WinterSown

How we all tackle adversity is very different. Right (write?) now on my kitchen counter is a chart where I'm drawing an uphill battle line showing the increasing difficulties in getting a post-menopausal diagnosis and appropriate age-related care--it's letting me address my frustrations. I chose to learn and understand in effort to find balance in my body and my soul. Dysautonomic care for everyone is a dual track--we try to reduce the symptoms, and we also try to limit their effect on our lives. Learning how to slowly and incrementally adapt to make your life better is vital; it involves flexibility in your habits and attitude. I am strongly behind everyone picking up a pen, a marker, a paintbrush, a musical instrument, pounding the keyboard in public forums or their own b'vlogs, writing books, anthologies, poems, haiku, limericks--or whatever other media that allows you to tell your story. Who we are and how we tell our story is part of how we live--you don't get to have dysautonomia in peaceful secret because the symptoms can't be ignored by others who see our eyes glaze over as we crumple or lay down for a nap that lasts five hours instead of five minutes. Describing, showing and telling your view of the world can be healing to a wounded spirit.

When I go lay down I feel like my blood is sloshing back and forth in my body--equalizing after blood pooling. I especially do not like the sense of waves of blood gushing past my temples and into my head with a force that seems like my face will blow off my skull.

The doctor said I needed more sodium :-)

@Pistol Thank you for being so caring, everyone too. I was stable for a long while so we did talk about probable cause and right now we can't think of anything out of the ordinary a few weeks back--nothing rings a bell. We're going to take a week next month for a small vacation--the EP thought it was a good idea to get away. I need a brain break. One of my other doctors gave me good advice a long time ago, I think it was Dr Howzyerbutt. He said you can do everything 100% right, even 110% right and things can still go wrong. I'm not ripping my hair out about cause, instead I'm going to concentrate on reducing the flare's effect on my life. This afternoon I made cheesecake! I'm waiting for it to cool so I can glob a slice down with a mug of coffee--comfort food tonight, and I have a bag of Swizzlers too. I've been playing with my new Omron--a new broom is supposed to sweep clean--I'm not getting any better numbers, harummmph!

@Clb75 My cardiologist, EP and neuro are all part of the same cardio-vascular unit and have equal access to my electronic records, as well as get alerts when they are changed. The neuro probably read my chart before I got home. The EP doesn't think it's related to the radiculopathy which is part of my program at PT. I do have more range of motion and less neck pain but no relief from the dysautonomia symptoms. All my doctors are on the same page to reduce my symptoms and their effect on my life--that's pretty much my management plan. I go back to him in a month, and I see the neuro a few weeks after that but he reassured me to call if I need and he will see me ASAP. That's probably the best takeaway--that they will be there for me when I need them. If only there was a pocket-size cardiologist I could take with me all day long....

I just got back from the EP. My numbers are still wonky and I'm still going numb even though we've cut many drugs and I've made an effort to stay salty and hydrated. We had a good laugh with my cuff which he tested on both my arms--we had trouble getting a reading, finding anywhere we could get a measurement. I told the doctor to try it on himself and immediately he got a read, as did my husband who was also there. Put the cuff back on me and it's a struggle for all of us to find a position to get a read. Sigh. I bought a new one on the way home. I am having a mega-flare. We couldn't' think of anything that recently happened that would trigger an uptick in level and frequency of symptoms. No changes in any drugs or management today but he did mention IVIG, but right after that he said he thinks it's dubious and questionable as to its results. I will see him again in another month and hopefully my symptoms will have rattled down.

I take 2mg diazapam/valium as needed, I start by taking half a pill which is usually enough to take off the edge of whatever is trashing me at the moment. It's a very cheap drug too so if you are going to switch your relaxants valium is very affordable.

My doctors focus on reducing my symptoms and their effect on my life. Nutrition, medicine, exercise, and hydration will provide physical benefits; your reactions to them may vary because sometimes you find the magic formula right away but more often it will be trial and error while you learn to reduce your symptoms. How your symptoms effect your life is a parallel track in your care. Somethings you may have to give up but there is a world of experiences new and waiting for you to embrace. As an example, we can't go to busy museums or public events because sensory overload is a huge mega-trigger for me. But that didn't mean giving up going to museums or shows or getting out for a day--we just do it differently. Now we visit other museums and walk at rural parks or visit smaller local events. One of my most favorite tools is Roadside America which brings up local attractions with their maps--they are all delightfully wonderful, some oddly quirky too (fun!), but a lot less busy than the bigger museums or other venues. Your children may also benefit from the slower venues--less crowds and usually no waiting time at the bathroom is great for everyone. Another boon is that the slower venues are usually free to moderately priced. $uper for home or vacation.

You can tell your friends to knock off their attacks on you by saying it's anxiety, it doesn't help. Dysautonomia is a syndrome of swinging symptoms, you may not always experience your symptoms--or--they might flare and you have the worse day of your life. Anyway it happens, it is in your body and you are a unique person. Everyone of us experiences our symptoms in ways that are unique to ourselves. I think it's awesome that you have some respite in the evenings--you're less on your feet, there's less sensory overload and sounds, you're able to have a simpler time of it than outside for the day at work or doing chores. Enjoy the times you are feeling better and don't let anyone add to your anxiety by making you think you should be ill all the time and that if you are not you are faking. I feel better very late at night, so much less sensory overload, I walk my dogs, do some chores, catch up on reading or youtube vids, whatevs. I love the late nights now. Concentrate on finding ways to increase the duration of time you are feeling better--with some trial and error you will learn what and when you can do more.

I talked about this with my EP last week. The pressure drops are so rapid that by the time you've got a reading it's over--you are getting the recovery numbers and not the event numbers. My EP believes this happens, it's quite real and the sensations they produce are quite uncomfortable. He's been tweaking down my meds and now I am on just one BP drug in low doses but I suspect when that one is cut these drops are still going to occur.

It worked in two out of three healthy young men. I hope they can expand upon their work to include a larger pool of subjects of more than just three men, especially to include women of child bearing-age and older. For now, nothing wrong with a good breakfast to start the day.

Depending upon my doctors I have mixed reactions from them about drinking coffee. The colorectal surgeon thinks it is evil and wants me to never drink a drop. The cardiologist is fine with me having two twelve ouncers in a day. The brain institute that did my memory testing has a glorious all you can drink keurig bar in their waiting room. For me, coffee is my go to stimulant. I have next to no energy and my numbers frequently drop into 70s/40s. The supermarkets here all have gourmet beans so I've been enjoying the world of caffeine. Right now I'm drinking Costa Rican, after the rains. If it makes you feel better do it, but don't be foolish and go overboard with a quart of espresso. Find a brew that works for you and drink an eight ouncer as needed. If it makes you feel hyper drink less and/or find a weaker brew.

I had a VEMP test last year for daily vertigo. The test is like a sonogram that maps the structure of your ear canals--it looks for imperfections that can cause dizziness and imbalance, and also cause you to be light-headed. Vertigo isn't just the spins or a sense of motion, it also includes brain-fog and a sense of dissociation. My ears are fine and my hearing is great so they're pinning the symptoms down to dysautonomia--however they still must be treated and I work on balance at PT. I take low-dose valium to control the symptoms when I need them, it's a muscle relaxant and helps to tone it all down quick. If you have Bonine in your bathroom cabinet you might give that a try, it can be very helpful in alleviating the symptoms, especially the wooziness. I hope you feel better soon.

There are many dysautonomics here, not all of us have POTS. There are multiple forms of dysautonomia. Mild calcification can be an early sign of heart disease and not related to dysautonomia. It could be related to your diet and activity and/or genetic. Talk to your doctor about your family history and your lifestyle to set up a long term care plan to keep your heart healthy. A good diet and active life can be an easy way to keep you at your best. Good luck to you, mild calcification is not a serious problem unless you ignore it for decades.

The neuro tested me last year for the neuropathy. One of the tests was a doppler of my neck which found I have radiculopathy. I was prescribed PT and it has helped a lot with range of movement and pain reduction caused by pinched nerves but it has not done thing one for the dysautonomia symptoms. Along with the numbness I also get weird paresthesia sensations just outside my body--sometimes like that stinging effervescence when you pour out a cold can of soda over ice. I've been reminded I can take my low dose 2mg valium when it's driving me nuts--it is a muscle relaxant and at 2mg doesn't knock me out immediately, sometimes I bite the pill in half and just that amount has helped to tone it down. I hope you can get your tingling figured out--it is very annoying. Be well. *** Update: Cutting the Carvedilol down to 6.25mg twice a day has done a LOT to cut through brain fog. I've gone from pea soup to mist. The other woozy/fainty and numby/tingly symptoms are still there but the improved clarity is wonderful. I called in my update to the doctor's office this afternoon; five minutes later I got a call back from his PA to please come in Wednesday morning. Ugh. I'm delighted to get good care but I don't know where this is headed. And orders for now: More salt and water. Fine! I'll go to Jones Beach with a bendy straw and start slurping it up.

My cardiologist, EP and neuro are all part of the same hospital group and work off of the same electronic record, the gastro and ENT also have access. All the diagnosis and treatment are there on one record and no one denies my dysautonomia as they all helped make the diagnosis. (win!) The cardiologist holds the reins, the EP rides shotgun and the neuro helps me remember the trip. The EP has been adjusting my drugs down since I met him; I see him every six weeks to three months--he is Dr TTT. They are my team. I've already had two callbacks and expect another later or tomorrow AM.

Cooking dinner is one of the hardest things I can do, I always get wonky. And I have to wash the dishes afterwards in the sink too 😞 I hate this numbness, it kept going on and off all weekend and I can't feel the front half of my legs right now. I walk like a human marionette, sigh. I just left a message for the EP. I have no idea yet which way this will go. Crossing fingers, ankles, knees, arms knotted in a twist--I lam a pretzel stick, lol.

I just got back from my EP, I think the world of him. I nearly fainted and fell off his table which upset the nurse--'I'm okay, I'm okay--I do this all the time.' Had a normal EKG but my BP was low again. The doctor couldn't hear it, sigh. No more lisinipril for now and if I'm not better to call him Monday and 'We'll figure it out where to go from here." More sighing. I told him I want a coffee and he said chicken soup, lol. I love him 😉

When I had the fissure I started to develop the pains in my legs and across my pelvis that I still experience. The colorectal surgeon recognized these symptoms as not being related to the fissure and had me see a bone doctor. I was xrayed and they found lumbar radiculopathy--which was corrected with my first script for PT. I also saw the gyno and had an ultrasound and he found nothing unusual. The gyno gave me a good explanation of the large ganglia of nerves we have at the base of our spine. The ganglia is as unique to us as our fingerprints so we can all feel pain differently despite similar cause of symptoms. The PT for the radicuopathy helped and I felt improved--yeah, because the back problems were treated, however all the other dysautonomia symptoms remained. Perhaps, if you haven't had a recent visit, call your gyno's office and ask if they should come in based on your description of what you are feeling. I called mine and they did schedule quickly so they did take the symptoms seriously. I wish you luck. It can be very frustrating to get your diagnosis and then learn how to manage your unique-to-you symptoms but you will get there.

Sensory overload is a huge trigger for many of us. I think it may also be one of the last we consider in how our symptoms are stimulated to erupt. There is a Stew Leonard's supermarket around the corner, it is the closest supermarket to my home. They have animated singing farm animals, dancing avocados and other horrifying cute things that suddenly burst loudly into song. I can't handle it without padded headphones and sometimes I wear a big pair of shades too, What I do now when I must go shopping is google a store's address and it will bring up the store information in the right hand column. If you scroll the column you will find the pace of store hours and be able to determine which days and times have the least customers. When I go when there is hardly a person in the store I rarely ever get an attack.

I don't drink ice cold water out of the fridge, it makes me very queasy. I do keep some large tumblers on the sink and refill them throughout the day--the water is ready in the cup and it's not going to hurt me to drink it, I do digest better without the icy freeze in my stomach. I hated walking with ear buds but as soon as I got a wireless headset I was out the door. I store song lists of my favorite walking tunes and I do it. I have a couple of dogs but I could let them out back like I used to do--now I walk them. It used to just be to the corner but I added in a little more slowly as I could. I also go to PT which I think was the right way to develop an exercise regimen that was tailored to me. Baby steps in the beginning. The doctor started me off with low counts of small movements to deliberately strengthen me before he made an increase so it wouldn't turn me off from healing. If you do similar, start with just a very wee few things, then you will be more likely to be successful. I'd be rapidly turned off from a heavy workout if I had zero energy. Don't do a heavy workout. Do a gently slow walk. Do you have any museums nearby? Go to one and enjoy looking at stuff, when you get home you may realize you also took a walk while you were in there--or do something similar elsewhere. Change your environment--go somewhere you have not yet been even if it's a park over in the next neighborhood. Any street fairs or outdoor concerts coming around? Go look at pumpkins. The point is to move your bod--a little does a lot more in the beginning than trying to meet an advanced goal. Treat yourself to doing less in the beginning. I recently came across a wonderful video set---the name was so charming I had to try them and I am glad I did. This is very, very passive, only a few minutes for the whole set and I felt better afterwards--win! STRETCH Tai Chi to Irish Music.

I've had two colonoscopies and I just my third motility series. I swallowed a Smart PIll last month. Hopefully, this time with a new doctor, I can get some help. I have gotten a lot of benefit out of physical therapy--I'm doing pelvic core for pelvic floor which has been helping me to strengthen my inner muscles so I can help push things along. On my worst days I fall back to IBS recipes--they don't make it worse for sure. If you can, try to eat more foods that contain electrolytes. When I do that I have a lot less problems.

Life still goes on. I went to PT today and the doctor got out the slide board (horrors!)...it's like speed skating but you only go side to side and not forwards. I started dripping sweat after the first minute. My legs have lots and lots of feeling now--ow ow ow. I've been drinking water, munching on salted pistachios and berries for electrolytes. Some aspirins and maybe a week's soak in some epsom salts will help too.

That sounds a lot like vertigo and/or sensory overload symptoms--they can go hand in hand. I don't get the spins but more often I have sensations of movement outside of my body--like the walls or ceiling are moving, or the sidewalk warps ahead or banks when I turn the corner. A couple of years ago Hubs and I were at a zoo and I lost sight of him. I was sudden in panic because I couldn't find him. I was so out of it I could not think to just use my cellphone to call him. I felt as bewildered as a small child in the same situation. I sat down on the closest bench and it was long enough for some relief because I only then thought to call him. As I was punching in the numbers there was Hubs standing in front of me--he had come back to look for me. This episode became part of my medical history and was an element of my dysautonomia diagnosis. Your primary can do a Dix Hallpike test in their office. It takes moments to determine if you have vertigo. I was prescribed PT and it has been tremendously helpful in restoring my balance. It's very uncomfortable to experience these symptoms but it can improve with medicine, like low dose 2mg valium taken as needed, or physical therapy. I do hope you get this all sorted out and feel better soon.

I scheduled with my EP, I'll see him on Friday. He handles my 'wonkies', lol. I appreciate everyone's well wishes. It's been about 18 months since my diagnosis and I've learned to better roll with the punches; I'll never be complacent about any of it but I do react better than a year ago. It will be what it will be.