Need help new to site
 

Hi I have RSD and am usually on that forumn- but I have had something new happen and I think someone here might be able to help me. I had what I think is a brain seizure this week. it woke me up in the middle of the night, it was terrifying. i was shaking violently - but it was definitely my brain- or in my skull- its hard to describe. My body tremors - I thought from the rsd have been increaseing in the last two months. Now since Ihave had these seizures I am wondering what it is? if it is something else? The next one I had also was at night and was accompanied by full body tightness and terrible frightening like dreams like someone was trying to hurt me. I woke up like i was fighting for my life but my whole body was like it was in a vice and shaking.
Very scary. One other thing that two weeks ago I thought was from medications - but I was having a PICC line put in and I was hallucinating- acutally talking to people who were not in the room - but it was very real to me. so it was visual and auditory. My Pain management doctor changed one of my meds and they stopped. But now I am wondering if they had something to do with the seizures? Please help with advice if you can. Thanks so much. I did have a fall a few weeks ago and hit my head pretty hard? But didnt have a concussion or at least I dont think so. Thats all I can think of that might be related. Thank you again- has anyone had anything like this?CZ

Hi CZ,
Welcome to the forum! What you are describing sounds like you might be having either a complex partial sz. or a myoclonic sz. When I have a complex partial sz. I get a funny feeling in my stomach and then I start to see colors flashing back and forth in my eyes, then I blank out but I will walk around the house and continue doing things I just don't remember. What I find interesting is the time you have your sz. a person who has myoclonic sz. will often having them when they first go to bed or right after they get up in the morning. You might want to see a neurologist or better yet and Epileptologist and have an e.e.g. and MRI done to be sure when you hit your head it didn't cause any problems. check out this website for more info. on sz.
http://www.emedicine.com/neuro/index.shtml#seizures check out complex partial and myoclonic seizures to see if this sounds familar to you.

Also check out www.epilepsy.com

Here's wishing you well and May God Bless You!

Sue

Thank you so much,
 

Thank you so much, Sue, I will do that, after I posted this I was reading through the site and it does sound like type of myoclonic sz? as you said. Wow i cant belivie it. Would my treatments for Reflexive Sympathic Dystrophy possibly have caused this? I have had multiple ketamine infusions and had the coma treatment in Germany. I am wondering if that could cause this? I already take some of the medications mentioned on the site for RSD, topamax, and Lyrica. so I am surprised I am still having the seizures. Is this a really serious thing? thank you again so much, CZ

Hi CZ,
I'm no Dr. but from what I've learned over the yrs. A coma, MS, a bad scare, drug & alcohol abuse, genetics, a bad blow to the head and trauma are the main things that can cause sz.
I know everyones body chemistry is different but when I was taking topamax the drug increased my sz. to 23 sz. in a month just like the drug neurontin which I later found out the company making that drug had over $240 million in lawsuits against them for how it's messed up people really bad.
If I may ask when you have your sz. are you aware of everything that's happening at the time and have you noticed uncontrol of the arms and upper parts of your body jerking around. This is what happens to me when I have a myoclonic sz. and it always happens about 15-30 min. after I go to bed or when I get up in the morning. Your RSD may be bringing on the sz. but I can't tell you for sure. My best advice to you is to start taking vitamin B12 1000 mcg. a day cut back on the starch foods and carbs. and stay away from anything with nutra sweet in it like diet soda. It's been proven that nutra sweet causes more electrical activity in the brain which can lead to sz. Start eating foods high in fat or check out the ketogenic diet. This is a diet that builds up keytones in a person body and the keytones stop the sz. To get the best help I would advise you to go to an Epilepsy Center which are usually at university hospitals and see an Epileptologist (Dr. specializing in epilepsy). Also get a calendar and write down each time you have these possible sz. along with a discription. If you are sick make a note of that also because sometime when a person is sick with a cold or virus it can trigger sz. Also some people are affected by a low pressure in the weather triggering sz. Take note of all that and you may see a pattern as to what time of day/night you have any possible sz. and what days of the month you are more likely to have sz. Here's wishng you well and May God Bless You!

Sue

Sue, wow, my coma, was very tramatic, there were complications and I almost passed away, I ended up intubated for 35 days instead of the 5 days as planned. So to say the least, I have had some lasting problems from the procedure.
The first seizure to answer your question was shortlly after i went in a deep sleep, I woke up with violent temors in the head and upper body , yes my arms were involved. My head felt like it was in a pressure device, I was rigid but shaking. And there was fear involved. I waited for it to pass-felt like a few minutes but could have only been 45 seconds, I really dont know. I think I was praying to survive it. My neck was very sore after. I was weak. If I were to say I have warning signs they would be what I call grippers, my ribs and abdomen start sucking in-like something is pulling them from the inside.
the next one was even worse and more diffucult to come out of - I do know it lasted longer and was more severe, this one was in the morning.Again, alot of fear, nightmares but terrifing ones were going on during it but I was shaking violently, I felt as though I was fighting to bring myself out of it, but I think I was waitng for it to pass.Again it was in my head, upper body.
I think I may have been having them for a while and not know what they are. Is it possible to scream out at any part of them? I have done that before. Also I have woken up with the bed in total disarray with the sheets knotted around me. My husband said it looked like I had fought off something.
I have body tics and temors escalating, that could be from the rsd. I dont know. Alot of us with rsd have the spasms. But I know this is different and new.Its strange to say , having never had seizures, but i knew immediately that was what it was. does that make sense? I do use alot of splenda- is that the same as nutra sweet/ and I will cut the carbs. I dont drive due to pain meds, but fortunatly my sister is coming tomorrow and I can get the B12. the diet your recommedding sounds alot like atkins which I am familar with -so thats not a problem- I dont want to have anymore of these so Im going to get moving on this. I am going to start looking for a doctor.Ill pm you if that is ok. on locations. I cant thank you enough for you time and help. I really appreicate your help Sue. Sincerely, cZ
I forgot to mention I have alot of headaches- I am concerned about the topamax, I am trying to remember if I took an extra topamax because I had a migrane coming on- its possible. I will start the diary.

Hi CZ,
What you are discribing sounds very much like a myoclonic sz. or possibly and tonic clonic (grand mal) sz. Yes, the splenda is just like nutra sweet so I would stay away from that.
Women have a harder time than most men when it comes to sz. because the hormones changing each month can trigger sz. Estrogen gets high causing more excitment in the nervous system while the progesterone level goes down and it's progesterone that helps calm a persons nerves. In regards to the diet it is very much like the atkins diet but more strict. You can buy the book titled: " The Epilepsy Diet Treatment" by Dr. John Freeman this book discribes the diet and how it stops sz. for many people. I had a cousin that was on the diet and flew airplanes during WWII and he never had a single sz. but after he got out of the military and came home he went off the diet and his sz. started again. The diet has been around since 1927.
Migraines is how I started when I was a kid I would get the wicked headaches and within time it lead to epilepsy. Often there is a connection between the to. I wish you only the best of luck and May God Bless You!

Sue

Below in another reply you mentioned you had ketamine treatments. Did they work for you at all? How long ago was that? If I was you, that is the first place I would look at as at least part of the cause of your current problem. It is a strong and powerful medicine and the side effects are known to last for a very long time. Ketamine can cause hallucinations and other side effects long after the treatments.

Since they stopped when your doctor stopped one of your meds, apparently he knew what caused it. What did he say?

thematrix777

The Matrix,
 

Hi Matrix,
The ketamine treatments were for my RSD, they orginally helped a great deal and then my rsd came back full body unfortunately. i still receive booster infusion every two-three months to keep the pain level down- so they assist. However I require strong daily pain meds as well. I have a bad case of rsd- they are all bad- mine is particuarly stubborn -so my doctor tells me.
The nurse who was putting in the picc line felt it might be a medication mix that was causing my hallucinations. Not my doctor. speciafically zanaflex, mixed with the Opana er,which i had recently started taking instead of bacolfen. When I reported what the nurse said to my Pain management doctor he did nto agree- but I went back to the bacolfen anyway with his blessing and the hallucinations stopped. I am not having hallucinations now.. The seizures are seperate from them.
Regarding long term effects of ketamine i have never been able to find an article on that but would be very interested if you could direct me?
My rsd specialist said when I inquired about the seizures that it was over excited motor neurons in my spinal column and brain causing the problem. To me the feel like full blown seizures- however I say that haivng never had seizures before. Thank you for your help. Cz

Hi CZ,
How are you doing? I wanted to let you know another thing that can trigger sz. for some people is if they drink to much fluids especially in the warmer weather. When a person drinks a lot of soda, ice tea, water etc. the extra fluids in the body can trigger sz. for some people. Another thing that can sometimes trigger sz. is flashing bright lights like strobe lights. Yrs. ago when the old apple 2E computer was big I used to type and the florescent green on the monitor would trigger sz. for me after being on it for 5 min. My epi (Epileptologist) did a special e.e.g on me where the flashed different color strobe lights one at a time and they found that the colors florscent green, amber, and bright white (like the sun shining on the snow.) would trigger sz. for me. Other things that can trigger sz. for some people is when they bathe the hot water from the tub or shower will hit their head or bother their body triggering sz. I have noticed that I have more sz. in the fall and winter compared to the spring and summer these are known as seasonal sz. and the reason why it happens is because there's less sunlight and seriton (sp?) during the fall and winter compared to the spring and summer. Here's wishing you well and May God Bless You!

Sue

Light sensitive
 

Hi Sue, its interesting you say that, its hard for me to say as rsd also makes me sensitive to light. I have tried my best to really limit my diet soda as the caffenine is not good for rsd either. It sounds like ,if these do end up being sz for me , that the do's and donts coould be similar to those that I already have to follow for RSD. That would be nice! It would certainly make life simpler. Thank you again Sue, I will let you know how appt. goes.Hope all is well with you, Sincerely, Lisle

Hi CZ,
How are things going? I wish you only the best of luck with your check up. You might want to mention something to the Dr. you see to have them do a special e.e.g. on you where they flash different color strobe lights one at a time to see if certain colors trigger sz. for you. If this happens it's known as being "Photosensitive" many people with E have this problem. If you think of any questions you want to ask your Dr. you might want to write them down so you don't forget. I always do that so I don't forget to ask any questions. Here's wishing you well and Have a wonderful weekend. May God Bless You!

Sue

Cat Scan results
 

Sue, my primary ordered a STAT cat scan, looking for a bleed she said, it came back negative, so thats good news. The question is where do I go from here? No explanation for the seizures yet. do I move forward and see the neurologist? Push to have the eeg and mri? Please advise. I guess my question is is the cat scan enough or do I need the other tests to find out what is causing these sz? thanks Sue, CZ

More Tests
 

Hi CZ,
My advice to you is to set up an appt. with an neuro or epileptologist and have them handle the case. A CT scan isn't going to show as much as an MRI will or an e.e.g just make sure when and if you have the MRI done that they do it where they give you a shot of the dye that makes you feel hot for a couple of min. I can't remember the name of the dye but take my word it shows a lot of detail that a CT scan won't show. What the Dr. should do is do an MRI taking a few pictures without the dye and then give you a shot and the dye will go through your system and they can get more detail taking a few more pictures with the dye. As far as the e.e.g. have the Dr. order a sleep deprived e.e.g that will probably show more. A sleep deprived e.e.g. is when a person has to stay awake all night and can't go to bed. This in turn can trigger sz. for many people. Lack of sleep, and stress are the 2 main things that can cause sz. If neither of these tests show any problems it could be that you have brain damage to deep in the brain and the tests aren't showing it. That happened with me on the left side of my brain. Here's wishing you well and May God Bless You! Thanks for keeping me posted.

Sue

Hi CZ,
Sorry I forgot to tell you that if you have an MRI done you might want to ask the Dr. to order a FMRI (functional MRI) or a comtrast MRI with the comtrast MRI they will do a quick blood test first and then they will have you drink or either give you a shot of the comtrast dye and sometimes people get sick from the dye. I know the last time I had this done I had a nausea for 2 days and then it cleared up. Here's wishing you well and May God Bless You!

Sue

Mri
 

Thanks Sue - I will definitely ask when I speak with the doctor this am. I know they are ordering the eeg as well- dont know if I am spelling that correctly! i hope they find what is causing these sz and the non stop headaches-the headaches are getting worse and seem to be on the left side primarly- I dont know if that is significant- also have vertigo. thank you again for all your help Ill let you know. Sincerely, CZ

Hi CZ,
I hope all went well for you when you saw your Dr. My prayers are with you and I wish you the best. May God Bless You!

Sue

Thank you everyone
 

Hi thank you so much everyone, My MRI is wednesday and my EEG is Thursday, i will let you know how things go. Another site recommended that I have a sleep apena test as well. This was primarly because of the fear in my seizures. I was wondering if anyone else has sleep apnea along with their sz. Hope I didnt post some of this already, I have severe memory loss from my RSD treatments! So forgive me if I did, Sincerely, CZ

Hi CZ,
I'm glad that you are having a sleep apnea test done. I have a brother that has sleep apnea but he's never had a single sz. his Dr. has him on a breathing object (I'm not sure what it's called) because when he tries to sleep he snores so loud and he stops breathing, then he can't get to sleep but since he's been using the breathing object it's helped him greatly. I know there are different form of sleep apnea and it can lead to sz. for some people. I have also wondered if you may have narcolepsy which could answer the questions as to why you wake up scared or frightened sometimes. After you get your test results back this will answer all of your questions as to what's going on. I wish you the best of luck and May God Bless You!

Sue

Hi CZ,

I also do have Sleep aphea. I go with the Cpat, which it wasn't hard to get use to. It keeps my breathing steady and during the night I seem to sleep better. I really have not had problems with them together.

Let me know if you have any questions.

Darlene:hug:

MRI results and so on
 

Hi I have my MRI results- clear except for sinus infection. The disappointing news is that my primary doctor who ordered these tests, the cat scan and the MRI does not want to go further with the EEG. She doesnt want to run it. Even though she has seen the myclonic sz. or body spasms?- so Im a bit discouraged, from all Ive read mris are often negative. I guess Im going to have to wait til I have my 6th sz and then pursue this with her again.I dont know how to say it, but I really think that I am having seizures I have had spasms from rsd for 4 years, there is a big difference from what I am experiencing now. So whether it is sleep apnea, sleep paralysis, or some type of sz, I am stuck right now. Then again, you have so many many problems with RSD- perhaps it is just another manifestation of that. Its easy to become obessive with this disorder(RSD), and I dont want to be doing that. So I am thinking I will just wait and see how things continue to unfold. Thanks for all of your help. If anything changes Ill let you know. Sincerely, CZ

Hi CZ,
I'm sorry to hear that your Dr. will not do an e.e.g. I find that very strange. Since you are the patient and you are the one paying the medical bills you have every right to request that an e.e.g. or MEG be done to find out what's going on. I've had disagreements with neuros in the past and all I've had to say is that I would call the Medical Conduct Board and then they change there mind and do the tests only to find out I was right. You have every legal right to request the e.e.g. be done. You might want to call the Epilepsy Foundation of America to get more detail of your rights. 1-800-332-1000. Here's wishing you well and May God Bless You!

Sue

Hello! Also new to site
 

Hello my name is Jules2 and I am also new to this site. My wife of 14 years has just been diagnosed with left temporal focal seizures, in March 2008.

BTW we are both nurses, she is a Pedi ICU nurse and I am a Neuro nurse. A few months before she was diagnosed I noticed that she would suddenly make certain statements when trying to speak to me. For example, if she was trying to point to my shoes, she would say "those are your people" or she uses the word "person" a lot. At first we would laugh about it and dismiss it. I started noticing that she was doing it more frequently, so being the neuro nurse that I am, I began to get very worried. To make a long story short she had an MRI, EEG, Lumbar Puncture performed and nothing was detected except for the fact that she was having a lot of seizure activity in her left temporal area.

Her neurologist started her on Lamictal and currently she is on 200mg twice a day. The problem is that she has the episodes about every 2 weeks. And to top it off we just found out we are pregnant (6 weeks)......breathe.

This morning she woke up and immediately started to experience the focal seizures, mind you it is only speech. She has never had a grand mal seizure (thank God). We both became worried and I called our Neurologist (good friend of ours) and she asked that I give her the Klonopin we keep handy for these situations. The Klonopin makes her very sleepy but it seems to control it. She said it is probably the hormones from the pregnancy ( i hope that is what it is).

I hate this and it makes me sad, scared and frustrated because the medication obviously is not controlling it. My wife is "Chatty Kathy" and the nucleus of our family. We have an 8 year old daughter. I miss her keeping us all in line and running this household. I miss my wife and I want her back.

I dont know what to do and hope that someone her can shed some light on our situation. I have dealt with epileptic patients for over 17 years as a neuro nurse and I DO NOT want my wife living with this problem and much less having grand mal seizures.

Please shed some light on this sitaution to help me cope better to be there for my wife. I can't even imagine how scared she must feel.

Thank you,
Jules2

Hi there
 

You have got a bunch of good info..

Sincerely
shawn33

The MRI