Topamax and POTS. A bad combination.

Ok, so I went off the Topamax and I'm feeling much better. My cardiologist said that even though orthostatic intolerance is not a listed side effect, medications are not tested on people with POTS and we tend to react differently to them. He also said that some people with POTS are also more sensitive to medications and that medications may work differently in their systems. Meanwhile, my neurologist was telling me to stay on the medication and that passing out is not a side effect. I think this is one of those tough situations where you need to listen to your gut and go with what your body is telling you. Obviously I am not a doctor, and you should always talk to a doctor before starting or changing any meds, but if you feel like something is wrong, tell your doctor. As patients we need to remain active in running our treatment as partners with our doctors.

But you don't look sick...

This is an interesting little article. I happen to have fibromyalgia in addition to POTS, I found that this site had a number of interesting things for fibro. I do like the "you don't look sick" point it makes. If you let yourself "go" and act the way you feel, no one wants to be around you and they feel uncomfortable if they need to be, however if you put on a brave face and try to act normal, people say "but you don't look sick" and don't understand that you are really having a tough time. I guess life for those of us with chronic invisible illnesses are constantly trying to find a balance between the two.

http://www.healthcentral.com/chronic-pain/cf/slideshows/top-10-things-not-to-say-to-a-fibromyalgia-patient/we-all-get-more-aches-and-pains-as-we-get-older/?ap=825

There is actually a website/online community for people with invisible illnesses too!
http://www.butyoudontlooksick.com/

From my journal two summers ago...

"I’m scared. There, I said it. I’m scared. Terrified even. I feel like my life is spinning out of control and I can’t seem to stop it. There is something inside me that is causing problems, both physical and emotional. I try not to think about it, but the pain is constantly there to remind me. Its there when I eat, when I move, when I laugh too hard. No matter what I do, its there reminding me that I don’t know what is causing it and I can’t make it stop. I know possibilities, that scares me, but thinking that the doctors may not know what is wrong, that I might have to live like this for years to come is what I am the most scared of. I have plans for my life. I’m not too keen on change, I don’t like bad surprises, I’m impatient and stubborn. All I know right now is that there is something wrong with me, and no one can seem to figure out what. I hate sitting in the house watching the same movies every morning because I can’t sleep through the pain and can’t make myself get out of bed and deal with the pain of moving around. I’m going crazy sitting in the house all summer doing the same thing every day. I want to be going to work, making money, being with people, enjoying summer like everyone else seems to be doing. I want to not be worried, to not be wondering if I’ll be able to live a normal life again, to wonder if I can have kids, or if I’ll live long enough to see them grow up. It feels like someone read my mind while I was dreaming and decided to destroy all my dreams. Will I ever get them back? I’m not saying I’d just roll over and give up, thats not me. I’d fight for it. For my dreams. For my future. I just need to know what I’m fighting and how to fight so I can win. I’ve always been a fighter, an independent person, that girl that no one worries about how she’ll turn out. I’m proud of that person. I hate having to ask for help, to rely on other people for things. Its humiliating to have to ask people to help you walk, to bathe, to make food for you. Over the years, I’ve learned how to take care of myself, and for the most part, before this, I could do that. Now that I'm sick, that is hard if not impossible to do. And that kills me." 


Today i am grateful that I have a diagnosis and that the fear of the unknown is behind me. If you're trying to get a diagnosis, keep positive, the answers will all come in time. 

On days like today lyrics keep me going... Maybe they'll help you too...

It’s an uphill climb 
But it’s all you know
So you spin your wheels
And dig your heels and down you go 

So predictable
But it’s not your fault
How can you expect to do your best
When you’re scared to fall

Cause the pain is real
But you will survive
That’s how you know you’re alive

Cause it’s Okay Now, Hey Now
You can let go
That’s when you 
Find out, Find out
Everybody knows
That there just 
Aint no, Aint no
Easier way out
I know it might not look that way
But You’re gonna live to fight another day
 - Brandon Heath "Fight Another Day"


I'm not really into Christian music, but he came to my school and I really like his music. His lyrics are hit and miss, but this song is great!

Been a while, which is good, but...

So I had been doing well. Well, POTS wise at least. I developed migraines which we are testing for and seeing a neurologist for (apparently a normal sign of POTS). I am taking Imatrex for the bad ones which is very helpful, but I just started Topamax to try to prevent them (verdict is still out on that). I basically have a headache everyday of whatever level which is manageable, but sucks.

As icky as it is to talk about, for those of you who have POTS who read this, I feel I should mention that my body temp issues are out of control right now. Not sure if its the weather or what, but if you are experiencing the same thing, ur not alone. Hot flashes are in full swing in fall!

I'm getting a serious case of the stir crazies... I haven't left the house for anything other than doctors with the one exception of a few hours last Saturday for a wonderful apple and pumpkin picking trip. I am very glad I got to do that since I don't think I'll be able to do any of the other things I wanted to do this fall and most of them have an end date. The PA Renn Faire, Pennhurst Asylum Haunted House (friends work here), Eastern State Penn Haunted House (I used to work here), The Mummy Exhibit at the Franklin Institute, to name the tops on the list. I was supposed to go to two of them this weekend, but no one wanted to go with me. That seems to be a new issue for me, I feel like going out, but don't feel up to going out alone, and no one wants to or has time to do things with me. Go figure, people have lives. :op

Well here are a few pics from my day with the apples and pumpkins. :)

 Riding to the orchard... 

ps. Can you tell I was having a hot flash? A tank top on a 56 degree day? ha!

And the orchard...

5:54... I would rather be sleeping...

So its almost 6am and I can't sleep. I am in very bad pain (probably because changing weather due to it becoming fall and rain). I have tried tylenol, tramadol, heating pads, massage, relaxation techniques, meditation, tai chi (although I only remember about 3 min of it), hot camomile tea, a warm shower, and nothing is working. I now have taking my sleeping pill 6 hours ago, so soon it will be wearing off. This is one of those things that is frustrating about my sickness. I have chronic sleeping problems, but pills don't seem to help some days (like today). Does anyone else have problems sleeping with POTS? Any ideas? Is anyone even reading these?

Frustrations

Today when I explained to an acquaintance why I wasn't working or going to school, he said something that threw me for a loop. He said "oh, so you're basically on an extended vacation?" I didn't know what to say...

No, this isn't a vacation. I don't wish to be living like this. I want nothing more than to have my life back, to have my body stop betraying me, to be able to be a normal 26 year old again. This isn't fun for me. I have a disease that is incurable, unpredictable, and disabling. No its not something that you can see, but that doesn't mean that it isn't there. I have good days and bad days. But the fact is, I have barely left my room, much less the house in the past few months. When I do get out, more often than not, I need to go home before I want because I feel so bad. I don't like hearing friends telling me about all the fun things they're doing out in the world while all I can do is sit in bed sipping ginger ale to help my stomach and watching reruns of Bones on Hulu because there isn't anything else I can do. Its not a vacation when you are put through countless medical tests in an attempt to make you better, most of which being uncomfortable and unpleasant. Its not a vacation when on a good day your pain is at a 3, you only feel like you're going to pass out a few times, and you manage to stand for a whole grocery or restaurant trip before collapsing in bed to recover. I feel like the time in my life is flying by, while I'm stuck in place. I have been missing out on things and falling behind for two years. I want to catch up. I want to be working, I loved my job. I want to be in school, I really was doing well and enjoying my classes. I want to go out with my friends. I want to be me again. I want this to all stop. So no, this is not a vacation. 

Hurricanes, and earthquakes, and NOLA! Oh My!

So I know its been a while since I posted anything. I went on a vacation, came back, got the house ready for out of town visitors (who never made it), got the house ready for a hurricane (that did make it), catching up with friends, and have very little to report other than that.

I went to New Orleans to visit my family. It was a great, very relaxing visit. Lots of floating in my Nannan's pool and sitting around a table and chatting. One not so surprising benefit of the trip is that all the salty NOLA food raised my BP enough that I didn't need my mitodrine! Unfortunately, since coming back, I have had to go back on it though. The drive to and from NOLA wasn't as bad as I had thought it would be. My sister and I split the driving, with her taking the bulk of it. We spread the 26 hour trip into 3 days, with plenty of stops. I made sure that I drank a TON of water and gatorade pouches, ate salty food, and kept my protein up, and it was fine. To those of you with POTS who were like me and afraid to take a road trip, I would suggest you try it, just be prepared. You know your body, you know what it needs, but staying close to home all the time out of fear is no way to live.
On the trip, I discovered that my sunscreen allergy was indeed real, as may be allergies to berries and bananas. I saw an allergist who is doing tests to see. He said that new and worsened allergies are a normal part of dysautonomia since the autonomic nervous system controls it all somehow. Oh good, one more thing to add to the list of malfunctioning parts. :op
After NOLA, we got home to a messy (post trip packing) house that needed to be cleaned for a visit from two relatives. It took us 3 days to make the house clean enough to be acceptable, and then Hurricane Irene decided to hit us. We stocked up on the typical items (batteries, food, water in tupperware containers, flashlights, and prescriptions), and prepared to hunker down through the storm. Needless to say, the relatives who were set to visit didn't make it here, they stayed where they were. In the storm, we lost a tree, and had yard flooding, but were very lucky that nothing worse happened. At one point, the storm was so bad that my mom had us go pack bags for a shelter if we needed to leave. At another point, there was a tornado warning for our area, so we all sat in the basement stairwell with our dog for 45 minutes. It was scary, but nothing horrible.
After the hurricane, I spent some time just me, alone, in my room. I didn't feel well, didn't want to go out, be social, or anything else. Probably depression had something to do with it. It is very easy to get discouraged with POTS, your body dictates your life and limits the things you can do with it. I get very frustrated by the new limitations my body has set for me. While I am doing much better than I was last summer, I still can't lift heavy objects, do any kind of cardio, or stand for too long. But my Mom got me out of bed a few times, luring me with dinners at my favorite restaurants or visits to craft stores. My friend Camo got me to go to a small faire with him and his two daughters, it was a great time! I did have a little bit of trouble keeping up, and at one point, I felt faint, but I took a pill, drank some more water, and the feeling went away. After the faire, we went to a little vegan chinese buffet that surprised me. It was really good! I'm still new to the whole vegan food thing, so the idea of eating a meatball with no meat, or sweet and sour tofu still throws me off a bit. But I have found that more often than not, I enjoy the meat alternatives if they're not overcooked. I am also noticing that with the vegetarian diet, by bp stays higher and I feel slightly healthier. While I had a great time out, a full day with two very excited kids in 80 degree heat was about all I could do. My bed was oh so welcoming when I got home, I slept for 14 hours straight! The day before yesterday I went to another friend's house for a craft night. I had to cut out fabric for my sister, and she was drawing for her upcoming art show. I was over there for a while, and once 9pm rolled around, I was starting to get tired, I should have left then, but I waited until after she and I made dessert (my chocolate crescent rolls from my food blog). By the time I left, it was 10pm. I didn't realize the road home was under construction at night, and so I ended up being put on a detour that led me all around the city in a roundabout way, and didn't have a clue where I was. I finally made it home around 11, and really shouldn't have still been on the road, lesson learned, leave when I start getting tired.
For 7 weeks now, I've had a sinus infection that won't go away. I've been on 6 weeks of antibiotics, 3 weeks of prednisone, and countless sinus pills. My allergist and GP seem to think it may be a fungal infection, I hope not, that would mean surgery. I have gotten the all clear to go back to work, but not until I get the sinus condition out of the way, so I'm really hoping its going to go away. I have a CT in 2 weeks when I'm done with this round of antibiotics, so we'll see. Crossing my fingers that I can go back to work in October! Wish me luck!

Walk it out...

Its funny how some days I can walk around the lake and other days I can just barely make it to the mailbox. I guess I just need to make those good days count. Today Lexi and I made it to the mailbox and back three times! Quite proud of myself. :) I also have been using my baby 2 lb free weights in bed to try to get my arms stronger. So far I'm not counting reps, just using them until my arms hurt. But I feel like even just a little bit is still more than nothing! Just make the little things count. Walking up the stairs, walking around the grocery, standing to cook. It all adds up. 


I took this picture of a butterfly this spring with my iPhone 4. It makes me smile, hope it makes you smile too. :D

I saw this on another person's blog and thought I'd pass it on...

Invisible diseases. What can I do to help myself feel better?

Because symptoms vary among these Invisible Diseases, and each person reacts differently, it is impossible to have one straight answer for everyone. However, there are some general adjustments that many people have found to help them. Of course, check with your doctor before making any changes to your daily habits and health regulations.

1. Many people have found that a low carbohydrate (not NO carb) diet has helped tremendously. The regulation of blood sugar is important for the body in general. An easy rule of thumb is to stay away from simple and refined flours and sugars. In other words, avoid most of the white powdery substances in food. More complex carbs like whole grain and whole wheat tend to help people digest slower and gentler than processed carbs.
2. Probiotics can help to balance digestion and infection regulation. You can find probiotics (such as Acidophilus) at health food stores and online.
3. Temperature regulation seems to be very important for most people with these Invisible Diseases. The body is so very sensitive to changes when a person has an Invisible Disease. So, try to avoid extreme hot or extreme cold.
4. Drink tons of water! Two to four liters per day is generally recommended due to the common problem of low blood volume and blood pressure issues that so often occur among people with Invisible Diseases. This can make a much bigger impact than you realize. It can also help with dizziness and nausea in many cases, due to the constant dehydration in the body.
5. Listen to beautiful music and uplifting entertainment. Believe it or not, music has shown to effect our bodies and overall health. Think about it, when you hear loud screaming banging music, it causes a different internal reaction than if you listened to calm soothing classical sounds. The mood can be lifted with the right music and entertainment. Avoid harsh chaotic sounds and scary or depressing movies. Because Invisible Diseases cause brain fog, the effects of a simple scary movie can be quite impacting and lasting. This causes unnecessary stress on the body.
6. Laugh! Even if you have to force a little laugh out here and there just to get it going, just find some way to have a little laughter. Even watching a funny movie can help. Anything to brighten the mood is very helpful when you have such a sensitive body. Laughter causes physical movement as well, which ignites the lymphatic system. This benefits the immune system, so laughter really IS healing, on many levels.
7. Most importantly, do anything that you can to surround yourself with a supportive and loving group of people, including your doctors and nurses. This can be very difficult for some people, but please try any way that you can to find doctors who understand your Invisible Disease, or who are at least willing to learn about it. Of course, loving relationships in your daily life are essential as well. Reach out to others like you online, create friendships that way and share information. Always remember that there is hope! Keep hoping and knowing that people are working hard to help you, even if you cannot see it directly. Know that you are not alone and that people really care about you!