Paroxysmal sympathetic hyperactivity

Despite most people thinking M.E is merely just a bit of tiredness, one of my worst symptoms is just the opposite. My nervous system is in a permanent state of hyper arousal, or fight or flight mode. I produce too much adrenaline whilst somehow being crushingly exhausted at the same time.

Now my symptoms seem to fit the following even though I have never been diagnosed – only with POTS and syncope (fainting). My cardiologist doesn’t really know what to do with me but the following makes a lot of sense. Hydrocephalus is associated with Ehlers Danlos Syndrome which I have so this is definitely worth following up.

Paroxysmal sympathetic hyperactivity (PSH) is a syndrome that causes episodes of increased activity of the sympathetic nervous system. Hyperactivity of the sympathetic nervous system can manifest as increased heart rate, increased respiration, increased blood pressure, diaphoresis, and hyperthermia.[1] Previously, this syndrome has been identified as general dysautonomia but now is considered a specific form of it. It has also been referred to as paroxysmal sympathetic instability with dystonia, or PAID, and sympathetic storm. Recently, however, studies have adopted the name paroxysmal sympathetic hyperactivity to ensure specificity.[2] PSH is observed more in younger patients than older ones. It is also seen more commonly in men than women.[2] There is no known reason why this is the case, although it is suspected pathophysiological links may exist. In patients surviving traumatic brain injury, the occurrence of these episodes is one in every three. PSH can also be associated with severe anoxia, subarachnoid and intracerebral hemorrhage, and hydrocephalus.[3]

When I get these episodes my temperature goes up and I BURN, literally, my body feels like it’s on fire and my face goes bright red, my pupils dilate and my heart rate goes up to around 130 bpm. It feels like being on the magic roundabout. I drip with sweat, and when I say drip I mean pouring from my scalp down my face and onto the floor in puddles. I have to bathe twice or three times a day.

I also shake and tremor like I have Parkinson’s Disease, I cannot even hold a fork. I get myoclonic jerks, my legs will spasam and jerk themselves about like they have a mind of their own (pity they don’t when it comes to walking!).

When the symptoms become too bad, I get seizures. I am on pregabalin but it doesn’t help these symptoms.

I told my doctor how bad it was getting and he suggested a low dose of Clonazepam, one three times a day to calm things down.

In the mornings I definitely felt calmer, my heart rate felt steady. I still shook a bit but I was definitely feeling no fight / flight symptoms.

Afternoons are the worst. For some reason my autonomic nervous system goes berserk and that’s when the seizures kick in and I get this whooshing / fluttering rushing up and down my arms and legs which is just horrible and no doctor has been able to tell me what it is, I just get on with it. The afternoon dose of Clonazepam isn’t really helping the situation as its not strong enough but it’s all a work in progress.

It’s really hard to control as anything like light, sound, smell and movement can trigger it off.

Cort Johnson says the following on his website:

The vagus nerve is a big deal in more ways than one. Not only is it responsible for telling the ‘fight/flight response’ to go to sleep, it’s also the conduit through which most of the body’s immune signals get to the brain and through which the brain’s immune signals pass through to the body. The anti-cholinergic functions of the vagus nerve make it a key part of the anti-inflammatory response.  Low PNS activity is associated with increased inflammation, making it no surprise that reduced PNS activity is common in cardiovascular disorders. An over-active sympathetic nervous system, for instance, is believed to skew the immune response in the Th2 direction resulting in increased antibody production and decreased protection against intracellular pathogens.  Turning the SNS down could then improve antiviral defenses and reduce autoimmune processes.

Read more: System Reset: New Way To Reduce Fight or Flight Response Found http://www.cortjohnson.org/blog/2014/08/29/system-reset-reduce-fight-flight-response/

This makes total sense to me – I cannot sleep either.

I am seeing an Endocrinologist soon about my raised cortisol so I will see if that is related to my symptoms and keep you posted!

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