Well it has been a few weeks since I've been at Mayo and I have already stopped taking Nadolol, which is a beta-blocker. It helps to control my heart and such. I couldn't take that medication when I had my tilt-table test done at Mayo and when I saw my doctor, he said I don't need to take it ever again :) And I don't see much of a change. Occasionally I am more fatigued or have random heart palpitations, but nowhere near what I had expected would happen without having the medication.
Now that I'm off of the Nadolol, I am in the process of weaning off of the Midodrine. This medication has been very effective in the past so I was nervous when my doctor said this was the next medication to get off of. It has been over a week now that I have cut the dose in half. I used to take 10 mg three times a day. Now I am only taking 5 mg. I do feel a little different, but nothing drastic. I do feel fatigued at times. I do get some brain fogging sometimes too. But I am very functional. I can do so much. I never would have expected to be able to do the things I am doing. I was able to go clothes shopping the day I cut the dose in half. I was able to play ping-pong with my family for well over a half hour on several days this week. I can even drive! It is amazing to me that my body truly is recovering. I don't need to take so many medications anymore. I'm just so lucky!!
Sunday, June 26, 2011
Sunday, June 19, 2011
The Good. The Bad. The Ugly.
Well let's start with the bad and the ugly and then work our way to the happier things!
POTS poses many challenges: from not being understood by friends, classmates, and family, to the amount of physical difficulties endured. Most youth with POTS tend to be highly intelligent and fit the stereotype as high achievers. Living with a medical condition is stressful and difficult. It took time to adapt to all of the changes that went on with my body because of POTS. Being an over-achiever doesn't help this though. I wanted to be the best I could possibly be. I wanted to succeed in everything that I did. I just wished for some energy so I could get that "A" in class. I dreamed of becoming the best musician in my school's band and becoming a star athlete.
It was incredibly hard to adapt to my body's changes when I was so young because I didn't understand what exactly was going on and everyone else seemed to know what was best for me. I felt that I had no control over my own life. This is difficult still too even though I'm 20 now. Symptoms came and went, and varied dramatically in severity. I had to overcome many symptoms just to get out of bed in the mornings and force my body to move. I was lightheaded, was near fainting every time I attempted to stand up or wait in line, extreme fatigue, had heart palpitations, tremulousness, chest discomfort, generalized weakness and muscle pains, tight joints, shortness of breath, excessive sweating, blood pooling in my limbs, intolerance to heat, humidity, and temperature changes, cognitive impairment, dizziness, tachycardia (fast heart rate), chills, noise and light sensitivity, was easily over-stimulated, had numbness in my feet and legs, irregular menstrual cycles, loss of appetite, chemical sensitivities, bloating after eating meals, headaches, blurred vision, dysfunction of pupil contraction/dilation, disorientation, exercise intolerance, brain fogging, pressure behind the eye, and impaired concentration.
This made it extremely difficult to have a social life. Since POTS usually affects teens and young adults, like myself, it was especially difficult since these are the most important years to have a social life. I wasn't able to attend events anymore. I was not able to enjoy time with my friends and family because I was too exhausted.
I had been really active before the onset of POTS. I was a cross-country runner, played in the honors band at school, and took a few honors courses. I definitely fell under the description of an over-achiever. I was the teacher's pet of most of my classes as my classmates would say. Then when I was about 14, a freshman in high school, I started to feel pains in my feet that continued to travel upwards until my entire body was in extreme pain and I couldn't do anything about it. No longer could I do those things my life once revolved around. I was too exhausted to even complete some of my homework assignments. This dramatic change was difficult for me to accept and confusing to everyone around me. This is the bad and the ugly. It's very difficult and you feel as though you are walking up a mountain carrying an elephant. Every activity is challenging. I had to give up a lot that I loved, but I did gain some things too.
I gained an understanding of what it's really like to be bedridden, be stuck in a wheelchair, feel intense pain that I would imagine arthritis patients or fibromyalgia patients suffer from, be too exhausted to do things, feel as though the world is now against me, and feel as though I'm not worth it. Everything changed so dramatically and everything was so sudden. One day I was perfectly healthy and the next I had such a struggle physically pulling myself out of bed. I can understand what it's like for other patients and how they must feel. I gained a compassion and I learned to accept help from others. I learned to let my body do its own thing and I will catch up with everyone later. I learned to listen to my body even though I didn't want to. I learned more about anatomy, the medical field in general, and everything there is to know about insurance companies!! Ha Ha!!
I also learned that through humor I can overcome anything. Having that positive attitude and the hope that there will be a day when I get better motivated me every day. Having that high achieving mindset motivated me to keep going and force my body to do things like walking even when I was in such horrible pain and I was so dizzy. This is what helped in my recovery. Because of the things I learned and the motivation I had, I am now recovering from POTS. It may still be another 1 or 2 years until I'm truly better, but at least I can see the light at the end of the tunnel now! There may be plenty of ugly days, but the things I have gained through having a medical condition will forever be a part of me! :)
POTS poses many challenges: from not being understood by friends, classmates, and family, to the amount of physical difficulties endured. Most youth with POTS tend to be highly intelligent and fit the stereotype as high achievers. Living with a medical condition is stressful and difficult. It took time to adapt to all of the changes that went on with my body because of POTS. Being an over-achiever doesn't help this though. I wanted to be the best I could possibly be. I wanted to succeed in everything that I did. I just wished for some energy so I could get that "A" in class. I dreamed of becoming the best musician in my school's band and becoming a star athlete.
It was incredibly hard to adapt to my body's changes when I was so young because I didn't understand what exactly was going on and everyone else seemed to know what was best for me. I felt that I had no control over my own life. This is difficult still too even though I'm 20 now. Symptoms came and went, and varied dramatically in severity. I had to overcome many symptoms just to get out of bed in the mornings and force my body to move. I was lightheaded, was near fainting every time I attempted to stand up or wait in line, extreme fatigue, had heart palpitations, tremulousness, chest discomfort, generalized weakness and muscle pains, tight joints, shortness of breath, excessive sweating, blood pooling in my limbs, intolerance to heat, humidity, and temperature changes, cognitive impairment, dizziness, tachycardia (fast heart rate), chills, noise and light sensitivity, was easily over-stimulated, had numbness in my feet and legs, irregular menstrual cycles, loss of appetite, chemical sensitivities, bloating after eating meals, headaches, blurred vision, dysfunction of pupil contraction/dilation, disorientation, exercise intolerance, brain fogging, pressure behind the eye, and impaired concentration.
This made it extremely difficult to have a social life. Since POTS usually affects teens and young adults, like myself, it was especially difficult since these are the most important years to have a social life. I wasn't able to attend events anymore. I was not able to enjoy time with my friends and family because I was too exhausted.
I had been really active before the onset of POTS. I was a cross-country runner, played in the honors band at school, and took a few honors courses. I definitely fell under the description of an over-achiever. I was the teacher's pet of most of my classes as my classmates would say. Then when I was about 14, a freshman in high school, I started to feel pains in my feet that continued to travel upwards until my entire body was in extreme pain and I couldn't do anything about it. No longer could I do those things my life once revolved around. I was too exhausted to even complete some of my homework assignments. This dramatic change was difficult for me to accept and confusing to everyone around me. This is the bad and the ugly. It's very difficult and you feel as though you are walking up a mountain carrying an elephant. Every activity is challenging. I had to give up a lot that I loved, but I did gain some things too.
I gained an understanding of what it's really like to be bedridden, be stuck in a wheelchair, feel intense pain that I would imagine arthritis patients or fibromyalgia patients suffer from, be too exhausted to do things, feel as though the world is now against me, and feel as though I'm not worth it. Everything changed so dramatically and everything was so sudden. One day I was perfectly healthy and the next I had such a struggle physically pulling myself out of bed. I can understand what it's like for other patients and how they must feel. I gained a compassion and I learned to accept help from others. I learned to let my body do its own thing and I will catch up with everyone later. I learned to listen to my body even though I didn't want to. I learned more about anatomy, the medical field in general, and everything there is to know about insurance companies!! Ha Ha!!
I also learned that through humor I can overcome anything. Having that positive attitude and the hope that there will be a day when I get better motivated me every day. Having that high achieving mindset motivated me to keep going and force my body to do things like walking even when I was in such horrible pain and I was so dizzy. This is what helped in my recovery. Because of the things I learned and the motivation I had, I am now recovering from POTS. It may still be another 1 or 2 years until I'm truly better, but at least I can see the light at the end of the tunnel now! There may be plenty of ugly days, but the things I have gained through having a medical condition will forever be a part of me! :)
Wednesday, June 8, 2011
Monday, June 6, 2011
Mayo Trip Part 2
I'm still at Mayo, but we're going home tomorrow which is really nice. I had my tilt-table test done this morning. That wasn't so fun. I was really tired in the morning and I was slow moving. For the tilt-table test, you lie down on a table that has the capability to move from a horizontal position to vertical position. The tilt-table test has a few parts to it: the part where they tilt your bed so you're practically standing up and monitor your heart rate and blood pressure, the part where you have to exhale into a plastic tube in order to monitor lung capacity, and the part where they stimulate your sweat glands on some areas of your body.
Since I was tired and did not have my important POTS meds because they would affect the results of the test, I was not comfortable. Breathing into the tube was incredibly difficult and I felt like I was stuck underwater without any oxygen. I felt like I was going to pass out when they tilted my bed too. This was discouraging because I thought I would feel better during the test. I felt so awful during the test though. My mom saw what my numbers for my heart rate and blood pressure were though during the whole test. She thought I had improved.
When I saw Dr. Fischer, he said yes I am improving! He said my tilt-table test results were almost normal for a non-POTS person. My heart rate only increased 19 beats per minute as compared to about 50 beats per minute from my 2008 test!! So that means that my body is clinically improving! I may not be feeling quite where I want to be feeling, but my body is improving.
Dr. Fischer and I have an action plan that starts off with me not taking Nadolol (heart medication) ever again and see how my body reacts to that. Then, I will try to wean off of Midodrine (POTS medication) since my body is improving and is no longer needing the medication necessarily. He also said that within 1 or 2 years I may not have POTS anymore!! My body is improving so much that I may not experience anymore POTS symptoms next year! I'm definitely hoping for that!
I'll keep you all updated with my progress. Until next time :)
P.S. This fantastic news is also special because today is the Day of Visibility for POTS and other conditions. So to find out that I am recovering is so special on Day of Visibility :)
Since I was tired and did not have my important POTS meds because they would affect the results of the test, I was not comfortable. Breathing into the tube was incredibly difficult and I felt like I was stuck underwater without any oxygen. I felt like I was going to pass out when they tilted my bed too. This was discouraging because I thought I would feel better during the test. I felt so awful during the test though. My mom saw what my numbers for my heart rate and blood pressure were though during the whole test. She thought I had improved.
When I saw Dr. Fischer, he said yes I am improving! He said my tilt-table test results were almost normal for a non-POTS person. My heart rate only increased 19 beats per minute as compared to about 50 beats per minute from my 2008 test!! So that means that my body is clinically improving! I may not be feeling quite where I want to be feeling, but my body is improving.
Dr. Fischer and I have an action plan that starts off with me not taking Nadolol (heart medication) ever again and see how my body reacts to that. Then, I will try to wean off of Midodrine (POTS medication) since my body is improving and is no longer needing the medication necessarily. He also said that within 1 or 2 years I may not have POTS anymore!! My body is improving so much that I may not experience anymore POTS symptoms next year! I'm definitely hoping for that!
I'll keep you all updated with my progress. Until next time :)
P.S. This fantastic news is also special because today is the Day of Visibility for POTS and other conditions. So to find out that I am recovering is so special on Day of Visibility :)
Sunday, June 5, 2011
Mayo Trip Part 1
Well, along with my mom, I'm at the Mayo Clinic in Rochester, MN right now. I'm laying in this really nice comfy bed with my laptop on my lap and I'm just exhausted. We just got back from eating dinner at Olive Garden. Don't get me wrong, I love Olive Garden's food, but all that I wanted all day was sleep. Yesterday evening we arrived here in Rochester. I had to stop taking my Midodrine and Nadolol (2 POTS medications) yesterday because I will be having another tilt-table test done tomorrow morning. The meds help to counter some of my POTS symptoms, so now I'm not getting enough oxygen. And this leaves me super fatigued and sleepy.
It is difficult to carry out conversations because my words do not come out easily. I can't form my words or get my ideas across. My mom is constantly asking me to repeat myself because she doesn't understand what I'm saying, which takes even more energy out of me. It is frustrating. I have to focus a lot on my breathing so that I can get as much oxygen in my system as I can. I am experiencing a little more tremulousness than normal, which is expected also because this is another POTS symptom. Headaches and brain fogging are more prominent now too.
I'm toughing it out as much as I can. It's just very hard to have these symptoms that I haven't experienced in a long time. I haven't had very many headaches or days when I just can't physically do anything. I feel like a ragdoll because I just can't do anything and I'm so weak. Such a difference from yesterday or this morning because I was able to walk around for almost 3 hours just window shopping with my mom. We walked at a very slow pace, but I was still able to be on my feet for that long in the morning! Afterwards, though, we came back to the room and I felt exhausted as if I just ran 3 marathon races. I wanted so badly to go to sleep, but I knew I would be asleep for the rest of the day if I fell asleep! Ha ha! So since about 3 in the afternoon my energy level has plummeted. I'm running on empty and it's not even 9 o'clock!
Oh well...another busy day tomorrow so that's why I am splitting this post into 2 parts. Mayo Trip Part 1 was today. I'm always hoping for a better tomorrow whether I'm at Mayo or not :)
It is difficult to carry out conversations because my words do not come out easily. I can't form my words or get my ideas across. My mom is constantly asking me to repeat myself because she doesn't understand what I'm saying, which takes even more energy out of me. It is frustrating. I have to focus a lot on my breathing so that I can get as much oxygen in my system as I can. I am experiencing a little more tremulousness than normal, which is expected also because this is another POTS symptom. Headaches and brain fogging are more prominent now too.
I'm toughing it out as much as I can. It's just very hard to have these symptoms that I haven't experienced in a long time. I haven't had very many headaches or days when I just can't physically do anything. I feel like a ragdoll because I just can't do anything and I'm so weak. Such a difference from yesterday or this morning because I was able to walk around for almost 3 hours just window shopping with my mom. We walked at a very slow pace, but I was still able to be on my feet for that long in the morning! Afterwards, though, we came back to the room and I felt exhausted as if I just ran 3 marathon races. I wanted so badly to go to sleep, but I knew I would be asleep for the rest of the day if I fell asleep! Ha ha! So since about 3 in the afternoon my energy level has plummeted. I'm running on empty and it's not even 9 o'clock!
Oh well...another busy day tomorrow so that's why I am splitting this post into 2 parts. Mayo Trip Part 1 was today. I'm always hoping for a better tomorrow whether I'm at Mayo or not :)
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