I dont know what to do anymore

[horsehead]

Sorry for whinning on here again I just have run out of options. My spells which the neurologist seems to think are non e or parasomnias have increased again. Before I got my three day video eeg I was on keppra and klonipin. According to my records this was helping and i had no spells for two weeks. They took me off of the meds and i had 4 spells while doing the video EEG. Nothing recorded on the eeg and they took me off the meds.I had spells for a couple weeks after daily then they went away for a month or so. They came back again and my regular doc gave me trazodone which made me have 3 tonic clonic spells i lost bladder control and felt awfull. i stopped that med and tried nortripiline which helped my sleep but really did nothing for the spells. I have tried just to live with it but now my spells have increased to the most i have ever had to 6 or more a day that I can recall. I tried to remember everything that happened during the spells and the best i can discribe it is i am jolted awake ,feel kindof an electric surge through my body my mid section and legs rise up and slam back on the bed. others have felt like i got hit by something and my head and jaw jerks sideways. These only last a few seconds ,i scream as well during these and sometimes i can feel my mouth open hear the scream as if it came from someone else then my mouth shuts. Any ideas of what i should do. I am already talking with a psych and it has done nothing. Should i just go on like this ? I am always tired wether I have a spell or not and always have a headache. The neurologist and hospital that I had these tests was where everyone is sent here,the top place. My things on my head during the video EEG half of them had to be reglued in the morning and two were completly off my head.

[epileric]

Sorry to hear what you're going through. I once had a neurologist tell me that after 39 years of having seizures I was imagining it all. He didn't even look at an EEG, just talked to me for 10 minutes or so.

As has been mentioned before on CWE, a negative EEG doesn't necessarily imply that someone doesn't have epilepsy. Personally I would demand an other neurologist that understands the reality of what an EEG (positive or negative) implies. I would be concerned that to just go on like this without treatment would allow the seizures to get worse as time goes on.

[horsehead]

Do these sound like seizures to you guys? Am i just crazy. I am taking anti depresents too. They are not helping. What else can i do if they are not seizures? I will try calling my regular doc again and maybe there is someone else I can see. I just dont want to go through a bunch of expensive testing again only to end up poorer with no answers.

[Rae1889]

Well,
There are several things that can mimick seizures *there is a thread in here but cant find it* and the causes are all usually something so simple that people look past it. i think that whatever it is *non-epileptic seizures, hypoglycemia, allergy, E, etc* that as long as you find a definitive diagnosis and something that helps you'll be back to your happy self again.

Have they looked into Dystonia? There is a woman here in Winnipeg who has it, and was put in the same positions as you, because nobody focused alot of dystonia. it took a little while but they came to the conclusion that this was in fact Dystonia and the medications she was put on and the psych helped greatly.

What about Hypoglycemia? Diabetes? Gluten Intolerance *doesnt always show in tests*?

Maybe its time for you to start taking measures for yourself and start a gluten free diet and see if it helps. regardless of whether you dont think it will help, try it. you could be missing out on your miracle cure. Quit caffiene. watch your nutrition. try magnesium. also look into finding a neurofeedback clinic. There are so many things that cause seizures. you just gotta start looking out side the box of the "normal culprits"

you'll will find something as soon as you take a stand for yourself and tell your neuros what you want to try. its your body. fight for it.

[epileric]

Do these sound like seizures to you guys? Am i just crazy. I am taking anti depresents too. They are not helping. What else can i do if they are not seizures? I will try calling my regular doc again and maybe there is someone else I can see. I just dont want to go through a bunch of expensive testing again only to end up poorer with no answers.

They do sound like seizures to me but have you checked out the side-effects of the anti-depressants you're on?

Something that happens to me during a seizure is my pupils dilate, as far as I know this is common during epileptic seizures. Next time you have a spell check your pupils in the mirror & see if they shrink back afterwards (when I was younger I thought that was sooo cool to watch lol). That might increase the chances (or maybe even confirm) that it is epilepsy.

[horsehead]

The spells that my husband has seen he said my pupils did dilate. I have had tests for Hypoglycemia and diabetes it has been awhile though. I've had spells since I was 10 off and on and was dxed with e in the past but my parents didn't believe the doctor and took me off the meds because i didn't have spells for a few years.i will look into dystonia.I have never heard of it.

[Nakamova]

Hi horsehead, I know it's been a frustrating run for you. I would keep trying to find a neurologist who will diagnose and treat. Let them know that the "spells" were reduced while you were on Keppra and Klonopin. That's a significant detail! Even if the docs can't provide you with an exact diagnosis, they should take a look what seems to help control and go from there.

[Rae1889]

I just dont want to go through a bunch of expensive testing again only to end up poorer with no answers.

There lyes yet another catch 22 that we with disorders, diseases, disabilities etc face. If you want the answers then you need to pay. if you dont want to pay you dont get answers. there is no other way. But you cant live without answers and help. So you best option is to try to apply for assistance somehow and then keep going with the tests. see if there is anything around you that will help with your insurance or payments.

The tests are important and its just something that your going to need to go through to get the answers you want and need. it sucks majorly in the financial department, but it will help you in the long run. but you should start asking for the tests you want done.

[horsehead]

Yes I know rea and it does suck!!!!! I'm not working so it is my husbands hard earned money that is being spent for me. When there are no answers it makes it all that much harder to ask for. I guess it would be easier on me if it was my money you know.

[occb]

Rae, just a thought... you and I live in a country where the costs of these tests are covered by our socialized system, so we have very little idea of the actual financial burden they pose for people who don't have that kind of coverage.

It's all well and good to say it sucks, but do it anyway, when we don't have a real clue about whether they're able to eat or have a roof over their heads after just doing it

[Rae1889]

Well, your husband should want to help. It must be just as hard on him as it is on you.

Take the first step and see if there is an E advocate near you. Then see what kind of assistance you can qualify for. Check out the thread "What to do when you cant afford medications" and then try talking with your pharmacist. lots of places offer discounts to those who need them.

Next book a back to back appointment with your neurologist. speak to him in depth about how he wants to proceed from here and why. and bring up what else it could be. let him know that you cannot be left without answers and continue to live like this. ask him to put himself in your shoes. Start researching different option. ailments that mimick E and then research the tests involved to check.

Blood tests dont show everything, because the doctor chooses off a list of what to check for. so if he doesnt click off a certain box, you may be over looking the answers.

Next, go through your family tree. take note of all illnesses or chronic ailments etc that your family has. go as far back and as wide as you can. there may be a common link. If you have the spare time, do a medical history like Occb is doing for her partner.

Sounds like a lot of work, but if nobody is helping you. help yourself to MAKE THEM help you. sometimes having things brought right in front of them will help.

[Rae1889]

Yes Occb, but its important to look for any assistance you can when matters come to that. if you have to choose between food, shelter or finding "a cure" then all the others suck.

Just check out what is around you horsehead. you may be surprised at what you could find.

[horsehead]

Yes that is true occb. My video EEG was 25,000 dollars. My husband does have insurance but if doesn't cover all of it. I cant remember what our cost was but i know we are still paying for it. We live on only one income and I have two children. I cant just say sorry everyone you cant have what you want or need because I have to have more tests.

[occb]

$25,000 for a video EEG !!???!!! What?!!! Some people don't even earn that in a year!

My mom paid for an MRI here, and she complained that it was only $1,000, and her supplementary insurance covered most of that.

[horsehead]

yep that was for the hopital stay the video EEG,nurses and all that.

as far as my husband goes he is rarely ever here.All he knows is what the doctors are telling him and that is that they cant do anything for me. We have already had to hold off on home repairs do to the cost of my medical bills and my daughter has had to wait to take her driving training coarse. i know that my bills are what is causing delays in these and more areas and that is hard on me. So after all the tests I have already done come back normal and they tell my husband I need to see a psych and all of the money he has spent has been for nothing it kinda makes you think twice about asking for more tests.

[tam bam]

I know exactly what Horsehead is saying this is why I have held off on my plans for my up coming 3rd video EEG. EEG's are very costly. Mine 1st EEGwas about $10K and I have insurance but my insurance decided not to pick up on the cost either. They can choose not to do that if they want. (Grumble) Now my seizures have gotten worse too and must get yet another EEG test. The messed up thing is, is my last video EEG showed the abnormality in my frontal lobe and it is documented but the epileptologist will not except it and now he wants to me to take a 3 day EEG (last one was 24 hour) Well, I guess I will put on a show because this time they will take me off all my meds (last one they did not).

As for you Horsehead, I understand why you are gun shy. Hell, I would be too but I do agree with documenting your seizures (yes, I do think you are having seizures), and I do think you need to go back and at least talk to your family doctor and tell him/her that the pysch is not helping. I am worried for and I care about you as friend.

tam bam

[Endless]

I'm so sorry about all the bills. Adding financial worries to the picture can make things even more stressful. I believe you about the $25,000. My five day video eeg was $23,000 including the bills from both the doctor and the hospital. luckily I have good insurance.

I agree with all above, that there may be help or an assistance program you qualify for that would help with the medical bills. Your local epilepsy society can help.

[horsehead]

Do you have to be dxed with epilepsy to get financial help? My husband makes quite a bit of money way to much to qualify for most things but not enough to pay huge med bills.

[occb]

I hear you on that Horsehead -- partner doesn't qualify for disability because I just barely make too much. He couldn't get EI or worker's comp, because the doc refused to actually investigate the back problem, and he had to quit before he got anyone to look at his back *sigh* stoopid assistance.

I don't know if you have to be dx'd for financial help, but our E association was willing to help us despite that fact.

[Rae1889]

Wow! That's a lot of moolah
I think you just have to be going through a diagnosis to qualify.