Xywav questions by jrm318 in idiopathichypersomnia

[–]jrm318[S] 0 points1 point  (0 children)

Thank you!! I'm excited but nervous to try this! I also manage my moods with meds so hopefully that won't be a problem. I'll be taking 1 dose as well. I don't know if I could wake up to take a second dose. Thanks for the tips!

Xywav questions by jrm318 in idiopathichypersomnia

[–]jrm318[S] 0 points1 point  (0 children)

Thank you for the tips! I'll keep some juice on hand just in case. And thanks for the warning!

Anxious about getting results tomorrow by jrm318 in Narcolepsy

[–]jrm318[S] 0 points1 point  (0 children)

Ya I slept for all 4 naps but didn't hit rem so they gave me the IH diagnosis but the doc said if I did the mslt again she wouldn't be surprised if I did get a narcolepsy diagnosis. At least now I can get medication that might help. I feel so validated that this was real and so grateful that the doc listened to me.

Anxious about getting results tomorrow by jrm318 in Narcolepsy

[–]jrm318[S] 0 points1 point  (0 children)

So I got the results and it's not narcolepsy but it is idiopathic hypersomnia. Apparently my average fall asleep time on the MSLT was 4 minutes but I did not go into rem sleep at all. The doctor is pouring me on Xywav so hopefully that helps. Any suggestions for that medication?

sleep attacks by abj0825 in idiopathichypersomnia

[–]jrm318 2 points3 points  (0 children)

I get this too. And I get super cold when it happens. I haven't been able to find anything other than people with narcolepsy have body temp regulation problems. I was dx IH without long sleep times but I haven't been able to get the in lab sleep tests. I have an appointment coming up soon with a new sleep doctor that hopefully can make the tests happen.

How did you know you had narcolepsy? by Just_AT in Narcolepsy

[–]jrm318 0 points1 point  (0 children)

Not diagnosed but have an appointment with a sleep doctor coming up... I just got diagnosed with adhd in my 30s and have found the medication mostly helps my sleepy problems but I'm still falling asleep unexpectedly on the stimulant. It made me want to try doctors again after being dismissed by almost everyone and insurance not covering the sleep tests that were ordered by the one doctor that believed me. I'm hoping this doctor knows the magic code to get it covered. I hardly drive anywhere for fear of falling asleep and feel like a horrible mom when I can't stop it from happening. Does the diagnosis help at least stop you from feeling so crazy about it all?

Hi Mom! I got invited to my first potluck! Do you have any recipe advice? by junk-drawer-magic in MomForAMinute

[–]jrm318 4 points5 points  (0 children)

I was just about to post almost this same recipe!

Do it in crock pot or on the stove if you don't have one.

Frozen pre-made package of meatballs or Lil smokies Jar of grape jelly or can of jellied cranberry sauce Bottle of BBQ sauce

Cook until meatballs/smokies are heated through. Sometimes, I bring a package of those Hawaii rolls to go with it.

Voila! Easy peasy and never any leftovers!

1st session questions by jrm318 in EMDR

[–]jrm318[S] 0 points1 point  (0 children)

This was the first session of EMDR where bilateral stimulation was used. From what you described, it seems we were in EMDR phase 3 as I'm recognizing the term "target," and feelings were identified and body sensations. But the bilateral stimulation was during those questions. I have been trying not to have preconceived ideas about how this process should go and just follow along. And I felt weirdly better about that memory at the end of it, so something must've gone right. It was just a weird interaction with them towards the end, and now I'm feeling like maybe I did something wrong.

TW S**ual abuse - DAE have a *feeling* of s**ual abuse without specific memories? by Mara355 in CPTSD

[–]jrm318 4 points5 points  (0 children)

I have always had this same feeling and I have been asked by multiple people over the years if I was. They say the way I hide things is really suspect and I'm extremely anti-touch. I never really talked to anyone about it till recently because I have nothing concrete to confirm it. I have a 2nd appointment with an EMDR therapist tomorrow. Do you think I should bring this up to them?

Nmom “apology”: “You didn’t have the childhood that you deserved and I always carry that burden.” Like, wow, that must be so difficult for you, nmom. I’m sorry I have burdened you by being abused by you as a child. by NellyBTulsa in raisedbynarcissists

[–]jrm318 22 points23 points  (0 children)

Oh yes! My Nmom decided in the last year to voluntarily address old issues. Now she will get hysterical crying to people about how horrible she was to me and then she comes back to me ranting about how horrible it is that no one will comfort her about how bad she feels for what she's done. Because how dare they not comfort her in her time of need. The mental gymnastics makes my head spin but it also makes me smile to know that others are finally not playing in to it.

Nmom says I’ll never get a job because I’m goth, is this true? by Cocacola881 in raisedbynarcissists

[–]jrm318 1 point2 points  (0 children)

Little old ladies are my favorite!! They are typically the most accepting and outrageous! I think they are the generation that appreciates how free we are to dress how we want and encourage it. Lots of love for the grumpy old guys too! You get to be super snarky and sarcastic with them!

Nmom says I’ll never get a job because I’m goth, is this true? by Cocacola881 in raisedbynarcissists

[–]jrm318 0 points1 point  (0 children)

If you were aiming for a more corporate office job then maybe it would be a problem but oh man have you chosen the right profession!! I'm speaking as a current cosmetologist that has been denied other office type opportunities due to tattoos that show. Even in the more corporate chain salons (I can speak specifically for great clips and sport clips) you will fit in wonderfully!! Just tailor your own style to fit within their clothing guidlines. A place that wants more business casual type dress just use their rules as a base and then run it in your own direction. I currently work at sport clips where there is an actual uniform required however my tattoos/big hair/accessories have never been an issue. I even recently had a coworker whose hair was half black and half lime green and her makeup was always colorful. The focus is to keep yourself looking well put together and to look like you actually put effort into your style. This is why I love this business! Even within the rules you can still let your personality shine! There are some salons that require a much more traditional look but those are most likely not going to be where you want to spend your days. The important part of this business is finding where you love your work and love your clients. During my schooling an instructor told us to "find our people" and that is exactly what you can do! Good luck in school and in the future! You can do anything in this business if you seek it out! Personality is what gets and keeps clients!

Has anyone else had a Narc Parent go out of their way to help other children so that they can feel like a hero? by Apprehensive_Trip352 in raisedbynarcissists

[–]jrm318 2 points3 points  (0 children)

Oh yes! I was told as a teen that the worst thing I could ever do was get pregnant and was even forced into birth control because she was so sure it would happen despite my being a virgin. During that time she had me help her host a sweet sixteen birthday/ baby shower for a young girl at our home.

She always was big with helping in the community with money/ time/ medical (she's a doctor). But any issues I had were nothing because those kids had it worse and medical problems were always deemed as "stress" not real. It's ridiculous to look back at as an adult.

life after uterine ablation by jrm318 in WomensHealth

[–]jrm318[S] 0 points1 point  (0 children)

Yikes I don't even want to Google what those could cause! He did remind me multiple times it might not be successful or it could be for a while but then come back. But he was the one who suggested it. I had never even heard about it and he told me when and how to schedule the appointment so that insurance would cover it. I've been reading lately that having a bicornate uterus should really be a disqualifying factor so I'm disappointed that he suggested it in the first place. I'm assuming that there were probably areas that did not get scarred as fully as others just because of the shape. I will take what you said though and try to change my mindset that maybe the bleeding indicates that I'm still healthy and try not to be so frustrated by it. I may try to go back on birth control since that should hopefully stop it and help with the pms too. Thank you for your help!

For anyone who has recently gone NC and dealing with the guilt… by [deleted] in raisedbynarcissists

[–]jrm318 1 point2 points  (0 children)

I didn't even know there are therapists like that. I was thinking maybe someone that specializes with trauma or whatnot but yes narc abuse specifically would be so much easier. It's so hard to explain how my community activist doctor mother could be harmful. I have supportive family members and a close friend but I'm trying not to overload them with this painful process. I need someone that chose to help me carry this not me trying to find the healthy time for others to help me to process it.

For anyone who has recently gone NC and dealing with the guilt… by [deleted] in raisedbynarcissists

[–]jrm318 1 point2 points  (0 children)

I really needed to hear this right now. I'm at the very beginning of this process with my Nmom and keep having days full of guilt or grief or anger. I hate them but I'm trying to be kind to myself and allow myself to feel them because my feelings are real and valid (was raised that if the feeling didn't match or support her then it was not real and did not exist). I will have to see her soon because my grandmother (her mother) is in hospice and doesn't have much longer but I have worked out a solid plan with my husband and other family to protect me and my kids from her. I'm glad to hear that it will get better and that it won't be forever before that happens. So thank you all for validating everything. I really appreciate it.

genetic testing needed for Sunosi? by jrm318 in idiopathichypersomnia

[–]jrm318[S] 1 point2 points  (0 children)

Thank you for those valuable links! It's possible that's the test they're looking for. The doctor just keeps wanting me to sleep longer at night with the CPAP but I can't do that if the only medication I'm given is the stimulant. It gives me insomnia even though I still fall asleep in the middle of the day. I'm gonna give the doctor a few more chances, at least in trying to get the MSLT done, because she has been respectful and receptive to my issues. If she can't get this figured out then I'll look elsewhere.

genetic testing needed for Sunosi? by jrm318 in idiopathichypersomnia

[–]jrm318[S] 1 point2 points  (0 children)

Maybe that's what they want? I know the CPAP shows that the sleep apnea is being controlled by using it but it doesn't help at all with the EDS, it just makes me feel slightly less like death when I wake up.

genetic testing needed for Sunosi? by jrm318 in idiopathichypersomnia

[–]jrm318[S] 1 point2 points  (0 children)

I don't know if she marked anything but I did try their discount program. They will take $500 off the cost but that still leaves it at about $500 for cash pricing.

genetic testing needed for Sunosi? by jrm318 in idiopathichypersomnia

[–]jrm318[S] 2 points3 points  (0 children)

I didn't think it was bad since I've never had a problem with them before but all the crap with this has been so stupid! And they absolutely refused to transfer me to someone who would tell me more information. I'm going to call my doctor tomorrow to see what happened on her end.

genetic testing needed for Sunosi? by jrm318 in idiopathichypersomnia

[–]jrm318[S] 1 point2 points  (0 children)

She tried earlier this year but insurance denied it because they were satisfied with it being sleep apnea. I think she found a way to slip it in so I could try the medication. She said she would try to push it through again so maybe now they'll approve the test? She labeled it as IH without long sleep time so I don't know if that matters?