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Could A Nurologist Miss Narcolepsy Or Am I Just Crazy


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#1 rockingchair

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Posted 17 July 2013 - 08:44 AM

Hi,

 

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?

 



#2 cremesoda34

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Posted 17 July 2013 - 10:46 AM

Sounds like Narcolepsy to me but as I am finding out other things can cause the same like epilepsy and it's possible to have both. I can only tell you that don't ever let any doctor tell you your crazy or it's all in your head. You and only you know your body and when something is wrong. 

  I was so relieved to have at least the Narcolepsy diagnosis because it confirmed I wasn't crazy and I even cried when my neuro told me. I said I am so relieved I am not crazy and his response was your not lazy or crazy this is a disease.  Don't give up and keep going and get a second or even a third opinion if needed.  Are they doing the MSLT the following day after the poly? The MSLT is the only real way from my understanding that Narcolepsy can be diagnosed. I may be wrong but that is what I have read and heard from everyone.  Best of luck and keep us posted please. 



#3 Hank

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Posted 17 July 2013 - 11:28 AM

Narcolepsy can be diagnosed "clinically" in the presence of "clear cut cataplexy". For me, even with 2 sleep onset REM episodes during my MSLT, my sleep doc was still reluctant to make the N diagnosis. It was not until I insisted that my Cataplexy be taken seriously that she made the diagnosis. She confirmed that what I was experiencing -muscle weakness and collapse following strong emotion- was Cataplexy. And since Cataplexy is almost virtually exclusive to N, I was formally diagnosed. Once I was diagnosed, it was like the magic key that unlocked so many mysteries. My temperature quirks, hot flashes, difficulty staying awake, difficulty staying asleep. Suddenly, all these quirky complaints that had been minimized or ignored were seen as part of my diagnosis. It was an amazing relief to be taken seriously for the first time. I have found that being taken "seriously" is ongoing and something I need to get good at communicating.

This is not a fatal disease- but it has a huge impact on quality of life and needs to be treated accordingly.

#4 Ferret

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Posted 17 July 2013 - 10:21 PM

YOU are NOT crazy!
Take the video with you to your appointment AND take your husband with you as a witness to your cataplexy.

Sorry response is so short...laptop died...using hubbys iPad...like milking a mouse

#5 rockingchair

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Posted 20 July 2013 - 11:35 AM

So I went and saw the Sleep Doctor. I talked to her and discussed everything for two hours. I expected her to say 'hmmm lets see, we'll run tests etc.' We discussed the 'Cataplexy' and she looked at me and said. 'It is very clear to me that you have Narcolepsy with Cataplexy, there is absolutely no doubt in my mind' I had a rush of shock/fear and without my control, my head, neck and shoulders fell down. I couldn't speak or move for a little while. She explained that that was clearly Cataplexy, she explained that most GP's and Neuros may never see a case and might miss it, but that the H1N1 Narcolepsy in adults follows a totally different path to non H1N1 Narcolepsy and is being missed and she can say without hesitation that it is what I have.

 

I have to wean off my current meds and do a sleep test. She then will start me on new meds and anticipates that there will be a better quality of life for me.

 

I am devastated, relieved, curious and angry all at once. How could Neuros, Cardiologists, Consultants etc. miss this yet I had to research and push for this myself? I don't mind so much that they didn't instantly recognize it, but how did I spend a week in hospital and still go home with no answers and the doctors gave up looking. I spent so long with no resolution that it is strange to sit and talk to someone who can put a name to it. 

 

Thanks for your comments and advise and apologies for accidentally posting the original post three times.



#6 Ferret

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Posted 20 July 2013 - 11:53 AM

Take a deep breath...you have struck gold with your choice of Doctor.
So many people go for years and years without a proper diagnosis. Now start doing a different kind of research...it's not just about magic meds that will make your life better (or worse)...research diet, lifestyle changes, exercise...the whole enchilada..to improve your health and your quality of life. Be strong...I know you can do this!

#7 rockingchair

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Posted 20 July 2013 - 12:11 PM

Thank you so much. I intend to take a whole life approach to this, like you say with diet, lifestyle, exercise. I've the drive to do it now, i know what I have and I know I can make a difference. I realize how lucky I am with the doctor, she told me she is 30 years sitting across the table from Narcolepsy patients all over the world and recognizes it when she sees it. She has also had special training in the Pandemrix Narcolepsy and is the state's nominated expert on the subject and has personally met and diagnosed each person affected with Narcolepsy by the vaccine. I've met my fair share of duds over the years with one particularly arrogant consultant giving me a Vallium and coming back to me an hour later and saying 'All better?' when I replied NO, he told me how I am causing myself harm by panicking and suffering anxiety about my 'migraines'. He told me he was going to write to my Neuro and GP explaining his opinion on the matter.

 

I am considering (When I receive my official diagnosis), writing to this doctor and explaining where he went wrong. Failing to recognize is is not where he went wrong, but I feel he let me and himself down by instantly writing it off just because he couldn't explain it at that time. He made me question my sanity. He humiliated me and made me afraid to approach new doctors. He made me question myself and my sanity. What bothered me most was his 'threat' to pass his opinion on to other doctors, making his mud stick!! arghhh. Must let go of the anger!! I think I will write to him.

 

The doctor I met yesterday was his complete opposite thankfully.



#8 jennel

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Posted 20 July 2013 - 01:19 PM

RockingChair - I know your pain and I know your frustration. I have spent twenty years looking for answers and getting small answers along the way and only last month the narcolepsy diagnosis. I've lost jobs and friends over the years and had times of such pain and misery I just wanted to curl up and die. I know all too well how the ER will simply release you while you are still in earth-shattering pain and illness. If you're not dying on the table they don't know what to do with you.

 

There can be a lot of emotions to sort through and it's really easy to get mad at stupid dr's!! Lol. But in the end. I don't know how much profit there is - not that I don't think we don't need to work through it for our own mental sanity. One of the greatest things my sleep dr said to me was - "It's NOT in your head."

 

Sweeter words have rarely been spoken. And...get this - I've BEEN seeing a renown sleep specialist for FIVE years!!!! A different one than made my narcolepsy diagnosis. It was only when my regular dr's phone lines got whacked out and seven of the ten lines went down and I couldn't REACH him that in a move of desperation I  reached out to this new dr. My old dr had me on SIX stimulants a day and NEVER questioned why I was so tired!

 

I've actually lost count of my sleep studies. At least six before this diagnosis. I've seen neurologists too - gone to Cleveland Clinic had dozens of tests and thousands and thousands of dollars of bills..Praise God for your diagnosis and a path of treatment that will slowly become clearer and clearer.

 

Getting a diagnosis is so huge and I'm so happy for you in that sense! I also - like most people I think - had that same mixed emotions response. We hate to have this chronic condition but with the diagnosis at least now we know where to begin!! I wish you all the best and together I know we can carve out the best lives possible for ourselves! :)



#9 jennel

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Posted 20 July 2013 - 01:24 PM

Oh and as far as that a** of a dr- my mom went to dr's for years and she too met a dr who said "You just need to get out and have a good time."

 

She stopped the dr's but eventually through a long series of events my father began to force her to go and another a** of a dr walks in and says, "How could you NOT know you have MS? With this combination of symptoms it's obvious." 

 

Some of these dudes so lack in compassion and care it's disgusting. BUT it sure does make us grateful for the GOOD ones! ;)



#10 rockingchair

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Posted 20 July 2013 - 04:43 PM

Thanks for all the comments and insight. My goodness! Narcolepsy diagnosis is a test of strength for many people. I never knew this before. I am also shocked at the difficulty many people have in the US at obtaining their medication. It is shocking to me that sick people have to fight insurance companies for meds.