Experiencing shaking?

Has anyone else experienced occasional shaking, like your freezing cold?

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Ohh yea, lots.
I get the shakes something terrible especially on my right side. I get what I call ‘the tingles’ in my arm and if I do anything physical I get the shakes afterwards. I’ve spoken to the neuros about this but as my temperature control is a mess (ie I sweat profusely when I get cold and the heat knocks me really bad), they have pointed to this as being an associated cause/effect and yet I shake no matter what the temperature is. So I’m a bit confused on how they can say it relates. It was suggested that there is a procedure I could have to severe the sweat glands, but that’s merely dealing with a symptom and not dealing with the issue, so I’ll still have to manage the shakes.

My ‘shakes’ are not constant which has made a clear diagnosis difficult as the dr’s haven’t seen it, so they look at me like I’m imagining it or exaggerating. My wife has seen it and has verified to the neuro that she’s seen it but they all seem doubtful or say things like ‘Some people shake constantly, so it can’t be that bad…’, which doesn’t help at all.

Merl from the Modsupport Team

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Makes one wonder as to which part of the brain has been damaged. Can the doctors figure that out?

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I’m sorry that you’ve been experiencing that but thank you so very much for sharing. Although my doctor is a very great surgeon she’s never been the best at sharing possible side effects from the surgery. So anytime I hear that someone else has experienced the same things it’s very comforting. Now I went down the road of maybe it’s the vimpat I just started taking because ever since I started it it makes me jittery, wakes me up at night, gives me pins and needles and yesterday the whole body shaking. I spoke to my neurologist and she said let’s stop taking it and see if that all goes away. (And lets hope we don’t get anymore seizures) Apparently a lot of after care is trial and error. Please keep me updated if you learn anything new

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Ohh HELL YEA.
They really don’t know. They know that certain brain regions can affect certain functions. The former thinking was that these regions had sole control of functions, but it’s now been shown that differing regions of the brain all interact with each other to produce the function. So to say that a certain surgery is going to have a particular, definite side effect is impossible. When reporting my symptoms to a neurologist I had the comment ‘Well, that shouldn’t be happening…’ but it was. I’ve tried their remedies everything from Botox to a TENS (electric pulse device) and everything in between. All of their medications, many of which either had me ‘High as a Kite’ or VERY low. But I’ve trialled them all and none of them have been my ‘key’. Now, don’t get me wrong here, some treatments have been of some benefit, just not the answer I’ve been hunting for.

I have to manage the best way I can. Some times that’s with medication, sometimes that’s with rest in a dark, SILENT room, etc, etc it truly can be a case of trial and error and error and err… I’ve given up on counting how many people have told me they have ‘the key’, be that dr’s or friend’s or people who know others who ‘went through exactly the same thing’. Everybody’s ‘Key’ is very individual. What works for me maybe of no use to you at all. They may have found THEIR key, but that doesn’t mean it will be yours.And that line of ‘went through exactly the same thing’, nobody goes through ‘exactly’ the same thing when it comes to neurosurgery. Some people can have what seems as a miraculous recovery and yet for others it can be anything but and they, the medicos, can’t really say, with any great surety, who is going to have side effects (and which side effects they’ll experience) and who isn’t. They may hope, wish and pray that everybody comes through OK, but they can’t guarantee it.

As one dr put to me rather bluntly “What do you expect… you’ve had brain surgery”

Merl from the Modsupport Team

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I hope gettting off the new meds helps. I too tried various medications in the beginning, some were for epilepsy, some were for Parkinson’s. Most of them were down right awful. One in particular had me and the new pup not liking me. All to control a tremor. I learned the tremor doesn’t effect my quality of life for the most part, so I quit trying their remedies.

@Merl the beauty of the brain having different regions to share the load is the best of news as it means that there is always another part that can take the load of the damaged area. But doesn’t it remain that there are certain areas that have primary functions like frontal lobe, brain stem (we used to call it the old brain), hypothalamus, pituitary gland, etc?
.

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Firstly Moltroub, I have to say I am in total agreeance with your sentiment in regard to remedies. Some times the poison is worse than the problem. It would be fantastic to be symptom free (I hear some of you laughing in the background). And for some the medications maybe the answer, but for some they just won’t. Some of the side effects can be nasty, nasty and it can be a case of weighing up benefits vs side effects. I have one such medication review coming up next week. I have mine reviewed annually “What am I taking and why?”

Yes, most definitely Moltroub. I had to attend a Pain Management Clinic at our biggest hospital. They spoke about the resilience of the brain. There is a process known as neuroplasticity where (in VERY basic terms) another part of the brain can take over the functions of the damaged portion. There are some online ‘skill testers’ that can assist with neuroplasticity.
I am not a neuro, I’m just a patient so how the frontal lobe, brain stem, hypothalamus, etc work or function in relationship to each other is WAY out of my league. I have (a little) understanding how these structures of the brain work individually, but how it all works together.??? Nah, no clue.

I have worked with people who have had specific damage to their frontal lobe and the behavioural issues became a problem. They had very little inhibitions and often displayed inappropriate behaviours. The brain stem (re Old brain) runs most of our involuntary systems that keeps us alive basically. The hypothalamus is a bit like the control panel, receives sensation coming in and tells all the other bits what to do, including the pituitary gland. Now how all of that works together, I have no clue.

I do know what can happen when some of those systems go haywire. Both my hypothalamus and pituitary were involved in making me symptomatic for many years, but those symptoms were never lined up. There were some obvious signs something was amiss, but at the time I was simply labelled ‘A @#$# of a kid’(A technical term of course), and OHH BOY…did I ever live up to that label. :stuck_out_tongue_closed_eyes:

I doubt the roles of the hypothalamus and pituitary could be taken over by another structure, but the learning and re-learning of skills of body function can be re taught. But then I’ll say it again, I certainly am not a dr.

Merl from the Modsupport Team

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I have had tremors for about a year or so, but my surgeries were all in 2012. I saw a neurologist recently and she only looked at one set of old scans, and said my coiled (and PEDs) annie is touching the thalamus (?) and causing the tremors. No new testing, didn’t consult my surgeon even. Gave me a prescription for Propanalol to try. After two weeks, I finally got used to the pills and feel like they are working. I skipped taking one the other night and woke up in the morning very shaky. That makes me sad to think I may need these pills forever now…but the shakes were affecting my life. I will talk to the neurologist again in December and discuss the matter further. I still don’t get how I could be fine for 7 years and THEN get the shakes, and be due to the aneurysm? Don’t get me wrong, I just mean I didn’t have the shakes, but I’ve had all manner of other side effects from the surgeries (memory loss, short and long term, aphasia [loss of words], headaches galore).

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Sarah_D’s experience sounds very familiar. Although, I have just learned to live with the shaking. I am lucky that it doesn’t affect my day to day living too much and I just get embarrassed by my shakes in public. It’s just pay of the me now. If it gets in the way get a second opinion and maybe a various medication.

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Seems odd that she wouldn’t order a new scan. I wonder if she is trained in reading scans? My Neurologist now and the one I used to go to said they were not trained and relied on the Radiologist findings. Though my new one was very excited he received scans from my last MRI. Maybe reaching out to your Neurosurgeon wouldn’t hurt.

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Hey Sarah,
Neuro’s all work on theory with lot’s of ‘…well, it could be’ or ‘well, it might be’.

If something is interacting the thalamus they can theorize functions of the thalamus may be affected.
The thalamus is a gland in the centre of your head and the hypothalamus sits underneath that.
I have a growth interacting with the hypothalamus and I’ve had many, many theories, from many differing neuros, endocrinologists and other specialists on the ‘how and why’ of my symptoms. Many of these ‘opinions’ conflict with each other, but each dr is convinced that their theory is the correct diagnosis and all the other opinions are incorrect. I have gone along with each theory and treatment regime. In my view one of these treatments might just be my ‘Key’, so I’ve given every suggestion, idea and theory a trial, but alas I’m still to find that ‘Key’.

For me, now, it’s all become a case of ‘management’. Be that medication management, be that trigger management, be that activity management and of course pain management. We are the only one’s who truly know our own pain and we are the one’s who have to manage it all. All the theory in the world cannot explain the realities of it all. We have to manage the best way we can for us. Not for the medicos.

Merl from the Modsupport Team

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