My son was decompressed in 2015
Every 2 to 3 years he gets a flare up
His his complete anxiety with struggling breathing
No meds work
It seems to aggravate it
Feels out of body experience on meds but they don’t work anyway
I have a theory
Could a nerve or vein be inflamed or even the celebrella tonsitlls as this yr breathing and emotional part of brain
So that is why meds dont work as no chemical imbalance
Looking for alternative therapy
Going to cranial massage tomorrow
Hey V
Neurology is one of those things where everything needs to be taken into consideration when any assessment is made. Could it be the surgery? well, yes it could. Could it be the medication? Well, yes it could. Could it be an inflamed nerve or vein or celebrella tonsitlls? Well, yes it could be and it could be a combination of each and every one of them. And this is why an assessment by a fully qualified neurologist or neurosurgeon in combination with all of his scans and reports.
Some meds can alter chemical balances within the brain, but some also assist with electrical signalling in the brain and some can assist with blood flow in the brain and each and every one of them can vary depending on the patient. And believe me, it can be a real hassle in trying to work out which meds regime may benefit the most. Lots of trial and error. It most definitely is VERY individual and not a ‘One-size-fits-all’ scenario., what maybe a miracle cure for one, maybe of very little use for another. Personally I was trialled on all sorts of meds trying to find what works (and what doesn’t) I was UP I was down I was high as a kite and I was YUCK. I was on that many tablets I almost rattled like a pill bottle when I walked. But none of them were my key. But for some medication can be that miracle, I just wish I was one of them.
My final bit of advice… …If someone suggests an option, give it a go. That suggestion you reject out of hand and ignore could well be his ‘key’, so trial them all. As I’ve often said “If someone suggested facing north, hopping on one leg, singing ‘Kumbaya’ would help, I’d give it a go”.
Merl from the Modsupport Team
I agree with you
If you told me to stand naked on a busy road - I would
From your experience - do you think he could just be having dysautonomia and these are what are his flare ups?
Any thoughts and treatment you know of - who even diagonises this?
THANKS
VANESSA
Hey Vanessa,
This is only something that only a fully qualified neurologist can offer advice on. Now I say ‘advice’ because dysautonomia is one of those conditions that is often defined by an ‘elimination theory’ ie if it’s not ‘X’ and it’s not ‘Y’, then it must be dysautonomia. Some define a symptom of dysautonomia as a minimisation or a reduction in sensation, but by exactly the same measure some define it as an excess or extreme sensation. Whose right?
Yes, they maybe correct, it may not be ‘X’ or ‘Y’ but in using this X-Y theory, they also need to eliminate A,B,C,D,E… not just ‘X’ and ‘Y’. A common theory is that dysautonomia interferes with the body’s automatic processes via the Autonomic Nervous System (ANS) ie Pupil dilation, heartbeat, breathing, body temperature etc And it seems, unlike many conditions, there are no concrete or set criteria for a clear diagnosis of dysautonomia, but rather a combination of symptoms. This can all make a clear diagnosis extremely difficult.
As a parent, we want, no, we NEED answers and all of those ‘Could it be…?’ questions are normal. But in all honesty you can drive yourself crazy going over and over all of the options. This is why I suggest following through with the medical recommendations on treatment options. Trying to pinpoint a moving object or variable symptoms can be near on impossible. I know this because I’ve tried. I often explain it like this ‘I’ve had more diagnosis than I can count on my fingers (and toes)’ Rather than pinpointing a specific condition, giving it all a name, I now try to manage specific symptoms.
Merl from the Modsupport Team.
I was thinking the same
Who do you see for this
Neurologist or cardologist?
He is dizzy and in flight mode?
I saw both and trialled both’s suggested treatment plans. I did this because the cardio said ‘It’s not your heart, so it must be your head’ and yet the neuro said ‘It’s not your head, but it could be your heart’.
But, be warned, once the other options have been eliminated, then it can all be labelled as a psychological issue which is (again) frustrating to say the least. None of us choose to be in this position, but here we are. We often go to these medical professionals for answers, but when they don’t have ‘the answers’ the easiest answer is psych. If this occurs do not take it to heart, often it’s rather the case of ‘We don’t know’ but they don’t like to admit to that. It has only been within the last 5yrs that my Dr’s have FINALLY admitted they really don’t know everything about the brain, prior to that their view was ‘We operated, we fixed. It’s nothing we’ve done. So it must just be YOU’ GRrrrrrrr
Merl from the Modsupport Team.
Sorry that I am asking so many questions.
What do you do - what do you take?
How do you function?
THANKS VANESSA
Please, don’t be apologising for asking questions. EVER. We ALL have questions on this journey I can assure you and anyone who tells you ‘it’s easy’ has never been here. The wouldn’t know.
Function? Hmmm. I function as best I can. Prior to my last neurosurgical intervention I was working 40+hours/week. That was back in 2013 and that year I had 3 neurosurgeries, since then things haven’t exactly gone to plan (Well, not my plan anyway). My plan was to be back at work, well that didn’t happen.
My former role was as a Living Skills Teacher, teaching people with disabilities independent living skills. It was a fairly high pressure role, often dealing with people with very challenging behaviours. So, patience, tolerance and understanding were a must. Post surgery, that all vanished. I had no patience with myself let alone others, I couldn’t tolerate others and as for understanding it was gone too. It’s taken a lot of time to get back to where I can accept where I’m at. I’m not happy about it, but this is the reality of it all.
My ‘new’ keyword has become ‘Management’
Time management, task management, medication management, rest management and pain management. And each and everyone of them can and does have an effect on every other one of them. It’s like trying to juggle 6 bowling balls all at the same time. You know damn well your going to get hit by one of them at some point.
I have had to relearn all of my tolerances. If I do too much today, I’ll be paying for it tomorrow. So I have to regulate what I do and for how long. There is a theory known as ‘Spoon Theory’ in REAL basic terms spoons are energy. If I have 10spoons for the day I have to decided how I’m going to use those spoons. But if I use 5 spoons in just waking up, showering and having breakfast, that only leaves me 5 spoons for the rest of the day, so I have to carefully manage what I do or by lunchtime I have no spoons left. Now, I can push on through and use tomorrows spoons, tomorrows energy to complete a task BUT that leaves me with even less spoons for tomorrow. If I do that for a couple of days I can wipe myself out chronic bad and find myself bedbound. So management is very important.
Well, that depends on what I’m trying to manage. I take a few different medications. For pain I take an opiate. I have a few different strengths some lesser and some wipeout (That is they wipe me out), I need a bed in a darkened, silent room if I’m taking the ‘Wipeouts’ but then with the lesser I can function with the pain just under the surface. The pain is still there just at a lower level. I also use medically prescribed Cannabis, it assists me to function without the pain being the centre of my focus.
So, function? well, yea I do function, just not at my former level and I find that extremely frustrating. It used to be I had 2 speeds. Full tilt and stopped. I’m lucky to even get to 1/2 speed now and still with all the management I ‘try’ to do, I still don’t get it right.
Merl from the Modsupport Team.
Merl is an amazing person, he neglected to mention that part. Yes, he manages all of those medical challenges he told you about. But he also helps manage a network of 40 rare disease communities, and he shares his considerable knowledge with many members, especially in the communities where members have concerns and questions related to brain issues. Like this one.
Vanessa, I’m Seenie, and I am a also member of the ModSupport volunteer team which helps community moderators keep their communities safe and supportive. We also help out with support and guidance when we can – Merl does so mostly in the areas of brain injury/trauma. The other members of our team are Sharon (our scientific and medical information source), and TJ (who heads up our medical fact-checking team). Me, I’m the emotiona/social/counselling department on our team of four. BTW, if you really want to be amazed, TJ is in the west of the USA, Sharon is near the east coast, I’m in Canada, and Merl is in Australia. And we are all volunteers. Isn’t the internet amazing?
We’re glad that you found us, all the way from South Africa, and we’re glad to be able to help. Please don’t apologize for asking so many questions! That’s what makes Ben’s Friends a special place to be.
S
PS When we changed platforms a couple of years ago, every member’s profile “fell off” the proverbial moving truck. Now it’s our turn to ask you a question: would you mind filling in your profile again? Click here and you should go straight there. When you’ve filled it in, scroll to the bottom and tap “SAVE”. Thanks!