Brye

I saw a neurosurg for my herniated disc. He set me up with PT and at home traction. I had steroid shots. No surgery required. Surgery is normally a last resort of pain can't be controlled by other options. Brye

I had my pacemaker placed almost 3 weeks ago. So far I've noticed I haven't had any resting CP and my ankle swelling had totally resolved. Too early to tell if I'll have more energy, still recovering from the surgery. I developed some leg pain, redness, swelling and found I have a large blood clot in the greater saphenous vein. Now back to bedrest/blood thinners. How totally frustrating. For me bedrest is my worst nightmare, really makes my POTS a whole lot worse. Do you ever think you just can't catch a break. I was just recovering from my surgery and now this. UGH!!! Thanks for listening. Looking forward to testing out the new pacemaker. I'll let you all know how it works out!! Brye

Awful ... I'm just recovering from a sciatic attack. I had a previous MRI that showed severe herniated disc with nerve pinch. If that is the cause of it they can do a steroid shot right into the disc. I went to a pain clinic for that. I've had 2 now each about a month apart and I'm a TON better. Also taking a daily anti-inflammatory helped as well. Ouch, hope you get it figured out. Surgery is usually the last resort. Now that I'm in less pain I'll work on strengthening and hopefully that'll keep the pain away at least for a while!! Brye

I just had a pacemaker put in less than 2 weeks ago for my bradycardia. Too early to tell if it's going to help. Still recovering from the surgery. I had put that one off for years while I tried to get back in shape/adjusted meds. Nothing seemed to speed it up and I couldn't back off my atenolol and still function. Brye

Scalp itching with the midodrine. I would rather have an itchy intact scalp than a dented one from fainting. Brye

I'm almost emberassed to say I don't know what pacemaker they're puttiing in. Waiting on a call back from the clinic. I'm thinking it's a medtronic, that was the brand of my loop recorder as well. That'll be taken out when they put the pacemaker. in. My meds have really done a good job of controlling my tachy rates overall. It's just the brady that has been occuring is a bit excessive. Praying it's the right thing for me, it's such a tough decision. I can tell even my doctor has been struggling with it. Glad he's struggling with it though. One doctor (not my favorite one) "I can put a pacemaker in if you want?" If I want ... really ... who wants one! I feel like my current EP is basing his decision on documented facts. So thankful to have found a good, supportive doctor!!! Brye

Sorry, sounds like it's time for a new doctor! It's extra difficult when you have kids to keep up with. I have 4 and that's been the worst part, not being able to keep up with my kids. SO FRUSTRATING! I had one doctor who told me just to drink a ton of gatorade and follow up in a year and I would be just fine. Then when I asked him to fill out a return to work note (ER nurse) he refused saying I was too sick. He's no longer my doctor. Hope you find someone who can help!! Brye

I'm praying it does, I'm having one put in Thursday! Vit D levels have really made a big difference on how I felt too. I was so thankful to have a primary doctor who thought to check that! Mine was down to 11. It puts such a drain on the small amount of energy I have to begin with. The pacemaker is a tough decision. I've been agonizing over it for a couple years! Brye

I have a form my lawyer drafted for me to have my doctor fill out when I submitted my disability claim. I think it really helped my case. I was approved the 1st time around. It gave the doctor a chance to specify your limitations such as # of times you were likely to miss work/month. I would be happy to snail mail it to you if you want to PM me your address. You would have to come up with your own form, all my info is on it but it would give you an idea! Brye

Mine has been running low for a long time. I've tried adjusting my beta blocker without success. It had been dropping in the 40's but these last few months it's been in the 30's consistenly. I'm having a pacemaker put in this month. I feel a whole lot worse when my HR is that low. If you're feeling well I wouldn't worry about it too much, especially after talking to your doctor about it. Way to go on the running. I will get there at some point. For now, the bike is my friend!! Brye

Thanks for all the pacemaker advice and good wishes. Appreciate you all!! Brye

I have a pacemaker surgery for February 16th. My HR seems to be getting slower and slower and cutting back on my beta blocker didn't go well. It's been dropping in the low 30's and staying there. Hope it's the right decision. My cardologist is hopeful it will help at least some of my symptoms. I'll let you all know if it helps! Brye

I really try to go to my primary doctor or cardiologist if possible. They are sometimes willing to give me over the phone advice that has taken care of my concerns. Anything to save me a trip to the ER. Sometimes it's just a med that needs tweaking a little and ER doctors won't normally touch that! Brye

I have the watch with the chest strap to transmit the HR. Mine is very accurate but occasionally there has been interferance especially when I'm in the car or on the computer. My HR will spike usually from 185-250. I've checked my pulse once or twice when this has happened and it was wrong. When my HR would get that high I remember the awful feeling I had with it so I know it's just some interferance. Brye

Mine really low I think from my atenlol. It's hard to find the right balance. Too fast without my atenolol, too slow with it. So frustrating!! I feel cruddy too. I get this weird lump in my throat and feel lightheaded. Mine drops to the low 40's. Brye

I had an EVLT with phlebectomy. Was before diagnosed with POTS but had CP during both procedures, probably early sign of POTS from all the epinephrine they used to numb the area. Still developed severe POTS. In the end my big veins just popped out in other places. Did help blood flow to my legs. Had a venous stasis ulcer at the time that healed up really well when it was done. Also had the ultrasound guided sclerotherapy done and that helped with my venous flow as well. One leg had more treatments, had to stop due to pregnancy and the leg that wasn't treated with the sclerotherapy is the one that gets more swollen.

I eat extra salt and take florinef. I also take a potassium supplement because of low potassium levels due to the florinef. They probably need to check that. Mine is checked every 6 months. Brye

I've had issues with horrible fatigue/memory problems. I've found that when my vit d levels come back up with the supplements I feel a bit better. My lowest I think was 11. Brye

I have a cleaning service that comes every other week. I have a babysitter come 3 times a week in the mornings during the summer and during the school year I have found a Kids day out program to take my 2 young kids while my 2 older ones go to school. We have quiet/nap time every afternoon for at least 2 hours, that helps a lot. Brye

In Arkansas all the Firework noise causes the black birds to fall dead from the sky. Apparently their adrenaline peaks as well. They need some earplugs too I guess! Brye

I was approved on my 1st attempt. My diagnosis is POTS, I was 37 at the time. You never know! I was all prepared to appeal and I got an approval letter. It was fairly easy to file, I did have my doctors fill out a form provided by a lawyer friend of mine that made it clear all the limitions there were. For me I think the doctor made it clear there was a high risk of syncope and that's what helped the most. Hope it goes well for you. So stressfull waiting to hear!! Brye

My HR is well controlled for the most part but I'm still symptomatic. For me I thing the beta blockers cause my BP to run kind of low. Frustrating however, I HATED the heart racing feeling and that's so much better for me!! Brye

I've seen the same cardiologist over 2 years now. I like him and his treatments have been very reasonable. I feel like I'm on the right meds. My problem is bradycardia right now. I've tried backing off of my atenolol and that didn't work. Tried stopping the midodrine, that didn't go well either. My HR's are dropping into the high 30's low 40's. I've been feeling awful but it's so hard to know what that's from. Could be holiday stress, bradycardia, med side effects, POTS, 4 kids, low vit D, so many possibilities. He's recommended a pacemaker. I'm pretty sure there are a couple on this site who have a pacemaker. I've agonized over this decision. No guarantees it'll help but will make adjusting meds easier and my be able to take a higher dose of atenolol. Such a tough decision. If anyone has any advice I would love to hear it. I believe it was "Potsgirl" who has one and said there was some improvement. Anyone else? I'm set to go back in mid January and I'm hoping to make my decision by then. UgH!! Thanks! Brye

Thanks for all the kind responses! I've made it through church with the family, completed my elf good bye note, and all my santa's helper duties are done for the night. Maybe they'll sleep in?? HAHA Have toned it down this year ... no big dinner, no massive cookie sessions. Love their excitement, just wish I had their energy. So thankful though for each day I'm able to spend with my sweet family. Trying to focus on what I can do and not what I can't. Tough time of year to deal with an illness, hang in there and have the best holiday you can!!! Off to bed. Santa's helper needs some rest!!! (Love the holiday heart theory ... so true) Brye

Wow, didn't mean to post that one 3 times. If anyone knows how to remove them feel free!! Thanks! Brye