I guess it's finally time to give it a try

[Mantis]

I first started having seizures at the end of 2008. Though I've always hated them, it wasn't long after then that I decided to avoid epilepsy communities. Why was this? Because I've always been tired of the uncertainty. Over four years later I still don't have any kind of answer. Even my original diagnosis of temporal lobe epilepsy has almost been disproved because I have been told that the electrical charges in my brain stretch far beyond the temporal lobe. Of course, this news was quite unsettling for me.

Lately I have been having far more focal seizures and some episodes of what have been described by others as psychosis. Just over a fortnight ago I had seven tonic-clonic seizures in one day which is very extreme for me. I used to have them usually once every 3-4 weeks. That was on Monday the 7th, and I was rushed to hospital. I can't even remember what happened to me for the 8th and the 9th, but I left hospital on the 14th. My stay at hospital was not so good though. I had lots of odd focal seizures and psychosis episodes which were thought to be related to Zonisamide, a medication they put me on on the 7th.

Upon leaving the hospital I have felt very nauseous. Generally over the past year I have from time to time had a lot of stomach pains and I have often thought that I have acidic problems. They got pretty bad lately. Nothing fatal, but I've felt very uncomfortable. Now, I investigated this and learnt more about pH levels. I feared I may have a lower pH than I should, and looked into acidosis and related conditions. Today I visited my doctor. It's no surprise that he gave me the cold shoulder which really pisses me off since for the past four years I haven't had any clear answer for what's happening to me. He told me that he's certain I only have indigestion.

However, he did tell me he'd try to arrange a test for me so he could let me know my pH levels. At least that is positive news. Sorry I'm swamping you all with this. I just really think my diet is taking a toll on my health and has a relation with my epilepsy. Now, this new drug which I'm being taken off called Zonisamide... I read more about it since visiting the doctor today. Guess what? Its wiki article (I can't post the link) lists warnings, with its main one being acidosis. Dohoho!

Well, I look forward to talking to you all, and I hope I can find some kind of a solution soon. Currently I'm on incapacity and live in government housing, but I hope I can get my life back eventually and perhaps get a degree which I almost had before everything changed. Also, I'm going to place a food order tonight online. Do you have any recommendations for an epileptic's diet? onder: I'm definitely going to make some changes, but I know some of you may have mixed opinions about what I've written.

Cheers. Here's to the future. :cheers: (Better not drink too much of that!)

 

[MaeDae]

Im at a lost for words, Im going to leave this one to the more seasoned CWE memebers of whom which I am sure will respond when they get the chance. I am sorry to hear of your experience and wish nothing but the best for you. I hope you get the answers you need as well as the help. Are you taking a different med now? Did the upset stomach stop since you haven't taken the med? Please keep us posted on your progress,

Hugs, Hugs and feel better 2
( I didn't drink to much of that, I only took a sip) : )

 

[Mantis]

Thanks a lot for the response maryltyme—much appreciated. I can confirm it will be two weeks until I am off the Zonisamide. I am on three other medications: Clobazam, Keppra and Lamotrigine. My memory isn't brilliant, but I will confirm the dosages as soon as I can. Since I'm still in the progress of weaning off Zonisamide, it would be difficult to confirm the changes, but I will definitely post any updates here. *hug*

 

[Chaz1]

Hello mantis,

Warm welcome to CWE.

7 T/C in one day, heavy going on you

Good riddance to Zonisamide (don’t know it), let us know who you get on. Stomach problems started on this med?

PH levels can be tested easily; drug store will have the strips.......r u eating major acidic?

Do you see one neurologist?

 

[Nakamova]

Hi Mantis, welcome to CWE!

I had similar issues to you with Zonisamide, very bad acid stomach, no appetite, low blood sugar issues. After I went off of it, they issues a warning for it about metabolic acidosis...

As far as diet goes, it's not one size fits all. it depends a bit on what your triggers are, and what keeps you generally healthy. If you have allergies or intolerances to certain foods, you want to take those out of the equation. Some have found that gluten-free diets help. Others have been helped by diets that feature low-carbs or low glycemic load.

You can read a bit more in the diet subforum: http://www.coping-with-epilepsy.com/forums/f39/

Best,
Nakamova

 

[huskymom]

Hi Mantis and welcome to the party! I am so sorry to hear of all your struggles that you are going through. I am glad that you found this site, hopefully you will be able to get some answers here, or at the very least, people that you can talk to. I wish you the best!

 

[Mantis]

I apologise for the thread necromancy. As a forum admin myself I know they can be a pain, but I was unsure whether to create a new thread that's mostly about the same topic. First of all, I've read your replies which I'm very grateful about. Things haven't been great, but I'm off the Zonisamide and whilst I do have an acidic stomach every now and then it's nothing compared to how it was back when I created this thread. So, what Nakamova said certainly is true in my experience as well!

I'm off to the Birmingham hospital in a week or so to see one of the best specialists in the UK, apparently. (Despite this, I wish he'd return a single phone call!) It's ridiculous that myself and my mother have paid about £120 (nearly $190) for our the train tickets to get the results of a PET scan which they claim could not be divulged over the phone. I hope the results are positive and that brain surgery is an option, and otherwise I hope they reimburse that money if it's just bad news. A couple of months ago I had twelve tonic-clonics in one day and psychologically it was the most frighteningly surreal thing I've ever experienced, so it would be a dream come true if I'm allowed surgery!

I have something else on my mind which isn't really related to this, so I'll create a new thread for that. Once again, thanks so much for your support and I'll keep you posted. I've been running away from dealing with my epilepsy for too long. It's time to stand up against it and not let it control me.

Edit: Just noticed a few questions...

Stomach problems started on this med? PH levels can be tested easily; drug store will have the strips.......r u eating major acidic?

Yes they did. From my own experience and what I've read from others (e.g. Nakamova) I wouldn't recommend this medication, but it goes without saying that it may work for others and though it only pleases the pharmaceutical companies, I guess our only option sometimes is a matter of trial and error. As for my diet, it still isn't fantastic and I do need to improve it. I've just been in a state of depression for some time now. I'm not enjoying many of the things I used to and I live on my own in a flat. Sometimes it can be difficult to build up the courage to go on a healthy diet. I want to build a diet plan though like I did years ago. (And lost quite a lot of weight.) I suppose building momentum is key.

Do you see one neurologist?

I've seen many different ones over the years. However, if the Birmingham doctor (which is requiring expensive travel costs) doesn't give me a positive result, I'm going to switch to Hope Hospital in Manchester which is much closer to me. At that hospital there is a specialist who specifically studies epileptics. The Birmingham neurologist, rather, studies many different kinds of brain conditions, so I think it will be a good move if necessary to switch to Manchester.

I am however seeing some psychologists who are trying to help me overcome my depression. It's not been easy to create any kind of social life, especially since most of my neighbours are much older than me. I've become a true hermit.