Looking for help

[occb]

*Long post. You have my deepest apologies and thank you to anyone who wades through it and even more thanks to anyone who could advise me*

It may or may not be appropriate for me to post here, but I have some questions that members of this forum might be able to answer, or guide me in the right direction.

I'm posting on behalf of my boyfriend who was diagnosed last year as "bipolar II with agoraphobia." The problem is even the psychiatrist admits his symptoms don't fit the categories very well -- he had symptoms from many categories, but these areas the doctor was able to check off more of his symptoms. He has exhibited these symptoms since he was a teenager. Lately I've begun to suspect he may suffer from a type of epilepsy (I know it's dangerous to self diagnose, but if his symptoms are familiar to anyone here, it may lend weight to convince him to go to a neurologist).

I began suspecting epilepsy when the other day we were getting out of the car and he went to unbuckle his seatbelt and froze. I called his name several times, but he didn't move. He says he was aware of my calling his name, but couldn't respond.

We began talking about it and here's a list of symptoms he's had on-and-off since adolescence:

Freezing and staring and being unable to "snap out of it"
Body jerks -- once he a had a persistent arm spasm and went to the doctor, but the doctor was unable to help him. It went away after a few hours.
Drops things. It's like his hands go numb and he just lets go.
He falls over for no reason. He says it's almost like he's pushed over because he can't stop himself from falling. I've come home and found mystery bruises which he can't remember getting.
Vivid dreams, night sweats. Sometimes he punches the walls in his sleep, and sometimes he will have full body twitches on and off for the whole night.
He's woken up to his arm straight in the air, and then accidentally punched himself in the face when he couldn't stop it dropping.
He used to see bright flashing lights in the corners of both eyes. So much so that he reacted to them.
He does have mood problems -- extended depression, extended hypomanic moods and aggressive moods (which he keeps under wraps very well)
His panic attacks were the severest kind, and last much longer than they should (hours instead of minutes).
He gets nausea, dizziness and sweats out of the blue. Most recently it was after taking tylenol 3.
He hears phantom sounds. He often asks if I called him, but I haven't said a word.
Sometimes he has problems forming words, or processing what people are saying to him. Sometimes he loses time, or is confused to the day or time.
Running away as a teen. He never knew why he ran, he just felt compelled to.

All this was prompted by him admitting to me that sometimes he smells burnt toast. It'll happen a few times in the day for a few days in a row, and then go away for a while.

He had all these symptoms before ever going to see a psychiatrist -- he first went for depression issues, but all antidepressants except Effexor worsened his panic attacks.

Last year he began lamotrigine, and he was like a different person. He was more aware and energetic, focused and mostly slept soundly. He rarely stared off, fell over less, had fewer jerky movements, his moods stabilized (it's prescribed for bipolar as well) and hasn't had a panic attack since.

Recently, due to a severe back injury, he was prescribed neurontin in conjunction with Elavil (for sleep) and some of the old symptoms came back with a vengeance, like the staring incident in the car. Recently he's been punching the walls again, sweating, grinding his teeth and once woke up to find his arm was in the air, and he couldn't stop it from crashing down on me.

Is it possible the psych got his diagnosis wrong? Has anyone else out there been misdiagnosed with a mental illness, when in fact it was epilesy?

 

[RobinN]

Just a quick grab of some articles that might be worth reading and sharing with your BF

http://www.nutramed.com/celiac/celiacbrain.htm
http://www.celiac.com/categories/Ce...enia-{47}-Mental-Problems-and-Celiac-Disease/
http://www.sciencedaily.com/releases/2004/02/040220081037.htm
http://www.drkaslow.com/html/gluten-brain_connection_.html

 

[Meetz1064]

OK

Please remember most of us, with one or two exceptions, are not medical doctors here.

HOWEVER, based on personal experiences, here is what I think:

The body jerks that you refer to, as well as the arm up in the air during his sleep, and the full body twitches all sound like myoclonic seizures/jerks.

The problems forming words, processing what's being said to him, as well as freezing & staring, and dropping things can be characteristic of partial seizures.

Falling over for no reason----possible side effect of the combination of the meds, but it could also be an atonic seizure.

Phantom smells, hearing things that no one else hears, tasting things that are not there (like batteries or something similar, or other odd tastes)--these are AURAS. These are also partial seizures.

Panic attacks, mood problems, and vivid dreams.........sound more like the effects of the meds. Sometimes they're tied to a specific form of E, but it's more likely that it's tied to the meds.

Regarding the running away.........I'm really not sure.

Regarding the flashing lights........he may have a form of photosensitivity. If that's the case, he WILL react to it, and it may cause a seizure, or some other reaction.

Here's what you NEED to do.

Get him into a neurologist ASAP. Ask for an EEG that is AT LEAST 48 to 72 hours long, and preferably ambulatory....that way, it can be done in his most natural environment, and his triggers can possibly make things occur.

ALSO, make him start a journal. There are a number of things that you need to put into this journal in order to really make it work, and to help him, and the doctors. If you'd like the list, let me know, and I will post it for you.

Do keep in mind that Lamictal (lamitrogine) is also used for bi-polar disorder, as well as E, which is why he did so much better on it....if he has BOTH, the Lamictal controlled both. I don't think Neurontin (also called gabapentin, I THINK) is meant for both. Neurontin IS used for neuropathy..or nerve pain, if I remember correctly, in addition to E.

BTW, Welcome to CWE. You'll find lots of information here, in places like the Library and the Kitchen, and the Padded Room is great for venting when you need to.

So feel free to kick up your feet, and feel at home. We'll be here to help you along the way.....and if we don't know the answer to a question, we'll do our best to point you in the right direction.

Take care!

Meetz
:rock:

 

[Cint]

It could be epilepsy in addition to mental illness. Plus, some medications for depression can lower the seizure threshold. Some people suffer from both of them.

 

[epileric]

Welcome OCCB

It does sound like epilepsy. I would recommend asking your doctor for a referral to a neurologist (if he hasn't already) & having the neurologist determine whether your boyfriend has epilepsy or not.

Also know that If the neuro starts prescribing medications, it can take a while to find the right one. Others can just worsen things (like the neurontin did).

 

[Crystal11]

I DEFINATELY would ask him to go to a neurologist. I have similar drop attacks/atonic episodes that I'm talking with my doctor about right now. I am seeing a neuro in a few months now that I have finally found one!
I have drop attacks and even had one of the stairs and almost hurt myself quite bad and it does scare me everytime it happens- it happes out of no where, under a second it feels like, and you don't know its going to happen or don't realize it did until your down or knocked over. It leaves you asking "what just happened?"
Smelling bad smells could be a sign of a complex partial seizure. I have those and do smell odd smells too.
Many of the things you have mentioned sound like atonic and complex partial seizures. But an EEG would show those or the waveforms that suggests Epilepsy.
PLease go to a neurologist and ask family doctor to refer him to one! I think its definately important. Also some of the medications could be helping him while others might be making things worse too, if it is Epilepsy.
Why hasn't he recieved neurological testing or EEG before? Just curious.
Please take care- and good luck with everything.

Crystal

 

[occb]

Thank you for all the info Meetz1064! I would deifnitely like the list things that would be useful to record, and I'm going to see if I can convince him to see his doctor about it.

I just wanted to mention that all of these symptoms pre-existed any medications he was on (they started in his adolescence, and he only began antidepressants in his twenties, and lamictal in his thirties). Now some symptoms seem to come and go depending on his medication levels.

Thank you everybody for responding. At the very least I know it's something that needs to be looked into, instead of just wondering about it.

 

[Meetz1064]

OK, here's

the list. But before I post it, I want to make another statement about the EEG. Please remember that the EEG is literally a "snapshot in time" of what's going on in the brain at the time that the EEG is being done. If seizures do not occur during the EEG, then that's the way it is, but it's not surprising. I've had E for almost 45 years now, and just had abnormal EEGs in the last 3 or 4 years. But there were plenty of eyewitness accounts about my E, including nurses and doctors..........

So, here's the list....it is extensive, so be prepared.

************

1. Sleep. List how much & when.

2. Eating. List how much, when & what. It's possible to have seizures caused by allergies to food.

3. TV/computer/video games. Yup, they can affect you if you're photosensitive, so list when, what, and HOW LONG.

4. Menses (for women). Start tracking your cycles. CATAMENIAL epilepsy does exist, sometimes it's tied to ovulation, sometimes its right at the TOM. Also, LADIES, DO get a thorough check of ALL your hormones done—female, thyroid, and any others. Believe it or not, they do factor in on seizures.

5. Stress List when it occurred, and what happened.

6. Exercise List what you did, when, and any reactions.

7. Seizures/auras. If you have either, DOCUMENT THEM. Auras--note what they're like--do you smell or taste something that others don't? Hear something? Seizures--how long, when, where, what happened. If you don't KNOW what happened, get eyewitness accounts when possible and DOCUMENT THEM. ****side note**** Auras ARE partial seizures!!!

8. Smoking and alcohol. Ditch them--both are neurotoxins for our brains.

9. Meds (of ANY kind). List the dosages, and when taken.


Responses To The Above List


1. You MUST get 7 to 7.5 hours of sleep as a MINIMUM, no ifs, ands or buts about it.

2. Eating--one of the other mods, Skillefer, (we call her Skilly), promotes eating 6 small meals a day, using a dessert plate, filling it with a carb and a protein. Good idea, I think. However, some people, like me are allergic to certain foods. You might want to look into various diets. Ketogenic, Modified Atkins, Low Glycemix Index, Gluten Free Casein Free (see www.dogtorj.com where the actual given name is GARD—it stands for Gut Absorption Recovery Diet).

3. Look into a glare screen for your computer or blue tinted polarized GLASSES (available by prescription from eye doctor). These can help cut down on seizures that are caused by photosensitive epilepsy.

4. GUYS--you may not have a cycle, but you DO have hormones. DO get your doc to do a full hormone screen, check thyroid, etc, just to make sure.

5. Use things like yoga, music, walking, whatever it is that you do to bust out your stress. Keep a separate journal to write in so that you can write out your feelings in--and keep it for your eyes only. Write it out by hand, two or three pages at a time. It helps A LOT. DO IT EVERY DAY.

6. REFLEX E can be caused by exercise, so DO track what you do. Keep in mind that you SHOULD NOT swim, bike, hike or bungee jump by yourself. Same goes for mountain climbing.

7, 8 & 9. 'Nuff said.

OK, the journal IS a pain in the arse. No doubt about that one. BUT it DOES help the doctors track things down.


****side note**** some people have found that the movement of their bowels also is a trigger for their seizures (sorry if TMI), so that is another thing that you might want to track, too.

****************************

I wish you the best of luck. E is not an easy thing to deal with at times. But, quite often, it can be managed......and you have us to lean on, too.

Take care.

Meetz
:rock:

 

[occb]

Why hasn't he recieved neurological testing or EEG before? Just curious.
Please take care- and good luck with everything.

Crystal

Heh, good question. The biggest reason why he hasn't gotten help before is because nobody believed him. He was... ahem... quite the delinquent when he was younger, and when he complained of the flashing lights, dizziness, nausea and staring fits, etc., etc., they all thought he was just causing trouble. Now that he's diagnosed with bipolar and agoraphobia, it's difficult to convince doctors to take him seriously. For example; he has a back injury that requires surgery, but it took a full year and visits to several doctors before one took him seriously enough to book an MRI.

The closest he got to neurological testing was when his last psychiatrist asked him during his assessment if he ever smelled burnt toast. My BF responded yes, and the shrink asked if he really smelled burnt toast, like it was all up in his nose, and it rattled my BF and he said, "I guess not." Shrinks make him nervous, so he sometimes doesn't disclose things completely, plus his memory is bad, so he forgets details.

 

[occb]

Thank you so much Meetz! That helps having a list of what to do. It'll take some weighty evidence to convince the doc to have someone look into it, hopefully a detailed journal will do.

I'll also follow up on your and Robin's diet information (although it'll be hard for him to suppress his sweet tooth for a while).

 

[Meetz1064]

You're welcome.

The more evidence you have to show the doctors, the better. It's the proof they need...........

Good luck!!!

:bigsmile:

 

[Bernard]

Hi occb, welcome to the forum. :hello:

Freezing and staring and being unable to "snap out of it"

http://www.epilepsy.com/epilepsy/seizure_absence

Body jerks -- once he a had a persistent arm spasm and went to the doctor, but the doctor was unable to help him. It went away after a few hours.
Drops things. It's like his hands go numb and he just lets go.

http://www.epilepsy.com/EPILEPSY/seizure_myoclonic

He falls over for no reason. He says it's almost like he's pushed over because he can't stop himself from falling. I've come home and found mystery bruises which he can't remember getting.

Is he stiff/rigid when he falls, or does he collapse with no muscle tone?

http://www.epilepsy.com/EPILEPSY/seizure_atonic
http://www.epilepsy.com/EPILEPSY/seizure_tonic

Vivid dreams, night sweats. Sometimes he punches the walls in his sleep, and sometimes he will have full body twitches on and off for the whole night.

FYI: http://www.coping-with-epilepsy.com/forums/f23/night-sweats-sleep-apnea-799/

He used to see bright flashing lights in the corners of both eyes. So much so that he reacted to them.
...
His panic attacks were the severest kind, and last much longer than they should (hours instead of minutes).
He gets nausea, dizziness and sweats out of the blue. Most recently it was after taking tylenol 3.
He hears phantom sounds. He often asks if I called him, but I haven't said a word.
Sometimes he has problems forming words, or processing what people are saying to him. Sometimes he loses time, or is confused to the day or time.
Running away as a teen. He never knew why he ran, he just felt compelled to.

http://www.epilepsy.com/EPILEPSY/seizure_simplepartial
http://www.epilepsy.com/EPILEPSY/SEIZURE_COMPLEXPARTIAL
http://www.epilepsy.com/epilepsy/epilepsy_temporallobe

All this was prompted by him admitting to me that sometimes he smells burnt toast.

The burnt toast smell hallucination is a very common aura.

http://www.epilepsy.com/epilepsy/auras

He had all these symptoms before ever going to see a psychiatrist -- he first went for depression issues, but all antidepressants except Effexor worsened his panic attacks.

Many anti-depressents are contraindicated for people with seizure conditions.

Recently, due to a severe back injury, he was prescribed neurontin in conjunction with Elavil (for sleep) and some of the old symptoms came back with a vengeance, like the staring incident in the car. Recently he's been punching the walls again, sweating, grinding his teeth and once woke up to find his arm was in the air, and he couldn't stop it from crashing down on me.

Sounds like he needs to get off this new med combo. :twocents:

He needs to see a neurologist and get some testing done. It definitely sounds like he could be experiencing seizures.

 

[Cinnabar]

Welcome occb

Many studies have been done connecting Bi-Polar and Dissociative Conditions to Temporal Lobe Epilepsy. I have the "three pack" and what you have to say does sound familiar.

But first, I'll address Bi-Polar II. It is very difficult to diagnose. Doctors will often dismiss a patient as soley having depression. Usually, the patient does not discuss the "happy moods". (Sometimes, always the bad news and never the good!) Unlike Bi-Polar I, some patients can go on living life without medication. But thereapy should be a requirement.

After my first seizure, I began having what you refer to as "phantom sounds".
My neurologist confirmed that this was a symptom of Temporal Lobe Epilepsy.

Before my episode I had and still have a degree of Agoraphobia. I've discussed this with my psychiatrist but never my neurologist. Thanks to your post, I will be calling my neurologist to see if there is any connection. Thanks!

As Meetz said, Lamictal is a medication which covers both Epilepsy and Bi-Polar conditions. I've been on it for some time and have been very satisfied. If it is ever prescribed, I would suggest making sure you get the brand name. Everyone is different, but there are more side effects with the generic.

occb,you will find allot of information here as well as great support! Many of your guy's symptoms sound like they're Epilepsy related.

I strongly advise you to find a neurologist... A plethora of information to be found here. Members with phenominal background, having studied all the different forms of Epilepsy. But no one here is a doctor.

You might want to be present as some of his symtoms seem to challenge his cognition. Because he has so many symptoms, I would also suggest writing them down before taking him to the neurologist. Also, bring a pad and pen and write down what the doctor has to say. Sometimes, doctors rattle off. So, don't be shy and ask him/her to slow down if necessary. Remember, you "hire" the doctors. They're working for you. Please keep us up. You're managing much! And we're here to support "you" directly. Peace, C -

 

[Loudmouth]

I was misdiagnosed as having depression for about 7/8 yrs through adolescense until I had some pretty major seizures at 22, and it's only got worse since. The lamactil seemed to be helping him, could he go back on that? Also neurontin (gabapentin in the uk) is what I'm being treated with, but if he's taking that possibly his dose is more at the levels they would use for nerve pain rather than seizures...I am taking 1200mg/day and still need an added med as the gabapentin (neurontin) helps with the 'drop attacks' but not with the complex partials (the other symptoms you describe). As lamactil has helped those in the past in your BF's case, maybe he should discuss with the neuro about the possibility of combining neurontin and lamactil to acheive a better chance of controlling both types of seizure (if that's what it is). I would advise also trying to cut out MSG and aspartame, I've found it helps a lot. I had all the odd symptoms you are describing here (apart from the burnt toast smell, but I'm aware that some people smell things before a seizure) and was sent to numerous psychologists but never got any real answers until I was sent to the neuro in my 20's. Hope your boyfriend gets some answers soon, and you are both in the right place for support here!

 

[occb]

Hi Loudmouth,

He's on both the lamictal and the gabapentin right now (one for bipolar and one for nerve pain from his back injury). Your situation sounds very much like his (initially being diagnosed as having major depression), except he's never had a major seizure, which may be part of the reason why he's never been diagnosed as having epilepsy.

The more I read about it, the more convinced I am that he does have some form of epilesy and that he needs to be checked out. The stuff about photosensitivity is spot on. He's always hated sunlight, even as a little boy -- he says it makes him feel "disgusting". He's told me repeatedly that blue light is soothing to him, patterns "hurt his brain" (especially stripes and wallpapers) and he dreads even the thought of being around flashing lights.

Cinnabar -- thanks for the additional info. It's interesting that my fumbling has given you the idea to talk to your neurologist about your agorahobia. Let me know what comes of that.

Bernard -- thank you for the info and links. I wondered about the sleep apnea thing too -- it's one more thing to look into. I'm keeping an eye on him and starting to record anything that might be important (as per Meetz's list). He only takes the Elavil (which is an antidepressant) for sleep purposes, but if he continues to have disturbances in his sleep, I might encourage him not to take it and then see how what night time is like.

 

[occb]

So now the whole story comes out -- my bf tells me he has seen several psychiatrists (which I knew) all of whom suggested he might have epilepsy (which I didn't know), but my boyfriend always denied ever having had a seizure, because he didn't know what seizures could look like, or couldn't remember having had them.

Why would doctors just take his word for it? If they had only described an absence seizure or simple partial, he might have been saved a lot of grief. Yeesh! Having had these symptoms all his life, he didn't know they were abnormal. They always only treated the emotional disturbances. We're just piecing it all together now.

 

[Nakamova]

How frustrating. But it's great that you and your bf are starting to figure it out now. Most people still believe epilepsy is only what they see on TV ("flailing and frothing") and have no idea of all the other varieties out there.

 

[occb]

Flailing and frothing is exactly what he thought a seizure was, because of a TV show. I recognized his absence seizure because of a different TV show

Yay for Degrassi Jr. High!

 

[RobinN]

Keep in mind that Epilepsy is a label, which means that you have had two or more seizures. It is not a disease or an illness unto itself.

The seizures are a symptom of something else occuring. Some people can narrow it down as to WHY this is happening. Others can't. The journal, or calendar like I use to mark info on, is very useful over time to see patterns.

You say he has a sweet tooth. It may seem odd, but that could be an indication that his gut is not well. Could be an over abundance of fungal growth, which can cause neuro issues. Conventional doctors don't look down this path, however there are many alternative doctors that are achieving great results by healing the gut.

 

[occb]

Keep in mind that Epilepsy is a label, which means that you have had two or more seizures. It is not a disease or an illness unto itself.

The seizures are a symptom of something else occuring. Some people can narrow it down as to WHY this is happening. Others can't. The journal, or calendar like I use to mark info on, is very useful over time to see patterns.

You say he has a sweet tooth. It may seem odd, but that could be an indication that his gut is not well. Could be an over abundance of fungal growth, which can cause neuro issues. Conventional doctors don't look down this path, however there are many alternative doctors that are achieving great results by healing the gut.

Thank you for the info. I will definitely look into the possibility of fungal growth and alternative medicine.

I do know he has food sensitivities, and we're exploring the possibility that his seizures are digestive tract related, since a number of his symptoms are abdomenal. I'm also positive that it's an inherited issue. His father and grandfather have "spells" as well, only less frequent and way less severe. I also know his diet when he was growing up was horrible, which may explain why many symptoms seemed worse when he was younger (I cook from scratch most of the time and it's helped him a lot).