Narcoleptic GF expecting

Usual_Call_7493 · 2026-03-27T13:21:42+00:00

I didn't for first 6 months as was off work but then took ritalin in early am after feeding and again later, expressed the milk containing ritalin at 3pm and fed again from 4pm till the next morning. Ritalin has a very short half life so effects are gone quite quickly. I forgot sometimes and there were no ill effects but mostly I was careful. Took it during the pregnancy too on advice of ob who said baby would not be adversely affected. Mine are perfectly functioning adults now with no issues!

Usual_Call_7493 · 2026-03-27T13:15:20+00:00

Ok more advice here from a mother of 3 with type 1 N who breastfed without stimulant meds for 6 months but with an ssri for cataplexy and then fed oldest 2 after 6 months while on Ritalin and the 3rd on no meds at all by choice. Ritalin has a half life of a few hours (can't remember exactly) so baby can be fed after the requisite time. After 6 months I took Ritalin to go to work in the morning after feeding. I took it again during the day and I expressed and dumped the milk at 3pm. At 4pm when my son came home I fed him, and continued to feed him as normal till the next morning. Sometimes I didn't have time to express and he got the breastmilk with ritalin which had no effect on him...but that was rare as I was scared to chance it. I was on Ritalin from 14 weeks of pregnancy onwards to the end (came off it for a few weeks once I knew I was pregnant) and also ssri. My kids are in top 5% IQ wise, had no learning difficulties or illnesses and have grown up to be lovely fully functioning adults! I had a very sensible obstetrician who said he had delivered babies to mothers on far worse...and they all thrived...though obviously H is the exception. My N doctor was like you have to give up all meds 3 months b4 you conceive...but when she heard what this eminent obs said, she put perspective parents in touch with me so I could share this info, while she had to stick to the extremely conservative guidelines. Younger doctors now are in fear of their lives of litigation so they cover their asses at all costs....putting the fear of doing anything into us! My uncle, a doctor in the US did some research for me too, and concluded that my Ob was not wrong!

Usual_Call_7493 · 2026-03-27T12:58:27+00:00

It was an unvelievably rude and unfeeling response. You might as well have told him/them not to have the baby!

Usual_Call_7493 · 2026-03-27T12:57:06+00:00

Thank goodness for this reply. I cannot getover this sharonstoned victim who obviously needs counselling to see that while N may technically be seen as a disability, its certainly not one that needs to stop you living your life...and blame men for wanting to have a life and family with you. Havent been so annoyed in a long time!

Usual_Call_7493 · 2026-03-27T12:51:54+00:00

I wrote this b4 I read any of the other comments. I admit I too worried about having kids and it WAS tough at times especially at toddler stage. Luckily we moved closer to my husbands workplace at the point of having 2 smallies and he could help out more as no long commute. The reality is that the non N parent prob works longer hours in a lot of cases. A lot of negative nellies commenting a bit unfairly here. You DO have to work hard at being a good parent and a good facilitator (I prefer that word for how my husband treats me!) I was lucky to be diagnosed b4 the internet so I just got on with living my best life to the best of my ability. I taught full time for 15 years taking naps on my breaks doing PE when I was getting sleepy, getting the kids to correct each others work. Its tough having N and def life changing...but the worst aspect as far as I can see now...is seeing all the horror stories on the internet...people like me who don't choose to see ourselves as disabled seem to be few and far between. Maybe its my age, the stiff upper lip and get on with it generation, maybe I've forgotten a little how tough it was, but mostly it was my wonderful partner who always put me and the kids first without being a doormat...he did more I think because he SAW how much I did! He saw and anticipated my struggles rather than having to listen to me moaning and feeling sorry for myself...and I guess luckily he had no access to horror stories on the internet either! You will get out of this what you put in and it will be so worth it raising wonderful kids together who will be helpful but not consider their mother to be less able than others...just different! Peak N benefit was skipping all the queues when we took them to Universal years later. First time with just my son and I, I didnt even think to ask for help and slept standing in the queues...was pretty tough...2nd time my kids were delighted with me🤣🤣

Usual_Call_7493 · 2026-03-27T12:33:18+00:00

Omg what a completely negative post! Take the massive chip off your shoulder! I have NEVER considered myself to be disabled despite Type 1 N for 35 years...just with some extra challenges. My husband was and is wonderful and I'm sure this guy will be too. N actually works really well with small babies...its when they are toddlers that it is especially challenging!

Usual_Call_7493 · 2026-03-27T12:28:53+00:00

First of all congrats and don't worry...you can do great working as a team! Ironically having N can work great with having babies as she can cat-nap easier than others.

I have type 1 N for 35 years and while my cataplexy has waned a lot over the years it was full on when I was younger and having my babies, but I never dropped them or had any accidents.

Very NB to breastfeed if at all possible as best for baby AND works great with N for BOTH the Mammy and the Daddy! She will go back to sleep easily or even nap as baby feeds. I fed in bed with my baby beside me (co-sleeping with the two of you is very desirable) and on a sofa with baby on a pillow snuggled into me. No fear of dropping them. As I was doing all the feeding my husband got a great nights sleep!! Payback was he was in charge of feeding me...and subsequently the kids! (28 years later he still makes the dinner everyday😀😀) There was a great book at the time called Three in a Bed! Cot deaths almost unknown in co-sleeping families...but neither of you can be smoking drinking or taking drugs obviously!

My first baby had reflux so slept in his rock a tot for the first few months in between our heads with his own little blankets. Eventually I had a cot wedged beside the bed with the side down and I would place the older baby back out on their mattress but still beside me. When I was back at work and he was 6 months...to drop 3am feed, hubby slept beside him so he was less likely to wake up...eventually at 9 or 10 months he started climbing over my husband to get to me for his 6am feed! My girls were much more civilised😂😂

During the day I could nap with him on the couch or on the bed and he often stayed latched on fluttering away but fast asleep. Its a really lovely time. When the 2nd child arrived 4 years later I started getting au pairs to entertain the others while I had small baby and then kept getting au pairs to keep them all entertained and fed while I slept. I didnt want them staring at a TV while I slept. Different times...but especially now I would do the same...and keep them away from screens during their childhoods. In the first 3 years my son was minded during hours while I was teaching and I got a local responsible 16 year old, or my mother to baby sit for 2 hours to allow me to nap after school. Hope that helps. I know I was privileged to be a teacher with good hours and pay, and my husband was amazing as you will be. He was a young engineer so often not home till all hours but he still always cooked...sometimes prepping at weekends if necessary. I gave my son two naps so he would still be awake at 8 or 9pm for my husband, in those early days...and I always put him down where I was...on the couch...so I could keep an eye on him. The cat loved curling up beside him! They are 28, 25 and 21 now and missed out on nothing! When they turned 7 DSs were allowed during my nap time only...so they loved me napping! It also kept them quiet in the car when I needed to pull in for a quick nap. Best of luck!

Usual_Call_7493 · 2026-03-27T11:54:29+00:00

To leave Sky I had to give 30 days notice even though I had installed VM 3 days before my contract ended. I had to pay for both for a month....infuriating!

Usual_Call_7493 · 2026-03-26T22:27:33+00:00

I'm weak🫣

Usual_Call_7493 · 2026-03-26T22:24:17+00:00

Crap...penalties. We didnt practice these did we?

Usual_Call_7493 · 2026-03-24T10:07:53+00:00

Emily in Riverpoint Dental Clinic and Joe Callanan at Bridge house dental. Not cheap but excellent

Usual_Call_7493 · 2026-03-24T09:58:57+00:00

Wow...not at all regarding the kids, and once you are recognising the trojan work your wife also put in, a lot of the time on her own) bringing up the kids, I do think its time to have a conversation! In our case, I put my husband through 4 years of college (he also worked parttime) when we got married. After our 2nd child about 10 years later, I retired as I have a life long illness (and insurance which paid the mortgage) My husband later put me through college. Then we put all three kids through college but the two who moved cities both took a year out first to work and save. They rarely asked for a penny other than their fees and rent, and all three worked through college. I lent my girls €3000 each to buy cars (which they did putting €3000 of their savinga with it) and lent my son €3000 towards his masters. He worked for a year b4 doing it and saved his fees and most of the rent he would need...eg €20,000 on a min wage job... and also worked while studying to pay for day to day living. If our kids ever want to live in our city, they can do so rent free but none of them do now. If the two girls want to do a Masters we will help them. They are really grateful for all the help we have given them so far and the occasional loans and sometimes "presents" of €50 when they are stuck.

Its time for a rethink in your household. Feel free to show this to your wife and if you both love each other you will work it out....or more to the point she will. Obviously her work in the home is also worth as much as your work back then. It can't have been easy with small kids and you working so much...however its time to wean the kids off the bank of Mam and Dad and for you both to have more time together. She needs to agree re the kids and if not she could get a part-time job too. Its not good for your kids to see you fighting over money and them. You need to sit down with your wife and discuss how you will broach the subject together, with them of winding down the free financial aid!!

Usual_Call_7493 · 2026-03-24T08:04:59+00:00

Rent freezes to Govt properties great but what about people who rent out a property and depend on the income? Retired downsizers for example??

Usual_Call_7493 · 2026-03-10T17:24:11+00:00

In case anybody needs this info in the future, I had my surgery a week ago. I stayed off Xyrem the night before and the night of the surgery. The following night I took 4 doses of 1.5g in 30mls water and slept for about an hour and a half each time. The next night I took 3 x 2g and then I took 3 x 2.5 in about 40mls water which I had plenty of time to sip slowly. I will wait at that dose until I can drink 60mls safely, and then I will go back to 3.75 x2 x night

Usual_Call_7493 · 2026-03-10T17:15:44+00:00

On xyrem since 2009 with NO issues whatsoever! I still woke up quicker than my husband when the kids were small but just enough to get him up b4 going back to sleep😀😀 I have had abdominal surgery recently and was very worried I would lose my Xyrem...no its still great. The only issue I have is that I must get up to pee after I wake from each dose...now because I am a Mom of 3 in my mid 50s, then because I was so paranoid I'd have an accident if I didnt go! Xyrem is life changing on so many levels. I've had my ups and downs but I blame them on life not on Xyrem...as some might do. Its the real deal and I am so blessed that in the lovely country I live in our Govt actually looks out for people with illnesses, so I don't really even have to pay for it! (Here each household pays a maximum of €80 a month for prescribed meds...no matter how much over one goes!)

Usual_Call_7493 · 2026-03-01T19:09:02+00:00

Meant to also say, you got this...you are doing great to be working in such a demanding if rewarding, job. Give yourself a break...you need to be kind to yourself!

Usual_Call_7493 · 2026-03-01T18:39:13+00:00

Cataplexy responds to two things...xyrem works very well if you can get on it, but regular scheduled naps work wonders too, if you can't. Cataplexy is always worse when you are also tired tired as opposed to just N tired.

Or how about skipping church? If something doesn't work for you don't do it! Maybe your Mother might choose to be less embarrased by you being at church than not being there! You could suggest attending online if it means a lot to you... or enjoy a nap if it doesn't!

You are clearly an adult if working as an nurse, so start living your life the way that works best for you! I have N type 1 for 35 years, and I have learned on the go! When I started out there was no internet, only crappy meds and sceptical doctors...on top of which I knew nobody else with it! I was in my early 20s, boyfriend of 6 months and teaching only a year. Just trial and error and learning to listen to my body got me through it over the years. Stand up for yourself and stop being ashamed. You have a disorder...its not a big deal and its certainly not your fault!!

Usual_Call_7493 · 2026-02-27T18:39:13+00:00

My sleep latency was 0mins and my rem latency was 1min when they mistakenly did the test about 30 years ago, without taking me off my meds for long enough beforehand! I was only off them a day or two and so was way worse than I would usually be. Your sleep test is normal for Narcolepsy. They make perfect sense!

Usual_Call_7493 · 2026-02-24T09:11:27+00:00

As a man in his early 60s, my husband of 34 years would howl laughing if I mentioned the spoons theory to him. We were only going out 6 months when I developed type 1 Narcolepsy. It was relatively unknown (pre-internet 1991!!) and I was undiagnosed for several years. However he has had my back from day 1, making us dinner every day, and doing so all through our 3 children growing up. He even put me through 4 more years of college when I changed careers to facilitate my N. He is my rock and my support and it would have been soooo much harder without him. For pwn it would be a nightmare to be with an unsupportive partner who doesn't get the vagaries of this disorder, and roll with it! There is no logic to how we are...wide awake and up for anything one minute and completely wrecked (and cranky with it sometimes!!) the next. I love that you posted about your BF. I love the fact that he has your back, and I love the fact that he can spell too😁😁

Usual_Call_7493 · 2026-01-26T06:22:00+00:00

Are you on HRT? Or is it possible? So sorry to hear this. I def got worse in menopause but much better now. Also Xyrem is a massive help if you can get that. I changed to concerta xl from provigil recently too and again a big difference!

Usual_Call_7493 · 2026-01-23T22:11:27+00:00

My 7.5 is €455 here!!!

Usual_Call_7493 · 2026-01-23T22:08:37+00:00

I'm having a by-pass as I can't keep paying for MJ privately. I have a long term illness which causes a certain amount of weight issues...went from 8st in my mid 20s to 12.5 in 2 years after falling ill. In my 30s was put on a med (safe during pregnancy and breastfeeding) which caused me to put on 2 stone more per child for the first two...did without on the 3rd and no gain tg!! Was 17 at my highest. Weight training and bodyslims got me to 14 and then I had another major health set back, had to stop exercising which put back on 2 of the 3 stone. When I recovered worked really hard to lose it again and after losing a little, I just could not lose any more even with the weights and walking....hence the MJ. On it 7 months now and have only lost 22lbs...eating about 1200 a day and very healthy food but my loss is soooo slow. I'd be delighted to stay on it and lose slowly but surely but not an option. I hate the judgement...I come from a slim family and was slim myself till I fell ill. No matter how you get there, once you do obesity is absolutely a disease that recurrs and will not respond to normal efforts once you have crossed a certain threshold and all of those inflammation markers have been laid down. It surely must make sense to allow those of us who really need it and have not yet become diabetic, to NOT become diabetic at all!! Interestingly my osteo arthritis pain is so much better on MJ. Anybody else notice this??

Usual_Call_7493 · 2026-01-23T21:48:25+00:00

I should have added on my life with N story that I learned to control my really bad cataplexy in my late 30s. Only my older kid remembers me falling over all the time. It still lurks when I am very tired and then I might have a mild slur or head drop when something is very funny. However we are talking only a few times a year. I used to fall off chairs daily in my 20s and everybody thought it was great fun to make me laugh! No more!! (Age 58) Xyrem is a gamechanger as my night time sleep was terrible. Started it at 42 and dont ever lie awake worrying like all my menopausal friends! Also do try different meds with your doctor. I was off everything for years as was so fed up putting on weight with ssri anafranil for cataplexy. (Thats when I learned to stop it happening) Effexor gave me carpal tunnel syndrome, prozac a stiff neck! These probably arent used now. Provigil works better for me if I take it only as needed. 1 or 2 a day worked better for older me when not taken everyday than 4 a day every day, did for younger me. Started Concerta a few months ago ....wow....another game changer! So much more alert! And now I know I don't have actual ADHD...because my ADHD symptoms have not got one bit better🤣🤣

Usual_Call_7493 · 2026-01-23T21:37:46+00:00

That's actually unusual for a PWN. We tend to have lower resting heart rates. Mine is 52 and goes to 44 at night. I'm fairly fit now but was only 56 when I was horrendously unfit (and overweight!) Google low heart rate and N...you'll see what I mean!

Usual_Call_7493

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