WinterSown

It's definitely overload. Vibrations are one of my biggest triggers. If you have a doctor tell you that sensory doesn't include feeling vibrations then get a different doctor. 

Has anyone talked to you yet about Sensory Processing Disorder?

14 hours ago, StayAtHomeMom said:

Normal people can have problems with certain scents. I wonder if it is smelling is triggering the malfunction, or the malfunction makes us more sensitive. Does that make sense?

Yes, very. Scents are triggers for allergies and your body reacts. Scent can trigger memories as well,  it can cause you to recall a moment in your past. Sometimes that can be stressful and stress is a trigger. I do believe that our senses are effected by dysautonomia. I also think that like anything else our reactions are sensationally unique to ourselves. There's no one-size-fits-all fix for it. Though Valium does seem to take the edge off.  Pleh.

3 hours ago, StayAtHomeMom said:

That is kind of interesting. I know I have sound issues, but can't say smell has bothered me. It would suck if it did. My husband likes to cook Cajun and the smells are amazing, even if I can't eat it

I am not scent very sensitive though I bought a sale candle last week that gave me a whopping headache like from an overdose of cheap perfume. Probably anyone would have gotten headaches from it, I bought a dollar store candle and I paid for it, ugh. All our senses are triggers to alert our nervous system so if any of them are kablooey I'm going to blame dysautonomia until I have proof otherwise. They can all go weird at any level anytime. 

It sounds like a type of sensory overload. I am wondering if some type of low-dose muscle relaxant might help tone down your symptoms. I am very prone to overload, I've learned to take half a diazepam (just 1 mg of valium) before I leave the house for someplace that is busy or noisy. It's made a big difference in my being able to function without setting off many of my symptoms. 

I hope you feel better soon.

14 minutes ago, yogini said:

In my opinion broth is the most effective drink is broth followed by lots of water.

Broth can also be nourishing and comforting. Chicken soup to the rescue.

I drink water and try to get my nutrients from the other foods I eat and drink.  I usually add a wedge of citrus to spike it for flavor. I also mix soda or nectars 50/50 with water.

have you had any relief from over the counter products?

25 minutes ago, MeganMN said:

Well, I reached out to my GP and she recommended that I call the Cardiology office here at the hospital where I work.  I called them and they do not want to see me because they do not want to step on the Electrophysiologists toes.  Nice.  So I got nothin'....  The EP said he is not concerned about the dizziness and take some Florinef and see him in March.  Seriously.......sigh.  and this is why I do not even want to bother.

That's bizarre, they should be coordinating with your EP instead of telling you they don't want to interfere in his fiefdom! If you can, should you go looking for new doctors, try to find a set that all work for the same group. My Cardiologist, EP and Neuro all work together for the same hospital group and they all can access or amend my records. They function as a team for me--this is what you need. You need doctors that will work with each other to get you better. I would drop into the cardiology  office at the hospital and schedule an appointment in person. Don't let strangers make decisions for you. You want an appointment there so get one. Ask in person because it will add to your seriousness.

Yep, that can be from blood pooling. I also get dark circles when I am dehydrated and exhausted. I drink some water and lay down, sometimes I fall asleep. Laying down helps a lot and I rest, when I get back up I look better, feel  better and don't look so pale and dragged out. try to get some more water and some more rest, it may help.

I threw up the prep on my first colonoscopy--I can't drink a gallon of fluid 😞 Second time around he switched me to Prepopik and had no problems at all. 

2 hours ago, ScottS said:

FDNY? Fire Department of New York? Fairway? I had to do an internet search for that one. A chain of grocery stores. I live in high Rocky Mountain Utah. The local stores are Smiths and Fresh Market. Oh and, of course, Trader Joes. The best local coffee shop (in Salt Lake City) is called "The Rose". They sell "Sweet Bloom" coffee from a Colorado based roaster. Nice coffee. Their decaf is one of the better ones I've tasted (and goes well with a wide variety of regular/caffeinated ).

Fairway in Garden City. We have a few Fresh Markets here and TJs too. 

The new car has OnStar, I refuse to wear a granny beeper.

10 hours ago, bunny said:

Hitting your head due to fainting or fainting while operating heavy machinery are the only dangers that I've ever heard of.  When you're home, especially alone, don't try to make it to anywhere -- get on the floor wherever you are until your body stabilizes. 

I've been fainting for ~25 or so years.  At the worst, multiple times a day.  Other times I can have weeks go by between faints. I'm still embarrassed to admit it, but I do wear a medical helmet when I'm not doing well or times/activities when I'm more likely to faint.  I'm still embarrassed by it, but it has worked wonderfully -- I had my first concussion last year and it wasn't due to fainting.  I was feeling fine so I didn't have my helmet on and whacked my head on a steel beam hard while carrying boxes.  Go figure. 

As @Pistol said, learning what leads up to a faint and recognizing the signs of it can help you prevent it from happening.   Be aware of your body and be prepared to sit when necessary.  Also look up some of the tips given for those with epilepsy.  Not all of it applies to us, but things like grab rails in bathrooms can make life easier and safer. 

I was driving my car and fainted while pulling up to a stop light. I drove into the bus offloading passengers. No one got hurt, so thankful!, but the passenger side of my van was creamed. The bus driver rubbed my paint off the bus with his elbow. I hit a bus--fainting is dangerous to the public too.

The danger part comes in with hitting your head or something. Yes. I get Drop Attacks which is fainting but you remain conscious, I still can collapse if I am standing still or trip when I'm walking but I am always aware. I've had some hematoma the size of golf balls. One of my cardiologist always looks at my shins--my hematomas and tripping worries him. The tripping became part of everything that went into my dysautonomia diagnosis. Last spring I collapsed twice a week apart the same way  with grabbing the table for support on the way down but it wasn't enough so I chicken-winged myself and my shoulder still is not right. It will now dislocate at anytime on its own but it goes back in quick if I manipulate it just right. 😞 I sleep on a heating pad which helps. 

I go to PT twice a week for core and balance and it has been tremendously helpful, I have better ability to hold my body up and my legs are stronger. I just started Mestinon a few weeks ago and it has given me a lot more energy--I'm so much  less likely to collapse or trip now. Please do share your concerns about fainting and injury with your doctors. It may be as simple as one of your drugs is too strong at this time and they can scale it back and/or they recommend exercise or PT. Take the PT script if you can because the DPT will test your abilities and create a program tailored to your capacities and will wisely and slowly increase your strength and balance. Renew the script as often as you can to keep you on track to improvement. You don't want to smash your face and chip your teeth or break your bones. You want to walk and stand with confidence. Fainting is dangerous and should be taken very seriously by you and your doctors. 

You can still make a bubble with cold water, sigh. I also don't have a dishwasher. We eat off of paper plates and use plastic ware often. 

The surgery will help, you will feel better afterwards.. I've been knocked out on the table three times since getting dysautonomia. I've had surgery to close a fissure and have had two colonoscopies. I've never had a problem. 

2 hours ago, ScottS said:

This line would not be out of place in (the gentler parts of ) E. Annie Proulx's wonderful (and, once upon a time, Pulitzer Prize winning) "The Shipping News".

“They say that doing ten sums a day prevents you from becoming senile. But by that argument bankers should be geniuses. That's not right. Thickest heads in the world.” 
― Annie Proulx, The Shipping News

I watched that movie last year, very moody. My mom would say things like that, she was so down to earth and very practical. And she was a wiz with leftovers and could turn anything into a casserole--and they were all good. 

1 hour ago, Pistol said:

So - when will you open The Dysautonomia Restaurant? I will be there - well, if I have a good week. ( I guess a dysautonomia restaurant will not take reservations? ) 

Thank you LOL. If it's not easy I won't make it. I've very much enjoyed my new hobby of collecting old cookbooks, going through them and finding wonderful things to try. Today I made Arepas with masarepa blanco--white precooked cornmeal. OMG, so good AND so easy too. One batch made eight and half of them are going into the freezer. 

I do think it would be good for our community if we shared more of our fast and healthy ideas. Take-out is too expensive and too fatty. I'd rather make up something fast and quick and fresh for myself--the problem is that Hubs does not always want the same for dinner. Sigh. Tonight we share a bento box.

If you can find it, Fairway has a brew called 'Life Begins After 40' which is supposedly the brew used by the FDNY. I've bought it by the bag many times when it's available but it sells out fast.

3 hours ago, potsiebarbie said:

I generally just do a little milk or half n half in mine. Sometimes I need a change, but eventually just back to a splash of milk. Lol

I don't like the flavored creamers. I want plain jane joe with plain jane moo juice.
 

A cup a cup a cup.

You can PM each other through the DINET messaging system.

I made a free-form Chicken Parm Tart. This was so much better than take-out and took only six or seven minutes of prep. I used a store pie crust. I tried to keep the filling a couple of inches from the edge. I topped the crust first with a couple of handfuls of shredded mozza, then topped that with some leftover chicken parm that I chopped up, added some more mozza and some parmesan, then a handful of halved cherry tomatoes that I squeezed the seeds and juice out of. The edge of the piecrust I wet with a little water and then folded it up to make the brim, crimping a bit as I folded it towards the center. Baked it at 375 for about 25 minutes until it looked brown and was bubbly. I am happy with this. It cut so nice too. I could do a thousand variations with this based on what-have-yous in the fridge. Leftovers get fancy when you put them in a crust; eh, some old home-ec story :-)

I have a paraesophageal hernia, four inches of my stomach are above the diaphragm. Pain feels like an oncoming heart attack.  I usually need to burp. I take omeprazole and now also bentyl. Chiropractic won't do for a PEH. It's my choice when to have the surgery. For now It's not bothering much so no need. 

6 hours ago, ScottS said:

Thank you for the Huffington Post link. Fortunately for me I can (and do) eat (and often crave) pretty much everything on the list. The exceptions? Tofu and kale - ugh and double ugh.

An aside, I LOL at your description of snacking on sugared pecans. You slurp them? 

I like tofu, I sear slices in a pan with some seasoning--simple and easily digested meal for me. No I do not slurp sugared pecan--but they will make you drool. Slurpy slurpy. And I think kale tastes like burning tires, one level up from brussel sprouts.

12 hours ago, ScottS said:

I just thought it interesting that our skin has "functional magnesium transporters". Who knew? (I didn't.)

Osmosis is the key. You have to have all the right components to keep cells fed, watered and oxygenated. That's why it is especially important for dysautonomics to eat a balanced diet. My cardiologist took me off of all supplements and told me to instead get everything from the foods I eat and drink.  This morning for breakfast I had an english with peanut butter and banana chunks. Yummy. And good for me. There's also an apple cut in half on the counter for me to nibble on throughout that day, and a nice veggie soup I made from whatnots in the veggie drawer in the fridge. Yesterday i was snacking on sugared pecans--ate the whole bag too, slurp. 

https://www.huffingtonpost.com.au/2017/07/10/what-foods-contain-magnesium_a_23024245/

You certainly, I think, need to call your doctor's office and discuss the symptoms you are feeling. Dysautonomia can effect so much. It's possible that the symptoms you are describing may not be from the drug. I have problems with swallowing and no appetite, I have problems with lubrication--not enough or too much spit and mucous. And the freaking vertigo too. I had all of this before the Mestinon. I think you may have other symtpoms from the dysautonomia that still have to be addressed. That's why it is important for you to call in to your doctors office and describe what your feeling. It may not be the medicine. 

I've been taking mestinon for almost a month and it's a miracle drug for me. I have more energy during the day, I don't have to nap as much. I have more desire to do things. I organized my kitchen cabinets yesterday. I had the energy to do it and my legs didn't hurt so bad that I could stand long enough on the folding step stool to do the job. Joy. Little things mean a lot. I also have way less problems in the bathroom whereas I was using glycerin five or six times a day I have only used it twice in the last month. Miracle!!!