bequich

I just wanted to ask for advice on what types of questions to ask, what doctor to see? I will be going the week of August 4th. I have been dealing with POTS for a very long time and no treatment seems to help. What test should I ask for? Thank you in advance

I mostly go for a run (although not in a while, I tend to feel very faint), swimming, aerobics. Have not been consistent with any. I will definitely look into a recumbent bike. My biggest fear is getting worse from over doing it, I feel like such a burden as it is. I also worry about the muscle aches not sure I can handle more pain, I have a high pain tolerance. It's so hard to discuss my symptoms with people around me, they just don't understand..."you look great" comments tend to get me more depressed.

I'm not sure what type of pots I have but from what I have read I think I have hypovolemic pots. Dr. Has not mentioned mestinon, I will ask. Melatonin makes me feel very ill. Loomeymom- I'm so sorry to hear about your son, that must be so tough, nothing worse than seeing your child ill. I know exercise is helpful, but I can't, I have tried even just adding a couple of minutes a day. It leaves me so ill that I can't function. Running after a very busy 18 month old is non stop, I can't sit for more than a couple of minutes at a time because she is always on the go, so I feel like I'm getting some exercise, but just feel like I'm pushing too much. Not sure if it makes sense, I'm at a loss, I was doin so much better. It's so frustrating to go backwards. Thank you all for your responses

I am not a fan of ambien either, but nothing else helps me sleep, do you have any suggestions on what could help me sleep? I recently had blood work and the only thing that was low was my vitamin D, which has been low for a while. I changed my diet, limit sugars (sweets are my weakness so have not cut them out completely but have reduced), eat non processed foods, cut back on starches too. I am open to any suggestions. Im at a desperate point. Neurologist did not have much to add to cardiologist.

I forgot, I also take vitamin D.

Thanks for the replies. I am non stop all day, I go up and down stairs, take care of my very active 18 month old all day and do laundry and house work, but the doctor wants me to add more exercise to my day, with what I do already by 7pm I can barely walk and just want to crawl in a ball and cry. We had to enroll my 3 year old in daycare 4 days a week because I can't keep up with him, and my 7 year old is either in school or camp. The brain fog is overwhelming, I'm so irritable all the time. I'm in constant pain and do nauseous that I just hate my life. My husband works 50-60 hours a week and then comes home to help with everything, runs all the errands, does groceries, just everything. I'm basically home 95% of the week. I hate that instead of looking forward to weekends with the kids I feel overwhelmed and stressed (husband works most weekends). I feel like because I can't rest when I know my body needs it, I get worse... Thanks for letting me vent

HI all, I have posted a few times here, Im feeling so frustrated and depressed. I have had pots for 5 years, was diagnosed last summer. Since being diagnosed I have been taking Midodrine, atenol, ambient (cant sleep at all without it), gabapartin (severe muscle aches) and do 1 liter of IV fluids everyday. I was doing much better once I started with the saline solution (iv fluids), I started them around November of last year. But in the last month my symptoms have gotten so bad, the mental fog, the headaches, nausea, heat intolerance, exhaustion, muscle aches (just all of the symptoms) have gotten worse. I see a cardiologist who knows a lot about POTS and has many patients with POTS, he says I need to do exercise but its almost impossible if I do just 5 minutes of exercise it leaves me aching and so tired I cant move. I have 3 small kids, so its not like im in bed all day, I am non stop, but there are days where I need to call family to help me becasue I cant take care of them. I just feel like the little improvement I had is gone, and Im right where I was a year ago. My muscles ache so much that I cant move, its sometimes physically impossible for me to move. just so weak. If any one has some insight i would love to hear from you. Thanks in advance. Im so overwhelmed, i have so much guilt feel like im not being a good mom, like I am just a stress for my husband......

thanks for the responses, I wrote it was 189/115 sorry, my brain is just not all there! lol So its part of dysautonomia? I did not know that. thanks for the responses

I was recently diagnosed with POTS, had it for almost 5 years. My symptoms have been low blood pressure, fainting, brain fog, exhaustion, muscle aches, weakness, problems sleeping, headaches, nausea and a few more im not remembering right know. I take midodrine 5mg twice a day, adderall, atenol, gabapentin 600mg once a day and also get IV fluids daily have a midline. Know for the first time in my life I have been dealing with very high blood pressure and am very confused as to why this is, I stopped the midodrine and still have high blood pressure it has been over 115/189 my normal was 90/50 to 100/60. any input would be appreciated thanks

Thanks for your responses, sorry I did not respond sooner, my 3 year old had his scheduled tonsillitis, and its been a tough week! To answer some questions, The stroke was caused by hemoplegic migraines. My daughter has food intolerance's and reflux, she developed food aversions and has a feeding tube. Developmentally she is right where she is supposed to be. We are being tested for mitochondrial disease, but so far all the test are negative. I have my first appointment with the specialist for POTS on September 13th and hopefully I will get more answers. Thanks for your responses

Thanks for your reply, I will research each one. Traveling to see Dr. Grubb would be very difficult for me, my baby has special needs and it would be really hard. Exercise is very difficult for me, I cant do much without fainting, September 13th is my appointment with specialist, hopefully he will have more answers. I really appreciate your response. Thanks

After 4 and 1/2 years of doctors telling me I was depressed, anxious, overtired, "it was all in my head," I finally got diagnosed with pots after a positive tilt table study. That being said, it has been a bitter sweet diagnosis, I am so relieved and happy to know why I have been fainting, feeling exhausted ALL THE TIME, cant handle hot weather, takes me hours to be able to get up from bed in the morning, my whole body hurts, I get the worst palpitations, migraines, this horrible tension and pain in my neck and shoulders plus a ton of other symptoms. So I am so happy to know it "was not all in my head" but at the same time I am sad and worried that at 27 I have this illness, that already keeps me from fully enjoying my kids and being able to have a normal life. It has been very tough 4+ years, and my body is just taking longer to react, fainting more often, have not been able to work for a year, have not driven in 4+ years, cant be outside for long, its been a lot. My husband has had to deal with a lot and had to take a lot of the load its the worst feeling to see him working 60+ hours a week and taking care of the kids when he is home and he is so tired he can hardly move. I also suffered a small stroke 2 years ago that left my left side paralyzed for 3 months, I can move my left side but it is very weak. TO add to this we have a 10 month old baby on a feeding tube!!!!!! I get up and take care of the kids as best as I can, it takes SOOOO much out of me to take each step, each step is a marathon for me, my house is a mess, I feel like soon even if I give it my all I wont be able to move it gets worse every day sorry I am rambling I am just overwhelmed. So questions: How do you handle not being able to work and providing for your family?? financially we are drained! Will I ever be able to drive? How can I support my husband through this? Emotionally??? How do I tell people that even though I "look" good I am feeling horrible? how do you take care of your kids? HOw do you get groceries done? what kind of help is out there? how do you emotionally cope with all this symptoms on a daily basis?? How do you manage living in constant pain 24/7? how do I talk to the doctor about disability? Will he think I am trying to just get a free ride?? thanks in advanced if you read any of this.