u/Budget-Departure-161

Any and all are needed. I was doing great with positivity a few weeks ago and slowly fell out of it because of sleep deprivation. I know I won’t heal as quickly if I’m not positive but damn is it hard to not acknowledge the gravity of the situation

I’m sorry to post so much lol but this is a tough time for me. For reference I’m 6-7 weeks out from my injury. I know pushing is good and all but everything I try gives me a severe migraine, not a simple rise in symptoms. (Reading, playing cards, being in low light, being outside, taking a shower, eating, walking, etc.) I know total darkness isn’t the answer and I can’t even handle being in the dark anymore unless it’s bedtime. Am I just making things worse for myself and adding on recovery time or do I need to push through this pain until it doesn’t give me a severe migraine? Any advice appreciated thanks

How do you stop yourself from going here? I’m in the darkest place of my life. I’m not sleeping. I don’t see a way out. Every cell of my body is physically in pain every second of each day and night since I don’t sleep much. I’m always nauseous. My heart is racing. I have comorbid diseases that make it nearly impossible to recover from this… please help with any advice.

I’m seeing all the doctors, doing all the things, and my stress and anxiety is too high. My cortisol is maxed out and I’m stuck in fight or flight. I’m so upset, I’ve had psychotic episodes and I’m so tired. That’s all. Sigh. I’m too tired to do anything during the day anymore.

Hi everyone! I know this sub can be discouraging at times and the condition in general. I wanted to share that with probably 3-4 weeks of consistent and ramped up light exposure, I am now tolerating low light without pain! Yay! Sometimes it still hurts after when I take a rest but I think this is a big win for me

Just wondering!! We’re all warriors! 💖

It’s been 5 weeks since my injury. I still have zero tolerance of light, noise, and other triggers. I’ve struggled with insomnia a lot so I have pushed a lot on days I shouldn’t have. Exposure just makes me agitated and makes my head hurt more. Strangely though I can feel ok doing things, and it only starts hurting when I go lay back down. The constant rest is killing me. I end up playing cards or having lamp time or talking to my family because I’m desperate but those things hurt too :( I’m seeing a concussion clinic soon but my fear is they can’t help me when I’m in this state and I just need more and more rest

Is it possible to sustain another mild concussion from a weaker force than before? I got a concussion on June 8th from hitting my head on the back of my wall. A few weeks later, I sat down really fast, felt a jolt go up my spine, and had some of those symptoms immediately come back with a worse headache. Then about 3 weeks after that, I was riding in the car, sitting with my leg up and we went over a bump in the car. I felt the same jolt go up my spine, got a new headache on the left side, and visual spinning which is a new symptom. I know these things seem like weak forces, but are they actually reinjuries, or just a flare up of the original one?

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.

I have Lyme, Babesia, Bartonella, 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.

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.

Should I stop all herbals? Am I having a huge herx? I can’t even tell anymore because all I feel is concussion pain.

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.

An edit: I’ve tried vagus nerve stimulation, Epsom salt baths, deep breathing, mindfulness, calming music, etc, and none of it is helping either :(

Hi everyone. I made a suicidal post a few weeks ago. I just wanted to tell you all thank you for the support, kind messages, and suggestions. I haven’t been sleeping much but I have slept some. I’m getting ketamine treatments done and they’ve helped with the suicidal thoughts. I’m still here, and I plan to stay. I don’t know when the suffering will end, but I am here. 💖💖💖

Hi everyone. I’m about to ramble on about my current situation. I feel the need to do so because doctors are misleading me — they’re telling me to test my tolerance to light when I’m having severe symptoms, or telling me I have no TBI at all and it’s just a migraine.

I got hit little over two weeks ago, on June 8th. I hit the back left corner of my head on the wall getting back into bed. I feel like such an idiot for doing that. I felt confused, dazed, and sensitive to light that day. I still watched some tv and called my mom trying to figure out what to do. I went to urgent care and got a doctors excuse. The doc said I might even be better by tomorrow and wouldn’t need to skip work. Now I’ve had to quit my job because I’m not recovering. The 42 hours after I rested, maybe not enough. The third day I braved the sun and took my cat to the vet. It hurt a lot and I regret it. The fourth day I went to a few doctors appointments, and by the end of them I was reeling, dizzy, and had to shut myself in the bathroom because the sliver of light I had been tolerating from the window was too much. The fifth and sixth day I slept basically all night and all day. It’s what my body was asking for. Now, I can barely sleep at all. I’m living in complete darkness, and I’m not getting better because I can’t sleep. It’s been like a week without proper sleep.

I get these adrenaline jolts awake no matter how many times I drift off. One night I got 30 of them. How infuriating?? I’ve tried everything to sleep and still am (not all together but the list goes:) — cortisol manager, mangesium, Benadryl, beta blockers, cbd oil, hydroxyzine, trazadone, lavender Epsom salts, chamomile tea, none of it is making me drowsy or calm like it usually does. I’m wired up on adrenaline. The anxiety of not sleeping with a brain injury is only making it harder to sleep. I think I’m stuck in constant fight or flight mode right now.

My question is, and it may not matter, but am I stuck in day zero? Have I been regressing ever since pushing myself too far, and have I yet to make any recovery? If I’m still at day 0 two weeks out, I shudder to think of what recovery and post concussion syndrome will actually look like. I don’t know if I’m strong enough to bear it. I regret pushing myself a lot. I had a tbi in the past, post concussion syndrome for 10.5 months and recovered that slowly sleeping every night. Looking for advice, comfort, and suggestions. Also, what to do when everything hurts? Small lights, audiobooks, everything. (I’ve had a CT that came back clear, so I don’t have any serious complications on that end — just a lot of gaslighting from doctors unfortunately.)

I am so sorry to make a post like this. I never thought I would. I always believed I could make it through whatever this disease threw at me. I love my family, my job, and my girlfriend. I love my life, but now it’s all been taken from me. Things have taken a turn for the worst here lately. I hit my head and got a mild concussion. I rested and did the right things, it’s been almost two weeks and I still haven’t healed. Mainly because I started to get the adrenaline surges awake in the night. Thankfully I do sleep, but only from 3-5 hours each night and it’s very unrestful. I’ve tried everything for sleep. I’m so anxious. I started an SSRI. I’m so hopeless. I had post concussion syndrome for 8 months previously but that was healed sleeping every day of those 8 months. I worry there’s no way out of this if I can’t sleep. I worry I won’t ever sleep restfully again. I need support from my community right now because while my family understands my suffering they haven’t experienced it. I want to live but I’m struggling to be patient and get through each day when I can’t sleep, can’t tolerate light well, and don’t know when this will get better. There’s not much you can do concussed.

Anyone else get this where you are drifting off to sleep and get jolted awake by adrenaline? At my worst, I lost out on 40 consecutive days of sleep bc I couldn’t override this. Just recently I got a concussion that is developing into PCS and I am getting the adrenaline surges and not able to sleep again. How do you guys cope? I’m thinking I get a bunch of anxiety meds and try to kill the bacteria and detox as best I can, but damn is it hard to deal with. Especially trying to heal a concussion

ALSO: edit, it can fight through almost any drowsy medication, including Benadryl. It truly astounds me

I got two copies of Lauma’s signature. I know it’s really good on Lauma and Nefer, and I thought I could put one copy on each of them. But the passive won’t stack, so I was wondering if that would cause damage loss. Is it better to use it in another team/on another EM support character? Ideally I’d like to put one on Nefer, but would it benefit her overall damage more to keep it on Lauma? I have two Nightweaver’s Looking Glass and one R1 Dawning Frost.

I have had two echoes of my heart, and had a positive bubble study both times. I had a transesophigeal echo and they didn’t find anything, not even a small hole in the heart. Is it possible for hEDS to cause a positive bubble study? The ultrasound techs both times commented that I had “flappy valves.” None of my other comorbid diseases explain this.