February 19, 2014
I woke up feeling fine on September 29, 2013. I sat on the couch with my husband and had a cup of coffee, I got up to get in the shower and I was really dizzy. That dizziness as I write this on February 19, 2014 has not gone away yet.  I went to so many doctors, the ENT in case it was my inner ears, the neurologist in case it was my brain, a couple of visits to the ER, even the cardiologist, because I didn't know who else to go to. Every doctor told me it was displaced crystals in my inner ears but none of the exercises worked to alleviate the dizziness. We have tried every kind of non dizzy prescription medicine and none of them have helped. The only relief I got was when I was in a reclined position, so most of the past 5 months have been spent propped up on pillows on my living room couch. I went through every test the doctors could come up with, some were really awful like the one where they put black goggles over my eyes and poured alternately very hot water then very cold water into tubes in my ears. I now know what if feels like to be on a rotisserie if it were going
extremely fast.  Finally, one of the tests picked up that my heart rate went ridiculously high when I stood up. The nuerologist called and said you have POTS, Postural Orthostatic Tachycardia Syndrome.  So I called my cardiologist who told me, impossible, POTS patients are only dizzy when
they stand up, you are dizzy when you stand up or sit up straight, it can't be POTS. As most of you know, you can't take no from a doctor if you believe you are right. So I went online and found some great information and then I found a blog by POTSgrrl and I realized that I had all the symptoms, I also discovered there was a test called a tilt table test that would tell you one way or the other if you have POTS. So I called my cardiologist and demanded a tilt table test. So I had to see a second cardiologist who specialized in POTS. I finally had the tilt table test. They strap you to a table and
hook you up for your heart rate and blood pressure, then they tilt the table so that you are standing up for 20 minutes. Then they inject you with adrenaline and you stand another 20 minutes. This was a tough test, I was so dizzy and I felt like I was going to fall, but I was determined to do any test that
would help me get rid of the POTS. So the test was done and I was told, you have POTS.  There is no cure for POTS, there are over 1 million people in the world who suffer from POTS and no one has the same symptoms. So they started me on fluorinef, told me to start doing some light leg exercises,
increase my salt intake and my water intake and to wear compression stockings up to my thigh to help the blood vessels push the blood up my body.
So what is POTS, there is not as much research out there as I would like and not all of it is reliable, but basically POTS is a syndrome that effects your autonomic nervous system. When you go from a lying to sitting or standing position, your blood vessels do not pump your blood properly into your head and because your blood vessels aren't working properly, your heart starts pumping even faster to get that blood to your head. Gravity doesn't help so the longer you are standing or in my case sitting upright, the blood isn't getting to your brain. My blog is an attempt to help any of you who are experiencing the same dizziness I am and hopefully when I find something that works, it will help you too. I also want to add that I have quite a few other medical ailments, I seem to always get diagnosed with rare disorders, sometimes doctors have never heard of what I have. I won't bore you with all the details but my medical history is two pages. So I knew with my history, POTS would
be the answer. I also found out that many of my medical conditions could be from POTS, irritable bowel syndrome, restless leg syndrome maybe even the reflux. I am also a HUGE klutz and have
broken a lot of bones.

So I am determined to beat this thing, most people are diagnosed between the ages of 15-50, I am 51 and from what I read, the older you are when diagnosed, the less chance of beating POTS. So the first thing I did was look for the compression stockings. There are ALL kinds of compression stockings.
POTS patients generally need a compression of 20-30 mmHg. There are the kinds with an open toe and a closed toe. So I ordered a pair of each, closed toe and open toe. What I didn't realize was that I ordered garter style, so when they came, I put them on but they kept rolling down, I did more research, realized what I did wrong and ordered a garter belt and a pair of silicone thigh high stockings which supposedly will keep themselves up. There is also a HUGE selection of price ranges, they start at $20 a pair and go to $115 a pair. They have a life span of 6 months. They can only be worn once and must be washed before you can wear them again, so you need at least 3 or 4 days worth of stockings. I am still waiting for the garter and silicone and will update you when I get them.

I have always drank a gallon of water a day so I didn't need to increase my water. I do mix it with either watermelon juice or gatorade. I also have a heavy hand with salt so am waiting to see if I
actually need to take salt tablets.

The doctor gave me a prescription for fluorinef, so my husband dropped it off at CVS and I looked it up on the internet, I found out that it was a steriod and I have osteopenia, on the cusp of osteoporosis, so I can not take the fluorinef long term. I took it for a couple of weeks and it did not help the dizziness at all. This week, I noticed my shortness of breath was getting worse and when I looked it up, that was a side effect of the drug but it is also a symptom of POTS. So I called the Cardiologist and left a message. They didn't call back, so I stopped taking it. The shortness of breath has gotten worse along with the chest pains, even laying on the couch and just talking, my breathing becomes labored, also if I get up and walk around, try to do some light housekeeping the breathing becomes worse. So a few days later I called the Cardiologist again and told them what was going on. They told me that I needed to talk to my regular cardiologist for a stress test and that I had to determine if the shortness of breath and chest pain was bad enough to go to the ER.

So right now, my life consists of mostly laying on the couch, propped up by pillows. I did purchase a reclining wheelchair so that now when I go to doctor appts I can at least recline in the chair and not be so dizzy. I do get out of the house once every 2 to 3 weeks to go the drug store or supermarket, I either take the wheelchair or I hold onto the shopping cart and try to walk the store but the whole time my husband has to be next to me as I lean to either side as I walk because my body just cannot be upright. If I stop walking and have nothing to hold onto, I face plant wherever I am standing. So far, I have been lucky that the times I have fallen, something has been close enough to soften the fall.
This has been really rough because after I got dizzy, my younger sister was diagnosed with 4th stage brain and lung cancer and then my mom was diagnosed with ovarian and uterine cancer. My whole family lives in Florida and I live in NY. So my husband took my down to Florida to see my mom
and sister and attend my niece's wedding. Travel was difficult, the seats on a plane do not recline enough so I was dizzy the whole time. I would like to go back to Florida and see my family again
but I cannot travel alone and my husband can't get off of work so the stress of worrying about
my family, complicates the POTS even more because stress can make the symptoms worse.

So that is pretty much where I am at today. I am hoping to get back to my normal life, I refuse to accept that this will be my life. I am very involved with my church and in five months have only
been able to attend once. I love to be out, shopping, meeting with friends, PTA meetings and of course church, but the wheelchair is over 50 pounds so taking it anywhere is a real pain in the butt and of course I can't drive so I have to rely on begging people for rides and I really hate to inconvience anyone. I can't even sit at my dinner table and so I have to sit in my reclined wheelchair which makes eating difficult. I know this is coming off really whiny but I am normally a very optimistic and happy person so I hope to find something that will at least take away the dizziness, I can live with all the other symptoms but the dizziness sucks. I also hope that I can help others who
are going through the same thing I am. That is all for my first post, thanks for reading.

February 20, 2014
So today my garter belt came, so I pulled on the stockings and attached them to the garter, apparently I should have bought a smaller size stockings because they continue to scrunch down and I had to keep pulling them up. Tomorrow I will measure myself and check the size recommended on the internet. I will also try the pair of thigh high stockings that are held up with silicone so stay up by themselves. More tommorrow.

February 21, 2014
So I tried the silicone thigh highs so I didn't need the garter. What a difference, they are so much more comfortable and for some reason fit better, going to order a few more pairs today. I got
a message today from an old friend, she has been dizzy for two months, so I gave her some suggestions to try. You have to be your own advocate. So I thought what good is this blog if
I don't help you figure out how to rule things out. So, the first thing I suggest if you are dizzy is
to rule out the Epley maneuver, that is the most common cause of dizziness according to my drs.
I found this video on you tube that explains how to do the Epley maneuver, http://www.youtube.com/watch?v=QikUTAmeE0M.  I suggest writing a capital letter B on small pieces of paper and putting them on the walls of your bedroom where you will be focusing when doing the maneuver, I did it in my bedroom and dangled the end of my head off the end of the bed.
Some drs say to do it once and wait a few days, other say to try it twice a day for a few days. I would try one way and if it doesn't help, then try the other way. Also, the dizziness is different for crystals in your ears vs POTS. If the room is spinning around you, that is vertigo and it could be crystals.
With POTS, the room isn't spinning, you are spinning.  With POTS it feels like you are on a really really rocky boat  If the Epley maneuver doesn't work, then you need to rule out POTS.  You will need some kind of way to monitor your pulse rate and blood pressure.  Lay down for an hour and just relax, then take your blood pressure and heart rate. Then thand up straight and do not move, just stand as still as possible.  Then take your blood pressure and pulse rate at 1 minute, 3 minutes,  5 minutes and 10 minutes.  If your heart rate goes up 30 points from laying down to standing, you need to go to a doctor who specializes in POTS to confirm. As I said, there is no cure because not everyone has the same symptoms, but having a diagnosis is half the battle.
I also forgot to mention that my dr has me doing light exercise. He suggested leg lifts 3 x a week. I do leg lifts every day while laying on the couch, I also do a form of sit up, laying down on the couch, tighten your buttocks and that will tighten the muscles in your stomach. This will not only strengthen your core but will also keep your legs from getting blood clots if you are like me an stuck on the couch. Also, if you are to the point like me, again stuck on the couch, you aren't going to work off
any of the food you are eating, so it helps to stop any large weight gain hopefully.
Well, that is it for today.
March 1, so today we went to Target. I skipped the wheelchair and used the shopping cart and Rich to keep from falling. I have been wearing the compression socks for days so I was hoping to see a difference, unfortunately, I was just as dizzy as always and walking through Target was difficult. I was so glad to get into the car and in the reclined car seat.
March 4  So, I went to see my cardiologist today. He is the only doctor on LI who deals with POTS patients. He wasn't very positive.  He said that my POTS is an extreme case, he verified that it is a rare condition and only 1/2 million people in the world are diagnosed with it. He is a great dr but he admitted that he didn't know much about the syndrome and I said well that really sucks since you are considered the go to guy for POTS on LI.  He gave us a 5 page article on POTS written by a dr in Ohio and he suggested I go to Ohio to see this dr.  The problem for me was the article was written 5 years ago and alot can change in 5 years. So I am going to start researching to see if I can find a new dr who has more POTS knowledge and experience. In the meantime, the doctor started me on Midodrine, it raises blood pressure, decreases heart rate and help you to retain your urine. So I am hoping this works.  The past two days have been rough, I feel like I have the flu, my legs and arms feel like they weigh hundreds of pounds, I am freezing no matter how many blankets I have on me.
Well, not feeling good so that is it for today.
3/5 Still freezing and when I looked up side effects of Midodrine, it says chills and goosebumps. So I assume this freezing is from the Midodrine. I think it will all come down to what is the least harm. If this medicine helps the dizziness, then I will deal with being cold. I also was finally able to get the salt tablets today, I had to get them by prescription. They are pretty gross, it tastes like someone dumped a salt shaker on my tongue, but the taste goes away as soon as you wash it down with water, so it is doable. So far, still dizzy but I am hopeful.