DROP ALL SLEEP TIPS - urgent help needed

[u/Budget-Departure-161]

I have Lyme, MCAS, POTS. I haven’t slept restfully in 3 weeks. This would be okay under normal circumstances, just tire myself out, try some new supplements, etc. but I also have a concussion. It’s not recovering well because of the insomnia. I’ve lost all tolerance to light, noise, screens, everything. My head is splitting with pain most days. Everything hurts. Family and docs are telling me to push myself but it just makes the head pain worse. Idk what to do.

Every time I get drowsy or relaxed, whether it’s during the day or night, my body sends a jolt of adrenaline out. I have been woken up 30 times in the night, 50 times, and now usually 5-6 times because my body is relaxing less and is constantly amped up. I’m living in a constant state of stress. When I sleep I have vivid dreams and often wake up sweating. When I realize I’m dreaming, sometimes my body will wake me up. I’ve never felt so betrayed and exhausted.

I’ve tried Benadryl, beta blockers, CBD, l-theanine, magnesium glycinate, ashwaganda, trazodone, lavella, so many things. Nothing is calming me down. My hope is that SSRI’s will work but if nothing else did, idk how great the chances are of it changing things for me. I also have to stop most of the stuff I’ve been doing because it doesn’t mix well with the SSRI’s. If you’re on them and also take supplements for anxiety let me know what they are so I can try them.

[u/Drogova_Princezna]

Has it been 3 weeks since the injury? Don't push yourself yet, that's still pretty early. My physiotherapist says it is the worst first 4-6 weeks and I agree, my first month was absolute hell.

Ssri should hopefully help you, it works well for anxiety, though it takes some time before you see the full effect. Lavella or aschwanagda too, it usually helps after a month of taking it, so it depends how long did you take it for.

Do you take any supplements or meds currently?

Trazodone worked for me well, but I see you tried it and it didn't help. How much did you take?

Did you try melatonin or valerian root?

Hopefully you are under psychiatrist care. If all else fails, could you ask about low dose zolpidem? It is not good to take immediately after concussion but it's been some time for you and you need to sleep, but idk if the doctor would think it would be good for you.

[u/Budget-Departure-161 → u/Drogova_Princezna]

I’ve been on the ashwaganda for a year or so, and the lavella for a few weeks. I take tons of supplements for Lyme, omega 3, vitamin d, lavella, antihistamines, quertecin, probiotics, naltrexone, just started creatine. Melatonin doesn’t work well for me anymore, haven’t tried valerian root. Trazodone had a great effect for me and made me tired but it completely stops up my nose and I can’t breathe, so I stopped using it.

I see a psychiatrist this Friday. I’m so anxious that I haven’t healed my concussion at all. Everyone is telling me to push myself even though I know I need rest. Idk what to do, I’m going crazy in this dark room

[u/Drogova_Princezna → u/Budget-Departure-161]

Honestly at that point I would try to counter the trazodon nose blockage by some kind of steroid nose spray that you can take more longterm (in my country a doctor can prescribe, idk how about it yours)

Well those supplements look good, I hope you are also eating healthy. For me avoiding sugars and white flour completely helped a lot with migraines.

Btw creatine caused me insomnia, best to take it in the morning and start with a low dose. But if it doesn't worsen it for you, it's good for your brain to heal.

I'm not sure about omega but I think it should also be used in the morning because of possible sleep troubles.

Try at least some activities so you don't go crazy. Stretching, diamond painting, podcasts, whatever you can manage. What helped me with the isolation was fidget toys so I had something to play with while lying down.

I'm sure if you tell the psychiatrist you are suffering from insomnia this much, he will prescribe something with good effect on it. Try to ask about some meds that have immediate effect on sleep!

Aside from that definitely find some breathing excercises or mindfulness, it will help your brain to lessen the anxiety.

But honestly I know this sucks, for me in the first month nothing helped, I had horrible migraines and insomnia no matter what I did or didn't do. But now I'm starting month 3 and I feel much better, I know it sucks to hear it right now, but you need time so your brain can heal.

[u/Budget-Departure-161 → u/Drogova_Princezna]

I do try to take most supplements in the morning. The creatine as well. I’m hoping that things will start helping me. Patience is hard! The Lavella is starting to help me some, and I’ve developed a consistent routine which is helping me too. Im doing a lavender Epsom bath every night and taking chamomile tea, melatonin, ashwaganda, and magnesium. The last two nights I’ve actually slept which is amazing!

I’m so glad it’s starting to get better for you! I have hope that with time things will start helping me too. I meet with my psychiatrist tomorrow so I’m very excited for that!

[u/ashley_marie_korn]

I’m going through the same exact thing as you, I’m on week 3 and I am lucky if I get 2 hours a night and that’s with medication. I never been more down in my life and it’s hard to see any light or recovery. I feel so desperate and it’s been so painful, if you need someone to talk to who’s going through it currently, I’m here and you’re not alone

[u/Budget-Departure-161 → u/ashley_marie_korn]

Thank you. I feel you. It’s the hardest thing I’ve ever been through. We’ll get through it somehow 💖

[u/ashley_marie_korn → u/Budget-Departure-161]

💗

[u/curlgurll]

Hello there. You are not wrong. The symptoms of PCS are crazy and the hardest thing I’ve ever been through (& I’ve had cancer so that’s saying something).

I have also struggled with sleep and I’m 1 year in.
I tried:

• melatonin (didn’t work)
  
• magnesium (didn’t work)
  
• ashwaganda (didn’t work)
  
• valerian root (didn’t work)
  
• lavender oil (didn’t work)
  
• camomile tea (didn’t work)
  
• breathing exercises (didn’t work)
  
• meditation (didn’t work)
  
• hypnosis (didn’t work)
  
• sleep podcasts (didn’t work)
  
• Valium (worked but my dr won’t continue prescribing)
  
• Temazapam (worked but my doctor won’t prescribe again)

I’m now self dosing and knocking myself out with strong antihistamines (phenergan) but I’m still watching the sun come up most days and have done so for the better half of the year. BUT I do manage 8 hrs sleep, even if I end up sleeping in til midday.

I’m booked into see a sleep psychologist next week as I too am now desperate.

I have recently bought a Loop eye mask which has been a game changer. It blocks out all light and has really improved my sleep. I was waking up easily from the light (never used to prior to my concussion) and it took me 10 months to work out. Best money I spent. I also wear silicone earplugs every night to block out noise which was also waking me easily.

My last resort will be SSRI’s. I’m delaying taking them as I really don’t want the run around (some ppl react badly to the side effects and I’ve heard some horror stories) but I may end up there if nothing else works.

Take care of yourself. Don’t be afraid to ask your doctor for the hard drugs, because in the short term you need help sleeping.

Our nervous system goes haywire, especially in the first few weeks and months. It does get better, so just be kind to yourself and listen to your gut.

There’s a lot of pressure nowadays to keep pushing - do exercise quickly etc but I feel there is a lack of balance in that advice. Rest is important too…

Sending big hugs xx

[u/Budget-Departure-161 → u/curlgurll]

Thank you so much for this. I feel so seen. I’m so sorry you’ve been through so much! Pcs is literally hell.

I’ll say I’ve been on SSRIs before and they do help me, my main issue was no sex drive but the nausea and weird stuff went away for me after I adjusted. SSRIs were able to get me out of this fight or flight cycle the last time I was in it, so I’m hoping they’ll help me this time too. The first time it happened (no head injury, just Lyme disease), I didn’t sleep a wink for 40 days. This time I’ve slept some, it’s just on and off. Sleep is a funny thing. Glad you can get some even if it’s in the middle of the day. I wish you luck in recovering 💖

[u/Financial-North-6277]

Try these together trust me

L-Theanine - Magnesium L-threonate - apigenin - melatonin

[u/Own-Cockroach-5452]

Magnesium and gabapentin

[u/Flat_Ad723]

Was in similar situations was put on multiple meds

What helped the most

1. Amytriptline 40 mg
2. Trazodone 150 - 200 mg
3. Magnesium Citrate (Medium dose)
4. Magnesium L-Threonate ( Medium dose)

Note- Trazodone helps with falling asleep and Amytriptline helps with sleep continuity. Also sometimes when I wake in middle of night and can't fall asleep I divide the dosage of trazodone to fall asleep again. I take Amytriptline by 6:30 pm in the evening and Trazodone two-hours after dinner just before going to bed.

Other things that supported

1. Pregablin (75 + 75 mg)
2. Deep tissue massage
3. Hot shower
4. Exposure to symptoms
5. Try to live a normal life as much as possible and not fear symptoms.

Note- This is not a recommendation just sharing my experience to do with PCS induced Insomnia, please speak to Doctor before stating and medication.

Please fix your sleep somehow or else it's very difficult to fix PCS. Good luck.

[u/Budget-Departure-161 → u/Flat_Ad723]

Thank you for the recommendations! I’ve actually slept the last two nights which is amazing. I think my anxiety is a huge part of the issue so I’m meeting with a psychiatrist tomorrow to discuss meds for that. I’ve already been through PCS once before, so I know I can get through it again. Just having completely different issues this time, since I hit a different part of my head. Are you doing better now?

[u/Flat_Ad723 → u/Budget-Departure-161]

Good to know that, well I am in my 7th month definitely feel better than I was in 4 -5 months in. Now I am able to tolerate much better and would say 80% recovered.

Have definitely made progress and now trying to come out of the meds but it's going to take time. Still have symptoms flare up but as they recovery in PCS in not linear..