The Tilt Table Test

 The tilt table test is a diagnostic test that is used by doctors to better diagnose orthostatic intolerance and therefore POTS. I'm writing this post because I have seen on several Facebook groups that people are nervous when going to the test. I had mine and I can tell you, its easy peasy! Hopefully a detailed explanation will help. 

  First, the person prepping you will bring you into the room with a large metal table, it will have at least one strap on it, but maybe two. It looks scarier than it is. The doctor will have you lie down on a table with your feet on the bottom where there is a ledge. They will secure the straps across the front of you. These straps are good for you, they prevent you from falling or hurting yourself if you faint. They will hook you up to heart monitors that should look familiar, but they'll be the ones with sticky tabs on your skin, they don't hurt! They will put an iv in your arm for fluids, but won't start them yet. (I honestly think the iv prick is the worst part.) They'll take your BP and then you're ready to go. 

   Next, the actual test starts. They will slowly raise the head of the table until you are being held up by your feet on the ledge on the bottom. Remember the straps are there so you can't fall if you faint, so there is no reason to be scared. They will talk to you and monitor you for a set period of time (about 15 minutes). If you faint, they lie the table down and give you iv fluids until you wake. If you don't faint, they may give you nitroglycerine under your tongue by spray or a tablet (both have no flavor). They will have you stand for additional time after the nitro to see if you faint. Again, if you faint, you get fluids and lie down. If not, they lower the table and your test is negative. 

   My experience was pretty much as described. I started getting dizzy and woozy when standing but didn't faint. They sprayed the nitro in my mouth and I was out in a minute. If you have fainted before, it feels just like that. If you haven't fainted, it can feel strange. It is different for everyone. Some people get physical signs before they faint, like sweating, heart beat changes, and tunnel vision. Some people have no warning. But in the TTT, the fainting isn't nearly as bad because there are fluids in you immediately, you're not going to get hurt, and they lie you flat quickly. I understand being apprehensive about a test you have never had before, but its something that you can do. We're all strong and brave POTSies! 

Zombies! Run!

Update: 

Nothing like fainting down the stairs to wake you up. 

Still no service dog, the ones that were possibilities for this class weren't right for me. One was "unmotivated" and placed as a home companion and the other "alerts by peeing on things and people." Needless to say, not a good dog for a girl who faints as often as I do. He has been placed with a friend of mine from CPL who doesn't need alerts. Still waiting for the right dog to come along, can't wait! 

I returned to Dr. Grubb last month, this time by train, which was quite an adventure. He is still the wizard! We are going to try Epogen (if my insurance ever approves it). For those of you who don't know, Epogen is a drug that you inject weekly and it increases the red blood cells in your blood. Since I increase my blood volume so much with water, salt, and florinef, the thought is that my blood might be too "thin" and Epogen might help. Dr. Grubb published his findings with the drug in the American Journal of Therapeutics (see Here).  Its not a treatment for everyone, its risky and reserved for those with more serious cases of POTS, but we're at that point. I'll let you guys know how that goes once I try it. More articles on the subject are available Here.

My health has continued to decline, I am still fainting 3-6 times a day, but now I am doing a lot less in that day. Fatigue has become a serious problem. For those of you who don't have POTS, EDS, or CFS, fatigue is not just being tired, it can be truly debilitating. Imagine you don't sleep one night, then run a mud run marathon whilst being chased by zombies, host a children's birthday party, don't eat for a day, and then jump rope for an hour. While this sounds silly, the fatigue really is irrational as well. I was awake today for two hours when I needed a nap, in that time I got dressed, went downstairs, heated up leftovers, ate, and sat with my dad to chat. In normal people, that wouldn't leave them brain foggy and tired. I have yet to find anything other than naps and keeping up with hydration to help with the fatigue. 

On the plus side, my wedding planning is going along smoothly. I still haven't figured out how POTS is going to impact my big day, but I have several months left before I know what condition I will be then. I'm crossing my fingers that I will be able to try the Epogen and that it will have a positive impact on my fainting and fatigue. Right now I am trying to keep an open mindset about the possibility of needing a wheelchair on my wedding day and how that might change my day. No matter what happens, I will be marrying my best friend and surrounded by ones I love, all will be fine.

Living on a prayer...

We're going to see the Wizard!

 I haven't written for a while, life has gotten difficult and to be honest, I just forgot. I went to see Dr. Grubb in Toledo. If you have POTS and you are even considering it, go. It is worth the trip, the expenses to stay nearby, and he is truly amazing. At my appointment he explained to be the cause of my particular case of POTS is actually something different, a connective tissue disease called Ehlers-Danlos Syndrome or EDS. It is a connective tissue disease that has several types, my type is hyper mobility. With hyper mobile joints, tendons, ligaments, and everything else, it causes a whole lot of symptoms that were previously unexplained. I will leave you to research that on your own, but if you have adult onset POTS and EDS, your chances are a lot less likely that you will ever get completely better. My research suggested this while i was reading medical journals recently, and my doctor confirmed my fears, I probably will never get better. I had that idea in the back of my mind, but I kept hoping that one day I would outgrow it or spontaneously recover. Wouldn't that be a great day. My doctor told me that she thinks I need to take some time to grieve the life I expected and the life I had and work towards acceptance of my POTS and EDS as my new normal. I'm not ready to do that. To me thats giving up.

New Pacemaker
New Pacemaker scar...

 While I understand that this may never get better, I still have hopes that if I get a service dog, I won't be stuck in the condition I'm in right now. I won't be fainting all the time because the dog will alert me so I can lie down. I won't need to wear a helmet all the time, because I won't be fainting. I won't be getting constant concussions and dealing with the injuries from fainting, because I won't be fainting. I won't require a wheelchair as much, because the dog will help with my fatigue and will prevent me from fainting. I guess I have a lot of eggs in this one basket, but its the only thing we have left to try.
 My new pacemaker is pacing 60% of the time (I'm in bed the rest so it doesn't need to pace). We had hopes after my surgery that this new Evia Pacemaker by Biotronik would work, but I'm still fainting. We've tried all the drugs that are used for POTS. We have tried the high salt diet, the high liquids, the gatorade, the weight gain, all to prevent me from fainting and all its done is make me gain weight. We're at the end of the line for options as far as I know. I should find out soon if I will get a dog for the next class, crossing our fingers and saying lots of prayers. I'm not ready to grieve the life I used to have. I'm ready to get a partner who will help me live a life I'll love.

We're off to see the wizard!

Tomorrow is a huge day for me. I have an appointment with the famous Dr. Grubb at the University of Toledo Medical Center. I feel like I've been waiting forever for this, even though it has only been about 13 months. You'd think that with all that time I'd have worked out my nerves, but I haven't. I feel like I've put so many eggs in this basket and what if he doesn't have anything new for me to try or new information? What if he says this is it, this is as good as I'm ever going to feel? What if this is it, we are at the end of our options? I think of those possibilities and try to remind myself that there are possible good outcomes as well. What if he says he has a treatment for me to try and it works? What if he can tell me information about POTS that no one could before? What if he tells me things will get better? What if they do? I guess in the end, worrying that things won't go well won't get me any further than hoping for a good outcome. Either way I could get hurt or not, but only one will make me feel bad now. Tonight I will resolve to keep a positive mindset and hope for the best. So tomorrow we see the wizard, wish me luck!

Surprise!

Hi friends. I haven't written for a while for various reasons, but mostly because my health took a turn and I felt for a while like it wasn't POTS related so I didn't want to add it to the blog and possibly confuse people or just complicate things in general. Long story short, I had my heart attack in March and, even though I had a clean cath (they didn't see heart damage), it somehow damaged my hearts nerves. I started in July having more fainting with a different pattern than with my POTS. I would have NO warning and just drop. The loop recorder that we implanted caught the problem, a heart rhythm problem separate from POTS. (Like I needed two of them?) I found out that I needed a pacemaker and had one implanted within a week. Once again, for about a month after surgery I feel a lot better, but we think it was just my nervous system responding to the stress of surgery, it wore off though. The pacemaker is catching the heart rhythm problems from when I have my MI, but not the BP type faints from my POTS, so I still faint, just not as often.
So thats where I am now. I had some ups and downs with my POTS since then, even doing so well that I didn't wear my helmet for about a month, but it came back again after Thanksgiving. Since Thanksgiving I've been really struggling. Since then I've averaged about two or three faints a day, with 12 being my worst. Even with wearing the helmet again, it still hurts. I'm starting to feel damage being done to my knees, and bruises are becoming a constant reminder to me that this is all real. Sometimes it doesn't seem real, it seems like a bad dream or a cruel joke someone is playing on me. It makes me mad and frustrated, how could it not? But I keep reminding myself it could be worse. I keep reminding myself that we are working on getting me back to my life, I want nothing more than to be better so I can be myself again, not this sick woman who is stuck in this body that doesn't work.
I don't want POTS to hold me back from things, but I literally cannot do some things now. I really hate relying on other people, but at the same time, I don't have another choice. I can't take a shower without someone nearby, because I faint in the shower and someone has to be there to help me. That happened last night and I was unconscious for minutes because my Mom couldn't get me flat so my head was below my heart from the angle I was at. Thats scary, for me and my mom, I've started to space my showers out more, use a shower chair, use a hose shower, and only take them when my bp is high enough. Even with those precautions though, I faint almost every time I shower.

We finally got a wheelchair, which is very helpful when I'm out in public, but its too heavy for me or my mom to get in and out of the car, much less into the house. We're talking about getting a rollator or transport wheelchair for me to sit on in the house to get around, but we'll see. I am also still in the process of getting a service dog. I've been on the list for a while, but I need a poodle for my dad's allergies and it needs to be one that can cardiac alert, so it'll be a while before I get one. I have met several POTSies who have service dogs though and every one of them recommends it. It may be a big responsibility and limiting in some ways, it can give you your independence back and in my opinion, there is nothing that is more important than that for a POTS patient.
So I guess I'm going to leave you with this, a short update. I'll try to start writing more, I don't know if anyone is reading anymore, but if you are, I hope you're well.

In other news:

I got engaged!