I'm not sure how this works so writing a new post to ask a specific question. As I said in my previous post I have various symptoms following a fall 6 weeks ago. One I didn't mention and which is really bothering me is that I'm getting symptoms which are like a diabetic person having a 'hypo' or low blood sugar episode - shaky, hungry, very light headed, dizzy, sweating, and sometimes if it's bad I have to concentrate hard on what I'm saying - fortunately haven't got to the slurred speech stage or actually fainted yet. And I often have a headache after. Sometimes it comes on really quickly. I've been told many times it can't be low blood sugar because I'm not diabetic, and recently had a blood test HBA1C which apparently proves definitely that I'm not. I'm trying to manage it by eating regularly, snacking on bananas, peanut butter sandwiches etc, and using jelly babies or glucose tablets for a quick fix when an episode starts, but sometimes it takes a long time to settle down even after eating a meal, leaving me feeling a bit shaky.
Has anyone else had this? Knowing my luck it'll be something unusual.
I get the shakiness at other times too, sometimes with sweating, and tingling in my arms and/or legs. I suppose this might be to do with anxiety/panic, which I had before but is much worse since the fall. I find all this very scary, feel my body is completely out of control.
PCS can give so many different symptoms which can be unpleasant at best and damn scary at worst and feel so debilitating and vary so much from person to person depending on what part of your head/brain got hit. It’s hard not to be anxious but each time something out of control happens it’s only natural to feel anxious and then things feel worse. I think you already self diagnosed that some of what you are experiencing is panic/anxiety. I completely understand how fragile and wobbly you feel, I was the same.
It’s okay not to be okay and reach out for help from friends and family if that helps. It’s a very lonely place having PCS cause no one can really understand what it feels like for you and it’s very hard to articulate to others as it’s so many different things.
I wish I could take away some of your worry but all I can say is in my experience even though things feel horrible at times, they are not threatening in any way and can do no harm.
Sending you healing energy and try not to worry too much if you can. 👍All the best Louise x
Thank you again Louise. I wish I could be as positive as you, I wasn't good at it before but this seems to have wiped it out completely. Now I'm struggling with the heat, I've always found it difficult but that seems to be worse too, also having Sjögren's syndrome causes problems with heat so a double dose maybe. I'm sweating a lot, it feels so uncomfortable. and I've had three nights of not much sleep in a row, so very sorry for myself this morning. I'm going to use a relaxation cd now and hope I can drop off for a while. Oh for some cooler weather...
Um not like you described no, but we are all different, I certainly crash if I don’t eat regularly though only cognitive, I can still ride a squillion Miles on a sniff of coffee. But think if I’ve not even missed a meal but mildly late, oh no can’t do that!
Flora, apart from the effects of PCS, many of your symptoms resemble anxiety/panic attacks. The sweating, tingling, dizziness might all be down to stress and, as you're not comfortable taking medication, it'll be difficult discerning which condition is responsible for which symptoms.
Just try to bear in mind that panic attacks can cause severe light-headedness (I was hospitalised on a few occasions when I couldn't stand up or get my breath, until I was diagnosed and treated) but they don't hurt you, other than psychologically.
Try your hardest to push a little more each day at your boundaries by (as you mentioned yesterday) taking a walk around the garden & staying out a little longer each day (though not the best time to be outdoors during this heatwave !) But generally try to refuse those scary feelings by showing your fears & symptoms who's boss...……...not easy, but do-able with a balance of persistence and rest.
And talking here might help. Fear is worsened by keeping it to yourself and weakened by sharing ! I wish you well m'love……….. 🌷 Cat x
Thank you Cat. Yes I'm sure some of the symptoms are due to panic/anxiety -having a bad time with that this morning. But there is also a pattern of needing to eat before mealtimes too, last Kevin low blood sugar episodes - presumably part of my brain is very confused. As I said to Louise I'm struggling with the heat as well and feeling tired and miserable this morning, and yes fear too. I'm going to try to get a proper rest now. I just wish it would cool down a bit..
I really do empathise Flora. Whilst I love warm sunny weather and seeing people picnicking in the park etc., this heatwave is too extreme for so many people. But for those of us with an already foggy brain after brain injury, 30 degrees can cause absolute misery.
Hope you're feeing more rested now though. I find it's actually cooler outside in the shade than indoors (even with a large fan) as there's a really pleasant strong breeze here in NW today. Hope you find a cool spot !
I just noticed a mistake in my last post reply, sorry! I can't work out what I meant to say there. But wasn't quite with it then!
Yes more breeze here too, so hopefully the house will cool down a bit. I did feel bad this morning, very wobbly when I eventually got up...
I've just been asleep for about an hour in a bedroom which only gets sun in the morning, so it's reasonably cool.. Although I've just come over all hot again :(. I did go out in the garden yesterday evening , but found that the fresh air made me a bit dizzy!, maybe because I've been inside so much recently. And I was very tired.
Oh and on top of everything else I've now got diarrhoea, with bad gut pain, no idea why - the heat perhaps? I don't really need this...
A question - at what point of feeling ill with PCS symptoms should I see a doctor? I saw my gp on Wednesday because I felt quite unwell, and he was fine about it, quite reassuring which I guess was what I wanted, but not much he could do. Fortunately he's very understanding. Sometimes it's all so scary I just want someone else to take responsibility... for a few minutes this morning I thought about ringing 111, but I know they'd just tell me to go to A&E, which would probably make me feel worse. So I'm still here, hoping for a better night at least.
I can't be ill next week, I have an ENT appointment at the local community clinic on Monday, and then the fracture clinic at hospital on Wednesday. I can't miss that, I should have gone last week and if I don't get there the consultant can discharge me for non- attendance. I'm trying not to worry about it, I know it makes things worse, but I'm not good at staying positive.
Try to bear in mind that 6 weeks simply isn't enough time for a bruised brain to stop hurting whilst struggling to regain its former capacity. Other damaged organs can mend pretty quickly, but they don't have the delicacy and complexity of the brain which, after a concussion, often needs weeks or months of recuperation.
It's a time for immense patience I'm afraid Flora ; healing of a bruised brain can't be rushed but should eventually recover with rest, good diet, gentle exercise and lots of water. I had to follow a strict regime of drinking 2 litres of water daily in hospital, after coiling for a bleed on the brain, to keep my brain hydrated (very important in promoting healing...………... and even more so if you're losing fluid through this crazy heatwave).
You'll get there m'dear. Just remember that, although the passage of time is frustrating, time is the main player in healing that poorly brain of yours, so let it do its work 'cause it can't be rushed...……… xx
Thanks Cat. Frustratingly after quite a good day yesterday I had a bad night, so have been feeling rough all day. I just can't cool down for long at a time. I'm trying to drink plenty, gp advised having dioralyte instead of plain water to compensate for all the sweating, which is pretty unpleasant. I had to go out for my ENT appointment earlier but am now off to lie in a cool room for a while. I just read that the heatwave may last another 2 weeks - oh dear... thanks for your encouraging words x
I suffer from similar symptoms. Some of it is side effects of the medication, sometime it can be attributed to anxiety, but I find that, like others, I can manage better if I have a regular eating pattern and drink plenty of water.
Thank you. I drink lots of water, I have Sjögren's syndrome., an autoimmune condition which causes among many other things dry mouth and eyes. My gp has suggested drinking dioralyte as I'm sweating such a lot at the moment. I
Hi Flora. You are only 6 weeks into PCS-this is a tough time. I too had issues with concentration, dizziness, balance, etc. Unfortunately, thus is PCS. The symptoms are different for everyone. PT and OT helped me tremendously!! They have gotten me back to almost me. Your brain will take time to heal. I hope you are resting it and you are feeling better soon. There are also medications that may help you. I have never been a medication person and put off for two weeks an anti depressant. When I finally took it-it was like magic my balance and speech improved tremendously. It was explained to me like this- your brain was shaken up and caused the chemicals to shift around and change. The medication will help with getting things back to normal. I hope this helps!
Thanks Fitz5. Yes definitely a tough time - I'm trying to rest the brain and be patient, but it does get frustrating, and sometimes quite scary. But I think I've finally accepted that there isn't going to be a quick fix for the problem, which I suppose is a start - I hope my husband can come to terms with that too as he's not finding it (or me) easy to cope with. I'm keeping an open mind about antidepressants, didn't get on with them in the past, but will see how it goes.
Hi again Fitz5. Can I ask, what anti depressant do/did you take? I'm still not keen on the idea, scared of side effects, but my anxiety has got really bad, just feel as though I can't cope, so maybe it's time to think about trying something. Thanks
Hey there. Currently I’m on 30 mg of Nortriptyline. They started me at 10 and worked me up to 30mg. I too was hesitant but it has made a huge difference in my speech and balance. Ironically after I started it- because I put it off for a bit, I’ve since met two people with similar circumstances and this helped them too. Give it a whirl and it may make a world of difference. If not there are other meds too. I’m also on Propanol- it’s a beta blocker but is also used for headaches. Good luck and lmk how u make out!!
Thanks. I'm quite worried about potential side effects as generally I don't tolerate medication too well, (I have an autoimmune condition which may be the reason for that), but I'll keep thinking about it and talk to my GP.
Thanks. I've recently spoken to someone at the Pituitary Foundation who's advised me to ask my GP for some specific blood tests to check various hormone levels, to see if the pituitary gland has been affected as this may be causing the problems. it would be good to find out.
Hi Flora, I have symptoms like yours, first I had nothing but suddenly lost my consciousness, and I woke up after 2 hours after I returned to the consciousness, for 2 months I have these symptoms as yours and I still have Today I have been doing about 45 days since I lost consciousness and I still have this if you have if you have figured out how to solve this problem, please let me know.
Hi Illyrian. I'm still having problems with the low blood sugar symptoms, some days worse than others, but fortunately have never actually fainted. Still don't know why though which is frustrating. I've been tested and am definitely not diabetic, and have seen an endocrinologist who said blood tests don't show any hormonal abnormalities. So I'm just trying to manage it by making sure I don't leave it too long between eating - and hoping someone will eventually be able to help. Good luck!
I am experiencing exactly the same things, apart that that I'm not hungry at all. It seems that over thinking and worrying what makes me feel worst. It's very hard not to think of any other conditions not only pcs as all the symptoms matches so many diagnoses and because what I'm experiencing is really hard to handle and I've never felt like this before.
Everything single time I'm starting to have a panic attack I force myself to think that it is a pcs symptom and my brain is healing and that's what causes all these side effects. I try not to google symptoms either. I'm really glad that I've found this group as it made me realise that there are more people experiencing the same things. Also what I've noticed that after talking with my GP I become much better as if she would convince me that I'm better, I am very emotional and I realised that support is really important and decided to see psychiatrist to help me heal my emotional and depression side as it doesn't look like there can be much done about the physical side.
I also just started today antidepressants and I feel a bit better and it feels like the cloud from my brain has lifted.
I don't know why I get these symptoms - it's more of a problem when I'm tired or unwell or particularly anxious, so maybe it's stress related rather than to do with the bang on my head. And I have other health problems as well.
Sorry to hear you had been suffering. Hope you are feeling better.
TBI/concussion can cause pituitary dysfunction and that causes Adrenal insufficiency (secondary or tertiary related to pituitary or hypothalamic dysfunction related to TBI/concussion).
In mild TBI cases pituitary dysfunction resolves with in 12 months.
If your symptoms of early morning or prolonged fasting hypoglycemia persists that may be sec to brain trauma related pituitary dysfunction with secondary Adrenal insufficiency.
If your symptoms of early morning or prolonged fasting hypoglycemia persists then ask for an endocrinology evaluation and get 8 AM serum cortisol and plasma ACTH level at the same time. You can always start with baseline 8 AM serum cortisol first and if it is low then can go for plasma ACTH level as well as ACTH stimulation test.
When coupled with simultaneous measurement of basal serum cortisol, measurement of plasma ACTH may both confirm the diagnosis of adrenal insufficiency and establish its cause.
Morning serum cortisol concentration — In normal subjects, serum cortisol concentrations are higher in the early morning (about 6 AM), ranging from 10 to 20 mcg/dL (275 to 555 nmol/L), than at other times of the day. An early morning low serum cortisol concentration (less than 3 mcg/dL [80 nmol/L]) is strongly suggestive of adrenal insufficiency
Thank you for your detailed reply. I've seen an endocrinologist and had various blood tests, including an early morning one after taking a steroid tablet the night before. I've been told 'there are no hormonal abnormalities' and so discharged. The problem hasn't gone away, some days better than others, but I have other ongoing health issues too which make me feel unwell, maybe it's all linked.
I wish I knew your other health issues to solve this puzzle better,
Do you mind sharing other health issues and med you are on
Few more details to understand how pituitary dysfunction can cause secondary Adrenal insufficiency leading to hypoglycemia:
Secondary/tertiary adrenal insufficiency (from pituitary and adrenal dysfunction from TBI or concussion other causes)— These patients may have symptoms and signs of chronic adrenal insufficiency or of deficient secretion of other anterior pituitary hormones ( as Clinical manifestations of hypopituitarism). Hypoglycemia is a rare presenting manifestation of acute adrenal insufficiency; it is more common in secondary adrenal insufficiency caused by isolated ACTH deficiency from pituitary dysfunction
Hypoglycemia — Hypoglycemia may occur after prolonged fasting or, rarely, several hours after a high-carbohydrate meal .It is rare in adults in the absence of infection, fever, or alcohol ingestion. Hypoglycemia is most common in infants and children with primary adrenal insufficiency, patients with secondary adrenal insufficiency caused by isolated ACTH deficiency
Hypoglycemia is more common in secondary adrenal insufficiency. This difference is not simply due to concomitant loss of growth hormone secretion, because it is the presenting feature in over one-third of the patients with isolated ACTH deficiency.
I am six months out from a 12 ft fall and still have the symptoms you describe. I don't believe it is from anxiety, or at least not strictly caused from anxiety. I have trouble with exactly what you experience after I have pushed myself too hard, been overexposed to bright lights, constant noise, or spend more than a few minutes doing physical activity. It's like I have a specific amount of time I can be exposed to anything outside my home environment. It comes on out of the blue, and as you said, can take several hours, even days, to recover. There have been times at work ( I just started back and can only do 2 hrs on, take an hour break, then 2 hrs on) when an hour in, I have to go sleep in my car for several hours just so I have the energy to drive myself home. This is after months of PT and OT. If you are not seeing a concussion specialist yet, please do.
I just wrote a reply and seem to have lost it. I'm a bit confused, I thought I'd unsubscribed but just had notification of your message, thank you. I've seen a ENT consultant who diagnosed vestibular migraine and am going to ask him if I can go to the balance clinic. My gp has just referred me to neurology, so am hoping one or both of these will help. I hope you'll soon feel better.
Don't want to offend anyone, I've had some good advice on here, but I'm going to opt out now.
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