When I was first diagnosed (dx) and could no longer attend school, my friends started dropping like flies. I was devastated. I was in so much pain, not just because I was just dx with something strange called POTS aka Dysautonomia but because I had no one to talk to that was my age. I did have 1 friend who stuck by me until after high school graduation but after we graduated, we parted ways. Other then that 1 friend, I was lonely, in pain both emotionally and physically.
My pediatric cardiologist suggested a youth website dedicated just for youth with Dysautonomia. Dysautonomia Youth Network of America (DYNAkids) www.DYNAkids.org . When I signed up I met a bunch of people my age, some younger, and some a little bit older. To this day, although I am no longer a member of DYNA, they are my best friends and I love them with all my heart. They know exactly what I am going through and have been where I have been.
~~~~~~~
Kyli W.- I love meeting you every year at the beach. Meeting you is most defiantly my highlight of the trip. When we are together it is like we are twins! It is amazing when I look back to when we first met and to meeting this past year to see how much progress we have made! The first year we were so, so tired, and the third time we met I got sick half way though and the next day wound up in the ER at the shore! Then this past year, wow! Neither of us got sick, and no ER visits!
You have helped me through so much! You are my best friend! You will always have a special place in my heart.
Shea B.- My late night/early morning texting best friend! Thank you for listening to my problems and giving me advice. I don't know what I would do with out you. I can't wait to meet you someday!!! You have been through so much and I haven't heard you complain once. You handle everything with such grace. I hope we are friends for a long time. I know you feel like you will never feel better, but someday, you will feel better. We have to keep our hopes up! Remember, when you feel down, I am here for you!!
Torin- Thank you for listening and giving advice and keeping my spirits up. You are so kind, funny and I hope to meet you one day! Keep your head held up high. You are a good person, never change who you are. I mean that. There aren't many men out there like you and a woman would be crazy to pass you up!
Katie M.- You have been a wonderful friend since we've gotten to know each other! I hope we can meet as well someday. You have given me so much advice and have helped me calm down when I am upset. Thank you for being such a great friend!! I hope we'll be friends for a long time!
~~~~~~~
If I have not mentioned your name, it is not because I do not count you as a friend. I have a lot of friends who have helped me through a lot! I will add onto this post but for now, the above names are all my energy has allowed me to remember.
Wednesday, October 14, 2009
Saturday, October 10, 2009
30 things...
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Dysautonomia
2. I was diagnosed with it in the year: 2004.
3. But I had symptoms since: My symptoms weren't life changing until 2004 but when I look back, I realize that a lot of things I thought were normal actually weren't. As far back as Elementary school I would wake up extremely dizzy to the point where I missed a lot of school because I was so severely dizzy. My mom and I thought all the dizziness was caused by allergies. As I got older I noticed that I had a very hard time memorizing ballet recital pieces and marching band drills. In school, my grades were slipping because I could not remember a single thing that I had just learned.
4. The biggest adjustment I’ve had to make is: I've had to make many adjustments, but I think the biggest adjustment that I've had to make was adapting to a new way of living and doing some things in a new way.
5. Most people assume: Many people assume that Dysautonomic's are lazy and that is SO not true. Believe me, we would rather be up and about doing things, going places, seeing people, not stuck in bed or on the couch.
6. The hardest part about mornings are: Standing up without feeling like you are about to pass out.
7. My favorite medical TV show is: Just about anything on Discovery Health.
8. A gadget I couldn’t live without is: My cell phone and my laptop.
9. The hardest part about nights is: Feeling like there's still more to do and not the energy to do it.
10. Each day I take __ pills & vitamins: Oh, I don't even want to go there because it's pretty many and I don't like thinking about it really.
11. Regarding alternative treatments I: I have been going to acupuncture and find that it helps with my sleeping and some other little things.
12. If I had to choose between an invisible illness or visible I would choose: Neither! But, if I had to choose, it would visible. I say that because especially when I go to the ER, I get looked at with weird looks because I don't look sick. I'm not oozing blood, I don't have a bone popping out....I look fine and doctors and nurses then believe that I'm there just to get attention.
13. Regarding working and career: Right now I am on SSI but my goal is to get a job someday working people either as an medical aide or RN if I would miraculously recover!
14. People would be surprised to know: I have had a lot of people come to me and tell me that they are surprised and glad that I seem to be able to handle everything with maturity and bravery. I feel that I have matured in many ways since being diagnosed but some people would be surprised to know that I do have periods of times where I cry because I am scared. I'm not always as brave as I look!
15. The hardest thing to accept about my new reality has been: Dysautonomia is so unpredictable so often times I back out of plans because I suddenly become sick. This often times upsets or angers friends or family members.
16. Something I never thought I could do with my illness that I did was: Hang out with friends again!
17. The commercials about my illness: The day I see a commercial about Dysautonomia, I will faint. lol. (Sorry Kyli, I had to use your answer...so cute!)
18. Something I really miss doing since I was diagnosed is: Dancing ballet and being in marching band!!
19. It was really hard to have to give up: Physically going to high school. Having tutors in the home is just not the same.
20. A new hobby I have taken up since my diagnosis is: Collecting spoons because of The Spoon Theory
21. If I could have one day of feeling normal again I would: Do chores that need to be done and that require the most energy....if I'm only going to have 1 day of feeling normal, I might as well use it wisely.
22. My illness has taught me: So, so much. It really has. I've learned that even though someone may not look like they are sick or handicapped, they very well could be and we need to respect them and treat them with respect. Loving people for who they are on the inside and not what they look like on the outside. I think the biggest thing that my illness has taught me is to not be selfish-- to be greatful for what you have and not greedy. Life can be so short and it upsets me when I see people abusing their bodies or making themselves sick....if only they could walk in my shoes........
23. Want to know a secret? I wish I could have met Corrie Ten Boom.
24. But I love it when people: Treat you with kindness and respect. This especially goes for all medical staff.
25. My favorite motto, scripture, quote that gets me through tough times is:
"Lord, make me an instrument of your peace,
Where there is hatred, let me sow love;
where there is injury, pardon;
where there is doubt, faith;
where there is despair, hope;
where there is darkness, light;
where there is sadness, joy;
O Divine Master, grant that I may not so much seek to be consoled as to console;
to be understood as to understand;
to be loved as to love.
For it is in giving that we receive;
it is in pardoning that we are pardoned;
and it is in dying that we are born to eternal life."
"Blessed are the peacemakers,
for they will be called sons of God"
26. When someone is diagnosed I’d like to tell them: It WILL get better. You're stronger than you know.
27. Something that has surprised me about living with an illness is: How different life can be.
28. The nicest thing someone did for me when I wasn’t feeling well was: Understood and didn't get mad at me ending our outing.
29. I’m involved with Invisible Illness Week so: Because ironically invisible illness patients often times find themselves feeling invisible!
30. The fact that you read this list makes me feel: Good!
1. The illness I live with is: Dysautonomia
2. I was diagnosed with it in the year: 2004.
3. But I had symptoms since: My symptoms weren't life changing until 2004 but when I look back, I realize that a lot of things I thought were normal actually weren't. As far back as Elementary school I would wake up extremely dizzy to the point where I missed a lot of school because I was so severely dizzy. My mom and I thought all the dizziness was caused by allergies. As I got older I noticed that I had a very hard time memorizing ballet recital pieces and marching band drills. In school, my grades were slipping because I could not remember a single thing that I had just learned.
4. The biggest adjustment I’ve had to make is: I've had to make many adjustments, but I think the biggest adjustment that I've had to make was adapting to a new way of living and doing some things in a new way.
5. Most people assume: Many people assume that Dysautonomic's are lazy and that is SO not true. Believe me, we would rather be up and about doing things, going places, seeing people, not stuck in bed or on the couch.
6. The hardest part about mornings are: Standing up without feeling like you are about to pass out.
7. My favorite medical TV show is: Just about anything on Discovery Health.
8. A gadget I couldn’t live without is: My cell phone and my laptop.
9. The hardest part about nights is: Feeling like there's still more to do and not the energy to do it.
10. Each day I take __ pills & vitamins: Oh, I don't even want to go there because it's pretty many and I don't like thinking about it really.
11. Regarding alternative treatments I: I have been going to acupuncture and find that it helps with my sleeping and some other little things.
12. If I had to choose between an invisible illness or visible I would choose: Neither! But, if I had to choose, it would visible. I say that because especially when I go to the ER, I get looked at with weird looks because I don't look sick. I'm not oozing blood, I don't have a bone popping out....I look fine and doctors and nurses then believe that I'm there just to get attention.
13. Regarding working and career: Right now I am on SSI but my goal is to get a job someday working people either as an medical aide or RN if I would miraculously recover!
14. People would be surprised to know: I have had a lot of people come to me and tell me that they are surprised and glad that I seem to be able to handle everything with maturity and bravery. I feel that I have matured in many ways since being diagnosed but some people would be surprised to know that I do have periods of times where I cry because I am scared. I'm not always as brave as I look!
15. The hardest thing to accept about my new reality has been: Dysautonomia is so unpredictable so often times I back out of plans because I suddenly become sick. This often times upsets or angers friends or family members.
16. Something I never thought I could do with my illness that I did was: Hang out with friends again!
17. The commercials about my illness: The day I see a commercial about Dysautonomia, I will faint. lol. (Sorry Kyli, I had to use your answer...so cute!)
18. Something I really miss doing since I was diagnosed is: Dancing ballet and being in marching band!!
19. It was really hard to have to give up: Physically going to high school. Having tutors in the home is just not the same.
20. A new hobby I have taken up since my diagnosis is: Collecting spoons because of The Spoon Theory
21. If I could have one day of feeling normal again I would: Do chores that need to be done and that require the most energy....if I'm only going to have 1 day of feeling normal, I might as well use it wisely.
22. My illness has taught me: So, so much. It really has. I've learned that even though someone may not look like they are sick or handicapped, they very well could be and we need to respect them and treat them with respect. Loving people for who they are on the inside and not what they look like on the outside. I think the biggest thing that my illness has taught me is to not be selfish-- to be greatful for what you have and not greedy. Life can be so short and it upsets me when I see people abusing their bodies or making themselves sick....if only they could walk in my shoes........
23. Want to know a secret? I wish I could have met Corrie Ten Boom.
24. But I love it when people: Treat you with kindness and respect. This especially goes for all medical staff.
25. My favorite motto, scripture, quote that gets me through tough times is:
"Lord, make me an instrument of your peace,
Where there is hatred, let me sow love;
where there is injury, pardon;
where there is doubt, faith;
where there is despair, hope;
where there is darkness, light;
where there is sadness, joy;
O Divine Master, grant that I may not so much seek to be consoled as to console;
to be understood as to understand;
to be loved as to love.
For it is in giving that we receive;
it is in pardoning that we are pardoned;
and it is in dying that we are born to eternal life."
"Blessed are the peacemakers,
for they will be called sons of God"
26. When someone is diagnosed I’d like to tell them: It WILL get better. You're stronger than you know.
27. Something that has surprised me about living with an illness is: How different life can be.
28. The nicest thing someone did for me when I wasn’t feeling well was: Understood and didn't get mad at me ending our outing.
29. I’m involved with Invisible Illness Week so: Because ironically invisible illness patients often times find themselves feeling invisible!
30. The fact that you read this list makes me feel: Good!
Wednesday, October 7, 2009
Dysautonomia Awareness Petiton
Hello Everyone,
A group of friends and myself have started a project to raise awareness for Dysautonomia. Below you will find a link to a petition that we have started. It takes a few seconds to fill out and you are done! The second part of our project is then to email different talk show hosts in hopes of appearing on their show and spreading awareness of Dysautonomia. Our petition has over 680 signatures and I hope you too will sign it and pass it on to your family and friends.
http://www.gopetition.com/petitions/dysautonomia-awareness.html
More updates to come on this project.
Thank you!
A group of friends and myself have started a project to raise awareness for Dysautonomia. Below you will find a link to a petition that we have started. It takes a few seconds to fill out and you are done! The second part of our project is then to email different talk show hosts in hopes of appearing on their show and spreading awareness of Dysautonomia. Our petition has over 680 signatures and I hope you too will sign it and pass it on to your family and friends.
http://www.gopetition.com/petitions/dysautonomia-awareness.html
More updates to come on this project.
Thank you!
Understanding Orthostatic Hypotension
Understanding Orthostatic Hypotension
by: Gwendolyn W.
5/22/2008
Orthostatic Intolerance is an umbrella term for several conditions when symptoms worsen in an upright position. The following information explains Neurally Mediated Hypotension (NMH) and Postural Orthostatic Tachycardia Syndrome (POTS) which are two common forms of Orthostatic Hypotension. The medical term for low blood pressure is hypotension and the medical term for an increase in heart rate (HR) is tachycardia.
Understanding POTS:
Postural Orthostatic Tachycardia Syndrome simply means an increased heart rate upon standing. A “healthy” individual has a slight increase in heart rate upon standing by 10-15 beats per minute within 10 minutes. A POTS patient has an increase of heart rate by 30 beats per minute or higher over the first 10 minutes upon standing. POTS is an abnormality in the regulation of heart rate; the heart itself is usually normal. Some POTS patients go onto develop NMH upon standing.
Understanding NMH:
Neurally Mediated Hypotension literally means a drop of blood pressure (BP) in an upright position. It is defined as an drop of systolic (the top number) BP of 25mm HG and is compared the BP of when the patient is laying down. It occurs because too little blood circulates back to the heart and brain.
NMH is also known for these names: the fainting reflex, delayed orthostatic hypotension, neurocardiogenic syncope, vasodepressor syncope, vaso-vagal syncope. The medical term for fainting or passing out is syncope.
Why do upright positions cause problems for these patients?
When a healthy individual stands up, gravity produces approximately 10-15% of his or her blood to settle in the stomach and limbs. This blood pooling means that less blood reaches the brain resulting in lightheadedness, seeing stars, vision tunneling/darkening, and sometimes fainting. For healthy individuals the above symptoms are un-common when standing up because the leg muscles pump blood back up to the heart. Another reason is because one’s body turns on a series of rapid quick reflex motions to make up for the lower amount of blood returning back to the heart upon standing. One’s body releases norepinephrine and epinephrine which is also known as adrenaline. The norepinephrine and epinephrine cause the heart to beat a little quicker and with more force- a feeling which is familiar after exercising or being frightened. This causes blood vessels to constrict (tighten). The end result is more blood returning to the brain and heart. Usually healthy individuals are unaware of the changing reflexes when they stand up.
When someone with NMH or POTS stands up, they tend to pool a larger amount of blood in vessels beneath the heart. Compared to healthy individuals, those with NMH and POTS, more blood tends to settle in the stomach and limbs the longer they are in an upright position. Like we learned earlier the body responds by releasing norepinephrine and epinephrine in an attempt to cause more constriction of the blood vessels. For many reason which all are not very well understood yet, the blood vessels do not respond correctly to the release of norepinephrine and epinephrine. In NMH and POTS patients the blood vessels tend to either constrict or not constrict and sometimes they dilate instead.
In patients with POTS, the result of excessive blood pooling when in an upright position means an increase of their heart rate. With NMH, the result is in the lowering of blood pressure. This is all caused because of a “miscommunication” between the heart and brain-both are usually normal in structure. The heart needs to beat faster to pump blood to the brain to prevent fainting. The brain sends out a message that the heart rate should be slowed down and that the blood vessels should dilate even more. This takes even more blood away from the central part of circulation where it is needed most. It is not clear why people develop NMH and POTS but it may all be from the relationship of the norepinephrine and epinephrine release in the body.
Symptoms of NMH and POTS:
• lightheadedness or a spacey feeling
• dizziness
• fainting/near fainting
• dimming of vision
• nausea or vomiting
• fatigue that can last for days
• exercise intolerance
• muscle aches
• headaches/migraines
• tachycardia
• palpitations
• bradycardia
• weakness
• shakiness
• clamminess
• anxiety
• shortness of breath
• mental confusion such as: brain fog, trouble staying on task, remembering, and finding the right words to say, difficulty concentrating
• chest pain or chest tightness
• Gastrointestinal problems
• sleeping disorders
• lower back pain
• excessive fatigue
• intolerance to heat
• light and noise sensitivity
It has been discovered that there is a large overlap between syndromes of Orthostatic Hypotension and Chronic Fatigue Syndrome (CFS) and Fibromyalgia (FM). Not all patients with NMH or POTS have CFS or FM and not all with CFS or FM have NMH or POTS.
NMH and POTS symptoms that can be triggered by the following:
• standing in long lines
• taking a hot shower
• hot tubs, saunas etc.
• sitting too long
• being in an warm or hot environment
• stressful events
• lack of fluid and salt intake
• eating large meals
• bending down
• blowing up balloons
• vasodilating medications
• drinking alcohol
• caffeine makes some patients feel worse
• bending up and down
• climbing stairs
• giving blood
• singing
How are NMH and POTS diagnosed?
NMH and POTS cannot be detected without a prolonged standing test or tilt table test (ttt). To diagnose POTS a 10 minute test is usually all that is needed. However, to diagnose NMH a longer period of time will be needed.
A tilt table test is not much fun but it is the way to diagnose NMH and POTS. The ttt includes laying down on a table then being strapped down because the table is then raised 70˚so you are basically standing upright. It is best if you are strapped down because the goal of the test is to pass out. Durring the test you are required to stay as still as possible. The tilt table technicians may ask you how you are feeling every once in a while but other then that, you are expected to remain silent. While you are on the tt, they monitor your BP and HR very closely.
What causes NMH and POTS?
At present this answer isn’t very well understood. It is suspected that NMH and POTS are genetic in many patients but that isn’t always the case. There has been no gene yet to be found for patients with NMH but there is a link in patients with POTS who have joint mobility or Ehlers- Danlos Syndrome (EDS). Some patients reported that after being sick with the flu, mononucleosis, or being in a car accident or having surgery that this bring on symptoms. Another suspicion is that
Some researches have noted an overlap in spinal stenosis and Chiari Malformation. We do not know why these conditions cause NMH and POTS but it is being researched.
Most importantly talk to a health care provider who understands NMH and POTS. Sometimes medications are not needed; increasing fluid intake such as drinking Gatorade, Pedialyte, and water and also increasing your salt intake are enough. Others may need to take medications to help control their symptoms.
by: Gwendolyn W.
5/22/2008
Orthostatic Intolerance is an umbrella term for several conditions when symptoms worsen in an upright position. The following information explains Neurally Mediated Hypotension (NMH) and Postural Orthostatic Tachycardia Syndrome (POTS) which are two common forms of Orthostatic Hypotension. The medical term for low blood pressure is hypotension and the medical term for an increase in heart rate (HR) is tachycardia.
Understanding POTS:
Postural Orthostatic Tachycardia Syndrome simply means an increased heart rate upon standing. A “healthy” individual has a slight increase in heart rate upon standing by 10-15 beats per minute within 10 minutes. A POTS patient has an increase of heart rate by 30 beats per minute or higher over the first 10 minutes upon standing. POTS is an abnormality in the regulation of heart rate; the heart itself is usually normal. Some POTS patients go onto develop NMH upon standing.
Understanding NMH:
Neurally Mediated Hypotension literally means a drop of blood pressure (BP) in an upright position. It is defined as an drop of systolic (the top number) BP of 25mm HG and is compared the BP of when the patient is laying down. It occurs because too little blood circulates back to the heart and brain.
NMH is also known for these names: the fainting reflex, delayed orthostatic hypotension, neurocardiogenic syncope, vasodepressor syncope, vaso-vagal syncope. The medical term for fainting or passing out is syncope.
Why do upright positions cause problems for these patients?
When a healthy individual stands up, gravity produces approximately 10-15% of his or her blood to settle in the stomach and limbs. This blood pooling means that less blood reaches the brain resulting in lightheadedness, seeing stars, vision tunneling/darkening, and sometimes fainting. For healthy individuals the above symptoms are un-common when standing up because the leg muscles pump blood back up to the heart. Another reason is because one’s body turns on a series of rapid quick reflex motions to make up for the lower amount of blood returning back to the heart upon standing. One’s body releases norepinephrine and epinephrine which is also known as adrenaline. The norepinephrine and epinephrine cause the heart to beat a little quicker and with more force- a feeling which is familiar after exercising or being frightened. This causes blood vessels to constrict (tighten). The end result is more blood returning to the brain and heart. Usually healthy individuals are unaware of the changing reflexes when they stand up.
When someone with NMH or POTS stands up, they tend to pool a larger amount of blood in vessels beneath the heart. Compared to healthy individuals, those with NMH and POTS, more blood tends to settle in the stomach and limbs the longer they are in an upright position. Like we learned earlier the body responds by releasing norepinephrine and epinephrine in an attempt to cause more constriction of the blood vessels. For many reason which all are not very well understood yet, the blood vessels do not respond correctly to the release of norepinephrine and epinephrine. In NMH and POTS patients the blood vessels tend to either constrict or not constrict and sometimes they dilate instead.
In patients with POTS, the result of excessive blood pooling when in an upright position means an increase of their heart rate. With NMH, the result is in the lowering of blood pressure. This is all caused because of a “miscommunication” between the heart and brain-both are usually normal in structure. The heart needs to beat faster to pump blood to the brain to prevent fainting. The brain sends out a message that the heart rate should be slowed down and that the blood vessels should dilate even more. This takes even more blood away from the central part of circulation where it is needed most. It is not clear why people develop NMH and POTS but it may all be from the relationship of the norepinephrine and epinephrine release in the body.
Symptoms of NMH and POTS:
• lightheadedness or a spacey feeling
• dizziness
• fainting/near fainting
• dimming of vision
• nausea or vomiting
• fatigue that can last for days
• exercise intolerance
• muscle aches
• headaches/migraines
• tachycardia
• palpitations
• bradycardia
• weakness
• shakiness
• clamminess
• anxiety
• shortness of breath
• mental confusion such as: brain fog, trouble staying on task, remembering, and finding the right words to say, difficulty concentrating
• chest pain or chest tightness
• Gastrointestinal problems
• sleeping disorders
• lower back pain
• excessive fatigue
• intolerance to heat
• light and noise sensitivity
It has been discovered that there is a large overlap between syndromes of Orthostatic Hypotension and Chronic Fatigue Syndrome (CFS) and Fibromyalgia (FM). Not all patients with NMH or POTS have CFS or FM and not all with CFS or FM have NMH or POTS.
NMH and POTS symptoms that can be triggered by the following:
• standing in long lines
• taking a hot shower
• hot tubs, saunas etc.
• sitting too long
• being in an warm or hot environment
• stressful events
• lack of fluid and salt intake
• eating large meals
• bending down
• blowing up balloons
• vasodilating medications
• drinking alcohol
• caffeine makes some patients feel worse
• bending up and down
• climbing stairs
• giving blood
• singing
How are NMH and POTS diagnosed?
NMH and POTS cannot be detected without a prolonged standing test or tilt table test (ttt). To diagnose POTS a 10 minute test is usually all that is needed. However, to diagnose NMH a longer period of time will be needed.
A tilt table test is not much fun but it is the way to diagnose NMH and POTS. The ttt includes laying down on a table then being strapped down because the table is then raised 70˚so you are basically standing upright. It is best if you are strapped down because the goal of the test is to pass out. Durring the test you are required to stay as still as possible. The tilt table technicians may ask you how you are feeling every once in a while but other then that, you are expected to remain silent. While you are on the tt, they monitor your BP and HR very closely.
What causes NMH and POTS?
At present this answer isn’t very well understood. It is suspected that NMH and POTS are genetic in many patients but that isn’t always the case. There has been no gene yet to be found for patients with NMH but there is a link in patients with POTS who have joint mobility or Ehlers- Danlos Syndrome (EDS). Some patients reported that after being sick with the flu, mononucleosis, or being in a car accident or having surgery that this bring on symptoms. Another suspicion is that
Some researches have noted an overlap in spinal stenosis and Chiari Malformation. We do not know why these conditions cause NMH and POTS but it is being researched.
Most importantly talk to a health care provider who understands NMH and POTS. Sometimes medications are not needed; increasing fluid intake such as drinking Gatorade, Pedialyte, and water and also increasing your salt intake are enough. Others may need to take medications to help control their symptoms.
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