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Does anyone have POTS
Does anyone here have Postural Orthostatic Tachycardia Syndrome. My 13 year old daughter just got diagnosed and I wanted to connect with other people who are going through the same things to see if I can help her a little more in dealing with the devastation of this horrible condition on her.
Thanks, Becky
Thanks, Becky
I just finished typing this huge reply to your post......and lost it! :( Now I have to think about what all it was I was saying. Let me e-mail you to your in-box shortly.....
Lynn:)
Lynn:)
Funny you mention mystery diagnosis because that is what I have been telling my daughter she would end up on that show because we couldn't find anything wrong.
You both have been through the ringer as well. There should be more education for the doctors about this condition.
No we did not do the tilt test. I don't think she will have to even go there because when the nurse was doing the echocardiogram and had her over the wedge with her head lower than her body her HR went to 84 and then she sat her up (that was all not standing) and her HR went to 130. We were lucky that the day she saw the cardiologist she was very symptomatic. She was like a drunk when she walked to the bathroom to change clothes and she passed out on their couch 2 times and both of them saw her asleep.
Still even with the doctor telling me what I already knew he even asked me if Victoria was the queen of the house and did I do everything for her. I feel like doctors think all teenagers are lazy good for nothing kids.
I went through the grocery store the other day and was actually looking for high sodium, but all those things are with other bad stuff and that is the issue. How to get the sodium into a growing girl with hypothyroidism without ballooning her up to way more than she should weigh.
It seemed the dr pepper helped more than the water. The doctor said more water but that makes her tummy hurt and she can't eat. ANd you're right if they are sleeping all day they are getting very little and makes the symptoms worse.
I too questioned myself. I thought am I just overlooking the fact that she is trying to get out of school. But this was my kid who loved school so it didn't make sense. I even asked her if there was a bully bothering her. I even told her she was making it up to try and get her to confess if she was. I do feel bad that I did that, but I was at wits end in trying to figure it out.
If it wasn't for the headache going close to being gone and her standing up, I probably still would be trying to figure it out. Thank God I am a nurse or I still would have missed that information.
I am going to talk to the cardiologist about getting her into cardiac rehab so they can monitor her heartrate while she does some therapy to see if we can recondition like you were saying.
This morning after drinking approximately 100oz yesterday was the best she has looked to me in a long time. SHe actually popped up out of bed and looks in her face better. Go Dr pepper for now. I am glad she is ok to drink the diet because the endocrinologist found her A1C test to be high for a non-diabetic which I found out is that people with autoimmune hypothyroidism have a higher incidence of type1 diabetes and her level showed a glucose intolerance.
But still she feels better. We will take what we can get.
Becky:)
You both have been through the ringer as well. There should be more education for the doctors about this condition.
No we did not do the tilt test. I don't think she will have to even go there because when the nurse was doing the echocardiogram and had her over the wedge with her head lower than her body her HR went to 84 and then she sat her up (that was all not standing) and her HR went to 130. We were lucky that the day she saw the cardiologist she was very symptomatic. She was like a drunk when she walked to the bathroom to change clothes and she passed out on their couch 2 times and both of them saw her asleep.
Still even with the doctor telling me what I already knew he even asked me if Victoria was the queen of the house and did I do everything for her. I feel like doctors think all teenagers are lazy good for nothing kids.
I went through the grocery store the other day and was actually looking for high sodium, but all those things are with other bad stuff and that is the issue. How to get the sodium into a growing girl with hypothyroidism without ballooning her up to way more than she should weigh.
It seemed the dr pepper helped more than the water. The doctor said more water but that makes her tummy hurt and she can't eat. ANd you're right if they are sleeping all day they are getting very little and makes the symptoms worse.
I too questioned myself. I thought am I just overlooking the fact that she is trying to get out of school. But this was my kid who loved school so it didn't make sense. I even asked her if there was a bully bothering her. I even told her she was making it up to try and get her to confess if she was. I do feel bad that I did that, but I was at wits end in trying to figure it out.
If it wasn't for the headache going close to being gone and her standing up, I probably still would be trying to figure it out. Thank God I am a nurse or I still would have missed that information.
I am going to talk to the cardiologist about getting her into cardiac rehab so they can monitor her heartrate while she does some therapy to see if we can recondition like you were saying.
This morning after drinking approximately 100oz yesterday was the best she has looked to me in a long time. SHe actually popped up out of bed and looks in her face better. Go Dr pepper for now. I am glad she is ok to drink the diet because the endocrinologist found her A1C test to be high for a non-diabetic which I found out is that people with autoimmune hypothyroidism have a higher incidence of type1 diabetes and her level showed a glucose intolerance.
But still she feels better. We will take what we can get.
Becky:)
After my daughter was finally diagnosed she saw an episode of Mystery Diagnosis on Discovery Health Channel and it was talking about POTS!!!! I wish there were more information out there.....I work in an imaging facility. Everytime I read a Brain MRI report (especially teenage girls) with headache/dizziness symptoms, I wonder if the patient may have POTS. I wish I could just tell them to check into this disorder.....just in case.
We both felt that the doctors thought it was all in our minds.....it was so very frustrating!!! I felt like maybe they thought I was being a paranoid mom....
The diet Dr. Pepper may have helped in part because of the sodium. I had been buying things HIGH in sodium for a change......tried that for a long time but it didn't seem to help. The frustrating thing is if she is home in bed.....not getting up until 2 or 3 in afternoon she isn't drinking fluids while still asleep! October 3 (the last day she went to school) I picked her up from school late morning and took her to a clinic for IV fluids. It made her feel a little better because she was dehydrated.
She missed so much school the second semester of her junior year.....she was staying late after school up until the very last day making up work.
Was your daughter diagnosed with a tilt table test?
Lynn:)
We both felt that the doctors thought it was all in our minds.....it was so very frustrating!!! I felt like maybe they thought I was being a paranoid mom....
The diet Dr. Pepper may have helped in part because of the sodium. I had been buying things HIGH in sodium for a change......tried that for a long time but it didn't seem to help. The frustrating thing is if she is home in bed.....not getting up until 2 or 3 in afternoon she isn't drinking fluids while still asleep! October 3 (the last day she went to school) I picked her up from school late morning and took her to a clinic for IV fluids. It made her feel a little better because she was dehydrated.
She missed so much school the second semester of her junior year.....she was staying late after school up until the very last day making up work.
Was your daughter diagnosed with a tilt table test?
Lynn:)
Wow! You have been through alot with doctors blowing you off too! I know how frustrating that can be. My daughter was given Imitrex for her migraine (her symptoms had finally progressed to migraines). The first time she took it her headache became MUCH MUCH worse. I made an appointment to go back to the same doctors group the next day. When the MD told her that since she didn't take it at the immediate onset of symptoms that is probably why it didn't help. I could tell by the look on her face that she wanted to punch him. Well, she did take it again when she had another headache and this time it was even worse than the last. I did convince the doctor to give us orders for a Brain MRI. I noticed while waiting for it that her legs were very pink. Brain MRI was negative. I talked to my doctor in same group if she sees 16 year olds and she doesn't so recommended she see their Pediatric Internist. He ordered Brain MRA (specific to arteries) and 24 hour Holter monitor. He also agreed with my plans to take her to a Neuro for the migraines. I got results of Holter Monitor on the way to Neuro...He opened the envelope with results and said that she likely had a heart defect since she had Tachycardia 20% of the time. (This with her laying around for almost the entire time!) Her heart rate got up to 164 a few times..... Neuro is who referred us to Cardiologist and she has been going to him since. When I took her back for followup in November I told him that she hadn't been to school since beginning of October. I told him I was very concerned and told him that I felt it was the Hyperadrenergic form of POTS. (Prior to her visit I had faxed the information as well as the article with the Drug Table from Dr. Grubbs article. I had also included the list of various symptoms my mom and I had typed up for him.) He then decided that we should admit her to run tests the next day. He planned to get Endocrinologist, Internist, and Neurologist involved. Then the Internist who he had been discussing the case with decided she preferred to run tests in her office as there were specific timelines as to drawing blood/giving injection/drawing blood again at a specific time after injection. She ran tons of tests, Chest x-ray, Thyroid Ultrasound. Everything came back normal, so she wanted to do a sleep study next. Meantime I found information from the woman on this site about how sleep disorders are part of the 'H' form of POTS. She also said Neuro is best to treat this type. Ironically the first Neuro we saw does treat POTS. I sure wish I had known that before as we would probably have gotten better results.
My daughter was tested for Epstein-Barr virus and was negative. We couldn't pinpoint her symptoms to having followed any type of virus or anything. It was only recently that my mom and I started talking about various symptoms we have had and realized that we likely do have it also....but in a much milder version.
I would give ANYTHING to make her have her life back.....she has to so limit what she does and not overdo it. She knows that if she pushes herself she will 'pay for it later' in feeling lousy for awhile.
One thing that is recommended is reconditioning. We are going to get an exercise bike (the type that you have a backrest to lean on). Just going for a walk or using a treadmill can help.....strengthening the calves. Also strengthening the abdomen can help.
I was going to tell you something else.....my brain is exhausted I guess.....will post when I think of it again.
:)
My daughter was tested for Epstein-Barr virus and was negative. We couldn't pinpoint her symptoms to having followed any type of virus or anything. It was only recently that my mom and I started talking about various symptoms we have had and realized that we likely do have it also....but in a much milder version.
I would give ANYTHING to make her have her life back.....she has to so limit what she does and not overdo it. She knows that if she pushes herself she will 'pay for it later' in feeling lousy for awhile.
One thing that is recommended is reconditioning. We are going to get an exercise bike (the type that you have a backrest to lean on). Just going for a walk or using a treadmill can help.....strengthening the calves. Also strengthening the abdomen can help.
I was going to tell you something else.....my brain is exhausted I guess.....will post when I think of it again.
:)
First thanks for such an informative post. For my daughter, this whole thing started after a "mono like virus" in October of 07. She was sick for 6 weeks with this mono type virus, strep throat, and bronchitis. After she was supposed to be better she was falling asleep for 12 hours a day and falling asleep in school. At that time she was tested for hypothyroidism and her tsh was 8. She was put on levothyroxine and had slight improvement. She went back to school after being on homebound and had many absences due to headache, sore throat, stomach ache, fatigue, etc.
She went to her endocrinologist in February and was told her symptoms were more severe than her level indicated and we should look into therapy. (funny thing was prior to the virus she had not even seen a doctor for over a year for any illness.) March and April come along and she starts to feel a little better. Since she missed basketball for the second year she decided to go out for track. Second day she is coughing her head off and is off track. She was more fatigued again and falling asleep in school. Doctor doesn't know what to do and just keeps saying thyroid causing it.
May comes along and she is missing at least 2 days per week of school due to fatigue, headache, general crappy feeling. Falling asleep in school again. We had paid for her Washington, DC trip but I wouldn't let her go because she was so fatigued.
June comes along and she still is no better so I take her to an allergist/immunologist. At this point I am thinking it is an immunological thing because she just is so fatigued. He does allergy testing and says she is allergic to cats, trees, grasses, and mold. She gets put on allergy shots and seems to start to feel a little better, but around that time another bout of headache, fatigue sends us back to md who once again does a strep test(she has same symptoms with strep) negative but finds out her Vitamin D level is 11 (way deficient) She is put on vitamin d and summer continues. The thing about summer was most of the time she stayed home and played on computer or watched tv so less symptoms.
August comes around and back to school.. Within 2 weeks she is falling asleep at school again. Back to md thyroid level 5 (high normal) so he ups her meds and back to school. Starts gym and within 2 days is coughing nonstop so back to allergist during one of the shot days. He says exercise induced asthma and gives her inhaler.
Well, back to school she goes and does decent through september but misses days due to fatigue, headache, etc. October comes around and at the beginning the whole family gets laryngitis. The rest of us recover but she is back to falling asleep in band playing her clarinet and headache starts everyday when she is in band.
Go to new endocrinologist who says falling asleep is not thyroid but narcolepsy and does blood work and sends her on.
Middle of October she has already missed 18 days of school. She cannot stay awake and is feeling worse. Her headache is every day now and is not going away.
Back to pediatrician who says her headache is not as bad as she puts it and that sends her over the edge. She cried all day because he wouldn't believe her. Allergist office says no shots because it will make a headache worse.
Md gives her immitrex after 4 or 5 visits and I give it to her along with Lortab and she tells me headache almost gone and she stands up. CLue to me that this might have something to do with blood pressure.
So I start taking bp and pulse and find out that her HR goes up to 130-160 when she stands and she is getting more dizzy, more fatigued, severe headache. So I do this for a couple of days and think I finally find the answer. Back to Md with results and he BLOWS ME OFF!!!!!!!!!!!!!!!!!!!!!!Says she is dehydrated push fluids. So I push fluids and no improvement.
SO now I take her to the er because she is crying with her headache. CT normal, blood work normal, but ct showed ? spot. Orders MRI. GO back to md and get mri. He gets a consult with a pediatric neuro in Feb of 09. Still no answer and she feels crappy.
I am still watching HR and still getting the same numbers. And I hear an ectopic beat on my stethescope. So I take her back to the er and they finally catch the tachycardia on ecg. So we finally are on our way to the diagnosis.
Sorry for the long story, but to answer you, I have thought since October of 07 that something wasn't right about that virus that she had for 6 weeks. The mono was negative but the cbc showed a shift for 6 weeks.
My beautiful child was completely healthy prior to that virus and has suffered since and has been blown off by her doctor for a long time now. He finally mentioned CFS last visit to him. But cardiologist said (why should she have cfs- she should be full of energy and so he is on the right track).
Today she had 84 oz of liquid and says the symptoms are less today than they have been in weeks. She hasn't even pushed the heart monitor once today for symptoms. Crazy as it sound but her entire liquid today was diet dr pepper. I hate to let her have that much pop, but it made her feel better than in a long time.
The thing with me is I just don't see how she will be able to do school and keep up with the liquid consumption she has to do and stay up and moving. Even feeling better her sum activity today was watching tv or playing on the computer. Anything beyond that is too much.
At least she finally has someone besides me believing her. She thought everyone thought it was in her head and she was just crazy. Now everyone knows she is not.
Thanks for reading my lengthy post. I am going to check out the adrenergic stuff you were talking about and I look forward to getting to know you. Maybe Victoria and your daughter can email each other and have someone to talk to .
Becky
She went to her endocrinologist in February and was told her symptoms were more severe than her level indicated and we should look into therapy. (funny thing was prior to the virus she had not even seen a doctor for over a year for any illness.) March and April come along and she starts to feel a little better. Since she missed basketball for the second year she decided to go out for track. Second day she is coughing her head off and is off track. She was more fatigued again and falling asleep in school. Doctor doesn't know what to do and just keeps saying thyroid causing it.
May comes along and she is missing at least 2 days per week of school due to fatigue, headache, general crappy feeling. Falling asleep in school again. We had paid for her Washington, DC trip but I wouldn't let her go because she was so fatigued.
June comes along and she still is no better so I take her to an allergist/immunologist. At this point I am thinking it is an immunological thing because she just is so fatigued. He does allergy testing and says she is allergic to cats, trees, grasses, and mold. She gets put on allergy shots and seems to start to feel a little better, but around that time another bout of headache, fatigue sends us back to md who once again does a strep test(she has same symptoms with strep) negative but finds out her Vitamin D level is 11 (way deficient) She is put on vitamin d and summer continues. The thing about summer was most of the time she stayed home and played on computer or watched tv so less symptoms.
August comes around and back to school.. Within 2 weeks she is falling asleep at school again. Back to md thyroid level 5 (high normal) so he ups her meds and back to school. Starts gym and within 2 days is coughing nonstop so back to allergist during one of the shot days. He says exercise induced asthma and gives her inhaler.
Well, back to school she goes and does decent through september but misses days due to fatigue, headache, etc. October comes around and at the beginning the whole family gets laryngitis. The rest of us recover but she is back to falling asleep in band playing her clarinet and headache starts everyday when she is in band.
Go to new endocrinologist who says falling asleep is not thyroid but narcolepsy and does blood work and sends her on.
Middle of October she has already missed 18 days of school. She cannot stay awake and is feeling worse. Her headache is every day now and is not going away.
Back to pediatrician who says her headache is not as bad as she puts it and that sends her over the edge. She cried all day because he wouldn't believe her. Allergist office says no shots because it will make a headache worse.
Md gives her immitrex after 4 or 5 visits and I give it to her along with Lortab and she tells me headache almost gone and she stands up. CLue to me that this might have something to do with blood pressure.
So I start taking bp and pulse and find out that her HR goes up to 130-160 when she stands and she is getting more dizzy, more fatigued, severe headache. So I do this for a couple of days and think I finally find the answer. Back to Md with results and he BLOWS ME OFF!!!!!!!!!!!!!!!!!!!!!!Says she is dehydrated push fluids. So I push fluids and no improvement.
SO now I take her to the er because she is crying with her headache. CT normal, blood work normal, but ct showed ? spot. Orders MRI. GO back to md and get mri. He gets a consult with a pediatric neuro in Feb of 09. Still no answer and she feels crappy.
I am still watching HR and still getting the same numbers. And I hear an ectopic beat on my stethescope. So I take her back to the er and they finally catch the tachycardia on ecg. So we finally are on our way to the diagnosis.
Sorry for the long story, but to answer you, I have thought since October of 07 that something wasn't right about that virus that she had for 6 weeks. The mono was negative but the cbc showed a shift for 6 weeks.
My beautiful child was completely healthy prior to that virus and has suffered since and has been blown off by her doctor for a long time now. He finally mentioned CFS last visit to him. But cardiologist said (why should she have cfs- she should be full of energy and so he is on the right track).
Today she had 84 oz of liquid and says the symptoms are less today than they have been in weeks. She hasn't even pushed the heart monitor once today for symptoms. Crazy as it sound but her entire liquid today was diet dr pepper. I hate to let her have that much pop, but it made her feel better than in a long time.
The thing with me is I just don't see how she will be able to do school and keep up with the liquid consumption she has to do and stay up and moving. Even feeling better her sum activity today was watching tv or playing on the computer. Anything beyond that is too much.
At least she finally has someone besides me believing her. She thought everyone thought it was in her head and she was just crazy. Now everyone knows she is not.
Thanks for reading my lengthy post. I am going to check out the adrenergic stuff you were talking about and I look forward to getting to know you. Maybe Victoria and your daughter can email each other and have someone to talk to .
Becky
I forgot to ask......do they think that she had a virus that set this into motion? Was it a gradual onset of symptoms? These things can help to determine which type as well.
I just noticed your other post about allergies. I did read that it is important for people with POTS to keep their allergies under control as this helps with symptoms.
My mom and I believe that we too have POTS and that my daughter's type is the hereditary type. (Ours has never been to the extreme in symptoms that my daughter experiences.) My mom takes sudafed every morning.....has for many years. We didn't relate our various symptoms we have had for many years to POTS. Only recently put two and two together. Sudafed is on a list of meds that can be helpful for POTS.
My daughter has tried increased sodium, fluids, florinef, midodrine, metoprolol, and ritalin. Fluids have only really helped in keeping her hydrated......none of the others have helped in her case and as the chart by Dr. Grubb shows they don't help with the Hyperadrenergic form of POTS.
She is now taking Cymbalta as this form also often results in low seratonin levels. This of course is the last thing they need when they are already feeling so crummy and frustrated with missing school/activities/friends, etc., etc. At least it helps with that. Birth control pills also can help to increase blood volume and we are trying that as well.
I will let you know what the Neuro tells us Tuesday....in case your daughter's is also the 'H' type.
best of luck....I know what you are going through and it does just break my heart to see kids going through this....you just have to keep researching as much as you can and push doctor's to try something else if what you are doing is not helping.
Lynn:)
I just noticed your other post about allergies. I did read that it is important for people with POTS to keep their allergies under control as this helps with symptoms.
My mom and I believe that we too have POTS and that my daughter's type is the hereditary type. (Ours has never been to the extreme in symptoms that my daughter experiences.) My mom takes sudafed every morning.....has for many years. We didn't relate our various symptoms we have had for many years to POTS. Only recently put two and two together. Sudafed is on a list of meds that can be helpful for POTS.
My daughter has tried increased sodium, fluids, florinef, midodrine, metoprolol, and ritalin. Fluids have only really helped in keeping her hydrated......none of the others have helped in her case and as the chart by Dr. Grubb shows they don't help with the Hyperadrenergic form of POTS.
She is now taking Cymbalta as this form also often results in low seratonin levels. This of course is the last thing they need when they are already feeling so crummy and frustrated with missing school/activities/friends, etc., etc. At least it helps with that. Birth control pills also can help to increase blood volume and we are trying that as well.
I will let you know what the Neuro tells us Tuesday....in case your daughter's is also the 'H' type.
best of luck....I know what you are going through and it does just break my heart to see kids going through this....you just have to keep researching as much as you can and push doctor's to try something else if what you are doing is not helping.
Lynn:)
First I would like to say I am sorry for what your daughter is going through. This can be such a difficult disorder. From what I have read sometimes when symptoms develop during the teenage years they do eventually diminish although that depends on the type of POTS.
My 17 year old daughter was diagnosed almost a year ago. Her symptoms started 1 1/2 years ago and she was finally diagnosed by tilt table test last February. There is a dysautonomia forum here that has some discussions about POTS.
Here are a couple of good websites for information:
http://www.dinet.org/
http://www.pediatricnetwork.org/booklet/page16.htm
I also recommend doing an internet search for Dr. Blair Grubb. He has some great articles. One that I found posted in October has a table that lists different medications and other treatments and whether they are helpful for different types of POTS. (There are subgroups of POTS.) I just read something else he posted that they now believe there are even 2 different subgroups of the Hyperadrenergic form of POTS. Only about 10% of people with POTS have the Hyperadrenergic form.
I have come to believe that my daughter has the Hyperadrenergic form of POTS. A very helpful person on this site told me that this form of POTS often includes sleep disorders. She also told me that a Neurologist is generally more helpful in treating this form than a Cardiologist. My daughter just underwent a sleep study and is scheduled to see a Neurologist on Tuesday. I am hopeful that he has some recommendations to help her. She is a senior in high school and is now unable to even go to school. She is on a homebound program now.
The internet (and this site) are your best bet....don't give up on finding answers.....and don't be surprised that doctors seem to know little about this disorder. Hopefully your daughter's doctor is helpful....if not don't be afraid to push for trying new treatments. I have printed articles and given them to my daughter's cardiologist as well as internist. Doctors are just not at all familiar with this disorder.
Best of luck to you and please keep me posted.
Lynn:)
My 17 year old daughter was diagnosed almost a year ago. Her symptoms started 1 1/2 years ago and she was finally diagnosed by tilt table test last February. There is a dysautonomia forum here that has some discussions about POTS.
Here are a couple of good websites for information:
http://www.dinet.org/
http://www.pediatricnetwork.org/booklet/page16.htm
I also recommend doing an internet search for Dr. Blair Grubb. He has some great articles. One that I found posted in October has a table that lists different medications and other treatments and whether they are helpful for different types of POTS. (There are subgroups of POTS.) I just read something else he posted that they now believe there are even 2 different subgroups of the Hyperadrenergic form of POTS. Only about 10% of people with POTS have the Hyperadrenergic form.
I have come to believe that my daughter has the Hyperadrenergic form of POTS. A very helpful person on this site told me that this form of POTS often includes sleep disorders. She also told me that a Neurologist is generally more helpful in treating this form than a Cardiologist. My daughter just underwent a sleep study and is scheduled to see a Neurologist on Tuesday. I am hopeful that he has some recommendations to help her. She is a senior in high school and is now unable to even go to school. She is on a homebound program now.
The internet (and this site) are your best bet....don't give up on finding answers.....and don't be surprised that doctors seem to know little about this disorder. Hopefully your daughter's doctor is helpful....if not don't be afraid to push for trying new treatments. I have printed articles and given them to my daughter's cardiologist as well as internist. Doctors are just not at all familiar with this disorder.
Best of luck to you and please keep me posted.
Lynn:)
Zach,
Thank you for your blessing. I don't know how bad other people's conditions are but she is pretty awful. Her heart rate monitor on the 24 hour one caught 2 episodes of atrial fib, 4 hours of tachycardia with the highest rate of 171. Her average HR was 94, but that included a 61 at 4 am.
So far when she drinks around 80 ounces of liquid with the florinef, she is less symptomatic, but less than that and she is extremely dizzy, chest tightness, increase headache and severe fatigue when she sits or stands for any length of time. She was actually passing out in the car or in the chair if she was up for any time.
Right now we have her on the month long monitor and so far there have been several times that the protocol have led them to send in the report immediately upon receiving the reading. I am waiting on the docs permission so they will tell me what the rate and rhythm is.
Her life has stopped as she knows it. She is on homebound from school and can last 2 hours with the teacher before the fatigue really sets in. She was in the band at school and first chair clarinet. She really misses her friends and for the first time in 2 plus months she felt ok to go to the movies, but she slacked on her drinking liquids(it sounds awful to say drinking without putting liquid there) and it took her 4 days to go back and she had horrible symptoms during that time.
The worst is that this diagnosis comes after finding out she has hypothyroidism and allergies and then this. She tells me that she feels like her whole world has changed over night and all I can do is agree with her because she is right. It will be nice to hear how others are doing so I can pass this along to her. She is in 8th grade and was so looking forward to the next few years and now she is just dreading them because she knows marching band is off limits and so is so many other things, like her basketball, etc.
It hurts to see her suffer so much and not be able to take it away and make her feel better.
Anyway thanks for listening to a mom vent.
Becky
Thank you for your blessing. I don't know how bad other people's conditions are but she is pretty awful. Her heart rate monitor on the 24 hour one caught 2 episodes of atrial fib, 4 hours of tachycardia with the highest rate of 171. Her average HR was 94, but that included a 61 at 4 am.
So far when she drinks around 80 ounces of liquid with the florinef, she is less symptomatic, but less than that and she is extremely dizzy, chest tightness, increase headache and severe fatigue when she sits or stands for any length of time. She was actually passing out in the car or in the chair if she was up for any time.
Right now we have her on the month long monitor and so far there have been several times that the protocol have led them to send in the report immediately upon receiving the reading. I am waiting on the docs permission so they will tell me what the rate and rhythm is.
Her life has stopped as she knows it. She is on homebound from school and can last 2 hours with the teacher before the fatigue really sets in. She was in the band at school and first chair clarinet. She really misses her friends and for the first time in 2 plus months she felt ok to go to the movies, but she slacked on her drinking liquids(it sounds awful to say drinking without putting liquid there) and it took her 4 days to go back and she had horrible symptoms during that time.
The worst is that this diagnosis comes after finding out she has hypothyroidism and allergies and then this. She tells me that she feels like her whole world has changed over night and all I can do is agree with her because she is right. It will be nice to hear how others are doing so I can pass this along to her. She is in 8th grade and was so looking forward to the next few years and now she is just dreading them because she knows marching band is off limits and so is so many other things, like her basketball, etc.
It hurts to see her suffer so much and not be able to take it away and make her feel better.
Anyway thanks for listening to a mom vent.
Becky
Sorry to hear about your daughters diagnosis. I think there are a few members in this forum that have been disagnosed with POTS. I'm recently new to here, so I'm not exactly sure who they are. How bad does your daughter have POTS? I pray it's not a real bad case, or develops into a more severe case. I'm sure she has lots of anxiety about this. There are many great individuals here that will be able to help her.
Good Luck and God Bless.. Zach
Good Luck and God Bless.. Zach
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