Hi there!
I am new to this forum and have read many topics! I have learned a lot!! Thanks for all the info!

Let's see, I am 19, and I have POTS/NCS, I have no health insurance, therefore, no doc! I am having trouble keeping hydrated! I drink and salt often, but it doesn't seem enough. I had always wondered if there was such thing as having IV at home, (since when I had a doc, I was in there practically every week dehydrated...) and now, due to the "central line for daily IV therapy" thread, I know there is!

But I am just wondering if you think something like that would help me, or if I should just try to stick with the fluid/salt...

I am in the process of getting a doc, but will have to pay 20% of all fees... have no idea how that will happen, I have no job or money. Not able to receive medicaid b/c I live with my parents...supposedly they make "too much $"...but obviously not enough to pay for doc...

So I fear this new doc will have no idea of dysautonomia, which wouldn't suprise me! ...but, truly I need a specialist!

I am not completely bedridden, but am constantly dizzy when upright and all that "presyncopal stuff" kicks in many times through out the day. I am fairly new to this, just dx'ed in the fall, but have had symptoms my whole life! I have low bp and major tachycardia! plus all that nausea temp changes, etc...

I know by reading some of your posts that I am not as severe as most of you, but just would like to learn more and talk to people who understand and might have advice.

So here's a little about my med history... I have tried effexor, florinef, mestinon, adderall, (that's all i can think of at the moment for dys) and none seemed to help. Now am on wellbutrin for depression. My psych wants me to see an endo, but honestly with no money have no clue how this is possible... also I know I should see a cardio, and/or neurologist, but same situation! so, I am basically in a hole!

Unsympathetic b/f says I need to get a job to have money to pay, or have health benefits, well DUH I know that, if I could find a job that I could actually do, don't you think I would jump right on that!? I have been trying very much to get a job that doesn't involve standing. AND I am sure you all know those barely exist...or are not feasable... He just doesn't truly understand what I have and am going through, but I cannot blame him, nor my parents. If you haven't been through it, you have NO IDEA!

I am glad to have found such a place with people familiar with dysautonomia! It is a blessing! ...I thought I was alone!

My apologies for my thoughts are scattered and lengthy, but I figured it best to spit them out anyhow...

Thank you for any advice or opinions, etc...

Danielle

Hi Danielle,

I'm in Australia so can't give you any practical advice on the questions you asked but other members will. I just wanted to welcome you to the board.

You don't need to apologize for 'scattered thoughts' etc. They're a 'given' on this forum.

You are not alone. Not by a long way.

Danielle---
Since you're in a bit of a rut due to lack of insurance here's some stuff to help you get by for now........

Make sure ALL your electrolytes are good, including Potassium, Magnesium, Calcium, Chloride, Salt

Too much salt loading can lead to Potassium deficiency which usually makes us all quite ill. Too little Magnesium can also lead to a Potassium deficiency.

I would supplement with Potassium Gluconate. Also note that tangerines have more potassium than bananas.

Replace your table salt with Sea Salt.

Constantly drink SMART WATER and "RECHARGE" from Knudsen Juices (you can find them at Whole Foods or online) only get grape or lemon flavor because the other flavors have stimulants like caffeinated tea or too much vitamin A for us to handle all at once.

If you cannot get Recharge get Gatorade. Recharge is simply the natural fruit juice sweetened version of Gatorade. The amount of sugar in Gatorade can lead to hypoglycemia crashes later and also too much yeast/ Candida in your body (which if out of control can lead to sores in your mouth and getting frequent colds). You can also take Capryl (Caprylic Acid) to lower yeast too.

Make sure to get a few minutes sunlight each day. Vitamin D3 is created when ultraviolet light hits your skin (withOUT sunscreen of course). You can supplement too, however, I find it's always better just getting a little sunlight.

Get a blood pressure monitor from Rite Aid or CVS so you can keep track of your heart rate and blood pressure. That way you'll know if something is starting to go wrong sometimes before you realize it.

Make sure to constantly snack, no big meals. You may very well get reactive hypoglycemia (which will not show up on a usual 12 hour fasting glucose blood test). This will cause presyncope attacks. (see article "Insulin Sensitivity in Young Women with Vasovagal Syncope") Snacking during the day should reduce this. Lessen your amount of straight sugar. Try snacks like straight up sliced avocado with sea salt.

Amino Acid Glutamine should get rid of bloating and your digestive tract abruptly stopping on you suddenly.

I first passed out when I was 17 while getting my blood drawn and then I started convulsing. I had tons of pre-syncope and didn't full on pass out again until age 22. If I had to do over again I would not take beta blockers. They reduced my day to day presyncope but increased the number of my full on fainting episodes. Now I get awful withdrawal sideffects when i try to ween off of them.

I started wellbutrin when I was 19 for anxiety. I'm now 27. Still take it.

Take care,
Gen

P.S. When you get the money see an endo, skip the neuro and cardio. Usually more times than not you'll be stuck with a dud. May want to see a cardio just to check the tachycardia and get a echocardiogram.

Frankly, your psychiatrist can order you blood work if he's willing to let you recommend some tests...... since your budget is tight I'd say get these tested for now:

Homocysteine
B6
B12
and Glutamate levels if you can

P.P.S. If you're in college sometimes you can get better insurance benefits. I did.

Thank you both for your support and advice! Unfortunately, Gen, I had to drop out of college in december due to my health, and money problems... I could not function while at school, all I could ever do was sleep, and still now a days.

Hi Danielle,

I really don't know what to tell you about ins., etc, but if your state has an insurance program you might want to check that out.

I'm surprised that you can't get Medicaid (although I really know nothing about it), but you are 19 and I should think they at least would cover medical for you.

Sorry, I'm not any help.

I never found salt (def. use sea salt as recommended) to help me retain fluids. I was even up to 6 g. at one time. When I stopped it (was using it as part of my Lyme treatment) my cardio wanted me to get back on at least 1g. I would, but right now the nausea I am dealing with makes the thought of salt unsettling, to say the least. But we all need salt (again, sea salt and make sure it doesn't have anything added, like anti-caking ingred.), even healthy individuals need it.

I'm glad you found the group, though, so you don't feel so all alone.

hugs

Danielle---
Sorry to hear that! I wish I could be of more help with the insurance thing.


I wanted to add one more helpful small thing though........
When you are standing, let's say standing in line waiting at the bank or something, make sure to tightly cross your legs while standing. This should decrease the blood pooling down to your legs and feet.