WinterSown

I am thinking of calling tomorrow.

I do see a DPT twice a week, one of my scripts is for cervical radiculopathy. Half my head going numb is new though. It's always something.

I can't stand this, I'm walking along, doing nothing too active, or too slow, and then I feel my left leg go numb from my butt down, and then the rest of my left side follows along soon after. I can't put my weight on my left leg or my leg buckles--no feeling at all--like it's missing. Arrrggh. In thirty minutes or so I am back to normal like nothing had ever happened. I've had numbness and paresthesia for a while and they're treating it but not this bad. If it increases in frequency I'll call one of my doctors--cardiologist, EP or neuro, which one, which one--ehhh, I'll figure it out.

I was not diagnosed with hyper-Pots. I have OI, VVS, Vertigo, Paraesthesia, Gate imbalance, Dysmotility, a PEH, no sleep cycle or appetite, and sometimes my symptoms swing over into POTS but my numbers are generally low to the point where I get Drop Attacks which is fainting without losing consciousness. But no Hyper Pots. Gosh, I hope not that too. Everybody reacts differently. We all so very different in our sensations as well as our physical reactions. Also, keep on mind that none of us are stable in our symptoms. They can change from minute to minute. How you are today may not be how you are tomorrow. Initially, a dysautonomia diagnosis is as difficult to manage as understand, but through trial and error your doctors will help you get better control of your life. It's vital for you to keep in contact with your doctors even to just leave phone messages about how you are reacting to medicine, diet, etc. They need to know your quality of life in order to adjust your meds and treatments. If you are not improving let them know. If they don't react let them know again and again...squeakiest wheel still gets the most oil at the doctor office too.

There is no positive or negative, no win or fail on the TTT. It's not the POTS Machine. All it does is show orthostatic intolerance during the test. Your test numbers, along with observations during the test and your medical history will guide the doctor towards a diagnosis. I didn't faint. I didn't even get close. But I still got a diagnosis. Concentrate now on a plan of healing with your doctors. Medicine, nutrition and exercise are going to get you better--it will be some trial and error but you will learn how to take care of yourself and minimize the effect of your symptoms. Be well.

My MIL is in her 90s. She's fallen and she couldn't get up. She had hip surgeries and was in and out of the nursing home. Finally, we have a home aid for her seven days a week but it has been very expensive. She will likely run out of her money and benefits in another year or two. She's not well but she's done a good job of hanging in there. Kudos to her. We found it best to work with a lawyer to get her finances set up so she can have the aid. Honestly, I live in a small house and don't have room for her. My SIL frequently hosts her but it has been disruptive to the house with one of the kids giving up his bedroom and sleeping in the den so grandma can sleep in his room. Contact the local hospital or senior program of your county and talk to them about your concerns. They will know the local resources and programs that will help you as a caregiver. Good luck.

I would celebrate and rejoice not having symptoms during your exam, or any other time. Your doctor knows that dysautonomia symptoms wax and wane. Finding balance in my daily life has been one of my cardiologist's most important goals--it blows my doctor's minds when I come in looking good and walking well. It means I am doing what they have recommended and they LOVE that. Doctors love to not just know but see you are making that effort--it's in your attitude as much as your numbers. We do swing in and out of severity with our symptoms, everyone of us does. What happens today will not be what happens tomorrow, or tonight or next week. Everyday is a different set of symptoms to match how you tend yourself. Are you getting enough water and sodium, enough of all the electrolytes? Are you walking or doing other exercise? What are you eating? Are you remembering to take all your meds? These are things you can talk about with your doctor at your appointment--let them know how you are handling life and its challenges. Not having symptoms when you visit means you are doing something to reduce them--let that beautiful accomplishment shine through with pride. Do also talk about your worse symptoms and what you are doing to reduce them. If you are having a good day share with whomever will listen. Sadly, a lot of us do not have them too often, so when they come throw a party in your own mind and celebrate those good days.

It will have to be removed by surgery when I am ready. I have been to the chiropractor before--I had pinched nerves in my neck. Wonderful relief.

Compazine gave me lockjaw. Not a happy drug for me. Reglan made my tongue jump around in my head and I drooled all the time. Endoscopy showed I have a paraesophageal hernia--four inches of my stomach are up through and above the diaphragm--running right along my vasovagal nerve. When I upchuck it feels like a lightning bolt going through me and then I faint. Yipee! Prilosec 40mg has been the most helpful. It cuts down on bloat and GERD. I'm happy with it. I do eat veggies and fruits but most I cook in the microwave twice, then I freeze some of them into serving packets. Microwaving and freezing are wonderful ways of breaking down the cellulose and making food more digestible. I can eat watermelon without a hitch, and thats wonderful because it's loaded with electrolytes and water. Good stuff it you can digest it. I love this book, I bought a used copy a few months back. Recipes for IBS. It has a lot of good advice and is very informational. The recipes are bulleted so you know which are recommended for how you are feeling.

You can have spinal problems run concurrent with dysautonomia. I have numbness and tingling in my limbs as well as gait and balance problems walking. I was sent for xrays and sonograms and they found spinal radiculopathy in both lumbar and cervical regions. Prescriptions for PT did a great job of relieving a lot of the symptoms from the radiculopathy and increased my mobility but the dysautonomia symptoms are still there. I am 61, these are common afflictions of age, or either work related or sports injuries if you are much younger. I would call your neuro's office and describe your symptoms and ask if they would like to come in or refer you to another specialist.

You don't have to get the spins from vertigo. I think in the past few years I've only felt that once or twice . Generally, I see the walls move, the sidewalk elongates or turns and rolls--even feel like I'm walking a banked path when we turn the corner. I have problems with single steps and the slight angle of wheelchair ramps on block corners, gait imbalance and falling over to the side, the ceiling visually coming down making me wonder if I'll get squashed by the grid between the tiles, lol. You can certainly have a sensation of movement outside your body but it doesn't have to go in a circle. If it bothers you again be a little more pushy with the doctor or go someplace else. A Dix Hallpike takes about 20 seconds, if that. I am surprised your doctor did not do one on the spot once you said you were experiencing dizziness.

Have you yet been tested for vertigo? Your primary can do a Dix Hallpike test in their office, they will know in moments if you have vertigo. Vestibular PT is a corrective blessing, it should improve your balance, gait and core strength. Last year I wrote a newsletter article about my neurotherapy called 'Walking out of the Fog'; I still practice this everyday and it has been wonderful for improving clarity and cognisance. As important as neurotherapy is eating a well-balanced diet. I get all my nutrients from the foods I eat and drink--zero supplements. My cardiologist recommended this and it was an immediate improvement, it got much better when I increased my percentage of foods high in electrolytes.

My opinion is that deconditioning is temporary but it can make you feel off for a long time. Even a week or two off from your regular routine can lessen your energy levels. It's important to power on through the next few weeks to restore what you've lost. An increase in your nutrition helps too--eating a well balanced diet with plenty of foods with high electrolyte content helps immediately. It's possible that pregnancy effected your condition but only a doctor can diagnose that. There are several conditions that cause blood pooling, you can read up on it and bring them up with your doctor. https://www.webmd.com/dvt/dvt-venous-insufficiency

I've been looking into buying a rolling stool for the kitchen. Drafting stools seem the best purpose so far. I love baked rice, especially the crunchy edges. YUM. I just bought two fresh cod loins. Out of the freezer I'll need a bag each of mirepoix and pepper strips, from the fridge a handful of olives and half as many capers, some spice for the fish, and a can of stewed tomatoes from the cabinet to dump over it all, then into the oven at 400 for about thirty minutes. Takes five minutes prep and so good when it's done. It's nice over baked rice :-)

My right hip 'boinks' when I walk, it does make a small noise. When I bend sideways to the left the sound goes away, or when I turn my right foot outwards and walk it goes away then. Something in how the bone is cushioned in the socket is slightly askew. It's more a curiosity than anything, I've had it for a least 30 years and it has never caused any pain.

Perhaps call your neurologist, describe the symptoms, and see if they want you to come in for a visit. Your arms turning and hands clenching is an unusual symptom. I used to wake up with my fingers overlapping like a compressed spiral staircase. I have bilateral carpal tunnel and it can cause my hands to curl inward while I am sleeping.

When I was first diagnosed I was sleeping a lot. It increased even more when I started PT--I was exhausted when I got home and would sleep through the rest of the day and most of the following day. Fifteen months later I have far less exhaustion. I still lay down six, seven times a day but it's just laying down until I feel stable and ready to get up a few minutes later. I did have a big increase in energy when, on my cardiologists orders, I stopped taking supplements and started to get all my nutrients from the foods I eat and drink. Eating a balanced diet was a huge and immediate difference--not weeks later but a couple of days later I started to feel much, much more alert and I was more active, less fog and more energy.

I am a coffee addict. It keeps me conscious. I'm drinking Peruvian right now. I have come across varying opinions from all my specialists. The colorectal surgeon doesn't want me having a drop. The cardiologist is okay with me limiting it to two middle-button-on-the-keurig cups. They have a coffee pot at the neuro and the local brain institute has a full keurig bar with a gazillion flavors of coffee and creamers--wow!

Next time you are at the pharmacy check out their selection of pill splitters. I bought one for under ten bucks and it does a great job cutting pills in half, even ones without the line down the middle.

It is a known side effect, you can check online. I'm off it for at least five more days. Swallowed a smart pill this morning and can't do anything that causes soft stools.

My EP has me chopping in half carvedilol. No problems.

Yeah, I know it doesn't turn me into a happy person overnight. #sarcasmlost Nor do I think I will be happier tomorrow or a month from now if the side effects don't end. When does the diarrhea go away? Did that taper off eventually?

I started Lexapro two days ago. I do not like the sensation that there is a film/saran/clear wall between me and reality. We all get effected differently but this is just freaky, I hope this fades as I get used to the medicine. And the loose stools are not fun either. How am I supposed to retain water if the Lexapro is causing me to lose it? I am no fan of this drug, I don't know if I will continue with it past the weekend if my side-effects do not improve. There must be something better than this sensation--if this is happy I will take back my sad.

If only salt could make me puff up like a glass of wine. I have extra salt on everything and meh, not much retention. I have four ounces of pinot gris and I'm bloated for two days.

My cardiologist is going to drown me from the inside out. I said 'I'll go live in the ocean.' It didn't float with him. And less starch, less carbs, less proteins, more veggies and fruits. Keep walking, keep exercising your body and mind, keep doing stuff, and let me know how it all goes. I gave him a hug, said 'Three months.', and I was out the door. It should always go this well. Everywhere.