Hi I'm Stef and im really scared at the moment.

[all_new_me89]

hi im stef, im 19 and from bournemouth, dorset UK, and im at university.
i was diagnosed age 7 with idiopathic photosensitive epilepsy, and medicated immediately on epilim syrup. this changed to the tablets around age 9(in 1998) and continued on this until about age 15 where i pulled myself off the meds because they werent working. i stayed like this for approx 1 year, until i met my partner aged 16. i felt it was unfair on him that i was not controlling my condition, and he encouraged me to make the move from pediatric neurologist to adult neurologist. we attended the first appointment in december 2006 and started on a course of keppra, as the epilim wasnt compatible with my contraceptive pill. the keppra worked well at first but i soon found that stress around exams and school meant that i had to introduce clobozam to control it more. i ended up falling asleep during an important exam as the extra drugs made me so drowsy. i also had two grand mal seizures in the april of 07, one on my sisters birthday and another exactly 2 weeks later. again, the keppra dose was raised but in the last few months things have gotten worse again. again i have had scans and tests. i am halfway through changing medication to topiramate, but instead of overlapping the meds in the middle, my neurologist wants me to have a ------2 WEEK DRUG FREE PERIOD-------. i am so scared of something happening. i have had to tell all classmates, tutors, friends and cannot really go out alone on the low dose i am on at the moment. i have still got approx 3 weeks to go until this is happening but my symptoms are miles worse and i am freaking out. i am struggling to cope at university and nobody on the english forums seems to be replying. apologies to everyone but this seemed like a much more supportive atmosphere. hope you dont mind.

 

[Meetz1064]

hi, hello

and how do you do? Welcome to CWE.

Of COURSE we don't mind that you have found your way here. Goodness gracious.

My question is what planet is your neuro on? Has he/she given you a good reason for wanting you to be completely med free for 2 weeks? Honestly, I have never heard of such a thing unless you are on a VEEG (Video EEG) and then, it's only for a few days, NOT 2 weeks...to find out what type of seizures you are having.

Perhaps it is time for you to go doctor shopping........and hop on that doctor merry go round, as much as a pain in the arse as that is, I think it may be necessary........

Feel free to check things out here, there are plenty of nooks and crannies to explore. Mr B., our host, has built us an AWESOME home here. Buckeye or Eric should be around soon with some coffee.....theirs is far better than mine.

BTW, feel free to ask whatever questions you want. If we don't know the answer, we will certainly try to help you find the answer....

Take care.

Meetz
:rock:

 

[skillefer]

Hi Steph! Welcome to CWE. Sounds like you've had some ride...as for med changes, I went through one earlier this year....the ony reason I can imagine the doc wanting a 2 week drug free period would be to make sure that there weren't any interactions between the meds...Can you schedule the switch to happen over a break? Or, I know here in the states, a doctor can put you in the hospital and then rush the taking off and putting on to new meds. Other then that, all I can say is your increase in symptoms is probably being caused by the stress you are under. You have to find a way to destress. Go outside and scream if you have to, but get that stress out of your system. also, during the change over, make sure that you are really being careful about avoiding your triggers.. Stay away from flickering lights, get 8 hours of sleep every night, and keep a healthy diet. I hope this helped. You probably should see if the doc will hospitalize you over the switch and rush it. If they will, then go to your profs and ask them what the assignments are going to be and do them while your in the hospital.

 

[Crazy Monkey]

Hi Stef

I live in Norwich, UK. Welcome to CWE.

You are right, this forum is very supportive and hopefully you will benefit from it as I have done. We are all very friendly here.

It sounds like you really need to try and relax, as freaking out is not going to help your condition. The more you freak, the worse you will feel and not just from a seizure point of view.

Did your neuro give a reason for why there is to be no overlap on the drugs, as I have never seen this before?? you need to consult him/her again and point out your new concerns and tell him/her how much being on a low dose/drug free is worrying you.

Anyway once again welcome

The Crazy Monkey

 

[all_new_me89]

tried booking in with my neuro but no luck. his secretary should be getting back to me asap but last time i booked an appointment it took 3 weeks to get it through the post then a further 4 til the actual day. my university course will be very difficult to do anywhere else as it is a practical full time art & design course using the workshop. i have made arrangements for next years degree course to be altered to fit my needs but to get a final confirmation for that i need to pass this year first. i cant risk losing any more time but i dont know which is more important- my entire career or getting meds sorted-i have such conflicting advice from parents and such that my head is like a tangled mess of thread. no wonder its getting worse.

 

[all_new_me89]

also thanks for the quick replies all, i really appreciate it
x

 

[flinnigan]

Welcome. I'm originally from Preston most of my family is in the Liverpool area. I really miss it. I know it's a lot tougher getting into specialists in England. This is a great forum. There is so much info here you'll spend hours. Good Luck, God Bless and keep strong.

 

[alivenwell]

Welcome!!!!!!

I've never heard of completely coming off medications like that either. I did witness somebody who ended up in a hospital with one seizure following another. That person ended up having medication pumped into her arm with an IV until her seizures stopped.
She was OK after several days like that. I stayed with her throughout her ordeal.

Stress is one of the major factors. That sounds like one that you'll have to find a way to control, especially with the pressures of college work.

Sleep deprivation...I'm guilty of that. I did pull a few all-nighters at college. Hopefully your professors can show some flexibility with deadlines or exams.

Hopefully you don't drink alcohol. It simply doesn't mix well with epilepsy. And, people without epilepsy can have seizures if they become alcoholic and totally stop drinking it.

I do a stress busting walk or exercise with my dog. It really clears my mind of stress and gives me a refreshing viewpoint.

 

[epileric]

Greetings Stef

Here's your coffee:cheers: We also have tea if you'd like something more relaxing.

I have to agree with Meetz that you should shop around for a new doc.

If you really need to let go of some stress we do have a padded room where you can safely vent, scream, yell or do whatever you need to release that tension.

In the meantime welcome to the site

 

[dfwtexas]

Welcome,
I understand your feelings completely.
First, I think you should get a new doc asap and contact your current doc's office and leave a message that you cannot do the meds free period at this time due to school. I would stay on your current meds until you can find other doc. My father had E and was slowly, over a period of months, weaned off his meds completely. But they also had monitors on him during that time. I have E (I take Keppra too) and my doc told me from the beginning under no circumstance should I or allow anyone to cut me off from my meds.
Best of luck, let us know how it goes
jenn

 

[all_new_me89]

after talking to some of you last night, i went into uni today and have now arranged some mentoring and counselling with student support. first big step iv taken in a while. fingers crossed it will help.

 

[Belinda5000]

Hi Stef,
welcome to the forum.

I can't imagine my doc ever pulling me off all my meds period.
I'd go status w/out my meds .
If I was you I'd find another doctor ASAP.
Belinda

 

[misseschris]

Ditto

Hi: I'd just like to ditto the advice about resting and destressing and maybe finding some other neurologist. This 2 weeks seems unreasonably long to be without meds-Sounds like your future depends on these exams if that is the case then you have to be awake and cohesive-maybe continuing the current meds if they get you through would be the wiser idea and as soon as you're done find a physician who will help you get the one med out of your system and the other one started as quickly as possible (that may require a hospital stay though) but well worth it. There have also been alot of people on this site who've had success with the more natural therapies (i've not tried any of them though) maybe eventually that will be something to look into.

Good Luck in your endeavor!

 

[RobinN]

I made sure my daughter was off of meds for a month before trying a new med.
Have you considered that it is the meds that are making yours worse? This is what occurred with my daughter. There is no way I would make he suffer through stacking meds one on top of the other.

As you can see there are a lot of approaches to seizure control. I have seen far better control with my daughter by making nutritional changes, supplementing with vitamins and minerals, and neurofeedback than we ever saw on medication. Meds are not the only answer. My daughters cognitive ability has improved, her smile came back, and her overall quality of life improved.

 

[Zoe]

I made sure my daughter was off of meds for a month before trying a new med.
Have you considered that it is the meds that are making yours worse? This is what occurred with my daughter. There is no way I would make he suffer through stacking meds one on top of the other.

Welcome Stef!
I agree in part with Robin, that the drugs may make you worse, especially since they can cause a condition known as metabolic acidosis, which can trigger seizures. You may want to try a google search on "metabolic acidosis" and the name of your medication. For example do this google search:
"name of your drug" "metabolic acdosis" "seizures".

Also, since you will be drug free, you may want to do a trial period of a strictly gluten free diet as gluten sensitivity is an often unrecognized cause of seizures. If the diet helps, you may not be needing much or any medication.
The link below turned up in a google search for your area. Looks like you can contact them and maybe get some help there with the diet and possibly getting help in finding if a gluten sensitivity may be a cause of your seizures.

You should be able to contact this dietician through the hospital and ask her to direct you to information on the diet, if you want to try it, and whether she has information on how the gluten sensitivity may be linked to your seizures and how you might be evaluated.

A11399 Gluten Guidance v3Dietitian, Coeliac UK. Ms Claire Wylie. Senior Dietitian, Royal Bournemouth Hospital, Bournemouth, Dorset. Discussion panel. This document is based on input ...
www.cdrc.org.uk/CMContentFiles/Image/PDFs/Gluten-free-foods-a-prescribing-guide-full.pdf

 

[Bernard]

Hi Stef, belated welcome to the forum. :hello:

... i am halfway through changing medication to topiramate, but instead of overlapping the meds in the middle, my neurologist wants me to have a ------2 WEEK DRUG FREE PERIOD-------. i am so scared of something happening. ...

Did the neuro say why s/he wants to have a 2 week AED holiday? Any testing planned in that period?

 

[tripletdad]

Hang in there Stef

Must be tough, but you will get through it. When I was young, my original neuro moved me too quickly from Pheno to Dilantin and i had a psychotic reaction was not myself for over a month. I was 12 at the time.

moving from one E med to another is a delicate balancing act, my original neuro screwed that one up pretty good. A few months ago I went from Neurontin to Keppra and it was rough but I was able to get through it.

It sounds like your neuro doesnt want to take any chances, not sure how common that is here in the states, but coming down on one drug and ging up on another hasnt seemed easy either.

When i was in college I had a few seizures and I had not told me friends that i was epileptic and I found them, my professors and the university very supportive. Dont be afraid to seek as i think you will find people will help.

I hope this helps. Hang in there!!!!