hey guys,I havent been on this page for a while.Im really struggling to deal with one of my symptoms and sometimes it brings me to tears.I get extremely hypersensitive skin.The slightest touch sends me nuts.I can feel fine hair touch my skin and it feels like a bug is crawling on me but when I look there is nothing there.Its driving me insane everything feels irritating even hugging my husband I really hate being huggged or touched its that bad.I only shower for 3 minutes sometimes less the water is lukewarm I use a fragrance free soap free wash and I only use a little bit but some how I am still bloody itchy.Its like tiny pin pricks all over my body.Can anyone shed some light on this situation if you have any suggestions that would be great.
Hey thebrainsurgerychick,
It’s been a while, good to see you’re still around. A sensory hypersensitivity is not unusual. Personally, I had an audio sensitivity, I was hearing sounds others couldn’t hear. My wife thought I was going crazy, I could hear this whirrring sound, she couldn’t hear a thing. I had a friend come over, he couldn’t hear it It was coming from the wall in my house, so I climbed up into the roof space and went hunting. Sure enough I found it, it was part of the air conditioner system that needed replacing, no one could hear it, but my super sensitive hearing picked it up.
When I walked I could hear this whooshing, like my shoes were full of water. Whoosh, whoosh, whoosh with each step. Very disconcerting.
It was explained to me that the nerve fibres, which had developed prenatal(before birth) and matured around the abnormality for years, had been disturbed. They don’t like being disturbed and often misfire, giving me no end of issues. It was suggested that it may be a form of neuropathy, so I trialled acupuncture, a TENS machine, botox and hydrotherapy. There were benefits from each therapy but none of them were MY answer. One of them could be yours, it can all be VERY individual.
Over the years (and yes, I do mean years) some of my sensitivities have mellowed ( I say ‘some’ because the sensitivities in my eyes have not decreased). Now, whether that’s because the sensitivity has lessened or whether my body has adjusted to those ‘new’ levels of normal, I’m not sure. But trying to find a level of ‘Normal’ is near impossible, it all fluctuates for me.
Hope it helps
Merl from the Modsupport Team
I hear you. Touch to my head, back, shoulders, feet, hands, or even having my hair touched which pulled my scalp used to be painful and irritating. I remember touching a screen for less than a minute would ache my hands for two days! Getting a haircut was an ordeal where I had to schedule the next day as a recovery day. It made no sense. Crazy you say. Doctors were of no assistance other than obliquely or not so subtly suggesting mental health services.
You describe situations that are unique to you yet seem to stem from the same cause as me. I guess you will decide on that.
My research and recovery revealed that the nerves themselves were not the culprit, but it was how my Chiari brain was processing the information that sensory organs of all sorts were sending to the brain. I found that my symptoms worsened after surgery. Some people’s brains can get back on track with surgery alone but some, like mine and it would seem yours, needed some help to learn how to NOT perceive stimuli as pain.
Using my hands as an example, I got the graded motor imagery programme from NOI. Last I looked into it, you can purchase the hand app for $10. I had to start looking really quickly at an image of a hand and indicate if it is a left or right hand. I did not even use the buttons to start as that was too painful. This is left-right discrimination at a sub-conscious level. How long the session and how many times a day is controlled to keep symptoms controlled - maybe not gone but not flared up. There will be flare-ups. There is tracking and progress information built into the app.
This left-right discrimination is the start to how your brain perceives your own body parts. When that process is disrupted (cue the Chiari brain for us!), and the brain gets information that does not make sense, the brain perceives stimuli as pain and irritation. There was a whole series of difficulty levels with the left and right at that sub-conscious level, and then I would look at the image for longer, then look at pictures of hands doing activities while I imagined what that would feel like. Eventually, I used mirror therapy for a variety of different body parts, then on to controlled real-life activities.
This process can be done for any body part. There are NOI apps for a variety of different areas and modification to the process are always possible. Imagination is the limiting factor.
Retraining the brain to perceive information like the rest of the world is possible. Amputees with phantom pain and Chronic Regional Pain Symdrome clients can and so can Chiari folks with crazy pain. Check it out, ask some questions! If this therapy approach seems unlikely to help, I always think back to the really bad times when pain was nasty and my world was shrinking away to nothing and wish that someone had told me about motor imagery sooner. Better yet, that it was part of recovery therapy (or at least assessment for body imagery difficulties) for all Chiari folk. one can dream… So there you go - and anybody else reading this with crazy pain that makes no sense.
Hey, BrainSurgeryChick,
I have dealt with hypersensitive skin all my life - but didn’t realize it had anything to do with Chiari’s until I was nearly dead from it. I’ve always hated showers, (now I only sponge bath) hated rain, hated being touched (why I never got married because what torment that would have been!) hated massages, hate ‘rough’ clothes, (now I wear a lot of fleece), etc. I perm my hair to keep loose strands from tickling. The list goes on & on. For most of my life, I just thought everyone was like me - until I found out hardly anyone was very sensitive to touch. I am hypersensitive to sights (bright light) and sounds as well. I hear the slightest breeze shaking the few leaves in the winter, and everyone around says, “huh?” I need sunglasses on cloudy days.
For me, the surgery has helped immensely. At least I can tolerate most touch until the evening. Elastic and hems usually provide very sharp itches all day long, though. Sometimes changing into soft fleece - with soft seems and ties instead of elastic - helps. Also, to keep the hypersensitivity down, I’m on a low dose of amitriptilyne (Which I am going to have to give up because the manufacturer is no longer making it. Maybe I’ll switch to noritriptilyne.) BUT… if my nerves get over-the-top bad and I can’t tolerate myself, I do have a prescription of Lorazapam (tranquilizer) which REALLY does settle the whole world down for my fraying nerves. I must be careful about not taking L too much, though. It is addictive. Before my surgery, I was on it for 5 years (.5 mg a day) to keep the sharp edge off the pain. Now - if I take the smallest half tablet to stop my nerves from fraying, immediately the pain is that much worse the next day. But, if I’m about to lose my mind from Chiari nerve torture, a dose of L does quiet them down.
Omg! I could not believe how relatable this sounds! im worse in the evenings to!.Im so paranoid like I dust mop vacume clean everything wash everything have luke warm showers use a mild fragrance free soap free wash cover my self from head to toe in moisturiser but still! get these uncomfortable twitches that feel like popping rocks under my skin.It really takes its toll emotionally cause it disturbs my sleep and it gets worse if im tired it a vicious cycle.Can you get your medications over the counter or do you need to see a doctor first?
I too have many of the same symptoms. Showers are torture! My kids couldn’t hug me. I also seemed like I am hyper sensitive to things and startle easily. It is like my nerves are on high alert. Sounds like a lot of us have this problem.
Hello, BrainSurgeryChick,
Pretty much - yes. The medications I mentioned are by prescription only. Amitriptyline and Nortriptyline are both former tricyclic antidepressants that they have since found work very well in blocking chronic nerve pain. For some people, they don’t work as well as Gabapentin - which has always served as a nerve-blocker. Especially for diabetics. I tried Gabapentin for a while when my Amitriptyline was back-ordered. But, my liver (which is also permanently damaged from hepatitis X) became horribly inflamed. I know my liver has not complained about Nortriptyline, 'cuz I was on it once before.
I’m curious about your twitches that feel like “popping rocks.” Are they benign fasciculations? Is it like a muscle fiber snapping and jumping? (I have 2 of them going on right now. 
) I’ve also had these twitches all my life. I remember my dad telling me they were caused by worms be-bopping under my skin. I believed him for years. Crazy. Before my brain surgery, I had some twitches that lasted 6 months or more. The worst one was behind my ear that went for 18 months non-stop, and I was just about to have the nerve cut to stop it.
With that said, the fasciculation twitches I find much more frustrating to stop. All I know is what triggers them in me. Caffeine and sugar will usually provoke a ‘twitch fit.’ I love my coffee and Pepsi. If I treat myself to both beverages - which really stimulates lethargic brain sinapses - then I must endure the twitches as well. The nerve blockers don’t seem to do anything much. Lorazapam really does, though. In the last couple years, I have been getting one of those twitches in my deep inner ear. I can HEAR it snapping and twitching, but can’t feel it. That is the one twitch that will make me nearly insane. I can smother it with Lorazapam (Ativan). Lorazapam is in the class of benzodiazapine. So, it is a controlled substance. It helps to have a very sympathetic Dr. to prescribe that for you. One who knows we have over-the-top moments with Chiaris.