Why Won't My Doc Listen
Posted 08 September 2008 - 05:21 PM
Posted 08 September 2008 - 06:28 PM
Has your doctor recomended Ambien CR, or something else you may have seen an add on TV for?
Is he a sleep doctor, or the "next best thing"?
Has he given you a reason for not upping the dosage?
What would he do if you told him it's what your going to do (It IS your body)?
Sometimes when they don't listen, we have to speak up...
But at the same time be willing to accept a good answer if given one.
I know what it's like to have someone in a white coat ignore you. When I told them I passed out when I laughed, they looked at me like I was making it up to get attention.
Just because they have a Phd doesn't mean they are making capable judgement 100% of the time.
Just because we Don't have a Phd doesn't mean have to agree with them all the time.
-Expect better always
Posted 08 September 2008 - 09:56 PM
So, ultimately, the moral of this is thus: My old doc was not "the right doc". I found "the right doc" by going to a sleep lab. "The right doc" was confident with their diagnosis, resulting in getting the proper treatment and meds. To reiterate what Stu said, if your not "comfortable" with your doc, find one that *are" comfortable with. Trust your instincts, f you know your not getting the proper treatment, find a way that you can.
Posted 08 September 2008 - 10:14 PM
And Chuck, I went thru that with another doc for another problem. I had thrown out my lower back, and could not move to leave the house. All I wanted was a little flexeril or something so I could get up and go get looked at. I got a letter the next week that said that they could not handle the complexity of my problems. For low back pain. Turned out that doc was under consent order for prescribing lots of opiates to people who sold them on the street and then taking a cut of the profits.
And this current doc, I am comfortable with her expertise, just not this particular decision. Maybe things will change on thursday.
Posted 08 September 2008 - 10:18 PM
Thankfully, I have a doc who is usually great. When he put me on Xyrem, I step up to the next dose each week. It is the recommended process by the lovely people at the Success Program. I know others who have gone up more slowly due to adverse reactions, but as far as I know there is no reason NOT to move you up in dosage. Every study has shown that patients who can take the maximum dosage (4.5g x 2) have the most success with the drug. Definitely challenge your doctor on the this. Stu is right, ask why you are not moving up. If your doctor says that she is following the recommendations, ask to see them. You are paying for her services. You deserve straight answers. Good luck!
Posted 09 September 2008 - 01:32 AM
Xyrem is SALT. Don't forget that! With a compromised liver or kidney, it can be quite risky to take!!!
As I hope I implied in my previous post, Xyrem is an extremely difficult med for me to take. During my last MSLT (WITHOUT MEDS), I averaged under four minutes to fall asleep. WITH Xyrem, I average about 90 minutes to fall asleep. My amount of sleep is ironically LESS, but the quality is better - 3 hours of Xyrem sleep is more refreshing to me than 10 hours of my "normal" sleep. It's a trade-off that "works" for me, but may not work for others.
Also, Xrem is the only med I take - I do not take any other CNS or antidepressant -- Concominant therapy with either of these is contraindicated for Xyrem and can be dangerous. And I hope that I am not speaking out of turn, and I'm not trying to replace your doc, but it sounds like you may have asked for Xyrem, instead of your doc offering it as an option? Xyrem will not make your fall asleep faster, it only improves the quality of the sleep you get. If you want to fall alseep faster, Ambien, Xanax or another benzo may be a better option?
Posted 09 September 2008 - 08:15 AM
I cut back on my dosage for other reasons (I found the higher dosage was to "trippy").
While you might be thinking that the higher dosage would be ideal, perhaps challenge yourself with what you have. Maybe find a cool exercise to do a couple hours before bedtime...something you like doing. I've found that playing vigorous wii before I go to bed helps enough.
If there's even a whisper of it kicking around your liver, maybe it wouldn't be such a good idea. If you take over-all health in to consideration, the ideal is to get perfect sleep AND a liver as strong as Superman's (Superman have a liver?).
And take the doctor's advice about your sleep hygene in to consideration (THAT was a REALLY tough one for me to do). I admit, it's strange to have someone tell me that my "sleep hygene" needed to be improved..."I'm narcoleptic...how do you THINK my sleep hygene is?"
Turns out it was pretty bad. I LOVED falling asleep with the TV on. I loved eating before bed time. I've found out how addictive these simple kuxaries are while noticing I slep a lot better. Napping during the day? You'll have to pry me away from my naps...I am human after all
Get diagnosed. This is very important. They can tell a lot from the tests...not just a "yes" or "No"
Posted 09 September 2008 - 12:43 PM
My liver, as I said previously, is FUNCTIONING fine, the tissue is damaged, but function is normal. And once xyrem is metabolized, its metabolytes are not toxic.
My sleep hygiene is good. I do not have a tv in my bedroom, I do not do anything to keep myself awake. And I do not eat before bed because the xyrem is to be taken on an empty stomach.
I do not have time to nap during the day, since I have a 2 year old who is very active. The only time I can get any cleaning or anything done is when she naps. I am doing everything I can so that I can fall asleep at night. It just does not happen.
She was the one who suggested the xyrem. And I could have been awake for days on end, I still need something to help me sleep at night. The meds that I take that are supposed to be sedating do not sedate me. That is the problem. I am tired of sitting up awake all night, and then falling asleep in the early morning and not wanting to wake up. I would sleep all day if I could. As bedtime rolls around, I feel alert and normal. I need to normalize my schedule so that my kid can live a normal life.
Posted 09 September 2008 - 05:15 PM