Jump to content


Photo

Narcolepsy And Vitamin B12 Deficiency?


  • Please log in to reply
4 replies to this topic

#1 DevonKay

DevonKay

    Member

  • Members
  • 21 posts
  • Gender:Female
  • Location:Mississippi

Posted 05 December 2012 - 06:38 PM

I was diagnosed with Narcolepsy about a month ago after an MRI/MRA, blood work, and sleep study. My study wasn't 100% positive for Narcolepsy, but I was given the diagnosis anyway based on my symptoms. I posted about my diagnosis here not too long ago, but I'll go ahead and mention that my symptoms include EDS, time lapses, automatic behaviors, sleep paralysis, cognitive issues (memory lapses, inability to concentrate or focus, etc), and mild cataplexy. I also have vivid dreams, and I'm often unsure whether something was a dream or not. I'm not sure if these are instances of hallucinations, though I do believe I've experienced auditory hallucinations in the past.

As for my sleep study... During the PSG, I was already in REM before I even fell asleep, and I had 71 disturbances. My sleep efficiency was 91%. During the MSLT, I slept for all 5 naps with an average sleep latency of 6 minutes. The results show I only had one REM nap, even though I recall dreams and even experienced paralysis during one of the other naps.

The point of this post is that my doctor recently suggested more blood work to make sure there wasn't anything else going on and to try to determine any other reasons for my daily migraines. It was discovered that I have a severe vitamin B12 deficiency. She called today to tell me and instruct me to make an appointment with my GP. She said she still wanted to see me at our next appointment to "discuss everything."

I've done some research about the B12 deficiency, and I see that it could explain some symptoms (or at least just make them worse). But I also believe some of my symptoms can't be explained by the deficiency. I guess I'm afraid this new information may result in my neurologist retracting my Narcolepsy diagnosis and that I'll have to go without medication for N if I need it.

Has anyone else had experience with B12 deficiency?

#2 DeathRabbit

DeathRabbit

    Member

  • Members
  • 1,092 posts
  • Gender:Male
  • Location:Rocket City, USA
  • Interests:Music, video games, exercise, hookah, not feeling like crap

Posted 06 December 2012 - 12:44 AM

I was diagnosed with Narcolepsy about a month ago after an MRI/MRA, blood work, and sleep study. My study wasn't 100% positive for Narcolepsy, but I was given the diagnosis anyway based on my symptoms. I posted about my diagnosis here not too long ago, but I'll go ahead and mention that my symptoms include EDS, time lapses, automatic behaviors, sleep paralysis, cognitive issues (memory lapses, inability to concentrate or focus, etc), and mild cataplexy. I also have vivid dreams, and I'm often unsure whether something was a dream or not. I'm not sure if these are instances of hallucinations, though I do believe I've experienced auditory hallucinations in the past.

As for my sleep study... During the PSG, I was already in REM before I even fell asleep, and I had 71 disturbances. My sleep efficiency was 91%. During the MSLT, I slept for all 5 naps with an average sleep latency of 6 minutes. The results show I only had one REM nap, even though I recall dreams and even experienced paralysis during one of the other naps.

The point of this post is that my doctor recently suggested more blood work to make sure there wasn't anything else going on and to try to determine any other reasons for my daily migraines. It was discovered that I have a severe vitamin B12 deficiency. She called today to tell me and instruct me to make an appointment with my GP. She said she still wanted to see me at our next appointment to "discuss everything."

I've done some research about the B12 deficiency, and I see that it could explain some symptoms (or at least just make them worse). But I also believe some of my symptoms can't be explained by the deficiency. I guess I'm afraid this new information may result in my neurologist retracting my Narcolepsy diagnosis and that I'll have to go without medication for N if I need it.

Has anyone else had experience with B12 deficiency?

I have slightly decreased B12. Sublingual liquids are the best. Your body can't absorb too much at one time, so those pills with like 5 bajillion percent are practically useless. They are only that high to maintain efficacy on individuals with malabsorption issues, which I am guessing is not your case. I dont think the vitamin deficiency cancels out the N diagnosis. N causes all sorts of wonkiness with neurotransmitters, hormones, etc. But if you get that level back up to normal and you still feel like carp, well then that makes your case pretty airtight. So yeah, they're kinda expensive, but I would try a sublingual liquid. It's a win win. If it cures you, yay you're cured! If it doesn't it should at least help your energy a tad and prove that there's something more serious going on than not getting enough b12 in your diet. Bon chance!

#3 DevonKay

DevonKay

    Member

  • Members
  • 21 posts
  • Gender:Female
  • Location:Mississippi

Posted 07 December 2012 - 03:26 PM

Well, I went to the doctor today about my B12 levels, which aren't as "severe" as I was led to believe. They're at 155, which is definitely on the low side, but he doesn't suspect an issue of absorption. He also said in otherwise healthy patients, restoring B12 levels results in a 10%-15% increase in energy. He says this doesn't account for my Narcolepsy symptoms, so I suppose I have both issues.

He wanted to start me on B12 injections today, but (and this is embarrassing) the length of the needle and the nurse telling me, "These really hurt," caused me to have a panic attack in the office. I left without the injection and with a list of supplements to try for now. I asked about prescription B12 and sublingual liquids, but they refused to listen to me. "We only do injections here." So this is frustrating.

Anyway, I see my neurologist Wednesday. Hopefully, she doesn't question my diagnosis in light of my B12 deficiency. If she does, I'll seek a second opinion

Thanks!

#4 DeathRabbit

DeathRabbit

    Member

  • Members
  • 1,092 posts
  • Gender:Male
  • Location:Rocket City, USA
  • Interests:Music, video games, exercise, hookah, not feeling like crap

Posted 07 December 2012 - 04:30 PM

Well, I went to the doctor today about my B12 levels, which aren't as "severe" as I was led to believe. They're at 155, which is definitely on the low side, but he doesn't suspect an issue of absorption. He also said in otherwise healthy patients, restoring B12 levels results in a 10%-15% increase in energy. He says this doesn't account for my Narcolepsy symptoms, so I suppose I have both issues.

He wanted to start me on B12 injections today, but (and this is embarrassing) the length of the needle and the nurse telling me, "These really hurt," caused me to have a panic attack in the office. I left without the injection and with a list of supplements to try for now. I asked about prescription B12 and sublingual liquids, but they refused to listen to me. "We only do injections here." So this is frustrating.

Anyway, I see my neurologist Wednesday. Hopefully, she doesn't question my diagnosis in light of my B12 deficiency. If she does, I'll seek a second opinion

Thanks!


The sublinguals are OTC actually. You can mosey on down to Walgreens and get some! And don't be embarrassed about the needle thing. Lots of brave people have that issue too. My marine buddy still gets ill at the mere site of a needle and has to look away whenever he gets stuck.

#5 bluesbrother20

bluesbrother20

    Member

  • Members
  • 6 posts
  • Gender:Male
  • Location:Northern New Jersey
  • Interests:Sports,boating,wakeboarding, jet skiing, segways

Posted 10 December 2012 - 01:11 PM

Well, I went to the doctor today about my B12 levels, which aren't as "severe" as I was led to believe. They're at 155, which is definitely on the low side, but he doesn't suspect an issue of absorption. He also said in otherwise healthy patients, restoring B12 levels results in a 10%-15% increase in energy. He says this doesn't account for my Narcolepsy symptoms, so I suppose I have both issues.

He wanted to start me on B12 injections today, but (and this is embarrassing) the length of the needle and the nurse telling me, "These really hurt," caused me to have a panic attack in the office. I left without the injection and with a list of supplements to try for now. I asked about prescription B12 and sublingual liquids, but they refused to listen to me. "We only do injections here." So this is frustrating.

Anyway, I see my neurologist Wednesday. Hopefully, she doesn't question my diagnosis in light of my B12 deficiency. If she does, I'll seek a second opinion

Thanks!

Hi Devonkay I also have a vitamin B-12 issue as mine was not as low as yours but at 267. 155 is very low considering that it is supposed to fit between 200-1100. For me I have a few auto immune disorders one is POTS and one I believe is pernicious anemia. Pernicious anemia is a disease where large, immature, nucleated cells (megaloblasts, which are forerunners of red blood cells) circulate in the blood, and do not function as blood cells; it is a disease caused by impaired uptake of vitamin B-12. true pernicious anemia results from an autoimmune condition that impairs absorption of dietary vitamin B-12, resulting in vitamin B-12 deficiency. Vitamin B-12 deficiency of any cause will result in anemia and neurologic symptoms. Doctors don't seem bothered if you fall in range but with auto immune you need to be much higher and i think I read some where that for me I would need it to be in the 700 range. I take nature bounty sublingual b-12 2500 mcg tablets. I was deficient in Vitamin D as mine was 25.