Scared I'm Getting Worse

[puppylove]

I can barely go anywhere in public now. It did not used to be this bad. I tried to go to Petco last week and it was an epic fail. I got so dizzy I sat on a big bag of dog food on the floor. I thought it was just a bad potsy day so I tried to go cloths shopping today. Again, I had to sit and I didn't even try anything on. I was able to walk around a pumpkin patch orchard place for three hours two days ago... I'm really starting to think one of my main triggers is overstimulation and florescent lights. I'm just scared I'm getting worse because I used to do things and just not enjoy myself because I felt too sick but now I cant even do things indoors.

[micheller]

When I first got sick, before I was diagnosed, I couldn't walk into a store. I remember going to Target once and I had to sit on the floor. I tried going to another store and I was symptomatic as soon as I walked it but sucked it up. By the time I got to the checkout I was pale, sweating, horribly nauseous, on the verge of passing out. I stopped going shopping all together. Fast forward to now, I can go to the store for quick trips. I still get symptomatic but not as bad as I used to. For me, I think it's the lighting. As soon as I'd get out to my car my symptoms started to fade a bit. I was so frustrated I'd cry the whole way home. Someone on here said that some potsies are sensitive to the florescent lights flickering. My compression stockings really help if I'm going to be standing for a while. My neuro said not to use the ones that go to the knee because it can put pressure on a nerve. I know I'm not much help but just wanted to share a somewhat positive story. Keep your hopes up! It's a rough ride.

[MomtoGiuliana]

Even though I am much recovered I can still develop symptoms in large stores/malls, and I avoid them. I don't know if it is the off-gassing from new plastics, the lighting, the enclosed space. I am much better outdoors. I think it is promising that you were able to walk around for 3 hours outside. It's good to know your triggers b/c then you can avoid them or prepare for them. But I know it is scary. I hope it helps you confidence to know that this is a common trigger!

[misstraci]

puppylove, I'm sorry. Sorry that you felt terrible when you went places. I don't have good advice about it but I just wanted to say that I experience that as well. I can be fine (or as fine as we can be you know) and then go into the grocery store and immediately feel like "seizury" head, dizzy, going to pass out, etc. I don't understand it. What does everyone mean about flourescent lights? What do they do that could make you feel symptomatic?

[angelloz]

Same for me and it has been horrible lately. I too can handle the great outdoors much better. It is getting colder here in Kansas so will be stuck more indoors. I am sad also because I cannot shop for Christmas..lucky that I can online shop but it is just not the same. I try to breathe through my mouth in stores to avoid scents...we can't do much about lighting. I am trying to figure out if some stores are worse than others. I wish I had more tips for you.

Angelloz

[lissy]

Sunglasses help, unbusy times of the day, using a scooter if available or one of those walkers with a seat. All stores do the same thing to me even if its a small drug store...and driving I think its the big surrounding with constant movement, something with sensory perception.Some type of anti-anxiety med, sedative even natural calming teas may help?? If ok with your docs.

Goodluck been dealing with this for many years.

[POTLUCK]

Flourescent lights definately bother me. It is difficult to tell how much because standing is worse than sitting and I am usually standing in department stores etc. that have flourescent lights. I leave them off in my kitchen, the only place they are installed and fell worse when they are on.

I believe this is due to Temporal Lobe Epilepsy of Complex Partial Seizures which my EEG diagnoses. I also believe my mito supplements help with this and Dopamine agonists as they decrease reactive oxygen species caused from mito dysfunction. I do have an Electron Transport Chain Complex 3 deficiency diagnosed.

[Sheila1366]

That may explain what happened with me this week. Had to take my youngest daughter to Duke hospital for a dr.' visit. I was already feeling awful thanks to dysautonomia and gastroparesis. But after being in the hospital for over 3 hours, these wonderful flouresent lights everywhere. The next day I am still so tired I can barely do anything, arms were super weak.That was Tuesday and not til today did i actually get to where I can function a bit better.