erinlia

I didnt realize that the standard diagnostic criteria required a heart rate increase of 40bpm in kids. Thats helpful to know. Thanks. Ill listen to the POTSCast. Ill also talk to her about being careful to drink more. She is not one to like to slow down so Im hoping POTS doesnt become part of her life. thank you both for your thoughts

Ive had POTS since i was a little kid. Not diagnosed til i was an adult. Over the last year my thirteen year old has been complaining daily that she is tired. Its not so bad that it keeps her from playing actively with friends. When i was her age i was very debilitated. I have noticed though that if she has to stand still she lifts one leg and props one foot against the other knee...which is what i do when im standing and feeling POTSy. She also says she is dizzy sometimes. I did a nasa lean test in her at home. I dont feel like it was glaringly obvious pots, but what do you think? Laying down her numbers were 106/60 71. After standing ten mins it was 91/80 99. So not over a thirty point increase in her heart rate, but close. I dont know what is normal for kids this age.

Ok, thanks so much. Hearing what it does and doesnt do for some of you is really helpful.

Ive been trying Pyridostigmine for a month now. I worked up to 60mg, three times a day. I dont really feel like im noticing a difference in how i feel. Maybe its slight, and I'm not noticing it? The first few weeks it seemed like my blood pressure was lower than it should be. The last few days its been back in my more normal range, i think. If pyridostigmine was helpful for you, in what way did you notice it helping? My heart rate is still going up about 30 beats in the first few mins of standing. It would increase more than that if i stood longer and kept testing it, but i have not taken the time. Is a month a long enough time to try it? Im thinking ill go off of it and see what i notice.

I totally get what you are saying. For me i need to wake up at 8:30, get out of bed at nine. Then i sit on the couch and read to my girls til ten. By ten or ten thirty i am SO spend and go back to bed to sleep til noon or so. To be on my feet during that morning time feels like way too much. I also avoid making decisions during that time. It would be super hard for me if i had to change that routine and be more productive during that time, or it i couldnt go back to bed to sleep again. Im not sure what the solution would be without finding a med or something thst made me feel lots better in the morning.

Thanks for this video link. It looks like good info.

I guess ive never looked at sleep disorders. I just assumed sleep issues were part of POTS. Do you guys wake up feeling like you got the sleep you needed??

Yes, id really like to hear from more people on their experience

Is midodrine worth trying for POTS if you have pretty severe raynauds? I see its a vasoconstrictor. Has anyone here, who also has raynauds, been able to use it?

I see there is bits of talk on here about using the stellate ganglion block as POTS treatment. I thought I'd share my experience. I had one done about a month ago, at my doctor's suggestion. They hoped it would really help my POTS. I felt like the first few hours after each injection it MAYBE helped ease symptoms. Its hard to tell. I felt a lot of pressure in my head and my hand on that side was very warm. The pressure in my head felt nice, like I was getting more blood flow when I stood up. By the next day I definitely felt like my usual self. I have not noticed any lasting help from it. It seemed like it may have helped for a few hours, but I cant say for sure. It may have just been that I was running on adrenaline by overdoing it that day with an appointment. I have had POTS for over thirty years. The doctor did say the SGB is more likely to help people who have had POTS for a shorter period. He recommended that I keep coming back and do them again to see if the benefit builds up each time. I'm not sure I can afford to do that. The procedure itself was not bad at all. I dont mind needles. but I would say it was not very uncomfortable and was done quickly. The staff was super nice and interested in POTS, which feels rare to me. It just didn't help. also didn't make things worse....so thats a plus, right!?

Every morning i wake up feeling terrible and very exhausted...like i have not slept good. Have you learned any tricks for improving quality of sleep?

I am the same way, for sure.

Ok yeah, thanks for your thoughts. Thats helpful. Ill try LR. And experiment with time of day and speed

A few months ago i did a saline IV to see if it would offer me any help with POTS symptoms. The IV ran for two hours in early afternoon. For the rest of the day i did feel better! I could lift my arms without feeling dizzy. And the pressure in my head and chest was lifted. I had some energy. The next morning i was back to my normal. Since then ive tried three times to do an at home IV, and run it slower, overnight. I was hoping that running it slower would help me for longer. I used the same amount of fluid, but the at home IVs have not really been helpful at all. Im not noticing a difference in how i feel. So what would the difference be? Any thoughts? My worst time of day is in the morning. My one helpful IV was in the afternoon....maybe it would not have felt as helpful if i had done it in the morning? Maybe i didnt sleep as good with the IV in place?

Thanks Sarah, thats helpful. You asked " have you and your specialist thoroughly explored all the volume expansion/retention options? " I doubt that we have. What are all the options for this?

I tried the saline IV. They were willing to slow it down to one liter in two hours. It did seem like it helped! For that day. I had some energy and didnt feel so much pressure in my chest and head. I could lift my arms without my vision going gray. By the next day i was definitely back to my usual. I really wish i could just buy IV equipment and hook myself up to a saline IV every morning before i get out of bed. It doesnt seem worth paying for the IVs if the goodness doesnt last long. But now that i tasted a few hours of relief I feel frustrated with the constant drain of POTS symptoms. I get so used to the symptoms being normal.

Thanks thats really helpful

I think i could choose between saline and lactated ringers and they give one liter in a half hour appointment. Is one better than the other to try? And should i see if that could be slowed down? It seemed like from a couple posts that IV speed matters for you.

One thing ive never tried for my POTS is a saline IV. We recently had a business open in town where you can request various IV vitamin treatments. It seems like an easy, inexpensive way for me to try a saline IV. any advice?? Should i just do saline and how much? It looks like they offer one liter. Is that enough to test if it will help my POTS, or should i see if they will be willing to do more? Have saline IVs been helpful for you?

interesting! Is there a way I can listen to that conference?

Before I got the diagnosis of POTS, my different Rheumatologists felt my issues were autoimmune. My lab never showed much clear evidence of this. The meds that helped my POTS symptoms more than anything were methotrexate, humira and Plaquenil. I was on Plaquenil for years. It was the most helpful med i ever tried with the least side effects. I've always felt like my POTS is tied to an immune disfunction of some sort. Very interesting to hear that Plaquenil has been helpful for some of you.

thanks Pistol, that's helpful info

how often do you do IV fluids? I've never tried that. What is the dose of your Ritalin? My norm is to get up in the morning and get my girls going on their school and chores then go back to sleep for a couple more hours because i feel so terrible in the morning. My girls think it's normal, ha ha. Maybe Ritalin would be helpful. I saw Dr. Grubb a couple of times. it's been ten years though. I could make that a priority again when we are in that area visiting family.

Yeah i manage symptoms with lots of rest, fluids, salt, avoiding stress, managing my body temp, (avoiding getting cold or hot) not being on my feet too much. and sometimes compression, although I don't like them much and they only help if I can keep from getting too warm in them. I feel like compression just barely takes the edge off for me so i don't bother unless I know I'm going to need to be on my feet longer than usual. I've tried a number of Beta Blockers, and meds to constrict veins. I've also tried Clonidine. I don't remember if I've tired Midodrine specifically. meds that constrict blood vessels are tricky for me because I have severe Raynauds. Some meds I've tried make that a lot worse. SSRI's do help me with sleep. I do take one of those. I don't think i've ever tried Trazodone. I could look into that. I use Magnesium, Taurine and a tiny bit of Progesterone cream (at certain times of the month) to help with sleep issues. I have tried one stimulant med and felt pretty terrible on it, very wired/ tired. I don't think I've tried Ritalin or Modafinil though. I've tried Fludrocortisone. I feel like i tried med after med after med in my teens and twenties. I took a break from it all in my thirties other that an SSRI and my own home remedies. I guess I feel like, is there more I can try that I have not tried? Do I want to risk feeling worse while trying new meds? I'm guessing I would need to come to my doctor with my own research and ideas of things to try since I don't live near a specialist. My blood pressure does go up when I'm standing and then eventually drops. I'm pretty sure I have hyper POTS. Dr. Grubb thought my POTS was likely the type caused by too stretchy of connective tissue, but I'm not sure if that is correct or not.

I've had POTS issues all my life. they became severe at age 9. I finally got a diagnosis from Dr. Grubb when I was 29, after years of doctors and my own research. at that point I was pregnant with my daughter. that pregnancy really really improved my POTS. For the last ten years I have not perused medical care for POTS because it had improved and I dont have medical coverage. POTS symptoms were still a constant issue but not as debilitating as my teens and twenties. I managed it on my own. In the last few years my symptoms have been getting worse and making me more homebound. I live in a small town in Alaska so my doctor options are limited, but i'm wondering if I should start working with one again. In what ways are doctors able to help you with POTS fatigue specifically? If I see a doctor who does not treat POTS in other patients, are there suggestions i could make for tests we could run or meds we might look into? Is it important to know for sure the type of POTS i have? thanks!