Shock effect like cold shower - does anyone identify with this symptom?

[blacksnake]

Hi. I'm posting this in behalf of my son, who I look after (CFS since June 2001 at age 13).

We all know how hard it is to *really* convey symptoms to people like doctors etc. Over the last 18 months my son has struggled to help me really understand one of his symptoms - now his most limiting one. After many, many discussions he thinks he's figured out the language to convey it.

I am posting here in case anyone identifies with it. Please comment if you do.

The thing that prevents him doing "stuff" more than tiredness or pain or anything is a "shock" effect, like you would experience taking a cold shower. In fact, that's how he worked it out. One day he took a cold shower just to see what it would do. When stepping into it he had that cold water shock effect.

He came to me and said that the sensation was identical to the effect he had been trying so hard to explain to me. It happens to him constantly but fluctuates like the other symptoms (pain, tiredness etc). It is more likely to come from something that involves thinking. Like reading a book. Or listening to new music of a type he likes. When at it's very worst he is almost paralyzed by it as even simple things start giving him this mental shock. eg. Changing a volume knob, eating what is on his tray in front of him, walking outside. It is always there to some level, not always to this extreme.

When it is really bad his only defense is to numb his mind and do something familiar and mind numbing. When most sensitive he has to stay away from anything new even different food. When I take him for drive I can't go to an unfamilair area.

He describes it as "attacking his brain" and has wondered whether it is something outside his CFS. But it correlates too closely with other symptoms and triggers to be something else.

Does anyone else identify with this?

Peter W
Melbourne, Australia

 

[Wonko]

yes....ish

it's more intense than a cold shower but similar style shock reaction and sensation I suppose

it's also similar to being subjected to extremely loud alarm while extremely heavily fatigued - but that might be just me as my first experience of the sensation was probably down to a fire alarm test - essentially immobolised me (I could move but achieved nothing and left me unable to think) for 15 mins or so - with predictable results during an alarm test.

I cant even figure out how to use a sock in that state, let alone figure out how to use a door handle or stairs.

Practicially anything can set it off, with me personally it's easiest to prevoke with self examining thoughts (eg answering questions for welfare forms is a very efficient way of setting it off)

 

[blacksnake]

Have you found anything to help and does it fluctuate?

 

[3CFIDS@ourhouse]

What your son has described is for me related to sensory overstimulation or my brain working very hard to do something that should be simple. Listening to someone talk, especially if there is background noise, listening to music, especially with headphones or earbuds, seeing the light and shadows when riding in the car. When I'm the most fatigued, even thinking about having to get up and brush my teeth, for example, can make me feel like I've had a shot of adrenaline. Some people describe it as a buzz or vibration. When it's bad, the only thing I can do is shut out all light and sound and be completely still lying down. I think there's no question CFS/ME has in some way attacked our brains- there are variations, but many, many similarities. I don't know that that will make him feel better about it, but sometimes just knowing other people understand makes you feel a little less alien.

I'm so sorry your son is sick. It's terrible to watch your child suffer. My daughter got sick at age 12, two years after I got sick and a year after my husband. I have the most hope for these young people, though, and believe some breakthroughs will come soon! Take care!

 

[blacksnake]

Thanks for your confirmation and kind comments. As to lying down quietly, he no longer has recourse to this. Lying down accentuates the tinnitus and restless legs = more agitation. No rest at all. I hope your health doesn't degrade to this level.

Thanks again.

 

[ixchelkali]

I don't think I've had quite what your son describes, but his description reminds me of the "brain zap" sensation that many people experience when they are going through withdrawal from certain antidepressents, such as Effexor (venlafaxine). Effexor increases norepinephrine and serotonin. Since norepinephrine is secreted by the adrenal glands, and adrenal function is sometimes compromised with ME/CFS, I wonder if your son might be experiencing a drop in norepinephrine, similar to going off Effexor. I don't know, just a thought.

 

[blacksnake]

Gershwin,

Your clue is actually very helpful. I didn't know that about Effexor withdrawal effect. It does sound the same. In fact it might explain one other thing:- that the most effective temporary reversal of the problem comes from alcohol. He avoided this for years because of the negative effects (as with so many CFS'ers). But recently he has taken it in desperation. The negative effects are probably still there but what he notices is that "everything seems normal for a few hours". agitation decreases (obviously), the shock effect abates. Helps him to feel more in touch with reality. Only for a few hours.

Anyhow I had wondered whether that effect was the temporary Norepinephrine level increase with alcohol. I am going to look up what you said.

Thanks.
Peter

 

[currer]

I used to get an adrenaline type reaction when I was feeling weak. It used to wake me up at night too.
It has stopped as my health has improved over time. I never found out how to cure it, in fact it used to occur in association with sensitivity to antidepressants - so I had to stop them.
The only help I can give is to say that as my general health improved, so this sensation has gone away. I never get it now.

 

[Bob]

Hi blacksnake,

I've not experienced those symptoms exactly, although I do get strange neurological/brain symptoms at times, such as being cognitively over-sensitive, over-stimulated and feeling that my brain is over-stretched or is trying to shut down, along with all the usual things like brain fog and memory problems. But I have a fluctuating thyroid disorder, so it's hard to know what is ME and what is thyroid.

In some ways, the neurological symptoms that you describe, sound a bit like what I expect people with an autism spectrum disorder to experience (although I know very little about autism and aspergers). But I'm not suggesting your son has aspergers'... I'm just commenting that the neurological symptoms do not sound unique. It wouldn't be surprising if there were similarities between ME and the autism spectrum of disorders because they are both neurological diseases. Judy Mikovits has even reported them both running through the same families, and linked both of them to XMRV.

The best thing that i've found for immediate help to relieve the over-stimulation of my brain (including helping stress, agitation etc), and to reduce long term cognitive symptoms of ME (brain fog etc), is Clonazepam/Klonopin.

To help dampen down over-stimulation, I take one Clonazepam tablet occasionally, whenever needed.
And to help with long term ME symptoms, such as brain fog, I take a quarter of a tablet daily. (But not all the time... I have breaks from it.)
Clonazepam is the only drug or supplement that's ever helped my ME.

There's a few Klonopin threads on the forum if you are interested in reading more about other people's experiences with it.
It seems to be very popular.

Best wishes to you and your son.
Bob

 

[Mya Symons]

I am not sure if this is true for CFS, but people with Fibromyalgia often wake up in the morning with one sense seeming as if it is extremely hightened. For example, on some days I can smell really well and scents really bother me. I can even smell what my neighbor upstairs and down the hall is cooking. Other days sound is heightened and I am constantly asking my husband to turn down the T.V. And sometimes I wake up and I am not able to handle bright lights. Further, some days I am very sensitive to touch and can't handle people touching me in any way. I think this may happen because different parts of the brain or nerves are overstimulated.

Perhaps your son is experiencing too much stimulation to the nerves or brain and is having a hard time adjusting? Maybe in time he will become used to this and it will get easier. I have learned how to ignore the intensified sense when I need to. However, this may be something different alltogether.

 

[Derekthecat]

Hi Blacksnake,
I realise this is an old post so it may be things have changed but I'd love to know how this panned out? The neural over stimulation is something I've experienced, very similar to what you're talking about. The interesting thing is I've also found alcohol (taken in desperation) does calm it down, a bit like a stiff drink can wake you up if you're completely fried and strung-out. Did you ever get anywhere with this symptom?

 

[Luther Blissett]

Hi Blacksnake,
I realise this is an old post so it may be things have changed but I'd love to know how this panned out? The neural over stimulation is something I've experienced, very similar to what you're talking about. The interesting thing is I've also found alcohol (taken in desperation) does calm it down, a bit like a stiff drink can wake you up if you're completely fried and strung-out. Did you ever get anywhere with this symptom?

Hi Derek, there is a website where you can check out if it is a side effect or interaction with any medication taken - http://rxisk.org/ .

Hope this is some help to you.