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Narcolepsy And Depression


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#1 corey91386

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Posted 23 October 2012 - 09:02 AM

I am having a hard time coming to terms with my diagnosis. My main concern is the depression related symptoms. I did not exhibit excessive daytime sleepiness as a symptom. About a years and half ago I laid down for an afternoon nap and woke up out of it. I felt as if I could not snap out of a trance. I was like this for a couple of months. I was then told I had anxiety of no specific category. I began my trials with the SSRI's and finally tolerated Pristiq the best. After starting the anti depressants I was very very tired all of the time. I complained about this to my psychiatrist and she insisted on a sleep study. Where I was diagnosed with narcolepsy. My first study I was on the pristiq for. I did not take this well. So I got another sleep study from the Cleveland Clinic. I quit the pristiq 2 weeks before the study. Was diagnosed again. My main question is can antidepressants cause a false positive? And can depression or anxiety set in prior to narcolepsy symptoms? Currently I am tired all day for the most part. I take a nap a day and get nothing from it. I feel foggy and spaced out all day. I'm tired but not where I can sleep tired if that makes sense. I feel like my cognitive process is all out of wack and my head is a basket case. I have a hard time talking to people because I feel like my brain is asleep. I'm awake all day but not alert. My balance is off and I feel out of it all day. Im going through the motions with not productivity. I don't like driving because I am so spaced out. Are these common of Narcolepsy?

#2 DeathRabbit

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Posted 23 October 2012 - 09:28 AM

I am having a hard time coming to terms with my diagnosis. My main concern is the depression related symptoms. I did not exhibit excessive daytime sleepiness as a symptom. About a years and half ago I laid down for an afternoon nap and woke up out of it. I felt as if I could not snap out of a trance. I was like this for a couple of months. I was then told I had anxiety of no specific category. I began my trials with the SSRI's and finally tolerated Pristiq the best. After starting the anti depressants I was very very tired all of the time. I complained about this to my psychiatrist and she insisted on a sleep study. Where I was diagnosed with narcolepsy. My first study I was on the pristiq for. I did not take this well. So I got another sleep study from the Cleveland Clinic. I quit the pristiq 2 weeks before the study. Was diagnosed again. My main question is can antidepressants cause a false positive? And can depression or anxiety set in prior to narcolepsy symptoms? Currently I am tired all day for the most part. I take a nap a day and get nothing from it. I feel foggy and spaced out all day. I'm tired but not where I can sleep tired if that makes sense. I feel like my cognitive process is all out of wack and my head is a basket case. I have a hard time talking to people because I feel like my brain is asleep. I'm awake all day but not alert. My balance is off and I feel out of it all day. Im going through the motions with not productivity. I don't like driving because I am so spaced out. Are these common of Narcolepsy?


That's similar to how I feel sometimes. In fact, there is a high incidence of insomnia among narcoleptics. Ironic, I know. But yea, I'm tired and foggy all the time, if not on stimulants, but actually trying to go to sleep is difficult.

#3 sleepywriter

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Posted 23 October 2012 - 09:30 AM

I am having a hard time coming to terms with my diagnosis. My main concern is the depression related symptoms. I did not exhibit excessive daytime sleepiness as a symptom. About a years and half ago I laid down for an afternoon nap and woke up out of it. I felt as if I could not snap out of a trance. I was like this for a couple of months. I was then told I had anxiety of no specific category. I began my trials with the SSRI's and finally tolerated Pristiq the best. After starting the anti depressants I was very very tired all of the time. I complained about this to my psychiatrist and she insisted on a sleep study. Where I was diagnosed with narcolepsy. My first study I was on the pristiq for. I did not take this well. So I got another sleep study from the Cleveland Clinic. I quit the pristiq 2 weeks before the study. Was diagnosed again. My main question is can antidepressants cause a false positive? And can depression or anxiety set in prior to narcolepsy symptoms? Currently I am tired all day for the most part. I take a nap a day and get nothing from it. I feel foggy and spaced out all day. I'm tired but not where I can sleep tired if that makes sense. I feel like my cognitive process is all out of wack and my head is a basket case. I have a hard time talking to people because I feel like my brain is asleep. I'm awake all day but not alert. My balance is off and I feel out of it all day. Im going through the motions with not productivity. I don't like driving because I am so spaced out. Are these common of Narcolepsy?


I'm sorry to hear you're having a hard time. Being diagnosed with a lifelong disorder is heavy. To answer your question, antidepressants usually cause false negatives, not false positives. This is because some antidepressants suppress REM sleep. If your first test indicated narcolepsy even while on the Pristiq, chances are the diagnosis was correct. This is backed up by the second study.

The brain fog and feeling spaced out is common. I feel like it is a manifestation of EDS. Taking a nap and not feeling refreshed is also common. Cognitive function impairment is a side-effect of sleep deprivation from not getting the right kind of sleep. What medications are on now? Some of them can also cause some of the things you're describing to worsen.

Continue to come here and ask all the questions you have. It's a great group of people, and we've all been in your shoes.

#4 corey91386

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Posted 23 October 2012 - 10:33 AM

I'm sorry to hear you're having a hard time. Being diagnosed with a lifelong disorder is heavy. To answer your question, antidepressants usually cause false negatives, not false positives. This is because some antidepressants suppress REM sleep. If your first test indicated narcolepsy even while on the Pristiq, chances are the diagnosis was correct. This is backed up by the second study.

The brain fog and feeling spaced out is common. I feel like it is a manifestation of EDS. Taking a nap and not feeling refreshed is also common. Cognitive function impairment is a side-effect of sleep deprivation from not getting the right kind of sleep. What medications are on now? Some of them can also cause some of the things you're describing to worsen.

Continue to come here and ask all the questions you have. It's a great group of people, and we've all been in your shoes.


Yea I'm basically a mess right now because I'm too foggy to research more. I was taking pro vigil and it didn't seen to do much. I am waiting for my xyrem. Maybe a stimulant like Ritalin would help my concentration better. Who knows. This disorder is really awful. The cure for most disorders is a good nights sleep. Which is something we never get.

#5 corey91386

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Posted 23 October 2012 - 10:42 AM

How do you guys work and get by feeling like this?

#6 DeathRabbit

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Posted 23 October 2012 - 10:49 AM

How do you guys work and get by feeling like this?


Over time, you'll learn little ways to tweak yourself to minimize the suck. But I won't lie, I was pretty *BEEP*ty at my job for about a year. I would recommend a traditional stimulant. The vigil drugs seem to work great for a few people, but mostly don't do anything for a lot of people. Stimulants have bad side effects, but sometimes, they're worth it. Hang in there, dude. You'll make it in the end.

#7 Megssosleepy

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Posted 23 October 2012 - 11:51 AM

I am having a hard time coming to terms with my diagnosis. My main concern is the depression related symptoms. I did not exhibit excessive daytime sleepiness as a symptom. About a years and half ago I laid down for an afternoon nap and woke up out of it. I felt as if I could not snap out of a trance. I was like this for a couple of months. I was then told I had anxiety of no specific category. I began my trials with the SSRI's and finally tolerated Pristiq the best. After starting the anti depressants I was very very tired all of the time. I complained about this to my psychiatrist and she insisted on a sleep study. Where I was diagnosed with narcolepsy. My first study I was on the pristiq for. I did not take this well. So I got another sleep study from the Cleveland Clinic. I quit the pristiq 2 weeks before the study. Was diagnosed again. My main question is can antidepressants cause a false positive? And can depression or anxiety set in prior to narcolepsy symptoms? Currently I am tired all day for the most part. I take a nap a day and get nothing from it. I feel foggy and spaced out all day. I'm tired but not where I can sleep tired if that makes sense. I feel like my cognitive process is all out of wack and my head is a basket case. I have a hard time talking to people because I feel like my brain is asleep. I'm awake all day but not alert. My balance is off and I feel out of it all day. Im going through the motions with not productivity. I don't like driving because I am so spaced out. Are these common of Narcolepsy?


Hey Corey,

Are you still taking the SSRI? You need to be careful with those drugs they can interact in ways that most doctors (all of mine) don't understand. I have been off Prozac for almost a month (should be just about out of my system!) I think it was causing serotonin poisoning! It was really terrible, and I just thought my N was getting worse and the Xyrem was causing more random rare problems. Until my good buddy Hank showed me a site where you put all your meds in and it throws out anything that could go wrong when mixing... well Adderall and Prozac don't mix well for some people (me being one of them)

Now that I am on 4.5x2 of Xyrem and the Prozac is almost out I feel like my old self again!!!! I am finally eating better and my thought process has improved... I was stuck in a foggy, sad, pit, running on a hamster wheel for a long time... and for the first time in over 10 years I can say I am not a depressed person its was the untreated N that was causing my anxiety and depression... Don't get me wrong I am far from the happy go lucky 13 year old I was before the N hit hard but I no longer wanna curl up in the corner of my closet and hide or just drive my car into a tree...

I think a lot of it comes down to excepting what you have been given, once I excepted the fact that this is real, I then set out to forgive myself... I blamed myself for my lost relationships/friendships, I blamed myself for taking to long with school, falling alsleep when I should of been studying, missing lectures while sitting in class in a fog, not remembering conversations, ect ect ect... once I started giving myself credit for what I have done and continue to do I started feeling better... I remind myself anytime life turns to a blur that it will pass... instead of getting stressed/upset/mad... I usually get up from my desk and walk to the bathroom close the door and rest my head in my hands until Ive regrouped... I also drink a ton of tea/water so at least I also Pee during the process so my co-workers dont think I am crazy lol

Once you are on Xyrem maybe you will find the relief I have... my EDS still sucks and my Cat is about the same, but giving my mind/brain the chance to shut off (deep wave sleep) the way I think has changed and I can now deal with life... before I wasn't dealing I was so so miserable!

If you take anything from my blabbering just know that its not you who is a depressed person its the N making you feel the way you do! Give yourself some credit for getting this far even with being lost in a deep fog... and when the fog lifts get the most out of that time!

Good luck :)

#8 Megssosleepy

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Posted 23 October 2012 - 12:06 PM

Over time, you'll learn little ways to tweak yourself to minimize the suck. But I won't lie, I was pretty *BEEP*ty at my job for about a year. I would recommend a traditional stimulant. The vigil drugs seem to work great for a few people, but mostly don't do anything for a lot of people. Stimulants have bad side effects, but sometimes, they're worth it. Hang in there, dude. You'll make it in the end.


I too have found that just plain ol Adderall (not XR) has been best for me. Ive tried many others. The reason I like Addy is I can take a 5mg, 10mg, or 15mg depending on how I feel if the 5 wasnt enough I take the other half! If I forget to take it I can pop one and about 15 mins later I am awake... I cannot say I love it/it works great but if I go w/o I will just sleep all day... weekends I dont normally take it and take 4+ naps lol but Monday morning I feel pretty good with just the 5mgx2 or x3

#9 corey91386

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Posted 23 October 2012 - 12:36 PM

I too have found that just plain ol Adderall (not XR) has been best for me. Ive tried many others. The reason I like Addy is I can take a 5mg, 10mg, or 15mg depending on how I feel if the 5 wasnt enough I take the other half! If I forget to take it I can pop one and about 15 mins later I am awake... I cannot say I love it/it works great but if I go w/o I will just sleep all day... weekends I dont normally take it and take 4+ naps lol but Monday morning I feel pretty good with just the 5mgx2 or x3


Thank you. Your comments are very helpful. I think I will talk to my doctor about getting a regular stimulant. I honestly think the provigil makes the brain fog worse sometimes. Or it is interacting with my pristiq. I have high hopes for the Xyrem.

#10 Hank

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Posted 23 October 2012 - 02:43 PM

I too have found that just plain ol Adderall (not XR) has been best for me. Ive tried many others. The reason I like Addy is I can take a 5mg, 10mg, or 15mg depending on how I feel if the 5 wasnt enough I take the other half! If I forget to take it I can pop one and about 15 mins later I am awake... I cannot say I love it/it works great but if I go w/o I will just sleep all day... weekends I dont normally take it and take 4+ naps lol but Monday morning I feel pretty good with just the 5mgx2 or x3


Thank you for that. I checked out the differences between the XR and plain. The plain reaches its peak sooner than the XR. I have been feeling best mid-day and wanting to feel that way all day. I think your strategy of take what you need when you need it is great. Right now I am going between under stimulated and over stimulated- and I want it to be Just Right. I appreciate the tips.

#11 sleepywriter

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Posted 23 October 2012 - 09:02 PM

Yea I'm basically a mess right now because I'm too foggy to research more. I was taking pro vigil and it didn't seen to do much. I am waiting for my xyrem. Maybe a stimulant like Ritalin would help my concentration better. Who knows. This disorder is really awful. The cure for most disorders is a good nights sleep. Which is something we never get.


I couldn't tolerate either "vigil" and ended up with Ritalin. It helped, but the peaks and valleys sucked. You learn how to dose eventually so that you don't come off the stimulant so bad that you end up crashing. I kept taking more and more because it kept losing its effectiveness - that's just how it is with stimulants. I finally gave in and started Xyrem at the end of May. I can't seem to tolerate a high enough dosage to keep me asleep for the full four hours (or even 2.5 some times), but it is still an improvement over Lunesta and other sleep aids I've tried. Prior to diagnosis and starting sleep aids, I could not sleep more then 45 minutes straight. I've also gone gluten free, and that really helped reduce the brain fog and removed a layer of fatigue. Between the diet changes and the Xyrem, I've cut down from 3 ritalin per day to maybe 3 per week. I do still require a nap daily, and I do still struggle with staying awake when I get home from work, but I feel like this will improve in time. I've been under a lot of stress, plus the weather change doesn't help things. Darkness and stress = sleepiness!

#12 sleepywriter

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Posted 23 October 2012 - 09:05 PM

How do you guys work and get by feeling like this?


Work is a necessity for me. If I don't work and keep myself busy, I will sleep all day long. I also take a nap during the day while at work, and sometimes I end up taking another before I drive home if I'm having a rough time. This tends to be the case if I've missed a night of Xyrem or have not stuck to my sleep schedule.

#13 DeathRabbit

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Posted 24 October 2012 - 11:22 AM

Hnnnnngggg, I forgot my stimulant this morning. I am so depressed and I feel anxious and pointless. *facedesk* :wacko:

#14 Megssosleepy

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Posted 24 October 2012 - 11:34 AM

I couldn't tolerate either "vigil" and ended up with Ritalin. It helped, but the peaks and valleys sucked. You learn how to dose eventually so that you don't come off the stimulant so bad that you end up crashing. I kept taking more and more because it kept losing its effectiveness - that's just how it is with stimulants. I finally gave in and started Xyrem at the end of May. I can't seem to tolerate a high enough dosage to keep me asleep for the full four hours (or even 2.5 some times), but it is still an improvement over Lunesta and other sleep aids I've tried. Prior to diagnosis and starting sleep aids, I could not sleep more then 45 minutes straight. I've also gone gluten free, and that really helped reduce the brain fog and removed a layer of fatigue. Between the diet changes and the Xyrem, I've cut down from 3 ritalin per day to maybe 3 per week. I do still require a nap daily, and I do still struggle with staying awake when I get home from work, but I feel like this will improve in time. I've been under a lot of stress, plus the weather change doesn't help things. Darkness and stress = sleepiness!


I was having the same problem with my xyrem... it just would last long enough... I really need to write a post about this, but have been busy at work lately.

What I have started doing is letting myself fall asleep around 10:00/10:30 (no Xyrem) at first I set an alarm for 12:00 but found I was waking up on my own before then, in my sleepy daze I take my first dose, then a second alarm goes off/or I wake on my own for the second dose... this can be tweaked I set the alarm for 2.5/3/or 3.5 hours later depending on what time I need to wake... weekends no alarm! (I hope this is making sense) taking both doses this way has made me get so much more sleep! and taking the dose later= more empty stomach and that makes the Xyrem last longer... this morning I was dead asleep when my light alarm slowly woke me up... havent taken my addy yet, but will be shortly!

I wouldn't recommend this for someone who sleeps like a rock... but I am one of PWN who wakes up alllll the time when not on Xyrem so its perfect for me, the weekends are the best cuz I can finally sleep in till 9am or so instead of being wide awake at 5:30am!!!

Hope this will help you too, cuz only getting 5 hours of sleep even though its good sleep sucks!

#15 Megssosleepy

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Posted 24 October 2012 - 11:37 AM

Thank you for that. I checked out the differences between the XR and plain. The plain reaches its peak sooner than the XR. I have been feeling best mid-day and wanting to feel that way all day. I think your strategy of take what you need when you need it is great. Right now I am going between under stimulated and over stimulated- and I want it to be Just Right. I appreciate the tips.


I am glad I could help, I found the XR was up and down up and down for me all day... I know what to expect with the low dose adderall... if I need just a little boost to get me till I get home I take a little boost if I need to get through my Tuesday night lecture I know I need more... Also it helps with eating... if you want/need a big meal take the dose later... I use these windows to snack attack!

#16 The Dreamer

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Posted 24 October 2012 - 11:47 AM

I don't know if antidepressants can cause a false positive....I suppose its possible. Given that some antidepressants can cause false negatives (by suppressing REM). Somehow I thought HH and REM went together....but I found out that I can be REM suppressed, but still have HH. Though I only just learned that there's two kinds of HH.... Hypnagogic and Hypnopompic Hallucinations. I experienced the Hypnagogic during my MSLT, but the Hypnopompic Hallucinations are more common for me. In fact, I came across an article somewhere that says hypnopompic hallucinations would be the better indication of Narcolepsy....since there's apparently a fairly large percentage on non-narcoleptics that experience hypnagogic halluncinations...but hypnopompic is less prevalent....

Anyways....I had kind of hoped that I would be thrilled to finally get a diagnosis...but instead I kind of fell into a depression, partly because at first it didn't feel like anything had really changed except that I had a diagnosis. And, partly because of the avalanche of my past...the things I feel cheated out of because I had gone so long before getting to this point. Eventually found somebody that was comfortable in treating it.... haven't decided if I'll find somebody for long term therapy....have only been using the free sessions through EAP.

Though in the past, I've been told in the past that I have an adjustment disorder. Thinking back I while I was thrilled when I got my Sleep Apnea diagnosis initially, I did later fall into a bit of depression. But, it ended after my first sci-fi convention with CPAP, something I obsessed over whether I could do....it partly helped learning that a number of well known regular attendees also use CPAP. Though I haven't been to that particular convention in the last few years, for a different reason.

Not sure what I should do to adequately get over the Narcolepsy diagnosis.... its doubtful my parents will come around anytime soon. Though it is one thing I won't talk about in therapy currently....because there's 40+ years of baggage...not just the recent stuff to go through.

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#17 exanimo

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Posted 12 November 2012 - 08:12 PM

I think that sometimes people will be diagnosed with depression falsely due to the symptoms of narcolepsy. People who go to their doctor and tell them that they are 'always tired' are generally going to get the diagnosis of depression before narcolepsy. Because people who don't have N or have no experience with it, often do not understand the level of tiredness we are talking about. Not to mention that so many people with N have trouble getting up in the mornings and feel foggy, which are also commonly associated with depression. This is not to say that the two cannot both be present, just that often depression can be diagnosed when the symptoms may not be from depression but narcolepsy. If a person exhibits other symptoms of depression, such as low self esteem and a low level of overall enjoyment from life, or even suicidal thoughts, then depression is probably a correct diagnosis. And of course, if a sleep study is done and Narcolepsy is diagnosed as well, then it is entirely possible for the two to be present simultaneously.

Most people here have commented on medications, and these comments are very relative. I do not want to say that they are not or that medications don't make a difference, but I do want to point out that there are other options. If in fact, a person has both depression and narcolepsy, then it might be worth looking at treating both with or alternate treatment with medication. What I mean by this is to not ignore other types of treatment such as behavior modification. Any decent Neurologist would tell you, when you're diagnosed, about the medications that are available and which are most recommended. However, a decent Neurologist will also tell you about routine and how to optimize your quality of life when living with a chronic condition, such as Narcolepsy. Because yes, it is likely that one of the medications you try will help, but they will never cure the condition (at this point in time). So to optimize quality of living, it is also recommended that the person with N modify their behavior. It is commonly recommended that PWN have a set sleep schedule and also scheduled naps. Other options to consider are diet and nutrition, exercise and coping strategies.

What I want to point out is that depression can be greatly improve or 'cured' by behavior modification as well. This is most commonly combined with medication. So if you have not all ready considered therapy, it is worth looking in to. Especially when taking in to account the diagnosis of N, because most people who are diagnosed with chronic conditions can benefit from therapy.

I was diagnosed with depression when I was 15, and was lucky enough to go to a residential treatment facility. It is very sad to me that they do not offer these types of facilities for adults (or at least I haven't found any, in my limited research. They are offered for people who have mental disabilities and also drug or alcohol dependence). I learned a lot of things while in treatment, and they were very valuable. But most of what I learned is also available by seeing a therapist or other psychiatric professional. Working on things such as self esteem, coping mechanisms, and any other psychological problems that can cause or contribute to depression is very helpful. Another option, that may either go along with therapy or stand alone, is spiritual study. This could be religion, it could be meditation or any other form of spirituality. Finding something metaphysical is very beneficial to anyone because it offers a higher sense of hope and can ease some of the weight we feel as people in today's fast paced world.

Hopefully this helped. Again, I am not trying to say that medication is not relevant because it very much is. I just thought that I'd add to other treatment options. These do not work for everyone, but it is important to be open minded when looking for a treatment that will work best for you. Because there are many options (I didn't really delve in to homeopathy or anything, but they are options, too). Good luck! And I sincerely hope that you find something that works for you. My doctor was very straight with me when he said that I will never completely eradicate my N symptoms, but that hopefully we can find a treatment plan that will optimize my performance and ability to cope with my N. So this is what I strive to do. :)

#18 Arrow2

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Posted 26 January 2013 - 07:57 PM

How do you guys work and get by feeling like this?

I don't know how you guys do it either.

 

I worked and "got by" for 3 years before being diagnosed. I gradually had responsibilities taken away and a good reputation largely destroyed. I am newly diagnosed and I don't think I have the ability to "get by" anymore. I have a 3 month leave ahead of me and am already scared treatment isn't going to do enough and I will gradually lose my job despite accomodations. It sucks to finally know what is wrong but be told there is not cure...