The new, very scared kid

[scaredycat]

Hi Friends,

I am a 26yo female from Vic, Australia. The only major trauma I can think of is watching my brother pass away from a heroin overdose in 2007. I never even knew he had a problem with drugs. I have CP, but it's not severe, basically only affects my balance. I have been on the road to a diagnosis of something for a long time and it has sure taken the scenic route. About three years ago I started having bad headaches and terrible vertigo after a really stressful time at work (I'm a primary teacher). The stressful time subsided and along came holidays. Unfortunately the symptoms didn't go, as I thought they might. So off I went to the GP, still thinking nothing of it, but beginning to be a wee bit worried. They did a CT and found nothing and put it down to stress. A few months later, no better so I was sent to a neurologist. I still kind of thought they would tell it was nothing and just send me home. Instead, they did a battery of tests: lumbar puncture, a million blood tests, an MRI and a dizziness test, which I have forgotten the name of. By this stage I was thinking ok, maybe there is something. I go back to the hospital to have my follow up appt and get a diff. doctor this time. He tells me something akin to sometimes doctors don't have the answers, have a nice life. Fantastic that nothing serious, but I was fuming... there was no follow up, not even a hint of a suggestion at what all these horrible symptoms could be. So, I got a second opinion and was eventually diagnosed with vestibular migraine :woot: a name at last!

Then two years ago, I had a lot of gastric symptoms pain etc. so went for a gastroscopy, which found nothing. They gave me a sedative, which I didn't react well to... woke up with about six people standing around me, someone poking me in the neck and someone rubbing my chest. Blood pressure had gone sky high, heart rate went up and took ages to wake up. I was whisked away to the hospital and they found nothing so sent me home. Nothing happened again for a while, other than what I call 'cold shivers', which I have had since I was little and often have nothing to do with being cold. At the end of last year I had a day where I felt strange all day... sort of out of body. Then later that night the strange feeling grew and I felt like Ih ad to move around. Then I started getting lots of my 'cold shivers', which turned into shaking which prompter my bf to call an ambulance. The rest is kind of a blur. The ambos were trying to work out my symptoms and I was doing my best to explain but there was not a full sentence to be had - i just couldn't get words out. I couldn't hold myself up to walk. Yay - another trip to A&E. The dr there said she thinks certainly some of the shaking wasn't involuntary. They ran tests just to be sure and you guessed it, nothing. Also last year I had a nasty bout a bacterial infection in my gut, which has sent my digestive system up the creek without a paddle. So I went to see a gastroenterologist and we did some tests and then found I am fructose intolerant prob caused by the evil bacteria. Any-hoo, she was the one who did my gastroscopy and she said in all her many years of doing them she had never once seen a reaction like I had had, had I ever been tested for epilepsy? because the drugs they gave me can cause an epileptic reaction. So I discussed it with my GP, who thought it wise to check given the strange trip to the A&E I had with shaking. So back I went to the Neuro. Anyway, to cut a long story short, I have had more tests, which have shown nothing, I am off driving atm and am going to have a VEEG in December. I have had other weird experiences where I find things in my hand and have no idea how they got there, or I bring the shopping in and then have no idea what to do with it for a while, or I'll be driving and I have no recollection of half the trip and feel like I've just woken up from a nap etc. Neuro said last time I saw him, we'll do the VEEG at the Royal Melbourne, but I don't think it'll show anything so we'll get you the help you need in his most condescending tone. So now I am terrified that they think I'm faking, that they think I've wasted their time and resources. And if they do decide it's PNEA, how am I going to explain it to people, to all my friends who have been so worried. Is a doctor ever going to listen to me and believe me again? Is my neuro going to just stop treating me and tell me to go away and stop wasting his time? Please don't get me wrong, I do not want E, I do want to know what's going on but I am SO, SO, SO scared of the stigma if it's a mental disorder.

I would appreciate any help or advice offered.

 

[scaredycat]

ooopppsss I don't have complex partial, I have cerebral palsy, but I put in c p and it filled in the rest automatically, sorry... and sorry it's so long!

 

[Nakamova]

Hi scaredycat, welcome to CWE!

So now I am terrified that they think I'm faking, that they think I've wasted their time and resources. And if they do decide it's PNEA, how am I going to explain it to people, to all my friends who have been so worried. Is a doctor ever going to listen to me and believe me again? Is my neurologist going to just stop treating me and tell me to go away and stop wasting his time?

First off, if you do have non-epileptic seizures (and I don't think you do), then no-one should think you are faking, least of all the doctors. Non-epileptic seizures are very real in terms of how the manifest physically, and they need to be taken seriously and treated. If the doctors diagnose non-epileptic seizures they should refer you to a therapist for counseling. (Non-epileptic seizures are considered to be a traumatic response, similar to PTSD). I realize you feel that this would be stigmatizing, but honestly, how many millions of people are going to therapy these days?

Okay, that aside, many CWE members have found that it takes extra-persistence to find a neurologist who will listen properly and diagnose them without condescension or distrust. I wish it weren't so. It's important to be a strong and proactive self-advocate for healthcare (even better if you can have a family member or friend to help). This means keeping detailed notes tracking your symptoms and medical history, and getting second or third or fourth opinions if necessary. This means researching information that the doctors are too busy or too incompetent to learn for themselves. You can check out the markers for non-epileptic seizures here: http://www.coping-with-epilepsy.com/forums/f23/seizure-my-sleep-how-does-change-things-18322/ and see if they do or don't apply in your situation.

You mention that the gastroenterologist said that you were given drugs that can cause seizures -- which meds were those, and what were you given them for? Make sure you let any neurologist know about this, as well as about the 'weird experiences" you describe above where you've lost memory. Cognitive and memory issues are pretty clear signs that something neurological is going on.

There is a likely connection between gut issues and neurological issues, so while you're awaiting a diagnosis, you might find it worthwhile to take a close look at your diet. Food sensitivities can be triggering for some people, so you may want to see a nutritionist and/or and allergist to see if there are particular foods that may be making things worse. Different diets have been shown to help in reducing or controlling seizures. See: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/ for information about triggers, diets, etc.

We d o have a number of Aussie members. I don't know if any of them are in your neck of the woods -- if so, perhaps they can point you towards a good neurologist if the current one turns out to be a stinker.

Best,
Nakamova

 

[sunshineman]

Do you konw the latest medical exploration shows that the stomach disease causes diarrhea? This is medical complications. Since you do Gastroscopy from a doctor that you should know his own illness. I suggest you begin with a cure for stomach troubles, not just the use of drugs to have a reasonable diet. I wish you a speedy recovery.

 

[elis]

One of the problems with an EEG is if the neurologist can't trigger the seizure while you are hooked up to the EEG then they are not going to get the information to diagnose. I am a light induced E and also I have seizure activity around changes to my brain wave patterns as I wake - so when they flash bright lights in my eyes they see the changes in my brain waves - and if I start to fall asleep during the EEG and then they wake me up again they see the seizure disruption. But you may have to have one of those portable EEG so that you are actually hooked up when you have the cold shivers to see something. I don't know but the cold shivers sound something like what I would call my petite mal seizures. When I was a little girl I would call them "blinks". I don't feel particularly cold but there is that jerking shivering feeling. Certainly the description of confusion is really typical post seizure stuff. Until you figure out what is going on you may want to think about not driving. I know that it is really hard to give up your freedom and you need to make up your own mind surrounding how comfortable you feel.

Whatever you do don't give in. You say you are a school teacher with C. P. To me that shows that you are a woman who is intelligent and has already struggled against adversity and won. What I have found is that doctors unfortunately often have fairly large egos. There are some that don't but especially specialists this is often the case. I think that they have to have a healthy respect for their own self worth to do the work that they do. The problem with this is that if they cannot heal you immediately they tend to place the blame on you. Don't let that happen. Often we have to be our own best advocates.

I really hope that you and your family continue to look for answers. You are the only one that can truly tell the doctors what is happening inside your body. Whatever is the answer it is the truth and you are not faking it. Good luck friend.

 

[Sandie]

I really can't add anything except to agree with everyone and hope that you get some answers and some peace of mind soon.

 

[Nakamova]

One of the problems with an EEG is if the neurologist can't trigger the seizure while you are hooked up to the EEG then they are not going to get the information to diagnose.

That's not entirely true -- "classic" epilepsy produces a distinctive abnormal brainwave pattern that appears even when you're not seizing. I think it's trickier with other kinds of epileptic seizures, particularly partials, that don't produce those distinctive interictal brainwaves.

 

[elis]

I stand corrected Nak. My neuro showed me my EEG where things went off the rails and identified it as correlating to lights and brain wave changes. I guess that is just in my case or perhaps I misunderstood. Good to know though that there are non-classic type of seizure types that would not so easily be picked up. I guess the lesson to be had here is that the EEG is just one instrument to figure out what is wrong. If it doesn't yield results keep going!

 

[Nakamova]

I guess the lesson to be had here is that the EEG is just one instrument to figure out what is wrong. If it doesn't yield results keep going!

:agree: words of wisdom.

 

[scaredycat]

Thanks for your posts guys... SO much has happened since I first posted, lol!
I had the VEEG and all my weird symptoms happened except the memory and they found no epileptic activity. But on my head MRI they found lots of little white spots in my brain (which, to me, kind of looks like my brain has chicken pox lol) but on a more serious note they think I have a 'severe' migraine condition in which all the symptoms are related... Will refer back to this later!

So that was in December. Jan was the hugest roller coaster of a month I have ever been on lol! On the 1st of Jan, which is my birthday, my bf took me to all the places where we had our first kiss, our first date etc and then he proposed!!!!!!!!!!!!!!! Yay! I said yes of course lol and tomorrow just happens to be our engagement party Then we went to see my fiance's parents in Tasmania. Two days in I got really, really sick with what we thought was the worst ever gastro... it was horrible and so embarrassing!!!!!!! Anyway, got so dehydrated through all the yuckiness that I had to go to hospital and get 3 litres of fluid through I.V.... brilliant start to the holiday!! But then it got worse. Not long after I got home from hospital, I had pain around my belly button area. I figured it would be muscular given how much my poor stomach had been through that day. By the next day, the pain was starting to creep to my lower rhs of abdomen... uh oh! It wasn't the worst pain I had been in and so we continued on with our holiday. After three days, the pain was getting progressively worse. I had hardly eaten in nearly five days, I was feverish, but I didn't want to go to another doctor because I figured I was still getting over the gastro. Finally, my fiance convinced me to go or he would ring an ambulance. The dr took one look, a couple of pokes and rang an ambulance anyway.... yippeee hospital trip number 3 in a month, second of the holiday. The first night they hummed and haaaed a bit about whether to do a CT of my abdomen or not. But then they found blood in my urine and did a bit more poking and decided I had appendicitis and it couldn't wait to get back to Melbourne... FAR OUT!!!!! So next night it was taken out and now I have three pretty scars on my belly! But the story doesn't end there! On the way to the hospital my poor fiance accidentally hit a wallaby with our hire car, which of course the insurance didn't cover! And we had to change all our flights and accom. because I had to travel as minimally as possible. Anyway, the day after my op, I was in quite a lot of pain so gave me two different types of morphine, one tablet, one through the i.v.... oh dear... I collapsed in the bathroom after and was 'out' for about an hour or so. I wasn't totally unconcious so I remember bits and pieces, but fiance filled in the rest. They were nearly going to give me narcaine I think it's called, but I came around just in time! So I bought myself an extra night in hospital! Eventually made it home in one piece lol!!

Also in Jan went back to my neuro who was slightly less condescending this time and agreed with the VEEG docs that it is a severe migraine condition and what cause the change in symptoms he doesn't know... *rolls eyes. I have to back again in July and hopefully that will be the end of doctors for a LONG, LONG time! I have a wedding to plan!!!!!