New to E - same old symptoms... just re-named

[JanieNut]

I recently asked my boss for a new monitor – my migraines are constant and I know one of my big triggers is an old monitor. My boss asked me to get a doctor’s note so he could push it through faster. I said ‘No Problem! I need a new Rx for migraine meds anyway.’ Boy was I surprised when the Neuro said I didn’t have Migraines or Fibromyalgia (huh? I have had that 10 years!) – but that I have Epilepsy and the after effects of seizures. “Matter of fact you most likely have had it all your life and all those doctors have missed it up to now.”

Ok, so there was that time we went to Wal-Mart and I got dizzy and a big migraine and could hardly see and I tried to go to the car and wait for my husband and I couldn’t find the car about three weeks ago. Sure, right, 20, 30 doctors have missed it. Right. (Ex-military family – the # may be higher) But, as the neuro had suspended my driving privileges I went back for an EEG –
That is when I really had to admit he was right. I had over 20 seizures while the EEG was running. Ok, I said, I accept my fate. My brain is cross-wired. Now what? Oh – just take these meds and you should be fine in 3 weeks, we hope. Not so my friends. It appears that I have a serious drug sensitivity. I have been through 3 and they all made me react in totally different ways. None of which were fun for me or my family. Let’s just say I lost about 3 months of my life to a drug haze of crying, screaming, throwing things, numbness so bad I couldn’t hold a fork (or breathe and I like breathing) , etc, etc. Now I am feeling better but I am not taking a full dose of seizure meds – so I basically feel worse than when I went to the neuro the first time. Why?

Well at the time I was on a higher dose of Neurotin for Fibromyalgia than I am now. Not to mention my headaches are worse since the drug reactions. I have a plan though. I am getting educated. I am not taking ‘I don’t know’ as an answer. I have two additional Neurologist appointments scheduled in the next month. ( Yes, additional, I am not leaving my first neurologist – just augmenting his help with super specialists.)

The 1st neuro deals with Headaches specifically and the next is a professor at Johns Hopkins who’s online bio says he treats people like me. Hope one of them works out. Complex Partial Seizures, constantly have a headache, always have trouble with lights and patterns, vision issues when the seizures get bad, and my favorite – the seizures are the cause of my issues with speaking and writing – Now I am beginning to have a identity crisis! I have always been a dyslexic! Who am I now that I don't have migraines, fibromyalgia, or dyslexia?

I am a KOI crazy 52 year old Female, Married, Mother of 3 adult kids & 1 teenager out to ruin my sanity, 2 grandkids, 10 koi, 5 goldfish, 2 dogs, 1 cat

Anyone else out there like me?

 

[RobinN]

What helped me with my migraines was taking ionic magnesium. My daughter takes 1000mg (per request of her neurologist) for her seizures.

Light always affected me when I was feeling a migraine coming on, but mostly bright sunlight.

I also learned while doing research for my daughters care, that migraines are now thought to be in the seizure family, not the headache family. Interesting.

I have a few koi myself, 53 yrs old, 3 kids,+ 2 foster, 2 cats, +1 foster and a member of CWE for almost a year. Welcome

 

[Bernard]

Hi JN, welcome to the forum. :hello:

... It appears that I have a serious drug sensitivity. ...

There are a few non-drug approaches to seizure control that you could investigate/explore (diets, neurobehavioral therapy, EEG neurofeedback). See the chart linked in my signature.

I am getting educated. I am not taking ‘I don’t know’ as an answer.

:woot: That's the kind of attitude that will help you succeed. Here's some good starting points:

http://www.coping-with-epilepsy.com/forums/f23/epilepsy-101-part-faq-part-tips-advice-1255/

http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

... always have trouble with lights and patterns, vision issues when the seizures get bad, ...

There are a lot of people who are photosensitive. Many find that special polarized/tinted glasses can help. LCD monitors are easier on the eyes than CRTs. HTH!

 

[skillefer]

Hi Janie! Welcome to CWE. We're a friendly bunch, and you have a great attitude. Like Robinn's daughter, I am also taking 1000 mg. of Magnesium. I used to have 2 tonic clonic (grand mal- you know, end up convulsing on the floor) seizures a month. Since I started taking the Magnesium, no seizures. I also take 3000 mg. of fish oil a day. (It supposedly raises the seizure threshold. ) You'll find that there are people here who take only meds as well as people who use alternative therapies. (some to the exclusion of meds, some as a compliment) Also, there are several members who also have fibromyalgia here. So you are definitely NOT alone. I agree with Bernard, it sounds like you're photosensitive. Try getting the BLUE polarized sunglasses. Just be careful, a lot of the ones that appear blue, are actually a grey lens with a blue coating. You actually need to get blue lenses. If you need to, check your eye doctor. I haven't tried it myself, but they claim it can cut the number of seizures by 50-80% in photosensitive people. And hey, we all could use a new pair of sunglasses, right? Anyway, check out the info Bernard and Robinn suggested. And again, welcome to CWE.

 

[JanieNut]

Hi all -
I will hang with anyone who likes Koi. but Robin your byline confuses me -
3 kids,+ 2 foster, 2 cats, +1 foster -- is the first foster kids and the second a foster cat? I foster my daughter's boyfriend - does that count?
Thank you all for your suggestions. I do have the BEST monitor on the market. (my boss spared no expense - he wants to keep me) It helps - if by helps you mean 'does not cause any headaches' - I wear sunglasses all the time when I am not at my desk - I am so glad that the big Jackie O glasses are back in style! I fit in again. I have the lights over my desk turned off. It drives the maintence staff crazy - they are always trying to fix them for me.

My daughter works at Wal-Mart Vision. I can have her make some blue glasses up for me. It sure is worth a try. And I wil give the magnesium an investigation. It sounds promising. I can't take the fish oil - severely allergic to fish - new allergy since my adulthood, darn it. It helps the brain in many ways and I have been lamenting the loss for a while. I have been looking for an acupuncturist near my house or my work - I live near a big city but just not close enough. I really am interested in the neurofeedback. I first read TAO as a 14 year old. I am positive I have the right kind of open mind. Only issue is there is not one nearby either. But I will keep looking.

I am going to gather up my information and meet with the two new neurologists and hope for the best. thanks for the welcome.

 

[brain]

:hello: JanieNut!

So sorry you've had to undergo all of this, but
eventually it does take time to get to the bottom
line of everything. It is NOT unusual for someone
to have multiple neurological problems where there
could be several issues that can or may be in factor.

I have multiple neurological problems - and Epilepsy
is included, it just makes things a little harder to
sort things out - which Medical Doctors deem it
as a complicated or complex case or uses both
terminology - "complicated and complex case" in
reference to that specific patient. But you are not
alone, there are many others out there who are
in the same boat. but it's not that common - but
they are out there; and the frustration in having
to deal with the neurological problems is great.
But patience is the key and keep on pressing on
and moving forward.

Finding an updated Epileptologist / Neurologist is
very important - as Neuroscience is advancing
and progressing and in addition are also seeking
alternative ways into treating such conditions.

Welcome to CWE and make yourself a home!

 

[skillefer]

Hey Janie! Since you're allergic to fish oil, you might want to try Flax seed oil. The thing is to get a combination of Omega 3 and Omega 6 oils into your system. Fish oil is just the most common. But flax seed is good, and tastes good when sprinkled on salads or veggies. Also, if you bake your own bread, you can grind it up and mix it in to your bread dough.

 

[RobinN]

Robin your byline confuses me -
3 kids,+ 2 foster, 2 cats, +1 foster -- is the first foster kids and the second a foster cat? I foster my daughter's boyfriend - does that count?

Yes we had two foster teen boys living with us, and our one year old cat just brought home an orphan cat we named Figgy. They were out this morning having a ball pulling up all the new bedding flowers I just planted yesterday. I could only stand back and laugh.

I can't take the fish oil - severely allergic to fish - new allergy since my adulthood, darn it. It helps the brain in many ways and I have been lamenting the loss for a while.

One thing that would get me thinking is why is my immune system out of wack that as an adult I am no longer able to eat fish. Something new going on here. Malabsorbtion issues that would have me researching this. Flax though is a good alternative I have been told.

I really am interested in the neurofeedback.
I first read TAO as a 14 year old. I am positive I have the right kind of open mind. Only issue is there is not one nearby either. But I will keep looking.

It is a fantastic therapy, and I am consistently delighted in the outcome.

 

[JanieNut]

Hi Robin,
Sounds like your house is a lot like ours. My 20 year old brought home her boyfriend - for keeps. He's a good kid. And about every 2 months my son brings home another friend who has been having trouble at home for one reason or another. They don't stay more than a few months - but it gives them a rest from stressfull situations (other than stress from living in our crazy house, of course)

My current neurologist wants me to see an Immuniolgist - but I am in a one track mode right now. When the BIG doctor visits slow down - that is next. So that is in the works.

Love the idea that you have a foster cat! My cat would not share his home, yard, or people. He is the ALPHA cat of all of our 2 1\2 acres.

 

[Zoe]

While you are checking out the migraine, why not also look into the amino acid, taurine? Its been researched and was a major factor in getting my complex partials to stop altogether. The labels, migraine or epilepsy may not mean a lot when you sit down and figure out what triggers your "spells," regardless what you call them. The visit to the immunologist may be helpful in finding out if you are reacting to something or have an autoimmune disorder.

 

[Georgiagirl88]

Hi Janie,

Wow..we will have to talk in further depth! I am actually on a trip in Florida right now. We have alot in common though. Especially being missed by multitudes of Drs./specialists (well over 30-40) and even told I was crazy basically. I knew that wasn't the case. I have been told fibro. have all the same issues with light, vision and much more. Chronic pain. So many things to mention. I would love to talk more. Read my original post, I may have mentioned alot of it. Can't remember. I am 41, married and we have 2 teenage children.
Glad you joined the group Janie! It is wonderful! We'll talk soon.

Michelle : )

 

[JanieNut]

Wow. Love all the responses - this makes me feel so much better knowing I am not the only one out here seeking answers - THANKS and I look forward to talking to everyone more.

 

[RobinN]

Been turning stones over for two years now.... looking for answers.
Think I can slow down the stone turning now.
Tomorrow is the two year anniversary of her first seizure.

 

[BuckeyeFan]

Welcome to CWE

JanieNut,

I love your attitude of not taking "I don't know" for an answer. Too often that is what we get along with a $100 charge. Keep up the research and fight.

You have found some of our great members here already and there are many more.

Please take time to relax here as well. Besides sharing information, this is a great place to vent, get emotional support, and take time to laugh (great medicine). You can even share in off topic issues in the lounge.

So have a seat and I will get the coffee. My specialty around here.

:cheers:


p.s. I have a sister named Janet. One of the great nieces has started calling her Aunt Jan-NUT. We sure have had fun with that. Your screen name made me think of that and smile.

 

[batman]

JanieNut, if you don't mind me asking you some details, I would like to find out what anti-epileptic drugs are you currently taking, along with all of the anti-epileptic drugs you were previously taking in the past.

For the anti-epileptic drugs you are currently taking... what are you taking? how many times per day are you taking those anti-epileptic drugs? What is the dosage amount for each and every time you're taking those anti-epileptic drugs? And how is your body responding to those anti-epileptic drugs at those dosage amounts (i.e., more or less seizures; side effects)?

For all of the anti-epileptic drugs you were previously taking... What medication did you take? When the doctor started you on the previous AEDs, what was the dosage amount, and how many times per day were you taking those anti-epileptic drugs? What was the overall result for when you were taking those previous anti-epileptic drugs (i.e., any allergic reactions, toxic or severe side effects; less or more seizures)? And did the doctor decrease the dosage amount below what they started you on, then keep you at that lower dosage amount for a while in order to see what the results would turn out to be, before switching you over to a different anti-epileptic drug?

The reasons why I'm asking you these questions is because there are a lot of people who don't know about the important details for the anti-epileptic drugs. And how I found out about the details is by attending the S.E.E. Programs (Seizure & Epilepsy Education), along with taking different anti-epileptic drugs myself.