Every so often, in spite doing as little as possible cognitively, I experience a crushing fatigue where I feel so weak all I can do is rest in bed with my eyes closed, as even the light disturbs me.
I have to be honest and admit that this frightens me. I have been very aware of my mortality since my brain injury and sometimes when I have this extreme fatigue I think that this is it, game over.
Does anyone else have this or see it in those they are caring for?
I can see from reading on here that I’m fortunate I can do even the things I am able to do....get dressed, make a simple meal, write, chat with friends, have a bath, go out occasionally.....but sometimes I wonder if because of what I can do I’m living in denial regarding how much my brain has been damaged.
Thanks for reading,
Ian
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IanAG
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Hi Ian, my son suffers from fatigue too. It’s just a case of knowing the signs an knowing when to stop and rest. My son was told by a headway worker that the ‘healthy brain’ can take up to 2 years to recover from injury never mind the damage part. It’s just a case as taking each day as it comes. Did you go back to see your doctor?
Hi there, yes I did. I’ve been referred to a neurologist at last.....a year after my injury.....so hopefully I’ll start to get some support. My only concern is that because I experience mental health issues too they’ll put my symptoms down to that. CO poisoning seems to be so rare that I’m not confident about getting good support.....although you seem to have got that. By the way, sorry for taking so long to reply...been without broadband for a week or so.
Oh Ian I’m so glad to hear from you. I thought I may have offended you in some or or something had happened. So glad to hear you have got a neuro appointment and it may take a while to come through but I think you may be surprised by the support you will get. You are wanting answers for your symptoms not your mental health. Your symptoms will be having an impact on your mental health but they are two different things. And if you don’t like the answers you do get you ask for a second opinion.
The NHS has been great with my son.
Thursday my son went to see Professor Gus Baker to be reassessed. He did say he has seen people with CMP far far worse than him but it doesn’t make you feel any better hearing that because you want help with your own symptoms. He said he’s going to send his report back in 6 weeks.
You may feel like your having to battle at first but once you get that ball rolling it all falls in place. Remember you can always get advice from your local Headway too.
Switched to my I pad as the reply I wrote on my phone I managed to clear off before I could send it!
Ye, as others find it difficult to see our BIs we all tend to be hard on ourselves because we don’t see the injury, we have to live with the changes it brings to us.
In my case, visually my smile is no longer symmetrical so I don’t look in mirrors unless I have to. I’ve been out with some very interesting hair before now😀.
The crushing fatigue does get more manageable, but I must say that I still need a period of rest daily with my eyes closed. You can’t shut out audio input unless you wear ear defenders, and I’ve even tried that!, in the house of course, but at least closing your eyes removes the visual.
I’m 6 years post BI and can function so much better now I’ve been prescribed a medication that removes my pressure headaches, no longer the 2-3 days totally wiped out every month, I can plan and know when I wake up I’ll be able to fulfill those plans.
So, I’m sure you’ve been told that 10 months is early days, and it is, but you are thinking no I should be back to the old me now, I’ve relearnt all the basics, why can’t I just get on with my life?
And you will, but differently, now is a new way of life to be learned.
Think how long it took you to learn the old one, baby to child to adult. This new one won’t take that long because a lot of the basics are there, cut yourself some slack, go with the flow, you’ll get there quicker that way.
Listen to your body along the way and it won’t let you down.
I can relate. I couldn't lift my arms to wash my hair. For months. Difficult to understand until you've been there. When I found some energy, I found a osteopath practice that offered The Perrin technique. Not only did the practitioner explain that it was something physical that I was experiencing (blocked lymphatics near key areas where energy is generated in the body) he barely touched me and let me talk about the emotional frustration of my situation. No-one had allowed me to talk. He shared stories of other patients he had helped in worse situations than me, chronic fatigue for years etc.
I lay on my back, he placed his hands under my skull at back of neck. I relaxed, he moved his fingers very slowly and gently. After first treatment, I thought he was ripping me off because it felt like he hardly did anything. He said I didn't want to overdo it so we will release it gently. I went for three treatments. Oh my goodness. He released it. Be ready for the body to be flooded with toxins, emotional roller coasters followed, but with energy to wash my hair again.
Best wishes.
What is the Perrin technique?
Dr Raymond Perrin, a registered osteopath, devised his therapy in 1989. In his book The Perrin technique (Hammersmith Press), he explains his theory that “CFS/M.E. is very much a structural disorder with clear and diagnosable physical signs, including disturbed spinal posture, swollen lymph vessels and specific tender points related to sympathetic nerve disturbance and backflow of lymphatic fluid.
“The fluid drainage from the brain to the lymphatic channels moves in a rhythm that can be palpated during cranial osteopathic techniques. A trained practitioner can feel a disturbance of the cranial rhythm in CFS/M.E. sufferers.
“The Perrin technique helps drain the toxins away from the central nervous system and incorporates manual techniques that stimulate the healthy flow of lymphatic and cerebrospinal fluid and improve spinal mechanisms. This in turn reduces the strain on the sympathetic nervous system.”
Have found a youtube short documentary on the Perrin technique. Why have I never known about this before?!! It's totally believable the theory behind CFS/ME. I have always suspected an influence by the lymphatic/csf in my case. I suffered a SAH somewhere in the region of occipital/parietal with pooling of blood around the ventricles (circle of willis), mid brain, and hydrocephalus.
I know as a natural consequence of having had a sah, I would suffer neuro-fatigue, but in the last few years, physical and mental fatigue has completely become unmanageable. I am going to look in to this.
Thank you RecoveringH for recommending this fantastic treatment!!
I will do. This morning I spoke to a cranial osteopath specialising in the Perrin technique. We spent half an hour discussing the issue and other conditions related to brain injury, mainly cfs. I am going ahead with an appointment to see him soon, perhaps next week.
RecoveringH, do you still keep to the exercise regime they gave you?
It was 5 years ago. I no longer have fatigue. I can sprint, walk long distances and feel great afterwards instead of feeling hammered, bruised and aching.
I did try manual lymphatic drainage but did not like feeling awful after. I used to do little short walks once, twice, sometimes three times per day.
In 2015 the NHS was trialling the Perrin technique for chronic fatigue syndrome. Under treatments for ME on the main NHS website, they still recommend CBT based on incorrect finding that its all in the mind, made up! Oh dear!
Did you feel when you spoke with him like he understood your symptoms and did he offer examples of how Perrin technique has helped others?
Thanks for the ME exercise link which I will find v useful. Short walks certainly do help and I usually practise these on and off all day. CBT 'IS' a total waste of time!!
So you have a brain injury with no symptoms of cfs. Is this correct?
The cranial osteopath spoke a great deal on the subject, pointing out added effects of CFS/ME on the heart. Lactic acid is produced by the heart so the more extreme the fatigue creates problems for the heart, e.g., palpitations and rapid pulse. He sees around 10 ME patients a week. I asked if they were benefiting from his treatments and they most certainly are. He describes treatment as team work, setting exercises (pacing and lympthatic drainage and others) to practise every day outside of appointments. He can tell if someone hasn't followed them at the next appointment by the cranial energies. I asked him if he had specific experience treating a SAH patient and he said not, but has treated other brain injuries. My mobile connection wasn't great during our conversation, (he also had a Swiss/french accent), and spoke rather rapidly. I tightened my eyes and strained my hearing to capture every word. I trusted him by the end of our discussion, enough to book an appointment to see him. In the meantime, I will read up as much as I can.
Thank you for your help and If you think of anymore ideas or advice, I'm all ears!
He sounds great. I hope the first appointment goes well and he is able to help you achieve the energy levels you are seeking.
My injury to the brain occurred over a number of years due to a systemic virus which started to block off parts of my brain and resulted in severe difficulty reading, speaking, walking, coordinating, planning, standing, seeing. For a while I lost access to my memories which was most disturbing for my family. I had a stutter for a few years. The chronic fatigue occurred for roughly 3 years. I do not consider myself to have a brain injury now as I have all my abilities and can process at fast speed with both short and long term memory working fine. A number of factors came together to facilitate my brain injury including injury at work which was slow healing, mercury poisoning, vitamin deficiency, anaemia, spinal misalignment, high stress, working through the night and virus.
CBT has its place as does meditation and deep breathing to induce calm, understanding and deeper relaxation. Chronic Fatigue / ME is a physical functional error which needs physical intervention to fix it. When I read about Perrin and the blocked lymph I had white striations of blocked lymph on my breast tissue so I knew I had a lymph problem and I knew Perrin technique would address it. The white striations have gone now.
Best herbs for a healthy lymphatic system:
Red Root powder, Astralagus powder - I put in breakfast smoothies with hemp protein and fruit.
Cleavers herb capsules - In the early days, I took a course of 3 times per day for 3 weeks, then rest for a few months, then repeat, now and then I have the odd one.
Fresh Turmeric root and Fresh Ginger root - I have these in a breakfast juice of pineapple, apple, mint, lemon, ginger, turmeric, cucumber and celery.
You just learn to manage the lymph with food. Cut out dairy, gluten, yeast, sugar, and eat a lot of raw salad foods, quinoa, beans, mostly vegan really, sometimes have 30g of turkey and avoid anything that slows digestion down which contributes to congestion.
Re: cranial energies, they palpate the lymph manually at the back of the neck. It really is amazing and gentle. Had a huge impact on me. I'm sure my lymph was going backwards, backing up into the brain, interfering with my hormonal and sleep cycle.
Good luck and look forward to hearing how it went. Fingers crossed for you.
Thank you so much for your post which I relished reading. I am so grateful!! My daughter is vegan and advocates I join her, may be I will. Dr Sarah Myhill recommends a Paleo-Ketogenic diet which is similar to what you suggest to manage lymph congestion. There is so information to absorb. You mentioned you were self-taught on the nutritional sciences. You have such a gift. Ever considered writing a book to help on brain recovery?
I too have a real awareness of my mortality and significant people in my life. For me the fatigue presents itself as a pressure in my head and sometimes like wearing an iron mask. It makes me feel extremely tired and I can't concentrate at times even to put a coherent sentence together. As daft as it might sound even with this going on I sometimes find I can't sleep and have to do something relaxing until the pressure/iron mask feeling wears off.
Most of the time now I can manage without getting bad fatigue by having lots of routine but if I'm doing something out of the ordinary it can affect me for a few days until I get back into my established routines again.
A site run by Feri Kovács, a clinical Neuropsychologist in Holland, was brought to my attention, it includes sections on fatigue and a whole range of associated issues. I don't know anymore than that, as I know my ongoing fatigue is caused by my symptoms, so I've not bothered to explore the site myself.
hi ian, there is a characteristic of carbon monoxide poisoning that i want to share with you. damage can continue for a period after exposure has stopped and symptoms can get a lot worse. this does seem to reach a 'peak' of feeling significantly more unwell, it then seems to plateau at a stage where it is more about management than recovery. you are early days and all i can say is that care of yourself is the way foreward. it is very hard to believe that these symptoms are not life-threatening as they are often severe, i have had many conversations with long time survivor of poisoning who reached level of stability and has a quality of life. i absolutely get what you are saying, it is difficult to believe that such severe symptoms are not an accurate picture of overall health. this will take quite a while, 10 months is so recent. please keep in touch.
Hello Ian, I can understand the fear you have. The absolute tiredness you get is not unusual. You brain needs stop at times, so maybe this something to expect from time to time and go with it. They sound like they resolve. Best wishes and I hope you have good support around you
Hi everyone, just wanted to say thanks for all your replies and support and apologies for not getting back sooner.....we have been without broadband for a week now and just got back on line this morning.
I spent a few days in bed and severe fatigue seems to have passed now.
At last got an appointment with a neurologist on 14 April so hoping I can get some help managing my condition. Just feel so unwell still.
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