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[jensenta]

About 10yrs ago I started experiencing odd smells, tastes and a very minor buzz or pressure inside my head. After consulting with physicians and since nothing showed up on the tests I was informed that I was imagining things. So I chose to ignore it which, worked for about 6yrs. That was 4 yrs ago. Then I started experiencing major memory loss. As a project manager I would hold meetings to track the progress of my projects and hand out assignments. I found that my staff was reporting back to me on things I had no clue what they were talking about. There were other clues as well, for one my wife on more than one occasion would insist we had seen a movie that I could not remember (apparently we ended up seeing of these several times). The memory loss became more sever as time went on so like any person I started again to try and find out something and like before initially everyone said seizures but nothing showed up on the EEG, CAT scans, MRI any other tests. So, once again it was suggested that this was a psych problem so I little choice but to investigated that angle.

During this time I also started experiencing that buzz in my head again (or at least I started noticing it again). As time went on the buzz became more of an electrical shock and I started to become confused at the same time. Sometimes I would experience sever headaches and other times I would just forget things. I realized that this was affecting my job and for a while all I could see was my career going down the tubes and there was little I could do to stop it. Nobody was giving me any answers and I knew my employer would only tolerate this for so long.

If the episodes weren't bad enough I became depressed and anxious about everything which only fueled the psych explanation. I was finally offered a chance to take disability for psychological reasons which I took but I never for once believed it. There was no reason for it, up until this started becoming a problem I had a great job, a wonderful wife and family and an active, productive life. There wasn't any psychological reason that was presented that made any sense to me but nobody would listen. The only good reason for accepting the disability was that it would give me time to explore what was happening to me.

Then after about a year working with a psychiatrist on a regular bases he finally saw one of my episodes occur as I sat there right in front of him. Once that happened he was convinced that this was a neurological problem. Unfortunately, when I told this to any of the neurologists that I went to see none of them would agree. One of them even listened for less than 10 minutes but once the word psychologist was out of my mouth he informed me there was nothing he could do. He insisted I see a neuro-psychologist which ran me through a battery of tests (again) which were inconclusive since a episode didn't occur during testing. For 2+ yrs I've been stuck between both medical camps each pointing fingers at each other and saying this is your problem, but none of them would talk directly with each other. I was the only line of communication. And, in the mean time all I could do was nothing but wait and hope the episodes would happen more frequently and/or more severely when someone qualified was looking.

Finally, about 5 weeks ago I finally got my psychiatrist to write a signed formal letter stating that my condition was a neurological problem not a psychological one which I took back to another Neurologist. That along with a journal my wife has been keeping for the past 2 -2 1/2 yrs with her observations of my episodes finally convinced this neurologist to start treating my condition as partial complex seizures. According to her it is not uncommon that seizures are not proven during any of these tests since a seizure has to occur during the test to show anything.

Does it really have to take 10yrs to get someone to listen??? I'm hoping that the medication I've been given will stop this or at least allow me to live a somewhat normal life. Unfortunately, it not clear to me, yet as whether some serious damage hasn't occurred. I try to remember what I use to do as a project manager or software engineer and I can barely remember that I did that for 20yrs. Will some of the memories come back or do I have to completely start over?

 

[occb]

Welcome to the forum jensenta!

Your post gave me the willies, because so far we've spent 8 months trying to get docs to pay attention to partner's episodes, and right now we're in the p-doc says see a neuro and the neuro says the one-hour EEG was neg so it's not my problem situation, and a GP who won't let go of an old psych assessment even thought the new assessment with a team of psychs gave my partner clean bill of mental health. Ugh, 10 years?! Utter rediculousness!

I don't know if some of your memory will come back. I hope it will, but the meds also make you forgetty. I can't imagine how that makes you feel -- it's like having lived a different life in a dream.

 

[RobinN]

jensenta - welcome to CWE.
A diagnosis of neurological issues is extremely difficult. Many times it is wrong, and there are differing opinions depending on who you are being treated by.

I am curious if you ever have tried magnesium. There have been success stories as research has shown that most of us are deficient. It helps with tinnitus, and is also considered an anti-convulsant. I personally was helped by taking it after 30 yrs of migraines (now classified in the seizure family).

Other supplements that support brain health are Fish Oil, Vita B complex, Vit D, Vit E

It is just a suggestion, and one that you should research on your own.

I am glad that you have found a neurologist that is willing to look at the bigger picture. That is a good first step.

I am glad that you decided to join us here.

 

[epileric]

Welcome jensenta

As you can see you're not the only one who's had trouble trying to be acknowledged by the neurological community. I was lucky to have a parent in the medical profession who recognized a partial seizure as soon as he saw me have one. Despite that, after 39 years of being on ant-epileptic drugs & having numerous seizures a neurologist decided I wasn't epileptic after talking to me for 10 minutes. Lucky for me the next neurologist sent me for tests that found the cause of my seizures.

For my memory I know it's bad but I do some things to compensate like always carrying a pen & paper to mark things down & getting in the habit of checking lists (what to do today, what needs to be put on tomorrows list, etc). On the upside, I can watch TV re-runs forever & not get bored.:banana:

 

[jensenta]

Welcome to the forum jensenta!

Your post gave me the willies, because so far we've spent 8 months trying to get docs to pay attention to partner's episodes, and right now we're in the p-doc says see a neuro and the neuro says the one-hour EEG was neg so it's not my problem situation, and a GP who won't let go of an old psych assessment even thought the new assessment with a team of psychs gave my partner clean bill of mental health. Ugh, 10 years?! Utter rediculousness!

I don't know if some of your memory will come back. I hope it will, but the meds also make you forgetty. I can't imagine how that makes you feel -- it's like having lived a different life in a dream.

I know exactly what you mean about living in a dream. As you can see this can be a painfully long road. I hope that you don't have to spend that long getting an answer. One suggestion I would make is to get your psych team to put it in writing clearly stating that the problem is neurological. Also, if you haven't done it yet start right now keeping a detailed journal. I never would have been able to do that myself with the memory loss and confusion but my wife was very good at writing down everything. I think those two things are what has made all the difference this time around. Good luck!!!

 

[Nakamova]

Hey Jensenta, welcome to CWE --

I'm sorry the process of getting a diagnosis has been so hellish. Unfortunately it doesn't seem that unusual. Many docs rely heavily on tests like EEGs and dismiss patient reports of their own symptoms.

Now that you're finally getting treatment (yay!), keep that journal going so you can note any changes that the medication may produce. In addition to tracking seizures and any side effects, you may note as well improvements in memory. It's also worth looking for any triggers that seem to exacerbate the seizures or may have contributed to them in the past. Things like fatigue and diet can play a role, as well as environmental stressors (like flashing lights) and psychological stressors (dealing with unresponsive doctors).

It's too soon to know what the scoop will be for your memory. Some memories may be there, but the retrieval system may be flabby. Or the memories may have not have been properly encoded in the first place because of the misfiring of the brain (Think of trying to recall dreams from ten years ago. Or a week ago. Or last night). Fingers-crossed that you feel the difference at the your memories form here on in are positive ones.

Best,
Nakamova

 

[jensenta]

jensenta - welcome to CWE.
A diagnosis of neurological issues is extremely difficult. Many times it is wrong, and there are differing opinions depending on who you are being treated by.

I am curious if you ever have tried magnesium. There have been success stories as research has shown that most of us are deficient. It helps with tinnitus, and is also considered an anti-convulsant. I personally was helped by taking it after 30 yrs of migraines (now classified in the seizure family).

Other supplements that support brain health are Fish Oil, Vita B complex, Vit D, Vit E

It is just a suggestion, and one that you should research on your own.

I am glad that you have found a neurologist that is willing to look at the bigger picture. That is a good first step.

I am glad that you decided to join us here.

I've tried every natural supplement that was ever suggested so while I don't remember the specifics I'm sure somewhere along the way I did try those. My wife made sure I tried most of them for at least three months but there was never any indication that any of them made any real difference, but thanks I'm willing to try just about anything

 

[jensenta]

As you can see you're not the only one who's had trouble trying to be acknowledged by the neurological community. I was lucky to have a parent in the medical profession who recognized a partial seizure as soon as he saw me have one. Despite that, after 39 years of being on ant-epileptic drugs & having numerous seizures a neurologist decided I wasn't epileptic after talking to me for 10 minutes. Lucky for me the next neurologist sent me for tests that found the cause of my seizures.

For my memory I know it's bad but I do some things to compensate like always carrying a pen & paper to mark things down & getting in the habit of checking lists (what to do today, what needs to be put on tomorrows list, etc). On the upside, I can watch TV re-runs forever & not get bored.:banana:

I've tried the pen & paper approach but one of the things that I found was that I couldn't write things with enough detail quickly enough so that when I needed to refer back to those notes none of what I had written made any sense. I then tried taking a small recorder and recorded everything. The problem there was it was too much material and people tend to get a little uncomfortable when you record around them. Unfortunately, I've never been able to find anything reliable in between. But, your right about one thing reruns are pretty much a thing of the past for me.

 

[Endless]

Hi, Jensenta, and welcome!

Boy, does your story sound familiar. I had a hard time getting the correct diagnosis, too. About 40% of people with epilepsy have a negative eeg. So don't let that phase you. Here's an explanation of why: Negative EEG's

I had been struggling with the best way to keep a seizure diary, too. I have a little notebook I use, or use the recording function on my cellphone, then during the day or at the end of the day transcribe it into seizure tracker (www.seizuretracker.com), and then erase or destroy notes or recordings so it's just in one place. It's too easy for me to get confused if I've got it in a bunch of places. And it's too hard for the doc to process unless it's in calendar form & typed. (You should see my handwriting!)

This seems to work for me, but everybody's different. After awhile you'll find what works best for you, too.

 

[occb]

I know exactly what you mean about living in a dream. As you can see this can be a painfully long road. I hope that you don't have to spend that long getting an answer. One suggestion I would make is to get your psych team to put it in writing clearly stating that the problem is neurological. Also, if you haven't done it yet start right now keeping a detailed journal. I never would have been able to do that myself with the memory loss and confusion but my wife was very good at writing down everything. I think those two things are what has made all the difference this time around. Good luck!!!

I'm already in the diary :lol: I keep it here so I can update it no matter where I am (although,admittedly, we've been a little slack this week. Since the experiences are daily and confusing, it gets a little wearing). That was probably the biggest reason the p-docs recognized what he was exeperiencing as neurological.

The psych team actually sent the GP a recommendation of a referral to a neurologist, but the GP doesn't want to let go of the psych angle for some reason. He's our biggest obstacle right now, and switching docs may lead to several months of no GP, which wouldn't be good. We'll get him on board, I think, if I go in and give him all the info he needs (he's more lazy than anything else. So if I do the work, he shoud, follow through. Should...)