STRESS and side effects from meds

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RanMan
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Date Joined Feb 2003
Total Posts : 665
   Posted 9/14/2004 11:47 AM (GMT -7)   
Hi folks, I just wanted to vent.
After reading some of the other posts on this thread, I felt I had to add my story.
 
I've had Ulcerative Colitis (very similar to CD) and Epilepsy since 1979.
Both conditions are stress related (in my case).
I've had everything under managable control until 6 yrs ago, my 12 year old son was diagnosed with bi-polar (manic depression) and has been puting this family through hell.
 
Then my petit-mal siezures became more frequent(almost daily) from the added stress in the household. 
Then my UC flare-ups started to be more frequent as well and more severe. As a result I had to increase my UC meds, and since this effected the metabolic rate of my epilepsy medication, it has to be increased to the point where I am a walking zombie and afraid to go out for fear that everyone would think I was a drunk. This shows me that there are still so many people that are still uneducated about this topic.
Some people still think that if you have epilepsy, you're possessed by satin.
 
This effected my social life big time and causes depression.
It even effected my personal life.
My own family was embarrassed to be seen with me. I just had to learn to deal with it.
 
In a lot of cases stress is a major trigger for epilepsy, CD and ulcerative colitis, if that flares up then you will have to increase your meds and that can throw everything out of wack.
I thought I was living a fairly normal life but it must be worse  than I thought as my employer of 29 years has put me on medical retirement and I'm only 48 yrs old.
 
Randy (Ontario, Canada)
 

Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 9/14/2004 7:58 PM (GMT -7)   
Hey Randy,
I hear ya man. I have Lupus, Fibromyalgia, seizures, and I had a stroke two and half years ago. I'm 30.  I understand your frustration with UC and your meds. I'm in the same boat. When my lupus flares up, so do the seizures, which makes all my meds wonky, not to mention my own well being!  I feel like a freak. It's an absolute miracle from God that I can function at all. You're right, stress is my biggest enemy too. For the seizures and the lupus. I just do a lot of praying, and I have a lot of faith in God, which gets me through so much.
I hope your son gets the care he needs. My dad is manic depressive as well. He was diagnosed almost 10 years ago. I lived my first 20 years with him in his manic-depressed state, and now these past 10 years have been incredible. He is a different person with so much drive and life! It's wonderful. I know your son will be okay too. It's good that he has been diagnosed at a young age. He has his whole life ahead of him!
Well, keep the stress down Randy! Yeah, easy to say hard to do right! I know! Just wanted to send a little encouragement your way!
 
Ginny
 (in Calgary!)
"Now faith is being sure of what we hope for and certain of what we do not see."
Hebrews 11:1


AARONSMOM
New Member


Date Joined Aug 2004
Total Posts : 19
   Posted 9/15/2004 4:13 PM (GMT -7)   
Hi Randy,
I just wanted to say that,you seem to be very much in control of your Epilepsy,in other words you let the docs prescribe the meds but use them to suit your body and your condition.Being in charge of your condition
your body and your mind is so important,adjusting the meds to suit different circumstances.
Reading this post,has encouraged me to see beyond a set,day to day routine of taking medications. You have to be so precise sometimes,from the people around you, and to other interfering conditions, should be taken into consideration along with regular meds.You seem to be doing all that perfectly.
Well,a little bit of stress is very normal :))
Take care
ISHIK


RanMan
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Date Joined Feb 2003
Total Posts : 665
   Posted 9/16/2004 8:52 AM (GMT -7)   
To Rocking4Epilepsy:
 
For your info. The meds I'm taking for my epilepsy are(been the same for over 20 years):
 
325 mg  Dilantin daily
160 mg  Pheonobarb daily
3,000 mg "Asosol" (for ulerative colitis) 1,000 3 times a day.
 
Randy

RanMan
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Date Joined Feb 2003
Total Posts : 665
   Posted 9/16/2004 9:32 AM (GMT -7)   
To ginny:
 
I don't know about you but I've noticed that the petit-mal seizures and the (in my case) ulcerative colitis only seem to happen or "flare up" AFTER a stressful situation ie: the next day, so you can almost expect it and prepare, ie: Doubling up on the meds.
 
But you have to be very careful when messing with your dosages. Some of the side effects are unreal. EI:
Gait, co-ordination, speech, concentration ,erectile disfunction (from long term use).
 
When I'm
driving, I seem to always be going too far to the right because I
feel that the oncomming traffic is going to hit me.

If I'm walking down the street and someone is walking towards me I
always get paranoid and feel uncomfortable or even if someone is in
the same room as I am i get paranoid and all of a sudden the room
feels over crowded, even with my own family.

All my driving is jerky (so my wife says) like fast starts, fast
stops, jerky steering and generally poor judgement, and my meds have
also effected my eyesight.
 
I've been concerned about long term use of the meds. and side effects.

I've been on diantin and pheonabarb since 1979 and now according to my neorologist, although my seizures are controlled, if I were to change meds, I would run the risk of lower brain stem damage as well as more seizures (more severe).

Randy (Ontario)


RanMan
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Date Joined Feb 2003
Total Posts : 665
   Posted 9/16/2004 10:04 AM (GMT -7)   
To Rocking4epilepsy,
 
Re: side effects, I have a post just under yours to ginny.
 
No wierd hair growth, no liver problems (it probably helps that I don"t drink), no dental problems or overgrowth of the gums.

RanMan
Veteran Member


Date Joined Feb 2003
Total Posts : 665
   Posted 9/16/2004 10:54 AM (GMT -7)   
To Rocking4epilepsy,
 
Did you know that it is a scientific fact that epilepsy and ulcerative colitis go hand in hand, usually brought on by a long periods (years) of stress.
 
My case has been published in the Canadian Medical Journal.
 
 
Randy
cool cool cool cool cool

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 9/16/2004 5:03 PM (GMT -7)   
Randy,
Holy cow, your driving problems are EXACTLY what I am experiencing right now! I thought I was going nuts. I'm also having panic/anxiety attacks while driving. Not a good combo. I've never had problems with my driving until now. And these panic attacks are completely new ground for me. I'm quite upset about the whole thing. I'm seeing my Neuro on the 29th, and I want off this stuff (Clobazam) and on to something else. this doesn't work for me! Especially when I'm dealing with lupus at the same time. Thanks for your reply, I appreciate it!
 
Ginny 
"Now faith is being sure of what we hope for and certain of what we do not see."
Hebrews 11:1


Daisy9980
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Date Joined Sep 2004
Total Posts : 775
   Posted 9/21/2004 9:45 AM (GMT -7)   
Hello I am new to this site and wanted to introduce myself.  I was referred here by Rocking4Epilepsy.  She has been a great support to me.  I wanted to come here and say hello to everyone.  I have Complex Partial seizures.  I take Keppra twice a day for this.  I also am a very stressed soul.  Due to my stress, I have an ulcer, reflux and IBS.  Little too much info, sorry.  I am pleased to join this forum and look forward to positive story sharing in the future.  Wishing you all health and happyness.  Puppylove5

RanMan
Veteran Member


Date Joined Feb 2003
Total Posts : 665
   Posted 9/21/2004 10:53 AM (GMT -7)   
Puppylove5:
 
Welcome to the board. We share similar problems.
 
I don't know if I can help but at leaste we can share stories.
 
Have you been able to reduce some of the stress in your lifestyle both at home and at work?
Do you have side effects from your meds?
Do you drive? I had my drivers licence suspended because of the EP?  (whole different story)
 
Randy

Daisy9980
Veteran Member


Date Joined Sep 2004
Total Posts : 775
   Posted 9/21/2004 11:00 AM (GMT -7)   

Hi Randy.

Currently I live in NY and it is not a mandatory reporting state.  I myself have chosen not to drive for a while until my seizures are controlled.  The med for E make me very sleepy, drowsy, cranky and dizzy.  I have only been on them 3 weeks and the side effects are starting to level out.  I have no adverse reactions to my dicyclomin or aciphex.  Just can "feel it" if I don't take it.  I forgot my seizure meds one night on my birthday and had a nocturnal seizure.

I believe stress is a major issue and factor with all of my illnesses.  I am not sure if this site has private messaging or not, but if so, please email me and we can talk some more.  Right now I am kind of a floater with work.  I have always been selling on ebay.  That is great because I can do it from home and get rid of alot of junk tongue .  I was scheduled to start full time school this september, but with the seizures and AED's the timing was very off, so I had to postpone until next year.  sad

I am loving this forum so far and hope to talk to you soon. 

Puppylove


AARONSMOM
New Member


Date Joined Aug 2004
Total Posts : 19
   Posted 9/21/2004 11:19 AM (GMT -7)   
Hi Randy,
I was curious about phenobarb,this was the first med my son as given for 4 yrs and I was then told that it had that many bad side effects for speech and the development of the brain,they have vertially stopped using this med.After 14 yrs of uncontrollable seizures,last month the professor
video-monitored him for 5 days and nights connected to EEG,and other major tests,have come to me with 2 suggestions.One was to try him on a med he took when he was 5 which he responded for a while,and the other was to have a vagus nerve stimulator,he did not qualify for surgery.
It has been over a month since we got back,and it is very hard when they take him off all his meds to see as many seizures as possible and send you home with a hand full of meds!Anyway
he was seizure free for 3 weeks,I was very nervous and scared to see what was going to happen,was there going to be a very bad one coming up or???just didnt know ,to my surprise he had one of his normal generalised 1min seizure,and hasnt had another?? I dont know how to take this since he was having at least 2-3 regular ones every day,do you think its still the honeymoon period so they call it?
ISHIK


RanMan
Veteran Member


Date Joined Feb 2003
Total Posts : 665
   Posted 9/21/2004 12:27 PM (GMT -7)   
Puppylove5:
 
Did you happen to read my previous posts on this thread re Long term use of the meds, side effects, paranoia etc.
All my EEG's show lower tempral lobe epilepsy and for that reason alone, I have to stay on the meds.
I've had EP (diagnosed) for 25 yrs. and have driven since 1970 with no problem until Dec/02.(had an incident happen to me in the Wal-Mart parking lot and had my licence suspended)
That just goes to show that I am still vulnerable to siezures and they can strike you at any time and when you leaste expect it, usually AFTER a stressful situation.
 
BTW This board does have a private messaging system, just go to the bottom of this thread, click on

RanMan
Veteran Member


Date Joined Feb 2003
Total Posts : 665
   Posted 9/21/2004 12:35 PM (GMT -7)   

Puppylove5:   cont'd

submit reply, then at the top of the page it says member list.

From this list you can get my e-mail address as well as add yours.

Randy  


Daisy9980
Veteran Member


Date Joined Sep 2004
Total Posts : 775
   Posted 9/21/2004 3:03 PM (GMT -7)   
Thanks Randy and Jen. I was having alot of trouble on another "neurology" website. People over there are just having way too many "thread wars" I am too sensitive to get all wrapped up in that stuff. Jen, I am glad I am here too. Thanks so much and Randy I am going to email you soon. I was trying to stay incognito for a while till stuff blows over at the other site. I have people basically Stalking me and harassing me over my personal decision to post pone nursing school ect. They may find me here, but I am confident Jen won't let people attack each other here. Best wishes and will email you tonight.
Puppylove5

DBG
Regular Member


Date Joined Sep 2004
Total Posts : 235
   Posted 9/22/2004 8:48 AM (GMT -7)   

Hi Randy, stress and sz's go hand in hand with me.  I'm stressed cause i'm having sz's and i'm having sz's cause i'm stressed out.  Unfortunately i'm raising 3 little girls so eliminating stress from my life is next to impossible.  So, puppy, since Jenn is watching out for you does that mean I get to take off my boxing gloves? :-)  


Daisy9980
Veteran Member


Date Joined Sep 2004
Total Posts : 775
   Posted 9/22/2004 9:51 AM (GMT -7)   
Oh DGB lets sure hope so!!!

kayakmom
Veteran Member


Date Joined Jul 2003
Total Posts : 585
   Posted 9/23/2004 7:57 AM (GMT -7)   
Puppylove, I am so sorry that you were mistreated on another site!! Only you can decide the right path for yourself right now....Hang in there!! Hoping that you can get control over the seizures soon and go on with whatever you want to do....

Daisy9980
Veteran Member


Date Joined Sep 2004
Total Posts : 775
   Posted 9/23/2004 8:52 AM (GMT -7)   
Thank you so much.  Epilepsy is just so frustrating when you do not have seizure control. I know my parents feel helpless watching what I go threw. Sometimes I don't even tell them if I suspect I had one in my sleep. But somehow my mom always knows by the look on my face when I get up. My head is throbbing really bad this morning. Never had it like this. I may actually take some IB profin. I hate to take meds. I take currently 4 meds overall everyday for other ailments. Keppra is one for my seizures. Errr. Well best wishes to you and thanks for the warm welcome!! PPL5

RanMan
Veteran Member


Date Joined Feb 2003
Total Posts : 665
   Posted 9/23/2004 10:59 AM (GMT -7)   

Puppylove5,

Are you sure you can take IB Profin for your headache if you are already on seizure meds as well as other medsfor your  ulcer problems and your reflux and/or what ever else you might be on??

You better check with your doc on that first because I was told (and experienced myself) internal bleeding or nose bleeds from most headache meds exept Tylonol. That's the only one that I can take that doesn't react to my seizure meds.

I can't take aspirin, IB Profen, Advil, Exederin or Motrin, just Tylonol.

I took 2 Advil once by mistake and had massive nose bleeds that wouldn't stop. At the time I didn't think it had anything to do with the meds then it happened again just a couple of days before I had to see my neurologist. I happened to mention this to him and he was very concerned and said that I was lucky that I didn't bleed out through my stomach.

This is more of a problem in my case because I also take meds for my ulcerative colitis. 

If you are taking an anti-seizure medication, you should definately not take any cold or flu medications that contain DECONGESTANT or it can have a negative reaction.

Regards

Randy


Post Edited (RanMan) : 9/23/2004 12:05:58 PM (GMT-6)


TerriGard
New Member


Date Joined Apr 2005
Total Posts : 16
   Posted 5/5/2005 12:50 PM (GMT -7)   

Randy,

I have a 3 year old daughter who was diagnosed with Crohn's disease at age 2.  Now, out of the blue, she has developed a seizure disorder.  Her EEG showed "generalized" seizures and now, she is having many, many petit mal seizures a day.  I am not scrambling to pick between Depakote and Lamictal - or the best of two evils.  Luckily, she is on no meds for her crohn's now, as her cd is being controlled by elemental formula pumped through an ng tube (she does not eat or drink, just gets the formula)  I am responding to your post because I have come across a number of people with IBD and seizure disorder.  My 3 year old does not have much stress in her life, so I really believe there is a connection between IBD and seizure disorders.  I was dx with CD at age 16 and had a seizure disorder (not as severe as my daughters) develop as well.  When I had my colon removed at age 20m the crohn's disappeared and the seizures.  makes you think...

By the way, any thoughts on which med would be better for a 3 year old?

take care,

Terri


RanMan
Veteran Member


Date Joined Feb 2003
Total Posts : 665
   Posted 5/5/2005 1:15 PM (GMT -7)   

Terri,

Your reply is most interesting because it is more proof that CD and EP are connected.

BTW I can't help you with your question about the meds for a 3 yr old.
It will be hard and time consuming to find the correct coctail of meds that will work together for both conditions.
 
TALK TO YOUR DOCTOR
 
 
 
Randy
Diagnosed with epilepsy and ulcerative colitis in 1979,
Been on meds ever since.
 
275mg-dilantin/day
120mg-pheonobarb/day
3,000mg-Mesasol/day
20mg-Celexa/day


ShakinMommy
Regular Member


Date Joined Apr 2005
Total Posts : 29
   Posted 5/5/2005 2:33 PM (GMT -7)   
Hi RanMan,

I hear you. I am sorry for what you have gone through. Stress is a major issue in our culture. It is a killer. Check out this Book :"Full Catastrophe Living" and "Whereever You go, there You Are" by Jon Kabat Zinn. He was the Director of the Stress Management program at UMASS Medical Center. He has developed Mindfulness Based Stress Reduction techniques that help many people with the worst medical conditions. It really helps!

Chassie0315
Regular Member


Date Joined Apr 2005
Total Posts : 25
   Posted 5/23/2005 3:52 PM (GMT -7)   
Hi,
Stress has played a big part with my seizures. I've been on depakote for about 7 weeks now, and had ALOT Of side affects. For a person that don't drink, it has inflamed my liver. I also, for a week now, had flu like symptoms. Vomiting, nauseaus, achy, tired, etc.


Went to the doctor today, and we now will try Topamax. I hope the only side affects with that is weight loss :D

Driving for me, just doesn't happen often. I normally have someone driving, but thats not to say I don't get behind the wheel here and there.
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