Newly Diagnosed, Need Advice

[Steph]

I was diagnosed with dysautonomia on Monday after bouncing back and forth between appointments for a year and a half and being symptomatic for some time before that. My cardiologist said that he'd suspected it back when I saw him in November, but he wanted to order an MRI first to rule out something else, which was why he'd told me to increase my salt intake (it hasn't helped yet) and then I had problems getting his office to book me a new appointment.

Anyways, my head was all woozy and I was confused at the appointment, so I didn't ask a lot of questions that I should have. Also I can't really remember a lot of what he said. (This usually happens when I go to the doctor's office, but I'm writing down notes and questions for next time, hopefully I'l remember to look at it.) I've been doing as much Internet research since then as possible, but the doc isn't going to see me again for 2 months. I am seeing my GP this coming week, though, but I don't know if she'll be familiar with it.

Right now I'm on Florinef, and the doc said to keep up a high salt diet. I think maybe my increased salt intake wasn't increased quite enough, so I'm trying t bring it up. Question: how much salt do you guys find is necessary to make a difference? And how do you get it? Also, re: Florinef; how long before I can expect to see an improvement if it's working for me?

Are B12 shots any good? My mum suggested I ask about them.

I've heard about compression stockings, I'm trying to find some locally. Is there anything else non-medical that can help? Any recommended exercises?

What kind of questions should I be asking my GP and my cardiologist?

These are my symptoms that seem relevant from what I've read: (in no particular order)

dizziness/light-headedness

fatigue/lack of energy

occasional fainting, less-occasional 'falling'

headaches

cold hands/feet

difficulty concentrating, confusion, memory 'glitches' (while standing/walking for long periods)

noise/light sensitivity

insomnia

easily overstimulated/bothered by crowded areas

poor reaction to stress

Thank you for any help you can give.

[Guest tearose]

Welcome Steph!

I'm a bit tired this morning so I won't be as "good" with suggestions. I wanted to welcome you anyway.

It is going to be an ongoing journey so take it slow and steady as you learn about treatment plans and make adjustments.

I can not tolerate medications so I take salt in my foods and electrolyte supplements. I use compression panty hose over another compression garment and I have a seat cane to use as needed. I stay as active as I can without over exercising or over extending my physical energy levels...at least I try not to overdo!

I take vitamins, eat small frequent meals, rest, and live each day as a new day. It is not a predictable type of syndrome so one week may be lightyears better than another. You will have to try numerous things to find what works for you.

My exercise may be as "simple" as doing dishes one day and then another I may be able to do "more" and walk for a mile on a treadmill. I would suggest you start more simply like with floor exercises and work up to more as you are able. If you are already exercising, just be aware not to overdo or you may have more fatigue afterwards. Keep track, write things down if you can. Notice any patterns.

If you can, try doing a search on specific topics that may be in history here. There is a lot of useful information that is worth reading through.

I hope you will find our forum as helpful as you need. We are like family. There are many wonderful fellow travelers here and I am sure you will find support.

best regards,

tearose

[Steph]

Thank you!

I've been going to karate twice a week, although I don't always make it when I'm having a 'bad' day. I find that the wide stances are stable enough that even if I'm very dizzy, I don't fall over - and the sensei is very understanding when I need to sit down from time to time. I usually feel quite well by the end of class and for a few hours after, as long as I haven't pushed myself too far. Of course, the next day I'm absolutely wretched, but I think it'll help in the long run.

I'm still able to go to class on a reduced course load as long as I can get myself out of bed in the morning, which isn't always (I didn't go for an entire month and a half when I was in a bad swing) but I haven't worked in a year. I'm really hoping that I'll be able to go back soon because I hate having more student debt than necessary. I don't drive anymore so I take the bus, which stops right outside my apartment, and I sit with my feet up on an extra chair or crossed on my own and it's not too bad.

I'm going to take your advice about looking at old topics for tips and so on, and I'm going down to MediChair since it apparently has higher-rated compression stockings (the drug stores only go up to 20mmHg) and buy a pair, see if they help any.

[summer]

Hi Steph,

Welcome! Glad you found us. There are a lot of helpful members and lots of good info on this forum. Sounds like you have gotten the "run around" from docs for a while too. Most of us have been through that, and it is a good to get a diagnosis so you can finally begin proper treatment as well as gathering info to help you better understand what's making you feel this way.

I have been on Florinef for almost a year now. The information I have says it takes 1-2 weeks for it have it's full effect. For this reason, the dose should not be changed more often than that. I have found it works well for me, but it works only in combination with salt, so it is important to get enough. From what I gather on this board the amount needed seems to vary from person to person. My ANS doctor suggested that I add 2 gms daily to what I was already taking. I always used a lot of salt anyway, because I craved it.

I really don't know about B12 because I have not used it. My blood level is in the normal range.

To tell you the truth, I have not had great success with compression garments, but I believe many here have.

Glad to hear you are still able to attend class for the most part. Sounds like you have also found an exercise program that is working for you. That is great.

We're looking forward to "seeing" you around!

Summer

[flop]

Hi Steph,

welcome to the forum.

Salt - it can be difficult to work out how much you need to take. The easiest way is to add a bit of salt to your food and drinking water. That sounds horrid but actually is quite nice! I buy himalayan salt from a local healthfood store (it is a lovely pink colour) as it contains all the natural minerals rather than just sodium chloride in highly processed salt. I put a tiny sprinkle into each glass of water, not enough to make the water taste salty - it should feel softer in your mouth but not taste much different to plain water.

The best way to know if you are adding the right amount of salt is to ask your doctor to do a 24 hour urine sodium measurement. Don't do a "spot urine sodium" as you need to see the full 24 hour result. The lab should give a result that is urinary sodium mmols/24 hours.

If your result is <170 mmol/24hr then you will benefit from increasing your salt intake (research by Prof Hainsworth).

There isn't a "normal" level that applies specifically to people with POTS or OH but if your result is way above 200 mmol/24hr then you are probably overdoing the salt loading.

I get my 24 hour urine sodium checked about every 6 months to see that i am still on track.

Flop

[potsgirl]

Steph,

Welcome to the forum! You said you were diagnosed with dysautonomia, but your salt intake should be at a level appropriate for your particular condition. If you have POTS, you would need less salt than someone like me, who tends to have severe orthostatic hypotension (my BP is low, and when I stand it drops to about 70/50, pulse goes from 60 lying to 140 standing). My doctor at the Mayo Clinic told me to eat a lot of salt. So did my other cardiologist. But no one told me an amount. Finally, I asked my Mayo doc, who said I should try for 6-8 GRAMS of salt a day, along with lots of water. Someone with a higher BP range wouldn't need as much salt, so please check with your cardiologist to get the best answer. Just a simple phone call would do it. I take salt tablets (buffered) and eats a ton of salt, and I still don't get enough in.

Hope this helps a little. Everyone is different, so it's difficult to have a standing amount on salt intake. Be well, and know that the forum is always here for help and support!

Cheers,

Jana

[Broken_Shell]

Hi Steph,

I am not up to typing much right now, but wanted to say welcome to the forum. I am sorry what you are going through that has bought you here, but I hope that you find a lot of advice and support. Looking forward to seeing your questions, experiences, and posts.

~ Broken_Shell

[heathmcev]

Hi Steph,

I don't have much advice since I'm also a newbie and am very much where you are - waiting for an appointment! I've also been trying to figure out what to take and when, and doing loads of research to prep for my appointment (it's next monday - I've been waiting 5 months!). I know I have POTS and am patiently waiting to find out what type, etc. So I just wanted to send you a virtual hug and say welcome - I'm sure you'll find everyone on here as wonderful as I have. They know so much! Best of luck unravelling your puzzle. This is the best place to come if you're frustrated or just need to feel not so alone

stay well,

dizzyde

[Steph]

Thanks everyone for your words of encouragement and advice!

I don't know which 'kind' of dysautonomia I have, since my doctor didn't say, but I'll ask him next time I see him. (I suspect NCS based on what I've researched, but it's hard to know for sure.)

I bought a pair of knee-high compression stockings, and they do seem to help me a bit - although I want to find some toeless pairs, so I don't have to worry about slipping on the kitchen floor.

[Griffin]

Hi Steph

I am newly diagnosed too. I've been told to take 2400 mg sodium daily and to come back in three months, doing self monitoring of pulse and BP over that period. The reason given to me for the long gap in appointments was that it takes a long time for the salt to permeate all the cells in ones body. My consultant also said he expected it could take two years to get everything right enough for me to be active again. So, disappointing news, as I thought salt might be "magic" but good to have a diagnosis at last and a doctor who is on my case.