Mother won't accept my seizure diagnosis??

[Scientist]

This is probably going to sound absolutely insane (which it is), but my mother doesn't want to acknowledge that I really am having temporal lobe seizures. The reason for her denial seems to be that over the past 2 years of her own health issues, she's gotten sucked a little too far into the world of alternative/integrative/eastern/naturopathic/homeopathic/[insert buzzword here] "medicine". I hate to say it but I think a lot of these "practitioners" prey on the sick person's need for control, hope, and easy answers (with a dash of conspiracy theories.)
So when I started telling her about my symptoms (before I knew they were siezure auras), she started getting upset at me for not adhering to a gluten free/dairy free/sugar free/grain free/unprocessed/organic/antibiotic free/probiotic/prebiotic/hormone balancing/blood sugar balancing diet (complete with tons of expensive unproven supplements), saying if I really wanted to feel better I would be focusing all my energy on my diet and lifestyle. (She even suggested I take a semester off to focus entirely on my diet and stress management). When I tried to tell her about the first time I definitively lost time, she said she knew I hadn't had a good dinner that night and it sounded just like those "diabetic trances" her friend's diabetic son would have (more commonly known as a diabetic SEIZURE but I was tired of arguing that night.) When I told her I was starting to feel better on the AED my doctor had given me until I could meet with a neurologist, she got angry because I wasn't attributing the improvement to dietary changes. It's so hard because I live with her and she has always been my primary source of emotional support, but the past few years this weird alternative medicine has taken over her life and affects the way she sees everything.
I really want her to be able to understand what I'm going through, especially the memory problems, because it has started to get bad enough that it comes across as extreme rudeness (like forgetting my childhood friend committed suicide in the past year.) Also I just find all the symptoms terrifying and hate feeling so alone.

P.S. The diet obsession is especially weird because neither of us is overweight nor have we ever tested remotely positive for diabetes or hypoglycemia, so blaming seizure-like symptoms on "insulin resistance" is even weirder.

 

[masterjen]

When traditional Western medicine does not cure our ailments, for better or for worse it is common for people to seek out alternative medicine practices. If the person has researched the alternative technique and sees even some chance it could work, they are more likely to try it. I agree with you that many of the alternative practitioner's are preying on those of us with medical conditions and try to convince us that the techniques are "safer" and will help (even if they cannot provide hard scientific proof), but if someone is interested in trying something that will not harm them - eg. a diet change, like you mention - it may be worth a try. What is wrong is trying to force the belief that this or that will work onto someone else, as your mother is doing (assuming you do not have a health reason to eat a certain way because of a medical condition like celiac, obesity, food allergies, etc.) As for improving lifestyle in general, well, that is something everyone should do, especially those with seizures since lack of adequate sleep, stress, inadequate exercise, excess alcohol, etc. can all lower seizure thresholds.

Even in the Western world we are constantly bombarded with information these days that says this and that health problem can be minimized or avoided with proper diet and exercise, avoiding stress, 5 (or is it 10?) minutes per day of meditation to cool our tempers, etc. so it is understandable that health conditions the average person knows very little about will be lumped into the category of those that can be helped by these simpler lifestyle changes as well.

Having said all that, however, it is important to remember two things:
1. your mother loves you and it can be very difficult for some people to admit their loved ones have a serious ailment (parents especially often feel that perhaps it is somehow partly their fault);

2. she is your mother and has raised you using her techniques; the alternative medicine she has tried perhaps helps her feel better and therefore she feels it should work for you too

Just be patient with her. Talk with her when she is feeling fairly well and explain things perhaps one at a time over a few days rather than all at once. Invite her to come with you to your neurologist appointment so she can hear from the doctor what you have going on. Some people respond better when they hear the information from the source rather than second hand.

 

[Nakamova]

Hi Scientist, welcome to CWE!

It can be tough when a well-meaning relative or friend "knows better" about what ails us and what will cure us. It sounds as if your mother accepts your symptoms as "real", but is unwilling to recognize that the diagnosis and treatment may different than what she has concluded.

masterjen has provided some good suggestions. Hearing the medical information from the neurologist might carry more weight with your mother. But if she doesn't want to accept what the neuro says, you need to be clear that you are ultimately in charge of your treatment choices. Your mother doesn't have to agree with them, but she should respect them. Be patient, but also be matter-of-fact and firm. If your relationship with her becomes a source of stress, you might benefit from counseling to find ways to cope.

Regarding diet: Epilepsy is a catch-all term for a wide variety of seizure disorders. So there is no "one-size-fits-all" treatment. While diet can sometimes play a role in reducing seizures, it's important to keep in mind that: 1. No single diet will work for everyone, and 2. There are many different diets to consider (everything from fasting to ketogenic to low glycemic index to allergen-avoiding). So your mother's well-meaning advice isn't entirely off-base, but may not be relevant to your particular diagnosis.

If you keep a symptom diary you might -- or might not -- be able identify triggers that are lowering your seizure threshold. The #1 stressor is fatigue, but for some folks it might be dietary in origin. Stressors can also be hormonal, environmental, emotional, etc. For more information about diets, keeping a diary, etc. see http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

Also I just find all the symptoms terrifying and hate feeling so alone.

You are not alone! Folks at CWE are a great source of support and anecdotal advice. If you need to vent, vent away! You might also benefit from seeking out sources of support closer to home. Are there other family members or friends that can help? Support groups?

And keep asking questions. Knowledge and familiarity with epilepsy can provide a useful perspective -- for both you and your mother.

 

[Cint]

I really want her to be able to understand what I'm going through, especially the memory problems, because it has started to get bad enough that it comes across as extreme rudeness (like forgetting my childhood friend committed suicide in the past year.) Also I just find all the symptoms terrifying and hate feeling so alone.

P.S. The diet obsession is especially weird because neither of us is overweight nor have we ever tested remotely positive for diabetes or hypoglycemia, so blaming seizure-like symptoms on "insulin resistance" is even weirder.

Hi Scientist and welcome,

I agree. The symptoms are terrifying but realize you are not alone. I suffer from temporal lobe epilepsy and Type 1 Diabetes. Since you've already been tested for hypoglycemia and diabetes, listen to your own body and what it is telling you.

I was first diagnosed with Diabetes because my vision was very blurred and I was LOSING weight very rapidly. Plus I was very thirsty all the time. My symptoms of of TLE are staring into space and not comprehending what someone would be saying to me. I would have no recollection when I came out of the seizure. I DO know the difference between a complex partial seizure and when my glucose level drops. When my glucose drops, this weird feeling of gloom and doom overcomes me, my lips feel numb and sometimes I break out in a sweat, but I'm still conscious.

So stick with the neurologist's advice and hopefully your mother will come around to your side. Unfortunately, even this day and age "E" still has somewhat of an ugly stigma attached to it and folks like to think "it's all in one's head".

 

[acshuman]

! ! ! ! WELCOME TO CWE, Scientist ! ! ! !

Sciebtist,

I know exactly what it feels like to have a mother(?) who refuses to believe that you have E. Mine refused to accept the diagnosis and went to her grave 48 years later still holding to the thought that I had never had E. It is very hard to be in a situation like that. The person who you are supposed to be able to trust for any kind of help literally looks you straight in the eyes and says that you are the reason for the problems, not E.
The thing was with mine is that she was in great health and only 31 y/o. In the screwed up mind she had I was pretending to have seizures to get attention. I was an only child and the only child for anyone to see to begin with. Why would I want to fake seizures to get attention?
I was treated as 'damaged goods' by her as a result and never spoken about to anyone outside our family because of her feelings. Many people that had been friends with her for over 30 years thought no children existed.
Hopefully, this will teach you how to mature faster than normal and be the 'mature person' in the relationship. That is what I did and I can say that I have found that that treatment as a child has made me into an adult who is able to handle problems much easier than others.
It feels terrible to you now so you need to hold your head up high and realize that 'you' know the truth and that is much more important than what anyone else believes!
You need to find people to talk to that will understand your problem. That will give you a chance to 'unload' the stress that has built up in you and you will feel much better.
CWE is a great place to do that kind of talking with new people you will meet as a member! :clap:

acshuman

 

[Sabbo]

Hello. I understand what you mean.
People often thought I was making things up when, as a child, I'd complain of "weird feelings" in my head. It wasn't until after I had some Tonic Clonics seizures that they were diagnosed as Simple Partial seizures. Later, some family members gave me homeopathic things to use, attempting to 'cure' my epilepsy. Of course nothing worked. Now I have Complex Partial seizures as well as Simple Partials.

 

[Porkette]

Hi Scientist,

I understand how you feel re:your mom my immediate family sent me away to a boarding school out of state where I wouldn't come home after school every day because they didn't want to deal with my E. After I got out of school I proved to them that I could make something of my life and I've been working in public schools special Education for 32 yrs. now working with students who have neuro problems and I can relate to them very well.
Just like you I have temporal lobe epilepsy and I've had seizures for 45 yrs. now. I found that I did have to stay away from anything with nutra sweet in it because the nutra sweet can cause more electrical activity in the brain which in turn triggered seizures for me. You may want to try taking vitamin B12 once a day and since I found out I was drug resistant my Dr. had me try CBD (medical marijuana) and to my surprise the CBD has decreased my seizures the most. I wish you the best of luck and May God Bless You!

Sue

 

[Frink]

Hi scientist, welcome to CWE.

I do not think you will ever convince your mother of anything. It is not the information she has a problem with, it is the source. Some naturopathic guru convinced her that these supplements and a naturopathic approved diet will cure every disease.

Maybe if another guru, someone that she respects, gives her the information she willy accept it but she is fully invested in the naturopath philosophy so do not count on it.

Listen to yourself, listen to your doctors, take your meds on time, eat healthy, exercise, and if your mom wants you to work on managing your stress, she should probably stop causing you stress.

 

[seagull]

My mother is ashamed of my e will not talk about it.she would have throw Meds out in her words get a back bone..your mum sounds well meaning and proberly irritating that's the way she is.because alternative med works for her for you it different would she listen or read up about e and could you leave leaflets around the house.
Have you checked see if some of these alternative people screwing money from her
yes it can be terrifying if you have that aura of total panic and terror.Is anyway join local surpport group then perhaps invite one of them home.Any How welcome here we surpport you we all got it and are people on here who don't have it but member of family do it refreshing seeing family members doing all they can to understand.Is anyway your mum come on here get some understanding of condition
Each of us have our own story and it can effect us in different ways so ask any question there be someone who will help you..Have admit that diet er intresting but not for me

 

[Garbo]

Hi Scientist,

I am very sorry to hear that you're not receiving the love and emotional support that you should be getting during this time. And just to echo some other sentiments already expressed above, there are wonderful outlets online, plus therapy groups and hopefully your neurologist is supportive.

 

[350spider]

You have already received some wonderful advice here, so I won't add to it, other than to say this is a good place to get some of the emotional support you need, so you are not alone.

 

[Ravensong]

I just wanted to add that when I was first diagnosed (many years ago), my mom also did not accept that I had epilepsy. She tends to believe everything - literally everything - can be fixed by proper diet, exercise, and the right attitude. She did finally come around, though, and has turned out to be might greatest supporter and a strong supporter of organizations that benefit those with epilepsy. So...don't give up on your mom!

 

[hydrogyrum]

My mom accepts that I have epilepsy, but she's experienced my bad times with the medical community. As a result, she suggest that I just ignore my epilepsy and deal with it the best I can.

I agree to her to some extent, but it's not like I have the common cold. There's nothing to be done for some kinds of epilepsy, so what can you do?

OTOH, I've got relatives who have gone the holistic route and have had some success. They went to a quack who had them put their arms out in front of them and were told to keep them there. Then, the quack pushed down on them. Believe it or not, the quack was able to move their arms!

Personally, I believe the quack knew a few things about hypnosis. And, I believe that my relatives are having psychological problems, not physiological ones. Nonetheless, I'm told that perhaps I should consider quackery to solve my problems.

In the 1990s, I went whole hog into alternative health (eating) and medicine. It didn't solve my problems. I doubt it would solve them now. Some moms don't want to admit that their kids have actual medical problems; they look at you as a kid, not as a biological being whose biology sometimes goes awry.