Tuesday, November 19, 2013

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! 

Sunday, October 20, 2013

Zombies! Run!

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.

Tuesday, August 6, 2013

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.

Sunday, February 24, 2013

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!

Thursday, January 24, 2013


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!

Friday, July 27, 2012

Tuesday, July 24, 2012

Life after the loop...

Hey there guys and gals,
I wanted to give you a quick update. My loop recorder surgery went well, actually it was better than expected. My amazing cardiologist and plastic surgeon team were able to put the implant under my breast tissue instead of on my upper chest. That means that the scar won't show (even in a bikini) and the device won't show! I am very excited about that fact. The surgery went well, as expected I was in a lot of pain after (apparently it hurts more where they put mind because the nerves there are more sensitive) but the pain pills they gave me helped with that. I still have some pain when I move around and with tight clothes, but I'm told that will go away over time (this thing is only in for a maximum of 3 years anyway). Overall I'm really happy I got the loop. We have some early results which suggest we may know what is going on, but I won't know more until I get more recordings. Luckily I have been having an easier time since surgery, my doctor thinks I may be in a mild remission due to the stress of surgery. While I've been very tired and sleeping a lot, I haven't been passing out more than once a day since surgery! I'm very optimistic about that. It helps me remember that I could get better one day and have all of this be a memory. Besides the medical stuff, my life is going great! I have been catching up with old friends, started dating an amazing guy, and I've been getting out of the house more. I've been able to help more with chores in the house, with the dogs, and in the garden too! I'm looking into starting an Etsy account to make some extra money with crafts, so we'll see how that goes. I'm also looking forward to going to visit family around Halloween in New Orleans. Overall even with the POTS, life is going well. I guess its all a matter of adapting after all.
Be well,

There's a case for that...

Recently at a service dog training session, it occurred to me that the dogs would be trained to bring me my phone if I asked them to... in their mouth. As disgusting as that sounds, it actually will be very helpful if my phone is on a different floor of my house. The former Apple employee in me was concerned about the potential "water" damage this could cause for the phone, not to mention the potential for drops in the dirt. Ladies and gentlemen of the iPhone persuasion, I have come up with a solution that not only helps with service dogs, but also with POTS fainting in general. Introducing the Life Proof Case. Check out the website. While before POTS I never would've shelled out $80 on a case, with the number of drops mine gets and the need to have it with me rain or shine, this is gonna be invaluable. I hope you like it. http://www.lifeproof.com/the-four-proofs

Friday, July 6, 2012

Can't sleep...

Do you ever feel sometimes like you hate how you deal with things? Like things that stress you out? If its something big, I tend to shut down. I take a nap, do some mindless stuff, and wait until I am ready to deal with it before allowing myself to stress about it. That happened today. I went to the doctor and they looked at my initial two recordings. I guess I had been so focused on just getting results that I hadn't really thought through what the results would mean and if they even mattered. While its still too soon to know anything, we do know that there is something wrong with the electrical system in my heart. It doesn't seem to be anything potentially fatal like VF or long stops of the heart, but there is something they see that they think is causing me to be fainting. When the doctor was done talking about it (I glazed over pretty much on the medical speak), I asked about treatments. He paused for a minute and explained that we are already doing everything we need to be doing. If we keep seeing the same thing on the data coming in, we could try a pacing pace maker to keep my heartrate in sync with my BP short term, but that only has about a 50% chance of working and is more invasive than the loop recorder I had put in this week. When I asked what the next treatment would be if the pacing didn't work and he put his hands on his hips and said that he thinks we're at the end of the line. The only other options after that would be whatever Dr. Grubb could come up with for me. So I asked him what to do until then, he said we keep doing what we're doing, try to get as much data as possible, and just wait it out. I said, "so we're talking a wheelchair and helmet and fainting all the time?" He said we just need to wait for the data.
I know this may seem like I'm stressing over hypothetical situations, but I'm losing days, weeks, months, and years in my life that I will never get back. Since getting home this morning I pretty much was curled up in bed most of the day avoiding thinking about this. Once it got dark, I forced myself to go outside and water the plants so they don't die. I just got to bed and now the bomb has gone off. Now I'm feeling all this stress, this anger and frustration at once. Sometimes I wish I could just scream and let it all out, but thats never worked for me. I just want my life back. I know it will never be the same as it was. I know I will likely be in a wheelchair for a while. I know it won't be easy, but I'm so tired of watching my life pass me by.

Thursday, June 28, 2012

Surgery tomorrow

My EEG mummy look. 
Tomorrow I am having surgery to get an implantable loop recorder put in. Its a small device, about the size of a flash drive, that will be put under my muscle tissue in my chest. It will detect irregular heart beats and give us a better picture of what is going on with all the fainting. The loop recorder can be left in for up to three years, so that will give us lots of data to work with.
I have to admit, I'm nervous about the surgery. Not in a "am I going to die" kind of way, more in the sense that I'm going to be unconscious on a table with two guys holding scalpels cutting me open. The risk of the surgery is negligible, its the risk of infection post-op that is what we need to worry about, especially with me fainting so much. Each time I faint while recovering, it risks ripping open stitches and allowing bacteria in. For that reason, I think my next week will probably be spent in bed. I'm changed my sheets, stocked my room with snacks and movies, bought some new coloring books, and sorted my next two weeks worth of pills out. I feel ready, I'm just nervous.
My broken finger. :(
Anyway, I wanted to give an update on progress.
I'm on wait lists for service dog and Dr. Grubb.
I broke my finger the other day falling on the steps in front of our house.
My EEG came out normal, no seizures!

In other news, our garden is in full bloom! Got Pots? :)