Lovemyhusband

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From what you are describing, I am concerned about your medical team.

 

Do I understand correctly that you are also diagnosed with Epilepsy or a seizure disorder?

 

I would suggest that you make an appointment with a Sleep Medicine Specialist who is part of an group practice or University. If you are a "one of a kind" patient, you need to be very selective about who gets to diagnose you.

 

I am not doubting that you are truthful about what you were told. However, what you were told does not make sense to me and sounds sketchy. I experienced the "I've never seen this" before myself. It was reassuring to find a doctor who had seen it before and knew exactly what it was.

 

The "first for him" is a red flag to me. What were the qualifications of that Specialist you saw. Also, do you still have that video and would you be comfortable posting it?

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From what you are describing, I am concerned about your medical team.

 

Do I understand correctly that you are also diagnosed with Epilepsy or a seizure disorder?

 

I would suggest that you make an appointment with a Sleep Medicine Specialist who is part of an group practice or University. If you are a "one of a kind" patient, you need to be very selective about who gets to diagnose you.

 

I am not doubting that you are truthful about what you were told. However, what you were told does not make sense to me and sounds sketchy. I experienced the "I've never seen this" before myself. It was reassuring to find a doctor who had seen it before and knew exactly what it was.

 

The "first for him" is a red flag to me. What were the qualifications of that Specialist you saw. Also, do you still have that video and would you be comfortable posting it?

 

 

My first mild seizure caused me to be taken by ambulance and they brought in our local neurologist. I live in a small-ish suburb but everyone seemed to recommend him. I was given an epillepsy test and he said I did not have epillepsy or any seizure disorder. He told me that they were more than likely due to lack of sleep which is fairly common. He then set me up with a sleep test which he sent the results to a sleep specialist. I was "100%" diagnosed with Narcolepsy less than two days later by the specialist. Myself and the specailist did not speak a lot because, to be honest, I did not hear what I wanted to. I have other medical conditions that cause my organs to shut down so I was hoping that the Narcolepsy/lack of sleep in general was what was causing my organs to function improperly or cause them to not function at all for periods of time. He told me that this was not the case and could not be. At the time, my narcolepsy was just a medical "thing" to me that caused me to be sleepy so I did not want treatment for it until it worsened. I have not spoken to him since. I went to the ER for my recent "attack" because I had on-going pain on the right side of my head but the ER doctor sent me home and called it syncope because he was not educated on the matter. I am calling my neurologist tomorrow since the pain is still there to see if it is a narcolepsy thing or what. I do not have the video anymore, but I will record it the next time that it happens and post it.

I do not know if I was misdiagnosed but the sleep facility staff and the neurologist both said prior to the specialist that something was going on and it was not apnea hah. That is why I joined the forums. To hear of other people's general attacks and diagnosis and everything else to get an idea of if this is what is going on with me because I did not speak much with the specialist. I am concerned about the "attacks" that I have been having and wondering if I do need to see another doctor or if I need to just go speak to my sleep specialist for the supposed narcolepsy.

I too am a very "I've never seen this before" case with a lot of my local doctors. I have dealt with well over a dozen doctors within a 50 mile radius that have not been able to diagnose my other issues and will soon be going to Cleavland Clinic to try to find a definitive diagnosis for the organ issues. I am actually moving to a nearby large city in about four months to gain access to better medical teams and hospitals. I am planning on starting fresh and letting some new minds into the mix to see if they can figure ALL of it out. Maybe it is all related, I have no idea.

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Did you just do the overnight PSG and not the MSLT? It seems a little odd to get "100% diagnosed" based on that alone.

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Did you just do the overnight PSG and not the MSLT? It seems a little odd to get "100% diagnosed" based on that alone.

 

I went for both. :) I probably should have mentioned that. My apologies.

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Narcolepsy does not cause pain. If you are having pain, it is for a different reason.

 

It sounds to me like you have a general misunderstanding of what you are experiencing and why. This was very difficult for me when I was at that point. I did not know what was happening to my body and my mind.

 

This is a good place to ask questions, learn from others who live with this and make sense of your experience.

 

I am glad to hear that you are pursuing better medical care. Can you set an appointment with the specialist who diagnosed you? It sounds like a game of "telephone" between him, your neurologist and you. It sounds like a lot is getting lost along the way.

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Narcolepsy does not cause pain. If you are having pain, it is for a different reason.

 

It sounds to me like you have a general misunderstanding of what you are experiencing and why. This was very difficult for me when I was at that point. I did not know what was happening to my body and my mind.

 

This is a good place to ask questions, learn from others who live with this and make sense of your experience.

 

I am glad to hear that you are pursuing better medical care. Can you set an appointment with the specialist who diagnosed you? It sounds like a game of "telephone" between him, your neurologist and you. It sounds like a lot is getting lost along the way.

 

I do not have pain associated with the supposed narcolepsy usually. I know that the pain is seperate chronic issues that are dealt with individually. I was just told that this past event sounded like my first real narcoleptic attack so I was unfamiliar with the symptoms. I did not know that the head pain was not normal. That is why I ended up going to the ER but the doctor was a doof who didn't bother to help anyways. What can ya do? <_<  It will forever be a mystery now, hah.

Thank you for your concern and curiousity. I am going to wait until I get into the area to schedule an appointment. I want to check out the facility, read some reviews, and really get 'into' the new specialist before choosing, for lack of a better term. I do not want a repeat of last time where if there is not an issue then we are not in contact. It is difficult to find a specialist that manages to focus on just one thing without becoming curious about all the other medical issues. Hopefully a bigger city will allow me to do that. I am still young - I have time to get a few opinions and find a forever doctor. :)

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Hello, I'm Jennifer and I'm 37 years old. I was diagnosed with N w/ C on 1/2/2014. I'm still trying to understand, even though the diagnosis itself makes complete sense of what I have been dealing with for many years. I also have chronic pain and have an amazing pain management doctor.

My sleep doctor is a different story. We're still trying to get the meds to work properly... but it's extremely difficult when you have a dr that won't "listen" to you and no one to really talk to that actually understands. My husband tries, but it's very hard on him and the kids.

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Glad to find this site. 44year old woman married small business owner and mom. Symptoms the last four years have become increasingly worse and finally saw a neurologist two weeks ago. Since then I have been devouring everything ni can find and though initially I was elated to be told I am not the lazy clumsy anxious mess I had told myself, the more I learn the more I put the personal pieces together and realize how very badly this has been affecting my personal and professional life. Learned last night from husband that I must be having a lot of auto behavior at might with him as I have acted very rudely with absolutely no memory of it. I was convinced he neglected to tell me things like obligations or plans and accuse him when it was me all along. At work I have told my staff more than once that they never told me something. Excuses I told myself

You are overworked, anxious, dehydrated overtired don't have an understanding partner, nightmares and sleep paralysis are just normal. Everyone has to crash they teat too much, consuming ten diet sodas and a coffee a day is my normal while avoiding anything other than bits of chicolate at work. I am just a night owl, I am a rotten mum for napping rather than bikjng with my son even when he begs. What kind of mother can't drag herself up to play with her son when she slept 9 hours the night before? doesn't everybody dream all night long I have a very creative mind I can't be bothered with small things like my keys or even more than once wearing two different shoes to work, knocking everything over by accident, sneakily setting phone alarm for ten minutes at work because i am so slerpyetcetera etcetera etcetera. I guess it will take awhile for the guilt and fear if deterioration to pass. Can't thank all of you in these boards enough as reading like symptoms and stories as well as the optimism and humor have helped more than u build possibly put into words.

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Maybe you just need a multi-vitamin........... (just kidding)

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Maybe you just need a multi-vitamin........... (just kidding)

 

Ok, just spit out my drink laughing! Yep, that multivitamin will fix everything! Ah, that laugh felt good. 

 

Toren, so glad you are here, and trying to get the help you need. I can completely read the frustration in your last post. (hug) This is a great board. While I'm one of few who do not have narcolepsy, my son does and I have to admit that I've heard some of the same type of comments. The tone sometimes is that if I were a better mother then I would do XYZ and he wouldn't have the problems he does. Yeah, thanks a lot.  <_<

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If you were not a good mom, your son would not have a diagnosis, he would be sinking in school, and you wouldn't be here learning and helping others.

Or, maybe he is reacting to something at home......again, just kidding

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My name is Victoria. I was just diagnosed with narcolepsy on Wednesday. I'm going to turn 26 next month, and my symptoms started when I was 12-13, as best as I can tell. They started treating me for depression when I was 13, and I had my first sleep study around that time.... But they were just looking for sleep apnea, so nothing ever came of it. I had another test two years ago, but again nothing.

 

Anyway. I went from really excited to FINALLY have a diagnosis, to crying about what my life could have been if this was caught and treated correctly from the get-go, to feeling somewhat ambivalent today. My doctor started me on meds right away and they do seem to be working, so here's hoping I can get my life on track.

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I get it - completely. I bounced around the 7 stages of grief and eventually landed on acceptance. Don't resist what you are feeling- but don't cave into it either. Just know that things will be alright.

I was not diagnosed until age 45. I get regret. But I have also enjoyed my life and will continue to. Any of us could have been hit by a bus years ago. What we have experienced makes us who we are. You will use this experience to help yourself and help others- in time. Just take good care of yourself physically, emotionally and spiritually.

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Hi, I'm Colleen, 21...I was diagnosed December 2012 when I was 19 in my sophomore year of college. I love sloths, they're my spirit animal! I'm in school for game design and development. My symptoms are getting worse so I came here to talk to people who understand...no one in my life really understands...you know? :( I want to learn how to cope with this better. I feel kinda lost.

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Aloha, Colleen and everyone else. This is my first post on this forum too. I looked for another sub-forum for new members or introductions or whatever but, couldn't find one. So, Hello. I'm Jay. Undiagnosed. Untreated. And getting worse.

 

Until about 6 months ago I didn't know that Narcolepsy with Cataplexy existed. Now, I'm feeling both relieved and overwhelmed at the same time. I understand.

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Hi, Jay. I've been there and I know how you feel...you should schedule a sleep study as soon as you can. My life was hell before diagnosis.

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Welcome Jay and Colleesi! I hope you guys find support, knowledge, hope, and friendship here- I know I did.

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Well, my name is James, but you can call me Kriqit (pronounced Cricket). I have no definitive diagnoses other than a neurologists hunch and my symptoms matching. I joined because I can relate to almost everything here, and how being tired is possible for a 22 year old. Sleep specialist appointment coming, though.

Hope to make some friends, and if anything, learn a bit about such a rare thing.

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Hi, James! I haven't been here long but it looks like you came to the right place...let us know how your sleep appointment goes!

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Hi guys! I'm Emily. I was diagnosed about 4 months ago with N w/o C. It only took one MSLT for my doc to confirm the diagnosis (average 3 minutes 5 seconds even had accompanying hallucinations).

I'm 20 years old, trying to balance college work (I'm an aspiring scientist) with all of my N symptoms! That's why I'm here; learning to cope. And hoping to make some internet friends who understand what I'm going through :)

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So glad you got a dx so quickly. Take good care of yourself

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Welcome James and Emily!

 

Best of luck with all of your health concerns, and keep posting.

 

The more this community grows, the more support and knowledge we'll all have to benefit from.   :)

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Hi'dy.

 

I'm Tiffany. Diagnosed in Sept 2013 N w/o C based on the sleep latency, I had one SOREM, and the history of hh and sp. After the diagnosis and reading about n, I did find a lot of explanation for the strange things in my life and am relieved that there is an explanation that isn't paranormal and whenever those symptoms turn up I can say to myself chill out it's just the N.

 

I feel really silly or like a hypochondriac  when reading some of the posts because I'm like OMG ME TOO, meee toooo.

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Hi'dy ho! Welcome!

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Hi Tiffany, our situations sound very similar. I was diagnosed in April after an MSLT I didn't realize I was going to be having (I thought I was having the PSG only--office sent me the wrong paperwork, you can imagine my surprise when I realized I was being tested for narcolepsy, much less being told I had it.) It's been a very confusing time. My sleep latency was around five minutes (most were 2-3 with one outlier) and one SOREM as well. I also have HH and occasional SP. So anyway, welcome. I think you will find these boards helpful, I certainly have.

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