I don't know what to do and just need to talk about it.

[MeaganS]

As you may know, my dh is a third year medical student. For the last two years or so, he has been complaining of being tired. At first, we just brushed it off, but in the last 6 mo or so, it has gotten very bad. He has been falling asleep during his rotations (literally while standing up) and isn't currently safe to drive for more than 10 minutes or so. Well, yesterday he was just diagnosed with narcolepsy after a sleep study. He doesn't have cataplexy (the stereotypical narcolepsy trait), but it is still pretty bad.

 

As a third year med student who starts applying for residencies in 4 months, our biggest concerns are about what this means for his career. There is no cure for narcolepsy and from all accounts, he is just going to have to be exhausted for the rest of his life, using stimulants to keep himself awake. To top it all off, he wants to be a surgeon, which seems like an impossible option now, and he is feeling very low about it all.

 

We don't know what to do. We are heavily invested in his education with both time and money and I have no idea where we should go from here. I am a researcher and fixer by nature who always faces things with a very matter of fact attitude, but I don't have any idea what do do about this and it scares me. I just wish someone could tell us what to do, but they can't and I feel lost.

 

I don't really know what I want by posting this other than to just put it out there and know that someone other than us has an idea about what is going on. Thanks for reading, and if you are a praying person, please say a prayer for my dh.

[NorthwestMom]

:grouphug: :grouphug: :grouphug:

 

I think before making any decisions, you and your DH need to connect with others with narcolepsy and see how they manage their life, what options might be available to you, etc. My understanding is that this disease, especially without cataplexy, is manageable with medications.

 

:grouphug: :grouphug: :grouphug:

[Ottakee]

I agree with seeking out a support group for people with the same thing (online can be helpful) and maybe seeing a specialist for further information. Did they also do a complete physical with blood work, etc. to rule out any other underlying issues?

[mommymilkies]

I am sorry. My suggestion would be for him to look into becoming a radiologist. The hours may be better for him. I used to work with a lot of doctors in various departments, and that would be my best guess for a job that long term would work out better with a condition like narcolepsy. That, or teaching. I wish I could help more!

[kiwik]

:grouphug: :grouphug: :grouphug:

 

I think before making any decisions, you and your DH need to connect with others with narcolepsy and see how they manage their life, what options might be available to you, etc. My understanding is that this disease, especially without cataplexy, is manageable with medications.

 

:grouphug: :grouphug: :grouphug:

 

 

That is the only advice that makes sense. Talk to as many people with narcolepsy as you can. Also unless the person who diagnosed your dh is a renowned expert in the field of narcolepsy find a renowned expert and get a second opinion.

 

Then I guess it is one day at a time. Pretty sucky though. Hugs.

[Seasider]

I absolutely agree with the above response - do your best to seek out those in the medical profession who are narcoleptics. I'm thinking that the doc that diagnosed this might be able to put you in touch with some organized support groups.

 

I understand what a blow this is to your dh. ((Hugs)). But knowledge will empower you to make good decisions. What a blessing that you are a researcher by nature.

[Tammyla]

Oh, I wish I had some answers or a direction to point you in, but I can pray for the two of you.

[speedmom4]

Maybe he could go into neurology to really understand his own condition and then be able to help others? I can imagine this is a very scary time right now.

 

Hugs and prayers coming your way!

 

Elise in NC

[MeaganS]

I agree with seeking out a support group for people with the same thing (online can be helpful) and maybe seeing a specialist for further information. Did they also do a complete physical with blood work, etc. to rule out any other underlying issues?

 

Yes, they did all the bloodwork and the two sleep studies, so it is pretty definite. We were hoping it was just sleep apnea or something, although we knew narcolepsy was an option. Because we just found out yesterday, dh hasn't even been able to talk to his doctor about what all this means. We are also going to talk to the dean of the med school in hopes of learning more about what it means for his career. Can narcoleptics even get malpractice insurance? This is the kind of thing we don't know yet, and hopefully time will give us some more clarity.

[MeaganS]

Thanks for all the hugs so far. It does mean a lot to me that so many strangers care.

[gardenmom5]

I'm sorry - that would be very stressful. My suggestion is to pursue alternative treatments, either from pioneers in the field or even alternative medicine. (I would talk to a naturopath before throwing in the towel.) Maybe he's supposed to go into sleep disorders . . . . (I'm trying to think of how to make lemon aide.)

[lavender's green]

:grouphug:

 

This sounds like a really stressful situation to be in. I agree with all the PPs about finding support groups, figuring out options, etc.

 

You could maybe look into experimental treatments and cures. I don't want to be the lady who gives kooky advice, but my husband's cousin says she cured her narcolepsy by going gluten-free. Maybe you could search the literature and see if a link between them has been noted. (Again, I'm not trying to be the lady who gives crazy medical advice, and if I'm being out of line you can say so. I'm really not a gluten-cures-all person.)

[Liz CA]

I am on the encourager side. Consult more physicians, also naturopaths.

While I know nothing about the condition itself, do what comes easy to you and research, then present him with the findings - and hopefully there are some positive aspects.

 

I also second the suggestions of finding others with this disorder to glean from their cumulative experiences. As a doctor, your dh will be in a better position to weed through the sometimes overwhelming amount of medical info.

[Jean in Newcastle]

I would want to find out why the narcolepsy. Is it autoimmune? (Which is a cause in some cases). Is it related to his adrenals? (Which after the stress of med. school and residency could certainly be possible). I fell asleep in the middle of a party just last weekend. I take adrenal supplements which help a lot. I'm not saying that my troubles mirror your dh's but I have always pursued the "whys" of medical conditions. Most naturopathic doctors look for and treat causes instead of just treating the symptoms. Which is not to say that all naturopathic doctors would know how to treat narcolepsy. But I would want to explore that at least.

[Pippen]

I wouldn't be making potentially life changing decisions without seeking a second opinion from a highly regarded specialist/clinic. There is no room for misdiagnosis in this scenario, both for your son as well as potential future patients.

[itsheresomewhere]

:grouphug:

 

This sounds like a really stressful situation to be in. I agree with all the PPs about finding support groups, figuring out options, etc.

 

You could maybe look into experimental treatments and cures. I don't want to be the lady who gives kooky advice, but my husband's cousin says she cured her narcolepsy by going gluten-free. Maybe you could search the literature and see if a link between them has been noted. (Again, I'm not trying to be the lady who gives crazy medical advice, and if I'm being out of line you can say so. I'm really not a gluten-cures-all person.)

 

 

 

 

There is/was a study going on this. It was a gluten free, dairy free diet that help some with certain types. I kn

[itsheresomewhere]

:grouphug:

 

This sounds like a really stressful situation to be in. I agree with all the PPs about finding support groups, figuring out options, etc.

 

You could maybe look into experimental treatments and cures. I don't want to be the lady who gives kooky advice, but my husband's cousin says she cured her narcolepsy by going gluten-free. Maybe you could search the literature and see if a link between them has been noted. (Again, I'm not trying to be the lady who gives crazy medical advice, and if I'm being out of line you can say so. I'm really not a gluten-cures-all person.)

 

 

 

 

There is/was a study going on this. It was a gluten free, dairy free diet that help some with certain types.

[stripe]

I think you should not freak out, but stay calm and figure out the options and get lots of opinions both for his own health and for career advice. There are medical careers for doctors that don't involve surgery or even seeing patients, and so he shouldn't have to chuck it all and change careers. Most jobs involve being awake, so I think you just need to better understand the condition and the treatment and see, but I can't imagine that he'd just be told to give up everything and stay home. It must be very difficult, but you are headed in the right direction by getting answers.

[MommaOfalotta]

Im sorry :( No advice but I will be praying for you both.

[Desert Rat]

I'm so sorry. That news just stinks! Hugs to you and your dh.

[Starr]

:grouphug: and prayer for you and your dh. It is so difficult considering changes in life plans. On the other hand being in medical school will give him access to the right doctors and doctors who know doctors. You have some time to sort out the options and check into all the info about insurance.

[swellmomma]

If this is a new development I would get a second opinion. I was dealing with a similiar issue with sleep, and in my case it turned out to be adrenal fatigue. I still get hit with the exhaustion but am safe on the roads now and such. It would seem odd to me to go my whole life without problems, deal with being tired for 2 years and then suddenly be Dx with narcolepsy. It seems to be the narcolepsy is a syptom not the disease. Which means his goals to become a surgeon don't need to be gone, It just may take some more time as he heals his adrenals and gets his body back in sync. Easier said then done when residencies don't exactly lend well to rest and relaxation. This last year of healing my own adrenals has meant I had to stop working, and high levels of stress set me back a lot. It looks like I will be healed enough to start working again in the fall but I still have a long way to go to be 100% again.

 

I am sorry he is having to deal with this. And since he is the med student and I am just me I am likely not knowing what I am talking about, but the adrenals is the first thing that came to me when I read your OP.

[Remudamom]

I'm sorry. My brother is a surgeon and had some hand tremors that appeared suddenly and was worried that he wouldn't be able to do surgery. It came and went and nothing for more than 20 years and counting. I pray that this will be resolved for you and your dh.

[Catwoman]

I wouldn't say a word to the dean of the med school until your dh has had the diagnosis confirmed by the very best narcolepsy specialist you can find -- this is a time when a second (or even a third) opinion is absolutely crucial.

 

Seriously.

 

Don't potentially jeopardize your dh's future until you are 1000% sure about his diagnosis, and until you know exactly what treatments are available.

 

There is absolutely no reason to rush to tell the world about this. Take your time, get your information, take the time to process it and make plans, and then start thinking about telling others.

 

I'll pray for him. :grouphug:

[ktgrok]

I wouldn't say a word to the dean of the med school until your dh has had the diagnosis confirmed by the very best narcolepsy specialist you can find -- this is a time when a second (or even a third) opinion is absolutely crucial.

 

Seriously.

 

Don't potentially jeopardize your dh's future until you are 1000% sure about his diagnosis, and until you know exactly what treatments are available.

 

There is absolutely no reason to rush to tell the world about this. Take your time, get your information, take the time to process it and make plans, and then start thinking about telling others.

 

I'll pray for him. :grouphug:

:iagree:

[AimeeM]

I'm sure you've probably already answered this, but are they sure it's narcolepsy and not just sheer exhaustion?

My husband, when I mentioned this, told me that a friend of his (a surgeon), had "narcolepsy" while in med school. Apparently it wasn't super uncommon, during the more intense med school years, for the students to be so exhausted all the time that they would just doze - standing up during rounds or a sitting during a game of poker. Presented almost exactly like narcolepsy, but turned out to just be exhaustion.

 

Hugs. I'm sure this isn't easy.

[AimeeM]

double post

[tex-bex]

I would definitely go the route of dietary changes and investigating adrenal fatigue. It really can do SO much!

[Harriet Vane]

Do NOT tell the dean or anyone at the school about the diagnosis. Research this privately until you are sure you know the options. Also get a second opinion from a big-deal specialist, even if you have to travel for it. It's well worth the money to have a thorough consult with the best of the best--this affects his career and the rest of his life.

[ErinE]

I wouldn't say a word to the dean of the med school until your dh has had the diagnosis confirmed by the very best narcolepsy specialist you can find -- this is a time when a second (or even a third) opinion is absolutely crucial.

 

Seriously.

 

Don't potentially jeopardize your dh's future until you are 1000% sure about his diagnosis, and until you know exactly what treatments are available.

 

There is absolutely no reason to rush to tell the world about this. Take your time, get your information, take the time to process it and make plans, and then start thinking about telling others.

 

I'll pray for him. :grouphug:

 

Agreed with Catwoman. He shouldn't jeopardize his career options until he's had multiple confirmations and consults. As your dh probably well knows, an initial diagnosis can be wrong. Praying for your family.

[dangermom]

Oh, Meagan. :grouphug: I'm so sorry you're going through this. I agree with the others not to tell the Dean for a while; that can wait while you get things straightened out. I'm betting that there are branches of medicine that your husband can move into that will have easier schedules--radiology is a good suggestion. A guy in our ward is a radiologist and he has a good schedule (he got into it because he developed a condition that makes it hard for him to stand for long). There will be others!

[Melissa in Australia]

just hugs

:grouphug:

[Anne in CA]

Praying for your dh and yourself.

[Pippen]

I wouldn't say a word to the dean of the med school until your dh has had the diagnosis confirmed by the very best narcolepsy specialist you can find -- this is a time when a second (or even a third) opinion is absolutely crucial.

 

Seriously.

 

Don't potentially jeopardize your dh's future until you are 1000% sure about his diagnosis, and until you know exactly what treatments are available.

 

There is absolutely no reason to rush to tell the world about this. Take your time, get your information, take the time to process it and make plans, and then start thinking about telling others.

 

I'll pray for him. :grouphug:

 

 

And by very best narcolespy specialist you can find, be willing to travel, if needed. It's common to want to go with local specialists who are covered by your insurance, but this is one of those times it's worth casting the net further.

[Miss Mousie]

No advice, just hugs. I know it's a scary time. I hope you get some answers soon.

[Miss Marple]

I'm so sorry! But I'm also so glad that you have gotten a diagnosis that isn't life threatening. My dh is a surgeon; he did his residency back in the 80's when residencies were much less humane than today (typically 80-100 hour weeks). I don't think you dh could have made it back then, but with the new rules/regulations in place, he might today. However, if it were me (or mine) I would recommend an alternate field. There are so many other options out there in medicine (dermatology or ophthamology come to mind as not being overly stressful). It's good that you know about this before residency match so at least his education to this point is all pertinent whereas if he were diagnosed during a surgical residency, his training would probably be prolonged due to a switch.

[Cinder]

No advice, just :grouphug: .

 

Someone mentioned fatigue and it reminded me of my college roommate's early memories of her dad, during his residency, coming home, sitting down to dinner, and falling asleep before he could take even one bite. He did go on to become a surgeon.

 

I hope you're able to find some good answers and support to help you decide on the next step to take for your family. :grouphug:

[Impish]

No advice, just :grouphug: :grouphug: :grouphug:

[Catherine]

I agree with others that making big decisions right now doesn't make sense, until he has at least a second opinion and has had a chance to do a trial of some intervention, to see how he responds. I am a doc. In my immediate circle, I know and doc and an NP who have narcolepsy-it's not terribly uncommon. Both work full time and have had successful careers. Don't rule anything out yet.

 

And I differ with the advice to consider radiology. Sitting down all day in a dark room is the last thing a narcoleptic needs. Activity will help him to stay awake and function better. Time is short, because he'll be applying to programs in the fall, so it's imperative that he get connected with an online message board (there MUST be one) and gets more info ASAP. But I'm here mostly to register my agreement that he shouldn't jump to negative conclusions, yet.

[elfgivas]

i am not a doctor.

 

but having just gone thru two surgeries, neither of which turned out to be what they were all certain we were dealing with, i'd proceed with vigor and research.

 

ie. they may be absolutely right, and likely are. but then there are those outliers....

 

for example, in the late seventies, there was a virus that many university students got that mimicked narcolepsy. i vividly remember leaving to go to class and waking up several hours later in window well where i had just paused to rest. it lasted for the better part of a year, and was super hard to diagnose. much as i wouldn't wish that on anyone, it does go away, and you do feel fine afterwards.

 

i am finding michael j. fox's approach to parkinsons to be particularly inspiring right now. he manages to focus on what is possible, not on what is not..... but shut his family out of his struggles for the first few years, too.

 

:grouphug: sharing life with someone with a chronic illness is tough :grouphug:

ann

[maize]

No advice, I will keep you in my prayers. I do know several people who have narcolepsy, including one who is a medical doctor. I'm not sure if it developed before he was through residency though--I know that can be brutal.

[MeaganS]

Thanks for all the advice and caring and hugs. We are still a little overwhelmed, but we are taking a little time to figure it all out and for him to take a close look at what he is capable of. Thanks for listening. This forum is the best. :)

[Wildcat]

I am on the encourager side. Consult more physicians, also naturopaths.

While I know nothing about the condition itself, do what comes easy to you and research, then present him with the findings - and hopefully there are some positive aspects.

 

I also second the suggestions of finding others with this disorder to glean from their cumulative experiences. As a doctor, your dh will be in a better position to weed through the sometimes overwhelming amount of medical info.

 

:iagree: with this.

 

I also don't know aything about the condition, but when I'm faced with something 'unknown', I ressearch. Information helps things appear less scary to me so that I can more clearly see a path.

 

:grouphug:

[TechWife]

Because we just found out yesterday, dh hasn't even been able to talk to his doctor about what all this means. We are also going to talk to the dean of the med school in hopes of learning more about what it means for his career.

 

 

I respectfully suggest that you put off the discussion with the dean as long as possible. Based upon what you learn, it may not even be necessary. The dean is not your husband's physician & not bound by confidentiality rules regarding him, as far as I know. The dean has the power to expel your husband from medical school. In addition, it could affect his residency match. I am not suggesting that your husband be deceitful, just that he be cautious in divulging personal medical information. There may very well be a time that he needs to divulge this information, but before your husband is fully educated on his condition and a course of treatment is probably not the time. His personal physician is the best resource for this information, not the dean of the school. His physician will also be able to give him information about professional organizations that may have the information re: the impact on his career.

 

Once he becomes more educated, your husband also needs to do some personal thinking & decision making about his level of comfort treating patients. If he causes the injury or death of one of his patients, the school loans and time he spent in school won't have much value at all. There are other careers that he can look into as well - just because he's in medical school doesn't mean he is locked in to that particular career path.

[kiwik]

I wouldn't say a word to the dean of the med school until your dh has had the diagnosis confirmed by the very best narcolepsy specialist you can find -- this is a time when a second (or even a third) opinion is absolutely crucial.

 

Seriously.

 

Don't potentially jeopardize your dh's future until you are 1000% sure about his diagnosis, and until you know exactly what treatments are available.

 

There is absolutely no reason to rush to tell the world about this. Take your time, get your information, take the time to process it and make plans, and then start thinking about telling others.

 

I'll pray for him. :grouphug:

 

 

Yeah unless there is a danger to others at the moment keep quiet until you have finished your research and investigations.

[Pippen]

I respectfully suggest that you put off the discussion with the dean as long as possible. Based upon what you learn, it may not even be necessary. The dean is not your husband's physician & not bound by confidentiality rules regarding him, as far as I know. The dean has the power to expel your husband from medical school. In addition, it could affect his residency match. I am not suggesting that your husband be deceitful, just that he be cautious in divulging personal medical information.

 

 

I know a nurse who mentioned her depression diagnosis to her nursing supervisor. Two weeks later her job was "eliminated." She was lulled into thinking that because she was in the medical profession the supervisor would be sympathetic. She won't be dropping the words again in a work setting.

[kroe1]

If his narcolepsy began when he started doing rotations and staying up all night, then I would be less worried. Being able to do shift work and stay up all night is exhausting. I remember several residents falling asleep at the wheel after 76 hour shifts. Grand rounds also left many of us asleep while standing up. It just takes a couple of years to acclimate to the erratic sleep cycles. What matters is if he is staying awake when it really matters. I do remember one of my colleagues fell asleep while interviewing a patient. Obviously, this is very bad. But one of the reasons why residencies were initially so grueling was to help train the physical body as well as the mind.

 

If your DH wants to be a surgeon, then keep going. He can always drink a little caffeine before a case or pack himself in ice if he needs to stay awake.

 

 

[PollyOR]

I don't really know what I want by posting this other than to just put it out there and know that someone other than us has an idea about what is going on. Thanks for reading, and if you are a praying person, please say a prayer for my dh.

 

 

Thought of you and your family today. :grouphug:

[MeaganS]

Thank you all. Dh was able to see his doctor a few weeks earlier than we thought because there was a cancellation. After lots of research and soul searching on his part, he has decided to stay with surgery. His doctor thinks he can do it, especially since dh made the decision to be a surgeon while he was experiencing his worst symptoms unmedicated. He thinks that dh shouldn't have any problem once he's medicated. Well, it definitely won't be easy for him, but it is what he wants to do and we both think that he will be able to do it.

 

When dh and I got married, dh was going to be a business man. Both of our fathers are successful businessmen and it is what we both knew. After doing some very prestigious business internships that he hated, we switched gears and dh started pursuing medical school. It was definitely a leap of faith, because we knew absolutely nothing about the medical world, but he wanted to do something that he felt like actually contributed and helped people. We've been on this path since before my oldest daughter was born and hopefully, we are making the right decision to continue. It feels like the right one to us right now, but only time will tell.

 

Thank you for your prayers and thoughts. They mean a lot to me.

[J-rap]

It sounds like you have some direction now, and that's great! I was going to suggest that you not make hasty decisions (to change anything), but to take your time. I know nothing about narcolepsy. Hopefully medication will enable your husband to work in his field just fine. Learn as much as you can about it, and connect with others who have it. I'm so glad things are moving in the direction you'd hoped.

 

My brother is a doctor but rarely meets with patients. He does research. If at at some point your husband decides surgery is too much for him, maybe the research part of medicine would be a good alternative.

 

I like to believe that when one door closes, another opens. My husband was just putting together plans to run for governor when he had a stroke and lost the ability to speak. He is slowly learning to speak again, but I highly doubt politics will be an option anymore! Something else will take its place eventually. Sometimes it takes a major turn of events to change one's course, but the new course can be good, too.