please help my mom

worriedaboutbev · 05-04-2004, 11:01 PM

Hello! I am new to the message boards and praying that I might find some answers and help for my mom here. I am very worried about her and doctors cant seem to find out what is wrong with her. This has been going on for almost 3 years now, she is fine as long as she is sitting, but as soon as she stands she has what we call "spells" she gets very light headed or dizzy, she has to hold on to something , her knees shake and her hands shake (she looks like a drunk person when she has these spells) she has at least one a day and sometimes up to 6 or 7, it is really taking over her life and we are all scared to death. She had ECT (Electrical Current Treatments) about 3 years ago, she also suffered from a great loss (my grandmother died) seems this started the day she died she suffered from her first "spell" that day, she has lost her short term memory and her long term isnt very good either. She has had almost every test imaginable the next test will be a MRA. Here is a list of medications she is currently on: seroquel, celexa, xanax XR, wellbtron XL, topamax, atenolol, bumetanide, prevacid, pothloride, magoxide, sptronolact, magnesium, celebrex I hope I havent left any out. If anyone has had any of these symptoms or knows of some information that I need to read...please, please reply or e mail me!!!!!! A few of her health problems are sleep apnea, throyid, kedney faliure, mental illness, low potasium and her latest medication is for seziures. Again any information is greatly appreciated. May God bless and keep you

Angel77 · 05-04-2004, 11:14 PM

Hi worried, it sounds as if your mom may be experiencing something called cataplexy. It's related to narcolepsy, another sleep disorder and is also known to be a common combination w/ apnea.

Do her spells seem to be triggered by a strong emotion, extra stress, physical exertion or anything like that? I have only had a couple full blown drop attacks, but would get the shakes like you're talking about. It's also worsened during the sleep attacks. They aren't what people think they are. It's like taking a lot of sleeping pills and trying to stay awake. You not only look drunk, you talk like it too.

I also have a brain injury and it can act this way as well. Check out head injuries and post-concussive syndrome. It's all scary, I know. But you're on the right track I think.

Also, does your mom have any other weird symptoms that don't seem related to any of her other known conditions? Check on the sleep disorders board under some posts about narcolepsy. Also, look under symptoms of sleep deprivation. I couldn't figure out why I felt some of the odd things I did, until I looked it up. Narcoleptics also suffer from this. There are also many common ailments that seem to run hand in hand with it, including: hypermobility syndrome, fibromyalgia, chronic fatigue, migraines, and some others that aren't clicking right now.

There is a blood test, but it isn't 100%. I'll find out the exact markers and post it back.
I'm going to post this for now, it's not finished, but my brain isn't working that great right now. I'll check back in a few, and feel free to ask any questions you think I may be able to help with. I'll do what I can. Talk to you later.

Take care of yourself and know how lucky your mom is to have a daughter that cares so much. God bless both of you.

quincy · 05-04-2004, 11:15 PM

OMG!! Has the same doctor given her all these meds?

Is it possible she had a small stroke?

Has your mother had the opportunity to do physical therapy or something like that?

I wouldn't doubt that some of the meds can cause her memory loss, as well as the anxiety of not knowing what's wrong with her can create memory loss. Has she dealt with the loss of her mother... as in having grief counselling or a group counselling that helps people deal with multi-disorders?

The many medications she's on would probably have some effect on her balance/blood pressure.

What meds was she on at the time of her mother's death? What physical disorders did she have at that time also?

She certainly has an incredible amount of physical/organic disorders to deal with. It must be painful for you to see her go through this.

How many doctors has she dealt with? Has she been to the Mayo Clinic or a place like that where one place can deal with all her problems?

My best to you both,
quincy

worriedaboutbev · 05-05-2004, 12:05 AM

Angel77, I want to thank you for taking us seriously, not too many people do and it gets aggravating, not even the doctors take her seriously she has had a "spell" in front of a couple of the doctors and she feels that everyone thinks she is making this up, I have seen the "spells" and there is no way anyone could act that good. What are some of the (odd) things you feel ? I think I will do some research on the Mayo clinic and see if I can get her in there for some test. To answer some of the other questions...she has been to atleast 15 different doctors which each of them will take her off of one med and put her on two, I dont like her on all of the meds she is on but they seem to think they will help her. Her first "spell" when her mother died she was on about the same meds she is on now give or take a few, she had just got out of the hosptital for a nervous break down, she has been hospitalized for a few of them and that is why she had the ECT treatments (against my will). Like I said before any information, questions, anything at all is greatly appreciated!

Angel77 · 05-05-2004, 12:36 AM

Stanford University also has some great information on narcolepsy and cataplexy. There are also many support groups that will give you an idea of what it's like in real life, not just in text-books.

These spells can happen after something traumatic like your mom went through. Also, people with any type of mental illness and narcolepsy can be diagnosed with a horrible personality disorder. One of the ladies I know was diagnosed as schizophrenic and she actually had bi-polar and narcolepsy! It was two years until a counselor saw one of her spells and told her what it was! She was lucky to find him!

Now, have you been able to check out the sleep disorders board?

I'll look on another one I'm on and copy down the symptoms that I have experienced. It's hard for me to remember them all, but I know they would be helpful to you. Please check it all out and let me know. I'll grab the list and post them. Good luck to you both and keep working on it.

Also, list the meds she's on and maybe some of the people here can tell you if there's a chance they're interacting or if they've had any health problems that were aggrivated by the meds she's on. Also, there's a pharmacy sight that allows you to cross-reference all the drugs for interactions.

I'll pop back in soon. Toodles for now, hon. Angel