WinterSown

It makes me worse, emails in particular make me have to go lay down. I can only work online about ten to fifteen minutes at a time. I also can't watch the tv or a movie straight through.

I wish walking a half-hour a day would make my symptoms less or make them go away but that hasn't happened and I walk about 90 minutes a day. What will happen from a half hour walk is that your body has better circulation, your head gets some fresh air and a time for personal reflection, if you are effected by motility problems the walking will lessen them, and you get vitamin D from the sunshine. It does not make your symptoms go away or lessen or we would all walk 24/7. If your doctor ordered you to walk then walk. It's not so hard if you start by walking to the corner, and then around the block, and then a few blocks longer. Take baby steps to start any exercise plan and slowly build up your endurance. I wish you luck at your appointment.

Yes, most certainly. He's the doctor who gave me my TTT, I did not pass out but with good dialogue Dr Bender still made the diagnosis. I was explaining to him then my Venn diagram of light-headedness and he said 'Vertigo, what do you mean by vertigo?' And then he asked the winning question. He asked the right question. "What makes it feel better?" I said I go lie down. And that was how it was done. After that I started learning about dysautonomias and wandered in the door here. My new shirt arrived. Photobombed by my balance board. I practice on it almost everyday.

I hope the visit goes well for the girls. I'm keeping my fingers crossed for your family.

I saw the electrophysiologist this morning. My ecg was fine and so were my numbers even when I was so lightheaded and dizzy I thought I was going to either hurl or fall off the table--and he checked and checked and checked. My numbers are always fine at visits. lol. There are some wonky numbers showing in the recorder but nothing scary, nothing dangerous. He cut some of my meds in half to raise my BP. I go back in two weeks and he wants to see the balance test results from the test I will have this weekend.

I have never heard of that but some is familiar. I am seeing the electrophysiologist tomorrow morning, my physical therapist in the afternoon and the balance test is on Saturday. Hopefully, I can soon stop wearing my monitor, i"m starting to look like an octopus hugged me from all the rings on my chest where I pulled off the pads to change them. I'm not allergic but that glue works really, really well. I know I've got some wacky numbers on the monitor, I want to see what he says.

Welcome to the group, nice folks here!

I am sorry you were misdiagnosed. They will be looking closely at my vertigo and balance history; the physical therapist has already forwarded his notes to the ENT. I have POTS and Vertigo, I don't have any ear conditions otherwise. I had two positive Dix Hallpike tests last year and completed Vestibular PT which helped a lot with my balance and overall strength.

Baby Giraffe Syndrome. I do like that name, that's perfect. We have zebras and now we have giraffes. LOVE it! May the neurosurgeon give you some insight into your daughters conditions, I am hoping for their best possible outcome.

A couple of years ago, prior to any diagnosis, I went through a period of bizarre sensations in my legs that felt like parts of them were gone, not numb, gone. It was as if you had painted them with invisible man paint and they were not there. I was seeing and feeling them but my brain was telling me they were missing. Fortunately, I always had feeling in my knees and ankles; I taught myself to walk without limping. The worst sensation that I could not walk well ever was when my calves vanished--you say walk around like a baby giraffe--that is a perfect description of being so wobbly because it's not just being able to gain your balance, it's also having the strength to straighten your stance and correct your gait. In hindsight, if your Achilles tendons are compromised(?) you are going to have some problems with holding yourself erect and walking. I turned on the keurig. I have apple cake.

Thank you HangingBaT. We were having a big problem too with take-out more often than occasionally. It does help to lay everything out and double check. There is a whole world of few-ingredient recipes that do it well and delicious too. I can toss raw chicken with any bottle of salad dressing, let it sit for a bit then drain and bake it until it's done. How easy is that! Throw some spuds or yams into the nuker as a go with and add some fruit or something green to fill out the plate. I can give Hubs a sandwich 24/7 and he's content; sometimes I bake them, sometimes I make cold meat and cheese, sometimes a panini in the sandwich maker. And I love the electric pressure cooker. Sometimes I have problems with slow motility and don't digest well, I've lived on flan and egg custards I've made in the pressure cooker. And I make hard boiled eggs in it too--and they peel better than boiled.

I was thinking about it myself. I recently had to hang up my keys and now walk to the corner supermarket. They have a two layer cart which is about the size of a rollator. I felt so well balanced while I was pushing it, I could also lean on it and it was stable. My MIL, who is now 90, had hip surgery last year. She is able now to use a rollator and get out of her wheel chair. In the beginning she had to wear gloves because she was not used to the gripping, her palms were chafing as her skin is very thin, it is age related. She wore lined golf gloves and the chafing stopped, she only needed them a few weeks until she was used to using the rollator. I would check online or in the local papers for garage sale listings, they often list medical equipment--If you see one get there early. Check the Salvation Army or other thrift stores. I checked Amazon, rollators range in price but the inexpensive ones are four stars. https://www.amazon.com/s/ref=sr_st_price-asc-rank?keywords=rollators&fst=p90x%3A1&rh=i%3Aaps%2Ck%3Arollators&qid=1505258534&sort=price-asc-rank

I went to an ENT today, my cardiologist wanted me checked out for labrynthitis; I've been tripping more the past few months. I may not have that. I tested negative on a Dix Hallpike, so no vertigo today. YAY! I was hearing tested in a booth and my hearing is just fine. Yay again! I will be balance tested in ten days; there are some drug restrictions and I won't be able to take my vertigo diazepam script for 48 hours before the test. No coffee 24 hours before the test, either. I'm more freaked about giving up the coffee. The doctor talked to me about Drop Attacks, which I have never heard of, she said I have parts of something called Otolithic Crisis of Tumarkin (another name for Drop Attacks) which could be related to Menier's. Drop Attacks are explained as suddenly falling without losing consciousness , and I usually fall to one side after my world tilts sideways; I always trip towards the right. After the balance test I will likely see a Neurological ENT for something which I can't remember. But I do remember her telling me twice that it is unlikely there is anything that can be done to help the condition. If they can't find the cause they can't treat it. Crisis? Feh! I'll be in my blanket tent coloring and I'm not coming out until dessert. I want cherry pie and darn good coffee.

I refuse to be defeated. I made a cake from scratch. Not a layer cake, just a plain no-frosting cake. Simple, but I did it. I paced myself and went step by step, no rushing and I got it done. I looked at the pan after it came out of the oven and I cried for the joy of it. My neurotherapy has me doing and learning new things but I wanted to do something I used to do with ease. I made a cake--new recipe to me--it's something I have not been able to do for a long time because the fog makes it hard to understand what I am reading the first five, six, seventeen times. Cut yourself a slice, I'm gonna have a cup of not-supposed-to-be-having coffee with mine. Sometimes, the little things are worth celebrating.

Thank you Ellen, he did drive me, Hubs took the day. He's in construction so he leaves early and comes home early, our son goes to work later in the day and gets home well after dark. So, we talked our plans for future appointments and either of them can help me later or earlier--depending. Hubs is doing PT at the same center too, I just got an OK to go back to PT. We already spoke to the therapist and he will schedule us together--there is an awesome (just so AWESOME) little supermarket on the way home and we stop there. They did put a new Stu Leonards around the corner and I can go there when it's quiet, when it opened two weeks ago I got stuck under singing cows with a monkey that kept dropping out of the ceiling right above me; I thought I was going to explode next to the apple fritters. I know the markets here will be accommodating, I checked that out when I was first diagnosed, they will help me with a personal shopper--the carts are there if I need to use them but I don't think I'm there yet in my head. I can be willfully thick and pig-headed stubborn, it takes me more than once or twice to learn. I'm thinking of getting a walking stick to lean on, then go over to the local dojo and learn how to use it as a quarter-staff--I could do that. Yesterday I called the laser-printer shop as I needed a set of toner, I usually drive over and pick it up but I asked them to send it--which I expected to have UPS drop off but we came home today and all the cartridges were at the front door--they dropped them off in person. How sweet was that. I can set up PeaPod, which is a grocery delivery service, and/or start ordering a lot of it off of Amazon Prime--I am using Smile.Amazon which will always create a donation towards DINET. That was so easy to do, I just went to Smile.Amazon and selected to support Dysautonomia Information Network, I think there is a search engine to assist with that. Just hit select and that's it, they don't raise their prices, everything is otherwise the same. I saw my cardiologist today, I like him, he asks me questions and lets me answer on and on and on, he's definitely one of the good guys. It may be two separate things. First, he scheduled me with the electrophysiologist who I see in a couple of weeks. It looks like I may indeed have a loop recorder in my future, it's not unreasonable. I've been doing an upswing in presyncope but my numbers are fine. I keep reminding myself that's a good thing. The recorder will hopefully pick up the cause. Next, because I have an increase in vertigo symptoms I need to schedule with an ENT and get checked for Labrynthitis, I've been walking the dogs at night because of less triggers but my perceptions have been getting weirder and I start to feel and walk drunk after a few blocks; I fell into bushes last night. Dr D'Anca said that the new recorders are half the size of the older types and that they can leave it in for three years. For now, I get to go back to PT but I am pretty much grounded, no driving until they determine cause of the fainting; if they determine cause and it is correctable. I've been thinking about driving lately, I wonder if I precogged myself. I remembered before I left to tell my doctor how happy I was with the epsom salts face scrub he told me about last visit, he wanted me to try it but had just heard and didn't know yet if it would help. It really is an awesome energy boost, and my skin is so smooth too. And I think I have some more clarity between presycope events. Magnesium rocks! He smiled when I told him to 'Tell EVERYONE!" My doctors are as human as everyone else and when they get it right they should know it, I do tell them. I took a long nap after I got home, I made french toast with instant bacon for dinner. Comfort food. But good. All in all it was a good day, I feel more positive knowing what lies ahead. T

Thank you. I am having comfort food for breakfast. Hubs got me a cup of McOatmeal, I am having a bowl of kettle chips on the side. Crunch crunch crunch. I am doing well walking at night, there is less visual and sound triggers. Yesterday afternoon I took a walk to the strip mall on the corner for some errands. We realized that Hubs will have to take another day off from work to take me to the cardiologist, I don't want to do a cab or take two buses by myself right yet and he agrees. His boss has been very good about that and we're crossing our fingers that he keeps his sense of humor and understanding--you never should take that for granted. He usually gets home around 330pm so from now on, until I can drive again, I will have to schedule "I'll take the last one" appointments from now on. I used to stop at the market on the way home from my doctor visits but I can't do that now. I am dreading having to set up an online supermarket account but it may be in my future. For walking I am good but for other exercises I am feeling kinda wiped out too soon. I'll try my balance board again later but after a few minutes I gotta go lay down.

I have short term memory problems. I just remembered that the primary asked me if I had a loop recorder. He's gonna talk to the cardiologist and I think this might be in my future. I want to scream at the ocean and if I could drive I would. So I'll just drink a coffee and eat tortilla chips instead. I'm going back to my blanket fort.

No. And he was very specific about asking the sensations I had both times before fainting--what I thought the differences were. He said that usually people who faint from cardiac issues do faint all of sudden without warning but that they usually are also badly banged up from bashing into something as they fall. I went down on an empty deck, there was nothing to hit in front of me and my head missed the door by a couple of feet. I didn't have any jars or cans, just produce, bread and shaved ham. I got really lucky. I just got back from walking dog number three. I didn't make a real mistake on the walk, but she was very well behaved when a man walked by us on the sidewalk so I bent down to pet her and praise her for being good, and I should not have done that. I stood up slowly but fifteen, seventeen seconds later I had this new sensation of the 'energy' in the center of my chest vanishing, much like the wind dispels smoke. I immediately recognized it as something I experienced right before I fainted. As I walked home it happened a few more times, I didn't drop, I was able to walk through it and by the time I got home I felt much better. I went to the bathroom to wash my hands and I looked at my face and saw a ginormous welt with a V on top, going from an inch above my eyebrow, down the side of my eye, down my cheek where it started to taper and it continued down until it disappeared into my collarbone. It lasted about a minute longer and I am sorry I did not take a video but if there's a next time I will. I don't feel emergent but I am pretty freaked. I'm gonna have soup and croutons for lunch, the day goes forwards.

Two days ago I had a great workout in the afternoon at home, lots of core and legs, felt strong after, not tired or exhausted. Went to the supermarket afterwards, it was not crowded and I didn't have to wait on the checkout line. Yay! Grabbed the bags and drove home. Got out of the car, walked up the stairs and fainted on the deck in front of my front door without a warning. There was no sense of the energy suddenly draining out of me like last time, no hint, no half-moment of knowing, I just went right down and landed with my groceries underneath me. Lights out for just a moment or two and I was alert as Hubs helped me up and inside. A few minutes later I felt better and I chose not to go to the ER that night. The next morning, yesterday, I made my appointments. I see my cardiologist next week and my primary saw me in the afternoon. All my numbers and EKG were great, natch. I am now, at this time, forbidden to do strenuous exercise, use a ladder, or drive. I thought he was going to tell Hubs to not let me cross the street without holding my hand. We ate dinner, I took a nap and spent the night with one hand grasping the other wrist and squished up like a tight ball in my chair, I've gotten good at compressing my blood vessels without thinking about it. Had to cancel PT, can't go anywhere and do anything except walk the dogs to the corner and back. Aaaarrrgghhh. I will be in my blanket fort coloring but I will draw the line drawings first; creative neurotherapy continues. Never give up, never surrender. And, best doctor quote so far: 'Wonder Bread is a wonder." I only skinned my knee :-) Gotta say, I love my primary.

So nice to have you all here!

Why don't you call them ahead and ask their protocols, let them know you are nervous about fainting and want to know how the staff might handle that if it occurs during your tests. I assume they will let you know that they have procedures in place and may even explain many of them to you. After my diagnosis I began to notice that several of my doctors keep ammonia packets taped to their exam room wall right over their counter of cotton balls and tongue depressors. One of the cabinets is also labeled defibrillator. I never noticed any of this before but I assume they were always there. I wish you luck with your tests, may you have the best of all outcomes. T

You can go to any doctors or service you want with a prescription, you are not forced to use the people that the neuro wants you to see. Tests are tests and are done accurately by the same standards and procedures. His radiologists will do as good a job as the radiologists near you. I haven't had skin biopsies but I've had my head scanned numerous ways with and without dyes. They will ask your allergies. I didn't have a problem. The radiologist group I use has several sites and my records are accessible at all of them. I continue to use them because I also am comfortable with their care. If you have used a particular radiologist in the past and you like them then go back for your scanning.

HI to everyone.

I just got back from my quarterly check up at my primary. Great numbers 120/78, he didn't even mention the pulse so that rocks. I got my annual flu shot. I love my primary, I never know which way the conversation is going to go but it's always interesting. I brought him a copy of The Dysautonomia Project and we talked briefly about maintenance, the difference between kefir and yogurt and how to make them both, how to make beer (fermented too) and about other doctors, partiularly good ones. And he said, "Trudi, most doctors are sphincters (not his word). Drop the bad ones, don't go back." Best medical advice I've recently heard!

I am sorry you are going through this, I never heard of this, and had to read to learn you must be very uncomfortable. Some of the articles I read suggested antiperspirant or salt baths could be helpful. You certainly should talk to your dermatologist about changing your drugs or maintenance. Something with lidocaine would be great. Call you dermo and ask if you can use a topical cream that has lidocaine in it, with your swelling and wrinkling I might ask about using a hemorrhoid product. I wish you well. https://www.dermnetnz.org/topics/aquagenic-wrinkling-of-the-palms/