Narcolepsy Is Taking Over My Life. Please Respond.
Posted 10 July 2013 - 11:15 AM
Posted 10 July 2013 - 11:53 AM
I have found that building a medical team has been extremely important. Here is what I have done:
Sleep medicine specialist- good for diagnosis and medication decisions. Not so great with helping me through side effects, discussing how to manage them or how to live with this illness. I was told repeatedly that I was doing great for someone with N because I had a job, a family and exercised a lot and was not overweight. The sleep docs did not listen to how hard it was to keep all that afloat.
Family Doctor- good for helping to manage my general health. She detected my vitamin D deficiency, low adrenal levels, pre-diabetes. There are health problems that we are pre-disposed to because of Narcolepsy.
Psychiatrist- very helpful for managing side effects from medications. They are well trained to listen and take these concerns seriously. Most of the side effects I have experienced have been missed or minimized by my Sleep doctors (2) which was really frustrating. When I went to my psychiatrist, she identified that they were medication related and communicated with my sleep doc.
For example, I had anxiety, depression and weight loss while on Xyrem and Provigil, Adderall and Nuvigil. The sleep docs and FP said these were evidence of a psychiatric disorder that needed to be treated with medicatiton. When I went to my psychiatrist, she consulted with the sleep doc, removed me off Xyrem and stimulants, treated Cataplexy with Effexor 150 mg (which is an SNRI). 4 days later, I had an appetite. My depression and anxiety cleared over the weeks. And prescribed Trazadone for my disturbed sleep. So, I have my life back.
Counsellor (PhD) in Behavioral Sleep Medicine- a clinical psychologist who is trained in sleep disorders. She has helped me identify triggers for Cataplexy and ways to manage it. She has trained me how to take naps- I never allowed myself to nap and just pushed myself relentlessly hard through sleep attacks. A counsellor who did not have the background to understand the medical complexity of N and C tried to equate N symptoms to depression and C to a "conversion disorder" and exaggerated stress response. And my auditory hypnopompic hallucinations (I hear music when I wake up) became evidence of psychosis.
So, I have had to hand pick a medical team that can teach me - not who I have to teach. I was reluctant to see a psychiatrist because I did not want to be labled as a "psychiatric patient". However, that did not happen and I do not regret my decision.
We really need to be listened to, taken seriously and helped- and that takes a team, not just a prescription refill.
Everything I read for N stated the importance of Health Care Counselling and a support group. When I looked for that it wasn't there. So I had to build it myself through trial and error. This is not like cancer or diabetes where there are numerous resources available. There are just too few of us and too little awareness of N.
I do not think you are crazy. I do think you do not have the right help. I think you deserve an enormous amount of credit for what you have accomplished and how you have compensated. I think you need support and a good team behind you. To stay with the race analogy, I think you need a pit stop with a good pit crew before your engine blows. Then you can decide to get off the race track and out on the open road, with the top down and a great CD playing. It is possible- you have what it takes- you have already proven that to yourself.
Posted 10 July 2013 - 12:14 PM
It changes everything. Don't let it destroy you though. Hank is right. Educate yourself, build a support team.
Posted 10 July 2013 - 02:03 PM
Great post Hank!
mwright...take a deep breath...you are at the bottom of the hole. You WILL climb out of it by sheer will power because YOU are in control.
Please take Hank's advice to heart. Finding the right support team and the right meds will take time but I'm confident that you are more than capable of getting your life back on track.
Posted 10 July 2013 - 02:10 PM
NetiNeti is right on.
It does change everything and one can not let it destroy them, educating/learning about the condition/disorder/disease and building a support team is all crucial.
We all have a different story and no two of us are the same. Living with this condition/disorder/disease is more than tough and takes real strength (which often we ourselves can hardly note having, and/or at all, existing).
In life we all win some and lose some, the condition/disorder/disease is a game changer but not a game breaker, by any means; with proper balance and proportion, both requiring continual awareness and constant attentiveness, one does succeed.
Day to day, week to week, month to month, year to year, now and then random with unknowns, ups and downs; a roller coaster ride it is, or can be.
It becomes a lifestyle factor which one must adjust to, gauge, and fine tune for their own stability and comfort; it takes time and juggling, along with some good people (or perhaps, even, just one) in your corner.
Remembering, staying conscious to nature being nature, knowing that there are always others worse off and in more difficult circumstances within the world; for me, is very important.
As is also helpful and important for myself; reflecting upon what it is that I do have and what all I have managed to do, throughout my life, regardless of the condition/disorder/disease /s impact and/or presence.
A gentle step backwards can result in many steps, forwards.
This forum and the grand amount of other resources on the internet, full of information regarding this condition/disorder/disease, has helped me tremendously in coping, venting, and most valuable of all, learning.
Stay strong, you can get through and beyond.
-> Hank does give great advice.
Posted 11 July 2013 - 03:14 PM
I am seeing a psychiatrist for symptom/side effect management as well. My sleep doc wasn't bad, but beyond diagnosis and prescribing stimulants and/or Xyrem, he's not useful for much.