Undiagnosed and Unconvinced

[DoubleMoth]

26, Male, You may call me Moth.

I've had possible absence seizures since a young age. Febrile seizures during childhood. Potential complex and simple partial seizures began about 2 years ago, and still continue to this day, though not was frequent. These include memory loss (though I am conscious for most episodes, I do not remember 90% of the details.) A typical seizure consists of limb jerking, loss of speech/slurred speech, empty staring, loss of fine motor controls, confusion, facial grimacing and being unable to comprehend what is around me, especially people speaking to me. They sound muffled, garbled, like speaking underwater. Most episodes are preceded by nausea, dizziness, tingling in limbs or scalp. Or a wave of heat/feeling feverish.

Possible sensitivity to sights and sounds, long-standing sensory crossover issues (smelling colors, tasting sounds, light smells strongly of dust sometimes). 72-hour EEG and a litany of tests confirmed nothing, neurologist was convinced that my seizures were psychogenic in nature. However, I remained unconvinced. Though I do have a longstanding history of mental illness, I don't believe for a moment that all this could be psychogenic. Complicated by such matters, yes, but not some invention of my mind, as has been implied.

I have been consistently treated like a crazy person by nurses and doctors alike, aside from my primary care physician. I cannot drive and have been unable to find work within walking distance because I am sensitive to the summer heat. Hot weather seems to make things worse, and I am considering moving further north if such a pattern continues.

In terms of sensory issues, my therapist also thinks that I have HFAS, which has compounded issues of communicating with doctors, and wrangling with the social nightmare that is getting a driver's license or a stable job.

So, I have to ask, is it normal for epilepsy to go undetected, even with extensive testing? Specifically TLE? I have noticed significant crossover in regards to sensory issues and epilepsy, especially related to those on the autism spectrum having a higher tendency towards epileptic disorders. if it is psychogenic, where does that leave me? I have very little control over these episodes, and am just now learning to deal with triggering events. Balancing all this with lack of employment and caring for my animals/household has been incredibly difficult, and I have been unable to qualify for disability. I am currently enrolled in school, but had to sit out a semester due to stress. This is all so inconvenient and infuriating, especially having no concrete physical proof that something is wrong.

 

[zombelina]

Hi Moth, sorry you are going through that. I think some people who do have psychogenic seizures can have a lot of success controlling them with certain types of therapy. The only tricky part is figuring out whether that is what it is. Talking to doctors (and getting them to really listen to you) is difficult enough as it is. I think I read a study once (I'll look for it) that individuals who have difficulty with social communication have a harder time getting quality medical care. Do you think there is someone you could bring with you? I wonder if that would help.

 

[DoubleMoth]

Thank you for responding.

My boyfriend usually comes with me (he was there for all my ER visits), and I was also able to bring a list I wrote out detailing my symptoms. The list was helpful at the doctor's office for getting a referral, but shrugged off at the ER. I imagine they thought that I just copied it off of Wikipedia or something. I do better when I have someone I know, or visiting with a doctor I am familiar with. I'm not inarticulate with new people, but I often ramble/talk in circles and I tend to freeze up when people start becoming dismissive of my concerns. My boyfriend can only help me so much, as he does have to work. But even with his assistance, and being a witness to my episodes, it's still been difficult to get people to listen to me.

I would not be surprised if social awkwardness or ineptitude contributes to difficulty with seeking/obtaining proper healthcare. I think it has a good bit to do with social anxiety (phone calls, difficulty comprehending the ocean of red tape that stands between you and not being sick, as well as just general difficulties with people.) I recently lost my insurance upon turning 26, and this just complicates things, as I've already sunk myself into medical debt due to an ocean of tests and several ER visits that resulted mostly in frustration and being treated poorly.

I'm sorry if this all seems a bit jumbled. I had an episode last night and it has me a bit loopy. I hope I don't come off as too pithy either. The prospect of long-term illness does not sit well with me.

 

[acshuman]

Have Someone Help You With Your Problem of Being Disbelieved!

Moth,
If you are having problems with the doctors taking you seriously, have your BF help you since he is attending the appointments with you!
You said that you have kept lists of what happens when you have a seizure. You need to sign, date and put the time the seizure happened on these lists when you make them. Then you need to show them to your BF and ask him to sign the list as a witness to what happened.
Not many health care providers are going to try and dispute something told to them by, what they feel is, an patient who is hard to believe, if a 'normal' (in their eyes) person tells them the same thing. This is exactly what you are doing when you get your BF's signature, as a witness to what happened, on that list!
Any doctor that would refuse to believe something that was presented to them like that would be one that needs to be reported to authorities as a doctor who is trying to hurt(with lack of feeling the empathy their supposed to have) their patients more than help their patients! :twocents:

ACsHuman

 

[Porkette]

Hi Moth,
I'm sorry that you are having so many problems, I have had epilepsy for 44 yrs. and I found seeing an Epileptologist the best thing I ever did these Drs. specialize in epilepsy and understand very good. I also have temporal lobe epilepsy and I have complex partial absence, and simple partial seizures. I found that certain colors would trigger seizures for me after having a special e.e.g where they flashed different color strobe lights one at a time by doing that they were able to find what colors triggered the seizures. After I've had an absence seizure it takes me a few seconds to realize what has happened and where I am. In regards to the smelling things , and seeing colors that happens to me and my Dr. told me it was a simple partial seizure also called an aura seizure. I was told the moment I get any feeling of a simple partial seizure to tighten up all the muscles in my body and make my hands into tight fists this in turn often has stopped my seizures.
I had surgery done to reduce my seizures a few yrs. ago but then I was told to start taking vitamin B12 once a day and that has helped reduce my seizures a lot along with staying away from to many carbs and starch foods. Start keeping track of your seizures if you haven't already write down on a calendar what time the seizure happened and what type of seizure you had, also write down when you start and stop your monthly cycle because hormones changing can often trigger seizures for many women. By keeping track of your seizure your Dr. may be able to see a pattern in your seizures I always have them the 3rd week of the month. Recently I just started using cbd oil and that works very well for me also. I wish you the best of luck and May God Bless You!

Sue

 

[zombelina]

I think ACsHuman and Porkette have given some great advice. I like to write things down too. I do notice that if I go to the doctor with TOO much information (or too much documentation), they are more likely to brush me off. I think they like things as clear and concise as possible. Maybe it's just how they were trained.
I sometimes talk in circles when I am nervous too, and I notice that a lot of doctors don't respond well to that. So when I go to the doctor, I usually write a draft of all the things I want to say, and then go through it and remove any information that seems repetitive or anything that is not top on my list of concerns. I usually end up taking out 60% of what I wrote in my first draft, and afterwards I still feel like I communicated the things I needed to.

 

[DoubleMoth]

This is all very sound advice. I am glad for the support.

It had occurred to me to keep a diary, and I did for a while but I'm terminally forgetful, and the neurological nonsense does not help. I do like the idea of having my boyfriend sign as a witness. It hadn't dawned on me to do something like that. Would give me a sense of satisfaction, I imagine.

I think that my best option at this point is to see a specialist in my area. That's just going to take quite a lot of arrangement, since I cannot drive right now, and my mother just had surgery. I will be taking care of her for a while. For the moment, the medication I'm on has things under much better control than previous months. I honestly think that the heat is what complicates things the most, as far as the seizures are concerned. I can easily avoid certain situations where too much stimuli is present (bars, clubs, movie theaters on a bad day), but I cannot turn off the sun. My AC is sporadic in its desire to function (old house.)

This is all just a lot to deal with. Sad to say it, but I'm very bullheaded when it comes to being sick. It's taken years to learn how to push past stubbornness and pride and just go to the doctor when I'm unwell. I try not to dwell on all this, but it's all so inconvenient. My support net is small, but stable, even if they are often just as lost as I am as to what to do.

 

[Cint]

DoubleMoth,

Sounds like you you do have a lot to deal with. If you're under a lot of stress, that can definitely bring on seizures. And if you're photosensitive, then being in the sun "could" bring on seizures for some.

I also have temporal lobe epilepsy and when my seizures started years ago, the drs. said I was hypoglycemic. I was misdiagnosed and went on having TC seizures because of it. So TLE can be difficult to diagnose. I also suffer from long-standing depression, that also goes hand-in-hand with TLE. So I was seeing a neuropsychiatrist + an epileptologist at an epilepsy clinic. That would be my advice for you, too. Not all neurologists are trained to properly diagnose the different types of E and all that goes with it.

Look here:
http://www.epilepsy.com/learn/treat...y-care/seizures-next-level-care-comprehensive

 

[valeriedl]

There have been a few times I've been outside in the sun when it was extremely hot, I was sweating my a** off, and ended up having a seizure. I have to be careful how hot I get now.

Stress is a huge seizure trigger for me. If there are things going on that are causing stress then we pretty much wait for the seizure to happen because we know it will. It sounds like you've got a good bit going on right now that could be causing some of the seizures too.

 

[DoubleMoth]

I am glad for all the advice. It will take a while to get all this sorted out, I imagine. Thank you all for sharing.

 

[Topcat]

I wish I had some good advice. All I can say is that there are some good people here and we have all gone through it so we will be supportive.

 

[acshuman]

Take Some Time To Examine What YOU Have Gotten!

Moth,
I know from my own experience that when someone gave me some advice, I could be very hard-headed and seem to take forever to try some of what I had been advised to do. Finally, I saw that what had been suggested to me was something that was suggested to help me, not hurt me! I have since then taken the time that was needed to think about how a suggestion someone made to me could help me and how to use that suggestion to help myself! This is something that can take some time to adjust to, but doing this can be helpful in many ways when it comes to making a person's life feel more complete. It also opens a person's mind up to allow new suggestions make a difference in a good way!
Many times the most difficult thing for someone to do is accept help in any form because of a person's self-pride. When a person learns that they can ask for help AND still keep that self-pride they will find out that many times there are people who WANT to help but had never been asked for their help! :hi5:

ACsHuman