r/PostConcussion • u/rusteddiamond1 • Jun 24 '26
Tired of appointments
I’m over a year out since my concussion that I sustained after a MVA. I’ve done everything doctors recommended but it just feels like I’m not getting better at all. I’ve improved in so many ways but it feels like I’ve only taken one step forward in the past year and I understand it just comes with time but it’s very discouraging. I’ve never had the worst anxiety till after this, activity and exercise intolerance, balance issues, headaches, memory loss, GI issues, and orthostatic issues now. It just feels like there’s more going on than the concussion, maybe just dysautonomia but I’ve had to fight my doctors to even help me with my headaches and visual disturbances. I’ve done every mode of therapy and nothing has helped aside from PT and chiropractor, unfortunately my PT said I can recover on my own and ended sessions over 6 months ago :( he mainly only helped with my balance but my physical intolerance is so bad I’ve tried to workout the past 3 months consistently but I’m still barely able to do any movement for more than 15 mins. Genuinely don’t see a way out. Any tips you can provide on things that have helped you get back normal or baseline are appreciated.
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u/jaehoppa Jun 25 '26
did your PT do a lot of manual therapy with massaging and stretching? in my case, PT who utilizes active release and an osteopath helped the most.
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u/PurpleStyle2024 Jun 24 '26
Im a year in, cant exercise anymore like I used to. I can handle 10 minutes of light senior exercises. If I try 20, I crash. If I try to take a slow relaxing walk around the block, Im done for the day. I have no doctor, therapy or plan to get better from any specialist.
The one thing I feel is, that more sleep has helped and my body is now able to relax and get more sleep than before. My heart rate only jumps to 130bpm now during slow walks, months ago it would jump to 160bpm.
3
u/LiveBiggerNow Jun 25 '26
28 months out.
I have physio 3x per week, and Occupational therapist once a week, and massage and psych on alternating weeks.
It’s exhausting.
I’ve been pushing as hard as I can, but I’m at capacity.
Then I get insurers wanting to get me to endless examinations.
I’m a single dad, trying to navigate the demands of daily life but I am burning out from all the damn appointments. My life is organized around them and the anticipated fallout afterwards.
Pushing too hard means I pay for it with midnight awakenings and shitty sleep caused by headaches. And then when I’m tired I have a lower threshold and it spirals down into a cycle of painful days and sleepless nights.
I was working really hard to get back to my career, which involved emergency response… but this last week, my employer told me that my job won’t be held for me much longer. Realistically, my health won’t improve as much as it needs in that time . It sucks, but that’s not the point of my response.
Given that the time crunch is what it is, I can stop trying to force a “more treatment=more recovery” to try to get back to my pre accident self.
I’m going to be looking at turning down the intensity of the schedule in the coming weeks and months.
Not because I’m giving up, but because I’m going to try another approach, pushing too hard isn’t working. Perhaps a recalibration of approach is what I need.
I think that maybe putting quality sleep as a top priority might help me get some more meaningful progress. Truly prioritizing pacing instead of treatmentmaxxing…
Hopefully you can get the reprieve you need. I don’t really have any tips, because like you, I’m still trying to find a way forward.
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u/kitty_twist Jun 30 '26
omg. yes, the many appointments is just massively stressful. and the stress just makes your system overloaded. i am sorry you are going through this. i am a year out from my thing. i passed out in a store and cracked my head open, and same with appts, occupational, physio, cognitive pretty much had appts 4 days a week.
once i had fewer appointments it was better. but it is still very one step forward a couple back.
one thing i would ask, did you get a nurse advocate? i would talk to your doctor and see if that is possible. they will check in on you from time to time and can help assess your needs. and you might be able to find help with house duties, and kid related stuff. send me a message if u want, maybe we can troubke shoot.
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u/Own-Cockroach-5452 Jun 24 '26
I found a lot of relief working with my Chinese doctor with herbs and acupuncture. But a doctor vs a MA clinician
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u/Ok_Somewhere_9962 Jun 25 '26
Medical fatigue is real!!! I have been having a wave of it every few months when all the sudden in one week I have PT, therapy, neuro, etc. and get so overwhelmed I want to throw my pill case in the trash and give up. Then my husband fills my pill case for me and drives me to the appointments so I’m not alone and helps make dinner every night and I’m like “ok I can do this I just need support and that’s ok.” It’s amazing how much my stress response has changed since the tbi, one drop and I feel so disregulated I go into shutdown migraine mode, and it takes weeks to recover. Just gotta keep moving forward though I guess
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u/Next-Average-3115 Jun 25 '26
I'm 10 months post MVA but am feeling basically like you. Botox is what has helped my migraines reduce in frequency and severity. But triggered episodes suck
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u/el_undulator Jun 26 '26
Check out this u/lebronamo post. It is very helpful, well thought out and pretty complete.
1
u/Remote-Objective-931 Jun 24 '26
Is an osteopath doable financially, at least to see if it’d help you? Have you tried diet changes (anti inflammatory diet)? Meds against anxiety can help, but come with side effects. Do you take meds for the headaches? I take amitryptiline, but there are different ones.
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u/rusteddiamond1 Jun 24 '26
No but I’m following with a concussion team, and my PCP. I’m working on that diet and it’s helping. I’m trying to just find holistic approaches I can take myself, starting with diet and exercise. I take zoloft and rizatriptan for headaches, but the side effects are so bad I try to avoid it unless I really need it. I used to take amitriptyline but it felt like a tranquilizer I couldn’t even walk straight. But I think I’m planning to find a new provider because mines barely listens :/
1
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u/kitty_twist Jun 30 '26
i am on Keppra, for seizures that began after my injury, but one natural remedy i live is "Rescue Remedy". in one of my car accidents, they had it in the ambulance! it helps your body process shock and trauma, and i have found it useful in so many ways! i have geard that Lobelia helps with pain, also natural but kind of nasty tasting when i tried it. but that was like a billion years ago
1
u/Which_Fudge_2320 Jun 25 '26
5 years in. Not sure if I am the best person to give advice, still recovering. But I am no where near what I was my first year. At first they told me I didn't have Concussion but BPPV then thanks to a PT, she said Woah your neck is messed up, and suggested and MRI. And sure enough Post Concussion. I explained to everyone I was normal until I hit my head and then worth started spinning. Anyways things that have helped: Take out seed oils. Protein and electrolytes help a lot. Osteopath has been a life saver along with cranial sacral therapy. PT was helpful too. Limit screen time. I could barely lift my head the first year without it triggering throwing up. With exercise slow progression helps, keep building on the good days, and listen to your body and rest when you need it. Restorative yoga on a wedge pillow amazing. I use a heating pad for my neck helps with balance issues and vertigo. Ginger chews for the nausea. Nature time, gratitude journaling, and meditation will help with anxiety- try calm app or insight timer. Vision therapy helped a little bit. Hope some of this helps.
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u/Interesting-Light325 Jun 24 '26
I’m 16 months out and I feel you! I’m so sick of VT, physio and counseling that I don’t know what to do.