mmoody2008
10-30-2008, 11:21 AM
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
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
Sponsor
yellie83
01-09-2009, 09:52 PM
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?
mmoody2008
01-14-2009, 04:06 PM
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.
ace11
02-17-2009, 10:01 PM
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
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
mmoody2008
02-18-2009, 10:58 AM
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.
yellie83
02-19-2009, 08:34 PM
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?
mmoody2008
02-23-2009, 04:49 PM
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.
sand0437
05-20-2009, 02:44 AM
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
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
Kathymreed
07-07-2009, 03:56 PM
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
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
mmoody2008
07-08-2009, 02:44 PM
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! Also, I just started a facebook group titled Posterior Reversible Encephalopathy Syndrome (PRES). I was shocked at the response I recieved from my posting on the message boards and thought I would also set up a support location on facebook also. 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