The waiting game stinks!!!! I really don't want to wait forever to hear back from my doctor. I want answers. I want some relief. It feels like they constantly are forgetting me because I am not there in the office talking to them face-to-face. I am attempting to talk to the middleman in order to talk to my doctor. Why can't this process be easier? Or at least faster?
I feel sorry for the people trying to contact their doctors when they are in emergency situations. I know I'm not an emergency to my doctors, but I can barely function. I can barely make it through my day. I am too exhausted and brain fogged to do much at all. My schoolwork is being affected by it already. Yes, I still have decent grades, but I'm afraid that if I am too brain fogged or fatigued, my test scores will drop or I won't be able to do the best I can possibly do. I stepped down from one of my clubs so that my responsibilities will be filled by someone else. I have retreated, and I don't like it! I do know, however, that this is for the best.
Somehow, some way, I will feel better. Whether or not my doctor can give me a clue into how I can be feeling better is the question now. I know that my determination and strength will help me to feel better eventually. It just would be so much easier if I had some help from effective medications or something! Patience is key now. I will try to be a patient patient! :)
Tuesday, January 31, 2012
Monday, January 30, 2012
Theme Song of this Month
Even though the song is technically about a relationship ending, I feel that the lyrics are what really count. What doesn't kill us really does makes us stronger....so I have had this perspective since day 1---since 2008.
"You think you got the best of me. Think you had the last laugh. Bet you think that everything good is gone...What doesn't kill you makes you stronger. Stand a little taller...What doesn't kill you makes a fighter."
This song is true with me. My relationship with POTS has made me into a fighter. It has made me stronger. I have the strength to overcome this chaos and pain. Everything is still good; the good is not gone. I can still do some things that I want to do. I have to be thankful for that. I do stand taller because I know that POTS has not won. I know it won't.
Hoping to keep this perspective even through all the chaos of having POTS. :)
Thursday, January 26, 2012
Frustration...
Well, in my last post I said how I would probably go on the 5 mg of Midodrine. Well, today I couldn't take the symptoms anymore. I had to start the 5 mg because I couldn't function. It's not even the pain that is truly bothering me anymore. That I can deal with. It's the brain fogging and fatigue that drive me absolutely crazy! I can barely get out of bed. I could not pay attention in class or at work. I feel like I'm in a daze or that my brain is falling apart. The things I used to be so amazing in, like comprehension of class material, speaking, creating art, and being efficient and productive have all been thrown out the window. I feel as though I cannot do these things well at all. I constantly misplace items, forget what I have learned in classes, have trouble forming my words and conveying my thoughts to others, and staying on-task. Considering I have POTS and cannot do other things that "normal" people can do (go to social outings, play sports, and travel), I have always relied on my inner strengths and knowledge to be successful. Now that those things have also been damaged, it is difficult to accept these changes.
No matter what I do, it doesn't seem to matter. I do EVERYTHING that my doctor tells me to do. It is so frustrating to just handle the symptoms when I am trying so hard to get better. My body is going to do what it's going to do, but I just want it to cooperate with me! It is so hard to convey the frustration to others because they just see me as the girl who is an overachiever who just looks tired, even though they know I have POTS. It almost feels like my whole body is damaged, like some specific part is missing, and I need to find that part to fix everything. But, that is not the case. I have POTS. It is frustrating. All I can do is continue doing what my doctor tells me to do and keep hopeful thoughts that everything will get better soon. All of my hard work will pay off eventually. Sure it is definitely not fun in the present, but I'm pretty sure the future holds happy and fun times ahead! All I can do is wait.
No matter what I do, it doesn't seem to matter. I do EVERYTHING that my doctor tells me to do. It is so frustrating to just handle the symptoms when I am trying so hard to get better. My body is going to do what it's going to do, but I just want it to cooperate with me! It is so hard to convey the frustration to others because they just see me as the girl who is an overachiever who just looks tired, even though they know I have POTS. It almost feels like my whole body is damaged, like some specific part is missing, and I need to find that part to fix everything. But, that is not the case. I have POTS. It is frustrating. All I can do is continue doing what my doctor tells me to do and keep hopeful thoughts that everything will get better soon. All of my hard work will pay off eventually. Sure it is definitely not fun in the present, but I'm pretty sure the future holds happy and fun times ahead! All I can do is wait.
Wednesday, January 25, 2012
Mother Nature sure is confusing me!
Well the weather has been crazy this winter!! Today I walked to class and had sleet hit my face. On the way back to my dorm, it was pouring rain. Now it is super dark and cold. Such a strange season! It definitely does not help with my symptoms though. Having the weather bounce up and down in temperature and in precipitation makes it difficult for me to differentiate muscle or joint pains due to working out more now and the tightness in my muscles and joints due to the weather changes.
It is frustrating because I need to figure out if I am feeling better on the 2.5 mg of Midodrine that I started last Friday. My doctor says to try that out for a week, then if I don't feel better, I will go on 5 mg. So, no more Nadolol, which is good because it made me pretty tired (even more so than usual). But, due to the weather fluctuations and my symptoms fluctuating, I cannot tell if I feel any different with the 2.5 mg of Midodrine 3 times a day. So, I hope that with the increase that I will start on Friday, I will get to feeling even better!! :)
It is frustrating because I need to figure out if I am feeling better on the 2.5 mg of Midodrine that I started last Friday. My doctor says to try that out for a week, then if I don't feel better, I will go on 5 mg. So, no more Nadolol, which is good because it made me pretty tired (even more so than usual). But, due to the weather fluctuations and my symptoms fluctuating, I cannot tell if I feel any different with the 2.5 mg of Midodrine 3 times a day. So, I hope that with the increase that I will start on Friday, I will get to feeling even better!! :)
Monday, January 16, 2012
Yeah I'm still there...
Even with a medical condition like POTS, I'm still here. I'm still me. I can do whatever I want to. I can achieve anything I want to. Sure there are plenty of limitations with what I can do, but I can still do things I want to. If I push through the pain, force my fatigued body to get up, then I can go to college, get straight A's, be involved in multiple organizations, and take part in hobbies. It takes a heck of a lot to push through the pain and fatigue and brain fogginess, but I can do it. It is possible.
Just as Eleanor Roosevelt said, "You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.' You must do the thing you think you cannot do."
POTS may be tough to live with, but I know that no matter what, I can achieve anything I want to.
Being up at the Mayo Clinic was frustrating, but at least I have an answer as to why my symptoms were getting out of control last semester...I am officially NOT in recovery anymore. My POTS has relapsed. There is no way to truly explain why it happened, but it did. Now I am back on the Nadolol, and possibly the Midodrine again within the next few weeks. I still am very very fatigued and brain fogged. The generalized pain is alright, definitely tolerable, but not unnoticeable. I tend to have more headaches that are annoying at times and get pretty dizzy because of the Nadolol's effect of slowing down my heart rate. But, it should get better. I should be feeling better soon! I am just very thankful that I have a wonderful support system and understanding professors! That makes everything so much easier! :)
Just as Eleanor Roosevelt said, "You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.' You must do the thing you think you cannot do."
POTS may be tough to live with, but I know that no matter what, I can achieve anything I want to.
Being up at the Mayo Clinic was frustrating, but at least I have an answer as to why my symptoms were getting out of control last semester...I am officially NOT in recovery anymore. My POTS has relapsed. There is no way to truly explain why it happened, but it did. Now I am back on the Nadolol, and possibly the Midodrine again within the next few weeks. I still am very very fatigued and brain fogged. The generalized pain is alright, definitely tolerable, but not unnoticeable. I tend to have more headaches that are annoying at times and get pretty dizzy because of the Nadolol's effect of slowing down my heart rate. But, it should get better. I should be feeling better soon! I am just very thankful that I have a wonderful support system and understanding professors! That makes everything so much easier! :)
Sunday, December 25, 2011
Merry Christmas...hoping for a Happy New Year!!
Well I haven't updated in quite awhile. I have been busy with school and not feeling 100% either. I have been experiencing several symptoms that I used to have from way back when, which is extremely frustrating!! A lot of my generalized muscular pain has lessened, but I have been experiencing much more:
- pin-point head and eye pains
- troubles with speaking, especially forming words into sentences and verbal expression (troubles saying what I want to say correctly and consistently)
- problems with short-term memory and remembering instructions (difficult to carry out a task that requires multiple steps)
- over-stimulation with sensory stimuli
- temperature over-sensitivity
- brain fogging!!!
- shortness of breath
These symptoms interfere with my everyday living. This is difficult for me to cope with because of the great impact it has. They affect my ability to complete my schoolwork and social life. Today is Christmas Day and everyone is at our house--grandparents, aunt, uncle, etc. The problem is that I am overwhelmed and very very fatigued. I cannot take part in the social experience of small talking with family members, or even sitting in the same room as everyone. I am exhausted by the time I get ready for everyone to come over (blow-drying my hair, putting on makeup, getting dressed, helping with last minute tasks), so this causes me to already hit my threshold. I am physically able to get ready, but that is too exhausting for my body that I cannot do anything afterwards. I become short-tempered, withdrawn/dazed, and sleepy. It feels as if I did not sleep at all for days and that everything around me is at a fast pace while I am stuck in slow motion.
Don't get me wrong, I am very fortunate to have such loving and supportive family and friends. I am also very lucky that I don't have to be stuck in a wheelchair or bedridden for the rest of my life. I can still do things. However, I feel as though I am stuck in someone else's body. I have the potential to do so much more than I am doing now, but I am held back by an uncooperative body. Sure, everyone has their own "disability". POTS is just my disability. I am hoping that with more research, more knowledge, and more help from my doctor in early January when I visit him again that I will feel better and be able to achieve more with each and every day. It is just extremely frustrating when I want to do something but I cannot. It will get better in time. I will have a Happy New Year once I see my doctor again :)
- pin-point head and eye pains
- troubles with speaking, especially forming words into sentences and verbal expression (troubles saying what I want to say correctly and consistently)
- problems with short-term memory and remembering instructions (difficult to carry out a task that requires multiple steps)
- over-stimulation with sensory stimuli
- temperature over-sensitivity
- brain fogging!!!
- shortness of breath
These symptoms interfere with my everyday living. This is difficult for me to cope with because of the great impact it has. They affect my ability to complete my schoolwork and social life. Today is Christmas Day and everyone is at our house--grandparents, aunt, uncle, etc. The problem is that I am overwhelmed and very very fatigued. I cannot take part in the social experience of small talking with family members, or even sitting in the same room as everyone. I am exhausted by the time I get ready for everyone to come over (blow-drying my hair, putting on makeup, getting dressed, helping with last minute tasks), so this causes me to already hit my threshold. I am physically able to get ready, but that is too exhausting for my body that I cannot do anything afterwards. I become short-tempered, withdrawn/dazed, and sleepy. It feels as if I did not sleep at all for days and that everything around me is at a fast pace while I am stuck in slow motion.
Don't get me wrong, I am very fortunate to have such loving and supportive family and friends. I am also very lucky that I don't have to be stuck in a wheelchair or bedridden for the rest of my life. I can still do things. However, I feel as though I am stuck in someone else's body. I have the potential to do so much more than I am doing now, but I am held back by an uncooperative body. Sure, everyone has their own "disability". POTS is just my disability. I am hoping that with more research, more knowledge, and more help from my doctor in early January when I visit him again that I will feel better and be able to achieve more with each and every day. It is just extremely frustrating when I want to do something but I cannot. It will get better in time. I will have a Happy New Year once I see my doctor again :)
Monday, November 28, 2011
November Updates
Well it has been another rough haul. I have been experiencing a lot more fatigue and weakness again. Lots of back and joint pain too. I have relied on my TENS unit on several occasions to get me through classes and social events. I do notice that my symptoms are revolved around the current weather trends (which are all over the place in the Midwest!!) and with stress. I will be going back up to see Dr. Fischer at the Mayo Clinic sometime in the next few months, so hopefully he can give me a reason why my symptoms are all over the place.
I have tried to increase my salt and fluid intake, talk to a counselor, exercise a bit more, rest more, but nothing is really helping my symptoms. It is frustrating because I was doing so well in the spring and summer months this year, but once fall hit, I experienced a lot more POTS symptoms again. In the spring and summer I was able to walk around for well over 4 hours and not get terribly fatigued. Now, I can't do that. I can only do the bare minimum with exercising--only walking to and from class and doing some squats right after I get out of bed.
It is frustrating but I have very supportive friends and family to help get me through the tough days. I hope all of you POTsies out there are as lucky as I am to have such a wonderful support system!
I have tried to increase my salt and fluid intake, talk to a counselor, exercise a bit more, rest more, but nothing is really helping my symptoms. It is frustrating because I was doing so well in the spring and summer months this year, but once fall hit, I experienced a lot more POTS symptoms again. In the spring and summer I was able to walk around for well over 4 hours and not get terribly fatigued. Now, I can't do that. I can only do the bare minimum with exercising--only walking to and from class and doing some squats right after I get out of bed.
It is frustrating but I have very supportive friends and family to help get me through the tough days. I hope all of you POTsies out there are as lucky as I am to have such a wonderful support system!
Tuesday, October 11, 2011
On a More Positive Note
I have experienced some good times along with the painful times since I've been at school again. I have been able to go to an apple orchard and pick apples, pick out pumpkins, go on an inflatable obstacle course, ride on a wagon ride, and go through a corn maze, not to mention cheering at home football games! So on a positive note, there are good times along with the bad. The good times are the ones I focus on the most because I don't want to be dragged down by the pains of P.O.T.S.! I work through them and have fun! Here are some pictures of my latest adventures...
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| As "Sara the Panther" at a home game! |
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| "Billy the Panther" carrying "Sara the Panther" |
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| At the orchard :) |
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| Right before entering the obstacle course |
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| At the pumpkin patch! We picked out 2 huge pumpkins and 1 smaller one too! |
Updates for October
Well so far this semester at school has been very interesting. I have really fun courses like Biological Psychology and Aging, which I enjoy! As for P.O.T.S., it has been a roller coaster! So many ups and downs with P.O.T.S. while I'm at school. I have been really fatigued since the start of this semester, which is normal due to the fact that I am doing a lot of things. I am involved in 4 clubs and have 5 classes to worry about. Anyone would be fatigued with the amount of work that I do...at least that's what I believe.
With this crazy weather changing from 90 degrees to 50 degrees overnight, I have been experiencing exaggerated symptoms. The fatigue is worse again and so is my back pain and brain fogging and shortness of breath. The brain fogging is at its worse over these last 4-5 weeks. I have been so brain fogged that my studies have been affected. I cannot concentrate on tasks that I need to get done, and I have fallen asleep in numerous classes too. This is something that I have never experienced before. I am one of the top students in all of my classes. I sleep roughly 7-9 hours every night. I shouldn't be falling asleep in class!
Also, when I do go to sleep, I cannot wake up in the mornings. I call it the "Sleeping Beauty" symptom. I cannot wake up even with 5 alarm clocks buzzing. My roommate has to shake me and yell my name for me to wake up at times. I get terrified sometimes when going to sleep because I don't want the "Sleeping Beauty" symptom to occur again. I have missed one class and almost missed an entire shift at work because I couldn't wake up. It is scary. I could understand if I wasn't getting enough sleep and then that occurred, but I am getting enough sleep!
Right now I just feel as though my body is improving in some aspects, but having more troubles in other areas. I am in recovery. It is not fun to NOT feel the improvements yet. I know that I have been feeling better as compared to the last few years. But I want to feel even better than I feel now. I know that day will come soon!
For now, my doctor says that I should drink Gatorade G2 in the mornings when I wake up and do some large muscle exercises like calf raises and bicep curls. He also said that I should exercise more consistently and reach a 30-minute time frame of continuous exercise. I have been working on that and have reached 15 minutes. I'm halfway there! It was also recommended that I check out a yoga class here at school since it is free and so that I can work on my blood flow. I should check out talking with a counselor too so that I can talk about the stresses of living with P.O.T.S. I am not thrilled about this last suggestion, but I am willing to do anything to make myself feel better, so I have an appointment set up for next Tuesday morning.
Until the next post, I will be smiling and laughing as always and improving my health with every step that I take! :)
With this crazy weather changing from 90 degrees to 50 degrees overnight, I have been experiencing exaggerated symptoms. The fatigue is worse again and so is my back pain and brain fogging and shortness of breath. The brain fogging is at its worse over these last 4-5 weeks. I have been so brain fogged that my studies have been affected. I cannot concentrate on tasks that I need to get done, and I have fallen asleep in numerous classes too. This is something that I have never experienced before. I am one of the top students in all of my classes. I sleep roughly 7-9 hours every night. I shouldn't be falling asleep in class!
Also, when I do go to sleep, I cannot wake up in the mornings. I call it the "Sleeping Beauty" symptom. I cannot wake up even with 5 alarm clocks buzzing. My roommate has to shake me and yell my name for me to wake up at times. I get terrified sometimes when going to sleep because I don't want the "Sleeping Beauty" symptom to occur again. I have missed one class and almost missed an entire shift at work because I couldn't wake up. It is scary. I could understand if I wasn't getting enough sleep and then that occurred, but I am getting enough sleep!
Right now I just feel as though my body is improving in some aspects, but having more troubles in other areas. I am in recovery. It is not fun to NOT feel the improvements yet. I know that I have been feeling better as compared to the last few years. But I want to feel even better than I feel now. I know that day will come soon!
For now, my doctor says that I should drink Gatorade G2 in the mornings when I wake up and do some large muscle exercises like calf raises and bicep curls. He also said that I should exercise more consistently and reach a 30-minute time frame of continuous exercise. I have been working on that and have reached 15 minutes. I'm halfway there! It was also recommended that I check out a yoga class here at school since it is free and so that I can work on my blood flow. I should check out talking with a counselor too so that I can talk about the stresses of living with P.O.T.S. I am not thrilled about this last suggestion, but I am willing to do anything to make myself feel better, so I have an appointment set up for next Tuesday morning.
Until the next post, I will be smiling and laughing as always and improving my health with every step that I take! :)
Monday, August 1, 2011
Other Girls With POTS
Check out a newspaper article at this site: http://www.pekintimes.com/features/x536831743/POTS-and-Jaclyn-One-girl-s-fight-against-the-invisible-illness?img=2
ABC News Video with a mother talking about her daughter's struggle with a diagnosis: http://abcnews.go.com/Health/video/girl-cured-from-mystery-pots-illness-11143304
ABC News Video with a mother talking about her daughter's struggle with a diagnosis: http://abcnews.go.com/Health/video/girl-cured-from-mystery-pots-illness-11143304
Updates for August
Well it has been a few weeks since I've updated. New news again...I'm slowly weaning off of another medication!! I am weaning off of the Relafen which is a pain medication to help with the muscle and joint pains that I experience. It has helped in the past but now that I am feeling better overall, I don't need to have all of these meds. I want to be feeling this great without my meds! That's the goal! I am just very surprised that I am off of so many of the medications I used to take. I am off of the Nadolol, Midodrine, and soon to be Relafen too.
It is so wonderful to be feeling pretty "normal" for a girl who has seen it all, experienced so much, and is finally able to fully enjoy life again. P.O.T.S. is a condition that did hold me back socially and physically, but not so much anymore! I am able to go out with friends, walk around town when it's so humid outside, play ping-pong competitively with my family, and shop too! I used to never be able to do that. I wasn't even able to walk the length of my house or go up a flight of stairs! I used to never to able to walk for more than a few minutes at the most, and now I am able to walk for hours outside when it's hot, humid, and in a loud atmosphere.
Handling all kinds of sensory things was a struggle for me in the past and it has been so much easier now. I used to get extremely overwhelmed. It felt as if I was delayed and the world was going by so fast. It felt like I was in molasses while everyone else was on the go. I don't feel that as much anymore. I don't feel like I'm held back anymore. I can handle loud noises, have a better reaction time when playing games, don't feel lost in complex situations, and I can physically do things I haven't been able to do since before 2005 when I started having symptoms.
I am lucky. I definitely realize that. Having my hospital bracelet collection reminds me of that every day. I was not sure if I was going to be able to outgrow P.O.T.S. I didn't know if I was going to be in a wheelchair for a good chunk of my life. I didn't know if the doctors would ever give me a promise of recovery. One thing I did know...I wasn't giving up! I wasn't going to sit back and let my condition hold me back. I tried my best to fit in and do things that other people were doing. I tried my best to enjoy every situation I was in and to truly make the most of it. I tried my best to work hard in order to recover.
Now I'm there. I am in recovery. I am not in a wheelchair or bedridden. I am extremely successful in college so far, and not stuck at home while my mom was to care for me like some doctors assumed would happen to me. I am getting stronger, faster, and more thankful each and every day. :)
It is so wonderful to be feeling pretty "normal" for a girl who has seen it all, experienced so much, and is finally able to fully enjoy life again. P.O.T.S. is a condition that did hold me back socially and physically, but not so much anymore! I am able to go out with friends, walk around town when it's so humid outside, play ping-pong competitively with my family, and shop too! I used to never be able to do that. I wasn't even able to walk the length of my house or go up a flight of stairs! I used to never to able to walk for more than a few minutes at the most, and now I am able to walk for hours outside when it's hot, humid, and in a loud atmosphere.
Handling all kinds of sensory things was a struggle for me in the past and it has been so much easier now. I used to get extremely overwhelmed. It felt as if I was delayed and the world was going by so fast. It felt like I was in molasses while everyone else was on the go. I don't feel that as much anymore. I don't feel like I'm held back anymore. I can handle loud noises, have a better reaction time when playing games, don't feel lost in complex situations, and I can physically do things I haven't been able to do since before 2005 when I started having symptoms.
I am lucky. I definitely realize that. Having my hospital bracelet collection reminds me of that every day. I was not sure if I was going to be able to outgrow P.O.T.S. I didn't know if I was going to be in a wheelchair for a good chunk of my life. I didn't know if the doctors would ever give me a promise of recovery. One thing I did know...I wasn't giving up! I wasn't going to sit back and let my condition hold me back. I tried my best to fit in and do things that other people were doing. I tried my best to enjoy every situation I was in and to truly make the most of it. I tried my best to work hard in order to recover.
Now I'm there. I am in recovery. I am not in a wheelchair or bedridden. I am extremely successful in college so far, and not stuck at home while my mom was to care for me like some doctors assumed would happen to me. I am getting stronger, faster, and more thankful each and every day. :)
Saturday, July 16, 2011
It is Frustrating
I am getting better. I know this for a fact. I can vacuum. I can drive. I can finally ride a bicycle! I haven't rode a bike since I first got symptoms of P.O.T.S. in fear that I would pass out or not be able to make it back home if I were to ride a good distance. I can do a lot now.
But my mind wants to do more. Go further. Push harder. But I know I can't do that just yet. I am so driven to push towards recovery, but I am not physically strong enough to do things that I want to do. That's incredibly difficult to handle. It's not like I'm depressed or terribly upset, but it sometimes makes me frustrated because my body does not cooperate with my determination! I'm feeling better and better each day so I get impatient. I want to continue to feel better but in less time! I want to be normal again. I know that is the goal of every person with a chronic condition also, just to feel better and feel a sense of normalcy.
I am extremely lucky. I have a diagnosis. I have a bright prognosis. I am starting recovery. I have such a wonderful support system of my family, boyfriend, and friends. I am lucky. I just have to realize that becoming "normal" again does take some time. If I continue pushing myself as I am doing now, I will feel even better in a faster time. So that is my hope! I am strong, and I will become stronger :)
But my mind wants to do more. Go further. Push harder. But I know I can't do that just yet. I am so driven to push towards recovery, but I am not physically strong enough to do things that I want to do. That's incredibly difficult to handle. It's not like I'm depressed or terribly upset, but it sometimes makes me frustrated because my body does not cooperate with my determination! I'm feeling better and better each day so I get impatient. I want to continue to feel better but in less time! I want to be normal again. I know that is the goal of every person with a chronic condition also, just to feel better and feel a sense of normalcy.
I am extremely lucky. I have a diagnosis. I have a bright prognosis. I am starting recovery. I have such a wonderful support system of my family, boyfriend, and friends. I am lucky. I just have to realize that becoming "normal" again does take some time. If I continue pushing myself as I am doing now, I will feel even better in a faster time. So that is my hope! I am strong, and I will become stronger :)
Sunday, July 3, 2011
RIP Meds
Today is day 2 of not having the Midodrine!! And I'm doing very well!
Yesterday I stopped taking it and I was able to vacuum 2 levels of my house! Including the stairs!!! It is amazing to me what I am now able to do. I really don't see a huge difference in having the Midodrine and not. It surprises me because I have been on the medication for well over 2 years or so and it has helped me dramatically in the past. Now that my POTS is getting better, I guess there's no need to take it and my body is working well on its own!
Besides the Midodrine, over the years I have taken and can also say Rest in Peace to since I've stopped taking these a long while ago:
-Ambien (for sleep)
-Amitriptyline (for pain)
-Celebrex (for pain)
-Diamox (to decrease eye pressure)
-Fludrocortisone (help treat cerebral salt wasting)
-Indomethacin (for pain)
-Melatonin (for sleep)
-Mestinon (decrease muscle weakness; also for myasthenia gravis treatment when doctors thought I had MG)
-Metoprolol (treat high blood pressure)
-Nadolol (increase blood flow)
-Neurontin (for pain)
-Norco (for severe pain)
-Thermotabs (salt tablets)
-Tylenol 3 (for severe pain)
For the POTsies out there like me, the ones on this list that have helped the most are: Nadolol, Thermotabs (if you don't like eating a lot of salt and would rather take a tablet of it), Midodrine (the life saver of a POTsie), and Fludrocortisone.
I only have a few more to add to this list one day. I'm still taking Provigil (helps with the loss of energy with POTS), Lyrica (helps with pain), Relafen (helps with pain), and iron supplements.
Much love to everyone out there on this wonderful holiday! Have a fantastic weekend!
And to all you POTsies, I wish for you to have an "RIP meds" list of your own very very soon too! Just know there is always hope! There is always a light at the end of the tunnel no matter how dark it may seem now. Leave a comment or e-mail me at sduncan36@gmail.com. I'm always here with an answer and a smile! :)
Yesterday I stopped taking it and I was able to vacuum 2 levels of my house! Including the stairs!!! It is amazing to me what I am now able to do. I really don't see a huge difference in having the Midodrine and not. It surprises me because I have been on the medication for well over 2 years or so and it has helped me dramatically in the past. Now that my POTS is getting better, I guess there's no need to take it and my body is working well on its own!
Besides the Midodrine, over the years I have taken and can also say Rest in Peace to since I've stopped taking these a long while ago:
-Ambien (for sleep)
-Amitriptyline (for pain)
-Celebrex (for pain)
-Diamox (to decrease eye pressure)
-Fludrocortisone (help treat cerebral salt wasting)
-Indomethacin (for pain)
-Melatonin (for sleep)
-Mestinon (decrease muscle weakness; also for myasthenia gravis treatment when doctors thought I had MG)
-Metoprolol (treat high blood pressure)
-Nadolol (increase blood flow)
-Neurontin (for pain)
-Norco (for severe pain)
-Thermotabs (salt tablets)
-Tylenol 3 (for severe pain)
For the POTsies out there like me, the ones on this list that have helped the most are: Nadolol, Thermotabs (if you don't like eating a lot of salt and would rather take a tablet of it), Midodrine (the life saver of a POTsie), and Fludrocortisone.
I only have a few more to add to this list one day. I'm still taking Provigil (helps with the loss of energy with POTS), Lyrica (helps with pain), Relafen (helps with pain), and iron supplements.
Much love to everyone out there on this wonderful holiday! Have a fantastic weekend!
And to all you POTsies, I wish for you to have an "RIP meds" list of your own very very soon too! Just know there is always hope! There is always a light at the end of the tunnel no matter how dark it may seem now. Leave a comment or e-mail me at sduncan36@gmail.com. I'm always here with an answer and a smile! :)
Sunday, June 26, 2011
No More Beta Blockers!
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!!
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 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! :)
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