Potential Overstimulation explanation

[p8d]

Awhile back I asked about the feeling of overstimulation/overwhelming when moving, either in vehicles or when the tv pans/zooms.  I said I would provide the info I received. I asked both the POTS neurologists I see about what might cause this and if there is any treatment.  My original question was is it ANS or CNS.  One neuro said it was impossible to distinguish which and the other said this is usually from non-headache migraines.  For the migraines I was given the choice of increasing my beta blocker or trying  topiramate as preventatives.  I’m trying the beta blocker because my HR also is a bit elevated.  I’m having less trouble with the tv panning but I have had a couple of colds that have had me stuck in the house and now it’s been too cold to try a ride in a vehicle but I hope to try it this weekend.  I’ll keep you posted.  Has anyone tried either a beta blocker or topiramate for this or inadvertently found it helps?

[Guest KiminOrlando]

I just posted about topirimate on another thread. I think right below you. 

I was like this for a while, but for me it seemed to be tied to fatigue. I was also on gabapentin which added to the brain fog for me. I was able to drastically reduce my dosage and it helped. I still get overwhelmed in loud places, places with flashing lights or places where people are packed in shoulder to shoulder. Places where small children run and scream are difficult for me. Chuck E Cheese is my worst nightmare. 

[p8d]

I hadn’t thought about fatigue being a factor.  Thanks, I’ll monitor that.  I’m housebound because of everything but moving vehicles is really difficult.  Fatigue is one of my worst problems.  Chuck E Cheese is beyond my imagination!

[DizzyGirls]

I will third Chuck E Cheese!!  My worst nightmare also!!!!  My daughter was on topiramate a while back to see if it would help her migraines, which are vertiginous migraines.  It did nothing for the migraines or the vertigo.  She is severely bothered by overstimulation, which makes all of her symptoms worse.  When her vertigo first started, it was linked to her migraines and not to overstimulation.  Now, I would say it has a lot to do with overstimulation.  Her pain doc is trying to get her off her benzo, too.  It's really the only thing that controls the vertigo and overstimulation.  Her beta blocker has done nothing for the overstimulation, but does work well for her tachycardia.  She takes propranolol. 

Thank you for doing this research!  I always feel like we need to keep researching dysautonomia as WE as patients seem to be the only ones who understand it. 

I'll throw something else in the mix, if you don't mind.  But, do you have any trouble with the switch from sympathetic to parasympathetic at night when you are trying to settle down?  It's odd.  My daughter had a huge spinal fusion surgery at the end of July.   Her neurosurgeon had said for a normal person, it would take about 6 months to recover from something of this magnitude, but someone with Ehlers Danlos and Dysautonomia, it would take anywhere from 12-18 months.  This brings me to our situation.  When my daughter heads to her bedroom at night, as soon as we dim the lights and try to calm things, a huge wave of nerve pain overtakes her body causing horrible muscle spasms, sometimes tremors, too.  I think it is the shift from sympathetic to parasympathetic.  Sometimes it only lasts 15 minutes, sometimes 30 minutes to an hour.  Ever experience anything like this?

[p8d]

DizzyGirls,  no, I haven’t experienced that but shortly after I was diagnosed I developed severe neuropathy in my diaphragm area after eating.  I didn’t recognize it as pain when asked by my gastroenterologist.  I said no, no pain but after I ate I would routinely say I felt like I had eaten razor blades.  After getting down to 84#, being hospitalized, having an endoscopy and on being TPN for 6 weeks gabapentin was like a miracle.  Of course the dose was too high which we didn’t figure out for a few months but I still take a lower dose.  I also take bystolic at and remeron at bedtime and methyldopa for norepinephrine surges earlier in the day.  My norepi surges daily in the afternoon.  The remeron finally got me sleeping after 18 months of a few hours at best.  Don’t know if this helps any though.

[ebonie]

Hi p8d, I don't have any answers to your main question, but I can share my experience around the overstimulation from moving vehicle of tv zoom/pan. (My biggest bugbear are internet sites that have a moving banner at the top with advertisements/announcements. I feel sooo dizzy!!)

Have you heard of SPD (sensory processing disorder)? It's where the body gets overstimulated or understimulated by sensory (senses) input. There are 8 senses (the regular 5 of sight, sound, taste, touch and smell, as well as 3 additional ones that aren't so common -- proprioception, interospection, vestibular system). The situation you're talking about sounds like vestibular -- the sense of balance -- and proprioception -- your body's understanding of where it is in space. For me when these systems are out of whack, I tend to get agitated by movement (like the internet moving banner, or tv pans, or a loud noise that my body is trying to locate). I also float outside my body sometimes -- don't feel like I'm in my body, but big like a Michellin man.

A few things have helped me. (1) The awareness -- I'm not crazy or making it up, it's just my wacky biochemistry. (2) Having an appointment with an occupational therapist who specialises in sensory processing disorders for adults (although they're not super common, and I go to a pediatrician one and she's been awesome). (3) reading blogposts like https://www.rachel-schneider.com/about-spd and (4) the best solution I've found for my body is weight and/or compression -- wearing compression singlets, or using a weighted blanket or a weighted vest. While it doesn't work for everyone who has an SPD, that weightedness helps me (and many others) to calm our sensory system so we don't get overwhelmed by sensory input. I've even had a friend stand behind me and put her hands on my shoulders and push down. I've also been known to put a 5kg bag of rice on my head when I feel really dizzy. Really helped me.

In my experience, I've found that mainstream doctors don't know a lot about SPD, but it's becoming more mainstream. When you find one that gets it, you know they're worth their salt (pardon the dysautonomia pun). 

 

 

 

[p8d]

ebonie, yes, I have heard of SPD.  I only found one OT in my general area that deals with it but it’s a 45 minute commute across the busy metro area which would make me seriously ill.  She also doesn’t take insurance so...  I will give the weighted or compression vests a shot.  I already wear compression stockings so why not more!  Thanks for the tip.  I love the image of someone with a 5kg bag of rice on their head!  Whatever works!

[ebonie]

Happy experimenting, p8d! Glad the 5kg bag of rice entertained you -- I forget how weird it is until someone reminds me

[yogini]

Dysautonomia causes all kinds of strange symptoms.  It is hard to find mediations to read these individual symptoms but if you find treatments the dysautonomia itself, the symptoms often improve.  WhenI first got sick I kept track of my HR and BP and when my worst/strange symptoms occurred, it often matched up with my HR and BP being off.

[WinterSown]

Sensory overload completely overwhelms me, it can start right away or kick in a half day later but I will be forced to lay down most of the day. Hubs is about to come back from an appointment and he's going to call me when he's on his way. That's my signal to get ready because we are going to the supermarket after he gets home. I am going to take 2mg of valium which is my vertigo medicine, a cup of coffee to pre-empt the migraine (it does sometimes work), and I will put on my headphones. I will take my sunglasses in my purse and if need be put them on in the store. This is a planned trip. I google store locations and it brings up a side panel of the store information including its busiest traffic hours, it's not going to be too busy; I'll wait about five minutes at Stew Leonard's to check-out which is very doable.

 

 

 

[GardenGal]

Well, not a lot of input, but certainly commiseration and my own trial and error! Thanks for confirming that I am not crazy :-)! The buzzing, panic feeling when I can't handle any more sensory input is frankly terrifying... And for me, If I ignore it, it leads to inability to control muscles, and muscle spasm on the right side of my body and weakness in the muscles of the L side of my face and neck. There have been some times that this has lead to months of trouble swallowing and limping, etc. (like a stroke almost???). All that to say, when I start to feel the overwhelmed and inability to manage sensory input, I take it seriously. When I start to feel it, I retreat to a silent dark room, usually in bed curled up with my kindle. I've started to do this a to quicker than I used to. For me, 'toughing it out' just doesn't work... it gets worse,and then physically effects my body in the long run (weather or not my neurologist etc. understand this)...

I have noted that since I've realised some food sensitivities and eliminated these things, I've had drastic improvement. For me, eggs are my biggest trigger. I had IgE and IgG testing done - I think these are a lot more likely to precipitate neurological responses (often days after even), than classic IgA allergies (like what causes rash, hives, etc). I also had a nutrition response therapist do muscle testing,  both the blood testing and the response therapist identified the eggs, and I thought... well sounds a bit wacky, but it's worth a try, so I've done, well like 5 trials. And it's quite drastic actually. 

I also find that when I don't take my desmopressin and am flushing fluids and nutrients the sensory overload is worse, and that when I do my IV saline, it improves... Don't know if that's just general improvement that causes a cascade effect, or if there's something more direct, it's just my experience.

How was the grocery store? Hope you were able to enjoy getting out. 

PS: What kind of earphones do you use? Been thinking of getting some, but haven't tried any. 

 

[WinterSown]

HI GG, the store was fine, it went okay. Planning is everything. As I get used to the store it's much faster to go through it all, it used to be a Pathmark there and it's now a completely different layout inside. We were able to get around fast, there was no line at the fish counter or the deli and we went right up to a register to check out. I wear Skullcandy Uproar Wireless headphones, they have an adjustable band but more important, the earphones are very well padded and do a great job of blocking out a lot of sound. I got them at BestBuy. 

 

[GardenGal]

OK, thanks for the recommendation. I find myself snapping at my kids, etc when they are making a little bit of noise (normal kids stuff) when I'm feeling overwhelmed, and we all may be more peaceful if I got some.