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Nerve firings affecting my sleep


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Old 10-07-2006, 03:48 PM   #1
HopefulTiredMom
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Nerve firings affecting my sleep

My name is Ann, and I am 40 years old. I have been getting sicker and weaker for 13 years, and my two children have suffered tremendously as a result. My husband, a rocket scientist working at NASA’s Marshall Space Flight Center, has had to be father, mother, cook, housekeeper, chauffeur, and soccer game cheering squad. I have missed most of the large and small events in my children’s lives because of my condition. More importantly, our two children have agonized and worried for most of their lives as they watched their mother deteriorate.

My sleep has deteriorated to the point that I can barely make it through the day. I have not been able to work since this began, and I have weakened to the point that simply making a meal is an accomplishment. I don’t have the energy to pursue treatment from doctor to doctor – it is just too exhausting for me. One appointment in a two week period is more than I can handle.

I feel like the entire medical system is set up to exclude patients who are as sick as I am. A fruitless visit to yet another doctor that cannot identify a cause for my sleep problems is exhausting and frustrating, and leaves me worse off than I was before the visit because I’m more exhausted from the visit. If the doctor orders tests or writes a prescription, the damage is compounded, because I have never had a helpful prescription or a useful test result. It’s just more wasted energy, a precious and rare commodity in my life.

We had been living in Maryland for the past seven years, but the symptoms were aggravated by the cold winters up there. We uprooted the kids from high school and middle school and my husband found a new job here in Huntsville so that we could get me to a warmer climate. We hated to take David and Jessica from their friends, but we were desperate. The kids have been really supportive and understanding, but it hurts to know what they have given up because of my condition.
Symptoms and Diagnoses
It started as a general feeling of fatigue around the time I was pregnant with our second child, Jessica. It seemed like I was not getting restful sleep. Over the years the symptoms have gotten more noticeable, so I can now say that I suffer from intermittent nerve firings. These nerve firings wake me up as I’m falling asleep, and even wake me during sleep. I went through a sleep study at the University of Maryland in 2003; they diagnosed severe fractured sleep, but identified no treatment other than sleeping pills. I have taken sleeping pills, and they are not an acceptable long-term solution because they do not provide restorative sleep. I cannot take most medications because they disturb my sleep even more than it is normally disturbed. I cannot consume alcohol or caffeine because they both disrupt my sleep.

Because the nerve firings have become more pronounced, I recently went to a neurologist, who ordered both an MRI and a myelogram. The MRI showed the brain was normal, but identified a cervical spinal stenosis (both arthritis and a compressed disc in my lower neck). The myelogram confirmed the problems in the lower neck. However, there is no physical pain associated with this neck problem.

This is nothing more than a brief summary of the hell we have been through, but I know a recitation of woes can get tedious. What we really need is some help. Where do we go from here? Does anyone else have these symptoms? What treatment options are out there? Is there hope?
Thank you for your time.

Diagnostic details

I have undergone testing or treatment for the following conditions.

• Hypothyroidism – negative
• Anemia – treat with iron supplements, now in normal range
• CBC – all in normal range (except iron as noted above)
• MS – brain MRI OK
• Sleep apnea, Restless legs syndrome, and other sleep clinic parameters – diagnosed with fractured sleep, no specific cause identified,
• Systemic fungal infection – treated with Nistatin and Diflucan, no benefit or improvement from treatment
• Epstein Barr virus – low positive
• Lyme disease – negative
• Cardiac stress test – normal
• ELISA/ACT Lymphocyte Response Assay – strong reaction to pyrene, sodium propionate, red food coloring, MSG, peppermint, Japanese cucumber

 
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Old 10-07-2006, 03:55 PM   #2
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Re: Nerve firings affecting my sleep

Hi Ann,

Nice to meet you. I'm so sorry for all of your problems. (I spend alot of time on this board on the weekends and just saw your post and am very interested because I am having nervous system 'firings' myself). But what do you define as firings? Twitches, electric shocks, myoclonus (jerks), etc? And do your docs attribute this to your stenosis or cord compression? How do they wake you up? Can you be more specific about your symptoms? And have you been to a neurosurgeon or pain management (even if you are not in pain, the pain management may want to treat the discs with epidural steroid injections, etc.

Thanks,

Cheryl
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C 3/4, 5/6, 7
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Some Cord Compression

 
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Old 10-07-2006, 04:09 PM   #3
HopefulTiredMom
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Re: Nerve firings affecting my sleep

Thank you Cheryl -- this is the first time I have posted anything.
I have no pain from this, maybe just mild discomfort in my shoulders. The nerve firings can range from gentle fasciculation, to jolts that feel like the tips of my fingers were hit by a book, to limb jerking. They do wake me up, and I think they prevent me from staying in deep restorative sleep. The neurologist dismissed the stenosis as a cause of the firings (as she was rushing out of the exam room). I will see a neurosurgeon on Tuesday.
Ann

 
Old 10-07-2006, 04:25 PM   #4
puparoo
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Re: Nerve firings affecting my sleep

Ann -

Well, it looks like you found a couple folks here who have the same problem as you! Me along with a few others, maybe a lot of others, I think more folks actually lurk than post, have these kinds of problems.

I have this issue. The same thing as you. NOTE this does not keep me awake at night. I find that sleep is the only thing that keeps me sane. I am able to sleep, but have fasiculations, twitching, jerks in my arms, hands, and sometimes in my legs and other areas. This has been going on since early July. I have 3 herniated discs in my neck, stenosis and some compression. This was all diagnosed in April. Although I know it had been going on for years, because I'd had the symptoms, but finally found someone who listened to me when I said, "I THINK THIS IS COMING FROM MY NECK". Sure enough the cervical MRI showed a big fat mess. I am 30. Unfortunately, I do not have any children yet and that is adding to my stress. My neurologists and now my NEUROSURGEON tells me that these symptoms cannot be related to my neck. I firmly believe that they are wrong. From my research and even from this board, I see that almost all of us have some of this to a degree.

Unfortunately yours is affecting your sleep. Ann, I can tell that you are exhasted and exasperated. I cannot imagine having to deal with this type of thing for 13 years. But try to find a doctor to help you. This absolutely can be coming from your neck, In my humble opinion. If your neuros rush you and ignore you, find another. Don't let this ruin your life any longer. I am at that point right now where it is seriously affecting my life and I am hating it. I am looking for a doctor who will listen to me and try to treat me based on what is going on in my spine and not tell me "I'm crazy". Because that is how I've been treated lately.

I know you said that you've tried meds, but have you tried Lyrica, Neurontin, Topomax? They calm the nerves a little. Don't get me wrong, they won't stop the twitching, etc. I don't care what any doctor says, they do not work that way for me. How about muscle relaxers before bed? Nyquil??? I know it sounds crazy, but I take a little bit of nyquil to get me through the night.. and it works most of the time.

I don't think sleeping pills are going to do squat for your problems. Have you had an EMG to see if there is any nerve damage?

I'm in the same boat. My docs overprescribe and generally don't listen. So I am looking for someone to help me!!!! I'm glad you're going to the neurosurgeon. Maybe you'll get some answers. Please keep me (and the board) posted.

Cheryl
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Hernations with Stenosis
C 3/4, 5/6, 7
T1
Some Cord Compression

 
Old 10-07-2006, 04:48 PM   #5
HopefulTiredMom
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Re: Nerve firings affecting my sleep

Thanks -- I'll post the neurosurgeon's evaluation this week. I appreciate the support.

I have not tried those meds, but most meds make my sleep worse (if that's possible). I have not had an EMG.

Good luck finding a doctor who will listen with an open mind. I hope I've found one.

 
Old 10-10-2006, 03:46 PM   #6
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Re: Nerve firings affecting my sleep

mmmmmmmmmm ....interesting......well I might be another victim.....I had a neck injury 20 years ago and am living a hell that only you people might understand. I was diagnosed after my neck injury 8 years later with myoclonic jerks..I was put on Rivotril.......it gave me a half normal life....the doctor says it has nothing to do with the accident!!!!???on top of the jerks I have upper stomach pulsating and tightness...it very tender...like a spasm...It is a terrible feeling. Unfortunately it has come back so that means up the Rivotril which I don't want to do.....

So your not the only ones.......

Oceanmist

 
Old 10-11-2006, 07:30 AM   #7
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Re: Nerve firings affecting my sleep

TiredMom --

Just because you have no pain doesn't mean the cervical spinal stenosis isn't serious. I was ignoring other neuro symptoms because I wasn't in pain and was told if I let it go much longer I might have been paralyzed. Don't mean to scare you, but I was plenty scared when I learned this. Let us know what the NS says!!!

-Gloria

 
Old 10-11-2006, 08:52 PM   #8
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Re: Nerve firings affecting my sleep

Thanks for the support. The neurosurgeon said that I didn't have pain or loss of coordination, and therefore my symptoms were not severe enough for surgery. Jackass.

I have been seeing a physiatrist (physical therapist-type MD) who says he can help. He gave me Lyrica, which seems to help, but it's still early. I took my first dose this morning. He will try a facet block (steroid injection) on Friday to reduce spinal cord swelling.

I've come to believe that the disc problem and arthritis, which are both located in a single joint (C5-C6), are both the result of a car wreck I was in as a young girl. No seat belt, tossed around the car during the collision, you get the picture.

I am learning that some doctors don't know anything but will act like they know everything, and some doctors are wonderful and will listen with an open mind. The trick is to tell the difference. A bigger trick is to find the good ones.

Good luck oceanmist, and thanks Gloria.
Ann

 
Old 10-12-2006, 07:32 AM   #9
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Re: Nerve firings affecting my sleep

I'm seeing a physiatrist also. She really is a good mix of neurologist/physical therapist. She started me on baclofen for my gait issues. Seems to help, only been a little over two weeks so its a little early to tell. Problem is she's so booked - she wanted to see me again in 6 weeks and the first opening was 10 weeks out. (they put me on a cancelation call list)

 
Old 10-15-2006, 07:09 PM   #10
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Re: Nerve firings affecting my sleep

After a few days, I can say that Lyrica helps reduce the severity of the nerve firings, which helps me sleep. The facet block is not working yet, but the doctor said it could take a week for the steriod to reduce the swelling. I'm still hopeful.

 
Old 10-16-2006, 08:11 AM   #11
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Re: Nerve firings affecting my sleep

all of these types of symptoms can be attributed to neck problems,trust me.it all depends on just what is actually being affected.this sounds more like what i am getting in my legs tho,and mine is due to motor nerve damage,which can happen up in the neck just as easily.the types of symptoms you all are having are stemming from something,and since you all appear to have c spine affectation,well that would tend to back up this theory,wouldn't ya think? some docs are so completely inadequate as diagnosticians,really.i have seen three seperate neurosurgeons with one telling me that this hidious prying pressure type pain that seemed to just be gnawing away at underneath my shoulder blade for well over a year,was in no way due to my cavernoma because it sat right at the c 8 nerve level,which he stated was just too high.well after i finally went to the university of MN and consulted with the head of neurosurgery(now this guy actually knew about cavernomas and also had well over thirty years of experience)and what do you think was one of the very first things he told me?the pain was most likely due to my cav and even drew me flippin pictures as how those nerves actually ran below the level of affectation.geez,all it took was someone who actually knew what the hell they were doing,go figure.

I would keep pushing things with your docs,really.if they wont or don't help you,move onto another.not all are created equal,not even close.

i certainly hope you hear something positive from this new neurosurgeon.for anything having to do with the c spine,i would take an NS,a knowledgable one tho,lol.over any other type of doc.they just(on most occasions) seem to really understand the innerworkings of how the nevres all function on a much deeper level.i was soo lucky to find my NS when i did tho.unfortunetly he just retired in august of this yar and i am sooo bummed out trying to find a new one.god life sucks sometimes.good luck HTM,hopefully you will be seeing one of th more knowledgable and experienced ones.please let us all know what you find out.Marcia
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9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 10-18-2006, 08:29 PM   #12
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Re: Nerve firings affecting my sleep

Thanks Marcia
My husband and I were discussing the NS today and I realized that I don't think he even looked at the MRI and myelogram. He had the nurse take an X-ray of the neck right before he came in. Why take an X-ray when you have and MRI and myelogram (both no more than a few weeks old)? I think he was too lazy to slog through the many images in the MRI and myelogram, both of which took time and energy that I don't have to spare.

I'm going to see an orthopedic surgeon next week. I thought NS was the way to go until I met my first one. I'm glad you found a good one. Maybe we'll get better news with an ortho.

 
Old 10-20-2006, 09:07 AM   #13
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Re: Nerve firings affecting my sleep

HTM...I agree with Marcia. I am currently a neurological nightmare and have a crappy c-spine...very large rupture 13 months ago. My nervous system feels like it is on high constantly...like every nerve in my body is "plugged in" it's a horrible feeling, not to mention...tingling, numbness, dizziness, twitching, pain, gait issues, hyperreflexia, it switches up constantly. I literally never know day to day/hour to hour what's in store. I too, am trying to get someone to help me figure this out and it's not been easy. My NS seems to think, though he medically "can't explain everything," that it probably stems from my neck...the only problem is he says the disc is reabsorbing and, at this point is non-operable. He has me doing accupuncture, myofacial, osteopathic stuff...but none of it is working so far. I am now going to see another surgeon next month to get someone else to look at my MRI's. I just want someone to help me get to the bottom of this instead of sending me on my way - I'm a wreck. I've got 3 kids and my ability to function is often really impaired. I've had extensive bloodwork, spinal tap, EMG/NVC...you name it- all "normal." I'm sorry you're going through this, please keep us posted. I am hopeful when I see the next guy I'm feeling really bad, that way I'll be very mad and forceful about all this. If I'm not at my worst then I end up being more polite or just weepy, ugh! Good luck. Let us know how it's going. Mona

Last edited by monarog; 10-20-2006 at 09:10 AM.

 
Old 10-21-2006, 08:54 PM   #14
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Re: Nerve firings affecting my sleep

Do they feel like an electrical shock running thru your body, kind of like you have been electricuted? I have those also and my painmanagment doctor calls it nerve pain and prescribed lyrica for it, which helped a lot in the beginning but I have noticed lately that the "shocks" have come back. I had no idea what was going on, I tried to explain to friends and family but they all just kinda look at me funny like they have no idea what I am talking about . I am not seeing a ns right now just the pm, I have a bulging disc in my neck, deteration in my lower back and sciatica. I have never "talked" to anyone who has had those feelings, still don't know if that is what you guys are feeling or not. I would like to know if that is what y'all are feeling.
Would like to hear back. I sure hope you get some answers soon HTM
Michelle

 
Old 10-22-2006, 11:56 AM   #15
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Re: Nerve firings affecting my sleep

Michelle,

The only way I can describe it for me is like all my nerves are plugged in...almost vibrating (I have had interval visible vibrating a few times when I get in bed). The plugged in nerve feeling is pretty much a constant to some degree, though gets worse at times than at other times - it feels VERY uncomfortable. It does feel more prominent in my arms, I get intermittent hand tremors...comes and goes, though it's also in my legs as well - my reflexes are fairly hyper as well, again somtimes worse than other times. I have a lot of neck pain and arm pain too. Not to mention all the other stuff I mentioned in my earlier post. It has been a crazy, horrible ride. I am just trying to be hopeful that I will get some relief somehow. I just saw a neurologist at a large university teaching hospital 2 days ago...I pass all the neurological testing other than hyperreflexia, which is "not necessarily pathological and many people have hyper reflexes." Weird, I never have before until all my neck stuff came down...just conincidental? My dizziness, twitching, feeling like crap....none of this is related to my c-spine? All the weird neuro stuff started 4 months after my disc protrusion (which ocurred 13 months ago), huh...docs can't figure out any other problem....hmmmm...I just keep hoping this is not a permanent condition as it REALLY sucks. Sorry for everyone else dealing with all of this as well. Keep us posted. Mona

 
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