Post Concussion Syndrome shaking

[JRio]

Hello I am new to the group, I suffered a head injury over 18 months ago and was diagnosed with Post Concussion Syndrome. Thankfully after a difficult time and being unwell for months, the symptoms subsided bar odd tremours/shaking in arm from time to time. Now hardly ever. However, I had major surgery last week and was subsequently put on a clear fluid diet resulting in a sharp drop in my blood sugar. I knew my blood sugar was low, I was weak and v tired. The thing was I get a stiffening in the arm and then tremours down the right arm. The nurse came in and found me slumped in the corner with a trembling arm and difficulties communicating effectively (still able to form sentences though albeit slowly possibly slurred). I have a number of such episodes since the accident often triggered by tiredness, a shock (an RTA when someone went into the back of my husband's car), lack of fluid and in this case I think the blood sugar or lack of it. I have seen different GPs, been to two different A and E departments (one on numerous occasions) and seen a neurologist, who all say it is likely PCS. Whilst I bow to their superior knowledge, I am wondering if such symptoms and such a while since the accident correspond with PCS or may be a separate issue also caused by my accident. I would welcome any thoughts from others who have experience of PCS.

[Kirk5w7]

Hi, personally I have not had PCs I have an ABI from viral encephalitis.

I suffer from these tremors when extremely fatigued, I can control them although that in itself is very tiring to do. I take it as an indicator of just how tired I am. When I woke from my coma I had uncontrollable tremors in my right arm, which subsided as I became more aware, but it is still there when I am tired.

No one has offered me any explanations, so I take it I have to live with it. In my case I think it is nerve damage.

Yours Janetx

[JRio in reply to Kirk5w7]

Hi Janet

I am so sorry to hear what a hard time you have had and thank you for taking the time to answer.

I think it is hard to have a lack of explanation and I find this very hard. I find it quite frightening when it happens (only twice has it been really, very bad...once I was carted off in ambulance and the other time this weekend I was already in a hospital).

I do find drinking lots of water very helpful. Particularly at first when I had a mix of symptoms. A friend with a brain tumour suggested this.

I hope you manage to keep on top of them as best as you.

Thank you once again.

[ballet2385]

Dear J Rio,

Let me first say that I am so sorry for your injury and your accident. My life was completely thrown upside down by two traumatic brain injuries from two separate type of car accidents in 2016 about a month a part. I shake just like you do and I was diagnosed with Post- Concussive Syndrome on the first concussion and then on the second/second impact syndrome and the suspicion of a brain legion. My right side is the worse tremors and I feel like a stroke victim on that side. Post Concussive Syndrome in severer forms mimics low sugar and strokes. I believe there is a correlation and scientifically know there is one because of PCS effect on our central nervous symptoms. PCS is nothing knew and it's phenomenon and set of symptoms was discovered around 1939 mainly in boxers receiving multiple licks to the head/ being punched.

I find that and increase of vitamin- c and B- 12 has reduced to eliminated my worse tremors. B- 12 and vitamin C counteract brain damage and a supplement my neurologist recommends for brain injury in Folinic Plus. I also use a kale based probiotic shake in the blinder with greek yogurt of the purest strand, honey, and berries. This shaking is as bad as a person with low sugar at times. I do get low sugar and it runs in my family, but not diabetic and it increased with PCS. PCS has an effect on the central nervous system and it confuses and scatters brain messages to the nerves and interrupts the healthy electrical current between the brain and the nerve receptors. Don't suggest electrical stimulation or better known as a TENS unit. Please do not confuse with electric shock therapy, which in it's self is a lot more invasive and mind altering. TENS is just trying to reset nerve receptors and strengthen damaged nerve paths and muscles by stimulating it with a safe electrical current. However, PCS patients including myself respond poorly to this and it makes symptoms and head swelling worse and landed me in the ER like a stroke victim.

Slurred speech is a sign of severe concussion, PCS, damage to the frontal/temporal lobes of the brain that control speech- inflammation, brain lesion, tears, and tissue damage, and also subdural hematoma. Make sure you've had a head CT to rule out brain bleeds post the speech set of symptoms an MRI is helpful for people that can have them and do not have certain medical devices or surgical hardware from prior surgeries in their body ie: surgical clamps, pacemakers, pins, rods, screws, artificial joints/limbs can be contradictory, and brain aneurysm clips can't go in the MRI magnets.

Alternative testing is neuropsychological testing to test function per each part of the brain and cognitive decline from the brain itself and EEG.

The one drug that improved me and I was taking it for hives, but it does help with pain and issues in the central nervous system is Hydroxyzine. It helped my tremors and I haven't had them no where near the same. Tremors can also be muscle spasms from other injuries in ligaments, tissues, and muscles from the accident and Flexeril aks Cyclobenzaprine is good for those.

I hope this help on top of consult with your own personal physician. Try to find a specialist that is sub specialized in PCS and see them. ERs suck at treating this.

Steroids are effective on PCS flare ups- best one is a tapered approach Dexamethazone and it resets the brains hormones and helps inflammation linked to these symptoms. It is not a long term solution, but may get you on a path of managing with holistic approaches and therapy. PCS is a hard condition with much trial and error. The treatments I mentioned above got me out of ER, A and E as it's called in UK. ERs are bad for chronic conditions or complicated relapsing symptoms of TBI and head trauma and yes it's dangerous to the patients, but it's an epidemic on a global scale.

Wish you the best and remember to get with a specialist for further advise and consult- that this is not a substitute for medical care and is not intended to be a substitute in talking with your own physician. These are standards of care and treatments use by top physicians and brain centers in the US. Also, there is a nasal spray for concussions and PCOS in trials in the US for these symptoms and not sure when is expected to clear the FDA and began testing in other parts of the world. I've seen two programs on it here in the US.

With Kindness,

Kim

[JRio in reply to ballet2385]

Dear Kim

First, may I say I am sorry to hear of your accidents and all you have been through.

This is really interesting. Thank you. I think things are more advanced in the States and the understanding and treatment of PCS. I have not been given much advice except get back to normal but try and avoid further head injury and was prescribed some tablets but more for nerve damage (possibly the nerve damage may not be helping the tremours either and I am not 100% sure they were giving me my meds for this in hospital after the op (which I must stress was for something completely unrelated to the head injury). I will need to go back and have an honest discussion with my doctor, perhaps once I am a little more recovered from the operation and ask for further referral to a neurologist ideally specialised in PCS.

I will try the vitamins in the meantime. I think I was prescribed the drug for hives to try and counteract but they didn't work and I didn't tolerate them well. Someone suggested zinc and I am convinced that that helped with balance, visual disturbance, motion sickness etc.

Sorry I omitted (not on purpose) to say in my post that I had a CT scan on the night of the accident and though I think it was considered to run a second one, everyone seemed to feel it was so classic PCS it would not be necessary.

Many thanks once again and I wish you all the best with your journey and hope things improve gradually.

[ballet2385 in reply to JRio]

Yes, I had to make them repeat CT me and it saved my life. I had a brain tumor missed on 2 CTs in my young 20s and by the time they caught it I was going blind in my left eye and only one surgeon would even try a revolutionary endoscopic intranasal approach to remove it to save my life. All the other university hospitals had given up on me. I would get a follow up CT just to access because up to six months to a year after head trauma a hematoma can form. It can be missed on original imaging and it happens all the time because scans catch what has formed and not what's in the process of forming.

Thanks for the well wishes for I certainly need them. I am also dealing with recalled mesh in my abdomen at the moment from a hernia surgery post my auto accidents. It's a host of crazy in my life at the moment. I've been offered the job of a lifetime and I'm trying to piece my body and career back together on piece at a time.

Thanks,

Kim

[ballet2385 in reply to ballet2385]

As for the US being advanced it is just now getting there. However our SSA which is UKs equivalent to the disability board is insane and deny people that paid taxes out of their paychecks all of their lives their benefits from those credits of work hours and taxes. Global disrespect and misunderstanding on head injury and PCS is a worldwide epidemic, so don't feel alone. I' d rather die trying some times then to die miserable and not fight my disease back. If I'd of aired on the side of caution with my healthcare decisions I wouldn't be alive. I turned out okay. I believe in God and I've seen quite a bit of miracles in my life, so that helps.

[JRio in reply to ballet2385]

I really hope you get everything in a place where you can follow this amazing job opportunity. You sound very determined and strong and I am sure you will.

What I will say I like about the UK is our NHS. I really appreciate free healthcare and they have done loads and amazing things for not only me, but family and friends.

Thanks for all the advice, once I am feeling a bit more recovered from my surgery I will book into see my GP about some follow up and hopefully another scan.

[ballet2385 in reply to JRio]

That is a blessing. I do not have free healthcare in the US and a lot of people go without medical care that are uninsured or injured and can't work to afford the astronomical premiums. I've had friends call it quits with the US and take jobs in the UK and relocate their because of the healthcare. It's a thought some days for me. I'm in the legal profession and I do a lot for my fellow humans pro bono (free). I believe in giving to and giving back. I just want TBI to start getting as much research and advancement as cancers and other diseases.

Sad is brain traumas are becoming as common as the everyday cold.

[AnnaCL2]

I have pcs after an RTA 3 months ago. I also have anxiety which is linked and to to with the central nervous system damage and the fight or flight mechanism going into overdrive and being out of whack. I've had some anxiety attacks. I have been prescribed fluoxetine - Prozac and going to see a counsellor at the GP surgery to help manage it. I have no idea in your situation but just thought I'd share in case this resonates with you. All the best

[JRio in reply to AnnaCL2]

Thank you for your reply. I certainly think with me an element of panic can compound the attacks if you like. Once they become "full blown" I then feel a loss of control and then perhaps my breathing goes. Someone else has mentioned the impact on the central nervous system, something I had not known about. Once I am over the surgery a bit more, I will book to see GP again. I wish you well in your recovery.

[jayne_h]

Firstly, I am sorry to hear about your problems after surgery. I know in general that any surgery and general anesthetic can be a bit of a shock to they system especially in more elderly patients. Maybe that has also impacted you?

Some readers here have made comments about vitamins but it never hurts to try to use your diet to improve your recovery. Try Tina M Sullivan 's Nourish your Noggin for some recipes and tips. There are some lovely ones.

I hope you feel better soon.

[JRio in reply to jayne_h]

Sounds great. And just shows that this latest relapse appeared due to low blood sugar and so how important food is for the brain, and water obviously... I'll look into that, once I am over my op and lift more than etc., I'll enjoy a bit of cooking again. Thank you.

[jayne_h in reply to JRio]

There are also some easy ways to get energy without cooking too much. Up in the North East, there is a phone in program on Metro Radio FM called Alan Robson's Night Owls. You can listen online as well. He has a guest on the program from the US who is a doctor called Bodie. Some of the listeners were complaining of feeling tired out in the mornings, even though they had a decent breakfast. He suggested incorporating some peanut butter into their breakfasts. (If you try it, get the good ones without nasty palm oils and without added sugar). It acts as a slow energy release and fuels you for several hours. If you do not want to have it on a cracker or bread (gluten is debated in Sullivan's book and some people are allergic to it), a nice way to have it is to get some almond milk, a banana and use a spoonful of peanut butter to make a smoothie. You can also add some herbs and spices eg ground ginger. Cinnamon is also nice. A hand blender will work on this fine. You don't need a fancy mixer. I'm sure someone in your family or a friend could whip up a few glasses of this recipe for you and keep it in the fridge. Another good slow release of energy comes from nuts. Enjoy.

[JRio in reply to jayne_h]

A slight confession here... I have been known to eat (good quality) peanut butter straight off spoon. In fact since the accident... the body has ways of letting us know what we need

[3Rainbows]

Hi!

I have a very pragmatic neurologist who keeps it simple...if you see a change get it checked, otherwise don't worry.

Easier said than done I know but he did full range of heart tests, epilepsy tests, took another MRI on my brain and did about 8 vials worth of blood tests when the tremors first got bad so I trust his judgement.

After few years realised the tremors hit with bad fatigue.

Maybe get your doctor to do similar tests to give you a starting point you can measure changes from?

Good luck.

[JRio]

I like your neurologist. I don't have a neurologist (saw one once) but I do need to get back to my GP as everything had been fairly "normal" for months and this episode was as bad as the one that saw me off in an ambulance to A&E. Thank you for your reply.

[Teresa66]

Hi JRio,I had small tremors in my hands whilst recovering from PCS. I went back to work after 6 weeks, I felt 98% back to normal. I had last a week and a half back at work and had a major set back - I could hardly walk and my speech was slurred and I was finding it hard to get my words out. 5 months on I am making progress.

I have no medical background but my thoughts would be that the stress of your surgery made you have a set back and affected your PCS.

Wish you well. Hope your feeling a bit better?

[DDADB in reply to Teresa66]

Found this board by looking for PCS related shaking/tremors. I fell, hitting the back of my head in August of last year and was diagnosed with PCS. I already had tinnitus, but found the symptoms had worsened immediately following my fall. I also had a persistent that to this day has not stopped. However, one thing that took me a bit of time to acknowledge was the shaking/tremors that started afterwards.

I first noticed the tremors while at work - they had put me into an alternative job slot because I get headaches (increased pain) and dizziness after about 15~20 minutes on the computer, but I initially tried to downplay the tremors. Partly this was because I had mentioned this to the neurosurgeon that I was seeing and he didn't make any comments about it - partly because I felt like I was possibly overreacting.

I have since had several people point out the tremors and express grave concern over them, including my spouse who had never seen it until recently. The reason my spouse had never seen it is because I mostly stay at home right now - my job couldn't find another position for me via the Reasonable Accommodation route and I rarely go out unless to medical appointments at this time. However, I went shopping with my wife recently and the drive plus walking around in the store triggered the tremors, which immediately caused her concern.

I feel like I the neurosurgeon, neurologist, PCP, and other specialists I'm seeing are dismissive of this and other symptoms, so it was heartening to see others talk about their very similar issues following a TBI.

I intend to confront these providers and if their attitudes don't change, then I will change providers.

Thanks for posting your stories here, they will help myself and potentially many others.