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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 9 of 9. This is the beginning of the thread.
Posted by chickadee on May 12, 2003, at 23:14:52
Hi! I'm new & I'll try to make this short,but I need HELP Desperately. I'm a 33yr old Mother of 5 little children under 10. I got hit by a car in 2001 and 9 months later they found out I had some sort of Partial complex Brain Seizure Disorder. I don't recall a lot of things and I can't cook anymore. I also don't like many of the foods and drinks I used to which is weird! I'm a Mom who loved to cook. Now I vomit if I smell food or see it the majority of the time. To be honest we really still don't know what the deal is, except I am NOTHING like I was before. Anyway They put me on Effexor xr (which helped a lot) I still get Brain Snaps & a few mild side effects,but nothing like if I try to take myself off the medicine.
I'm Currently on:
Effexor XR (375mg/day) - Started about 2½ years ago
Seroquel (100mg/day) - Started about 1 year ago
Topamax (125mg/day) - Started about 3 months ago
Neurontin (400mg/day) - Started about 6 months ago
Have tried:
Paxil, Klonopin, Xanax, Risperdal, Trileptal,
Embarrassingly I am also pulling my hair out & I have even caught myself doing this when I sleep.
I am having some break through Panic attacks, but I am trying to deal with those. I took xanax and had no problem with that. It didn't make me groggy or anything weird. Now I wish I were back on it and maybe totally off Nuerontin. I just don't know.. Who can help me figure this out?
Can someone Help me Please? Is it a combination of medicines I am taking or just one of the pills? Has any one had any of these symptons or feelings? I just can't live this way anymore.
It is killing me. I used to go out of my house and Now I barely will. My children and husband miss me. I miss me. Thanks for your Time!
Posted by djmmm on May 13, 2003, at 15:58:33
In reply to Help gained 87+ lbs. on Meds I barely Eat =o(, posted by chickadee on May 12, 2003, at 23:14:52
>
> Hi! I'm new & I'll try to make this short,but I need HELP Desperately. I'm a 33yr old Mother of 5 little children under 10. I got hit by a car in 2001 and 9 months later they found out I had some sort of Partial complex Brain Seizure Disorder. I don't recall a lot of things and I can't cook anymore. I also don't like many of the foods and drinks I used to which is weird! I'm a Mom who loved to cook. Now I vomit if I smell food or see it the majority of the time. To be honest we really still don't know what the deal is, except I am NOTHING like I was before. Anyway They put me on Effexor xr (which helped a lot) I still get Brain Snaps & a few mild side effects,but nothing like if I try to take myself off the medicine.
> I'm Currently on:
> Effexor XR (375mg/day) - Started about 2½ years ago
> Seroquel (100mg/day) - Started about 1 year ago
> Topamax (125mg/day) - Started about 3 months ago
> Neurontin (400mg/day) - Started about 6 months ago
> Have tried:
> Paxil, Klonopin, Xanax, Risperdal, Trileptal,
> Embarrassingly I am also pulling my hair out & I have even caught myself doing this when I sleep.
> I am having some break through Panic attacks, but I am trying to deal with those. I took xanax and had no problem with that. It didn't make me groggy or anything weird. Now I wish I were back on it and maybe totally off Nuerontin. I just don't know.. Who can help me figure this out?
> Can someone Help me Please? Is it a combination of medicines I am taking or just one of the pills? Has any one had any of these symptons or feelings? I just can't live this way anymore.
> It is killing me. I used to go out of my house and Now I barely will. My children and husband miss me. I miss me. Thanks for your Time!Wow...I'm sorry...I too was in a car accident and got epilepsy as a result (specifically a left frontal dysrhythmia; absence seizures) although this was a few years ago, and my EEGs are now fine, I took (at one time or another) Neurontin, topamax, tegretol, zonegran, klonopin.
Anyway, It sounds to me like you are still having seizures, as Im sure you know, depending on what part of the brain your injury is in, your seizures can be manifested in just about anyway...smells, sounds, etc. OR strange smells and sounds, etc can actually precede or be the result of the seizures...Im sure the hair pulling and compulsive eating have something to do with it. Remember, you have injured your brain.
You may be over-medicating, or on the wrong anti-epileptic. Please be sure that you are seeing BOTH a Psychiatrist AND a Neurologist and that they know exactly what eachother prescribe.
There are literally dozens on anti-epileptic meds and like antidepressants, you often have to find the right combo and dose. so don't give up.
Posted by chickadee on May 13, 2003, at 21:57:49
In reply to Re: Help gained 87+ lbs. on Meds I barely Eat =o( (nm) » djmmm, posted by chickadee on May 13, 2003, at 21:56:06
Thanks for the kinds words and advice!
The only thing I am not doing is not compulsive eating. Infact I barely eat 1/2 of what I used to.
Sorry Maybe I didn't explain that part well. What happened to me is the most Frustrating Thing. I am sure you know first hand. You look ok on the outside except for the occasional staring into space & small eye twitching seizures,but inside it is like I am fighting the Battle of my lifetime! I Am seeing both Doctors,but they aren't sure what it is that is caused me to go from 119lbs to 203 in less than 8-10 months.
I dont think I would be half as depressed if my weight would go back to normal. Then Maybe I could deal with this *New Brain* I have been left with. Thanks Again :)
BTW....
Has Anyone been on Both Neurontin & Topomax like me and expierenced the weight gain? Once you got off of Neurontin did you lose the weight?
Thanks.
Posted by djmmm on May 14, 2003, at 19:08:18
In reply to Re: Help gained 87+ lbs. on Meds I barely Eat =o(, posted by chickadee on May 13, 2003, at 21:57:49
I didn't gain any weight and I was on Neurontin (1800mg) and topamax (400mg) at the same time...I think I had started taking Nardil too at that time, and most people gain weight on nardil...
Gaining weight in relation to antidepressants and antiepileptics is a strange science. I think the only med I ever gained weight on was celexa.
The staring off into space...I can relate to that, because thats what I used to do, those are absence seizures.
write everything down, everything that is strange, and tell your family to let you know when you have these episodes, or do anything else out of the norm, so when you see you neurologist, you have something to present s/he with...that will ease your mind, so you don't have to try and remember every little thing, which is hard, given your situation.
My best advice to you is 1 be as progressive as you can, if your meds are giving you strange side-effects (which I realize may be hard to recognize) change the dose or the med.
2 Education, there is so much information on epilepsy and medications on the internet
3 keep you family involved through communication and education
4. dont be afraid to ask for help (friends, husband, kids, etc)http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed
http://www.rxlist.com/
http://www.epilepsyfoundation.org/
http://www.epilepsy.com/epilepsy/
http://www.nlm.nih.gov/medlineplus/epilepsy.html
Posted by chickadee on May 14, 2003, at 21:40:06
In reply to Re: Help gained 87+ lbs. on Meds I barely Eat =o(, posted by djmmm on May 14, 2003, at 19:08:18
> I didn't gain any weight and I was on Neurontin (1800mg) and topamax (400mg) at the same time...I think I had started taking Nardil too at that time, and most people gain weight on nardil...
>
> Gaining weight in relation to antidepressants and antiepileptics is a strange science. I think the only med I ever gained weight on was celexa.
>
> The staring off into space...I can relate to that, because thats what I used to do, those are absence seizures.
>
> write everything down, everything that is strange, and tell your family to let you know when you have these episodes, or do anything else out of the norm, so when you see you neurologist, you have something to present s/he with...that will ease your mind, so you don't have to try and remember every little thing, which is hard, given your situation.
>
> My best advice to you is 1 be as progressive as you can, if your meds are giving you strange side-effects (which I realize may be hard to recognize) change the dose or the med.
> 2 Education, there is so much information on epilepsy and medications on the internet
> 3 keep you family involved through communication and education
> 4. dont be afraid to ask for help (friends, husband, kids, etc)
>
> http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed
> http://www.rxlist.com/
> http://www.epilepsyfoundation.org/
> http://www.epilepsy.com/epilepsy/
> http://www.nlm.nih.gov/medlineplus/epilepsy.html*************
Thanks so Much for the insight!
This gets so confusing and frustrating. Then to top it all off I already feel embarrassed and like a burden to my family, so it's hard to just come to grips with this. I guess I will just have to though. It wasn't my fault a car hit me and hurt my Brain and I dont know why I keep thinking it was. I'll start that Journal. I think thats Great Advice. ((hugs)) ~Chickadee
Posted by KarenB on May 17, 2003, at 16:06:57
In reply to Re: Help gained 87+ lbs. on Meds I barely Eat =o( » djmmm, posted by chickadee on May 14, 2003, at 21:40:06
Chickadee,
Seroquel and Effexor are most likely the culprits for the weight gain. An alternative to Seroquel could be Geodon ( no weight gain) and to replace Effexor you could try Wellbutrin - it has a different mechanism in the brain but is associted with weight LOSS. Worth a try in my opinion.
There is also Trazodone, which is more often used for sleep than as an antidepressant but I am currently using it for an antidepressant/sleep med and it is working, but it is sedating. I am also on a stimulant, Adderall, which counteracts the sedation.
If you go off the Effexor, it is important to titrate down slowly or you will get some horrendous withdrawal symptoms.
I have been on Neurontin and Topamax but not together. Neurontin did not make me gain weight and Topamax on it's own caused serious weight loss.
Exactly what are your symptoms, if not medicated, besides the staring into space, which I agree sounds like a mini seizure.
One more thought: I had a friend who was experiencing that type of seizure you describe and it was finally discovered that it resulted from intake of aspartame (Nutrasweet). She quit the diet sodas and no more seizures. I am curious, do you drink diet drinks or eat anything labeled "lite?"?
Karen
Posted by Barbara Cat on May 19, 2003, at 12:37:29
In reply to Help gained 87+ lbs. on Meds I barely Eat =o(, posted by chickadee on May 12, 2003, at 23:14:52
So sorry you're going through that kind of pain. It's bad enough to have the initial pain from the accident, but then to have these lingering confusing symptoms is frightening. I also have gained weight, about 40 pounds, since I hit the wall from ongoing depression and then fibromyalgia. I couldn't get out of bed for almost a year. I was also on two notorious weight gaining meds (Remeron and lithium) and now on lithium and a tricyclic. I'm now doing much much better for many reasons - out of a stressful job, time to heal, journaling, etc. But the one ingredient that makes all the difference is moving my bod. I know it's the last thing you want to do when feeling sick, dizzy, depressed. I literally forced myself to start stretching, then light exercise, etc., until it started to move that sluggishness out of my body. However, you have to find an exercise that is easy and accesible, otherwise you won't do it.
The biggest help was starting to finally use my Rebounder that had been moldering in the garage for years. It's a mini trampoline that works beautifully even if you just bounce up and down for 2 minutes a couple times of day. It clears the lymph system, helps with balance, exercises every cell in the body. I have it in the living room so it's right there ready to jump on - no excuses. My rebounder is a very good quality one, not the cheap kind you get at a sporting good store. The cheap $40 ones do more damage than good. A good website to visit is
www.reboundair.comI have nothing to do with their sales, but it is where I bought mine and they have a lot of excellent information on why rebounding works so well. I do hope you give it a try. I think it will make all the difference in your condition - plus, it's alot of fun!
Posted by chickadee on May 19, 2003, at 22:52:41
In reply to Re: Help gained 87+ lbs. on Meds I barely Eat =o( » chickadee, posted by Barbara Cat on May 19, 2003, at 12:37:29
Thank you everyone for the good advice! I am definetly going to give everything a try. Anything is better than the *Heck* I am living through.
I got some very Frustrating News today..My Auto Insurance has yet to pay for the Medical part of my injury stating they dont want to pay the $297,ooo.oo they are behind and they want to give us $25,.ooo.oo. They say me having depression before the accident (which was so mild and I was a fully functioning mother of 5 and so on)caused me to have seizures and not my head hitting the car window at 70MPH. I dont know how they found a loop hole in the auto policy,but our family has suffered tremendously and now today I have had panic attack after panic attack. The problem is I dont want to gain anymore weight. Should I just tell my Doctor PLEASE find out what is making me gain weight as it is causing me,with all this *Other stuff that is going on, to be even more Depressed? My Therapist/RN,who helps with my cognative therapy, suggested Lamectil? Her son takes it and hasn't gained weight on it & is seizure free. Has anyone tried it? I feel like my world is Crashing down. We have no Money and more debt waiting for them to pay what they owe from this accident. Please tell me There is justice and it gets better living with seizures & Head injuries! I dont mean to whine, but this is devistating...
Posted by Snoozy on May 19, 2003, at 23:24:28
In reply to Re: Bad News Today Someone Help! , posted by chickadee on May 19, 2003, at 22:52:41
Hi -
what a terrible thing to have to go through, I'm so sorry. If you don't have one, have you considered getting a lawyer to help you with the insurance company? They have teams of lawyers working to find all of those loop holes. On the face of it, it sounds pretty silly to me that mild depression would cause seizures, as opposed to a head injury.
A lot of lawyers will work on a contingency basis - you don't pay them until you've received your settlement, and then they take a previously agreed-on percentage, usually 25-33%. I know that sounds kind of unappealing, but sometimes it is worth it to have a professional working on your behalf so that you don't have to deal with the nonsense runaround that are causing panic attacks.
I wish I had more to offer you. I really hope things get better for you.
> Thank you everyone for the good advice! I am definetly going to give everything a try. Anything is better than the *Heck* I am living through.
> I got some very Frustrating News today..My Auto Insurance has yet to pay for the Medical part of my injury stating they dont want to pay the $297,ooo.oo they are behind and they want to give us $25,.ooo.oo. They say me having depression before the accident (which was so mild and I was a fully functioning mother of 5 and so on)caused me to have seizures and not my head hitting the car window at 70MPH. I dont know how they found a loop hole in the auto policy,but our family has suffered tremendously and now today I have had panic attack after panic attack. The problem is I dont want to gain anymore weight. Should I just tell my Doctor PLEASE find out what is making me gain weight as it is causing me,with all this *Other stuff that is going on, to be even more Depressed? My Therapist/RN,who helps with my cognative therapy, suggested Lamectil? Her son takes it and hasn't gained weight on it & is seizure free. Has anyone tried it? I feel like my world is Crashing down. We have no Money and more debt waiting for them to pay what they owe from this accident. Please tell me There is justice and it gets better living with seizures & Head injuries! I dont mean to whine, but this is devistating...
This is the end of the thread.
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