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I'm Not Just Sleepy, I'm "panic Tired"


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#1 phreadriquebean

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Posted 10 June 2013 - 09:16 PM

I haven't been on the boards in a long time, but I am in a bit of a mess and needing some support.  *sigh*

 

I have no insurance and for the last 18 months or so, I have been seeing doctors at a free clinic.  The first doc I saw (regularly) just continued the same meds that my previous doc had me on with one exception:  I switched from Dexedrine to Concerta because I could get the Concerta at a reduced cost through the Johnson & Johnson prescription assistance program.  I did this for a little over a year and the Concerta just didn't help a whole lot so I planned to ask my doc to switch me back at my next appointment, but she left the practice and I saw a new doctor at my last appointment.

 

The new doctor looked over my med list and said I was on a very dangerous combination of drugs and he wouldn't be prescribing me anything for the narcolepsy at all and I would need to see a specialist.  He also implied that I was drug seeking and made me explain all of my symptoms/justify all my meds...  I suspect this has something to do with having periodically been prescribed narcotics for random injuries and pain conditions.  Most recently last October...  I think I got through to him and maybe convinced him I wasn't drug seeking when I completely broke down crying and said I would gladly see any specialist he wanted if I had the money to do it and I just wanted to be semi-functional again.

 

So, at this point, I have no concerta, no dexedrine, no nothing while I wait for them to find a sleep specialist that will see me for next to nothing.  It's been about two weeks and I can only describe the difference between being tired while medicated versus tired with nothing, is panic!  I feel like I'm going to have an anxiety attack or start crying if I don't go back to sleep.  I have a feeling that the doc would tell me I'm panicking because I'm addicted to controlled substances or something, but I remember this panic from before being medicated.

 

Can anyone else relate to the panic sensation of being "narcoleptic tired?"  Any other ways you might describe it?  Any advice for how to deal with this doc?  I have several medical conditions that have kept me from working so I'm sort of at the mercy of this clinic, although, not necessarily this doc.

 

Thanks in advance!

 

- Phread



#2 Hank

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Posted 10 June 2013 - 09:28 PM

Your doctor can request a "consult" with a specialist- that is done all the time. Essentially, your doctor can just call the specialist's office and get advice on how to treat you.

That will save you the time of waiting for a new appointment and minimize your expenses.

You already have a diagnosis, you just need a prescription. I would recommend an assertive stance with the "drug seeker" stuff. I have been through that myself and it is humiliating and counter productive.

I hope you get some good suggestions and the answers you need.

#3 iturnedintoamartian

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Posted 10 June 2013 - 11:29 PM

The only thing that has helped me get through to those that care and to help them understand the breadth of the situation was to tell them some of the worst situations, the most dangerous, I have been put in due to my sleepiness. Sometimes that helps people understand that it's not just one of those tireds that you can pinch yourself out of.
What I think really forced my mother to believe me, who, along with the rest of my family, saw me as a hypochondriac, were these things: while driving for my former job delivering newspapers (terrible, terrible idea), I could almost get in an accident due to dozing off and, unlike most people that would be wide awake after coming so close to death, I would be slightly lively for maybe a minute then back to the nodding. You know, those exceptional times where a punch to the face couldn't even make you open your eyes all the way. Explaining that along with the experience of not remembering the drive home some nights, jumping into alertness and having to remember where I was, where I go next. Explaining that I am literally lucky to be alive. That's what made a believer out of her.
I think sometimes GPs don't understand the severity and danger of a normally medicated narcoleptic going without (or any narcoleptic, for that matter). You know, I think some GPs don't understand narcolepsy at all. If they did, I don't think as many of us would be so frustrated over how long it took, how many doctors it took, to be diagnosed. Maybe your doctor needs to be treated like my mother. Give them the Hell part of narcolepsy- the one that, if you're like me, is frightening to really stew on.

#4 DeathRabbit

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Posted 11 June 2013 - 11:34 AM

I sometimes panic when I have a symptom flare up at my job because I feel like a failure. And lets be honest, I pretty much am. I was a magna cum laude pseudo-genius in computer enigneering. Now simple coding tasks are impossible for me on bad days. I'm in a pretty major depression cycle right now. I wake up every morning and I'm like dammit, why didn't I die in my sleep?



#5 2Tired4This

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Posted 12 June 2013 - 11:36 AM

^^^^ I know that's not funny, but I still laughed. 

 

Back to OP, I can somewhat relate to how you feel. I think it's possible that your brain perceives EDS symptoms differently than most of us for whatever reason. When I feel tired it's kind of a panicky feeling, but I would best describe it as a pent-up-tension and dull-ache kind of feeling in my upper body. 



#6 phreadriquebean

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Posted 14 July 2013 - 08:35 PM

Thanks for the support guys!  I have an appointment with a pulmonologist tomorrow!  That was faster than I thought!  I have no idea what his or her history is with Narcolepsy, though, and I'm pretty sure that they don't have my records since it's a different building and I don't have a copy of my diagnosis from back when...  So, I imagine this will be a rather unproductive "prove your dx" sort of visit.  I do have some stories to tell, though.  I fell asleep at my sister's wedding three weeks ago...  I knew it was coming and excused myself thinking I would take a short nap and hopefully feel a little better.  Apparently I shut off my alarm and I woke up about 90 minutes later...  I had missed the cake.  :(  Thankfully, my sister lived with me during the time I was being diagnosed and knew how it could be so she wasn't offended.  I still felt bad, though...  

 

Wish me luck!



#7 DeathRabbit

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Posted 15 July 2013 - 05:56 AM

Be wary of pulmonologists. Some of them have taken time to read up on N, but it's not in within their concentration. Many pulmonologists cross over into sleep medicine just so they can make extra money pushing CPAPs. My first sleep doc was that way. The first clue I picked up on was that he had a nurse working for him that has had N for 11 years and never found any treatment that helped her in the slightest. What kind of sleep doctor can't even help his own staff??? Secondly, when I asked about Xyrem, he said, "No you don't want that; it's a depressant and will make you more sleepy. I was floored by the ignorance shown in that statement. Apparently I knew way more about N then he did. So I left and got a sleep doc with a background in psychiatry. Though I'm no longer seeing him at this time (I've run the gamut of all N treatments, so I'm focusing more on symptom management), he was much more helpful and knew everything I knew about N and then some.



#8 phreadriquebean

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Posted 15 July 2013 - 02:19 PM

I was certainly wary and knew about the whole "pulmonology/sleep medicine connection" but thanks for the heads up.  It may prove useful to someone else who reads this.

 

Thankfully, I had no reason to be concerned, though I gained some additional frustrations.  The pulmonologist I saw today was very nice, knew why I was there, addressed the issues as she saw them and said, in a nutshell, "unless your asthma or some other breathing problem is the cause of your sleep issues, which it doesn't seem to be, I'm not the doctor for you!  I don't have any specialization in sleep medicine, but I can and will refer you on to the sleep clinic for further evaluation.  It seems like you have a complex set of medical issues (and I do) that will be best handled by a sleep doctor.  It looks like there may be some symptom overlap and possibly even newer treatments you haven't tried.  A sleep specialist should be able to get you on a good medication regimen to better manage your symptoms.  I'll fax over the referral today!"

 

So, on the plus side, she seemed to understand that I wasn't faking or drug seeking but she clearly felt they had sent me to the wrong doctor for my issues.  I'm super grateful that she wasn't one of those pulmonologists who specialized in sleep medicine and gave me the run around, but now I have to deal with the waiting for an appointment, insurance issues, and other worries all over again.  And, of course, I'm still not going to be treated for my Narcolepsy until I see the right specialist.  Hopefully the sleep medicine doc (when I get to see him/her) is as understanding, sympathetic, and helpful!