Extreme Weakness/passing Out Spells

[Guest momof3]

Has anyone experianced a overwhelming urge to close your eyes? Theres just nothing you can do to keep them open. Your body has muscle loss? Slowly you can't respond vocal, but mostly your hearing is ok. Sometimes it sound like just noise. For me this could last 10 minutes or an hour. When I come around, I am so fatigue all I can do is just sleep. I have been hospitalized in March 2004 and

Sept 2004. Most ER doctors don't take this seriously. I went by Ambulance both times. The first trip, I knew nothing about celiac disease, the docs gave me a muscle relaxer and sent me on my way. He said I could control the seizure(non-epi) spells. These spells resembled tremors and movement such as epi. I could not control them. These type of spells slowed down in June. I was diagniosed with celiac disease July 15 2004. I have on a gluten-free/wf diet since then. The other spell that sent me to the hospital was due to my co-workers. Of course they were scared even though I told them if they see that I am in a deep like sleep, call my family and they can take me home. instead they called 911. I was admitted, and test were ran. I have had numerous CT, MRI,EEG,EKG, and blood work ran. Every test came out OK. Oh, I am anemic. I found out most of the medical field is clueless to celiac disease.

I had a pretty bad spell today while at the doctors office recieving the results of my IV iron replacment therapy. I felt myself going out. My sister had to get the nurses to assist her. I walked in the office, but left in a wheelchair. The doctor had me get a wheelchair for my home. This is scary for my kids to see me this way.

Sorry to go on and on. I want to function the way I used to.

momof3

[YankeeDB]

It sounds like something in addition to celiac disease. A few ideas occurred to me as I read your post. I'm not a medical person so don't let me scare you; these may be farfetched!

1. Apnea (Do you snore? Wake up struggling? Wake up with cover askew? Apnea causes extreme fatigue to the point of narcolepsy).

2. Narcolepsy

3. Mysthenia Gravis

4. Multiple Sclerosis

The latter two are auto-immune disorders and I tend to believe that celiac disease, also an autoimmunity, can accompany other such diseases. I'd see a neurologist if I were you.

Good luck! Don't give up.

[Guest momof3]

THANKS YANKEEDB FOR RESPONDING,

I NEED TO LOOK UP A COUPLE OF THINGS YOU MENTIONED. NARCOLEPSY & MYSTHENIA GRAVIS. IS THE FIRST ONE CRONIC FATIUGE? IF SO, I HAVE WONDERED ABOUT IT.

MOMOF3

[Guest gillian502]

You may also want to look into a disorder called "POTS", which stands for postural orthostatic tachycardia syndrome. It goes along with a condition called NMH, neurally mediated hypotension. These conditions are related to your autonomic nervous system, meaning blood pressure and heart rate. It sounds as if you are having a drop in blood pressure and perhaps some tachycardia at times, which may be causing the fainting-style spells. A cardiologist would be the person to ask about this possibility.

[Guest momof3]

Thank you for the info. I am going to UCLA medical center monday. I will be sure to ask about this, as well as the other post.

Thanks a bunch!

momof3

[Guest momof3]

I'm so glad I made the trip to UCLA. This doctor is running test that I have not had before. He said my symptoms are not due only to Celiac. There could be a couple of factors. One being a type of bacteria going on. Labs results will be back monday. The fatigue and weakness today kept me down most of the day. I also ask to tested for MS. My grandfather had this.I hope I get some where with this doctor. I was suprized how many doctors or hospitals I have been to since 3/04.

13 doctors, 3 hospitals. HEW!!

momof3

[anglepoise]

Wow, Momof3, I've had a very similar experience. I've had episodes that are like seizures where I go in & out of consciousness & have been hospitalized for them. But the doctors never could figure it out. This happened to me a couple of years back. Lately, I just get these extreme dizzy spells & feel like I can't breathe. One doctor thinks it's panic attacks. I think it may be hypoglycemia. Regardless, I've been left to my own devices to figure it out....

Good luck,

angel

[mommida]

Could you let me know what this is because I've had this happen on occasion too. People say my eyes are open during this time. I don't know if I move or not.

One thing I heard that may just be an urban legend is that artificial sweetners can cause these types of problems. I haven't had spells since I avoid artificial sweetners like the plague since I heard that.

Laura

[Guest missyflanders]

Mom of 3 --- Do you have any results yet? I have been thinking of you. Hoping for good news.

Missy

[Guest momof3]

Thanks for your concern.

I am still waiting to here back from UCLA. I was supposed to hear from them yesterday, but they were out of the office. I have wanting to check the boards several times, but I get wore out by the slightess things. Sitting here as I post I feel like going back to bed.

Have any of you gained weight? I swear I must have put on 20lbs this month.

Has your vision changed as well? I thank you for posting. I felt as If I was all alone with this.

momof3

[Guest momof3]

Well UCLA Medical finally called with my results. My labs all came back normal.

You know, I'm glad there normal, but the truth is I wanted an end of searching for a diagnoises.

Today has been a pretty hard on me. I guess I got my hopes up on returning to work before 11-22. I work with H.S.Special Ed students and enjoy it very much. Since I have been off work since 3-04, my position has to be filled after the 5th month. This SUX!!

I hold our family medical insurance. Thanks for letting me VENT this off!!!

momof3

[dbuhl79]

Mom03,

Has anyone mentioned POTS to you. I noticed it in a previous post here. My sister in law has this condition. I'd see about getting a referal to Mayo's. Good luck, I hope you find an answer soon!

Dana

[dbuhl79]

You may also want to look into a disorder called "POTS", which stands for postural orthostatic tachycardia syndrome. It goes along with a condition called NMH, neurally mediated hypotension. These conditions are related to your autonomic nervous system, meaning blood pressure and heart rate. It sounds as if you are having a drop in blood pressure and perhaps some tachycardia at times, which may be causing the fainting-style spells. A cardiologist would be the person to ask about this possibility.

Gillian,

I see you've mentioned POTS, do you know if it also has an onset of severe migraines related to it? Always looking for more info for my sister-in-law who suffers from POTS and severe migraines now also. Thanks!

[FreyaUSA]

What you have sounds very familiar to me, something my father went through. Just a couple questions, symptoms he had that you didn't mention: do you have any numbness or tingling in your lower legs? Hands? Is it getting more and more difficult to swallow? Talk? (You might have mentioned these...) Do you feel stiff all over? Are your fine motor skills deteriorating?

I'm only asking because in a five year period he went to at least 20 different doctors, seven major medical/research hospitals and the Mayo Clinic before finding anything out.

Also, how have the symptoms and episodes been since going gluten-free? (And how long have you been completely gluten-free?)

[stef-the-kicking-cuty]

When my husband and i weren't married yet, he had a girlfriend (he told me about her). And she passed out regularly, too. At the end it came out she had diabetes and passed out because of that.

[Guest momof3]

I'm still in search of a diagnoises. Re: POTS, I have forgotten to mention this to my doctor. Thou during my spells my blood pressure has been taken. I will make a point to bring this up at my appointment 12/14. I'm having the scope ran again. He wants to take a closer look.

Debbie

[dbuhl79]

Debbie,

I really hope you find an answer soon. I am sure this is very diffcult to function with. Regarding the POTS. One thing to keep in mind, during these spells or other times, do you ever feel you suffer or feel you have a rapid heartbeat? My understanding of this condition is just as it implies by its name, the speeding up of heartbeat. Good luck and please keep us posted!

[Guest momof3]

I can not pin point it to rapid heart beat. The spell can happen during the most relaxed time or when i'm involved in mild activity. I've yet to find the trigger. During a spell while in the hospital, my BP and heart rate were monitered by a tele.

Tomorrow I have an appointment with my neuro doctor in Santa Barbara. This is for a follow-up. Hoping for some answers.

Debbie

Thanks for your concern!!!

[num1habsfan]

i've never had anything that bad, but I know a good number of times I have nearly passed out..even if I just bent down and stood up quickly. I usually actually trip over something, or I have to grab onto something because I nearly black out. I know last summer I actually DID pass out a few times. I get up to go to work, and next thing I know, I'm still in bed..Scares me..

~lisa~

[red345]

--

[Guest momof3]

Thanks Lisa & red345,

My Gastro doc will be doing the upper scope again 12/14. He wants to look around a bit more he says. He did say he thinks it is not due to celiac disease. This past Thursday at my neuro doctors appointment, I was told I"m having non epi seizures. My ct, mri, chest x-ray, labs are all normal. He asked me again about stress & anxiety.

I guess I need to come to grips this could be the source. I don't know why stress is showing it's ugly face this way with me. I know other people that seem more stressed than me, and still able to have a normal life.

OOPS is called whinning? lol!!! I just want to be able to go back to work, Drive, & plan things with my family.

Thanks group!

Debbie

[darlindeb25]

awwww debbie---i know this may make it sound to simple, but can these problems be panic attacks and believe me, there is nothing simple about panic--it rears it's ugly head at any time and sometimes it feels like a heart attack, you feel like you cant breathe, like you have to run to get away from everything and everyone--sometimes you feel like everyone is watching you--your heart pounds so fast that you can hear it in your ears and yes--stress is a big factor and we cant just shut off stress----we all handle stress differently--doesnt mean your stress is any worse then the next person or that they arent stressed even more--the symptoms of stress vary just as much as those of celiacs--have you ever tried xanax, paxil, zoloft--any of the drugs that help with anxiety----i have been off my paxil for almost 3 yrs now and i still have days where i could use it----i call them panic days--days where i wake up and just feel different, i feel jumpy may be the best word for it--on these days it is very difficult for me to stay on task--it's like my mind works overtime---i hope some of this makes sense to you--keep us posted---deb