Hey all, I recently added some symptoms to the Dysautonomia Symptom list (There are so many I'm sorry! But the list is more accurate now!)
Also i looked at the "What is POTS" link on the Dysautonomia Connection, and I looked at our description and the first half of the page was not accurate, so I re-wrote it based on the information given at the Dysautonomia Connection (Which uses the Mayo Clinic definition of POTS). I quoted my sources with links and I apologize for not noticing or fixing the page earlier!
-Logan.
Friday, July 6, 2012
Thursday, July 5, 2012
Cardiologists are so smart that they are stupid.
Wow, what a week! Last (Thursday?) I was in the ER for my shortness of breath, chest pain, and palpitations. They did an EKG and an x-ray and those came back normal. They sent me home and told me to come back to see the cardiologist there immediately in the morning to do an echocardiogram. They were worried about my aorta possibly being enlarged and or Mitral Valve Prolapse. Those doctors had me kind of worried. My echo from December was perfect, and usually those types of things don't come on that quickly, so it didn't exactly make much sense. I was pretty sure it was the dysautonomia. The next day I went to see the cardiologist who they told me to see. My family and I were all sleep deprived and almost ran out of gas getting there. They put us with a cardiologist who specializes with pregnant women whose babies have heart defects inside the womb! That man noticed that I had been to that facility for an echocardiogram two years ago and that one was fine. He sent me home without doing a thing!! NOTHING. If he knew anything about connective tissue disorders he would know that two years can make a big difference (he didn't know I actually had an echo in December somewhere else). I was so aggravated because he didn't even attempt to help me. He said that I needed to see the other cardiologist that he works with. They wouldn't see me back until August!!! If something was truly an emergency with my heart then y'all might as well start planning my funeral because I'd be dead by then. Before I went to the ER I was told to there if my symptoms persisted because my usual cardiologist could not get me in. Since nobody did anything, I went on in to my original appointment with my usual cardiologist. I told him that the ER suggested that I have an echocardiogram done and he refused to do one. Every time I go into his office he does an echo and the one time someone else suggests that he do one then he won't do it! He did give me a beta blocker. I have not started it yet because my blood pressure has been so low and I hear that it can lower it. Fainting is not something I necessarily want to do right now, so we are waiting. I hope that it works when I do choose to take it. I asked my cardiologist if it could possibly make me faint and all he said was this: If you think you are going to faint, then you are going to faint. Basically the summary of this post is that I have had it with cardiologists lol.
Today I went to the movie theater and saw the new Spiderman movie and it was great! I didn't get a migraine either. :)
Michelle K's Question: What medications are you on for POTS/Dysautonomia?
I take Doxepin. It is used to treat insomnia and pain. Other than that I am on nothing for dysautonomia.
I take Doxepin. It is used to treat insomnia and pain. Other than that I am on nothing for dysautonomia.
Rhianne's Question: How much independence do you have?
What is independence?? Hahaha. I was more independent when I was 10. :|
What is independence?? Hahaha. I was more independent when I was 10. :|
Hannah's Question: How do you do in the sun?
The majority of the time not very good. My pulse increases tremendously. I sometimes get a rash too, but that is from Mast Cell problems.
The majority of the time not very good. My pulse increases tremendously. I sometimes get a rash too, but that is from Mast Cell problems.
My Question: How often do you feel like you cannot breathe?
I hope everyone is having a decent week. God bless. xx
-Cheyanne
Wednesday, July 4, 2012
short post
Today was Christine's day to post again, but i was not even able to talk to her today so I don't know how she is doing, Christine if you read this i hope you are ok!
I'm not feeling well at all, the last maybe week i have been getting progressively weak. I have rare moments when i can walk around for a minute or two, but most of today i could not walk around without collapsing so i stayed in bed.
Also my POTS was acting up bad today, i had noticeable tachycardia probably 8 out of every 10 times i stood up.
But i got to speak with one of my rare true and blue friends today : D, and i got to watch a sunset from my bed room window. So my day was not entirely sucky : P
I'm too zombified for questions, I apologize!
-Logan
I'm not feeling well at all, the last maybe week i have been getting progressively weak. I have rare moments when i can walk around for a minute or two, but most of today i could not walk around without collapsing so i stayed in bed.
Also my POTS was acting up bad today, i had noticeable tachycardia probably 8 out of every 10 times i stood up.
But i got to speak with one of my rare true and blue friends today : D, and i got to watch a sunset from my bed room window. So my day was not entirely sucky : P
I'm too zombified for questions, I apologize!
-Logan
Monday, July 2, 2012
Day Switch!
Hey guys, I am now a Monday poster (I, meaning Hannah!), Rhianne and I switched days because Fridays are better with her schedule.
I have still been on the roller-coaster of POTSy land- but aren't we all? :P. I can't remember if I told y'all but my cardiologist switched things up with my meds. He has me on Mestinon and changed my dosage around on my Midodrine (I will write more on that with Michelle K's question), and I tried the Mestinon at the full dosage he prescribed for three days and I couldn't take it. So now (a week or two later- I can't remember lol) I am trying it at 1/4 the dose and am going to gradually increase it. I hadn't even discussed it with him but in the process of getting other questions answered over phone he had already said to half it. So, instead I quartered it, hopefully I won't even need to go to the full dose. He put me on it for GI symptoms, so I'm assuming he's thinking gastroparesis? But he said it will also help my heart.
My pulse has been bothering me lately because it's gone as low as 50, and that scares me and makes me uncomfortable. I find I am more comfortable around 70, and until I had the mess with the Propranolol (I'm assuming my body hasn't reset itself yet, around 3 or 4 years ago with my first time ever taking Midodrine it set me off with high blood pressure, and then I have had high and low blood pressure since), however, I am still getting higher pulses frequently. I also am on a thirty event monitor since I have been having so many irregular beat sensations. I only have like nine days left and I think I am just finally learning how to use it properly (haha).
Let's go on to the questions, shall we?
Miranda asked... Do you have a geographic tongue? I think I remember us talking about this forever ago, haha, but I do not. I hope things go well with looking into colleges, you go girl!
Michelle R asked... what are y'alls plans for the summer? I am hanging out with family and trying to study and learn things on my own and now I am starting back up on the online School of Biblical Evangelism, its been a while since I've done much with it, so it feels good to be working on it again. Yay for no deadlines! We are also possibly doing a beach vacation with my brother and his family. Another Yay! Congrats on graduating! I loved graduating, so exciting, I hope it has been just a sweet for you, though I know it's bitter sweet!
Logan asked... Does anyone else avoid eye contact during muscle jerks? Y'know, I can't really say to be honest, I don't remember! But I can definitely understand why that was awkward, I think I just kind of hope the person didn't notice Lol. I hope you start feeling better hun and that things improve with your GI!
Cheyanne asked... What part of your head are your headaches/migraines located in most of the time? They are usually the top and back, and can either be tight muscles, burn, or be like nausea in the head. I also suffer from vertigo time to time. And... Do y'all get random chest pain and palpitations like that? Yes, I know it's scary! I could write a long post just on what happened about a year ago that seemed to set off PVC's for me. For me, chest pain, PVC's, and heart burn all seem to run together, at least the feelings of the symptoms can be difficult to decipher which is which. I think it'd be good to see your cardiologist, he might do what mine have done for me and put you on a monitor to see what exactly is happening <3. I plan on looking up the types of EDS and your other diagnoses girlie, hang in there! I wish I had some knowledge on them to lend words of wisdom. <3.
Michelle K asked... What medications are you on for POTS/Dysautonomia and what dose? I am on Lexapro 20mg, and right now I'm adjusting the dose at times because of my heart rate going lower than what's comfortable, and switching between 20mg and 10mg, and I am not recommending that to anyone, I'm doing it on my own out of what I feel to be necessity to keep my pulse from going to low. I am also on Midodrine, 5mg twice a day and 10mg three times a day, so 40mg total a day. I am also on generic Mestinon, right now I am starting with 15mg, working my way up to that three times a day, taken before each meal, then if all goes well, I'll add in a 1/2, etc. He wants me to be eventually be taking 60mg, three times a day, so a total of 120mg. I'm sorry to hear things aren't going so well with you lately, and also with your job, I know that must be difficult emotionally with your career having a lot of importance to you <3
Rhianne asked... why did we watch her video? And I started watching it whenever you posted it ages ago, but never finished and then tonight I listened and watched while talking to you, pretty cool huh? And because you are Rhianne and you are awesome and Australian. ;) Also, how much independence do you have? I feel like I am slowly gaining it back, but I still do not have much. I really don't go anyway without one of my parents except once in a while. However, I am starting to do things like walk our long driveway by myself, just typically letting someone know I'm doing it in case I don't make it back up, haha. Things like that- is how my independence mostly works. I'm independent, based on my dependence on my parents- I can do mild things independently, with their supervision or awareness of it. I hope things improve for you girlie <3
Erin, I don't think you had an "official" question, though you did ask if any of us have had a bone marrow test done, and I wish I could give some advice but I have not <3. Wow girl, bless your heart you certainly have had a lot going on. I'm glad your surgery is done and over with and resolved everything it needed too. I hope you can get things figured out to with the MCAD <3. I am so proud of you with your schooling accomplishments! GO ERIN! You have certainly put up quite a fight with your illnesses to accomplish your dream, how amazing!
My question... How do you do when you are in the sun? Sometimes I love sitting out in the sun, it just feels so good, but it can give me a headache, and there was a time where if I just stepped outside in the summer it was like *whoosh* blood pooling, so I'm curious, do you guys avoid the sun? Sit in it for some D? Etc.
Thanks :)
Until next time... <3
~Hannah
I have still been on the roller-coaster of POTSy land- but aren't we all? :P. I can't remember if I told y'all but my cardiologist switched things up with my meds. He has me on Mestinon and changed my dosage around on my Midodrine (I will write more on that with Michelle K's question), and I tried the Mestinon at the full dosage he prescribed for three days and I couldn't take it. So now (a week or two later- I can't remember lol) I am trying it at 1/4 the dose and am going to gradually increase it. I hadn't even discussed it with him but in the process of getting other questions answered over phone he had already said to half it. So, instead I quartered it, hopefully I won't even need to go to the full dose. He put me on it for GI symptoms, so I'm assuming he's thinking gastroparesis? But he said it will also help my heart.
My pulse has been bothering me lately because it's gone as low as 50, and that scares me and makes me uncomfortable. I find I am more comfortable around 70, and until I had the mess with the Propranolol (I'm assuming my body hasn't reset itself yet, around 3 or 4 years ago with my first time ever taking Midodrine it set me off with high blood pressure, and then I have had high and low blood pressure since), however, I am still getting higher pulses frequently. I also am on a thirty event monitor since I have been having so many irregular beat sensations. I only have like nine days left and I think I am just finally learning how to use it properly (haha).
Let's go on to the questions, shall we?
Miranda asked... Do you have a geographic tongue? I think I remember us talking about this forever ago, haha, but I do not. I hope things go well with looking into colleges, you go girl!
Michelle R asked... what are y'alls plans for the summer? I am hanging out with family and trying to study and learn things on my own and now I am starting back up on the online School of Biblical Evangelism, its been a while since I've done much with it, so it feels good to be working on it again. Yay for no deadlines! We are also possibly doing a beach vacation with my brother and his family. Another Yay! Congrats on graduating! I loved graduating, so exciting, I hope it has been just a sweet for you, though I know it's bitter sweet!
Logan asked... Does anyone else avoid eye contact during muscle jerks? Y'know, I can't really say to be honest, I don't remember! But I can definitely understand why that was awkward, I think I just kind of hope the person didn't notice Lol. I hope you start feeling better hun and that things improve with your GI!
Cheyanne asked... What part of your head are your headaches/migraines located in most of the time? They are usually the top and back, and can either be tight muscles, burn, or be like nausea in the head. I also suffer from vertigo time to time. And... Do y'all get random chest pain and palpitations like that? Yes, I know it's scary! I could write a long post just on what happened about a year ago that seemed to set off PVC's for me. For me, chest pain, PVC's, and heart burn all seem to run together, at least the feelings of the symptoms can be difficult to decipher which is which. I think it'd be good to see your cardiologist, he might do what mine have done for me and put you on a monitor to see what exactly is happening <3. I plan on looking up the types of EDS and your other diagnoses girlie, hang in there! I wish I had some knowledge on them to lend words of wisdom. <3.
Michelle K asked... What medications are you on for POTS/Dysautonomia and what dose? I am on Lexapro 20mg, and right now I'm adjusting the dose at times because of my heart rate going lower than what's comfortable, and switching between 20mg and 10mg, and I am not recommending that to anyone, I'm doing it on my own out of what I feel to be necessity to keep my pulse from going to low. I am also on Midodrine, 5mg twice a day and 10mg three times a day, so 40mg total a day. I am also on generic Mestinon, right now I am starting with 15mg, working my way up to that three times a day, taken before each meal, then if all goes well, I'll add in a 1/2, etc. He wants me to be eventually be taking 60mg, three times a day, so a total of 120mg. I'm sorry to hear things aren't going so well with you lately, and also with your job, I know that must be difficult emotionally with your career having a lot of importance to you <3
Rhianne asked... why did we watch her video? And I started watching it whenever you posted it ages ago, but never finished and then tonight I listened and watched while talking to you, pretty cool huh? And because you are Rhianne and you are awesome and Australian. ;) Also, how much independence do you have? I feel like I am slowly gaining it back, but I still do not have much. I really don't go anyway without one of my parents except once in a while. However, I am starting to do things like walk our long driveway by myself, just typically letting someone know I'm doing it in case I don't make it back up, haha. Things like that- is how my independence mostly works. I'm independent, based on my dependence on my parents- I can do mild things independently, with their supervision or awareness of it. I hope things improve for you girlie <3
Erin, I don't think you had an "official" question, though you did ask if any of us have had a bone marrow test done, and I wish I could give some advice but I have not <3. Wow girl, bless your heart you certainly have had a lot going on. I'm glad your surgery is done and over with and resolved everything it needed too. I hope you can get things figured out to with the MCAD <3. I am so proud of you with your schooling accomplishments! GO ERIN! You have certainly put up quite a fight with your illnesses to accomplish your dream, how amazing!
My question... How do you do when you are in the sun? Sometimes I love sitting out in the sun, it just feels so good, but it can give me a headache, and there was a time where if I just stepped outside in the summer it was like *whoosh* blood pooling, so I'm curious, do you guys avoid the sun? Sit in it for some D? Etc.
Thanks :)
Until next time... <3
~Hannah
Sunday, July 1, 2012
Why Hello There Friends, It's Been Awhile...
A lot has happened in the past two months or so. I have graduated college and started my masters. Crazy? Just a little bit. I study, go to class, do homework, and make it through. Somehow. My POTS has been under control and pretty manageable for about 6months now, but other symptoms have just been bothering me more and more lately.
I had surgery in May on my nose. My cartilage was falling(due to EDS), I had a 100% bone spur blocking my nasal cavity, my turbinates (I still am unsure what these are completely) were very enlarged, and I had an icky deviated septum (again, because of EDS). The recovery absolutely sucked for the first week until the tubes were taken out. After any kind of surgery, I get AWFUL jaw/face pain. We finally decided that I have trigeminal (sp?) neuralgia. The only way to get relief is to go to the ER and get IV meds. I will never, ever, have surgery around my face ever again. *Just thinking about it gives me shivers...*
Also, I had a tryptase blood test done to check for MCAD/Systemic Mastocytosis. My levels came back elevated! The next step to officially confirm is to have a bone marrow test done. I chose to wait 4 months to be retested and then decide. I just can't come to term of getting a bone marrow test done. I heard it's pretty painful... has anyone experienced one before? I have had such a strong gut feeling of MCAD for almost 2 years now. Constant running to the bathroom after eating certain foods, but I have no idea of the trigger. Rashes. Chemical sensitivity. Allergic/Sensitive to medicines. Heat rashes.Headaches.headaches.headaches.constantly! GI problems since I was a kiddo.Elevated liver enzymes.Eosinophilia.& many more... I have all these random things, but STILL, I feel yet to have a definitive answer. The list goes on.
Anyways, enough about my health. I will graduate with my masters in a year. ONE year from today to be exactly. Added plus? They are paying for my schooling :) I know I can make it through, I know I can do it, but these added symptoms do suck. I am pretty good at putting on a fake smile and making it through. Aren't we all? I will never give up, I will always persevere through illness, no matter what it may be. We are all strong ladies and I am proud of every one of our accomplishments, no matter how little it may be!
I know that many of you have been having a difficult time lately, but keep your head high. You are so strong! When you think that things can't get any better, there is no where else to look but up :)
Cheyanne: It's good to know you finally got a diagnosis! EDS is NO fun, but it's good to know someone else who can relate :) Take care!!!
Michelle: CONGRATULATIONS GRADUATE!!!
I see we have no posters! Nice to "meet" you Hayden and I think Emily has been posting every now and then? Gosh, I am so lacking!
P.S...Logan, I can't wear those shoes either! I just gave up and gave them to friend -- haha
I am just going to answer the questions I can find...I apologize if I miss any! ...here goes nothing
Does anyone avoid eye contact when they have muscle jerks?
-Honestly, my only muscle jerks are RLS (restless leg syndrome) so I wouldn't know. It sounds awful, I hope they get better!
How much independence do you have?
-I am very independent. The only time I will even ask for assistance from anymore (mind you I am extremely stubborn) is to drive me somewhere if I am too off balance or overstimulated. The only other things I rely on are my lovely stools and occasional show chair ;)
What medicines are you on?
-I am on mestinon 12.5mg (3x daily), atenolol 25mg (1x night), protonix 40mg (2x daily), b12 injections, and others not related to POTS. I have to take VERY low doses as I am very sensitive to medicine.
Do you get chest pain/how often?
-I hate the chest pain. I get it quite frequently and at various times! However, after my nasal surgery, I can breathe!! So that has helped tremendously.
What part of your head do you get headaches/migraines the most?
-headaches are typically around my temples, front of head, and the top of head. When I get migraines (usually 1x-2x a month) the pain radiates all around. With both headaches and migraines I am extremely sensitive to light, noise, smells, anything.
What are your plans for summer?
-GRADUATE SCHOOL. and sleeping :) Plus getting my classroom ready.
Do you have a geographic tongue?
-I have never heard of that. I don't believe so. I get sores, but I don't think I have geographic tongue. Interesting, though!
Have you had a tilt-test?
-Yes, I have. A year after I was first diagnosed through a "poor-man's" tilt-test.
Do you have eye problems?
-I have floaters, whatever that means :/
Have you ever gone to or considered therapy?
-I have not. I have considered it at certain times and think it wouldn't hurt, but personally, I hate the stigma that goes with it from other doctors.
What was your favorite high school memory?
-Oh my. I was always sick and in the hospital in high-school and known as "the sick girl". It sucked. Honestly, I wouldn't have graduated if I was at a public school, I would have missed way too many days. I was able to make things up at the hospital and at home.
When you have a day to yourself, what do you watch a marathon in?
-I love television. It's quite pathetic actually. My favorites include: Say Yes to the Dress (the original version), Gilmore Girls, and The Real Housewives :)
What is your favorite song?
-I feel like a complete nerd admitting this, but I love Girlfriend right now. *please note, I do not like justin bieber, nor do I like any of his other songs*
Happy first day of July!! I hope you all are able to spend some quality time with family/friends on the fourth, even if it's just for a tid bit!
xoxo
Erin
I had surgery in May on my nose. My cartilage was falling(due to EDS), I had a 100% bone spur blocking my nasal cavity, my turbinates (I still am unsure what these are completely) were very enlarged, and I had an icky deviated septum (again, because of EDS). The recovery absolutely sucked for the first week until the tubes were taken out. After any kind of surgery, I get AWFUL jaw/face pain. We finally decided that I have trigeminal (sp?) neuralgia. The only way to get relief is to go to the ER and get IV meds. I will never, ever, have surgery around my face ever again. *Just thinking about it gives me shivers...*
Also, I had a tryptase blood test done to check for MCAD/Systemic Mastocytosis. My levels came back elevated! The next step to officially confirm is to have a bone marrow test done. I chose to wait 4 months to be retested and then decide. I just can't come to term of getting a bone marrow test done. I heard it's pretty painful... has anyone experienced one before? I have had such a strong gut feeling of MCAD for almost 2 years now. Constant running to the bathroom after eating certain foods, but I have no idea of the trigger. Rashes. Chemical sensitivity. Allergic/Sensitive to medicines. Heat rashes.Headaches.headaches.headaches.constantly! GI problems since I was a kiddo.Elevated liver enzymes.Eosinophilia.& many more... I have all these random things, but STILL, I feel yet to have a definitive answer. The list goes on.
Anyways, enough about my health. I will graduate with my masters in a year. ONE year from today to be exactly. Added plus? They are paying for my schooling :) I know I can make it through, I know I can do it, but these added symptoms do suck. I am pretty good at putting on a fake smile and making it through. Aren't we all? I will never give up, I will always persevere through illness, no matter what it may be. We are all strong ladies and I am proud of every one of our accomplishments, no matter how little it may be!
I know that many of you have been having a difficult time lately, but keep your head high. You are so strong! When you think that things can't get any better, there is no where else to look but up :)
Cheyanne: It's good to know you finally got a diagnosis! EDS is NO fun, but it's good to know someone else who can relate :) Take care!!!
Michelle: CONGRATULATIONS GRADUATE!!!
I see we have no posters! Nice to "meet" you Hayden and I think Emily has been posting every now and then? Gosh, I am so lacking!
P.S...Logan, I can't wear those shoes either! I just gave up and gave them to friend -- haha
I am just going to answer the questions I can find...I apologize if I miss any! ...here goes nothing
Does anyone avoid eye contact when they have muscle jerks?
-Honestly, my only muscle jerks are RLS (restless leg syndrome) so I wouldn't know. It sounds awful, I hope they get better!
How much independence do you have?
-I am very independent. The only time I will even ask for assistance from anymore (mind you I am extremely stubborn) is to drive me somewhere if I am too off balance or overstimulated. The only other things I rely on are my lovely stools and occasional show chair ;)
What medicines are you on?
-I am on mestinon 12.5mg (3x daily), atenolol 25mg (1x night), protonix 40mg (2x daily), b12 injections, and others not related to POTS. I have to take VERY low doses as I am very sensitive to medicine.
Do you get chest pain/how often?
-I hate the chest pain. I get it quite frequently and at various times! However, after my nasal surgery, I can breathe!! So that has helped tremendously.
What part of your head do you get headaches/migraines the most?
-headaches are typically around my temples, front of head, and the top of head. When I get migraines (usually 1x-2x a month) the pain radiates all around. With both headaches and migraines I am extremely sensitive to light, noise, smells, anything.
What are your plans for summer?
-GRADUATE SCHOOL. and sleeping :) Plus getting my classroom ready.
Do you have a geographic tongue?
-I have never heard of that. I don't believe so. I get sores, but I don't think I have geographic tongue. Interesting, though!
Have you had a tilt-test?
-Yes, I have. A year after I was first diagnosed through a "poor-man's" tilt-test.
Do you have eye problems?
-I have floaters, whatever that means :/
Have you ever gone to or considered therapy?
-I have not. I have considered it at certain times and think it wouldn't hurt, but personally, I hate the stigma that goes with it from other doctors.
What was your favorite high school memory?
-Oh my. I was always sick and in the hospital in high-school and known as "the sick girl". It sucked. Honestly, I wouldn't have graduated if I was at a public school, I would have missed way too many days. I was able to make things up at the hospital and at home.
When you have a day to yourself, what do you watch a marathon in?
-I love television. It's quite pathetic actually. My favorites include: Say Yes to the Dress (the original version), Gilmore Girls, and The Real Housewives :)
What is your favorite song?
-I feel like a complete nerd admitting this, but I love Girlfriend right now. *please note, I do not like justin bieber, nor do I like any of his other songs*
Happy first day of July!! I hope you all are able to spend some quality time with family/friends on the fourth, even if it's just for a tid bit!
xoxo
Erin
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