Scottish newbie. Here on behalf of my mother.

[Falcon]

I'm in Scotland and posting on behalf of my mother who isn't quite computer literate.
I'm hoping that we can both benefit from this forum as this is all very new to us.



My mother hadn't been quite right for a few months, experiencing a sense of dissasociation,memory problems at times, deja vu and smells and tastes and colours seemed to be incredibly intense.
She continued for some time but,in June, went to her doctor who diagnosed her with anaemia,having no explanation for the above symptoms, and gave her iron tablets.

3 days after that visit my mother returned from night shift feeling very unwell and completely exhausted. She slept for far longer than is usual and had what appeared to be an absence seizure,lasting approximately 10 minutes.
A doctor was called who examined her and arranged transport to hospital.
She spent 8 days there and while there a lumbar puncture, ct scan and eeg were carried out. All were clear though the eeg did apparently show a slightly unusual sleep pattern.

She saw a neurologist two weeks ago who said he had no idea what her symptoms were, but that he didn't believe she had epilepsy. He arranged for blood tests, another eeg and an MRI to be carried out between August and September.

She returned home still displaying many of the symptoms, and saw her neurologist a few weeks later.

Then last Thursday she had a grand mal seizure. An ambulance was called and she was admitted to hospital. She had a further absence seizure while in hospital, lasting about 4 minutes, but was discharged in the evening on a low dose of Lamotrigine, after the hospital contacted her neurologist.

Since then she hasn't improved and today has been worst of all. She believes that she took another absence or partial seizure today and felt much more ill and disorientated today, becoming very distressed as a result.
We called the dr out again who is going to speak to her neurologist tomorrow and possibly have her admitted to the hospital that he is based at.

My mother is a support worker, who deals with people who have epilepsy but neither of us ever imagined quite how ill it can make one feel, or the emotional toll of feeling so ill, and of losing the ability to drive, and we're just beginning our journey.

We're both hoping to learn a lot from epilepsy forums about living with, and controlling epilepsy, and to have a place to vent when necessary.

 

[dfwtexas]

Welcome! I got diagnosed in 2008 at age 47 and was at a total loss until I found this place. It is a great place for support, answers and just venting. Gosh, the symptoms sound so much like seizures, I am surprised that none of the doctors are giving her information about it. Can your mom go to another neuro? There are a lot of people on here that were misdiagnosed or not treated correctly and had to find another doc. I know seizures are so frustrating in themselves....but when you can't get treated because docs don't agree...it must be overwhelming!
Jenn

 

[Falcon]

Thankyou for the welcome.

My mother is 48.

I think the doctors are beginning to change their minds about it not being epilepsy, if only due to her having a grand mal seizure, but it's still going to be a frustrating wait to have her officially diagnosed.

When she had her first absence the doctor who visited her at home mentioned the possibility of epilepsy,though since then,until her grand mal, all other doctors seemed to discount it as possibility.

They are going to try to bring her MRI,blood tests and EEG forward so we're hoping to hear from the neurologist soon.

 

[Nakamova]

Wow. Both the doctor and the neurologist dropped the ball on this one. It's good that they did the preliminary tests, but then it sounds like they ignored her actual clinical symptoms!

FYI: In general, Lamotrigine takes time to work, and is tapered onto fairly slowly, so it may need more time and/or a larger dose to be effective. (or it might not be the right drug in this case).

I hope you and your mother are able to get good care ASAP, so that she can start feeling better. There's a lots of support/info here so keep asking questions.

Good luck,
Nakamova

 

[Falcon]

It may sound silly but in spite of knowing quite a bit about epilepsy I'd never realised how dramatic a grand mal looks. My mother turned blue and grey, she looked like a corpse.
She was bleeding badly from her mouth, and making the most awful noise, which seems to be the result of breathing through clenched teeth, blood and saliva.
We thought that she was dying and I can't get that image of her like that out of my head. Everytime I enter the living room, even at night when everyone is sleeping. I keep expecting to find her in the middle of a seizure.

 

[Meetz1064]

Hi there

Falcon, and welcome to CWE. You've found a great place to land and find help at.

Make sure that your mother starts an E journal in order try to figure out what her triggers are--be it stress, diet, lack of sleep--whatever. You'd be surprised what the triggers can be....

I have a nice little, ahem, list of what to put in one if you want it. And Nakamova's right about the Lamitrogine. It's a great drug, don't get me wrong. I've been on it once before, with GREAT control, and am going back on it again, now. But the titration is SUPER-SLOW. I went off of it because there was an interaction going on between it and another drug, and the doctor opted to pull both.

And do remember that your opinion counts, too, not just the doctors. So speak up, and have your say. :soap:

Take care, and good luck.

Meetz
:rock:

PS. No, that doesn't sound silly. It's a scary thing to watch, especially the first time, and a loved one at that. Please be sure to go to www.epilepsy.com and check out the first aid section so that you know exactly what to do the next time, OK?

 

[Falcon]

Falcon, and welcome to CWE. You've found a great place to land and find help at.

Make sure that your mother starts an E journal in order try to figure out what her triggers are--be it stress, diet, lack of sleep--whatever. You'd be surprised what the triggers can be....

I have a nice little, ahem, list of what to put in one if you want it. And Nakamova's right about the Lamitrogine. It's a great drug, don't get me wrong. I've been on it once before, with GREAT control, and am going back on it again, now. But the titration is SUPER-SLOW. I went off of it because there was an interaction going on between it and another drug, and the doctor opted to pull both.

And do remember that your opinion counts, too, not just the doctors. So speak up, and have your say. :soap:

Take care, and good luck.

Meetz

:rock:

I'd really appreciate that list when you have the time. It'd be very useful.

We contacted Epilepsy Scotland who are a wonderful charity and were very helpful. They've sent us out all of their leaflets as well as the forms we need for her free prescriptions and free bus pass.

They've sent us a seizure diary too,but I want her to carry one with her at all times so that if she has a seizure outside the paramedics can read it, and one at home for our use and again to keep nearby should a hospital trip be required.

 

[Meetz1064]

OK, here it is.

It's a bit detailed, but it really needs to be. Also, some people do *blushing* keep track of their bowels because they find that their seizures are triggered by the movements (or lack thereof).

*************

1. Sleep. List how much & when.

2. Eating. List how much, when & what. It's possible to have seizures caused by allergies to food.

3. TV/computer/video games. Yup, they can affect you if you're photosensitive, so list when, what, and HOW LONG.

4. Menses (for women). Start tracking your cycles. CATAMENIAL epilepsy does exist, sometimes it's tied to ovulation, sometimes its right at the TOM. Also, LADIES, DO get a thorough check of ALL your hormones done—female, thyroid, and any others. Believe it or not, they do factor in on seizures.

5. Stress List when it occurred, and what happened.

6. Exercise List what you did, when, and any reactions.

7. Seizures/auras. If you have either, DOCUMENT THEM. Auras--note what they're like--do you smell or taste something that others don't? Hear something? Seizures--how long, when, where, what happened. If you don't KNOW what happened, get eyewitness accounts when possible and DOCUMENT THEM.

8. Smoking and alcohol. Ditch them--both are neurotoxins for our brains.

9. Meds (of ANY kind). List the dosages, and when taken.


Responses to the Above List

1. You MUST get 7 to 7.5 hours of sleep as a MINIMUM, no ifs, ands or buts about it.

2. Eating--one of the other mods, Skillefer, (we call her Skilly), promotes eating 6 small meals a day, using a dessert plate, filling it with a carb and a protein. Good idea, I think. However, some people, like me are allergic to certain foods. You might want to look into various diets. Ketogenic, Modified Atkins, Low Glycemix Index, Gluten Free Casein Free (see www.dogtorj.com).

3. Look into a glare screen for your computer or blue tinted polarized GLASSES (available by prescription from eye doctor). These can help cut down on seizures that are caused by photosensitive epilepsy.

4. GUYS--you may not have a cycle, but you DO have hormones. DO get your doc to do a full hormone screen, check thyroid, etc, just to make sure.

5. Use things like yoga, music, walking, whatever it is that you do to bust out your stress. Keep a separate journal to write in so that you can write out your feelings in--and keep it for your eyes only. Write it out by hand, two or three pages at a time. It helps A LOT. DO IT EVERY DAY.

6. REFLEX E can be caused by exercise, so DO track what you do. Keep in mind that you SHOULD NOT swim, bike, hike or bungee jump by yourself. Same goes for mountain climbing.

7, 8 & 9. 'Nuff said.

OK, the journal IS a pain in the arse. No doubt about that one. BUT it DOES help the doctors track things down.

*********************

Good luck with everything, Falcon, and have your mother come join us if you can teach her the computer!

Feel free to ask questions, we'll do our best to answer them, if we don't know the answer, we'll certainly do our best to point you in the right direction.

Check out the Library and the Kitchen--they have TONS of information, and RobinN and Zoe are the nutrition gurus around here. The Padded Room is around for when you really need to vent--and trust me, we've all been there at least a time or two!

Kick up your feet, sit and read, digest this list, and join in. We'll be here for you. No matter what!

Meetz
:rock:

 

[dfwtexas]

I have been on seizure meds since May 2008 and it has taken awhile to adjust medication to be the proper levels. However I did see immediate improvement in both the frequency and the severity of the seizures. I do think the most helpful part of my treatment is having a neuro that listens to my concerns and that I have confidence in. I have a 26 year old son that lives me and is very involved in my care. That goes a long way to help me. I think it is great that you are being proactive in your mom's care too. I know my father had 2 seizures (one grande mal and one tonic) when he was 47. When it first happened and saw an ambulance in the neighborhood...I would follow them to make sure it wasn't going to his home. I never saw my father's seizures but had seen others having grande mals and it is very upsetting.

 

[Falcon]

Thankyou for the welcome Nakamova, and thankyou for the list and welcome Meetz.

We'll use the list to keep a very detailed diary. The first time my mother had her absence she had just came off night shift, which may have been a trigger. She took her grand mal one day before she had a period so that I think is likely to be another trigger.

She does seem to be going through the peri menopause which I think may have started all of this.

 

[Falcon]

I forget to mention the cat's role in this. My mother took her grand mal early am, before anyone else was awake.
When she went into a seizure our cat ran upstairs screaming his head off, burst into my grandmother's room still screeching, she thought he wanted out, he ran downstairs she followed him, she went to let him out of the front door but he insisted that she went into the living room, and ran in there to find my mother in the middle of her grand mal.
He went back upstairs once he saw my grandmother attending to her, knowing he'd done his job. He deserves a special treat for that.

 

[Nakamova]

That's some cat! I've read about pets getting help for their seizing owners, but only if they'd been trained to do so. Special treats indeed...

 

[dfwtexas]

I have a dog, Rosie, that has slept with me since the day I got her 5 years ago. In May, I had a seizure in my sleep. My son said Rosie was barking her head off and he just thought I would take care of whatever the problem was. When he didn't come to my room, she went to his room and made sure he followed her into my room. By that time, I was sitting on the floor trying to figure out what happened. They say that we emit a smell that animals can smell when we are seizing. I was so proud of my Rosie!

 

[Meetz1064]

I know

that there's a way to train DOGS to be seizure alert animals, but I wonder if there's a way to train CATS?!?!?!

 

[Falcon]

that there's a way to train DOGS to be seizure alert animals, but I wonder if there's a way to train CATS?!?!?!

I'll consult my cat and get back to you on that. Perhaps he could set up a training school.

 

[Meetz1064]

LOLOL.........Yes,

PLEASE DO. They could be an INVALUABLE resource, you know........:bigmouth:

 

[Cornczech]

My cat will be one of the first students!!
I too am a late bloomer, with regard to my seizures. ( I am 43 in October). Have had 1 abnormal EEG when in hospital/ER during a seizure....2 NORMAL EEG's and I am having a 3 day in-hospital EEG next week, (I am sure all for nothing too....though this dude I am seeing at UCMC "promises" he will find the cause of my seizures...we'll see). Good luck with your mother! I have had, (thus far) 3 grand mal seizures, 3 "major" partials (I was aware but unable to respond in any way or control my body) and a MULTITUDE of small "attacks" auras and other weird things....all since March, (well...the auras without seizures...for about a year or so...another story). I have taken 3 different meds...been med free, (yes, I am stubborn and probably stupid), for about a month and a half now...and I swear my seizures have been less...anyhow....I am rambling...
Good luck with your ma and keep plowing ahead, as they say....don't let ANYONE make your mother feel as if she is superficial, faking or ANYTHING in that category....not ever.

Ciao! d(-_-)b