WinterSown

Bacon and an egg on a piece of white toast--I ate it like an open face sandwich and the egg yolk ran down my chin. Drank it down with more kefir. I hate POTS but I have to admit liking the extra salt part.

Yum, needs a cold brew too.

Education over Adversity.

Ramen, fritos and kefir.

I've had anorectal manometry twice. First time they didn't know I had POTS. This time around I was given a prescription for Pelvic Floor PT. I've got a session at 1130am today, I go twice a week. It has been a tremendous aid. Not only do I have better control and stronger muscles, the exercises have given me a new me. I don't know whose body this is, I'm getting toned!

I am so sorry you are experiencing this, it is very, very uncomfortable. I seen my proctologist more often than my cardiologist or neurologist. They can assess your motility and make suggestions to change your diet, prescribe meds or OTCs, and give you a maintenance plan. If possible, try to make your appointment with a doctor soon, you haven't gone in a week and that's not healthy for you. In the meantime, you could take a soak in a tub with some epsom salts. The magnesium soak may be stimulative and your skin is nice for it too. A warm heating pad or hot water bottle for your abdomen may be soothing, I hope you feel better soon.

I just added Dr Michael D'Anca to the list so he is 'pending'.

That's good to know. Sweet drinks are not my fave. Thank you.

Good idea. I told him Winthrop should create a Dysautonomia Clinic. He siad I would have to bring that up with the 'third floor'. I suppose that's their business office.

I take 2mg valium, 1 - 2 pills up to three times a day as needed, I have vertigo. These don't bother me with a drying effect, my doctor prescribed it to me knowing that I already have problems, I had a fissure, so he didn't want that to happen again. Do ask about the valium, I take the generic diazepam and get a 90 pill bottle once a month which gets me through fine. The script is dirt cheap too--I think my copay is about four bucks. It works for nausea, the spins or fuzzhead that I get with vertigo, and it also takes the edge off of stress which is a big trigger for me. I hope you feel better soon. T

Welcome Amy, the posters here are very nice, you will feel comfortable. I am sorry you were diagnosed with a dysautonomia, but on the other hand, you are pretty fast to get a diagnosis after recently become symptomatic with fatigue--that's good sign, you have a savvy doctor and that's going be very helpful in your learning to manage your symptoms. Not all doctors can make the diagnosis that fast even if they know about dysautonomias, most don't. I have been on an assortment of cardiac drugs that get adjusted every few months. Giving your doctor feedback on how you are feeling is vital to them finding the right drug or drug combo and creating a maintenance plan for you. Keep a diary or note on a calendar the problems you are having on any one day and bring that with you to the next doctor visit.

He went to school first to study nursing, then switched to doctoring. The foundation of his medical education is caring. He's a perfect ten for any of us.

I just got back from my appointment with my doctor at Winthrop Cardio Vascular in Garden City, NY. He's a completely understanding, kind, listening, uplifting fellow. He let me talk, and he let me talk, and he let me talk some more and we even talked about patient advocacy--what joy! OMG, after so long to get a diagnosis it's nice to know someone so compassionate is caring for me. His partner diagnosed me earlier this year after I did not faint with the TTT, but his partner also had listened and asked the right questions. Win. We made some tweaks to my maintenance: more magnesium via soaks and vitamins, I'm to drink kefir with each meal and eat at least five meals a day(!) to help with my lightheadedness and digestive tract issues; and he suggested a treatment he just heard about (he says no guarantees yet how it will help) but I can make a paste with water and epsom salts and use it like a face and neck scrub. He said it will be good for my skin too. WCV also changed my neuro appointment. I'm going in two weeks instead of six as I am tripping again but we'll get that managed. This is the first time in a long time I came back from one of my specialists feeling very happy for the visit.. Usually I am bummed, not this time. Joy.

I saw my cardioloigist today and he poked at it a lot. I have been ordered to sit in my lounge chair with my feet up, watch the tube and put warm compresses on it to bring down the hematoma, Epsom salt soaks anytime and I am also to take a break and DO NOTHING for a while, I still am to exercise but no stressy things.

A technician laughed at you? I would report it to human resources. That's outrageous. Dysautonomics are treated abysmally, I really would send a strongly worded letter to his employer AND your county medical supervisory board. This person needs retraining and should not be around patients until its completed.

Dizzy, Is it like those MIO energy drops? Hubs gets them to add to hist water bottles for a pick-me-up at work. I tried them and meh, kinda like bug juice and I don't notice the 'rush'.

What are straight caffeine bottles? What is this product, brand?

I tripped and whacked my shin bad about ten days ago, today it still is mostly visible with now a streak of blood going down my leg to the top of my foot. They iced it at PT. I've also been doing exercises on my balance board and after a few minutes my feet are purple. I'm seeing the cardiologist tomorrow and will bring it up. Does anyone else have problems with bruises healing slowly? What can I expect? This is new to me.

This is a syndrome where everyone is unique in their symptoms and how they react to various drugs, therapies and coping mechanisms. Whatever brings you relief is gonna do it for you, some people may or may not like what you do but they are not you. So, smoke 'em if you got 'em. I just turned on the keurig.

I have POTS and vertigo. I haven't fainted in a while but can't escape presyncope several times a day. I have not yet found a pattern as to why I am suddenly symptomatic though before the Vestibular PT, side to side movements as when you are shuffling back and forth at the kitchen counter when you are making dinner, or standing and turning to the right like when you get up from your desk chair, nailed me everytime. Now, I have to go lie down if I exercise too much while standing. I can do exercises on my back on my bed no problem but I have to limit my time on the balance board, I've recently noticed that using it too long makes my feet turn purple so that accounts for those feelings. I have to go to BJs really bad, we are out of everything. If you search a particular store on google they will show up in a sidebar with store information. Look for a graph at the bottom of the box that shows the stores peak business hours. I try to set up my shopping time for their least busiest times. This gets me through a lot faster. T

I am hugely worried about deconditioning and so I exercise frequently. I currently do pelvic floor hyper-core twice a week at PT and I do my at-home exercises practically everyday, and I walk everyday. Last year I did Vestibular PT at the same center. Initially, I was wiped out--I would go home and crash on the bed and sleep four or five hours. I think on PT days (daze) we had takeout almost every night for dinner and we also had a service come and help with the housecleaning too. It was exhausting. However, each week I got a little stronger from the endurance training and I can do a little bit more work. I have learned to double quick-to-prepare recipes and put a tray in the freezer, this way we have less take-out which is expensive and usually not as healthy as home-cooked. I do take a nap after dinner and now walk the dogs late, close to midnight, when I am back awake and up. Splitting the exercise by doing some during the daytime, like my balance board and gel rings, and then doing the evening walks much later in the day have helped me get over the exhaustion. I do still need a nap in the middle of it all but it's less than an hour., I no longer feel completely drained like I did last year. I can do a little more activity and feel a little less exhausted. It does get better, you will get stronger and your activity hours increase but it doesn't happen overnight. I wish you well. T

It's a daily choice for me when my different specialists give different opinions. The colorectal surgeon doesn't want me to touch a drop, the cardiologist has no problem as long as I limit my intake, and Cushings/Chiari Institute has a help-yourself Keurig Counter because coffee makes everything better

Buckling legs is one of the things that led me to being diagnosed. It wasn't so much that I had weak knees but more that I would suddenly lose the capacity to hold my body erect, like something had suddenly drained every molecule of energy from me. I would consider taking your daughter to a neurologist and ask for a prescription for physical therapy as she needs to strengthen her entire body to help keep herself erect. PT has helped me a lot, I have been able to hold on, to endure, so maybe it might be helpful to your daughter. I hope your daughter will feel better soon. T

I have vertigo which I control with low-dose diazepam as needed. If I take a valium, I just want to go lay down. If I drink a cup of coffee I feel awake but still foggy. But if I take a pill with the coffee, instead of the two cancelling each other out, the brain fog vanishes faster and stays away longer. A few of my doctors are laying a minor, unhappy-face guilt trip on me for the coffee (probably rightly so) but coffee works. Is there anything with less caffeine I can substitute for the coffee that will boost the valium in the same way?