Could A Nurologist Miss Narcolepsy Or Am I Just Crazy

3 posts in this topic



I've been reading for ages and now have some courage to post. I am sorry this is so long.


I had the Swine-flu vaccine in jan 2010 and was hospitalized that night. I had a bad reaction to it (So I thought)! Two weeks later, an MRI and a trip to a Neuro later I am told I have a rare and severe subtype of migraine. Neuro just sends me off and says one severe migraine doesnt warrant medication. Two months later and I am living in a haze, i keep having funny turns where i can't talk or move. I am tired all the time. Back to Neuro who suspects epilepsy, sends me for MRI, EEGs. All are clear and he starts me on Amitriptyline. By June I had a rough few nights with my young baby and after one night of no sleep I develop aura in my eyes that have never gone away. By November 2010 I am taken out of work by ambulance as I become temporarily paralysed, only to walk out of the hospital fine telling them I am under the care of a neuro and have 'rare migraine'. These little episodes happen quite frequently. I have 'long' episodes of a few minutes where my body hits a wall and I just pass out lying down. I can still hear but don't move or communicate. The 'short' episodes can be little collapses but I never injure myself as I always have time to get myself to the floor, or they can be loss of speech. I can be out for dinner with friends and suddenly my elbows are on the table and my head is in my hands, this passes in less than a minute. June 2011 and I am out of work for months, plagued by sleep paralysis episodes during daytime naps and unable to function properly. I go to my neuro crying and begging him for help and he sends me to a psychiatrist who i visit 6 times, she tells me i have no mental, personality, depressive, anxiety problems and any panic or anxiety I do have stems as a natural reaction to my 'migraine'.


My neuro never fully explains anything to me, he gives very little info and I stagger on in the belief that most of my symptoms are side effects to the drugs I am on.


By early 2013 I am plagued by strange 'episodes' when walking up, from halucinations and chest pains. I go to the ER after one bad morning of hallucinations and chest pains. The doc there rings my neuro as I am seen to be 'complex' and says to me. I am so sorry you have this but i feel you are plagued by anxiety and stress from it. I told him a psychiatrist disagrees and he sends me off.


my Amitriptyline is increased again. Within 3 weeks of the chest pain incident, I go again as i have an incident where I drop to the ground and cannot move/speak. I collapse in the hospital, they admit me for a week in the special cardiac care ward and are baffled by me. They feel i am having a cardiac reaction to one of my meds. I see my Neuro while in there and he tells me I look 'down'. I am not down, I am shattered tired. I get released as my cardiac reaction to the med is stabilised. I am discharged with the word 'migraine' on my papers, even though the consultant at the hospital told me the night before that he had no idea what was wrong with me and I am a baffling case. They put me on a beta-blocker. (I now have 4 meds to take)


I go back to my Neuro demanding answers and a new treatment plan, he starts asking me about what treatment plan I was on for my 'migraine' before seeing him in 2010. My husband tells him there was none because I was never sick a day in my life before the swine-flu jab. Neuro looks up and pauses, he then says 'it may not be migriane' I need a second opinion.


I am out of work 6 months, my daughter is in pre-school, yet I am exhausted by the time I have to pick her up. I can wander around the supermarket in a haze and come home without proper stuff that I needed. I get back into the car to drive home and I need to sit in the car for 20mns before driving. I get home and sit in the car in the drive for 15mns for a rest before getting out of the car. I have gained lots of weight and crave sugar.


i am now left waiting months for this second opinion. During this time, I am weaning down on my medication (I asked for my Neuro's permission to do this). I have gotten a letter to be referred to a sleep clinic and I go there on Friday. I want to separate myself from side effects and see what the real me is.


The real me that has developed is as follows.


I am Plagued by hallucinations when falling asleep and when waking. I hear voices and I wake a million times a night for split seconds to do weird dreamthings like press a button on my pillow.


When I laugh, my knees buckle, when I am angry, my knees buckle. We were playing at the park the other day, my husband jumped out to frighten us and my knees hit the floor. I heard a bang outside the window and when i jumped out of bed to look out, my knees were on the floor. My friend introduced me to her colleagues the other day and had to tell them that I wasn't drunk, just unwell! I was hazed out and slurring my voice. (How embarrassing!!!)


I am inadvertently rude now. I can be having a conversation with someone (a few sentences) and I just walk off on them!! I've no drive to see my friends and as I am out of work, I miss them but I find socializing EXHAUSTING! I find life exhausting. I have a great life though, an amazing husband, wonderful little girl but why am I too unmotivated to enjoy it?


I only heard of Narcolepsy when the swine-flu link got media attention here in the UK in 2013. I googled it. I looked up cataplexy and I text my husband saying 'google cataplexy'. He rang me 5 mins later saying Oh My God, this is you this is you. I have found that I can get very moody and rude sometimes and this is distressing to me. I slept last night from 11.30 to 9.15 and was back in bed by 11.00. I am typing this in bed now. My house is a mess and I've no groceries in! why can't I even buy groceries! I just know that I can't drive today and wont driver.


My husband has videoed one incident as he and I now feel I have undeniable cataplexy.


I am still on low dosage of two of my meds as I just couldn't get down any further and still function.


My husband feels happy that we are now close to an answer, but what if I am told I don't have Narcolepsy/Cataplexy? This means I am a crazy woman who has somehow managed to psychologically give herself Cataplexy? This cant be the case, I decided to visit the psychiatrist and ask her am I crazy, she says no! She tells me that she has seen many patients with diseases that are less severe than mine but psychologically affect them far worse. She compliments me on my strength and tells me to keep going. This offers me some comfort.


Its now at a stage where I feel if I am told that I dont have Narcolepsy, how could my husband or family have any credibility in me?


I would be devastated to find out I had Narcolepsy, I don't want it. I just cannot get past the fact that there are two periods of my life. One I am a professional Accountant who never misses work and since the vaccine, I am now on extended sick leave. The work Physician wont take me back to work yet as I have collapsed too many times there and they are worried about law suits. Once I was in a clinc having a minor procedure on my leg after an injury. The pain was severe and I collapsed. Lets just say every muscle in my body gave way (I was lying down at the time). I was terrified and the doctor looked at my eyes and says 'she's ok.. she's ok' but I wasn't ok! I couldn't move a muscle. I tried to fight it but couldn't. My husband explained to them that I suffer these 'turns' as part of migriane disorder. They looked at me like I was a mad woman! I am sick of medical attention, I am sick of doctors being baffled and looking at me like I am mad, then they chat to me and realise I am not mad but say they are sorry I am sick.


Now my neuro says it may not be migriane after all!!!!


Did any of you feel crazy before diagnosis?


Will I have to be fully med-free before sleep tests?


All of this will be revealed on Friday at my visit, but in the meantime, I just feel so alone. My parents and friends have all had separate conversations with me where they tell me to push push for answers as I have never ever been the same since the vaccine! I told me all, surely a neuro couldn't have missed this??


Could my Neuro have missed this for so long?


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Yeah, the swine flu vaccine was rushed out the door as a knee jerk reaction to the overhyped panic of that whole ordeal. It has not been conclusively linked to N, but there's statistical data that points to it setting off an autoimmune reaction. I actually had the swine flu. And I have to say, that's when my symptoms took a turn for the worse, I had been dealing with fatigue and HH for a long time, but it was at that point I started experiencing period of cognitive impairment. Then, eventually, one day I woke up in a brain fog and it never lifted. I've been that way ever since. This was over 3 years ago. The years that should have been my youthful prime have been ruined.

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Yes. A neurologist could miss this. A neurologist missed mine also.

You are not crazy. It is not uncommon to get the response from a physician, essentially, "if I don't know what it is and you are bothered, it must be emotional/ psychiatric'.

I am glad you saw a psychiatrist.

For your sleep study and medications- some medications alter "sleep architecture" and reduce or supress REM. This will be important to know before the tests. To be diagnosed with N, you will need to experience 2 sleep onset REM periods during your 5 naps in the MSLT.

When I had my first MSLT I was on a REM supressing medication. I had no SOREM, so no Diagnosis. 6 months later, I was off that medication, repeated the MSLT, experienced 2 SOREMs and my doctor was still hesitant to diagnose. When I pushed hard to have my Cataplexy taken seriously, it was- and I received a diagnosis.

Educating yourself, as you have done, is so important. If this is what you have, your future will improve and you will have much of your life back.

Here is a lonk that may be helpful for you:

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