Brye

I get charlie horses at night almost weekly. If this is new for you you may want to have your electrolytes checked to make sure there's nothing abnormal causing it! Brye

Not sure about the pamphlet. My favorite GP response after he figured out I had more than a HA was "I'll be back in a minute, I'm going to have to GOOGLE that one! Love the honesty!! Good luck with your new GP. Hope they can help!! Brye

Yes. I had a prescription for one from my doctor who encouraged me to get one. I could have used it especially at night when I was half asleep to get to the bathrooom. My problem after further eval was it did'n"t fit through the door. I wish I still would have gotten one at the time though. It would have been fully covered at the time since I had met my deductable. I can think of some times it would have come in handy. It was also early in my diagnosis and I was having a hard enough time talking myself into the shower chair. I was having an age crisis I guess. I'm over that now for sure and would take one for sure now!! Brye

Love hearing from other moms out there!! I'm a mom of 4 my kids are 8,6,3,2. I developed POTS after baby 4 so I had a 15mo old and newborn along with my older 2. Things I've learned ... I cherish my house cleaner, she comes every other week and worth every penny if you can swing it. I've learned to accept and recruit help. I've gotten over the guilt of asking friends for help if I need a break or hiring a babsitter or moms helper if needed. I'm exhausted all the time and nap whenever I can. I love my kids dearly and they are what keeps me going. They get me up out of bed each day. I will say as they grow older there are different challenges but overall it got easier for me. The sleeping through the night was huge for me and now what seems to me to be my last toddler obstacle is potty training the final one. Time goes so fast and I really try to just enjoy the time I have with them. They love to just sit with me. As soon as I sit I usually have 4 kids competing for the prime lap spot, even my 8 y.o. is with them. They know there are things I can't do but I'm able to care for them, meet their needs, and they are all happy and healthy! Best wishes to you. It's a challenge having kids but worth every ounce of energy!! Brye

I have a TERRIBLE time with fatigue. I have 4 kids or I probably would sleep all day but I drag myself around all day long. There are so many causes for my fatigue ... 4 kids, medication side effects, POTS, vit D deficient, and did I mention 4 kids? It even impacts my memory at times. I had 2 visits to the doctor because it had become so severe I was running stoplights and had totally lost my memory. One was the vit D deficiency and the other was mono. I also have a lot of bradycardia with rates down in the 30's that I feel may contribute. I may give a pacemaker a try to see if that helps. I'm contemplating that one right now. It's been recommended by several cardiologists now as possibly helpful. My primary diagnosis is POTS and besides the fainting that's my worst symptom. If anyone has anything that has helped them please share!! It's hard to explain to others just how tired I really am. All my friends are tired because of the kid responsibility but It's just hard to explain the fatigue. I feel your pain though and hope you get your rest and find something that works for you!! Brye

It said on the site they had XL ones left and were giving them away free. I filled it out as well and haven't received the shirt. Hope you are able to get some good advice on the DINET site. I'm not Dutch but our High scool mascot was the flying dutchmen. I grew up in a Dutch town in WI. Brye

They don't think it's contributed to my POTS. I had an enlarged heart after baby #4 and it was only pumping half strength and it could have contributed to that along with the strain of pregnancy. They don't think it's contributing to my POTS though. The enlarged heart has resolved now and my pumping strength is back to normal. A TEE (trans esophageal echo) is where they sedate you and put a tube down your throat to get a different angle of your heart. It's probably in your future if you haven't had one done yet. It wasn't awful at all, don't remember any of it in fact. Let us know what you find out! Hope it's good news!! Brye

I had a bubble echo that diagnosed a hole about a year ago and then a trans esophageal echo that diagnosed a PFO (Patent Foramen Ovale) I got all excited thinking maybe there was something that could actually be fixed to relieve my POTS symptoms and cure my problems. No such luck. I take an aspirin a day to prevent a stroke and there's no need to fix it. It's apparently not all that uncommon and guess since it's been there since birth and not caused a problem no treatment necessary. I guess that was the good and the bad news for me. My grandma and all 4 of her kids had congenital heart defects as well so there's a big family history for me. Did they do a TEE for you? I guess that's how they tell better how big the hole is. Brye

So glad you were approved!! I had such mixed emotions when mine was approved. I was relieved that I didn't have to appeal at all but it was a bit depressing as well that I met the qualifications that easily. Hope you can now focus on getting well!! Brye

I have found a similar program. It's a cardiac rehab maintenance class through the hospital. There is an exercise physiologist who helps out and sets up a program for each individual. It's been very helpful. I'm so much stronger than I used to be! Hope your work outs are helpful to you!! Brye

I have hand tremors. They get worse when I'm more tired than usual or when I'm in a hurry to get something done. Wish there was an easy fix but haven't come up with one yet! Brye

Potsgirl ... I broke a toe recently too. Walked into the piano. It's been over 3 months and I'm still feeling the toe pain. I've been able to start walking on the treadmill again though!! Hope your toe heals quickly!! Brye

I'm visualizing the pool, the drink, and even the umbrella! No rest here for me though. I have 4 kids and there is no time for rest. I have my chair in the shade outside for our driveway fun and a chair in the shade near the swingset!! I also recruited a very reliable babysitter for the summer who saved the day. I do have to say though I actually had a day recently I wasn't feeling well and laid around more than usual and I did notice a definite increase on my symptoms when I stood up. Amazing how fast that can make a difference! For me I think I just need to keep moving! Brye

I have thigh high medivan ones and I hate when they do that!! I have found the lacey looking tops are more likely to roll than just the plain ones! Brye

Absolutely is my vote on the exercise. Not sure it's helped my POTS symptoms but I'm so much stronger than I was. It wears me out but I now have an easier time climbing stairs and carrying my kids around. I'm in a cardiac rehab maintenance program. I do a stationary bike and my HR jumps as well with Increased resistance on the recumbant bike. I definitely do muscle building exercises, especially leg ones. It's supposed to improve blood flow back to the heart if you can get your muscles stronger. That's the theory I'm going with anyway. Doesn't give me adrenaline surges. Maybe because I'm too tired from the rest of my workouts!! Brye

An EP study doesn't necessarily mean a cardiac ablation. It can be used just as a diagnostic tool. I had an EP study and it really wasn't that awful. They couldn't reproduce my V-Tach or find any abnormailities and there was no ablation. Brye

I was an ER nurse! Scary as well that I can't even remember if I took my own meds much less worry about someone elses. I love the weekly pill box idea but if my kids got a hold of it they would think it was a huge stash of candy!! I plan on getting one that locks at the end of the year with my flex spending money if I haven't used it up. The pill box idea has definitely crossed my mind though!! Thanks!! And as for the nursing career ... not looking good for me either. Brye

This reply sums it ups for me!! It's the short term memory I have a terrible time with. I take my meds sometimes and less than 5 minutes later I can't remember if I took them or not. I had a couple times I thought I was losing my mind my memory and focus got so bad. One time it was mono making it worse and the other it was vit D deficiency. Now that those things have resolved it's gotten a bit better. I'm back to my normal absent minded state. Brye

I live in AR and I drive to Little Rock to see an EP cardiologist. Not sure how in depth you've gone with your testing but he's been helpful for me with continued testing and medication adjustments. His staff has been friendly and helpful! Let me know if you're interested and I'll PM you his name! Brye

Thanks so much for all the input. I definitely have a bradycardia problem and that's what it would be for. I've been unable to back off the beta blocker. I'll look into the norpace as well. Not sure if that is an option for me but I'll do my research and chat with my doctor about it. Sign me up for the one that's compatable with MRI scans. Good to know there's one out there!!! It's such a tough decision to make because I do have the choice and I have to make it. There's no failed ablations or heart stopping moments. I've now had 2 doctors suggest it as probably helpful and one "I can put one in if you want me to?' My next appt isn't until October so I have a few months to see if the midodrine helps or not and to contemplate. Thanks all for your great input!!! Brye

I'm only at 2.5 years of dealing with this and I'm still working on the perfect team. With the mito diagnosis then, how did your treatment change? It's been an insurance nightmare trying to see a specialist. There are no In-network providers. Not sure about the genetecist. Thanks for sharing your info! Brye

I'll have to archive the pacer conversations again. That's why I'm agonizing over this decision so much. If it doesn't help at all I'll be stuck with a pacer forever that I may never need. I haven't read of stories that pacers made anything worse. It's so hard to know what to do when there's no clear answer. It would be so much easier if I had some big pauses or severe brady spells that would make it clear. Never mind I said that, I don't want to jynx myself!! I'm so desperate to find some extra energy from somewhere. Not sure if this is the answer or not! Thanks all for your input!! Brye

Thanks for the advice potsgirl. Glad to hear yours worked well for you. I've started a trial of midodrine for the next 3 months to see and we'll re-evaluate then. That one makes my scalp itch almost more than I can stand. Odd side effect!! I'm now leaning towards a pacemaker but it has taken me a long time to reach this point. 3 seperate EP doctors have now recommended as probably somewhat helpful but no guarantees. I was remaining hopeful my POTS would resolve and I wouldn't need the atenolol but it looks less likely as each day goes by. I actually have a loop recorder in right now so the last time I needed an MRI they had to do a myelogram instead. No fun on that one. Thanks and hope all is well with you!!! Brye

I have 4 kids and they all help out! My oldest 2 are 8 and 6. They both vacuum, and sweep the floor. They also empty the dishwasher and put away their own laundry. The 3 and 2 year old are still training. I also have a cleaning person come in twice a month to help but I understand that gets expensive. I actually mop the kitchen floor by throwing down a wet towel and pushing it around with my feet. Not the perfect cleaning tactic I'm sure but gets most of the crud. Your son may even get into skating around the kitchen on a towel. Good luck!! Brye

Did not know that!! I asked my doctor if it was just to raise my BP and he said something about some ans effect that it may actually speed things up. I'll obviously need to research further. Hope it doesn't slow it down any more though! Maybe that's why I stopped taking it during the last midodrine trial. I couldn't remember the reason. Thanks for the warning. I've been avoiding the pacemaker like the plague! I'm still hoping for that something else too!! I'll let you know if I find it!! Brye