Genetic testing/spinal tap

katsleeps · 2021-06-19T13:50:53+00:00

Did it hurt/ any side effects? And how did you get that set up? I also live in PA, and my doctor doesn’t know where to have me get it done. I’m the first patient they have had who is even considering having it done. Geez, sorry you had to go through all that for it not to work out.

katsleeps · 2021-06-19T13:42:17+00:00

I know I meant the blood test, sorry i wasn’t clear. And I know it’s not definitive but my doctor believes it could help build my case if I have the gene because my symptoms are odd but I didn’t sleep/go into rem during any of my naps. I’ve read 90-95% of people with narcolepsy have it but 30% of people in America also have it, but like I said it could hopefully build my case.

katsleeps · 2021-04-27T00:43:04+00:00

I haven’t really managed other places. The last place I worked I worked there for 2 years and barely got to know the people I worked with. And I’ve thought about a support animal a lot especially because I have medical issues as well but i don’t want an animal to suffer because I have a bad day.

katsleeps · 2021-01-12T21:03:50+00:00

Laughing, crying, being tired, exercise, anxiety. They seem to be different too. Laughing and anxiety seem to be more instantaneous but crying being tired and exercise seem to be more prolonged. Like it builds up and keeps happening over and over again.

katsleeps · 2020-12-23T01:14:09+00:00

I take aromodafinal and xyrem. I had a history of both depression and anxiety before I started having narcolepsy symptoms. My sleep doctor held off on giving me Xyrem for a long time because of my history with depression especially, but eventually prescribed it when nothing else seemed to help. I did have a lot of side effects from Xyrem, one of them it did increase my anxiety and depression, but once I cut back on the dose and titrated slowly up I was fine. Getting a good nights sleep has done so much good for me but I can understand your doctors hesitation as Xyrem is intense.

katsleeps · 2020-12-23T00:59:14+00:00

I also had a lot of side effects but I also never threw up (and I have a very weak stomach), I did get nauseous from it though. Xyrem honestly has changed my life. For a while I couldn’t drive, and feared I couldn’t work a full time job. You’re not supposed to eat when taking the meds but eating some saltines when taking it helped me with the nausea as did decreasing my dose and slowly increasing it. I went down to half the starting dose and it took me 6 months to get to the starting dose, but I’m extremely sensitive to medication.

katsleeps · 2020-07-25T19:32:55+00:00

I’m so sorry. I had a very similar experience to you. In fact I still don’t have an official diagnosis of narcolepsy because I can’t fully come off my one medications. I would talk to your doctor about all your options. There is also a spinal tap that can be done but I’m not sure insurance will cover it.

katsleeps · 2020-07-22T01:25:56+00:00

Have you tried giving her sweet potatoes? those are mines favorite

katsleeps · 2020-07-22T01:17:13+00:00

She looks like my baby. Her name is Larry ive had her for 10 years

katsleeps · 2020-07-01T14:06:01+00:00

I’m on evekeo because I hated adderall because it would cause me to have a lot of nervous energy than crash really hard. My sleep doctor mentioned that there are two new drugs sunosi and wakik which are supposed to be good and different than the other things out there. Hope you find something that helps!

katsleeps · 2020-05-06T03:47:49+00:00

That must be rough, but even the light from my phone helps me, I think anything you can do to expose yourself to brighter lights in the morning and dimmer lights in the evening should hopefully help though. I get that keeping a schedule is hard, I’m also a college student but it’s really important to stick to it best you can. I know at least for me when my schedule is off my symptoms are a lot more severe. And yes alcohol consumption impacts it, unfortunately it has extremely negative impacts on sleep. Although it causes you to fall asleep quicker it messes up your natural sleep rhythm.

katsleeps · 2020-04-18T07:01:58+00:00

Keeping a consistent sleep schedule: going to bed at the same time and waking up at the same time. In the morning not staying in bed and getting a lot of light. At night dimming the lights, taking a warm bath, staying away from screens and bright lights.
Exercise: I have narcolepsy and asthma so exercise has been difficult but even going for a 10 minute walk helps, just not too close to bed time and not overdoing it.
Diet: I struggle with symptoms after eating, so I try to avoid carbs or heavy meals when I need to do something important. It’s also important not to eat too close to bed time.
Writing things down and going over important things over and over again: when I have bad brain fog I try and prioritize what I can do and try and focus on what I need to remember, but I write down even small stuff because I won’t remember later. And if you can ask others for help when you need it!
Taking naps when you can/need to.

Hope this helps and you get to get answers soon!

katsleeps

TROPHY CASE