siezures. However, I wonder if the PRES was caused by my toxic gallbladder, and now it is gone, what are the odds of the PRES ever returning? I hate medications, but I also realize that I sure don't to ever have that PRES again...NEVER. But, I never had a siezure in my life...the side effects for Dilantin are quite bad.
But, yes, I have the tingling sensations that flow over me from time to time, and cannot even dial a telephone at times. I couldn't remember what my kids looked like for a long time, and have lost huge peices of my memory...long and short term. I have to return for a follow up in August, and hope the MRI is good. Before I left the hospital, my MRI showed improvement...but I'm not sure what that means. This is a strange condition, and I am grateful that others are here to share their frustrations with regarding PRES.
Kathy

 
Old 07-08-2009, 10:44 AM   #10
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Re: Posterior Reversible Encephalopathy Syndrome (PRES)

this is a scary and fustrating experience! Sounds like you have other medical conditions that only add to the fustration of PRES. From what I understand, PRES will only reoccur if the precipitating factor happens agian - for me it would be pregnancy, for you maybe gallbladder issues. However, the key is that now you know about it. If I get pregnant agian, we know to keep a sharp lookout for the symptoms. It may or may not happen ever agian. My husband is very nervous about having another baby. Watching me go into seizures and having to call 911 was terrifying to him and he does not want to experience that agian. Hope you are doing well. Did they remove your gallbladder? Sounds like to swealling in your brain has subsided with is great! However, just know that it is a long process for recovery - even though your doctor will likely say you are healed according to the MRIs. The brain takes a while, as you can read in the other posts, to recover from the tramua/shock caused be the sudden swelling caused by the PRES. You may have continued memory issues and diffculty with focus. Keep your neurologist informed of these symptoms but beware of being prescribed medication. As you can tell from the posts, medications are not always the answer. Good luck!
Unfortunately there is little to no information out there so all we can do is share our experiences and learn from each other! Take care, Margaret

Last edited by Administrator; 03-18-2010 at 01:55 AM.

 
Old 01-12-2010, 07:06 AM   #11
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Re: Posterior Reversible Encephalopathy Syndrome (PRES)

Hello, I'm so glad that I've found these comments here about PRES, although my story is a little different, my daughter Laura was diagnosed with PRES in April 2009, she was a cancer patient (Leukemia) since 2006 , she had one more month to finish her treatment when she was admitted to the hospital with two pulmonary abcesses and had to be put on a morphine pump to be able to cope with the pain, that didn't seem to help so they had to add other pain killers...she was also having high blood pressure for at least three days before the incident happened. One morning she just couldn't cope with the pain and we gave her some other pain med. she seemed to me like she wasn't there but again she was on a lot of med. until we realized that she was unresponsive and something was very wrong, it was a code blue, she has to be rush to the icu where they did all the necesary test to determine what it was, but definitaly they thought that cancer was back and it made somehow its way to the brain, something horrible to go through, but when the patient is only 6 years old , it is devastating...for the first two days, the docs were ruling out other possible causes until they had nothing else left but PRES , after three days we noticed that she was totally blind, slowly she was able to talk and get a little better..but she was horrified to open her eyes...slowly she started seeing things but it was really disturbing to her , she said .."what happened to you and dad mommy , you're old, you got really old, I honestly don't know what she could see, but it was really scary to her, slowly she started seeing more, but it was a challenge everyday, one morning she asked me why my face was covered with blood, skin colour would appear to her as blood and she was really scared, another day they were dots everywhere...really weird and disturbing for a little child, and really sad for me to watch, after 5 days in the ICU she was moved to the pediatric floor and docs told me about the PRES and how most people fully recover from it in 48 hours!!!! for us it's been 9 months now, she had to learned everything and I mean "everything" she knew, even putting her robe on was a difficult task , I could watch her for 15 minutes fighting with her robe just to get the right sleeve on....very painful to watch..but her determination is just amazing..she just keeps going..as I say, it's been 9 months and she's nowhere near to what she was before, math is just nightmare, as far as reading , I can say she's back to where she was, and even grabbing the pen it's been a tough one, she has to use a pencil grip now, she's very very slow now , I can tell she has memory loss, or she might remember today , but tomorrow she doesn't and then the day after she's able to remember again......at school they give her extra time...and what she does , she does right, but it takes a lot longer for her...It really hurts me and I cry a lot, and even though she's a cancer survivor and I'm really thankful to God for it, I thought after three long years of chemo and hospital, she would be the same way she was before....After the PRES she was put on Kepra but the side effects were horrible , she could barely stand up , she would get dizzy all the time..and she was also put on med. to control her high blood pressure (Norvasc) . After only five weeks she was taken off of her anti seizure med and in July she had a seizure that lasted for 1 hour, but even after that one she wasn't put on anti seizure meds. it had to happen one last time in Sep. and this time it lasted 90 min. it was horrible, after that she was put on Trileptal, and she'll be kept on it for two years, but I keep wondering if that is slowing her learning progress too....
Can you please help me!!! doctors assure that everything looks normal in her brain, but I know she's not the same...but of course, she's only 7 now and can't explain like you do...so please keep giving me information and tell me how I can help her learn or retain what she learns, I keep telling her ,that there is nothing that she can not do...it will just take longer...but she can do it!!! Am I doing right?? should I keep pushing her ?? or should I just understand that she'll never be the same and not be as pushy?? Please I need help, it is braking my heart to see her go through this after what she's already been through. Your post have been so helpful for me.
Thanks . I'm glad that you're all doing better.

 
Old 01-13-2010, 06:29 AM   #12
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Re: Posterior Reversible Encephalopathy Syndrome (PRES)

Sandra,
This is a very fustrating experience because neurologists are set on the fact that once the swelling in the brain goes down that the condition is "cured". This is not true. It has been almost three years for me and I still have changes in how my mind works. I did not even have the complications like most PRES patients have experienced along with the condition. Do not be discouraged! I recently went to a Memory Clinic at UNC-Chapel Hill, NC. It was wonderful. I almost cried when the neurologist said the follow up problems were normal and he works with numerous PRES patients on a follow up basis. I wanted to hug and kiss him!! He was mad that I was not sent for neuropsych testing right after the PRES accured. this would have better helped to see how the brain was improving over time. It was 4 hours of tests but he was able to tell me what area of the brain was not the same and how to work on improving that specific area of function. His comments were more that the seizures resulting from the PRES can also cause problems with brain functioning. So my recommendation is to get your daughter to a knowledgeable neurologist that can provide neuropsych testing of how your daughter's brain is functioning. I work with the Alzheimer's Association and if you call 800-272-3900 you can have your local chapter help you locate a Memory Clinic that provides neuropsych testing. They will be glad to help. If you run into problems finding someone, let me know and I will be glad to contact UNC Chapel Hill for assistance. Keep the faith, hug your daughter often and let her know she is not alone. She needs to work at exercising her brain but not let the situation get her upset. It takes time but she will get better with the right kind of help! Keep us updated.

 
Old 03-15-2010, 02:41 PM   #13
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Re: Posterior Reversible Encephalopathy Syndrome (PRES)

hi every one im really happy to find this board im worred abou my partner she has been developed prem after are son was born they did not pick up the problem for some time its been 6 weeks now and she can talk but gets hewr words mixed up or cant say whats in her head, she has no control of her body from the neck down and this is worrying. it took her 4 weeks to come around. her mri still show no change in the brain so still realy bad damage. what things can i do to help her

 
Old 03-16-2010, 04:07 AM   #14
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Re: Posterior Reversible Encephalopathy Syndrome (PRES)

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Originally Posted by paul2010 View Post
hi every one im really happy to find this board im worred abou my partner she has been developed prem after are son was born they did not pick up the problem for some time its been 6 weeks now and she can talk but gets hewr words mixed up or cant say whats in her head, she has no control of her body from the neck down and this is worrying. it took her 4 weeks to come around. her mri still show no change in the brain so still realy bad damage. what things can i do to help her
First, let me say how sorry I am to hear aout your partner, and I will pray for her to recover soon. I have almost a year out from my incident of PRES, and I must say that I never thought I would even get to this point of where I am now. I have almost made a full recovery, including my mental functions as well as my physical impairments. I only have trouble with my right foot now, but it appears a complete recover is expected within 6 months.
As far as what you can do regarding your partner's PRES, not much other than be very supportive and encourage her that she will get better. I know that PRES is a very funny animal, and all cases are different, but support, kindness and patience is always a postive medicine. It is still early for her, and time should bring a lot more healing. It is so hard to keep from getting discouraged, my poor husband was almost devistated. But, I attribute my recovery to him, over the doctors, and over any medication, for if it were not for him, keeping me grounded and motivated, I would not made as swift of a recovery as I have. God Bless him for it too.
Keep us posted on how she is doing, and I will be praying for you both.
God Bess and keep you both..

 
Old 03-16-2010, 06:24 AM   #15
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Re: Posterior Reversible Encephalopathy Syndrome (PRES)

I agree totally with the previous writer. The best thing you can do is be supportive. Help be her advocate with the doctors and keep her motivated. It is a fustrating and slow recovery process but it will happen. It has been 3 years since my PRES and it took a good year to really be back to normal. Sounds like your partner experienced major swelling which will take awhile for the brain to heal. I spent a week in the hospital and then 4 more months walking into walls, tables, etc. Keep some humor, keep your patience and smile often.

 
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