Hi all. Does anyone have any idea how to tackle this please?
Just over four months into PCS. At first I had to build exercise back up but managed to get to walking about five miles a few months ago. Not without symptoms and obviously pretty shattered the next day, but I could do it.
Over the last month, however, I can barely walk or exercise at all. I'll be out breath after five minutes, feel dizzy, chest pains sometimes (they come and go - chest x-ray and ECG both clear), headaches sometimes. To the point where I've almost had to give up going on my little walks, one of the few things that was keeping me sane. Similar issues with other things (eg I've just started very simple indoor bouldering again, on the very beginner problems to try to get a bit of my coordination back).
Physio diagnosed BPPV but the vertigo has got worse rather than better recently (it had previously massively improved since the early days). I'm wondering if this might be down to the fact my GP had me trying sertraline and Montelukast and then more lately two rounds of antibiotics, most recently for an ear infection. So what will be will be on that front.
The exercise though... I'm stumped. I'm told to pace myself and only ever build up 10% more than my baseline, but these days my baseline is lying in bed (and sometimes getting vertigo there).
I've also found I can no longer tolerate the cold, so wondering if there's something nervy going on.
No rehab yet.
Any ideas welcome... No idea whether to try to press through and build it up, or give up.
Ta!
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Ideogram
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Hi Ideogram, it may be time to settle down a bit rather than trying to force a recovery. You are still in the early days after your injury, that may be hard to contemplate but many will recognize the phase you are going through.
We think that if we push to recover we will recover but for me and many others it did not work that way. Your brain and by the sounds of it your cervical/vestibular/ocular reflex (that's what causes vertigo) has not had time to recover from the initial injury. Think of your injury like a broken leg, you've got it in a cast, the recovery process means rest and non use, but if you try running on it to recover the function, it just gets worse and the initial mending does not happen.
You may want to let it all rest and heal before trying to remold the brain and before you attempt vigorous exercise, like 5 mile walks and bouldering.
We've all tried it, it's a societal norm to push and fight to recover, but in the end we realize we have to rest, accept the early limitations and when you are ready to start the recovery process your brain and body will let you know.
Try not to get stressed about it, it will come and you will recover, it just takes a little time. Try to be patient, maybe try some mindfulness and relaxation and don't worry about anything. The world will still be there for you on the other side and you will have a new life and a new you at the end of it.
Thanks. The thing is it did improve a lot though. I had this vertigo badly in the early days, and then over weeks and months it massively improved to the point where I could countenance gentle bouldering. The vertigo is presumably (hopefully...? Who knows) massively influenced by ear infection, but the exercise intolerance was never as bad as this. That's why I'm trying to understand what's the behind it - it would make more sense if it were a symptom from the beginning.
I get the general thrust of not trying to overdo things (I have definitely had to drastically reduce what I try to do even from the first few months, out of necessity), but I refuse to accept yet that the only outcome is that this will have to be long haul. I definitely doesn't feel like I'm going to get anywhere by just lying on the sofa and waiting for divine intervention.
There are activities that sit between pushing too hard and slobbing out on the sofa..
Chi Gong, Tai Chi or gentle yoga are good to keep the body active and will also help to restore vestibular function in good time but without pushing you into post exertional malaise.
Been here - sometimes you improve only to go back a few steps. In my experience when that happened I needed complete rests - brain breaks through out day (10 -20 mins eye mask on ear plugs in lying on back) after a few days I generally improved and then slowly started exercising again. I found keeping a diary really beneficial in the early days as if I did a bust i could go back over what I’d been doing and see if anything triggered it etc. it really is early days for you and the cycle of boom things going great so you try a little extra to bust opps too much and need total rest again are real 😬 acceptance that this is the new you for a bit is key to moving in any direction - it can take time and even some grieving for the old you but helps in the long run if you can try accept the different and new you. Hope this helps a little - you are not alone and it WILL get better 😀😀
Reading your symptoms, I think you may have a pituitary/endocrine problem. Cold intolerance is a symptom, as is headache.
Look up pituitary/endocrine dysfunction after brain injury and see if anything resonates with how your feeling.
I think you should ask to be referred to an endocrinologist for specialist bloods tests to see if they can identify what's going on. Be aware, however nothing may show up in the first tests, nothing did with mine but I know my endocrine system hasn't been right since my injury I 2018. My ability to feel like a human being was getting worse year on year and it's only been recently when my periods started to change I started researching perimenopause and TBI, which then took me down the pituitary/endocrine thyroid route.
The endocrine system is super important and complex, so if it's out of whack you wont feel well at all.
I hope you find some answers because it's horrible not understanding what's wrong. Half the battle, for me, anyway is actually understanding why I feel the way I do.
Thanks Tinks. I actually asked my GP about whether I could be perimenopause and she sent me for a blood test that's listed as 'endocrine studies' and that came up as normal. Not sure if that covers all the same stuff but I'll pick it up with her. I think it must be something like that though as it's more than just the normal 'done too much' fatigue and a different nature; it feels more like something secondary like my heart or chest not working properly. Cheers for your help.
Ideally you really need to see an endocrinologist, they can do specific/specialist tests that your GP can't. They are experts on the endocrine system so you'd be in better hands (well you'd think so 😉)
I was fobbed off for years, even by Dr's who specialise in brain injury, that I was depressed. I knew I wasn't because I've been depressed before, and what I'm experiencing wasn't it. It was maddening, I felt so misunderstood and ignored.
I still don't have a specific diagnosis but I'm on the right path to gaining my quality of life back. I'm currently taking progesterone which has helped ease my period symptoms and lifted me in general a little, but there's 'something missing ' , my thoughts are still slow and clunky and my motivation is still quite flat, so when I go back in June to see the endocrinologist I'll discuss it with them.
Hi Tinks, just a question out of interest, progesterone is produced and regulated by the ovaries and ovary cycle. How does this relate to the brain/ neuroendocrine system?
I'm learnin myself, but progesterone can also help with calming anxiety. Its what's produced on mass while pregnant. Healing hormone maybe?
I am concerned that I've not been given estrogen to take along with it, and I've queried that, waiting on a reply from my endocrinologist.
I've not yet had more investigative tests done, to see how my body is functioning but I'm going to ask at my next appointment. I hear getting them is resisted because, well, its the underfunded NHS.
Taking progesterone has definitely helped with the worst symptoms I've been getting around my cycle but I'm definitely still not 'me' or functioning like I know I can, even after my injury.
At times, early on after my injury I felt fine, I was pre injury but I couldn't sustain it and each time I dipped I spent longer and longer in 'it' till last year I barely came out of 'it' at all. It's really difficult to articulate to others too.
It's such a complicated problem and it seems its not picked up nearly enough by the medical profession.
I've spent 5yrs searching for answers from professionals and felt totally misunderstood or dismissed. Its a hard journey.
I fear for our NHS, they are determined to sell it off and as bad as care is atm, it will be awful under the worst American model.
Hi Tinks. If you get no estrogen joy from the endrochronlogist you might from a gynecologist. If you are of a certain age going to a pharmacist who specializes in menopause can also help - docs will take recommendations from them more easily. (They go by symptoms so you can tell them what's going on, maybe check on Google to make sure you don't ovetlook anything.)
If you are being given progesterone it is unrelated to brain injury because you would have been given FSH as a replacement instead. May be there are two things going on, one is that you are having menopausal issues and the other is that your brain injury is causing your cognitive effects.
Putting all your eggs in one basket, ie thinking that endocrinology will 'cure' everything may not be a good idea. It has obviously helped you for certain things but it seems there are multiple other things that can help also which have been described by people, physio, optometry, mind/body exercises, memory training etc.
Hi Ideogram,You say you were doing well and then back slid.
You are only something like 4 months post injury.
This is significant.
I went through feeling I would recover and then had terrible vertigo, I couldn't even lean over slightly without feeling I was going to lose my lunch, and sometimes I would. I also developed tremors in certain situations.
If you have BPPV it can, from what I understand, be easily tested. What you do is lay down flat, arms by your sides and legs not crossed. Look straight ahead for 5 minutes. Look as far right as tou can for 5 minutes, then as far to your left as you can for 5 minutes. This should be enough to correct the crystals in your ears. (There is a faster move a neurologist does while you are in the process of laying down but you can't do that to yourself.)
If it's that, count yourself lucky.
The other thing you can try is seeing a neuro optometrist. The eye / neurological system can become damaged. Sometimes wearing glasses with prisms in them can help. In some cases the issue is the speed of the vision gets the wrong speed for the brain and it can cause issues.
There are also exercises that be done. This bit tends yo be expensive, you will feel terrible, there are currently no standards of practice and it works wonders for some and is merely a misery for others. The glasses bit is definitely worth checking. (This is advice I got from a very experienced neuropsychiayrist - someone who is an MD, a psychiatrist, and someone who has studied the brain - who knows what comes from what - they can be very helpful if you can get in to see one - this depends very much where you live.)
The next possibility I know of is harder to take, though healing does still happen over time. In this case. The injury happens, you improve, and then 3,4,5 months out sort of thing you get worse. What happened? Inflammation. There are nuerons in the brain where the bulb is one one side and the tail in the other, crossing between the white and grey matter. Inflammation destroys the tail over time. Look up axonal shearing. If it is this you will still heal (to a place way bettwr tan you are now) it will just take time- measured in years, not months. Fastest healing happens in the first 3 or 4 years.
There may be other reasons.
OK, so what do you do now?
In my case I found using a walker outside the home really helpful. It gave me information about where I was in space and gave my brain a little more time to process changes in terrain because I got a bit of forwarning. (Yes, I know... and really it can be your best buddy.)
I also found sound, light, and certain visual stimulation made it worse, so I got some grey sunglasses with a wrap around side and wore a hat. I also got some of those ear plugs people wear in planes to cut the engine sound down - you can still hear . The sort musicians wear in concerts also are good - they are a bit more expensive so you can try the airplane ones first to see if it helps. Or, some of those ear protectors construction people wear, if you happen to have some around.
The endrochronology thing is definitely something to check. I am just recently aware of it and will go to a naturopath. (Where I live in Canada a specialist is a 2 or 3 year wait , if you can get in, and there happens to be an ND who is interested in this aspect of bi.)
The other thing no one told me I wish they had is to watch out for medications. Some of them ruin your liver or kidneys over time. Ones that cause dry mouth cause massive cavities. Dry eye is also an issue as it can cause scarring.
People with brain injuries are also typically sensitive to medications - meaning a small dose will do it and you may not react in the typical way. (Your brain/body injury may literally not be wired the same anymore.) For example I can't take anti inflammatory medications because they cause inflammation. Paracetamol I can get away with but none of the heavier NSAIDs.
Generally you end up being your own science experiment so keep a log of what you try and what happened and how you feel.
You may find, for example, you are worse during storms or any change of weather when the barometric pressure changes. Anything that used to happen automatically may not quite be so automatic any more.
I will also pass on that alcohol and caffeine are not your friends right now, they are hard on the brain. And, the thing you do need is good fats - your brain is mostly made of fat. So it isn't the time for a low fat diet. You need some good omega 3 and yes, some of that butter.
People do heal at different rates so at this point you don't know how it will go. A few months is still considered a fresh injury in terms of bi, so don't panic. Yes, it would be nice if it were like a broken leg, with a clear healing and treatment path. It is not. Though Pink Vision has made some inroads there.
I hope it goes well for you and you get some relief soon.
like many have said before you are at very early stages .. and yes it is very much two steps forward and theee back at times .. but slowly you will improve … I was I do everything till I crashed , then recovered over a few days or weeks and back at it . I’ve only recently realised that most of this was for physical injuries and know I’m starting to deal with the impact of my new brain vers my old brain .. as I’m physically a lot better from my accident except hip issues due to weakness in legs and the old me wants to do things that the new me just can’t do or mess it up 🥴.. so I’m 3 year + post tbi and am still attempting to except what or who I actually am .. keep writing on here as this is the place to know your not along, we do understand and will share everything we have tried to help others .. keep driving yourself but please don’t over do it as I think I have regarding hip pain .. such a shame we do have to self diagnosis and self care as I’m sure with some rehab life would be a lot easier … Sue x
Hi Ideogram, just having a virus or an infection can knock me sideways, even now. Infections rather than viruses need you to rest up to get rid of them. So I'm just wondering if what might have been previously gentle exercise for you, might just be pushing things a bit far for you post TBI? Perhaps rest up and get rid of the infection, and start again gently?Incidentally, keep an eye on your pulse rate during exercise - don't let it get high enough to trigger any symptoms like nausea or a tight band round your head. It may all seem like incredibly slow progress, but you will get there.
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I actually asked my GP about whether I could be perimenopause and she sent me for a blood test that's listed as 'endocrine studies' and that came up as normal. Not sure if that covers all the same stuff but I'll pick it up with her. I think it must be something like that though as it's more than just the normal 'done too much' fatigue and a different nature; it feels more like something secondary like my heart or chest not working properly. Cheers for your help. 
I still get moments of frustration with my friends TBI after 2yrs 8 months.
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