2 replies to this topic

[Swifty]

Hello, all. This is my first post. I just found this site yesterday while I was searching for a doctor. This is an awesome site with useful info. It's also nice to hear stories from other people with the same issues. Since this is my first post I'll give a brief background...

I'm 27 yrs old and active duty military (shocker, i know - took a lot of fighting to stay in) and i have Narcolepsy with EDS. I never knew I had N, I just thought I was tired all the time. I lived off energy drinks/caffine but I kept getting in trouble for falling asleep at work. I would fall asleep everywhere...even when there were a ton of tanks rolling by or jets taking off right next to me. I just couldn't stay awake for the life of me. For the first 4 years of my career everyone thought I was either lazy or stayed out partying all night. Well, after being in for 4 years one of my bosses was starting to get annoyed from always catching me sleeping at work so after he chewed me out he said I needed to go to the doctor. After about 10 sleep test (which i HATE) and 4 different doctors/specialist, I was diagnosed with Narcolepsy. I was first prescribed Provigil but after about 1 year it started loosing its effects and causing headaches. Now i'm on 25mg & 10mg of Adderal and caffine/energy drinks. I've noticed that the adderall is no longer working and i continue to fight fatigue throughout the day but worried about the effects of a higher dosage.

Now i just moved to WA state from the east coast and need to find a new doctor. Thankfully Uncle Sam pays for my medical or i'd be screwed. They gave me a choice of doctors but said i could find a different one if I like. Most of the doctors are Pulmonologist. I've always seen Neurologist in the past. My question is, how do i find a reputable sleep specialist in my area? I have several concerns that i want to speak with a doctor about that actually knows what he is talking about and not guessing or blowing me off.

[Hank]

I overhauled my medical care one year ago and finally got everything straight. I hope this will be helpful. There is a difference between Board Certified in Sleep Medicine and Fellowship Trained in Sleep Medicine. Almost any medical specialty can study and take a test for Board Certification in sleep. The ENT who sent me for my first sleep test was Board Certified but did not know he was seeing N, since it is uncommon.
Fellowship training is a full 1-2 years of specialized training after residency.
I chose a Sleep Medicine Specialist- residency in Neurology, fellowship in Sleep Medicine. She has treated many PWN- unlike others who may just know about it while they focus on Sleep Apnea, for example. Choosing the right sleep lab is also important. I chose the doc first and went where she referred. I found some of this misleading- but surprisingly few physicians actually knew what to do with me - and did it anyway- and wasted years with wrong diagnoses. I decided to make a few well informed decisions and hand pick the most qualified. I am thankful for the results. All the best to you and thank you for your service.

[doctahjay]

Hello, all. This is my first post. I just found this site yesterday while I was searching for a doctor. This is an awesome site with useful info. It's also nice to hear stories from other people with the same issues. Since this is my first post I'll give a brief background...

I'm 27 yrs old and active duty military (shocker, i know - took a lot of fighting to stay in) and i have Narcolepsy with EDS. I never knew I had N, I just thought I was tired all the time. I lived off energy drinks/caffine but I kept getting in trouble for falling asleep at work. I would fall asleep everywhere...even when there were a ton of tanks rolling by or jets taking off right next to me. I just couldn't stay awake for the life of me. For the first 4 years of my career everyone thought I was either lazy or stayed out partying all night. Well, after being in for 4 years one of my bosses was starting to get annoyed from always catching me sleeping at work so after he chewed me out he said I needed to go to the doctor. After about 10 sleep test (which i HATE) and 4 different doctors/specialist, I was diagnosed with Narcolepsy. I was first prescribed Provigil but after about 1 year it started loosing its effects and causing headaches. Now i'm on 25mg & 10mg of Adderal and caffine/energy drinks. I've noticed that the adderall is no longer working and i continue to fight fatigue throughout the day but worried about the effects of a higher dosage.

Now i just moved to WA state from the east coast and need to find a new doctor. Thankfully Uncle Sam pays for my medical or i'd be screwed. They gave me a choice of doctors but said i could find a different one if I like. Most of the doctors are Pulmonologist. I've always seen Neurologist in the past. My question is, how do i find a reputable sleep specialist in my area? I have several concerns that i want to speak with a doctor about that actually knows what he is talking about and not guessing or blowing me off.

It is SO important to have a doc that actually understands N, or else you spend more time arguing and trying to explain yourself than you do actually working towards a healthier treatment plan.
Here is my rule when picking a physician:
1. If you hate him/her, GET ANOTHER ONE!
Haha this sounds really simple, but so many people just think doctors are arrogant, but knowledgeable, so they stick with them, anyway. FALSE! Having a doctor you truly respect can make all the difference, so do not be afraid to experiment with different people.
Sleep specialists are obviously a great choice. Many of them complete a residency in Neurology or Internal Medicine. Before you meet with a physician, especially a pulmonologist, call the office and ask if he/she is familiar with treating N. This will save you a lot of time, and they will most likely be honest with you. N is definitely not a pulmonary specialty (or at least it doesn't make sense for it to be.... they would be better at treating sleep apnea, which we know is NOT the same thing).

One other suggestion that you may want to try. And it's a hard one. A really hard one. What do you think about giving up caffeine? Haha, if someone said that to me 5 months ago, I probably would have decked them! I think caffeine can actually exacerbate some symptoms. Last year, I was LIVING on Red Bull and the blue ROCKSTAR! Omg, just thinking about it makes me crave one :-). But, I really wanted to try to turn it around and decrease my symptoms as much as possible. I began to stick to a better sleep schedule and I gave up caffeine. It made a HUGE difference. For me, I think my meds work better when I do NOT drink energy drinks. My alertness seems to last longer. Occasionally, I have a diet coke, but I haven't had an energy drink in 5 months! It's like AA for narcoleptics. :-) 5 months sober, and it's hard every day!!!!