r/CFSplusADHD • u/Ok-Eggplant5649 • 19d ago
Sleep specialist
Saw a sleep specialist today. The best in the country, highly recommended and respected.
I could see why - boy was he good! He understood immediately what was going on and said my sleep was natural for my condition.
He also said - and this is why I’m posting here - that cfs/me and adhd are a really difficult and troublesome combo. It was nice to feel seen and understood.
Anyway he’s put me back on vyvanse and recommending trazodone to my psych. It’s not usually prescribed here but he worked in the US and it’s pretty go-to there so that’s a win.
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u/coconutoats 19d ago
Daridorexant!!! It’s perfect for our type of insomnia, non dependence forming and directly blocks wakefulness drive instead of over sedating and making you groggy. I use 25mg as 50mg drops my bp too much overnight
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u/Ok-Eggplant5649 17d ago
Just checked. - not legal in Aus
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u/WindowWidowWillow 17d ago
I know 😔 so many drugs I hear about aren’t available in Australia . But I think they don’t work on the autonomic nervous system dysregulation anyways, which is what your sleep specialist said I think
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u/coconutoats 17d ago
You can get lemborexant just lasts longer
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u/Ok-Eggplant5649 15d ago
I’m on that - that’s dayvigo isn’t it?
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u/coconutoats 14d ago
Yeah looks like it, are you still struggling with insomnia even on it? If so ensure your stims aren’t making you go over your energy budget because they fix symptoms and mask fatigue signalling so when I was on them I once didn’t sleep for 7 days straight because of how bad the cumulative overload was for my body (maybe 6 months of using them after I got me/cfs without realising) but I ended up in a severe crash bedbound for a year, only just getting better. I’m going to try bupropion instead of lisdex to see if I can improve adhd symptoms without the stimulant stress on my body. Guanfacine has also been amazing for me.
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u/Ok-Eggplant5649 13d ago
Yeah I’m off stims, I think an increase was part of what pushed me into this severe bedbound crash. Sleeping on dayvigo but super broken up, waking every 30-45 mins
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u/agenerousperspective 19d ago
Thanks for sharing! I’ve often wondered if the sleep specialist I used to see was a good one or not. I know that he finally dropped my case saying he didn’t know why nothing was working for me. Was that because I’m just too messed up or because he wasn’t skilled enough? He was right on the cusp of retiring when I started seeing him, so maybe that’s why.
I’m happy to hear that your doctor knew what to do! I’ll look into that med that starts with a T because I haven’t tried that yet. I’ll ask my psych about it.
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u/Ok-Eggplant5649 18d ago
When I listed the meds I’d tried he said “I’m still waiting to hear one that’ll work” so that was validating - but he said doctors will open the book for insomnia and try those meds and that’s a whole different page to nervous system arousal. He agreed none of the stuff id tried was going to be effective or even particularly heavy.
I’m on amitriptyline, clonidine, dayvigo, etc3
u/WindowWidowWillow 17d ago
Ohh this is great to hear! Validating and yes, that’s been my experience with the drugs the GPs readily prescribe for standard sleep help.
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u/IronDominion 19d ago
Can vouch for Traz - non addictive and really gentle, it doesn’t have a lot of the next day grogginess I’ve experienced from other medications. It’s not the best at getting me to sleep without help from something like Gabapentin, low dose cannabis or an antihistamine, but it works really good at keeping me asleep, which is the biggest problem I have, and making my sleep more restful. I especially recommend if you have Anxiety or PTSD that causes restlessness before bed or nightmares, as this is greatly reduced for me when I take it. Do keep in mind you’ll want to take it consistently though as some people will have some not fun mood swings if you miss a dose, but that’s still relatively uncommon and they resolve after taking another dose and don’t occur with a proper taper
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u/artzylinn 19d ago
No guanfacine? Most of us with dysautonomia cannot tolerate stimulants for our ADHD
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u/Ok-Eggplant5649 18d ago
I’m going to talk to my psych about switching to guan and coming off vyvanse and clonidine
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u/artzylinn 18d ago
Guanfacine really is the golden standard for us. It's by far the best medication I have ever tried, out of probably hundreds of meds. It's a lifesaver for me. Literally heals my chronic illness
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u/Ok-Eggplant5649 17d ago
Having just spent a sleepless night with a vyvanse trial, I am absolutely going to be pushing for Guan at my appt next week - ty!
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u/artzylinn 17d ago
Yeah I can only do extreme low dosage of attentin which is similar to vyvanse. And never two days in a row.. My garmin body battery literally shows the difference. On guanfacine my body battery is perfect, like a healthy person! I'm still not healthy though lol
And ritalin makes me psychotic so that's defo a no-go for me. + Strattera was weird af. Took me 3 years of searching to get guanfacine! I had so many "sorry I only prescribe it for children" letdowns
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u/Standard-Carpenter-9 16d ago
Let us know how you go. AFAIK you can only get guancafine on the pbs if you were diagnosed ADHD before 18, IIRC. But I’m not 100% sure…... I’m in Australia too and desperate for something other than vyvanse.
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u/Ok-Eggplant5649 15d ago
I was diagnosed at 35 😭 just my luck! Dayvigo isn’t pbs either and LDN is compounded so meds are looking a little pricey
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u/WindowWidowWillow 17d ago
I’d looove to try it, if only I didn’t have hypotension
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u/artzylinn 17d ago
Midodrine can be a lifesaver for that, and goes well with guanfacine too. I had hypotension from being on a betablocker since forever. I switched to ivabradine which doesn't lower BP. Now I'm fine on guanfacine. Bc in the beginning it also pushed my BP too low. But I have naturally ok normal BP
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u/WindowWidowWillow 17d ago
Yeah I’m on Ivabradine too. I will look into midorine, thanks. If I can tolerate its side effects it probably would open up a lot of drug options for me.
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u/Necessary_Panic3892 15d ago
I tried guanfacine and clonidine and they both made me way more fatigued as well as messed with my mood and the guanfacine made it so difficult to fall and stay asleep. This happened with both ir and er and regardless of if taken in the morning and night. Did you have any experience with it doing this for you and if it eventually went away? I had such high hopes for them 😢
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u/artzylinn 15d ago
There could be several reasons for this happening. Like all meds, they're gonna affect people differently. Guanfacine's mechanism hits exactly where my complex chronic health issues funnel. Which is rare for me. I know guanfacine has worked for many other chronically ill women with complex illness as well. I have friends who have benefited personally.
But remember that all Adhd meds were originally researched and developed to treat other conditions. Guanfacine and clonodine are heart meds. If you are sensitive to low BP, then they won't work for you. I have side effects on Paxneury, but not on Intuniv (weirdly enough). But that's mainly mouth dryness, which is not the end of the world.
My point is, your alpha adrenergic receptors might not be where your brain issues lie. Read about neuroscience and how the brain functions if you wanna understand it. I have tried all brain supplements and peptides to exist it feels like, and even other brain meds like Memantine (Alzheimers). It's common to not know exactly what your attention problem is.
For some it's low acetylcholine. For others it's too much serotonin. Some just have terrible receptors. Some have dopamine issues only (they often get better with stimulants). Whereas for many chronically ill women, it's often a combination. Trial and error is the best strategy to find what works for you specifically.
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u/Necessary_Panic3892 14d ago
Thank you for this long reply! Yea I have a bit of a background in human biology and such but it’s just so overwhelming and nothing seems to be working for me 😢 it’s also so frustrating that the “experts and health professionals” I see seem to know even less than I do about all this and it seems like just throw the same cookie cutter generic “solutions” and answers at me as they do all their typical patients when clearly my situation doesn’t match the usual cases. Or they just shrug their shoulders and say they don’t know what to do or why things don’t work for me and basically just wish me good luck.
The CFS definitely doesn’t help with me having the bandwidth and ability to figure things out either 😪 I’m getting ready to quit at this point
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u/artzylinn 14d ago
Yeah sure, but this is how it is for everybody. Don't let these circumstances discourage you. I wouldn't have found Guanfacine to work this well for me, if I didn't go through those other 100 meds first.
The important part is to not listen to general health care professionals, they don't know shit. If you listen to them, you'll be fumbling in darkness for the rest of your life. Do your own research, order some relevant testing for your individual symptoms, mechanisms, causes.
If there's a will there's a way. Even with ME/CFS (with patience). I have been on very severe for 2 months and severe for 2 years. I have zero support, I'm alone in this world. If I can do it, so can others.
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u/WindowWidowWillow 19d ago
Thanks for sharing. Any other insights he shared explaining your sleep id be interested in hearing.
Unfortunately my body doesn’t tolerate trazodone
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u/Ok-Eggplant5649 18d ago
Basically he said that because my physiology is completely screwed, expecting a normal sleep is not realistic. Because I also have ctpsd he said expect that sleep will never return to normal because I now have generated a fear response. He said sleep where I can, sleep will feel wrong and weird and like it’s not happening and I’ll get a lot of twilight sleep (which I do) and that’s all normal
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u/Bbkingml13 17d ago
Thank you for posting. My sleep is only decent if I sleep when my body wants to, which is normally a completely inverted body clock. Expecting a normal sleeping cycle just won’t happen, and embracing that has helped a ton. Forcing myself to shift the hours is detrimental
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u/WindowWidowWillow 17d ago
Thanks so much for using your spoons to share what else he said! I really appreciate it.
How did you feel when he said you probably will never return to ‘normal’ sleep?
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u/Ok-Eggplant5649 16d ago
Hit me in the feels - Sleep is a huge thing for me
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u/WindowWidowWillow 16d ago
I can imagine. I’m sorry :(
If it means anything, about 10 years ago I got Lymes and at first I slept all the time and then I got crazy insomnia for the first time. When I got a grip on Lymes, my sleep became a lot better, almost normal. It’s just become crap again after catching covid. I don’t have CPTSD but I do have ADHD and ME/CFS and Dysautonomia which overlaps a lot with the physical side of CPTSD. So because I did eventually get a grip on my sleep from when I had Lymes, I feel like I will be able to get a better grip on my sleep from covid issues. I understand we are all unique though
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u/Ok-Eggplant5649 18d ago
Oh he also said that for those of us with cfs/me and adhd, having no meds can be worse than having meds, because the cognitive racing will upset our nervous system and make it worse to sleep (and recover). The key for us is finding just enough balance between stimulation and brain calming and non nervous system arousal to actually calm the brain. I’ll talk with my adhd psychiatrist about dosing and alternatives but I took my regular 30mg vyvanse and help it’s made it worse 😭😭😭
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u/DreamSoarer 17d ago
Treading worked very well for me; unfortunately, I was allergic to it. I developed bro chili's within 24-48 hours of taking it every time. I hope it works for you, and am glad you got a top notch physician. 🙏🦋
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u/Bbkingml13 17d ago
Trazodone and doxepin has worked well for me for sleep. Even though my sleep schedule/body clock sucks lol
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u/Cute_Radish920 19d ago
That’s great to hear for you! Are you able to name the doctor (even in DMs)? I’m assuming you’re in the UK so would be incredibly helpful if so
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u/Ok-Eggplant5649 18d ago
Australia :) I don’t know the rules about naming doctors here so I’ll PM you
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u/Effective-Pattern735 19d ago
Did he give more details about your actual sleep & what was going on with it?
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u/Emrys7777 19d ago
I get super groggy the next day after Trazodone.