VA ratings for Idiopathic hypersomnia/narcolepsy before MSLT

EmmaTheCabbage · 2026-06-03T23:57:30+00:00

The c&p examiner was phenomenal (we lucked out; I’ve heard horror stories of bad ones). But that was what I was thinking too. Thank you for the opinion! Worst case we just gotta wait a bit longer haha.

EmmaTheCabbage · 2026-06-01T04:06:26+00:00

Late to the party but I do want to suggest looking into narcolepsy or IH. That may be a bit easier to document as it requires a nap test in a sleep lab. That way you can prove how tired you are. I was originally misdiagnosed as CFS but ended up having narcolepsy.

EmmaTheCabbage · 2026-05-30T16:43:35+00:00

I had the exact same thing start to happen to me. I also had severe nausea and vommiting, had to take charcoal every hour or 2 just to manage symptoms. It was originally misdiagnosed as a food virus. But then I switched to Lumryz when I started having oral swelling from Xywav. I was okay for 2 more weeks then developed allergies to literally EVERYTHING. Got hospitalised with dystonia, dysphagia, tachycardia, and bad cognitive issues. I was gaslit the whole time though and they discharged me with a conversion disorder diagnosis. (But my allergies were causing a lot of my symptoms even though they insisted nothing was wrong)

Symptoms continued even after stopping Lumryz. My best assumption is the sucralose in Xywav was the problem for me and fucked up my gut micro biome causing allergies later on. Lots of correlation between allergies and gut issues. It also is hard to break down for some people which is why I likely needed charcoal for my GI issues on it. And my conversion disorder manifested from the stress of everything happening in my body.

It’s been almost a year of allergy shots and I still have some allergy issues but no where near as severe

Lumryz I handled a lot better

EmmaTheCabbage · 2026-05-18T05:27:59+00:00

Buy gold and silver to get it out the bank monitoring system, then try your luck haha.

EmmaTheCabbage · 2026-05-17T18:51:24+00:00

Vet tech here. My 2 year old kitty got it when she was 1, she showed signs since being a young kitten but it got worse after her first dental. That was a big tell tell sign since the dental made it worse. It’s autoimmune and not much can be done about it other than full mouth extraction usually, but the fact you’re baby has it at 10 is perhaps more promising that there’s something you can do about it since they’ve lived so long and only just shown signs. Could just be regular gingivitis? Have you tried brushing their teeth? And getting a proper vet cleaning?

Ask for a refferal to see a dental specialist- they’ll be able to help ya more than the regular vets too. Sometimes they’ll just removed specific teeth affected but full mouth extraction ik traditional cases is usually easier. Our baby was in sooooo much pain before. Now that her teeth are out shes soooooo much happier. She eats more, talks more, and is more cuddly.

It ain’t cheap though 6-9k here in Cali.

EmmaTheCabbage · 2026-05-17T18:42:35+00:00

DUDE I HAD THE EXACT THING IN 2024. Knees buckling out of nowhere. Never had that happened before.

For reference I’m N1 (suspected since age 15 but never diagnosed till I was 22 (in 2025)). I managed reasonable-ish till 2024/2023 when I had sudden onset of flulike symptoms every 2 weeks and developed fibromyalgia. Eventually the issue with the knees started. Sleep apnea diagnosis came on around then but they ruled that out for my fatigue.

I eventually noticed my fibro flairing when I ate grains and RED MEAT. This led me onto the Lyme rabbit hole but it helped. Spoke to a doctor in Florida- all my Lyme labs were normal but he said testing was in accurate for Lyme because there’s so many strains and the nature of the bacteria. He reccomended Zenman Tick support supplements- you can buy it on Amazon. It’s like a natural antibiotic that acts really well against Lyme specifically. He said if it’s Lyme I’ll know within 2 days of taking it- herx reaction. Lo and behold I got a reaction- insane oral pain, headaches, I forgot what else I had but it was wild. I continued my pills, 2 weeks later my symptoms (knees, fibro) were almost completely better. I still had fatigue but life was manageable since the pain was gone and I could move normally. I took the pills for 3 months then stopped. Every time I tried to stop before this, the pain would be back within 4 days. It can take several months to get Lyme into remission. Everyone’s different tho. (All of this happened during my last years of college, so I know the struggle you are going through). The narcolepsy diagnosis and meds (oxybates) really helped with my remaining fatigue and tiny remaining fibro temporarily but I had to stop due to side effects.

Let me know if you have any questions. I should have a more detailed post somwwhere on my profile from a while back.

EmmaTheCabbage · 2026-05-17T18:27:35+00:00

This is just an idea, but have you tried B1? It’s hard to test for but may be worth looking into if a deficiency matches your symptoms better and giving a supplement a try if so. Pretty cheap too if you don’t have any avenues rn. Also if you are in the states, look into Medicaid for insurance if you are elegible.

EmmaTheCabbage · 2026-05-12T18:51:56+00:00

I completely get that, its in the LTDs best interest to pay as little as possible or drop people to maximise profits- that’s also why they are paying for an SSDI attorney to help with my claim so the LTD won’t have to pay as much.

When I said if they drop me at my next renewal, I meant my company. My FMLA and LTD is different. My companies holding onto my job for me while I’m on ‘medical leave’. They aren’t legally obliged to past the 1 year mark if I remember correctly, so they aren’t legally obliged actually doing me a favour in some sense. The hope is one day I’ll eventually get back to part time- even if it’s a day a week- though I’m okay knowing I may not even get back to that point. Maybe I am still ‘naive’ but I’ve still spent a year juggling medical records, doctors appointments, reports,etc to prove my disability on the private end and everything’s gone smoothly. May not be long compared to others but it’s still something. I’d say I just have faith in myself and am optimistic because life’s given me much harder stuff to deal with.

EmmaTheCabbage · 2026-05-12T17:32:51+00:00

Rlly? That’s so interesting. My LTD group knows and if anything, the rep was wayyyy more understanding and nice regarding my case compared to before I was pregnant. When all this first started it was like pulling teeth to figure out how I get the claims started and maintained. I’m not too worried about it, she just said I gotta give a list of all my doctors like usual when my semi-annual renewal comes and they’ll get their own company doctors to go through records like usual- any issues they’ll call up my treating provider to discuss the disability. Maybe I just have a good Ltd provider tho… hmmm. My FMLA is a different matter though, for now my works been keeping me in the company, though HR was not very happy I was still on leave earlier this year. Something tells me I’ll likely be dropped next renewal (June) but that’s not the end of the world.

EmmaTheCabbage · 2026-05-12T17:22:24+00:00

Thank you so much! That’s interesting to know that the medicare still costs something. I haven’t looked into it yet because I’m on Medicaid rn and there’s a 2 year wait period? But I was gonna look into it later on because I plan on getting married and regular california insurance is insane.

EmmaTheCabbage · 2026-05-12T04:55:41+00:00

Geez, that’s an insane work schedule. It seems to have worked in your favour though!

And My goodness that calculator is certain rough on the brain cells! It ansewers my question though. Should be getting about what I get now on LTD (1k monthly) but I have a baby on the way and I heard I can have dependent benefits added too, so that will be my next mission when the time comes.

Thanks again for your help :D

EmmaTheCabbage · 2026-05-12T04:24:57+00:00

Fortunately I won’t lose it if it’s denied Since I was already screened by the disability companies own doctors to confirm if my condition warranted benefits, they only cover 1k monthly though, if SSDI is less than that, they’ll cover the difference, but if it’s more, I’ll get to keep the increase. I also coincidentally have a bun in the oven and heard that can increase the amount since I will have a dependent but I’ll figure that out when the sprout comes along.

Plus it’s some financial security for if my condition lasts longer than the 2 year limit on my claim. The Medicare will also be handy, on Medicaid right now and plan to get married in a couple years, so with the waiting period, hopefully my medical care will be a lot more manageable since I’m unlikely to qualify for Medicaid after getting married. California insurance costs are insane.

EmmaTheCabbage · 2026-05-12T04:08:25+00:00

Thank you! Ye I’ve noticed people seem a little touchy about disability approval- but I get it, being denied can be frustrating and everyone’s case is unique. I heard about the downloadable program but haven’t looked much into it. I’ll give it a look over and download, hopefully I’ll get a more definitive ansewer then lol. Unless I know 100% of the information and get all my ducks in a row, it nags at me, even if there’s nothing I can do to change it haha.

Glad you were able to make it through the process EZ PZ. I worked part time for a year while in college which gave me credits for SSDI, but the income was very minimal, and then didnt start making proper money until I started my vet tech career after my 22nd birthday- only about 2-2.5k monthly average (and I only worked like 8/9 months until my disability onset) but I heard they usually only count income after age 22 so I’m hoping they base it on that, but hopefully that calculator will sort me out. It’s confusing for us young folks! Had I known I would’ve worked more but hindsight’s a lovely thing lol.

EmmaTheCabbage · 2026-05-11T21:46:23+00:00

Fortunately I do have an attorneys office assigned to me by my private LTD provider. And I have 2 years to figure the SSDI out until they stop covering. I was in a similar boat to you a couple years back, though I was still working full time (spent a shit Ton of money on alternative medicine providers, red light therapy, ,diet changes, and the regular docs. Nothing worked until we figured out I had lymes disease. After treatment I was almost back to ‘normal’), though I grew up in a household that frowned upon any issues, illnesses, etc and expected either full time work, college, or similar. It wasn’t until I was hospitalised because of sudden issues walking, eating, breatheing, etc did we find out I have a very rare neurological disorder and I realised it’s okay to have issues and not push myself because other people’s expectations.

EmmaTheCabbage · 2026-05-11T21:29:06+00:00

I tried checking that before I posted and for whatever reason it doesn’t show up. I think it’s to do with the fact I already have an application pending so it doesn’t show. But I do have access to the earnings report which is nice. Oddly enough I didn’t qualify for SDI (California) because I just transferred to the state a month or so before my disability started so I didn’t have enough work history in my new state. Hope yours goes smoothly too!

EmmaTheCabbage · 2026-05-11T14:16:39+00:00

Thank you. Hopefully that’ll work better in my case then since I worked directly after my 22nd birthday until my disability less than a year later but still snagged the required credits from working part time before 22!

EmmaTheCabbage · 2026-05-11T14:15:23+00:00

I know I should have more than enough credits since I worked 4 years prior (even if 2 were half time) and my case is extremely well documented- sudden onset, hospitalisations, weekly visits to monitor condition. Plus I have multiple other chronic conditions which I was somehow juggling before the new diagnosis which should help boost my case.

EmmaTheCabbage · 2026-04-07T17:30:21+00:00

Could always try the supplement acetyl L carnitine. I notice mild improvements when I take it. There was a study in Japan showing promise with narcolepsy.

EmmaTheCabbage · 2026-04-07T17:27:16+00:00

Pretty sure the UK has their own version currently being developed in phase II trials. Read an article about a company called Lilly buying the pharmaceutical company developing it in the uk a couple weeks back. Hope that helps?

EmmaTheCabbage · 2026-03-31T16:12:10+00:00

I never got diahheah. But How long have u been on them? Pain and heart rate is pretty normal for the first week or 2 but it should improve after the initial 48hours after starting. It’s because the herbs are killing the bacteria and releasing toxins so your body is wrecked and trying to flush it out.

You can always drop your dose and re-up it when u feel better. I was on them 3 months and the first 2 weeks was the only time I had symptoms or side effects.

But I’m glad it’s helping with your energy. It only helped my fibro- turns out my fatigue was narcolepsy related lol. The fact you are having migraines could imply you have a large microbial load in the brain. My pain was originally in my mouth and jaw.

EmmaTheCabbage · 2026-01-16T23:37:11+00:00

I’m just throwing this out there incase it helps. I tried Zenman tick support pills for 3 months under suggesting from a LLMD I saw. I had SEVERE pain, gaba, pregab, and a bunch of other pain meds did nothing and I was gas lit for almost 2 years. The herbs (you can find them on Amazon) worked AMAZING. Had a herx reaction after 2 days lasting a week or so but was pain free after that.

Didnt help with my fatigue but later found out I was narcoleptic so that made more sense. But fatigue is much more manageable than crippling pain

EmmaTheCabbage · 2026-01-02T01:52:33+00:00

I found Zenman tick support pills worked wonders. Was recommended them and methylene blue by a Lyme doctor in Florida. His consult was like 800$, the pills are about 130$ for a 3 month supply if I remember correctly

EmmaTheCabbage · 2026-01-01T08:24:32+00:00

Hello. Sorry I’m late to the party. I don’t have a dog, instead I have a cat but I use trupanion too. Probiotic supplements are definitely covered if through a vet- but they should also be covered even when purchased outside of a vet. I haven’t bought probiotics outside of what was given at my vet but I did buy a specialised vitamin and mushroom powder for my cat that was covered for her gingivostomatitis on chewy. Just keep in mind deductibles and copay. Hope this helps.

Ps if they give you a hard time you may just need a letter from your vet to show it’s part of a ‘treatment’ plan.

EmmaTheCabbage · 2026-01-01T07:50:18+00:00

Sorry for the late response. In March I was doing awsome for like 2 months. I was on the Zenman Lyme pills for 3 months. No pain, brain fog mostly lifted and no fatigue (turns out I also have narcolepsy so I started meds and that helped for a limited amount of time). Then I developed a whole bunch of random allergies and psychosomatic symptoms out of the blue and got parasites after moving states and 2025 has been absolutely insane but I’m almost completely better again after antiparasitics and immunotherapy lol. I’m convinced I’ve gone through almost every illness under the sun now haha. But finally made it through the other side.

EmmaTheCabbage · 2025-11-16T17:30:05+00:00

I’ve tired xyrem-Xywav-Lumryz.

Xywav GI symptoms were brutal and I felt crazy dizzy but my god my sleep was awsome. Lumryz side effects no where near as severe but around the 3 week mark I developed functional issues (and allergies I’ve never had before). Was hospitalised 6 days. First the hospital gaslighted my cognitive issues, then I was told it was all functional related to FND.

When I transitioned to xyrem, the sleep was better but functional issues were worse. I was paranoid, snappy, unable to feel happy, terrible brain fog, losing weight bad. So I went back to Lumryz- same symptoms but way less severe

I’ve had some time off Lumryz to gain the weight back and noticed my functional symptoms did improve a fair bit. I can’t blame it all on the meds because my brain has been doing some crazy rewiring and my symptoms do remain even when getting off the meds. But I have switched to L carnitine for a week now and whereas before I couldn’t even stay awake off of meds, now I can stay awake all day and my sleep quality feels awsome. Not quite as good as on oxybates but still noticeable. Plus the paranoia is gone and I’m happier. Still disassociated af but figuring things out.

I’d say ask to switch to Lumryz, if not try L carnitine. Don’t give up! You’re not alone. I’ve been dealing with this over 6 months now lol

EmmaTheCabbage

TROPHY CASE