Discussions By Condition: Medical Stories

More than just narcolepsy?

Posted In: Medical Stories 11 Replies
  • Posted By: sleepytingle
  • January 13, 2007
  • 08:45 PM

In the past two years, I have been diagnosed as Bi-polar and narcoleptic. Now, I am getting tingling sensations on the back of my neck/shoulder region, pain in my foot (burning) and other forms of paresthesias. I am not diabetic. Can these problems be related to one underlying issue? Can the sleep disorder and nerves be related? Please help if you have any clues...:confused:

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  • can you read my thread when you get a chance? I have idiopathic hypersomnia . I have many other health issues but it started with the sleeping disorder. My doctor thinks I have Narcolepsy, but we didn't catch the paralysis (which I have quite often) and the dreams that are so real I try to scream. Why do they think you are bi-polar? Do you agree with them? I find that the sleeping problem, pain, and the 'sleep attacks' often cause me to not be 'myself' and it would be easy to think my reactions were caused by depression. Let me know what you think. I don't want you to let things get to the point I have come to in my life. If I had gotten to the bottom of things and stuck up for myself more earlier on, I wouldn't have the mountain of symptoms to sort through for a clear diagnosis today.
    Lindsayx12 29 Replies
    • January 13, 2007
    • 10:41 PM
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  • I was diagnosed as bi polar first. I have depression, I am sure of that. I can cry for hours at a time about nothing. I am not too sure of the mania, however I do start a lot of projects and not finish and I make bad financial decisions on the spur of the moment. Both of these are symptoms of bi-polare (manic-depression). I agree with the narcolepsy diagnosis because of my sleep study test results...can't argue with those. I fell asleep under three minutes four times - once under a minute. But what I am trying to figure out is the 'side effects' of this sleep disorder. I am having burning pain (in one spot) and tingling sensations in a lot of peripheral areas. I want to know if it is related or yet another illness.
    Anonymous 42789 Replies
    • January 14, 2007
    • 02:30 PM
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  • I am undergoing some of the same at this time. I have had an MRI and have white spots in my brain. They are testing me for MS now. I will have a spinal tap on Monday to confirm the diagnosis.I too fall asleep for no reason in movies, visits, reading, at dinner...for about 5 minutes or sometimes more. I have not been diabnosed bi polar but often think of this too. I have mass pain in my hip area and have numbness in my face, one side, Migraines and uneven pupils.I wish you all the best and keep asking questions. Make a list of things when you go to the doctor and hand it to him. Help them to help you. If you do not find the answers at his office seek them elsewhere.
    Anonymous 42789 Replies
    • January 14, 2007
    • 04:52 PM
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  • I understand the crying thing, yes you could be depressed but bi-polar sounds a bit extreme.I have lived with a bi-polar person, and I know there are varying degrees, but I think the stress of being so tired and having your sleep control your life can cause a lot of your depression. If the med's are the same, I wouldn't worry about the bi-polar diagnosis (if you are taking something really stong for bi-polar, then I would be concerned). My ex-boyfriend, once I found out he was bi-polar, I could see the mania and the depression pretty clearly.I know sleeping disorders can cause the neurotransmitters in your brain to not work properly, and certain depression meds and stimulants work well for some people with narcolepsy. I know first hand, that being so tired, sleepy, in pain, having symptoms change often can also make it difficult to remember things. I have made bad financial decisions but so do people without any illness. It is part of life and learning, it doesn't make you bi-polar. I also start projects, move on to something else, don't finish some, forget important things I never would have forgotten before I felt so poorly. I know I'm not bipolar but I have been mildly depressed.My only concern about the depression issue is that for nine years I was told I was 'tired because I was depressed' when in fact 'if I was depressed, it was because I was so tired' that I was not able to do the things I wanted or needed to do. I spent ten years on depression meds and my sleeping, and now my entire body and its systems, are not functioning. I have hypothyroidism (Hashimoto's), diabetes type 2, fibromyalgia, Raynaud's syndrome, idiopathic hypersomnia (narcolepsy), low body temp., mitrovalve prolapse, and now shortness of breath. I am thin so it's not a weight thing. I am in so much pain and sometimes I can't find the words or sometimes I can't say them correctly. Just don't want you to attribute these additional symptoms to depression if something else is causing them.Do you have digestive problems? Look at Celiac disease. Key it in google as Celiac and narcolepsy. I was on a gluten-free diet five years ago, and without the 90mgs of adderall and 20 mgs of Ritalin, I felt better than I do today. I spent a small fortune on a holistic program and for the first time in years, I felt no pain and was back on my rigid workout program. My doctors, when I was diagnosed with hypothyroidism, said not to waste my money on the holistic program. I greatly regret stopping the program now. I started out much like you. I was a sales rep, sleeping on the side of the road, crying, and I had restless leg syndrome. That was ten years ago. I'm 42 now. I was successful, had energy (limited though) to do the things I love, and today I am beyond broke, not able to work and I want to do so much with my life but I feel like I'm 150 years old.One of my holistic doctors helped write a book (he has written several) called 'Smart Medicine for Healthier Living, Practical A to Z guide'. It came up during my research. I haven't read it (I have to read it at the bookstore, really, I don't even have money for a book). Dr. Lavalle is the doctor that helped me so much. I also have tried accupuncture (it helped me to wake up and with pain) and chiropractors. If you need any advice/help from someone who has experienced many financial blunders and come out on top (I'm back on the bottom due to my illness now), I would be glad to help you. Don't be too ******n yourself about the crying, starting things and not finishing (hey, you may just be really creative) and sucky financial situations (if I can turn it around, just about anyone can. Besides, I couldn't have bought the learning experience i have 'enjoyed'(ha, ha) this past year of my health going totally south and surviving on little but faith in general, faith in myself and learning that a great friend or two(mostly one) can mean the difference between a good home with support and truly being out on the street. Let's get to the bottom of your illness so you don't have to (potentially)end up like me. It would be great for me to save someoned else the time, frustration, disappointment and feeling ill everyday and have you hitting the ground running each morning to enjoy the day.
    Lindsayx12 29 Replies
    • January 15, 2007
    • 03:40 AM
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  • I am very thankful for the information sent so far....anyone else have info for me? Suggestions?
    sleepytingle 2 Replies
    • January 16, 2007
    • 05:38 PM
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  • Just a thought or two...some your related symptoms...seem to originate in the thoracic area of the spine...don't panic...yet...that is the area above the lumbar region...now the easy part...x-rays done in the sitting position...to verify the level of the hips....when one hip is out of level with the other the ligaments in the hip area will actually put a slight "twist on the thoracic area"and results in many ailments...mine are out of level almost 3/4 inch The medical term is Congenital Hip Dysplasia or it has been changed to DDH...some experts believe one in a thousand people are affected...and it does not always show up until a later time due to lack of knowledge on the patient to ask for this set of x-rays...and it takes a neurologists with infra-red detection to verify....the nerve inflammationwhat makes this so confusing is that when examined standing-up...one set of "conditional symptoms" occur...when sitting a different set of "conditional symptoms" occur...and it took me viewing my own x-rays to be convinced this condition existed...actually I had the x-rays done myself...cost was 50 dollars... The docotor who did my x-rays stated in his 20 years of practice he had never done a set of sitting position...he is a sports injury specialists... I asked my Primary Physician if he knew why this was not standard practice as he had examined me 2 years ago...in the standing position...and my hips are within 1 centimeter of being level...I got the oddest look from him... He gave no reply... The thoracic area is the main area of nerves that control the auto-nomic functions...any slight pressure...doesn't have to be painful...will "impede" the signals...In my case the doctor had to lightly poke on my spine area till he found the inflammed nerves...until then, I had no noticable discomfort... I have had many conditions...raynauds phenomina...two heart attacks... two surgeries for tennis elbow...a year of physical therapy...which actually caused the raynaud's phenomina to happen...the nerve bundle responsible for all that activity is at the top area of the thoracic region...and it will "pop" when I go from standing to a seated position for a short time...within 15 minutes of sitting...or when I first get out of bed...I thought it was a normal occurance of life... What I had to realize is that when I layed down my left hip would sometimes lightly "pop" not painfully...which is the indicator of CHD...DDH...growing up with these events my body adjusted in many ways... I also made a devise that I layed down on...and with my blood pressure moniter hooked up...the upper spot that "popped" on its own and the numbers high and low....spread from 30 to a solid 40...heart attacks and palpitations...occur when these numbers do not have a good spread...and my pulse lowered from 85 to 70...with out meds... Knowing this I use meds to control the rate of change...toprol...to be exact...and it works like it is supposed to... the ability to focus the attention of the doctor and patient on this area may be difficult...I was hard to convince...and I may have uncovered a protocal they can initate...so keep this in mind...I am not a doctor and they would seem to verify this differently... I was not able to give the doctor sufficient data as my body was not telling me I was in pain...the nerves inflammed...and even thought the x-rays would indicate a problem in the lumbar area...the slight twist was only created when I sat or bent at the waist...stooped or squatted down... i will require hip surgeries to totally correct this condition...but only if I can get my heart strong enuff .... When that upper spot"popped" I immediately noticed better circulation in all affected areas of Raynaud's phenomina...and my feet...and it feels very relaxing...thus identifying one of the conditions that really exist...don't scold the doctor if they haven't been told of "conditional symptoms" I debated this issue with a neurologist for about a year that owed me a favor...he kept saying the irratation has to be there.. find it...this is how I found it... now is the scary aspect...my father had the same condition...and his last 3 years after major heart by-passes...were horrendous...all because of noone asked him to get x-rays in the sitting position...died early at age 65...I have kept my vow to him that I would find the cause... if you ever study this scenario, you will come to understand this nerve irratation can be responsible for over a thousand (1000)conditions... etono101@aol.com
    Anonymous 42789 Replies
    • January 24, 2007
    • 01:36 AM
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  • My goodness!:eek: Thank you soo much for the info.:) I am scheduled for a nerve conduction(?) test and will bring this up then.
    sleepytingle 2 Replies
    • January 24, 2007
    • 01:27 PM
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  • I can TOTALLY relate!!!! I was diagnosed with narcolepsy a couple of years ago...after 6 or 7 years of telling every Dr. that I saw(when I had the flu, or was pregnant) that there was something wrong. I too can sleep for days on end...and once, when I ran out of Adderall(which I take 80mg per day and still have trouble staying awake) had to pee so bad, but couldn't get out of bed for several hours :o Once I finally got some help to the bathroom I was in pain for several hours after that. I was SO frustrated that everyone wanted to write it off as depression....I'd say, "Heck yeah I'm depressed! But BECAUSE there are all of things that I want to accomplish, and I can't get out of the bed and STAY out of it to save my life!" They just couldn't seem to grasp that I was not sleeping so much because I was depressed, but depressed because I was sleeping so much :) I too was diagnosed with bi-polar disorder(about 2 years before being diagnosed with narcolepsy), but the meds that they tried me on, kept me asleep for days on end...so they decided that I just suffered from depression....and of course, it was making me sleep :mad: I've had some recent new symptoms evolve too...feet and toes turn purple and get these itchy bumps on the bottom and sides. At night they itch so bad that I can't sleep without cortizone cream, but then they just go away for awhile. My toes, feet and also sometimes my legs go numb(and also arms, hands too...but not as often, and only when sleeping), like they're asleep...BUT they never get that tickly "pins and needles" sensation as the feeling comes back.ALSO, at the same time the bumps on my toes come, the joints in my toes start to hurt. My blood pressure is very low..usually about 90/60. I've been having night sweats. I have low white blood cell count- 3.2. I have back spasms....they got EXTREMELY bad for a solid 5 months, and I was diagnosed with having 6 pinched nerves. Steroid injections in my spine for a few weeks helped for awhile, bue it's a year later now, and the pain is coming back. I found the "hip popping" info VERY interesting. My right hip pops, loud...but not painful at all...pretty much every time I lay down at night, or if I sit and then move my leg to the side. Just thought that was normal. Do you have "sleep paralysis" or "hypnogaugic hallucinations"? I usually only get them really bad or frequently when I don't take anti-depressents and/or am sleeping more. My nap avg. during my testing was about 2.5 min. too, and my first nap I fell asleep in less than 45 seconds. That was a miserable test :( I wanted to cry every time they came in and made me get back up. I'm only 27 and weigh 110-115 lbs....and I've been dealing with this for so many years that I don't have a clue what it feels like to just wake up and feel "refreshed". Best Wishes...If you find any answers...PLEASE LET ME KNOW!!!
    FixMEdoc 53 Replies
    • February 8, 2007
    • 01:54 AM
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  • Could be Lyme Disease.
    Anonymous 42789 Replies
    • February 8, 2007
    • 01:05 PM
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  • I have narcolepsy. In my research, I have found that narcolepsy is common amongst those with MS (MS is developed later on after initial diagnosis of narcolepsy). A guy I used to work with has narcolepsy also and was just diagnosed with MS. MS is an autoimmune illness, and they think narcolepsy is also (so are some of the other illnesses listed in this thread). Auto-immune illnesses are only 30% genetic!! They are 70% ENVIRONMENTAL!! That means we all have 70% chance of NOT developing one or developing it further!! I urge each and every person here to get and read the book titled "The Auto-immune Epidemic" by Jackson Nakazawa and Dr. Douglas Kerr. This book changed my life. If it weren't for that book, I wouldn't be getting better like I am. My neurologist said he didn't expect me to improve this much and that he is surprised. It's all because of that book. It shows you how to prevent from getting worse. I think this book should be required reading for every high school senior. Best of luck.
    Anonymous 42789 Replies Flag this Response
  • Yes, get tested from the correct lab (Igenex) and see a Lyme Literate Doc (LLMD)...this could be Lyme.
    Anonymous 42789 Replies
    • August 21, 2011
    • 11:29 PM
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