Robin@Home
10-01-2005, 03:06 PM
I am scheduled for my 1st Neuropsych Exam in two weeks. I have already had an MRI (5/04), EEG (5/04), MRI & MRA (6/05), 24 EEG (6/04), 48 EEG (9/05), and a full cardiac work up.
I'm at the end of my rope. Somedays I just do not want to get out of bed - I'm so tired of feeling bad.
5 years ago I started having these small (5-15 sec.) episodes where I wouls lose my vision would fade completely and then it would fade back in.
2 years ago these episodes started increasing in freq. 6 months ago I started having other problems with these episodes. Each episode causes me to stand perfectly still in order not to fall, I lose my vision and hearing completely for about 15-20 seconds on avg., then everything fades back in. Along with having these from a few a day, to one every other day, I am now having dizziness, nausea (which then becomes vomiting), blurred vision, lights in vision, visual distortions (dorways/furniture aren't where they appear - per the marks all over my body), numbness of right arm and sometimes leg, balance problems (tripping up the stairs), speech problems, and the BIG ONE, cognitive problems. Lately I have a sharp pain in the back of my head, then in an hour or two my right arm aches and then becomes numb (and turns a little red). The next day will be bad cognitively and my balance and vision get distorted. Somtimes this lasts days, sometimes I'm fine ina few hours. In the past two months, I've had 2 good days.
Within the last 1 year I have been diagnosed with REM Disorder, RLS, and Narcolepsy. Somedays I can't get out of bed. Whatever "this" is could be causing the narcolepsy - so I may not really have that, it could be a side effect. The REM disorder is real - ask my "other half" - I broke his nose in my sleep!
They are treating me for Migrain with Aura - many of the Meds make me very ill. My verteran Neurologist (an ambassodor of the US Board of Neurology) gave up on me and sent me to Jefferson U to. I'm so special I get to see a three year resident.
Why I am worried - The resident gave me a small picture test (which I did notice said cognitive "stroke" test. Next thing I knew I was talking to a staff neurologist that told the resident this was beyonds his training and to schedule a neuropsych exam.
I think they are looking at TIA or strokes or something similar as related to migraine aura - but isn't TIA or a stroke an emergency situation? Why would they make me wait two weeks for the Neuropsych test?
I am so tired. I am tired of medications, trying to keep my full time job, trying to take care of a house . . . . I guess I am having emotional trouble with this.
I feel like the only people I have on my side is my God, and my Sleep Specialist - who just so happens to be the coroner (isn't that interesting).
I just don't know what to do anymore.
I'm at the end of my rope. Somedays I just do not want to get out of bed - I'm so tired of feeling bad.
5 years ago I started having these small (5-15 sec.) episodes where I wouls lose my vision would fade completely and then it would fade back in.
2 years ago these episodes started increasing in freq. 6 months ago I started having other problems with these episodes. Each episode causes me to stand perfectly still in order not to fall, I lose my vision and hearing completely for about 15-20 seconds on avg., then everything fades back in. Along with having these from a few a day, to one every other day, I am now having dizziness, nausea (which then becomes vomiting), blurred vision, lights in vision, visual distortions (dorways/furniture aren't where they appear - per the marks all over my body), numbness of right arm and sometimes leg, balance problems (tripping up the stairs), speech problems, and the BIG ONE, cognitive problems. Lately I have a sharp pain in the back of my head, then in an hour or two my right arm aches and then becomes numb (and turns a little red). The next day will be bad cognitively and my balance and vision get distorted. Somtimes this lasts days, sometimes I'm fine ina few hours. In the past two months, I've had 2 good days.
Within the last 1 year I have been diagnosed with REM Disorder, RLS, and Narcolepsy. Somedays I can't get out of bed. Whatever "this" is could be causing the narcolepsy - so I may not really have that, it could be a side effect. The REM disorder is real - ask my "other half" - I broke his nose in my sleep!
They are treating me for Migrain with Aura - many of the Meds make me very ill. My verteran Neurologist (an ambassodor of the US Board of Neurology) gave up on me and sent me to Jefferson U to. I'm so special I get to see a three year resident.
Why I am worried - The resident gave me a small picture test (which I did notice said cognitive "stroke" test. Next thing I knew I was talking to a staff neurologist that told the resident this was beyonds his training and to schedule a neuropsych exam.
I think they are looking at TIA or strokes or something similar as related to migraine aura - but isn't TIA or a stroke an emergency situation? Why would they make me wait two weeks for the Neuropsych test?
I am so tired. I am tired of medications, trying to keep my full time job, trying to take care of a house . . . . I guess I am having emotional trouble with this.
I feel like the only people I have on my side is my God, and my Sleep Specialist - who just so happens to be the coroner (isn't that interesting).
I just don't know what to do anymore.
Sponsor
DX-
10-02-2005, 04:05 PM
Robin, bless your heart!
You have truly been through the ringer on this one.
We can't provide answers here, but we can steer you in some directions for more help.
First -- consider sharing your post on one of the boards that might be the direction your newest doctors are looking at: Brain and Nervous System? or even take a stab at epilepsy or any board that is neuro in nature. Not that they are the answers for you; rather, the people who suffer with those maladies can let you know if they have shared symptoms with you.
If your doctor hasn't asked you to keep a journal, then begin doing that. Every pill you take, every feeling you get -- track everything. See if you can discern any patterns that will help them try another test or diagnose you. Take the journal to your next appointment.
Online research: use some of the keywords you've used here: headaches, migraine, blurred vision, cognitive problems. Anytime there is a phrase of more than one word, use "quotation marks" around it because the search engine will keep those words together in its search.
You can begin with any of the beginner websites listed in the sticky at the top of this post. Yours is such a tough one, that they might not be too useful. I suggest you try out some of the more physician-oriented sites (doctorsdoctor.com, medline.com, harvard med school, etc.) Even use google or yahoo, even though you'll probably have to slog through hundreds of articles that don't relate at all. If you come up on a journal article that looks hopeful, but you can't get ahold of because you'd have to pay for it, ask your physician if s/he has a subscription to that journal. If not, check with your local library system to see if they can help you.
Best of luck. Hope you'll find something helpful here. Keep us posted.
You have truly been through the ringer on this one.
We can't provide answers here, but we can steer you in some directions for more help.
First -- consider sharing your post on one of the boards that might be the direction your newest doctors are looking at: Brain and Nervous System? or even take a stab at epilepsy or any board that is neuro in nature. Not that they are the answers for you; rather, the people who suffer with those maladies can let you know if they have shared symptoms with you.
If your doctor hasn't asked you to keep a journal, then begin doing that. Every pill you take, every feeling you get -- track everything. See if you can discern any patterns that will help them try another test or diagnose you. Take the journal to your next appointment.
Online research: use some of the keywords you've used here: headaches, migraine, blurred vision, cognitive problems. Anytime there is a phrase of more than one word, use "quotation marks" around it because the search engine will keep those words together in its search.
You can begin with any of the beginner websites listed in the sticky at the top of this post. Yours is such a tough one, that they might not be too useful. I suggest you try out some of the more physician-oriented sites (doctorsdoctor.com, medline.com, harvard med school, etc.) Even use google or yahoo, even though you'll probably have to slog through hundreds of articles that don't relate at all. If you come up on a journal article that looks hopeful, but you can't get ahold of because you'd have to pay for it, ask your physician if s/he has a subscription to that journal. If not, check with your local library system to see if they can help you.
Best of luck. Hope you'll find something helpful here. Keep us posted.
Lostdog
10-03-2005, 02:39 PM
Migraine with aura is a generic term for several types of migraine conditions.Some of which are rare.Do a search for a condition known as "Basilar artery migraine".See if the symptoms match up to what you are experiencing.Good Luck to you! I have been where you are-9 yrs of it -after 5 years I was dx: Basilar artery migraine(BAM) but it did not fill the whole puzzle-now I am having a dx:Lupus strongly looked at & finally think I may have found some complete answers.I wish you all the best.
tiramisu08
10-03-2005, 11:53 PM
hey there i suggest if you`re out of things to do now, set things straight. Go get a full body scan. It will show what ever you got inside of you that it so confusing. It will target from the top of your head to your toes. After what you diagnosed get things focused and make sure you get the right treatment. Just do it.
Robin@Home
10-04-2005, 06:16 PM
Tirasumi -
A doc has to write a script for that don't they? The docs at Jefferson dont seem to give a thought to anything I suggest. Maybe my slep doc can write one - I'll ask him tomorrow I see him at 9 am. He is ready to pull me out of work. I know I'll have a hard time getting disability, even though I pay for it out of my salary every month as part of our benefits.
I have a lot of praying to do for God to provide. It will be hard financially with little or no income at all.
Lostdog -
I've been looking at Lupus also. Iknow someone that has it - so I know how close to home it fits.
I will look up the Basilar artery migraine right now.
Thanks all.
A doc has to write a script for that don't they? The docs at Jefferson dont seem to give a thought to anything I suggest. Maybe my slep doc can write one - I'll ask him tomorrow I see him at 9 am. He is ready to pull me out of work. I know I'll have a hard time getting disability, even though I pay for it out of my salary every month as part of our benefits.
I have a lot of praying to do for God to provide. It will be hard financially with little or no income at all.
Lostdog -
I've been looking at Lupus also. Iknow someone that has it - so I know how close to home it fits.
I will look up the Basilar artery migraine right now.
Thanks all.
akjoha
10-10-2005, 09:38 PM
Robin! I really feel your pain! I suffered with the severe migraine headaches all through my years of school.Teachers and caretakers never knew what was wrong with me.I always knew when they were starting would get the aura of what I called double vision, sick at my stomach;terrible pain in my head, numbness in my fingers tongue would get numb could not form words of what I wanted to say.It would then go away and I would see real clear after word(I wore glasses)Thru the years they didnt happen as often, and today I get them very little and not as severe.Certain meds such as norvasc will bring on the aura so cant take it.It is very scary and yours sounds even worse than what I went thru. I had polio as a child and often wondered if that had something to do with it but never knew.Hopefully you have found something out ?!Good luck;akjoha
Quietcook
11-07-2005, 11:29 AM
Robin,
Bless you. Understand fully where you stand and how totally frustrating it can be. I too went through 13 months of in/out of hospitals with uncontrolled symptoms until it caused me to have a heart attack at 41. What I finally did when my doctors were totally bumfuzzled is that I took myself to Mayo Clinic where they did a full workup.
I was terrified to be so far from home back then, but now they have centers around the US. However, it was less expensive than being in the hospital here in TN, plus I found that my body had several failings which really created a confusing picture.
My migraines dramatically increased and it was finally found that I had some spinal leaks, so blood patches got me over that for a while, then more constant, severe ones. Luckily, I was referred to one of the few true Migraine specialists right here near home, and he had trained at the one and only certified hospital which specializes in Migraines. Also, he was a migraine sufferer, so that brought a lot of understanding.
However, the fading episodes were related to my heart. I could feel the heart when it raced and had complained of it for a couple of years, but I didn't feel it when it slowed; just felt normal. Well, it wasn't as it slowed too much, being more of a brain mis-calculation of seratonin. When my heart raced, it miscalulated the amount needed, so it would drop too slow causing the fading, and eventually it got to passing out briefly. The cardiologist did what was called a PET test, and now for the last 11 years, there have been no problems. A simple medicine called Norpace keeps things going just fine and I've had only one adjustment to the dose in all these years. You might wish to ask your cardiologist about the possibility of being tested for Neurally Mediated Syncope if this appointment does not produce a correct diagnosis.
Although all that you have gone through and the medications can exhaust you, if you have extreme exhaustion, please ask you doc to check your thyroid. As many blood tests as doctors and hospitals take, they don't check the thyroid routinely, and if it is underactive, it can cause major heart problems, exhaustion, breathing, thinking, etc. Luckily mine got caught immediately, but only because both my Mother and Uncle nearly died before their doctors finally checked after I raised a ruckus. They had each gone to the doctors for more than 6 months and the symptoms kept increasing and multiplying. Once diagnosed, because they were so far off the scale, it took several more months before the medicines were sufficent that they could feel better. So, please make sure your doctors have indeed at least checked your thyroid - it can affect so many of our orgains and it just never seems to get checked until everything else has been ruled out.
Sure hope you get answers soon.
Bless you. Understand fully where you stand and how totally frustrating it can be. I too went through 13 months of in/out of hospitals with uncontrolled symptoms until it caused me to have a heart attack at 41. What I finally did when my doctors were totally bumfuzzled is that I took myself to Mayo Clinic where they did a full workup.
I was terrified to be so far from home back then, but now they have centers around the US. However, it was less expensive than being in the hospital here in TN, plus I found that my body had several failings which really created a confusing picture.
My migraines dramatically increased and it was finally found that I had some spinal leaks, so blood patches got me over that for a while, then more constant, severe ones. Luckily, I was referred to one of the few true Migraine specialists right here near home, and he had trained at the one and only certified hospital which specializes in Migraines. Also, he was a migraine sufferer, so that brought a lot of understanding.
However, the fading episodes were related to my heart. I could feel the heart when it raced and had complained of it for a couple of years, but I didn't feel it when it slowed; just felt normal. Well, it wasn't as it slowed too much, being more of a brain mis-calculation of seratonin. When my heart raced, it miscalulated the amount needed, so it would drop too slow causing the fading, and eventually it got to passing out briefly. The cardiologist did what was called a PET test, and now for the last 11 years, there have been no problems. A simple medicine called Norpace keeps things going just fine and I've had only one adjustment to the dose in all these years. You might wish to ask your cardiologist about the possibility of being tested for Neurally Mediated Syncope if this appointment does not produce a correct diagnosis.
Although all that you have gone through and the medications can exhaust you, if you have extreme exhaustion, please ask you doc to check your thyroid. As many blood tests as doctors and hospitals take, they don't check the thyroid routinely, and if it is underactive, it can cause major heart problems, exhaustion, breathing, thinking, etc. Luckily mine got caught immediately, but only because both my Mother and Uncle nearly died before their doctors finally checked after I raised a ruckus. They had each gone to the doctors for more than 6 months and the symptoms kept increasing and multiplying. Once diagnosed, because they were so far off the scale, it took several more months before the medicines were sufficent that they could feel better. So, please make sure your doctors have indeed at least checked your thyroid - it can affect so many of our orgains and it just never seems to get checked until everything else has been ruled out.
Sure hope you get answers soon.
MandyPandy
11-07-2005, 01:34 PM
Sounds like you really have been through a tough time. I know it is so fustrating to know that something is just not right but you can't get a doc to tell you what is wrong. I have suffered for years with Migranes and fibromyalgia. The migranes I have do give me similar results to what you are having. A few years ago i went to a migrane specialist that was also a balance disorder specialist. Have you been through any hearing, balance and sight tests? It almost sounds liek you could have some sort of inner ear disorder. My doctor even tested to the point where he watched the way that I walk to see if it was in balance. For me it was just migranes but i never had the severe diziness that you ahve described. The tests sound good that you have had but I'm jsut not sure what kind of tests they do for Minears disease and such.
best wishes,
Amanda
best wishes,
Amanda