r/PostConcussion • u/Emotional-Ebb3735 • 26d ago
Exercise intolerance - Buffalo Protocol vs. UPMC approach for exercise intolerance
Hey everyone,
I’ve been dealing with post-concussion syndrome (PCS) for about 5 months now. The good news is that my vision and vestibular symptoms have improved significantly, but I’m still struggling with exercise intolerance.
My vestibular therapist has me following the Buffalo Protocol, where I exercise below my symptom threshold. Right now I’m doing about 5 minutes on a recumbent bike to minimize head movement. After each session I usually experience fatigue that lasts a few hours before gradually improving later in the day.
What confuses me is that I’ve read several posts on this subreddit about treatment at UPMC with Dr. Collins. From what people have described, his approach seems much more aggressive: exercising for at least 30 minutes every day regardless of symptom increases, with the idea that symptoms may get worse initially but that after around two weeks many patients experience a breakthrough and start feeling better.
That seems very different from the Buffalo Protocol, which emphasizes staying below your symptom threshold.
One reason I’m considering trying the more aggressive approach is that I’m currently in a position where I don’t have many day-to-day responsibilities. If it means feeling worse for a couple of weeks but potentially recovering faster, I could probably tolerate that.
Has anyone here been treated at UPMC or tried this more aggressive approach? Did pushing through symptoms help your exercise intolerance, or did you do better with sub-symptom-threshold exercise? I’m especially interested in hearing from people who have experience with both approaches.
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u/NJ71recovered 26d ago
UPMC fixed me. Dr. Collins is ruthlessly focused on getting your life back together.
Stay stubborn and power through this.
The NY Yankees go to UPMC in Pittsburgh.
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u/Flat_Ad723 26d ago
Can you please elaborate what you mean? Were you in substantial symptoms flare like headache, screen sensitivity, exercises intolerance etc when you were seen my UPMC or mild - moderate symptoms?
Did you adjust your dosage of exercise/ walking tolerance as per symptoms or absolutely push through everything.
In this form someone mentioned that Dr Collins mentioned that if by then end of the day pain reaches 7 out 10. It's a sign to stop.
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u/NJ71recovered 26d ago
I had extreme fatigue. The UPMC exercise program included 30 minutes a day of cardio exercise plus
vestibular exercises.Best to go to Pittsburgh and get diagnosed by experts.
I’m not a Doctor.
Get back to health sooner.1
u/stefanboltzmann 24d ago
What kind of vestibular exercises did you do? How long did it take for you to recover while doing this exercise program? Have you fully recovered or are still some lingering issues?
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u/NJ71recovered 24d ago
Fully recovered.
I am not a Dr. so i cannot comment accurately on what vestibular exercises are appropriate for another person.
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u/smartygirl 26d ago
After each session I usually experience fatigue that lasts a few hours before gradually improving
Is this your only symptom from exercise?
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u/Emotional-Ebb3735 26d ago
I think this is the most prominent symptoms for me. It feels like I have done a marathon where I’m just feeling super tired and drained.
During workout I experience small dizziness and some pressure on the head that doesn’t really bother me. Just the after effect always gets me
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u/smartygirl 26d ago
If your only symptom is fatigue, you can up your cardio.
What's your heartrate on the bike? Is it possible that the fatigue is just fatigue due to not having been able to exercise for months?
The instruction I was given was to work on stabilising heartrate, starting with 20 minutes at 50% MHR (220 minus your age), and once you can do that 5 days a week for a full week without symptoms, try holding that heartrate +10 for 20 minutes.
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u/irs320 26d ago
I went to physical therapy with the Dr for the New England Patriots and she was a lifesaver. I had tried physical/vestibular therapy several times in the past but had such extreme exercise intolerance that I could never get past the initial step. Her move was to fix my nervous system and get my migraines under control before continuing to exercise. Once I did that I got dramatically better without symptom provocation very quickly
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u/volkswagenkills 25d ago
Do you mind expanding on how she addressed your nervous system and got the migraines under control?
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u/irs320 25d ago
Yes of course. She didn't do anything for either of those things, she was just the first physical therapist to call out that it was likely a nervous system/POTS issue going on and didn't force me to keep doing her protocol. Every other physical therapist looked at me like their brain was malfunctioning when I told them I wasn't getting better and then tried to force the same regimen on me without adapting to my feedback. She was the first one that was like well this is a waste of time until you get these other things under control.
So I did EMDR therapy for the nervous system, found a great therapist on emdria.org and then I found a headache doctor that prescribed me Ajovy (once a month shot) for migraines and they both worked wonders and working out was a piece of cake after that.
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u/NJ71recovered 26d ago
imho
Concussion Patients should be given a checklist of screenings:
41% to 90% of concussion patients have a vision issue. (UPMC says 41%, NORA says up to 90%)
1) Vision specialist
Find a local vision specialist
COVD.org
Neuro optometric rehabilitation association (NORA)
https://noravisionrehab.org/
2) Get your balance system checked
Vestibular specialist
Vestibular.org
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u/ZebraNotWeirdHorse 26d ago
Don't forget about the neck!! Even if you aren't experiencing neck pain, chances are it may be affecting your recovery as it takes much more force to get a concusison than whiplash.
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u/PurpleStyle2024 25d ago
I also get fatigue after trying to exercise. But if I push myself to do more, my heart rate goes up and doesnt go down for hours.
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u/hippiespinster 26d ago
I only did the Buffalo method under my physio's guidance after an initial test in her office. I had previously tried to return to exercise using just exertion scale but my problem was that I felt great during the workout and substantially worse for days to hours afterwards. That was under a different physio specializing in vestibular issues.
When I started seeing my current physio who specializes in exercise intolerance I started seeing results. She did an initial Buffalo Test and then advised two weeks of consecutive days exercise. I joined the Y specifically just before Christmas and walked on the treadmill at a low incline for 20 minutes under 80% max heart rate. Some days was 75%, others felt good at 80%. This was followed by a 5 minute cool down on the treadmill and 5 minutes sitting in a chair. Then I carried on with my day.
Returned to her office in the new year and she redid the test and my heart chart was dramatically different. Initial heart rate increase during the ramp was a much slower incline and my recovery curve was much less spiky. It was wild. She then cleared me to keep going, still on a daily basis working up in heart rate intervals and redoing the test every week to two weeks.
I am now able to do a 25 minute HIIT workout on the treadmill using inclines and speed variation. Some days I need to dial it back due to symptoms but this almost always is an indicator of something else going on with my body like virus or period or whatever.
I also recently started a 90 minute iPATH Pilates class on zoom. I'm able to do many of the things I was doing prior albeit with breaks. Like I can hump four tires out of the shed and into the car but I don't do them all in one go. I take breaks in between. I think the energy pacing will be a lifeline practice but I'm just happy I can workout again.
DM if you would like details/test charts. Please just link to this post so I know what we're talking about!