Kellysavedbygrace

Would suggest some prep before the procedure including IV saline and Anthistamines before as the extra volume would help reduce symptoms and the dental work will likely release extra histamines that could easily be combated w an over the counter remedy. (I have major flares w dental work and this is my game plan) Also, there is an article to give to your dentists on the dinette research tab That might help them better understand POTS. Here's the link to the abstract. http://www.ncbi.nlm.nih.gov/pubmed/16637478?dopt=Abstract

Inspiring. Thx for sharing

I have heard this is a great med but very difficult to get insurance to cover for POTS and is very expensive. Tried to vote but had a weird error. Probably a user issue.

I have used it only a handful of times for plane rides and trips to lab/IV therapy. It does not help my symptoms but calms my nerves and works more like a sedative for me.

I live in FL so this is a big issue for me. My HR will range anywhere between 105-180 when in direct sunlight/ or summer heat so I avoid the sun as much as possible. The way I understand it is that there are two major probs w heat and the POTS Pt. 1. Heat brings blood to surface of skin causing further pooling away from the heart, lungs, brain, vital organs- thus as more pressure for heart to compensate and less flow to brain causing more symptoms. 2. For some of us we also have autonomic dysfunction of our sweat glands. This is why one of the diagnostic tests they recommend at Cleveland Clinic for some Dysautonomia patients is the Thermoregulatory Sweat Test (TST.). I have very irregular sweat patterns. For instance when exercising intensely (indoors in the gym) I will sweat in the small inside of my elbows but my arms will be completely dry. Thus, because our sweat glands are not working normally, our bodies are not cooling as easily as the should. This is why some us cooling vests to compensate. I make sure to over hydrate and drink lots of cold fluids.

Ditto to all above- I even get different visual effects- grey outs, red outs, strobe effects, etc

Yes! Especially in busy, loud, crowded places. I often have to be led by the hand to get through it. A couple of MOS ago I went on vacation w my fam to NYC. I felt, "drunk" the whole time. The memory off it is also a blur- like I was half there.

I've wondered about this too. I have no info on "leaky gut" but I'd definitely say I crave sugar at times and am quite sure the salt I ingest is not absorbed properly bc I eat 6-9 grams a day and my serum sodium levels are normal. Weird.

That is great news and really encouraging. I'm in the midst of jumping through the hoops. Because my husband and I own our own business the paperwork is so complicated. We've been working on it for months. Still not all done. Mostly because I'm sick and don't have energ for the battle. Very encouraging to hear.

The list above is aids to help calm the nervous system down. Might not help prevent something specific like falling when socks are put on but may make overall coping w proprioception issues overall improve. I use the aids almost daily to help calm my system down. Think however I have a pretty severe hypersensitive system. For instance, I'm lying in bed now w earplugs in because the sound of my kids playing in the next room is difficult for me to bear. (this is a pretty bad flare)

I have chronic fatigue and faintness but worst of all is the hypersensitivity to the world around me which makes me feel like a Mac truck has hit me unless I can retreat quickly to a small quiet, dark room.

Here is a list of sensory calming things that I now use myself that I learned from my son's OT when he was being treated for the sensory integration issues. Wondering if any of you also use these aids: - heavy weighted blankets - ear plugs - sunglasses / hat - chewing gum - rocking/ swinging /swimming - brushing skin (with dry brush) - read, watch tv/ or play video game in small space - wear jacket/ sweater/ Use blankets to avoid draft on skin - running hands through/ over different textured surfaces. (ie: rough surface feels good on my hands)

I'm glad to hear others on this topic. I used to drink about a glass a wine per day before onset last year and then stopped cold turkey when I got POtS. It wasn't till the holidays last year that I had a glass of wine again and have slowly added both coffee and wine (in moderation) back. Like Angela I have at least two glasses of water/Gatorade for ever one coffee or wine glass. The wine seems to help with toning down my sympathetic side. I've wondered if I was alone in this.

I've been working w my exercise therapist to move from all recumbent to upright. I get dizzy on upright bike and treadmill but when doing this new running machine (like eliptical but more of a running motion) I don't get dizzy on it. We suspect it causes my muscles to pump the blood faster/higher, therefore I don't get as dizzy. I still don't do it w/o her there just in case. As a side note, I can walk upright fine as long as I'm keeping a good pace. Can only stand still for a second or two before becoming symptomatic.

Yes, when my son was little we were quite concerned that he was autistic. Turns out he just had very severe sensory integration disorder which is part of spectrum. At that time (ages 1-3 yrs) I couldn't touch him w wet hands because he would experience pain and cry. He was bothered by lights, touch, sounds, etc. His case was quite severe. The local news station even came out and did a story on his condition. After diet change and occupational therapy he improved and now only has a mild remnant of sensory issues. He is now 9 and still can't tolerate a really loud crowded place but other than that, you'd never suspect he had anything wrong. I've wondered if others have kids w sensory integration issues. Maybe I'll start a new post about that.

There are several of us that see him. You may want to search his name on this forum for previous posts. He's an amazing doc.

I never thought of it as proprioception- but you may be right. In stores I'm afraid I'll run into other people and/or their shopping carts. In a crowded room I'm afraid I'll run into people and prefer someone to hold my hand or guide me. (usually a family member or friend) At home in my kitchen, when anyone else is in that space. I'm afraid I'll run into them. In the car, whether someone else is driving or I'm driving (I've recently started driving - very limited) I'm afraid we'll run into other cars - especially on narrow roads, tight car spaces or on multi- lane roads, I'm worried about the cars on the side of our car (not oncoming traffic). Ive never run into either cars or people but nonetheless since Dysautonomia onset this concern is crippling. Interestingly, my son had severe sensory integration disorder as a toddler. And now I have it.

Thanks Libby and Batik for that helpful info

Also, I'm curious about your POTS history. Was it a sudden or gradual onset? How old when diagnosed? How long, etc. Thanks for the encouragement.

Oh I should add that other than improvement w the monthly anemia and hypovolemia my POTS symptoms are unchanged.

So glad you asked this question. I was having pretty severe anemia following a really heavy blood flow after each period so my GYN put me on Lo Loestrin FE 4 months ago. It definitely helps with my anemia and hypovolemia but now that I have almost no blood loss I imagine this isn't normal and it can't be good for the body to chemically supress the period. Does anyone know what problems/if any this can cause?

I am encouraged after reading these responses to be more exact and scientific about my fluid and salt intake. And to put more emphasis on the eating, exercise and supplements. My primary doc has just ordered a complete nutritional panel using Spectracell labs (with the caveat that this lab is not well recognized in the medical community.). Funny isnt it? Nonetheless it'll be interesting to see if I have any deficiencies other than the Vit D. Thanks all for your input.

I have had bouts of ear drum spasms along w my pretty severe tinnitus. (Have had continuous ear ringing bilaterally since las Sept. It started w one high pitch and is now 3 different pitches, both ears. On occasion, when really symptomatic I hear a fourth really low pitch.) During my last big flare following dental work I started having pretty bad ear pain along with the ear drum spasms. They sound like a drum in your ear. (might google ear drum spasm and see if it fits you.). These ear drum spasms can be w or w/o pain. When I've had paint has been migrainous in nature. The only thing that helped me get the spasms to calm down was complete rest (about 2 weeks) and lots of IV fluids.

I started on this at 60mg 1x per day in March. My Neuro titrated me up slowly. Now I am at 3x per day. One of the few drugs I'm on that I can tolerate w/o side effects.

None. All my issues are Dysautonomia related. I do suspect Mast Cell Syndrome but has not be Dx yet. I have lots of other diagnoses but all related. (fibro, sleep apnea, migraines, tinnitus, etc.)