tinkerbella

I know I have them all the time from bumping into things and my white count is always low. Bruising easily anemia, been this way my whole life. My doc is

going to run another batch of tests next month as it continues to get worse.

I feel like I'm dead, dead, dead and I can't get up. This goes on for hours. When I finally can get a BP it is so low and heart rate so

high, temp so low that I'm always freezing cold. I'm starving, but eat and feel so sick once I eat. Nothing stays in me. Dizzy, in pain,

shaky and it stinks because I may have to fight like heck through chest pain to get to the bathroom. That is why I thought it was named POTS.The room that I live in....when I not in bed.

I had a terrible reaction also...they thought they were losing me. I just remember them saying, Stay with us and don't go to sleep. I was

told to not to / be cautious of have any radioactive dyes. They always have a a long talk before they give me anything now, and premedicate me before if needed.

In my case,I didn't go into all the details, but I have certain ranges preset for my medical conditions @ this stage of my illness. Let's just say I'm in

the delicate flower stage if you get the idea. We are all different, there are many things besides a stroke my doctors are looking for when they send me

in. Everyone takes it very seriously, and sometimes it is minutes that saves a life when you second guess what is going on. I'll let anyone have a good

laugh, but I've only seen compassion, caring doctors and nurses who say I'm just so young and would I like to be resuscitated should the need arise.

Wish my Dad went in time...maybe he'd still be here today... Listen to your docs, understand your current medical situation and know your family history

too.

Have a good day everyone. : )The sun is out again, let's all dance and don't forget the eclipse....those of you who are lucky enough to view it. ; )

Kayla

Good Morning and Hope today you will start feeling much better and get out of there soon. My doc told me heart rates drop as low as in the 40's when we sleep or at night and for me not to be concerned. We are all so different....yet the same. Having that monitor on all the time is interesting to watch also. So all of our doc, will have personalized ranges that they feel are safe for each and every one of us. We each have different layers to our POTS or

conditions that make docs react at different BP levels and HR. L@@ks like you are in good hands right now. I hope mom is holding up also. I understand both ends also. Spent a lot of years in the hospital with my little guy and it broke my heart and still does to this day. I'll pray again today for you and

send more positive energy to you.

>>>>>-----------get well soon---------------positive energy----------->>>>>>

BellaMia xxxx's

Feel better Kayla, my thoughts and prayers are with you. Hope you feel better soon. Don't let them stress you out.

Oh sweet Kayla,

Hang in there...mom is just upset to see you sick... I too have been in there several times when they don't know what is wrong with me... Usually they have

me on clear liquids till the symptoms stop or they figure out what is at the bottom of them. Every time the flu come around I'm put in. last year, they

didn't know what was wrong with me for 5 days and then came in all masked up. I had a strain of the flu that wasn't in the vaccine that year. Too late to

treat, as they waited to long. If they are not a pots friendly hospital I always have them watch the changes video on youtube to start, contact my PC/cardo

Neuro any specialist that work with you. Remember, you will get better....

Right now where I live everyone is getting sick with a virus stomach bug. Pots and bugs don't mix very well. So, relax, rest and keep us all posted. I just said a prayer for you sweet one ~

((((((((((((((LOT'S OF HUGS))))))))))))))))))))

WE ARE ALL HERE FOR YOU ~ <3 BellaMia

I have spikes also that will land me in the hospital. Last bad spike we decided to go from 3 liters to 2 and slow it down to a last over 24 hours. Now I

have technical assistance something new with POTS patients to make sure I don't go into CHS. It's a bedside computer that does all your vital signs every

day.Then you send them off to be read and flagged for the doctor when something is out of range. Also the nurse behind the technical assistance calls for

details when your nurse can't be there for all the details. When they are worried an ambulance has been sent by the dr.

I like accessing my port once a day now, less complicated for me. My urine usually is colored from my vitamins. Would love to know more people on

hydration. Hope all is well with you goodnuff77 ... Have a great day all ~ The sun is finally out where I am : ) makes me feel a bit better.

Thanks everyone : )

I've been looking around trying to figure out the same thing, along with thinking protein powder that I add in with my

drinks/shakes all might give me more energy. Something has to work. : ) Thanks for any tips friends.

I had it there also, but I couldn't tolerate the sweat test. I thought my finger was going to burn off.

Medication Ranges Patient's Dose

B1 50-200 mg qd 200 mg

b2 50-600 mg qd 400 mg

b6 50-500 mg qd 400 mg

b12 50-100 ug qd 100 microg

vit c 55 mg /kg qd(100-2000mg qd) 1000mg

vit e 200-1200 IU qd 800 IU

CANITOR(l-CARNITINE)50-100 mg/kg qd (this he pulled out,as insurance never wants too pay as it's very expensive)

alpha-lipoicacid 10-125 mg/kg qd 1,000 mg

CQ10 (ubiquninone) 5-20 mg/kg qd 1,500 mg

N- acetyl cysteine(NAC)12-25 mg/kg qd 1,500 mg

folinic acicd 01.5mg/kg qd 100 mg

I think I copied this right :/

They are all compounded into caps so you get an accurate dose. I went to Walmart today to see if they could help me.

They never saw this MITO COCKTAIL ever before. They said, although they look like a Super Walmart, they are not one. The

nearest one is far away.

My insurance will not cover vitamins or medical foods. The doctor showed me the file with all the attempts that have been

made. The sectary informed me of the same thing when I checked out. I can't do this on my own. I will somehow figure this all out. I will continue to search online. Thanks for any tips on where to buy any vitamins. I know I can't afford this.

Maybe coq10 with what I already take might help. : ) I'm overwhelmed thinking right now.... time to hand all my trouble

over to God and rest.

Hugs to all ...

So sorry this happened....Hypocalcemia can also cause the cramping, but us with dysautonomia, know all about cramping. I really believe when my heart aches it is cramping of the heart muscle. I have had cramping so badly in my bowel, I am doubled over in pain, and I have had the cramps in my feet and calves, too, and even my pectoral muscles, putting on my seat belt. Keeping well hydrated with my electrolytes seems to help this problem. I probably shouldn't say this, but it hasn't been as bad lately, and I really don't understand why...unless my increase in Vitamin D or CoQ10 could have helped with this. I know that deficiency in Vitamin D (which I had), can cause muscle and bone aching, and the other is for proper cell function, which could include electrolyte usage within the cells. Just thinking out loud, or should I say while I type?!

Kim,

Just wondering how much CoQ10 do you take and D?

Cramping is a biggie with Mito and I posted about my Mito Cocktail is 900 dollars, but insurance

won't pay. I was told to go to Walmart, and I did today no luck.... I write the post in the right place so I'm curious to see what you say. Running out of energy to even write what I really want to

say these days.

BellaMia

Kayla was wondering how long the power ports last...Mine has been x-rayed to check that it hadn't become broken from line.

If you search the internet for bard power port, you will get their questions and answers.

Here is a forum where they are talking about use and lifespan of ports.There's lots of information about the port on line.

https://www.inspire.com/groups/advanced-breast-cancer/discussion/should-i-get-a-port-central-venous-access/

Just search around and if you are are needing one read up and become educated about them.

I learned from the nurses in the IV infusion clinic before hand. I didn't know that young people can have them put in

other places other than there chest. I would have liked that option, as people stare all the time and being so hot I'm not

going to cover up. My dressings want to sweat off before the weekly dressing change.

Hope all is well.

Are your's compounded by a pharmacy?

How many do you take a day?

do you notice a big difference?

Thanks for your reply. I think I needed to see your quote,"Jesus take the wheel".

I have been denied insurance the Mito Cocktail. My neuro has tried over and over to appeal the

insurance company. I have tried to talk to them, but they won't talk to me. I can't afford to pay my utility bills let alone 900 dollars a month for the Mito Cocktail.

Has anyone figured out another way to do it?

someone suggested me taking several high potency regular vitamins a day without Iron. (allergic to

Iron) as we tend to pee out what we don't need.

The doctor said one patient found that Walmart gets the largest buys on vitamins and sells them the cheapest. I could go in there and ask them to make a 30 day supply of the cocktail and try it. It would be like taking 80 pills a day. Usually I would go and get it all compounded @ a special pharmacy because they can guarantee what is exactally in the amount of the vitamin. whereas other vitamins

you really don't know what you are getting. Because vitamins are not regulated there is a wide

variation of what you are really getting as to what the label states.

I hope this makes sense...I'm over tired today. : )

I have to be premedicated for for contrast Dyes, as I had the really bad reaction with the Iodine.

Did you happen to have chest pain while having the first test have to be taken down?

Have been wondering where you have been lately. Maybe we have been like ships passing

in the night. lol Hope all is well Rich.

YOU ARE very welcome ~

Here's one link about the iron:http://www.peoplespharmacy.com/2010/04/14/leg-cramps-signaled-iron-deficiency/

night, night ~

Hope every Mom is able to have a wonderful day with their families tomorrow.

I'm looking forward to time with mine. They are the world to me.

Lost my Mom 2 years ago just before mother's day and I can't believe she has

been gone that long already.

So, if you have a Mom remember her, life is too short, tell her you love her.

That is all she really wants anyway. That's all what we all want L O V E ~

H a p p y M o t h e r ' s D a y ~

I'm sorry that happened to you also. For those cramps try tonic water and sip it through out the day. If you're having them bad at night deep to the bone. They told me after my sleep study It's most likely my low iron and they are trying to figure out how to safely infuse me with some.

I'm buying a round of hugs tonight for all ~

She lifted my spirits ; ) thanks for posting~

Hi Elegiamore ~

I also have a friend who almost died from her port..that is why I fought tooth and nail and used up all my veins for 4 1/2 years till it was a must.

Is your port a bard power port?

Another thing is my insurance won't pay for the BARD needle sets. When I end up in the ER to unclog my port they use the bard needle set. When I questioned why I don't get this set, I got the insurance response. I was told why would they use anything else at the ER. So, I noticed that the bard needle infusion set was tiny compared to the Churchill medical systems Lifeguard Non-Coloring Safety Infusion Set 10 " Microbore Non DEHP Tubing Priming Volume approx. 0.3 ml.

It's a needle size 22 ga X 3/4". For a while they were using a needle that was the wrong size for me in the Churchill. they were using one that was a size too big and too long.

I agree it's all in the experience of the nurse. I sure should hate to be the one sticking the needing in someone's chest one a week.

I thought these brochures would be helpful for anyone who might be considering a port.

.http://www.bardacces...patientinfo.pdf

http://www.bardacces...t_Guide_web.pdf

The other day when I had a VQ scan the said I don't want to use your port because the material they inject likes to stick to the tubing, so they asked could they use my arm. You bet I said YES!

All in all I have the best team of iv nurses, doctors and support systems in place ~ But, I'm so darn tired from being sick and tired ~

Anyway, when in doubt go and get checked out. I was just @ the ER.

Best of Luck ~

Hugs,

BellaMia ~

Hey cool ~~~ Can't wait to see everyone's ~ I had a setback and spent the day in the ER where everyone kept saying what does that Pots stand for again ~ lol I have a lot of appointments tomorrow to recheck my heart. I had an incomplete ecg, so I'll check back tomorrow with everyone and write some interesting stuff ~ Night night all ~

round of hugs on me ~

Bellamia ~

I also like for 15 cent more each bracelet it would be made in the USA ~ I'm for more PRODUCTS MADE IN THE USA ~