Beyond Medication

Comment

Comment by Tim Ulmer on May 12, 2011 at 2:31pm

If someone has a VNS, please tell me what it's like to have that lump buried in your breast and if it get's uncomfortable and looks ungainly.  I understand all about the hoarseness, but I want to know about these other questions.  Thanks.

 

Next week I'm going into Piedmont Hospital in Atlanta for observations and they'll try to provoke 2 or more seizures from me when the usual rate is 1 ever week or so.  Those observations will help determine how good of an alternative a VNS is for me.

Comment by Kari Lynne Brauer on May 12, 2011 at 11:05am

Good Morning Everyone!

I hope this finds you all well. Spring is finally on it's way here! Tim I hope things have worked out with your VNS and your daughter. You all take care!

Blessings, Kari

Comment by Tim Ulmer on April 6, 2011 at 1:47pm

Hi Folks,

I have complex partial seizures, 1 every 6-7 days.  Sometimes people don't even realize it's happening.  I've been displeased that we couldn't find the right drug combo, but I'd rather try that than do a stimulator or surgery.  However, I'm now the father of an infant and I'm worried what I might let happen to her if I'm "out of it".  So now I am looking at a VNS.  Do any of you have one and does it help you if you normally don't have auras?  (I seldom have on, and it lasts no longer than 1-3 seconds if I do.)  Thanks.

Comment by Richard Alvord on March 8, 2011 at 8:58pm

Hi,

What I am trying to do is help by asking people to sign a petition on Change.org that helps improve epilepsy treatment.  The link is below.  You will have to join, possibly search for "epilepsy" and sign.  No cost.

http://www.change.org/petitions/support-use-of-modern-technology-to...

 

Comment by Kari Lynne Brauer on July 27, 2010 at 11:53pm

Have you asked your dr. about taking Tylenol PM. or Benedryl ? I take them an hour before I go to bed, now I sleep like baby.

Comment by Judy Pfeifer on July 27, 2010 at 1:26pm

Hey all, I'm having TERRIBLE time getting to sleep and staying asleep. I'm on lamotrigine and zonisamide , but my Neuro said the zonisamide med was suppose to make me sleepy so take it at night. So of course I do and follow close to my doctors orders. But the not sleeping well and not very long start getting to me and I'm having up to 5 or 6 auras a day...I had 7 seizures almost two weeks ago, but I wasn't on the zonisamide then. So it's all the lamotrigine. I'm not a tea drinker. I do either listen to music or an audiobook to fall asleep which I was doing even before I had sleeping problems. I used to sleep very well. I'm only drinking maybe 1 cup of coffee a day, and maybe a little cup of soda. So caffeine can not be the problem, I used to drink like 4 cups of coffee a day and still sleep like a baby. I'm afraid if I keep going the way I am then I going to end up having more seizures because I'm so tired. Though I have no clue what my triggers are.

Comment by Carl B Ross on June 24, 2010 at 3:35am

Bethany,

I have a few hypnosis downloads I can share, otherwise they can be rather expensive. My father is also a medical Hypnotherapist and has done a sleep hypnosis I find very effective, I was skeptical at first because it's my own father and who listens to their father?? there are literally thousands of hynosis downloads out there, the ones My father uses are from a site out of england where there is a more clinical approach and more widespread use. With your permission I'll share this with him and he can better inform you of what he can do for you. I'm sure at the very least He'll have no problems with me sharing the relaxation hypnosis he wrote. He's even done them over skype.


peace, carl

Comment by Kari Lynne Brauer on June 22, 2010 at 9:39am

Bethany,
I take Keppra also. I also have a hard time sleeping as well. I take Tylenol pm a hour before bedtime and have cup of herbal mint tea, then do something quiet for that time. this helps me to relax and sleep more peacefully and I, like you do not wake up anymore with a racing heart or in a sweat from having seizure while I am sleeping. The price is cheaper and it does not bother the Keppra. I am waking up now more energized and ready to take on the day! Hope this helps you Bethany.
Blessings, Kari

Comment by Bethany Hahlbeck on June 21, 2010 at 11:58pm

Hi Carl, i just joined the group. I have a horid time sleeping. My Dr. wants me to stay up til midnight and get up early to reprogram my brain but its not working. She also has me on zoloft which i take before bed. I dont know if its Keppra or just my brain activity.when i do doze off i wake up in a total panic, drenched in sweat, heart racing and disoriented,those things frighten me because i often have those same feelings before a seizure. I am not in control and your right, its tough to handle. Im interested in hypnosis. Lack of sleep is a main trigger for me.

Comment by Carl B Ross on June 21, 2010 at 10:43pm

I've been struggling with breakthrough symptoms, and panicky auras over the past few weeks and having great difficulty getting to sleep even with trazadone. something I'm finding quite helpful is hypnosis. Psychologically it takes a lot from you when aren't in control of your symptoms. the hypnosis really helps take the edge off and help me get to sleep. there are numerous recordings from self esteem, to sleep

• ‹ Previous
• 1
• 2
• Next ›
• Page