Has anyone been undiagnosed until they have been well into adulthood?

[90Nine]

Hi there,

I'm new here and found this site while doing some research on absence seizures and temporal lobe epilepsy.

I won't make this long, but I am curious if being diagnosed later in adulthood is something that is common.

I've had things happen throughout my life that indicate that I may have been having absence seizures and over the past year I have not really been able to work much (thankfully blessed with jobs working at home part time). I've always been an over acheiver, but have had substantial stress over the past 6 years.

Honestly, I don't know, but I do know when I was a child my school called my parents and told them I 'spaced out'; they took me to counselors and had me tested for drugs, but ultimately sent me away when I was 14. I just know that I was frequently 'spaced out' and 'confused', sometimes did not know where I was (meaning I got very confused and detached while trying to drive somewhere then not remembering parts of it).

Going into being an adult - when I was around 19/20, I started having these 'episodes' where I felt like the front of my brain was clenching (like a fist) and burning. I would have floaters, etc, and be 'out of it' after these episodes.

Shortly after this I started having extreme floaters, heat wave visual things and what I would call my 'fuzzy head' - which was like static on a TV, visually. I had a lot of anxiety as well and was most always in a fog - it wasn't like lethargy or fatigue, it was more like not engaged.

This subsided after I started taking xanax. But I would frequently have experiences when my arm or leg would jerk - pretty often, migraines, extensive floaters and that 'disengaged' feeling.

This all continued over the years and sometimes worse. I never had any mood swings or anything like that. Just always when I had energy it would be zapped with these floaters and the dis-engaged feeling...in extreme cases the 'heat wave' visuals would come in addition to the 'tv static'. And of course the jerking and twitching and sometimes that clenching/burning feeling in my brain. I would also suddenly start shaking...almost feeling like my blood sugar had just dramatically dropped. I would think to myself I was almost on the verge of a full blown seizure (at that time never even considering I was having neuroligical problems).

My ears ring alot and I hear a sound like what you would hear with a test to check on a baby..not sure what that is called.

I had a 'ocular migrain'; I was on the computer at work and the center of the page had a circle and the circle continued to get larger until I could not see anything on the page. Never any headache pain, but I was knocked out for a day after that.

In stress situations I go have a moment of 'spacing out' then the floaters, etc..and go into the, what I call, 'almost coma' phase.

About 2 years ago I started getting extremely iritable - very little patience, which is not like me at all. My energy dimished into the floaters, heat wave visual sensations and sometimes the static tv visuals.

I'm 39 now.

There was a period over the past year that I felt I completely lost my long and short term memory. It was embarrassing because I would be with a CEO and I couldn't remember things in our discussion I should know. It wasn't that I could not find the words - It was more like I had that deep spacing out moment and could not remember things. Hard to explain. Just not really able to carry on a conversation, but not unable to find words..Just more like I could not remember things to reference and could not connect in my brain to speak intelligently like I would normally do. Ack.

So, not that long ago I went through the Micky D's drive through to get a drink and I was talking to the guy and I don't remember the end of it before he gave me my drink and then he looked at me really funny. I remember thinking that was weird and what happened...

I know that sometimes we drive our cars and go into an alpha state (and I know that by searching because that happens to me frequently). And I thought I was in an alpha state.

I wake up in the night an my hand is completely asleep - or rather there is no circulation and I need to revive my hand.

Often I wake up in the morning with that 'spaced out' feeling and I know that is normal sometimes, but this is different.

I recently had an episide where I had the worst pain on top of my skin on my right side (my right side is where I have everything wrong). It felt like I had a sewing maching needle go into my skin..It started out with having some sensory issues in my leg - it started out one morning on my thigh on the right side then over the next week moved into my whole leg in the front and my foot. This has lasted 6 months until I could feel the top of my skin normally and I'm still looking forward to my foot being totally recovered.

During the, what I call the 'epicenter' of this episode, I could not feel my insides. I went to go to the bathroom and I had to force myself to urinate (sorry). My bowels stopped all together; I took an entire bottle of Miralax over a 2 week period and psyllium husk, amonst other things and nothing happend. Sexually, I could not feel ANYTHING.

I was being treated for depression and my doctor gave me Lamital. This has changed everything for me (but hasn't fixed everything). During the episode I described above, my hip got bursitis when I lost feeling in my stomach on the right side and it was very painful. But the Lamictal has made that go away mostly. I still get it.

Not sure what is/has been going on with me, but I know it is neurological. My vitamin D levels are extremely low and I've been put on a prescription for that; 50,000 iu x2 per week and am being tested for a parathyroid tumor. But that does not explain the other symptoms I have had since I was a kid.

Seriously, I'm not a person who goes to the doctor. But I need to get back to work so I'm trying to figure out what is causing this situation where I'm feeling good then having all of the floaters, 'heat waves', static, visually and the dis-engaged feeling I have after I get these symptoms.

Thanks for reading this long post. I know that sharing this information can help.

Anissa

 

[Ruth]

Hi 90Nine, Welcome to our forum. This forum was made out of love by Bernard, for his wife. You will find a lot of love and caring here.

Your symptoms sound like some of mine. I get confused, cannot remember things and get lost. To be diagnosed have a Video EEG. Ask your doctor to refer you to a neurologist.

For my Vitamin D, I take Calcium Citracel with Vitamin D. It sounded like you said that you have problems with being at the computer. The bright lights of a computer can cause seizures. You are probably photosensitive. Wear dark sunglasses when you are at the computer or watching TV. Feel free to keep in touch with me. Just press on my name and you can write me a message.

I was diagnosed with epilepsy when I was 6 years old with those spacey, abscence seizures. I am 66 now.

 

[Bernard]

Hi 90Nine, welcome to the forum. :hello:

I won't make this long, but I am curious if being diagnosed later in adulthood is something that is common.

Yes, a good portion of this forum is comprised of folks diagnosed with seizures as an adult who later discover (with quite an epiphany) that they've had undiagnosed absence or simple partial seizures for years. There's also a large portion of members who experienced the onset of seizures in adulthood without experiencing any as a youth.

My ears ring alot and I hear a sound like what you would hear with a test to check on a baby..not sure what that is called.

tinnitus

Not sure what is/has been going on with me, but I know it is neurological.

It certainly sounds like you have been experiencing seizures. You should probably find a neurologist to run some EEG tests.

I'd also recommend reading the following threads:

http://www.coping-with-epilepsy.com/forums/f23/epilepsy-101-part-faq-part-tips-advice-1255/

http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

 

[Ruth]

Hi 90Nine, you also said that you have floaters in front of your eyes. I have that too. That is due to my Diabetes Type 2. Have you been checked for diabetes? My diabetes was unchecked for years and that caused me to have more seizures. It can be ruled out/in by a simple blood test.

 

[Crystal11]

Welcome to CWE. My twin sister and I have had seizures since age 6 but since they were short absence seizures they were hard to see. Our teachers told Mom and Mom took us to drs. But Mom was afraid to put us on meds since we were born 3 months too early and were on a lot of other meds just to stay alive.
I knew something was wrong and so I was diagnosed again in 2000 with complex partial seizures and was given Tegretol. Then I stopped meds AMA since I was sleepy all the time. Then was rediagnosed for the 3rd and 4th time in 2007 by PCP and neurologist. So now, finally I am on two meds Keppra 3000mg and Tegretol XR 600mg and have been for several years now. I wish something would of been done years ago, more perminantly but a lot of it had to do with not understanding about Epilepsy by us or our Mom.
I am controlled pretty good now but still have some troubles with a seizure here or there..
Good luck with everything!
We are all here for eachother.

 

[90Nine]

Thank you all for your replies. I know I said it wasn't going to be long, but it ended up pretty long

I got my referral today to a neurologist. I guess the most disturbing part of all of this is that I haven't really been able to work for the past year. I've just felt awful, like I could not even function. Even put together a sentence at times.

My doctor had given me Wellbutrin because I was actually pretty burned out, but it doesn't make sense not to be able to get out of bed, think or function. I just looked up when I first started taking it and it was in January of 2008 - that is when I started feeling so awful. But just really felt like a new person when I started taking the Lamictal. I've read that bipolar disporder and temporal lobe epilepsy can be almost exact in it's emotional symptoms. My family and friends were very surprised when I told them about this...they didn't agree at all. However, my doctor also said that I had no diagnosis, that she was still trying to diagnose me and that we would just treat the symptoms. She put me on it after I told her that I could hardly function and form a sentence at times and all of that good stuff. So that would make sense I guess. We will see

There could be a couple of things going on I suppose. Is it possible that undiagnosded seizures could lead to other neuropathies?

Thanks again for the replies and I will keep you posted.

 

[Meetz1064]

Please take

note of the side effects of Wellbutrin. And, I will say that I have heard of this happening before. (Emphasis is mine). I am including the link so that if you would like to read more (good idea), you can.

Wellbutrin Side Effects

Side Effects of Wellbutrin - for the consumer

Wellbutrin

All medicines may cause side effects, but many people have no, or minor, side effects. Check with your doctor if any of these most COMMON side effects persist or become bothersome when using Wellbutrin:

Constipation; dizziness; drowsiness; dry mouth; headache; increased sweating; loss of appetite; nausea; nervousness; restlessness; taste changes; trouble sleeping; vomiting; weight changes.

Seek medical attention right away if any of these SEVERE side effects occur when using Wellbutrin:

Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); chest pain; confusion; dark urine; delusions; fainting; fast or irregular heartbeat; fever, chills, or sore throat; hallucinations; hearing problems; menstrual changes; new or worsening mental or mood changes (eg, concentration problems, panic attacks, aggressiveness, agitation, anxiety, impulsiveness, irritability, hostility, exaggerated feeling of well-being, inability to sit still); red, swollen, blistered, or peeling skin; seizures; severe headache or dizziness; severe or persistent joint or muscle pain; severe or persistent nausea, vomiting, or stomach pain; severe or persistent nervousness, restlessness, or trouble sleeping; shortness of breath; suicidal thoughts or attempts; tremor; unusual swelling; vision changes; worsening depression; yellowing of the skin or eyes.

Welcome to CWE, by the way. I do hope you enjoy it here. Please be sure to keep an E journal. It will help you immensely!

 

[epileric]

I got my referral today to a neurologist. I guess the most disturbing part of all of this is that I haven't really been able to work for the past year. I've just felt awful, like I could not even function. Even put together a sentence at times.

If I can make a suggestion start making a list of all the questions you have for your neurologist & bring it when you see him/her. Also mark down the answers in point form so you don't get mixed up as to what he said about what (like I do)

 

[90Nine]

Great suggestion. I just called to schedule the appt and the person asked me what was wrong. I was all over the place...I'm definitely going to do that.

I've called my other doctor to stop taking the wellbutrin. I know it's what has been contributing to feeling bad.

My appt is not until August 30th, but it is with a doctor who was voted top neurologist in seattle for 2009. So I guess it's worth the wait.

Quick question: If I go off of the wellbutrin and increase the lamictal, will that effect an EEG or MRI? If I have been having seizure activity or some type of neurologic issue and the lamictal is treating it, will it not show the problem?

You guys are great. Thank you very much.

 

[epileric]

The EEG measures the spikes in your brainwaves. If changing your medicine doses effects your brainwaves it will be measured.

Just don't do anything with your meds without consulting your doc first. They should know exactly what you've been taking when you go for the EEG to get a good perspective of how they effect you neurologically.

 

[RobinN]

Gut instincts have steered me in the right direction most of the time. So if you know that Wellbutrin is contributing to side effects that are making life miserable, then you have every right to ask to be taken off of it. You are in control here. Conventional medicine is only on your side to protect you and to guide you and to give you advice. They can not force you to take a drug.

My son to a medication like this when he was a teen, and it caused suicidal tendencies. Many of them do. He did not want to get out of bed each and every day. It was a struggle at that time for him too. He has been much better since watching what he eats.

 

[Ruth]

Hi 90Nine,

You mentioned neuropathy. That is common with Diabetes. Have a simple blood test to be checked for diabetes. It can cause your epilepsy to be worse. You need to have the 2 working together. That will help your epilepsy.

 

[lennie]

Hi Anissa:

Reading your post helped me understand some of things my son goes through.
I don't have epilepsy, my adult son does.
He was "spacey" as a kid. We jokingly called him the Nutty Professor at times. Other times we felt frustrated and felt he just wasn't "paying attention." Example, we would ask him to do a simple chore and he'd get halfway across the yard and come back without a clue what we had asked.

In 6th grade he was diagnosed with Attention Deficit and was put on med. (Ritalin.) It seemed to help some. In 8th grade it seemed to not help and we took him off. The school psychologist suspected at this point he may have had bipolar disorder and/or maybe epilepsy. I had him tested for epilepsy and got negative result. (Didn't know at the time that doesn't necessarily mean you don't have it.) I do recall one incident when he was about 14. We were walking at a strip mall and talking and though he continued walking he had this blank expression and I called his name a couple of times and he responded after about the third time and seemed almost startled. I suspect now that this was a "petit mal".

He moved out when he was 17 and so I wasn't around him all the time.

When he was about 22 or 23 he was up in Mammoth Lakes, CA working a lot of hours, under stress and was drinking fairlly heavily and had 2 major seizures.

Now he is 26, has major seizures regularly, is unfortunately an alcoholic and is even a danger to himself. He has had 2 seizures on a road and had to be taken to emergency for stitches in his face. It's a miracle he wasnt' killed.

Anyway, I wasn't planning this to be so wordy. I don't know what it is like to have epilepsy. I have only seen one major seizure. (Have been around for the small ones) I've only seen him after he has had one where he is "not all there". His memory is getting very bad. He blames the Keppla but is it the seizures or is the alcoholism? And is it common to be in denial about the seizures? After he has one he gets very angry if anyone tells hiim he has had one. Denies he has had one.

Just recently he messed his face up pretty bad, stitches, another visit to ER.
I feel very upset. As a mom I'm supposed to protect my child and it hurts to see this happening to him. He refuses to get help with the alcohol, which obviously is not helping his epilepsy!

Yikes, I guess I needed to vent. Thank you for your post.

 

[LuminaryLucy]

simple answer "yes"

Hi

Officially i was diagnosed only a few weeks ago but it all goes back further than that. From Januray this year i began "fainting" every couple of days and being constsantly dizzy. After a couple of bouts in hospital the doctors ruled out; cardiac issues, cancer, auto immune diseases, but noone even gave epilepsy a thought.

Then in despair i was sent to a doctor like "House" and he had a stab at epilepsy on the grounds of everything else being ruled out and also that i was so sleepy after fainting. He said have a go on these meds and have a nice life. he prescribed 1000mg epilim (i think its called depakote in the US - i am in Australia). After 4 days there was a difference, the fainting episodes decreased and the dizziness went away.

However it wasn't all perfect and i kept having weekly/fortnightly experiences of varying kinds. All the wonderful people in my life kept pushing me to see a neurologist because my brain has turn to mush - can't think, can't make decisions, can't remember things. Oh and the part where you lose the words mid conversation - that strikes home with me.

Neuro ran a 24hr EEg and found seizure events. woo hoo!!! scientific proof that i am not going mad that i am not depressed or anxious or have chronic fatigue syndrome or anything else they have tried to throw at me to make me go away.

My conclusion for you Anissa. I am 36 next month. I "fainted" for the first time when I was 15 and convulsed in my Dad's arms. The doctor I saw at the time said - some people just faint that way. So i have been fainting on average once a year every year since then. I guess the epilepsy wanted my attention and didn't think annual events were enough. But just keep pushing for someone to PROVE to you why you feel this way. If someone says i can't or i don't know or there is nothing there - find someone else.

I hope my long story helps you as I find many other peoples stories on here help me. :lol:

 

[Kansas Educator]

Oh yes, I was diagnosed at the age of 53 although realize I had been having "episodes" for some time. Mine are complex partial seizures caused by a scar of unknown origin on my right temporal lobe. Depakote ER 1000 mg. seems to have done the trick. I haven't had anymore episodes in the year since my diagnosis and actually feel like my thinking and memory are getting clearer all the time. Insist on a diagnosis one way or the other and look for as many ways to keep yourself healthy as you can.

 

[Ruth]

I was diagnosed at the age of 6. My mother was watching for it because my sister had it. My father also had epilepsy. It is hereditary in my family. I have two sons with epilepsy. I am 66 now. My epilepsy has gotten worse over the years.

There are a lot of people in the forum who are not diagnosed. They can get a video EEG to find out one way or another. That is frustrating not being diagnosed.
Ruth

 

[90Nine]

Hi Everyone,

Thank you for all of the replies. I have been on vacation so just catching up. This is really helpful and encouraging. 2 more weeks until my appt

I have been doing A LOT better since I've greatly reduced the Wellbutrin (which I think was an antogonist for the issues I've been having - you're not suppose to take it if you are prone to seizures of any kind). I know the Lamictal has been helping greatly as well. It feels so NICE to be able to actually think and remember things and not be so mentally fatigued and confused all the time. I still have the aura's and visual stuff, but I'm sure my appt will help clarify and perhaps a adjustment in the medication.

I went to a conference this past week and they used very bright flashing lights and I thought I was going to die. I was actually in tears. I felt horrible for the rest of the night. Pretty awful.

Thanks again for the comments and support.

 

[90Nine]

Hi Lennie - I'm so sorry to hear about your son. It sounds like a horrible situation for you to have in your life.

By no means do I have the knowledge like others in this group, but due to the type of work I do I have the natural inclination to research the heck out of everything.

From what you wrote, it sounds like your son might not take the medication consistantly or at all. Also, the alcohol is awful for his situation. I know it makes seizures much worse and can counteract the effects of the medication.

From what I've read, my understanding is that people can be both bipolar and have epilepsy. Bipolar diagnosis have become as frequent as 'depression' diagnosis' have been. I believe its definition is the same as epilepsy in the sense that there are so many different ways it can present that it falls under an umbrella of a huge number of issues and not just one simple definition.

Bipolar disorder occurs in the same location of the brain as epilepsy, so there are some theories and studies that would suggest they are acutally the same thing (ie, bipolar is epilepsy (vs epilespy is bipolar) ). Hence, the same medications are used to treat both disorders.

I would almost suggest that your son inquire about the effectiveness of using medications such as Depakote or Lamactil that have been proven to help both Epilepsy and Bipolar diagnosis instead of Keppro which has shown to help mostly Epilepsy.

I know that most people that that fall into what you've described about your sons situation self medicate because of the symptoms from bipolar disorder. And honestly, bipolar disorder does not have to be obvious. It's not like what is portrayed in the movies. So the symptoms may not be a black and white diagnosis, especially is epilepsy is dominate in his situation. Most people with substance abuse issues respond greatly to treating the core issue that they have been self medicating. Hence, reducing or getting rid of the desire for the drugs and alcohol.

So, in summary, if you can, I would try to see what you can do about getting his medication changed.

And bless your heart for having to go through all of this.

 

[Crystal11]

It is extreamly frustrating to go through school, college, and life having small absence seizures and no one really know what's going on. Ive had those since age 6 and now have complex partial with a few absence seizures. It is aweful to know that I could have recieved additional support or help when I was growing up. I knew something was wrong, but didnt know what and never considered epilepsy.
Everyone take care

 

[Loudmouth]

I was diagnosed with epilepsy nearly 6 yrs ago, at the age of 22, just 2 weeks after the birth of my third child. All through my teen years, I had been sent to psychiatrists because I was saying that I would wake up in the morning, and the only way I could explain it at that age was that I felt like I was trying to walk uphill through treacle. from the age of 12, the psychiatrists kept telling me that I had depression, and even though I kept trying to explain that I felt happy, no-one would listen. Turns out that that is how I feel after a nocturnal seizure...I had had school reports saying that I was downright rude, ignoring teachers when they were talking to me, even got expelled from 2 secondary schools because of it...I didn't KNOW I was doing it!! That's now explained by the partial and absence seizures I have. It was only when I had the first 'big' seizure, and the doctors combined it with my previous history and tests that I got a diagnosis, I beleive that my epilepsy first showed its hand when I was about 11 or 12, so 10-11 years before diagnosis. My nan has epilepsy, she was diagnosed at 27, but believes it started years before. My 11 year old daughter has always had 'funny turns' but as I wasn't diagnosed till she was 5, epilepsy didn't occur to me until she started having longer absence seizures that were very noticable at age 9 and she was diagnosed at age 10. She's now 11 and a half and doing well managing her seizures through diet at present as don't want her to have to deal with SE's from meds until she absolutely has to as like my nan and I, it's highly likely that even with meds, her seizures will never be fully controlled. My nan's been trying for 60 yrs, me for 6, but at least the diagnoses are getting earlier with each generation. It's interesting the link with bipolar, as my dad died through his bipolar disorder (nan with epilepsy is his mum)(and can't really say more on subject of dad due to forum rules so please don't ask)