New here...Hello and I hope you can help me?!

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Joanie2
New Member


Date Joined Jul 2007
Total Posts : 3
   Posted 7/12/2007 2:41 PM (GMT -7)   

Hello to everyone :)

I'm hoping by posting this lengthy (sorry) letter that someone might be able to advise me or tell me if they have similar symptoms.

I am also starting a diary to see if I can figure out how its triggered

Recently my daughters bf was diagnosed with Epilepsy. To become more familar with this, I started reading online only to find that many symptoms that

were described were similar to what I've been going through for many years. I am definately not a hypocondriac...but for years have been trying to get

answers to what I go through. Recently I was checked for Diabetes and Thyroid. I have been checked in the past for restless leg syndrome and do have that.

The only answer I have gotten is that I have Panic/Anxiety attacks, restless leg syndrome and possibly Traumatic Stress. I honestly think myself, that I have these

weird symptoms and that makes what makes me feel the panic/anxiety.

I do recall times when I was young that I would have a weird visual when lying in bed...it was a huge rock that would come rolling down our hallway towards

my room. Geez writing that is hard...I feel like I am nuts. It was so vivid, it was 3 dimensional. Other then that, I can't remember anything else that would seem like a symptom. Perhaps there was but I've forgotten. Unfortunately my parents and sibling have passed away so I have no one to ask. Oh and lol this was way before Indiana Jones :)

The first time I really remember this all starting was about 18 years ago when I was with my husband on a Reno trip.

I was stressed but excited as well, because it was our first trip together since we'd been seperated for a short time. Lack of sleep, lots of caffeine & alcohol and slot machine playing started giving me these strange feelings while we were there. I remember having dinner one night after having a day of feeling totally like everything was surreal or foggy and I kept getting this overwhelming feeling and visual of back handing hubby. I had a sick feeling that I was also going to yell out loud.

This feeling of strangeness still occurs occasionally but has been better with Effexor which was prescribed for depression in 2005. I have also been on Xanax for many years. Every once in awhile I still have this visual if I am feeling funny and I even visulize doing this to complete strangers.

-lights suddenly get brighter and brighter then go back to normal. Looking at bright coloured clothing, like neon solids makes this happen also.

-when walking I sometimes feel like the floor, ground etc is squishy?? mainly this feeling is in my right foot and leg.

-tingling on lips,tongue and chin to the point where my lips feel chapped.

-upper body feels hot, especially my face will feel like its burning.

-both hands shaky, twitching index finger or thumb at times.

-distorted vision...things appear foggy and surreal. This creates a sick feeling in my stomach. Hard for me to talk directly to someone during this..I will feel like I'm going to burst into tears for no reason.

Also during this time I get the nausea, slight headache which comes and goes and feel like I'm walking off balance and leaning towards the right.

-feelings of electric zaps which go through my head and immediately down my arm to hands and also into my feet. Walking or turning my head causes this. Its almost like a strobe light effect but comes with the electric zap feeling. I know this feeling can posibblt occur if you miss taking Effexor on time, but that is not the case for me.

-sometimes as I'm falling asleep I get this rushing sense of doom or death. Also have experienced feeling my body is rocking back and forth..I guess I am half asleep but can still feel this motion.

-I also have racing thoughts in my head when trying to get to sleep if I am having a spell...I can't seem to connect the thought though. Not sure how to explain that any better.

-some nights when half asleep I continually swallow like I'm trying to clear something out of my throat.

Thanks so much for reading this and I hope you can help.

Take care!!


djdaz_1985
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Date Joined Jan 2006
Total Posts : 2408
   Posted 7/14/2007 6:00 AM (GMT -7)   
Hi there and Welcome to Healingwell! yeah
 
hmmm... I can relate to some of these things but not all of them. The tingling lips, burning head and shaking hands/twitching thumb are all things I have experienced. I cant say that I remember then happenig since becoming epileptic but thats not to say they didnt happen. I dont get them all at the same time so this might be something different to you. I can usually come up with a simple explanation for mine. For example my shaking hands are usually better after I eat... hence its probably a low blood sugar issue. (I am not diabetic but my blood sugar is a bit erratic sometimes!) Have you thought about the sort of things that makes them go away? Perhaps this is a key to what the cause is.
 
Best Wishes
 
Darren
Everyone has a guardian angel. They help pick you up when you fall, comfort you through your times of need and help you appreciate the times when things are going well.
 
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Joanie2
New Member


Date Joined Jul 2007
Total Posts : 3
   Posted 7/14/2007 9:04 AM (GMT -7)   

Hello and thanks for your reply Darren :)

I think the shaking hands might just be a nervous reaction to the odd symptoms I feel at the time. Not all of the things I mentioned happen together..I might have 3 or 4 things at the same time. I feel like I've been spending years trying to diagnose myself and its so frustrating :(  Feeling perfectly fine and then having some of these awful symptoms hit me out of the blue just doesn't make any sense. Though the Dr. says panic/anxiety attacks, after reading others posts on that or websites pertaining to that specific info, I can't relate to alot of those either, so I am kind of in limbo here. I believe I am getting over stimulated in situations..like being overly excited (in a good way over a vacation etc.) or having major hysterical laughing fits with my co-workers. We have a great time at work so this to me doesn't indicate a panic attack. I've also noticed that motion such as walking in large crowds or cars moving past makes me feel fuzzy in the head. Being a passenger in a car is pure hell at these times..looking out the side window.UGH..well its just way to much for my brain to handle and the foggy weird feeling happens. Anyways, I am starting to seriously keep track of what goes on during my day and what sets off the different things.

Thanks again Darren and have a wonderful weekend!


djdaz_1985
Veteran Member


Date Joined Jan 2006
Total Posts : 2408
   Posted 7/14/2007 9:43 AM (GMT -7)   
The car window thing sounds quite normal unless I have misunderstood what you are saying. I get the same feeling and so does my sister. Have you considered hyperventilation as a cause? If you are getting very excited or very anxious you will breathe more often and deeper, increasing the amount of blood oxygen going to the brain. For me, hyperventilation can trigger a petit mal seizure and will very often leave me with a tingling feeling in my fingers. If you are pumping increased amounts of blood oxygen into your brain and it doesnt want it, its liable to get a bit brassed off! (So to speak!)  
Everyone has a guardian angel. They help pick you up when you fall, comfort you through your times of need and help you appreciate the times when things are going well.
 
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Co-Moderator - Depression Forum
 
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Joanie2
New Member


Date Joined Jul 2007
Total Posts : 3
   Posted 7/15/2007 12:01 AM (GMT -7)   

I think its watching scenery out the side window that bothers me, so maybe its the motion thats over stimulating my brain?!? If I've been in crowds where people are moving past me I feel odd as well. Off balance and fuzzy in the head.Hyperventilating hasn't been a problem with me. Its just so darn frustrating feeling these things and not feeling you've gotten the correct answer :( 

The last 2 days have been absolutely fine..no problems at all at work or after. Thats why I find it hard to believe its anxiety or panic related. Nothing happened any different the last couple of days to other days when some of the symptoms I described just appeared out of the blue. Hopefully I can find a pattern to the symptoms, so I can go and talk to my Dr. and not sound like a hypocondriac. How sad when you start hoping for an answer instead of being happy that your thyroid is normal, you don't have diabetis etc.

 Thanks again for your reply and suggestions Darren, I appreciate it :)


djdaz_1985
Veteran Member


Date Joined Jan 2006
Total Posts : 2408
   Posted 7/15/2007 1:27 AM (GMT -7)   

Sorry I cant be of more help to you. Making a log of the symptoms is a good idea. When you go to see your doctor, dont just tell him what the log says, actually show it to him. It may be that he requests to take photocopies for your medical records. I can understand wanting a diagnosis. If you have a diagnosis, you know what you are up against rather than the big unknown. As well as that, if you know whats going on, you might be able to solve the problem or at least stop it getting worse. Maybe someone else on here has some ideas.

Best of Luck

Darren


Everyone has a guardian angel. They help pick you up when you fall, comfort you through your times of need and help you appreciate the times when things are going well.
 
Moderator - Epilepsy Forum
Co-Moderator - Depression Forum
 
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CharleyRice1931
Regular Member


Date Joined Apr 2006
Total Posts : 397
   Posted 7/24/2007 6:08 AM (GMT -7)   
Hi I'm from the Alzhermer's site. Can anyone tell me if it could have been Epileptic fits/seizures that my wife had in the past year? She's suffered with AD for the past 12yrs. She's been unable to move or talk (body rigid) for more than 4yrs. There's no history of seizures or Epilepsy until this past year. There've been four attacks. The first three happened at about 12week intervals, the last about six months ago. A lot of tests have been carried out and the best the experts came out with was "probably Epilepsy" that by a Consultant Clinical Neurophysiologist.
Is it unusual there can be a gap of six months between attacks?
So far I have used just the one tube of Diazepam which were prescribed by her Doctor. She also advised me to give her aspirin which I'm not willing to do.
I'm happy with the knowledge I've discovered about her Alzheimer's by cargiving 24/7 365days yr., and am coping very well. Epilepsy if it is that, I need to understand, for to me understanding removes the fear of the unknown.
I'd welcome your input thank you. Padraig

djdaz_1985
Veteran Member


Date Joined Jan 2006
Total Posts : 2408
   Posted 7/26/2007 1:47 AM (GMT -7)   
Hi Padraig,
 
hmmm... Its difficult for me to say if it is or isnt epilepsy or not. When you say attack, what do you mean? Does her body shake? Is she unresponsive? If a consultant clinical neurophysiologist says it is probably epilepsy, then I am inclined to go with him. (For the moment anyway!)
 
Epilepsy is something that can (in a lot of cases) be controlled very easily using anti-convulsant meds. (Such meds include: Lamictal, Tegretol, Keppra, Epilim etc...) Finding the right med to suit your wife can take some time. There is little science to it, just trial and error. Keppra and Tegretol are quite popular at the moment and Epilim is quite old fashioned.
 
Very simply put, epilepsy is caused by an overload of electricity the brain. The brain then needs to "reboot" in a similar fashion to a computer in order to dispell the electricity. (Only its usually much quicker). Once your wife has re-booted, she may be very slow to respond, her speech may be slurred, her muscles will be very tired and there may be some incontinence. This is more common in the case of Grand Mal Seizures. Petit Mal seizures (or sometimes called absences) are short periods of unresponsiveness. There are very few after-effects (As a general rule).
 
As for having 6 months between attacks... it is a distinct possibility. Have you been able to have an EEG performed given your wifes condition? That would almost definately prove it one way or another. A 24 hr EEG machine could be taken to your home and wired up very easily. It is only a series of electrodes (I think there are around 15) connected into a small box (about the size of a lunchbox). This is something you would have to talk to a doctor about doing if you wanted to.
 
I hope this information is of some help to you.
 
Darren
Everyone has a guardian angel. They help pick you up when you fall, comfort you through your times of need and help you appreciate the times when things are going well.
 
Moderator - Epilepsy Forum
Co-Moderator - Depression Forum
 
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CharleyRice1931
Regular Member


Date Joined Apr 2006
Total Posts : 397
   Posted 7/27/2007 5:57 AM (GMT -7)   
Hi Darren, Sorry I didn't explain about my wife, all details are on the Alzheimer's site. She's had Alz for 12yrs and entered the 'end stage' about four years ago. I removed her from a NH, 4yrs and 4months ago because I was losing her. She's been doublely incontinent for more than seven years. She was not expected to live overnight in July 2033, due to loss of weight, pressure sores and not able to eat. it was my chose to care for alone. Though she's rigid and has said only one word in all these years, she is in good health as I've get her back to eight stone plus, from under six.
These seizures only started in the past year. To answer your question, yes her body shakes, plus she foams from the mouth as she blows from the mouth. There's no response. What I failed to tell you is that I suggested to the Consultant that it may have been due to a shock. She sleep a lot and I'd noticed when I woke her she would look around as though looking for someone or place. The first time it happened I could see fear in her eyes before the shaking started. He agreed that my reasoning could be correct. That is to say she had a bad dream relating to a past event in our lives, like seeing our young daughter laying dead on the roadside.
She's had a EEG, blood test, X-ray, ECG etc but I've had no clear answers, but then I'm use to that by now. The problem is, she's in an unknown place having escaped the 'end stages' of Alzheimer's. Since she recovered from the illness caused by the lack of knowledge on proper care required for an AD victim, I stopped all medication. I've adjusted my approach when waking her to help avoid a repeat of the seizures. Thank you very much for your information on Epilepsy it's most helpful. Padraig

djdaz_1985
Veteran Member


Date Joined Jan 2006
Total Posts : 2408
   Posted 7/28/2007 1:01 AM (GMT -7)   
Hiya,
 
It sounds likely to be epilepsy from what you have said. Although there are many other factors to consider such as any meds she is taking, her AD, etc... If I was in your position and a doctor said it was epilepsy, I probably wouldnt think to question it. From what you describe, it sounds like grand-mal seizures. Foaming at the mouth can happen since there is little/no muscle control during the seizure.
 
Keep us posted on how you and your wife are getting on.
 
Best Wishes
 
Darren
Everyone has a guardian angel. They help pick you up when you fall, comfort you through your times of need and help you appreciate the times when things are going well.
 
Moderator - Epilepsy Forum
Co-Moderator - Depression Forum
 
Help support the forums so we can support you:  http://www.healingwell.com/donate
 


CharleyRice1931
Regular Member


Date Joined Apr 2006
Total Posts : 397
   Posted 7/30/2007 7:20 AM (GMT -7)   
Hi Darren, In answer to your question, no she's not on any medication. She was given a lot of medication while in a nursing home, but that was four years and four months ago, when I removed her. Once home, I stopped all medication other than that required to relieve pain for her physical condition. Once she was back to health there was no requirment for medication. It must be about three and a half years since she's had any medicine.
She was prescribed Diazepam tube in Jan of this year, one of which I used in early Feb during her last attack, nothing since and she's been well to date.
Not knowing anything about Epilepsy I thought it strange that the three attacks came at about 12 week intervals then nothing up to now.

Thank you for your help, will keep you informed if and when she should have another attack.
Padraig.

djdaz_1985
Veteran Member


Date Joined Jan 2006
Total Posts : 2408
   Posted 8/1/2007 1:27 AM (GMT -7)   
Epilepsy has a nasty habit of disappearing into the background and then sneaking up on you when you least expect it to. If I stopped my meds today, it could be 6 months before I have a seizure. But then I would have 2 - 3 in the space of a week and then it might stop for a few months. This is perfectly normal
 
Darren
Everyone has a guardian angel. They help pick you up when you fall, comfort you through your times of need and help you appreciate the times when things are going well.
 
Moderator - Epilepsy Forum
Co-Moderator - Depression Forum
 
Help support the forums so we can support you:  http://www.healingwell.com/donate
 

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