Comments on: Surprising physical symptoms of my brain injury

By: Michelle #jumbledbrain

Michelle #jumbledbrain — Fri, 27 Nov 2020 02:24:51 +0000

In reply to crystal vandermeulen. It imagine that your nervous system needs to relearn what it needs to do. Perhaps an appointment with a gynecologist would help you and they could advise you on what to do. I had to do pelvic floor exercises after my injury and with time things got better.

By: crystal vandermeulen

crystal vandermeulen — Fri, 27 Nov 2020 01:36:06 +0000

In reply to Jo Wood. Im embarrassed major . but I have an unusual symptom of my severe tbi. Im having vaginal issues. I want to know why and howto fix

By: Michelle #jumbledbrain

Michelle #jumbledbrain — Tue, 25 Feb 2020 14:42:26 +0000

In reply to Lizbeth. Think it’s time doctors stop using the text book when diagnosing which symptoms are and aren’t because of our brain injury- the brain is so complex that they need to accept that they’re not always going to be able to predict what symptoms a particular injured region will produce.

By: Lizbeth

Lizbeth — Tue, 25 Feb 2020 14:32:07 +0000

Thanks for sharing your story. I had a stroke just over 4 years ago, and yet I am still discovering things I’ve taken for granted are actually aftereffects of the stroke. I didn’t know enough to describe the symptoms in a way that the doctors connected them with the stroke, so nothing was explained to me. For example, I recently learned that the reason I felt like my tongue was swollen and didn’t fit inside my mouth (looked normal) was because of the swallowing problems experienced by many with the same type stroke I had (brain stem). I could swallow just fine, and that’s all they kept asking me, but the fake swelling is part of that condition. I can’t blame them, they asked the question, I just didn’t know the right answers. (Fortunately, that cleared up on its own after a few months.) It’s frustrating to struggle along, thinking there’s something wrong with my attitude, only to discover that it’s actually a physical disability and no one told me, but I imagine that if they had listed everything that could possibly happen after a stroke, it would take hours, and then I wouldn’t remember most of it anyway! 🙂 I can especially relate to your left-side sensation (cold water like a million little razor blades slicing into my arm!), and that’s one of the things I had to self-diagnose. My hospital doctor shrugged it off as “some kind of neuropathy” that had nothing to do with the stroke; my neurologist agreed with my assessment. Apparently, it’s extremely rare with brain stem strokes, so I’m glad I’ve been “allowed” to have the condition so we can work on minimizing it!

By: michelle.munt@yahoo.co.uk

michelle.munt@yahoo.co.uk — Fri, 04 Jan 2019 09:39:38 +0000

In reply to Darlene. It’s the hidden symptoms that people don’t see that are the most frustrating. Yes people might think we look fine, but they can’t feel what it’s really like for us.

By: Darlene

Darlene — Fri, 04 Jan 2019 00:49:17 +0000

In reply to Holly Anderson.

FINALLY acknowledgement of tactile issues. I cannot stand to be touched, hold hands, have my boyfriend rub my back or anything like that.. I too now suffer anxiety, have headaches every day,and i never had headaches before, i cant drive more than 20 miles, i have difficulty with finding words, i am just not MYSELF and it has been 3 years. I had to retire early . I hide it pretty well and hear “you look great” if i see a former co worker , they have no idea it takes 2 hours to take shower and get ready because of the FATIGUE and dizziness nausea
Most days i think this cannot be my life….
Anyway thank you to the person brave enough to talk about sexual problems,most research on men, and to talk about the skin issues. I was beginning to think i was crazy. So glad i found this board.
Grateful,
Darlene

By: michelle.munt@yahoo.co.uk

michelle.munt@yahoo.co.uk — Thu, 14 Sep 2017 21:55:35 +0000

In reply to Maxine. Unfortunately it seems many survivors feel let down by the lack of information given to them. Perhaps doctors don't want to confuse or panic us. But whilst that is a good intention, it leaves us bewildered and confused. I'm glad my story is proving to be useful for you. Together we are all helping one another.

By: Maxine

Maxine — Thu, 14 Sep 2017 21:17:46 +0000

Thank you for sharing. I have found information from the medical establishment to be lacking in all areas of brain injury. I struggle with temperature control as well as altered sensation especially numbness and tingling of my legs and hands. I am really grateful for your posts. I am completely lost at sea with this injury and lack of local resources.

By: michelle.munt@yahoo.co.uk

michelle.munt@yahoo.co.uk — Thu, 22 Dec 2016 17:55:38 +0000

In reply to Jo Wood. Thanks Jo, I like to think it helps people. ?

By: Jo Wood

Jo Wood — Thu, 22 Dec 2016 13:52:35 +0000

Hello, I love your honesty, it frees others to speak more openly. You’re so right about the information given, or lack of it when you are discharged from hospital. The NHS has been amazing, I can’t fault the care I have had, but have found communication and information lacking, especially when a poorly brain tends to overthink everything. But then again, if I was given a long list of possible outcomes and recovery problems I think, I would have been totally overwhelmed and been very depressed, focusing on the negatives that I could be suffering from and not the positives that I can do, or relearn to do.
I find everyone person who has a brain injury has a unique story and their difficulties, that are different from everyone else.
I can relate to the bladder being full very quickly and I can’t wait, so I have become a ‘toilet spotter’ wherever I go, because I will need it. Constipation, ohhh awlful, I read somewhere that if you have a head injury, you need to hold your head while your in ‘action’ on the loo, why I’m not sure, but it doesn’t make you go more or easier and knocks your balance off, ha ha, sometimes there’s information overload, that’s not useful.
Best thing I have found in my recovery is reading blogs like this, after all you are living it, so bring on the contributions! It helps, gives hope, it’s not as lonely and makes you smile! ?