lavender

My husband and I are very interested in adoption. I have POTS. We're just starting to look into adoption and it sounds like for a lot of agencies and countries, the fact that I have a chronic illness is going to be a problem. Has anyone here been able to adopt with POTS in your medical records? Thanks!

Well, I had my baby last week! She?s perfect and so precious. wish you could all stop in a see her! I have a lot of trouble sleeping due to POTS?I think. Now with my baby to feed at night it?s been extra ROUGH. I?m going to go talk to my doctor about it but he?s new to POTS. So if any of you have some ideas for me of things that help you that I could talk to him about, that would be helpful. I have trouble falling asleep. Usually takes me at least an hour. Then I have trouble staying asleep. If I over do it during the day or am feeling extra POTSy then my fast heart rate makes it impossible to unwind and sleep. Feels like too much adrenalin and my mind races too. The less sleep I get the more POTSy I am the next day?. I take amitriptyline for sleep. I guess it helps some, but not much. I also have ambien that is safe for nursing but I only like to take it when I?m desperate. What has helped you guys? Is there anything I can take or do that would relax my POTSy body and help me fall asleep or stay asleep? Last night Baby did great. She slept for 3 to 4 hour stretches but I was still awake most of the night. So frustrating.

Is there any connection between POTS and Anxiety? Chronic anxiety/depression problems are really common on my Mom's side of the family. MY mom's had a rough winter with anxiety and at times her symptoms are a lot like mine with POTS....insomnia, racing heart, feelings of being way too wired, irritable bowel stuff. I don't think she has POTS and I dont think my POTs is an anxiety problem, but I do wonder if there is a connection. She is now being treated with some meds that are really helping her, especially with sleep. (Remeron and Neurontin) I wonder if those types of meds would help me with my major sleep issues. any thoughts?

So, if my heartrate does go really high durring labor is that hard on Baby? Thanks for all your input. it's helpful.

I'm due to have my first baby in 3-4 weeks! ya! I'm really hoping to be able to have a natural labor and delivery, with as little medical intervention as possible....as long as baby is doing good. So far my pregnancy has gone really good. Super POTSy in the first four months...felt less POTSy than my usual in the second trimester....and still doing good but more POTSy in my last few months. My concern is how my POTS will effect my labor and delivery. I'm a bit worried that the labor will make my heart rate and blood pressure go crazy, and that then the midwife or doctor will be concerned and not allow a natural birth. I'd be currious to hear how others POTS symptoms have responded to labor. Are there things I can do durring labor and even before, to help keep my heartrate from getting super high? I'll try to drink alot of water before and durring. Is there something better I should drink? I also have thigh high stockings I'll wear. My midwifes are very supportive of my wanting to have a natural delivery but have expressed that they are unsure of what to expect because POTS is new to them. They asked me how I think I'd respond to an epidural if we have to go that route. I'm not sure, but I'm a bit concerned that I wouldn't handle it well. Anybody with POTS had an epidural? Thanks!

yeah, what you write sounds like me....I can tell my belly is going to get tight, before it actually does, by the pressure in my head and faster heartrate. I'm glad to hear Adelaide is doing great. I'm sure she's cute cute!

I'm 34ish weeks pregnant with my first little one. I've been having lots of braxton hicks contractions for the last few months. They are not a concern. Here's my question. Right before and durring the contractions my chest feels tight and I feel a lot of pressure in my chest and head...especcially if I'm laying down. It's kinda like if I stand too long, get super POTSy...then what my chest and head feel like when I lay down. Sometimes I feel my face flush durring the contraction. So is all of this normal with a little contraction or is this a POTS reaction? So far my pregnancy has gone super smooth without any real problems. I'm hoping my POTS won't interfere with my labor and delivery. My midwife was a bit surprised how early I started feeling the braxton hicks and how often I get them, but isn't concerned as long as they don't get rhythmic. She said the pressure I notice may be my being more aware of my body because of my POTS and also my body being hypersensative to things. she said the contraction is probably putting a little pressure on the arteries down my back causing the feeling of pressure.

Thanks Maxine. that's helpful info.

they said they'd make sure and work it out for me to see Dr. Grubb next time we're in the area. It was a bit tricky to get an appointment the week of christmas. We're in the area for a short trip. Once I'm done with my pregnancy they'd like me to come back and talk more about trying some treatment options. We didn't do any testing. We mostly just talked through things. I had sent in a really thorough medical history and an explanation of my symptoms. I also gave her some copies of a couple of my own "ttt" that I'd done at home. She felt like all of it showed very clearly that I had POTS. I'd like to do further testing with them for things, but she felt like because of my history and just watching my heartrate durring the appointment that a TTT isnt needed. I also have super bad raynauds with chilblains and some kind of underlaying autoimmune process going on. She was pretty certain it was Ehlers-Danlos, but I'm not sure. Someday I'll have another appointment with Dr. Grubb and talk through more of that and hopefully get a few more answers. I may be able to do a little of that through my doctor in Alaska. For now, I'm thankful for what i learned from Beverly and was super impressed by her.

I finally have a POTS diagnosis! After 20 years of not knowing what was wrong. I had an appointment with Dr. Grubb's nurse a few days ago. She was wonderful. I've been suspecting that POTS is the answer to my medical mystery for the last few years, just from my own research. It was so great to finally get to talk to someone who knows POTS so well and actually understood my illness. pretty big break through for me. I'm thankful. Erin

nauthiz, My face gets all tingly and warm, but only after eating pineapple. I figured it's some kind of reaction to pineapple. My hands get really tingly at times. I haven't ever connected it to having just eaten though. My eyes get red and feel hot and sore when I'm feeling extra gross, or if I'm on a vasodilator or some form of estrogen, but again I havn't connected it to my eating. Sorry this is probably not very helpful for you.

I just started giving support stockings a try. I'm trying 20-30mmHg, waist high. I checked my blood pressure and heart rate with and with out the stockings. Without the stockings I had a 39 beat increase (when going from laying down to standing). It went up to a 59 beat increase after 10 min. After putting on the stockings I had an increase of 25, with an increase of 41 after 10 mins. with and with out the stockings my bp went up. It went up a little less with the stockings. I think the stockings are helping some. Do you think a higher compression would be better? Also the stockings make my toes sore some of the time. Just from the pressure...like wearing tight shoes. Has anyone tried the open toed stockings? Are they ok? Does the open toe cause pooling in your toes? Thanks!

One supplement that really helps me is called Relora. It supports your adrenal glands. I'm a little less tired with Relora. I also sleep better.....it helps me not feel so "wired tired." When I overdo it I get really chilled and stressed totally wasted. Relora helps lessen that feeling some. It also helps me keep from going down hill so fast when I am under stress. I notice my symptoms are worse when I go off Relora.

thanks everyone. Your info and advice is helpful. Last night was horrible! I think I'll come off it for a while, give my body a break and maybe try it again at a quarter dose.

I've been on florinef for a week. (.1mg) I normally have quite a bit of trouble with my sleep, but this week has been extra rough. Since I started florinef, every night I'm waking up after about 4 hours of sleep, exhaused, but wide awake, feeling wired and my heart pounding. I can usually fall back asleep but it takes 2 to 3 hours to get there and then I'm awake again after an hour. I'm wondering if the med is making me wired at night and messing up my sleep. My usual nausia has also been worse this week. I've been needing to eat more often and needing to get up durring the night to eat something to calm the nausia. Are these typical reactions to florinef?

wow this is so cool Rachel!!! Congratulations! How exciting!!!!

so if i were to travel to see a doctor to get a diagnosis of POTS....or rule it out or whatever....who would you say would be the best? who knows their stuff and would listen to my long story?

Thanks you guys so much for your encouragement and understanding. I?ve been on the verge of tears today feeling frustrated. Its probably mostly cuz I?m so drained physically from my appointment yesterday. It?s nice to be able to talk through things and know that maybe I?m not crazy to not feel frustrated. Thankful, you said, ?I think if your doctor had to live in your body for a day, he'd go to the moon to get answers and treatment.? One thing I realize when I talk to my doctors is how poorly they have a accurate picture of my illness. I try to explain things, but there is so many symptoms and it?s been going on for so long that I just cant explain it all. How do you describe the depth of the awful fatigue, or pain that makes no sense? Some times I tell them things and I feel like they finally get it a little better, and then the next time I see them, they act like what I said last time was news to them. I thought about trying to do a poor man TTT with my GP. I have done some on my own with a blood pressure cuff here at home. I took them into him. They very clearly show a 30 (at minimum) increase of ht when I stand up for very long. And my standing hr is always over 110. He didn?t have much of a reaction to it, so I don?t know if it would be very helpful to have him get the numbers himself. Know what I mean. I got the feeling that he wasn?t comfortable being the one to give me a diagnosis. Are there other things that could cause my HR and BP to steadily climb when I stand up? I feel pretty confident that we?ve done a good job of ruling out thyroid, pituitary gland, or adrenal problems? I?ve been tested for Lyme a number of times?and we don?t have ticks in Alaska. I know dehydration is not a problem?I drink tons of water, cuz it helps me some. I?ve never tried any medication used for POTS, other than propranalol cuz my BP goes up when I stand. It brought my BP down a bit but not my HR very much and it didn?t change my symptoms. Usually doctors put me on vasodilators because I have bad raynauds and pernio in my hands and feet. These drugs don?t help me and make me feel SO much sicker?..Something that?s true to POTS. What is Vanderbilt? Thanks guys for your help!

I had an appointment with my GP yesterday to talk about the possibility of POTS. it was not awful, but disapoisting. I had dropped off a couple good articles on POTS a week before, highlighting all the symptoms that apply to my illness....most every POTS symptom. He had read through it by the appointment, which is good, and seemed interested. He said he had heard of POTS before, and hadn't thought of the idea of something autonomic explaining my illness. He wants me to try florinef to see what happens. And when I asked he said i could try support hose. So he definatly didn't dicount the idea of POTS. I guess I was dissapointed because he didn't seem interested in really actively pursueing a diagnosis. He said POTS is an interesting idea to consider, but it has so many symptoms that it's easy to fit my symptoms into it. he said I could do a TTT in Anchorage, but they would just say that I have nothing wrong with my heart and that yes my heart gets fast when I'm upright, but he didn't think it would mean much to them. He thought the doctors running the test wouldn't know anything about POTS, so I couldn't get a diagnosis from them. It frustrates me that my GP, while he listens to me, it really layed back about my illness. POTS fits my symptoms more that any other illness we've looked at over the years and I always have a big jump in my heart rate when I stand up. So I was hoping he'd say, Ok lets really really look at this and do what he can to figure out if this is the answer. I guess I have a hard time letting go of a huge longing to have a NAME for my illness. He didn't think I could find anyone in Alaska who could give me a diagnosis of POTS of know what to do with it. The idea of going to a doctor out of state is overwelming, when I feel so sick and when I've tried that so many times over the years without help. Thanks guys for letting me vent a bit. How do I know how hard to push for the possibility of my illness being POTS? In my mind it fits. but I don't know.....

Mine are usually about the size of tip of my pinky. they get as big as a quarter or larger. they're usually swollen and very red. Sometimes they feel hot, while the skin around them are purple and cold. Like other people, they itch and burn like crazy. A few years ago I started getting nerve damage, so now my worst toes are pretty numb. So now the pain isn't as bad, but the numbness worries me. On my fingers, a lot of times, the chilblains are on my knuckles, I'm not sure why. At times it inflames my whole knuckle. the joint gets sore and really swollen and stiff. My chilblains don't usually turn into open sores, but at times they do. these are usually on the ends of two of my toes that have the worst damage. i think it's just from too many years of getting chilblains and not knowing how to really get them under control. I'm learning, over the years little things I can do to keep them from getting really bad, but I do worry about what shape my fingers and toes will be in by the time I'm older. I'm still in my twentys.

Pernio is the same thing as chilblains. Sorry to be confusing! I'm amazed that both of you, Julie and Thankful, notice that being busy, or stressed or on your feet too much can bring on chilblains. That is very much the case for me. The cold is super hard on my feet, but doctors have a hard time hearing me when I tell them that too much activity, or getting stressed makes my chilblains worse. I could never figure out why the day after a big doctors appointment my hands and feet looked so awful and hurt so bad....it was always so frustrating! I eventually figured out that stress is really hard on them. I can relate to what you said Julie about a certain overwhelmed feeling always brings on trouble for your feet. I recognize that feeling too and can tell I'm in trouble cuz my feet get freezing cold and start to tingle and burn more than usual.

Julie, So do you think your chilblains were related to your POTS? I noticed you also have an unknown connective tissue disease. I know that chilblains can happen in some connective tissue diseases. What have you found to help your hands and feet? I have really bad raynauds with chronic pernio. They CALL it raynauds anyway, but it doesn't really behave like normal raynauds, i don't think. My toes are always purple. It doesn't really come and go with the cold. I have a really hard time not getting chilblains on my toes and fingers, and sometimes along the bottom of my feet too. On my feet the chilblains sometimes turn into nasty open sores. Because of this, and lots of other symptoms, doctors keep looking for a connective tissue disease, but in almost 20 years nothing have been conclusive. I've been talking to Thankful on this forum about her chilblains and POTS. It been helpful to find some people with similar issues.

thanks so much. this helps me a lot.

I've noticed that quite a number of you on this forum have raynauds along with POTS. Is there a connection between the two? If so do you know of anyway articles on the web that talk about raynauds in POTS? I'm gathering info on POTS to take to my doctor to possibly explain my mystery illness. I have a lot of the symptoms of POTS along with pretty bad raynauds and chilblains. I'd like to find any info I can on that. Thanks!!!

One thing I've noticed over the years that really makes all my symptoms worse is estrogen. Birth control, or a couple different supplements I've tried, for various reasons, that act like estrogen (phytoestrogens) make me crash almost instantly. Do others of you experience this with POTS? Any ideas why estrogen might have this effect?