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Post by kluski on Apr 7, 2024 20:18:57 GMT
Please tell me there’s hope for my dd. I joined the fb page but goodness, it is more scary than helpful. We were in the hospital last night as her elevated heart rate woke her. She couldn’t stop shaking. It was like the fever shakes.
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Post by dewryce on Apr 7, 2024 20:43:15 GMT
I’m sorry for the diagnosis. I am almost 100% certain that pantsonfire and/or one of her children do, but I’m wrong a lot and have a terrible memory. Tagging her just in case.
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Post by littlemama on Apr 7, 2024 20:43:39 GMT
pantsonfire can you help here? I "think" you or a family member have POTS if Im not mistaken
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Post by littlemama on Apr 7, 2024 20:44:09 GMT
I’m sorry for the diagnosis. I am almost 100% certain that pantsonfire and/or one of her children do, but I’m wrong a lot and have a terrible memory. Tagging her just in case. Well, we must have the same terrible memory (at the same moment) 😂
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Post by dewryce on Apr 7, 2024 20:46:20 GMT
I’m sorry for the diagnosis. I am almost 100% certain that pantsonfire and/or one of her children do, but I’m wrong a lot and have a terrible memory. Tagging her just in case. Well, we must have the same terrible memory (at the same moment) 😂 That makes me feel better, safety in numbers
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pantsonfire
Pearl Clutcher
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Jun 19, 2022 16:48:04 GMT
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Post by pantsonfire on Apr 7, 2024 21:04:01 GMT
Hi, it's me, I'm the POTSIE, it's me 😁
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pantsonfire
Pearl Clutcher
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Post by pantsonfire on Apr 7, 2024 21:04:42 GMT
Please tell me there’s hope for my dd. I joined the fb page but goodness, it is more scary than helpful. We were in the hospital last night as her elevated heart rate woke her. She couldn’t stop shaking. It was like the fever shakes. Ask any questions! I can come back in a bit an share dd and my story with POTS/Dysautonomia
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Post by Patter on Apr 7, 2024 21:58:56 GMT
My daughter also has POTS. She has had it for 13 years. She knows what to do to control symptoms as well as her meds. She absolutely cannot take showers in the morning. That will cause her to pass out. She has to have them late in the day. Also, lots of fluids, compression, exercise, etc. She sees a physician at the Dysautonomia Clinic at Duke. Sorry your daughter has it also. Feel free to ask questions. I am sure pantsonfire and I can help.
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pantsonfire
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Post by pantsonfire on Apr 7, 2024 23:52:30 GMT
Dd was diagnosed 11 years ago and I was diagnosed 6 years ago.
For myself, making sure I drink at least 90oz of water a day (120oz in summer heat), severely limit caffeine, have enough salt, sit and rest after walking a bit, move while standing and limit standing, reduce stress, sit in POTSIE positions, and taking a bath have really helped my symptoms.
I, like dd, have Dysautonomia and POTS.
I have a long list if new food allergies.
Thankfully I, and dd, do not need to be on any cardiac meds.
I did try Propranolol before the actual diagnosis of POTS and it made things worse so then I was given another med to help with propranolol symptoms which then gave other side effects.
Once diagnosed, Cardiology said they try really hard to not give propranolol anymore because of the need to stack meds.
I myself can sleep flat.
Dd however needs to sleep with her head up a bit and sometimes her knees at an angle with pillows. This helps with blood flow which then reduces POTS at night.
We both also drink a lot of water before bed and have a salt snack. I also keep 30 oz of water at bedside (dd keeps 20oz) to drink during the time I am in bed resting, if I wake up, and to drink first thing when I wake up.
I will slowly sit up in bed, feet crossed, and guzzle down the water. Usually 20oz. Then I start my bath.
I take warm baths. Dd and I can not shower. Or we have bad POTS episode.
Cont below...
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pantsonfire
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Post by pantsonfire on Apr 7, 2024 23:56:47 GMT
When we sit, we have our legs up. If we sit too long with feet flat in normal position, we get tachycardia.
I am saving up to get the POTS/ADD/ADHD/EDS office chair. It's where you can cross your legs or have them bent up.
I always have water with me. As well as a salty snack.
When out walking a lot, at like say the zoo or a museum, I enjoy a section. Then sit and have water and salt. Relax. Then move on. Same for dd.
Because of the Dysautonomia, we have personal fans in our areas.
For dd and I, summer and winter are the worst seasons. The heat and cold trigger us.
Illness is also a trigger.
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pantsonfire
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Post by pantsonfire on Apr 8, 2024 0:04:51 GMT
As far as management, our cardiologists, allergist immunologist, and genetics team advise the following for a POTS attack:
Lay upright.
Drink water. Try to get 30-40oz
Have pickle juice.
Have salty snack or take salt pill.
Relax.
If after an hour our HR has not gone down, get the UC or ER.
Once the HR is down, we are to take it easy and rest. Limit getting up and down. Limit driving. Limit activity.
If we faint at anytime, we go right to UC or ER.
Our max HR is 140. If we are over that max its get to ER asap. Below that, manage at home unless it doesn't go down.
Only a few times has dd's been 150-180.
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pantsonfire
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Post by pantsonfire on Apr 8, 2024 0:14:02 GMT
The worst part of POTS and Dysautonomia is knowing that you have a limit and can't do things status quo anymore.
It's so important to listen to your body. And constantly drink water. I always have water next to me and drink every few minutes.
It's a lifestyle change for sure but we'll worth it.
I have small tachycardia events here and there but the major ones are few and far between. The last one was Dec when I overdid it cleaning while bending and getting up and down. It knocked me out for almost 2 days.
Dd has a wheelchair we use for long distance and when she needs to stand a long time.
We are looking to get a powered one or scooter to help with independent life and work and college. Due to her EDS she csn not manually roll one.
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pantsonfire
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Post by pantsonfire on Apr 8, 2024 0:15:33 GMT
For me the worst part has been the dang allergies.
For dd, it was not being able to run. She loved to run but had to stop. And choir too. Choir is so bad for POTSIE people. Even with accommodations, she still got super tachycardia. 😔
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leahbear1
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Jul 20, 2015 22:32:31 GMT
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Post by leahbear1 on Apr 8, 2024 3:25:21 GMT
I have 2 family members with POTS. I’m also a nurse and have noticed many more patients have this diagnosis in the past 5-8 years. It can be scary but it is very manageable.
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Post by flanz on Apr 8, 2024 4:27:02 GMT
It's wonderful to see you sharing your immense knowledge and experience pantsonfire and thank you to those of you who have offered help as well. It's what we're all about. Best of luck to all of you dealing with this. xox
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pantsonfire
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Post by pantsonfire on Apr 8, 2024 6:12:25 GMT
I forgot to mention...
Periods. Periods make POTS symptoms worse.
Dd went on BCP a year after her first period. She was 14 and it was the best decision ever.
She would have horrible periods that woukd last 8 days and she would be so weak and ill. It also caused anemia.
She is on the pill for 3 months, then has a cycle. She only gets 4 a year.
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Post by donnab on Apr 8, 2024 12:02:56 GMT
My daughter also has POTS along with a host of other conditions (MCAS, Ehlers Danlos, Fibromyalgia, Avascular Necrosis in knees) some of which I probably don't remember. She is 27 and is recovered from Anorexia. I'm not sure if these autoimmune conditions came about from her anorexia or if some are a results of long covid. It's strange that one of her friends who also recovered from anorexia has some of the exact same conditions.
Anyway-I remember being so afraid when I would hear her pass out in the bathroom in the middle of the night. She would pass out a couple times and we would take her to the hospital and they could never find anything wrong with her. It was so frustrating. Her heart rate was super high and she was always lightheaded-even when she was eating.
She has finally found a doctor at the Mayo Center that listens to her and her symtoms and is going in today for her first of many infusions for POTS. Hopefully this will help her.
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Post by sabrinae on Apr 8, 2024 13:32:29 GMT
My daughter was diagnosed 2ish years ago. It is manageable but it does take trial and error to figure out what works. My daughter is on fludrocortisone which is a steroid that targets the kidneys to help retain water to increase blood volume. She also uses birth control pills - her cycle greatly impacted her symptoms. Birth control has been the single biggest help to regulate symptoms. She drinks at least a gallon of water a day. She uses Vitassium twice a day to help her get enough salt. She drinks 16 ounces of electrolytes before she even gets out of bed in the morning with her first dose of Vitassium and gets up slowly. Showers are a big trigger for symptoms so she takes cool showers and only at night so she has time to recuperate before doing anything. My daughters heart rate will routinely hit the 170s and even get into the 190s. Her Drs haven’t been concerned about that. Even when it stays elevated for extended periods. We also don’t go to the ER when she passes out unless symptoms persist and she needs iv fluids. Although, she hasn’t passed out in more than 6 months.
Compression helps - abdominal compression is actually best but not the most comfortable. My daughter has an assortment of socks and her favorite are compression leggings. She carries extra salt tablets, fast chew Vitassium, electrolyte powders and salty snacks with her along with water. Her favorite electrolytes are drip drop and LMNT. LMNT are very high sodium - 1000 mg a pack. She usually does one on 24-32 ounces of water or 2 drip drop to the same amount which gives her about 700 mg.
If you can find a POTS clinic it’s worth it to drive to one. We’re currently moving her to the Cleveland Clinic which is a four hour one way drive for us but her cardiologist had a heart attack and Childrens closed the POTS clinic. We were already driving 2 hours one way for it.
Illness, routine changes and sometimes nothing will trigger symptoms. My daughter is learning to pace herself and plan out what she can do in a week without killing herself. She hates it but will use a wheelchair if we are somewhere that requires a lot of walking. She will walk some and use the chair so she can do more. If it’s hot she Carrie’s and uses a personal fan that hangs around her neck. It looks almost like a set of big headphones.
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Post by sabrinae on Apr 8, 2024 13:35:00 GMT
Fortunately research into POTS has increased - mainly because it’s really common with long COVID. But, many Drs are still assholes about it and blow you off. Finding good Drs is key. It’s also worth looking to see if she has any other autoimmune issues going on. My daughter has hyper mobility spectrum disorder which affects her connective tissue through out her body.
Make sure they do thorough blood panels that also look at vitamin deficiencies. Vitamin D is almost always an issue. B vitamins are frequently an issue as well.
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Post by mom2rjcr on Apr 8, 2024 14:11:25 GMT
My cardiologist thinks I have POTS. I have passed out several times recently. One of the times I hit my head on the floor and got a concussion. Another time, I fell and broke my ankle.
Currently I am on a halter monitor for the next 2 weeks.
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pantsonfire
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Post by pantsonfire on Apr 8, 2024 14:33:44 GMT
My cardiologist thinks I have POTS. I have passed out several times recently. One of the times I hit my head on the floor and got a concussion. Another time, I fell and broke my ankle. Currently I am on a halter monitor for the next 2 weeks. Did Cardiology do the poor man's tilt table test? You sit with the BP cuff on and it's tested. Then you stand and it's tested. Then sit and tested. Then lay and tested. And then lay to sit and lay to stand. Dd and I have it done everything we see Cardiology.
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Post by mom2rjcr on Apr 8, 2024 17:08:15 GMT
My cardiologist thinks I have POTS. I have passed out several times recently. One of the times I hit my head on the floor and got a concussion. Another time, I fell and broke my ankle. Currently I am on a halter monitor for the next 2 weeks. Did Cardiology do the poor man's tilt table test? You sit with the BP cuff on and it's tested. Then you stand and it's tested. Then sit and tested. Then lay and tested. And then lay to sit and lay to stand. Dd and I have it done everything we see Cardiology. Yes, they did the tilt table test. My doctor also gave me a new medication to help with the low blood pressure when I get up.
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Post by kluski on Apr 11, 2024 0:26:44 GMT
Sorry to post and run. We have had a bad few days and my dd has been my main focus. I appreciate everyone’s input. pantsonfire , I can’t thank you enough for taking the time to share such thorough information. We have been to the er, twice, and have had multiple episodes since Thursday. Before that, literally not much more than an elevated heart rate over the past few years. I’ll be back once we get this under control. Again, I appreciate everyone sharing and support.
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RosieKat
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Post by RosieKat on Apr 11, 2024 1:16:07 GMT
My daughter has a couple of friends who have it, and it has helped them several times to have someone around them who is aware of the condition. Now, she is more medically aware than most, but still, if your DD has a couple of friends who might be willing to be "trained" to be aware of symptoms, that might help her some at school and when she's away from you. I know my DD has been able to help friends avoid fainting, etc. just be being a little more tuned in than she might have been as a typical teen.
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Post by dizzycheermom on Apr 11, 2024 1:37:06 GMT
My daughter has POTS and hEDS. I am sick so this will be the quick version but happy to chat!
In high school suddenly had chronic body pain and pots symptoms. Took 9 mos to diagnose. We found that we were going to the ER once a month and as soon as they gave a bag of fluids she was feeling a lot better. Pediatric cardiologist agreed to try saline therapy. She had 2 picc lines and then a port. She just got the port removed last summer when it broke during a ct with contrast. She has been battling 9 years but went to nursing school and had a baby last year. It has been fairly managed the last few years with her only doing the saline every couple of months. Pregnancy was not great and ended with pre eclampsia, heart failure and an emergency c section. But managing symptoms with medication again since she doesn't have the port any more. She was never able to drink enough water or electrolytes to manage without the saline therapy. With the port she competed on a cheer team again 2 years ago and went to worlds and is on a hip hop team this year and going to worlds again.
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Post by kluski on Apr 14, 2024 13:16:42 GMT
pantsonfire , if the doctor does the poor man test, will it always cause the blood pressure to drop or at least fluctuate? Update…I have determined that this recent week long flair was a reaction to medicine. Because she was developing other symptoms, they added on a second medicine. I highly encouraged her to stop both medicines (thankfully we have a good relationship and she trusts me) (We also checked with dr how to stop the meds) She is back to herself.
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pantsonfire
Pearl Clutcher
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Post by pantsonfire on Apr 14, 2024 13:26:44 GMT
pantsonfire , if the doctor does the poor man test, will it always cause the blood pressure to drop or at least fluctuate? Update…I have determined that this recent week long flair was a reaction to medicine. Because she was developing other symptoms, they added on a second medicine. I highly encouraged her to stop both medicines (thankfully we have a good relationship and she trusts me) (We also checked with dr how to stop the meds) She is back to herself. It is a good indication and it does. There isnt always a big change. Sometimes it is minimal, or our HR will skyrocket up but our BP will only slightly change. However, our Holter monitors always show tachycardia events. And yes meds can cause an increase in POTS. DD had to get off of an anxiety medication Guafacine and pain medication for nerve pain Gabapentin. Both are known to trigger POTS. We had a bit of a scuffle between Cardiology and her metabolic team. They were pushing gabapentin and Cardiology was like get her off now. We had to slowly wean off but it made a huge difference.
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Post by dewryce on Apr 14, 2024 14:40:32 GMT
When y’all were initially looking into what could be wrong, do you remember other things they were considering? I have several autoimmune disorders (fibro, hypermobile joints not sure about EDS, hashimotos, psoriasis and maybe PsA, doctors have conflicting opinions on that. Anyway, I have serious issues with showers and heat and humidity. I have to have the door open, fan on, 1/3rd of the curtain open, cold water right next to the shower and only use lukewarm water. And I still have a hard time and often have to stick my head out of the shower to breathe and sometimes get out and sit on the toilet. I e fainted in 80 degree but humid weather and EMS did all of the usual checks. I actually fainted twice in one day while lying down which got me a quick visit to a cardiologist but I wore a halter monitor and my report didn’t show anything. I have also checked my heart rate upon standing and it wasn’t over a 30 or 40 bpm difference. So my guess is not POTS. I have a drs appt (rheumatologist) in a couple of months, and I’m hoping to come armed with questions but have no clue what else I should be reading about.
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pantsonfire
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Post by pantsonfire on Apr 14, 2024 15:28:37 GMT
When y’all were initially looking into what could be wrong, do you remember other things they were considering? I have several autoimmune disorders (fibro, hypermobile joints not sure about EDS, hashimotos, psoriasis and maybe PsA, doctors have conflicting opinions on that. Anyway, I have serious issues with showers and heat and humidity. I have to have the door open, fan on, 1/3rd of the curtain open, cold water right next to the shower and only use lukewarm water. And I still have a hard time and often have to stick my head out of the shower to breathe and sometimes get out and sit on the toilet. I e fainted in 80 degree but humid weather and EMS did all of the usual checks. I actually fainted twice in one day while lying down which got me a quick visit to a cardiologist but I wore a halter monitor and my report didn’t show anything. I have also checked my heart rate upon standing and it wasn’t over a 30 or 40 bpm difference. So my guess is not POTS. I have a drs appt (rheumatologist) in a couple of months, and I’m hoping to come armed with questions but have no clue what else I should be reading about. Heat syncope? I have a good friend who does not have POTS but has similar diagnosis as you as well as others and the same triggers with heat. AI disorders cause our bodies to act differently for sure.
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Post by scrapmaven on Apr 14, 2024 15:33:06 GMT
dewryce , it's common for POTS and hEDS to go together. Both are products of dysautonomia. In my case, I have POTS, but don't have hEDS, but you can have one w/o the other. I'm sorry for all of you who suffer will chronic illness or chronic pain.
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