Brye

This holiday fatigue is kicking my tail. I'm eeking by in life and now schools out, I have 4 kids home who are bouncing off the walls they are SO EXCITED!!! I'm tryiing not to be a holiday grinch but the list of things to do is so long and all I want to do is go take a nap. It's a lot of pressure being santa's helper!! Thank goodness for HAPPY MEALS!! Right now I'm wishing my Elf on a Shelf could be productive instead of mischievous and babysit a while!! If you have any holiday survival tips let me know. I Feel blessed to have such a fun, sweet family, they're just wearing me out! Have a great holiday season all my POTS friends!! Brye

I sit down, on the floor if I have to. I would rather sit in front of a bunch of strangers than fall in front of them all. I can occasionally divert it if I lean over, lower my head, and rest my hands on my knees. Brye

I have a medic alert bracelet and necklace I wear. I states heart patient, POTS, and lists my meds. If I did another one I would put my husbands phone # on it. I wear it especially when I'm out by myself or alone with my kids. Brye

I had an EVLT with phlebectomy. I have varicose veins all over the place. Not spider ones, the big bulgy ones. I was having venous stasis problems and they started with one leg and focused on that one because it was worse. I became pregnant and didn't have nearly as many treatments on the other one. The one that wasn't treated is now the one that will become swollen more frequently and more likely to develop venous stasis healing problems. It must have helped something. I was diagnosed with POTS and didn't have a treatment since. I did develop visual disturbances during all my treatments because they lowered my head down below my heart. They determined they were optic migraines. I also developed CP during the Phlebectomy and now that I know I have POTS it was probably from that and all the lido with Epi they gave me to numb the areas! I definitely think my varicose veins contribute to my POTS. Brye

Sorry, praying you get some answers soon. It's so frustrating when you have to travel so far for medical care when you live so close to a place maybe even more capable of helping. It's so stressfull waiting for answers and then even more stressful is the trial and error part when trying to get the perfect med combo. Scary time but hope they can get it figured out for you so you can get back to life!!! Keep us posted. Thinking of you! Brye

Yay! I'm on the 4th year ... even better! Brye

I would want to know why they came to that conclusion. Did they have another med record from another place that they looked at. It seems strange for a cardiologist to make that diagnosis? I think it may be worth a phone call. Maybe you can ask if he's concerned this is truly a valid diagnosis he could recommended an appropriate specialist to help you deal with it. Sorry you're having to deal with that. Hope the UW appt goes well. I miss Madison!! Brye

I was thinking someone told me I would get a yearly review. It's been over 3 years and so far they haven't contacted me. I keep waiting! Hope it all goes well!! Keep us posted Brye

HR dropping too low. Mine gets too low at times from my Beta blocker. time for a holter monitor? Brye

Not familiar with a Dr. Kamp. I live in Arkansas now and there are no specialists near here. I actually had an appointment scheduled with an EP doctor who sees POTS patients at one point in Mequon and I had to cancel it because my insurance wouldn't cover it at the time. He was out of network of course and I had to see all possible in network providers 1st until they all gave up. Frustrating! In the end it worked out for me though because I found one in network I actually like and it's only a 3.5 hour drive. Not too bad. Holidays really are hard for me. I feel like I'm eeking by in life as it is and it just adds one more thing I have to take care of. I've had POTS now 4 years though and I've made a lot of adjustments. I can't work so I was granted disability and that money goes toward med expenses, extra child care when I need it, and my house cleaner. (critical decision on that one) I do have a lot of guilt when I can't play with my kids. They are wonderful kids though and are handling it really well! Thank goodness!! Let me know who you end up seeing. We have family all over WI so that's probably where I would try to go if I decide to pursue more answers. Right now my symptoms are pretty tolerable. Take care! Brye

Glad you found this forum, it's been very helpful. I grew up in WI and actually worked at UW Hospital for years. I spent 3 years working on the cardiac unit actually, how ironic I have POTS now. Hope you find a good doctor who can help. I have 4 kids and my symptoms came on after the 4th was born. I can look back as well and see early signs, even in college. I was about 35 when I was diagnosed. It got better for me. Not perfect but I can function and my symptoms are tolerable now. My beta blocker (atenolol) is really my key med that I can't even miss a dose of. Midodrine and florinef have been helpful for me as well. It i took me a long time and numerous doctors to find the right combo for me. My drugs still need frequent adjusting but I'm happy with how far I've come. It took about 5 falls in the shower before I finally gave in and bought a shower chair. Best purchase of the year. Wish I had some brilliant cure but hope you find something that works for you. It's so scary when you can't keep up with your family!! Brye

I did have a doctor recommend crawling as well from my bed to the bathroom especially at night. Door was to narrow for a WC. Fall risk was too high. The good news ... my meds have helped and I don't have to crawl anymore. yeah!! Brye

Mine was 11. Brye

I take it as well to keep my BP high enough so I can tolerate my atenolol. Otherwise my BP runs too low. It helps some with that! Brye

Zofran helps me. Nausea relief without making me sleepy. Brye

Thanks, I need to look into these. I hate buying things on the internet, I'm an hands on buyer. Maybe I can find a local running/sporing good store to check them out. Thanks for all the info!! Brye

Lotusflower, what strength medical compression hose do you wear? I was worried the sports ones wouldn't have enough compression. Thanks! Brye

I've been wanting to try some sports compression pants out. I'll have to check these out. I have a love/hate relationship with the comp hose. Great question. Brye

Is this just based on our experience or is it something the doctor will approve? I have one I like who is an EP cardiologist but I'm not sure he claims to be a POTS specialist. Does someone confirm it with the clinic? Thanks! Brye

I don't know if he's right or not but I hope for you he is. How great would that be. I have POTS but I haven't gone further to find out what kind. Just treatiing symptoms for now. Too hard to travel to see specialist. Symptoms are tolerable for me right now. Good luck. Let us know how it works out!!! Brye

I see my doctor every 6 months, more often if there is a problem. I also have my potassum checked every 6 months. I take florinef and a potassium supplement. Surprised they don't schedule frequent follow ups for you. Brye

Hope you get in soon. Waiting for appointments is the worst. It is a trial and error thing for me. Fortunately I've found a cardiologist who is willing to adjust my meds over the phone every once and a while. He's a 3.5 hour drive away so he's saved me a lot of travel time. Hope you find a treatment plan that works for you soon. POTS is exhausting, especially with little ones to take care of!

I take atenolol for HR control. Works great. I do have to worry about my BP running to low though. Needs to be adjuste once and a while. I take florinef and midodrine as well to keep my BP high enough so I'm able to take the atenolol. Brye

I was approved in less than 6 months. I was so prepared for rejection, I was surprised when I got the notice in the mail. My atenolol helps so much with my heart racing. I can tell even if I take a dose late I get winded because my HR just goes too fast. It also helps my hand tremors, that's kind of a bonus. I take florinef and midodrine as well to keep my blood pressures high enough so I can take the atenolol. I think I'm on the right meds now, occasionally they have to be adjusted for symptom control. I'm trying to decide if I should go with a pacemaker. It would make adjusting my atenolol easier. Right now if I increase my atenolol my HR goes too slow. My best decision over all this time however is my house cleaner. Best money I could spend!! Brye

I'm too tired to make this a long response. My POTS developed after baby #4. My beta blocker (atenolol) is my real saving grace. I did apply for disability and was thankfully approved. That extra money goes toward kids day out programs and babysitters to help as well as my house cleaner who comes every other week and medications and doctors bills. Hope you find some relief of your symptoms. I've been struggling 4 years but some things have gotten a little better. Welcome! Brye