Another Newbie

[EML]

Hi all
Been lurking, mainly in the hope of course that I find something that says I don't have epilepsy but some other rare undiscovered but curable neurological issue!

As it is, following a telephone consultation last week with Neuro he has announced that I have focal Epilepsy- just like that.

Bit of background - might want to get a biscuit and a cuppa or something!
4 or so years ago , got funny turn which put fear of god into me as of course I knew they weren't normal. I wasn't great at describing them to my GP then - said I kept seeing 'something' in my minds eye, accompanied by intense nausea and weird feeling. I soon realised on reading/recurrence that it was deja vu which I was able to state by time of 1st ever Neuro appt and advised i was concerned then it was SPS (classification has now changed of course to FO aware). Had CT scan also then too
He said at that time, it wasn't, and just atypical migraine. I do get migraines and did question it at the time but he stuck to guns, and advised to come back if they get 'worse'. Now he didn't say what worse was, or would be in his eyes. All in all a crap appt in retrospect

Over last year or so, been getting other neurological symptoms - not epilepsy related (lightheaded, facial pain , altered and sensory sensations) and finally resulted in another referral this year to Neuro - appt last week. Blood tests have shown positive GAD antibodies - no idea why GP tested for this, but no significance given to it re neurological issue. Anyway, appt last week and my concern is re MS. He wasnt convinced and when i was trying to explain that some of what I thought would be put down to migraine, or was putting down to migraine, clearly is not I the mentioned the appt years ago and same claims and one discussion followed another and he concludes that I was right, and have Focal Epilepsy. He states no testing needed (though am to get MRI anyway for other issues) and my personal account is relevant and sufficient enough

It is classic i suppose - deja vu , nausea, headachy after (hence migraine claims I presume) and latterly metallic taste in mouth. They have happened in clusters of around 4 each day, for 3 days at a time at most and then stop. Last year there were 3x days on 2 occasions. This year it has been 2 occasions so far, again in clusters for a couple of days. Before that i haven't a note, so am not sure if they did happen or not

He has said he will send prescription to GP for Lamotrigine, if I WANT to take it. He didn't answer my questions on prevalence from focal to generalised, as preventing progression would be only thing to make me consider taking meds.. He did say 7/10 people become seizure free He also says he understands grey area as they are so infrequent no problems with consciousness but hasnt really made much comment on risk /benefits r if i SHOULD take them. I am fairly sensitive to medication, come out in hives regularly for no reason ad already have dizziness, headaches and nausea so keen not to replicate these symptoms

I am feeling so lost and upset just now , i am waiting for MRI to see if there is anything that may cause the epilepsy though to be honest, outcome is same unless its another issue that can be 'sorted' in which case i have bigger problems. Also upset i might now have 2 conditions if all goes unwell....

. Wider and immediate problem for me is that DLVA (am in UK) will want license surrendered and take dim view of those who appear non compliant with medication. I appreciate Neuro cant unknow what he knows and of course most doctors will take view to 'treat' if they can. He did say he cant influence DVLA but of course he has, by prescribing medication but then saying its up to me, and understands why i wouldn't. I have had probably around 15 days in more than four years but of course it only takes 2 seizure to be a problem and get diagnosed. In that time i have driven safely, and do recall having SPS whilst driving on at least 1x occasion when i think back
Its also happened in front of people and apart from pallor change people cant tell - i have asked them if have done anything funny (eg checking for CPS)

I suppose if Lamotrigine had no side effects I may take a punt but as i say dont want to make things a whole lot worse

Sorry for long post - hope your tea isnt cold. Am feeling a bit bewildered just now. Also wondering if ongoing light-headedness is now E related. Sometimes i wake up like that though see no sign of nocturnal anything. Also get it at times of day when awake so trying to not to get paranoid

Thanks for reading x



Feel so frustrated and am going to phone his secretary this week

 

[Fedup]

Hi EML

welcome to CWE, unfortunately him prescribing Lamictal does not influence the DVLA but he should and if I am not mistaken it is also Law so he has no choice in notifying the DVLA I know in Ireland it can also mean jail but truth be told driving is not a something you should take lightly. What would happen if you were on the M1 or A1 ever passe one of those pile ups and say I hope nobody got killed. GAD antibodies is in regards insulin production. All anti epileptic drugs have side effects its really a question of what you can live with do not be mistaken life with epilepsy is no picnic but it does have its advantages.

 

[Nakamova]

Hi EML, welcome! Make yourself at home.

A new epilepsy diagnosis is very bewildering. It definitely takes awhile to get one's head around it. It can be tricky to figure out what's a symptom, what's a side effect, and what might be some other health issue. The ongoing light-headedness could be E-related, but sometimes it can be hard to tell. Make sure you are taking care of your overall health -- getting the best sleep you can, trying to stay away from stress, eating and hydrating properly, etc.

I resisted my epilepsy diagnosis for a while, though I took the prescribed break from driving (6 months where I am), and went on meds. I tried tapering off the meds a few times (under neuro’s supervision) with no luck -- always the seizures returned. Eventually I ended up on Lamotrigine, and I've been over a decade seizure-free -- I’m one of the lucky ones in that regard.

Everyone reacts differently to meds, so no way to predict what your experience will be. On the plus side, there are lots of E meds out there now, so if one med isn't a good match, there are others out there to try.

Keep asking questions -- not just from your doctors, but here at CWE too. Information can be helpful, and even more importantly, the knowledge that you're not alone.

Cheers!
Nakamova

 

[EML]

Hi both, thanks so much

I absolutely accept the diagnosis - as i say I thought I was having SPS years ago...but they said not. I am absolutely not cavalier re driving at all and fully expect to give it up for a time- though I need it for work so am gutted.

Think my wider issue is if I appeal it on grounds there has never been a loss of consciousness there is a section on following medical direction- when the reality is that ive clearly had Epilepsy for more than years, been unmedicated the whole time and Neuro is leaving it up to me with no real medical direction....

I am to have an appt in 8 weeks but its not actually for post epilepsy diagnosis/ medication monitoring but to revisit MS esque symptoms that are leading to MRI so assuming I get it before then its to discuss the MRI too
i already have T1 diabetes but those antibodies are long gone for that so i know they are also aligned with 5x chance of developing E.

Can I kindly ask re lightheadedness. Do you get this around seizure eg post ictal or is it an ongoing background symptom. Mines fluctuates but constant moreover less for months. Some days its worse than others

Thanks again for replying

 

[Nakamova]

My seizures are controlled now, but back when I was having them (they were tonic-clonics), there would be occasional lightheadedness that felt like a warning that a full-blown seizure might be coming. So, a bit like a partial seizure for me. But not a daily event like you describe.

 

[Nakamova]

Over last year or so, been getting other neurological symptoms - not epilepsy related (lightheaded, facial pain , altered and sensory sensations)

Altered and sensory sensations can definitely be epilepsy-related, in fact those sound like partial seizures. Best way to confirm of the lightheadedness is a seizure symptom would be to have an EEG.

Is the facial pain constant? Sharp? On both sides or just one side? Is it like a headache, or is it caused by contact with the face?

 

[EML]

It is mainly on one side, hence reason it feels like start of a migraine . It is dull. Occasionally there are sharp pains in my ear/feels like earache too. Facial pain is akin to Trigeminal Neuralgia I think on those grounds . Sometimes eating or drinking seems to set it off, but not other times . It lasts for an hour or so, other times it's been for most of an evening The altered sensations are pins and needles in both upper and lower body or buzzing sensation in feet. When they happen there are no other seizure like symptoms that accompany it Have had a good look at the detail of where seizures start, mines mostly seem temporal and I get some tingle in lip for seconds but that's only thing akin to anything frontal

I also have been keeping a diary and any pins and needles don't seem to come with anything else- often happen at night in bed but am not sleeping, just reading usually

I do feel a bit hungover at times though not drinking, and that is the feeling I can get post SPS . I think whats for sure is that something neurological might be going on that may well be the cause of the epilepsy.

 

[Porkette]

Hi EML,

Welcome to the forum! Just like you I started out having migraine headaches and then that led to absence and complex partial seizures for
me. I also have an Aunt who has passed away but she also had MS and there can sometimes be a connection between the MS and a person
starting to have seizures it all depends on the type of MS a person has.

Be sure when you are keeping your diary of seizures you write down what time the seizure happened and if there's a low pressure in the
weather because sometimes a low pressure can trigger seizures for a person because it effects the hormones in the body.

I took Lamictal for a short time the biggest problem with that is sometimes a person can break out with a rash and that's what
happened to me but it was cleared up in about a week after I saw a skin specialist who did the test on me and found out that is
was the drug causing the rash and I was given some cream to clear it up and then I went on vimpat and that works great for me.

One person you may want to see is an Epileptologist these Drs. specialize in epilepsy and you can usually find them at a big hospital
or a university hospital. I've gotten a lot more help from a Epileptologist over the yrs. than the neuros. I've seen in the past 48 yrs.

To find the correct medication ask your Dr. to do a DNA test on you this test will show the amount of enzymes in a persons liver
and it will show the body chemistry, then the Dr. can match that up to the best seizure med for you with the least side effect. When
I had this test done I found out I was drug resistant to all seizure meds out on the market right now so my Dr. told me to start using
cbd oil (medical marijuana) and I'm amazed at how that has help reduce my seizures. I buy it on line and it's delivered in the mail.
If you do have MS this will also help you with that. Stay away from anything with nutra sweet in it (aspartame) like diet soda
It's been proven that it will fire up the neurons in the brain and for some people it can cause more seizures. I found this out
after buying diet soda and having a lot more seizures. Another thing you can do is start taking vitamin B12 1000 mcg. once a day.
The B12 calms the nerves down which will help with the seizures. I wish you the best of luck and May God Bless You!

Sue

 

[EML]

Thank you. Our beloved NHS, though a god send, does limit options in relation to dictating specialised support. Neuro I spoke to did have interest/ involvement in Epilepsy but that was happenstance. Not heard or read anything re DNA testing to support medicine choices but fairly certain its not provided routinely

Will look at CBD. B12 is ok as its been tested recently. Unfortunately with t1D sugar free drinks are a lifestyle. I do try to minimise them and look further at ingredients. I know aspartame has bad rep for lots things. Sucralose used at times but not sure if this included

 

[Porkette]

Hi EML,

Often a Dr. won't offer to do a DNA a test because each time they give a perscription to a person they are making money.
When and if you have the DNA test done all they have to do is draw some blood and get some salvia from the inside of your mouth.
That is sent to the lab where they will be able to see the enzymes in you liver and your body chemistry, then they will be able
to find the best seizure med for you. It was my Dr. that ordered mine after trying over 10 different seizure meds over the yrs.
Wishing you only the best and May God Bless You!

Sue

 

[Sabbo]

Hello. I recall my last day of drivers ed in high school. It was the day I had my final behind the wheel practice, & right before class I had an SP. I decided right then & there that I didn't want to risk it--forget my own life, I didn't want to risk other people's lives by driving. Where I live, anyone who has epilepsy can drive if they've been seizure-free for 6 months. I've seen news stories of people having accidents due to seizures while driving. I'm glad I never risked it even though I'm dependent on others to take me everywhere/anywhere I need to go.