My Doctor wants to know..............

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My Doctor wants to know..............

Postby hayla2 » Wed May 16, 2007 6:58 pm

Ok, I went to the doc the other day. He is finding some links to Chiari and Narcolepsy. All the chiari cases he has also have narcolepsy. I told him that I have asked on here about it but got no response. He said, "well, how did you ask?" I said "I asked if anyone has narcolepsy." He said not to ask that way because most people aren't diagnosed with it that do have it. Why? Because they usually blame their symptoms on their meds or another disorder. He said to ask you all about the actual symptoms. He is doing research and would like to know. So, here goes it:

1. Cateplexy- After exerting yourself either through a job or even as little as laughing, you get very weak. You may even feel like going to sleep. Some actually do.

2. Sleep paralysis- Upon awaking or going to sleep you all of a sudden can't move your body. You want to move but your body doesn't. Also, it can involve not being able to talk when trying.

3 Excessive Daytime Sleepiness- tired all the time. needing naps.

4. Do you find yourself daydreaming while talking to someone; taking a little nap while sitting at a traffic light; falling asleep driving; going to sleep easily when reading a book or watching tv; going to sleep even on short trips while you are the passenger in a vehicle?

5.Sleep Hallucinations- waking up at some point in the night either hearing voices that aren't there or seeing things that aren't there--such as, I wake up seeing spider webs everywhere that aren't really there. The other day I saw an evil snowman at the edge of my bed. Once I got completely awake I realized it was gone.

6.Automatic Behavior-is the spontaneous production of often purposeless verbal or motor behavior without conscious self-control or self-censorship.

WITH NARCOLEPSY, YOU DO NOT HAVE TO HAVE ALL THESE SYMPTOMS. YOU CAN HAVE JUST A FEW!

Many people blame meds for these. It is worth checking out if you have any of these symptoms. My doc thinks that people with Chiari are prone to have this disorder. It will be interesting to find out how many have any of these symptoms. My daughter, son and I have them. My daughter is doing well on Provigil. It keeps her awake. My son and I will have our sleep study soon to confirm it. There are two tests to diagnose: Blood test and sleep study. The blood test states that my son has it.
Thank you for you time. Melissa
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Postby kathymichelle » Wed May 16, 2007 7:16 pm

hmm. I have to bring this to my doc's attention. Makes sense with the info that you brought to us.

Thank you!
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Postby mac » Wed May 16, 2007 8:55 pm

Melissa, this is fascinating...this is what I might mention to your doctor. Many many people with Chiari also have either posterior brainstem compression, or retroflexed odontoid with anterior brainstem compression. Many of the things you listed are what we call red flags for brainstem compression. Sleep apnea, breathing difficulties, swallowing difficulties are all red flag sx of brainstem compression.

Also, many people with Cm have craniocervical instability (CCI) and this in turn causes brainstem compression. So, this might be the link for him to understand why "narcolepsy" seems connected to CM.

I definitely have some of those sx. I do not have CM, I have CCI. When I wear my CTO vest in the car, it positions my neck in such a way that yes, I go right to sleep. It's very odd.

I am really impressed with your doctor who is open to your connecting with people on the internet! Bravo for him!! Tell him I think he's "aces!"

mac
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Postby donbr » Thu May 17, 2007 5:02 am

This is interesting, Heidi does have a couple of these symtoms and I dont think its the meds, started before she was taking her assortment shes taking now.
Mellisa do you have any of the links that connect the two if not thats ok you did say it was your dr that had them but it would be good info to have
Take care
Don
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Postby hayla2 » Thu May 17, 2007 6:29 am

No links. Doc just started his own research. I hope with what info he gets that it will help all of us lead a better quality of life. It is good to know, though, that I am not insane. I thought that the hallucinations and hearing voices at night were me being insane. It all makes sense now. Melissa
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Postby svennobalance » Thu May 17, 2007 8:58 am

Weird - I had a sleep study about ten years ago because a doc was sure I had narcolepsy - I had several episodes of cataplexy right after taking an anti-depressant - which I stopped immediately. That was the only time though. The test just showed I had severe insomnia and that was it. For other reasons I pretty much quit docs and never did follow up.
Gabriel
chiari, decompressed dec 05, syrinx, hydro, baclofen pump October 2007, rev jan '08, VP shunt April 2009
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Postby Sandy » Thu May 17, 2007 11:02 am

Melissa,

I do have several of these. I thought it was meds or me being crazy. :oops:

Now I don't feel so bad. And no you're not alone! You can share with your doc that I, too, share some of these.

love,
sandy :D
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Postby dizzy2 » Fri May 18, 2007 9:02 pm

Hi I just read this and I am so amazed! I have had almost the same exact symptoms. I have seen not spider webs I've seen a huge spider hanging from a web a few yrs ago before I even had any symptoms. I could swear it was real! My husband thought I was crazy. I even looked for it after he looked for it. It was so real. It also happened to me a few months ago. The same thing. That same spider. I also experienced the sleep payalysis. That was last summer. Before any of the symptoms I have now. Which is tinnitus, dizzyness, palpitations, sensitive to sounds, sensitive to light, neck stiffness, sometime difficulty taking a deep breath. It was so weird. I called my dr. after I could roll over in bed and he told me to come to er to make sure I didn't hava a stroke. It all went away and I was told it was probably anxiety in a dream state. So I took a Xanax and went home. I am so afraid of this happening again. I didn't even know where I was for a few minutes. I had to familiarize everything in my head, my kids faces, names, the rooms in my house. It was just so weird. I don't have actual narcolepsy but I do get tired easy. Even from just going to the movies.

I am waiting for am MRI for my spine. My nl seems to think my sx are not from cm 1 (that's what I have - 7mm herniation). He thinks I should take xanax 2x a day and see him in 2 weeks. He says my herniation is mild and I have nothing to worry about unless I have other sx. He wont tell me what they are because he thinks I will cause my own sx.

Anyway, it is so nice to know that I am not the only one who has experienced this. I thought I was going nuts!

Thank goodness for dr.'s like yours who want to find out more about this disorder!

Hope all gets better for all of us

Blessings,

Lidia
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Postby kalb15 » Sat May 19, 2007 12:44 pm

I am very sorry to hear that you are having these problems but it is releaving to hear of someone else experiencing symptoms similar to mine. I posted about narcolepsy a while back and did not get many replies.

I was diagnosed with narcolepsy in 1999. This was almost 10 yrs. after I was involved in a severe auto accident and started experiencing strange symptoms. I went to many doctors and specialists before getting this diagnosis. The MSL test was supportive of this diagnosis and I began taking medication. Unfortunately, this did not help me and I later went to the Mayo Clinic for a new evaluation.

The Mayo Clinic did not think I had narcolepsy but gave me no good answers. I had many tests done there but did not repeat the sleep study at that time. During this time I was also experiencing upper back pain that became more severe in the last few years. I went to a neurosurgeon in 2006 who did an MRI and this is when I found out that I had a cervical syrinx. He does not think I have Narcolepsy either.

I have since gone back to the neurologist that originally diagnosed me with Narcolepsy and he still stands behind his original diagnosis but is referring me to another specialist for another opinion. Sorry this is so long but I am very interested in what your doctor tells you as well.
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Postby daynthelife » Sat May 19, 2007 12:52 pm

I too share a few of these sx and have not been dx with narcolepsy and I DO NOT have CM...I have SM...I hope this helps..

much luv,

Kathy
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Postby hayla2 » Sat May 19, 2007 5:22 pm

My son doesn't have cm/sm and he has the symptoms too. My daughter and I have cm/sm and have the symptoms. I hope we can all get to the bottom of this. Melissa
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Postby dizzy2 » Sun May 20, 2007 5:59 pm

This is strange and releiving at the same time. I don't have narcolepsy but I do get really tired at times. My nl thinks my sx have nothing to do with my cm. I was sent a questionare from TCI but I did not think to let them know about this sleep hallucination thing. It only happened to me a couple of times but it was really strange. They are going to review my MRI and my questionare and tell me what other tests I should have done. I am scheduling a cervical MRI to check for a syrnx but what I really want to know is my CSF. I want to see if there is any blockage. My nl never even heard of a CINE MRI. I'm hoping when TCI sends me the perscriptions for the tests needed, my nl will send me for them. He doesn't think I have a syrnx due to lack of symptoms for it. But who knows. I'm hoping I don't. I just know that I have my good days and bad days. I can go about my day no problem some days, and then I have days where I can't get up off the couch. Why? This is so frustrating! I just want to be normal. Everyday! I really hope that something can be done for us. I have to kids who really need my attention and sometimes I just can't do anything. Do you feel this way too? How do you manage this? Right now I am having breathin issues again. I haven't had them in a few months. But now I have to fake a yawn sometimes to take a full breath. Very annoying. It makes it hard to do daily things. It takes my energy away sometimes. Well when you find out what your dr. comes up with, I'd really be interested in his answers. Keep us posted.

Stay well and blessings to you,
Lidia
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Postby Danialla » Sun May 20, 2007 9:19 pm

I have sleep apnea, a combination of central (due to the chiari) and obstructive. I currently use a bi-pap machine while sleeping and take provigil during the day.

I had surgery for my chiari in 1996 with wonderful results, but the apnea among some other weird things, seem to be some residual problems I can't seem to kick.

Good luck
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Postby dizzy2 » Mon May 21, 2007 2:42 pm

Would you say the surgery is worth having? I am so scared but I am thinking I just want most of my symptoms to go away. I have not seen a cm dr. yet. I'm going to soon. Do you get dizzy or did you before surgery? I am 40 years old and I feel healthy enough but I worry about age and surgery. I just don't like the feeling of knowing I wont get better.

Hope you have a pain free day

Blessings,

Lidia
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sleep

Postby hoz74 » Mon May 21, 2007 3:22 pm

I am glad I am not the only one with these problems. The sleep paralysis is a huge one for me. It scared me silly the first couple of times it happened. The strange thing is it only happened to me AFTER my chiari surgery, Never before, the same with not sleeping a full night at all. I am scared to fall asleep period because of the sleep paralysis thing, its horrifying sometimes. As for having to make the decision to have the surgery that was a absolute yes I had to have it done because my cerebral spinal fluid flow was almost completely blocked off so if I didnt want to be paralyzed I had to have it done. I was dizzy all the time before the surgery and now I am rarely dizzy. that was a huge symptom for me.
Hoz
ACM decompression surgery sept 06
Lord Keep your arm around my shoulders
and your hand over my mouth
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