Epilepsy & Seizures Support Group
Epilepsy (often referred to as a seizure disorder) is a chronic neurological condition characterized by recurrent unprovoked seizures. It is commonly controlled with medication, although surgical methods are used as well. Seizures (or convulsions) are temporary abnormal electrophysiologic phenomena of the brain, resulting in abnormal synchronization of electrical neuronal...
Hi,
I have posted a while ago & been "lurking", reading posts but not commenting.
I have had all sorts of tests including 5 days monitoring by eeg & video monitoring. That showed me having seizures, both the abscence & what they said was grand mal. The eeg showed nothing at all so it was confusing for neuro.
He has put it n to the seizures being caused by the ms & hemiplegic migraines.
I have got a lot of health issues including ms (which I cant take the injections for), this is getting worse & now using walker, scooter & waiting on a power chair to get here to use that. Have also got asthma, excema, diverticulitis, ibs, allergies, kohlers disease in feet (basically causing the bones to disintegrate & collapse), sinus issues that have been operated on 2 times & now one side of nasal passage has collapsed again so only breathe through one side. Last time in hospital got dbl pneumonia & hospital acquired infection (superbug), cushings disease from cortisone usage. Have a permanent catheter (ms & collapsed bladder again after surgery to fix so no control - called grumpy bladder).
Reason I put that in is because of all these health issues & medications for them the neuro wouldnt give me anything specific to treat the epilepsy. Sometimes nothing happens for a while & then I will have several in a day or 2.
Have kept journal & cant work out what is causing them. We think fatigue, esp brain fatigue may be contributing & wondering if heat could be a factor too as I seem to get more, esp the absence ones on hot days or after hot days. When ms is playing up or symptoms getting worse hubby has noticed I seem to get a lot more of different seizures too.
We are about to go on a big holiday & wondering what we should do to try to minimise/keep safe with them. I am using a walker that is also a wheelchair.
We are going on a cruise that goes from Sydney (Australia) to a couple of ports in Aus, then Bali, Hong Kong, Japan, Taiwan & china. It finishes at beijing, we are spending a night there then 3 nights at Hong Kong on the way back. Have got all the meds we use & letters from dr etd.
Was not worrying about epilepsy side of it as it seemed to settle then the last week I have had several absence seizures & also a bad one at night where I spasmrd really badly (dont remember as asleep but hubby does) & woke up really sore. My back spasms as well as legs & arms which means that I hurt all over & struggle to move afterwards. Also very vague following any of them & can get confused very quickly & struggle to make decisions.
We are concerned now as dont have the epilepsy documented although have been told it is that.
Is there anything we should be careful of with travelling more than usual?
Sorry about long post, thought should put it all in one so can understand more hopefully.
Thanks for reading & any advice will be appreciated. We actually leave home on Saturday (5 days) so not long to go & cant see neuro in that time.
I have posted a while ago & been "lurking", reading posts but not commenting.
I have had all sorts of tests including 5 days monitoring by eeg & video monitoring. That showed me having seizures, both the abscence & what they said was grand mal. The eeg showed nothing at all so it was confusing for neuro.
He has put it n to the seizures being caused by the ms & hemiplegic migraines.
I have got a lot of health issues including ms (which I cant take the injections for), this is getting worse & now using walker, scooter & waiting on a power chair to get here to use that. Have also got asthma, excema, diverticulitis, ibs, allergies, kohlers disease in feet (basically causing the bones to disintegrate & collapse), sinus issues that have been operated on 2 times & now one side of nasal passage has collapsed again so only breathe through one side. Last time in hospital got dbl pneumonia & hospital acquired infection (superbug), cushings disease from cortisone usage. Have a permanent catheter (ms & collapsed bladder again after surgery to fix so no control - called grumpy bladder).
Reason I put that in is because of all these health issues & medications for them the neuro wouldnt give me anything specific to treat the epilepsy. Sometimes nothing happens for a while & then I will have several in a day or 2.
Have kept journal & cant work out what is causing them. We think fatigue, esp brain fatigue may be contributing & wondering if heat could be a factor too as I seem to get more, esp the absence ones on hot days or after hot days. When ms is playing up or symptoms getting worse hubby has noticed I seem to get a lot more of different seizures too.
We are about to go on a big holiday & wondering what we should do to try to minimise/keep safe with them. I am using a walker that is also a wheelchair.
We are going on a cruise that goes from Sydney (Australia) to a couple of ports in Aus, then Bali, Hong Kong, Japan, Taiwan & china. It finishes at beijing, we are spending a night there then 3 nights at Hong Kong on the way back. Have got all the meds we use & letters from dr etd.
Was not worrying about epilepsy side of it as it seemed to settle then the last week I have had several absence seizures & also a bad one at night where I spasmrd really badly (dont remember as asleep but hubby does) & woke up really sore. My back spasms as well as legs & arms which means that I hurt all over & struggle to move afterwards. Also very vague following any of them & can get confused very quickly & struggle to make decisions.
We are concerned now as dont have the epilepsy documented although have been told it is that.
Is there anything we should be careful of with travelling more than usual?
Sorry about long post, thought should put it all in one so can understand more hopefully.
Thanks for reading & any advice will be appreciated. We actually leave home on Saturday (5 days) so not long to go & cant see neuro in that time.
Well, I say stay away from the Gaurdrails on the ship & Enjoy.
But, your question: It wouldn't matter if you started taking meds today, tomorrow, whatever. For seizure control they need to build up in your system for 4-6 weeks. It would/mite take that long to get over any possible side effects, also! So What to Do? I would print up a small leaflet real quick w/ Proper seizure First Aide procedures & carry it w/ me at all times! I would (Proudly) wear an Epilepsy Medic Tag. Up to you. Bracelet or necklace. Not sure where you could purchase one that quick though. :( Do you have anyone that engraves in your town? No? Well How about a Paper inside a plastic shield w/ info. Written up Like a Baggage ID or Army ID? Again, on a necklace, it could be discreetly worn under clothes, but, Cruise MD would find it. :) If necessary.
Avoid your Trigger. If Feeling Warm, Ql down somehow, ASAP. Small personal Fan (hand-held w/ water sprayer? ) But, I guess there is no way to stop MS flare-ups. :(
Hon, your seizures will happen at home or on cruise. So, Do anything, everything you normally would. Get Proper rest, Eat well, etc. As long as your seizures aren't over the 'normal' time limit 2-3min., I believe you will be just fine. :)
ENJOY!
Love Candi
We are redoing the insert inside my sos necklace that I wear all the time. That has medical conditions & medications on it so will get hubby to put epilepsy on it too so that will cover it.
This is a gold necklace with sos on the front & it screws open & has a piece of paper that concertinas into a small bit that fits inside & it is waterproof.
Thanks for the info & ideas.
Will enjoy the cruise for sure.
See ya when ya get back? I hope so! :) I wanna hear how ya did! :)
Love Candi