WinterSown

I've been walking longer and further at night but I've started having some oddball symptoms like my legs going numb and last night two of my toes turned ice cold before I got home. Sat down in my chair and the numbness and icy toes went away in a few minutes. Never had icy toes before. I don't know if I should call my cardiologist, EP, the neuro, the DPT or my primary. Good grief.

On 7/29/2018 at 1:04 PM, Pistol said:

I often provided ignorant doctors with articles and studies to prove them wrong. 

IMHO, doctors don't like to be proven wrong--you can do yourself a disservice if you hand them a paper implying "See, I told you so!" Instead, bring to the visit some printouts in duplicate with the pertinent content highlighted, pass across the most important and tell the doctor, "I brought these so we can learn together." Honey works as well on doctors as it does flies, neither one is attracted to straight vinegar.

Perhaps visit a neurologist to find the cause of your headaches, they may send you to an allergist to rule out or find cause, but at the same time the neurologist will also be curious about the triple migraine that you think caused your symptoms. It might be a good idea to make a timeline of your symptoms and bring it with you to the neuro. Good luck!

It would be wonderful if they make their names available. We need a lot more doctors who can care for us.

You may suggest a physician. DINET will reach out to their office. If the doctor would like to be included then their name will be added to the list.

I am sorry to read you have a B12 deficiency but good news is that you now can start getting better, it's a manageable condition. You can eat your way to health too. There are a lot of B12 rich foods that make for a good meal. I was surprised to see clams at the top of the list. Yummy. 

https://ods.od.nih.gov/factsheets/VitaminB12-HealthProfessional/

Sounds like some very uncomfortable symptoms which you need to discuss at length with a physician as the forum cannot diagnose you. There are multiple forms of dysautonomia--they are not all POTS.  You should call your cardiologist's office and tell them that you are not taking the metroprolol because of your concerns. 

Yeah, tell him firmly that the medicine he prescribed is not working as expected and ask him to explain why you should stay on these drugs. Do they take longer to kick in? Are there others in the same class that would do the same? Do you call back in two weeks or a month if still no change, Etc etc. If he remains intransigent and doesn't help you then go doctor shopping. You need the correct medicine that will help you heal and as important, you need a doctor that will both listen and respond to what you tell them. Good luck.

This is very good news! You are on track to healing. When the right doctor is in there you just know it. Deficiencies are easy to knock down, it's a simple but excellent beginning. 

Hooray for an excellent day for you!

1 hour ago, zerohours000 said:

That’s a smart adjustment strategy! 

Amen. If it ain't easy don't do it.

5 hours ago, dizzytizzy said:

I know a lot depends on your location, but I use Kroger's Clicklist all the time now. Tried it out when I first became really sick in January and it's been a lifesaver.

Originally poo pooed the idea of someone else picking out my groceries, but got over that real fast when I couldn't hardly walk without presyncope symptoms.

Sometimes there a mess ups, like when an item is out of stock and they sub it with a brand I can't eat, but mostly it's been a great experience. I place the order and can pickup curbside about 4 hours later.

I'm having problems with waiting on line. I can walk through stores with no problem. It's when I stop moving when i wait on the check out line that I get presyncope or full drop attacks. I don't like when strangers see me shudder and shake. The two local markets now have a delivery service. I have to make up my mind that I want to do this but everytime I have an attack I think, "Oh, it's just this time, it won't happen again.' Then it does. 

23 minutes ago, zerohours000 said:

Awesome.  Looks great!

It was not complicated to make one bit; I cannot handle a complicated recipe. I like this--making new things--it's satisfying. And this is healthy too, a little sweet, but still healthy. 

20 minutes ago, Pistol said:

Yumm!!! And I LOVE THE PLATE!!!!!

Let me cut you a slice :-) The china is pretty, it belonged to my MILs best friend, Arlene. She was a piece of work--nine types of attitude and sassy all the way to her end. I loved her dearly. When Arlene passed her china came to live in my home and when I need a smile her plates are on the table.

2 hours ago, Alystew said:

I need encouragement. 

Anyone personally or know people who have mild pots and live a normal life? Kids, work, outdoor activities? 

My pots isn’t that bad and some days I question my diagnosis based on everyone else’s experience with it. 

High heart rate, especially in the mornings, is really my only symptom and I should just probably stay off google and stop checking my heart rate constantly and just live my life. But I’m scared. Everyone’s experience seems so much worse than mine and I’m just here almost waiting for it to get bad. 

Anyone have just mild pots and it’s stayed consistent? Anyone out there living life like as you always have? I just fear for my future and I don’t want to let this hold me back from truely living. I want to be able to do all the things with my children. 

 

 

My symptoms swing from better to worse but it doesn't matter, life must still be lived. I suggest you celebrate mild symptoms!!  I'd be doing the happy dance!

You can keep your symptoms mild as can be by practicing good self-management. Eat wholesome food, keep hydrated, exercise everyday for perfusion, and be creative and/or learn a new hobby--keep your sense-of-self as well taken care of as your body. Keep your hands and mind active with enjoyable activities, it's okay to have fun. Especially with your kids.

I don't do 'I'm scared' as an attitude anymore because I found it to be self-defeating. I switched it to 'I will beat this!' and I started to get better. I made a few changes in how I live my life and I can continue to 'live', to ENJOY life again. I know what I need to do to stay as healthy as I can. I accept I have dysautonomia and that its symptoms can swing in and out from a mere bother to full syncopal attacks. So what. I rule it, it doesn't rule me.  I control my self-management, I make decisions first about my care--I don't let dysautonomia rule me. My attitude is that I will improve and I will do it tooth and claw and I will fight for this. I will not lay down and give up. I may lay down when i need to but I get up with determination to get back to living my life.

I couldn't sleep last night so instead of tossing and turning or watching the tube I went into the kitchen and made something. I started to go through my old cookbooks to find any fast cake that I had all the ingredients. I had enough to make a small coffee cake but the recipe was not for baking it in the oven. The original recipe says to steam over water for two hours. Nope, I didn't do that, Instead I steamed it in my pressure cooker for an hour--half the time it would take on the stove. I never made a steamed bread or cake before so this certainly qualifies for my neurotherapy--I did something I've not done before. Yeah. I'm having a slice now with a mug of coffee. Steamed Date and Nut Cake is an excellent breakfast.

I'm an ex tech. It sounds like you experienced moving in and out of consciousness, almost like a twilight sleep. That's fine, that's normal.

What happens when you faint.

This is a list of foods that are high in histamines.
http://www.histamineintolerance.org.uk/about/the-food-diary/the-food-list/

I've been knocked out for surgery and testing at least five times since my symptoms showed up. I was well hydrated before my 24 hour fasts, I didn't have any problems except some initial queasiness when I woke up which I suspect was a symptom of depletion because I hadn't drank or eaten anything recently. I was groggy for a couple of hours but that is normal for anesthesia. If you have concerns call the office of the anesthesiologist because it's their call in the OR. Discuss your concerns--ask their advice about what you can do to reduce your symptoms and stress.

I sympathize, I am heat sensitive. Take a damp wet washcloth and rub your skin up and down on your legs, arms, neck, face and your scalp too. Then get under a fan. The cooling effect feels great. You can also wet and wring a top sheet and get nekkid underneath it with a fan blasting the sheet; that is an old-time fever buster. Cold milk (cow or soy) are both loaded with electrolytes. Sometimes you can lose your appetite and with it your thirst; being depleted on both calories and fluids can exponentially increase your symptoms. Milk is my go to for replenishment and hydration. Be cool! 

We had bottled milk delivered to the door. Every week my Mom bought commercial-size boxes of dunker oatmeal cookies from Dugan's. We'd come home from school and I'd watch my brother and his friend put down a few quarts each with a whole case of cookies dunked and gone. He grew up strong and tall. Bro got cookies and milk, I had egg shakes. All of the girls had an egg-shake everyday. Milk, a packet of Instant Breakfast, and a whole egg--shell and all--went into the blender and whirrrr. Mom said she didn't want us turning into bent-over old ladies so that's why the egg-shell went in.  I never had symptoms as a girl and I wonder if the calcium was very important for that--it's helpful with osmostic fluid transport in our cells. Maybe I should nibble on a cuttlebone, lol. 

42 minutes ago, POTSGIRL123 said:

Winter would you mind sharing the name of your doctor with us so we can know a great doctor....My doctor was in North Shore Long Island too..his name was Dr. Bogonese   ....thanks 

 

 I will PM you.

13 hours ago, StayAtHomeMom said:

I hope his is just from growing. He grows for 6 months and then stops for six months. When his symptoms started he grew 4 inches in 6 months. He is 5'10" as of a month ago but I suspect he is hitting a growth spurt again. It kills me when he laughs at my shortness and he gets something for me on the top shelf at stores (I am 5'4"). Or puts dishes away and forgets I am short and puts stuff I need on the top shelf. Lol

Seriously, you would be a giant among women in my family. 

At the supermarket I get the biggest smiles from people when I ask them to be tall for me.  My brother went to a sleep away summer camp--he came home after six weeks and was six inches taller. His cuffs were up to his calves! My uncles also did this when they were young. Maybe ask the men in the family if any of them had similar growth spurts--it could be familial and nothing to worry about. 

40 minutes ago, songcanary said:

I am so happy to read your post.  It is such a good feeling to be cared about and it can change everything.  Similar thing happened to me many years ago and I cried happy tears, too!   Sending you my best wishes.  

I'm so glad you wrote that. Hope isn't something fake and getting better isn't impossible though it takes a lot of determination. I believe in healing.

My MIL slipped in her bathroom, fell into the tub and broke her hip.  She fell in the hospital and didn't tell anyone--her screws ripped out. She had more surgery and fell again and didn't  tell anyone again. More surgery. The family has arranged for an aide everyday, including weekends. We're hoping that if she falls in the evening she will tell us or the aide. She is walking better now but is in pain still. Sigh. 

If she still smoked we'd roll her a jay 😂 

21 minutes ago, StayAtHomeMom said:

I am only 32 and for me it was like a punch in the gut at first. But now it is more my body is broken, it reacts funny to things, and is weird. It is OK. I just had to change things up a bit.

 That is exactly how it is!

I am so sorry to hear about your son; I hope his symptoms lessen soon.