WinterSown

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/

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.

54 minutes ago, HangingByAThread said:

I just polished off a Chipotle steak burrito, minus most of the rice (1,330 mg sodium), to be followed in 2 hours by the chips and guacamole (760 mg).

Yum, needs a cold brew too.

Education over Adversity.

Ramen, fritos and kefir. 

51 minutes ago, ANCY said:

Sorry you are having such trouble, I hope you find relief soon! It is such an uncomfortable situation... 

I use a mix of diffrent laxatives, linzess, suppositories and enemas, and even then still have trouble. My GI is actually doing some manotomy testing Friday because he thinks there may be some new dysfunction/lack of function with the rectal muscles.

I would caution that there is the possibility of a bowel obstruction with this set of symptoms. You can still pass small amounts of stool around an obstruction. If so, using miralax or osmotic laxatives could be life threatening by stretching the bowel so far that it bursts. There is also psudo obstructions to be aware of... you should be able to look up some past posts about that. 

Good luck!

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.

1 hour ago, KiminOrlando said:

That explains a lot. I find that doctors who have had to be patients (cancer, lupus) or have close family who are patients are also very good.

Add this one to our physician's list. We've got another one!

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.