Brye

ER nurse! Brye

My HR won't go above 135 even when exercising. The exception of course is if I forget to take my beta blocker. Brye

I'm officially losing it. I read the title not thinking abbreviations and was thinking it was going to be about some weird doctor response. OHHHHHH! NMHHHHHHH! It only took me a few sentences to figure it out! Continue on! Brye

I just found out today I was vit D deficient as well. I've had horrible memory problems lately, excessive fatigue, trouble focusing and it's been getting progressively worse. I had just been attributing it to POTS brain fog. I saw my primary doctor today to see if he had any suggestions. I started the supplement tonight and I'm hoping it'll help. I ran 2 red lights last week and that was my wake up call to get it checked out!! Brye

Thanks Erin for the discount code. I plan on looking into one of these before summer vacation for sure! My babes love to go to the park and I just DREAD it!! Maybe this will help!! Brye

I had a repeat one. Results were normal due to the meds I take. Good news and bad news. I still faint once and a while. My upright HR"s were great though with my atenolol on board. Hope it goes well!! Brye

What type of doctor are you seeing now? Just wondering? I've been debating on seeing an autonomic specialist as well. Trying to decide if it's worth it. I guess you really never now until you've handed over your life savings! Hope you start feeling better soon. I haven't had the HA problems. I guess I have that going for me! Brye

Can't give you any Mestinon advice but I have that losing it feeling frequently lately. I took an extra dose of atenolol right before bed last week instead of the xanax I usually take. My HR runs all the way down to the 40's as it is just with one dose. I stayed up late that night to make sure I didnt' get too bradycardic and survived another night. Hate when that happens!! Brye

We just had this discussion tonight. I suffer in silence and pretend all is well! Then I usually have a big melt down all at once about how I have been suffering in silence and he feels all guilty about it. He is a work-a-holic and sharing too much info just makes him feel guilty and helpless. Then he tries to adjust his schedule a little bit and that usually lasts a couple days until he figures out he can't keep up. Then it's back to suffer in silence. I have been approved for SSdi though so that money goes to my medical bills and extra help to care for my kids. That way I get the help and he feels less guilty! Works well for us! Brye

I suppose you mean health benefitting drink. For my drink of choice it's a frozen strawberry margarita. Not great for the overall BP though so I'll have to go with purple G2 gatorade. I also buy those powder generic pink lemonade packets at walgreens. They make the water go down a whole lot easier!! Brye

I wish I had some brilliant secret to share! The lawyer gave me a form to have my physician fill out with numerous questions about work ability. He said if the combined standing/sitting ratio was less than 8 hours and the likelihood of missing work was more than 3 times/month Chances were better for an approval. I gave that to my doctor and he filled it out and both answers ended up in my favor. I submitted that with my other paperwork. My diagnosis is POTS. Not sure what type or what the cause is. I've never seen an autonomic specialist. I had been dealing with it for over a year when I applied and I had numerous documented visits to experienced cardiologists who failed drastically at trying to treat it. The cardiologist made it clear there was a high risk of syncope at any time on my paperwork. That was the main reason I couldn't go back to work, I keep passing out. The doctor wouldn't write me a work note that left out the chance of syncope and the hospital wouldn't accept the work notes that were written. I think that helped in the end because everyone was afraid of liability if something happened. Not sure how I missed out on the psych eval but after reading all your posts and others I'm thankful I didn't have to go through it! I'll be thinking of you during this difficult time though and if you have any questions I would be happy to answer them. Not sure what the secret was but hope you get an approval soon! Brye

I'm sending you a hopeful e-mail because you just never know! I applied about a year ago and was approved the 1st time so it does happen. Also there was not 6 month wait for me for my check from the months I missed while waiting to be approved. I actually received my back pay check before I received my 1st monthly check. I didn't hire a lawyer but did receive some complimentary advice from a friend who is a lawyer. He was even preparing me for rejection because of my age. He said it seems like the younger you are the harder you have to fight. Hope you are approved especially after all the stress they've put you through. They didn't request a psych eval of any kind here. I wonder if it varies from state to state. Anyway ... Keep us posted and hope they come through for you! Brye

Nothing more to add here but laughing as well! Thanks! Brye

I don't know what kind of POTS I have but at night when I lay down to go to bed it feels like my adrenaline won't shut off. I have this weird tremory chased by a bear feeling until I fall asleep. I take xanax at bedtime. It doesn't help the tremory feeling but it makes me sleepy so I at least fall asleep quicker. I never was an anxious person pre-POTS so I'm pretty sure it's an adrenaline surge for me!! Brye

I had them a lot when I was pregnant. 1st few times I thought it was some type of a stroke. Now I think I average about 1/month. Zig Zags ... what a great description. I get prismy zig zags on the outside and it seems like tunnel vision. Usually if I lay down they go away in less than 20 minutes. I've found a good caffeine bolus can resolve them sooner too!! Brye

I'm terrified of losing my license. Last ER visit I got the "I have to tell you you shouldn't be driving" lecture. I went 3 months without driving when I 1st developed POTS. I saved a whole lot of money but it was not fun for any of us!! It's such a hard decision. The only way I justify it is I've never fainted sitting down. I do really have to focus because it's very easy for me to space out especially if I'm over tired. Brye

Works for me! Tried a stretch without it recently because I HATE all the fluid retention. I had horrible memory/concentration problems without it. I couldn't remember the month, took the wrong meds, forgot things numerous times when I left the house. Guess I need it!! Not worse with the colds or infections with me!! Brye

What were his recommendations? Anything that may be helpful? You need to stick with it if you feel they are missing something!! If you haven't even seen this doctor he doesn't know how concerning and problematic it even is for you! Brye

There was a recommendation of a seat cane on one of the past responses. I haven't gotten one yet but that sounded like a great idea!! Take your seat with you wherever you go in case of emergncy!! Brye

I had an enlarged heart when my POTS started. My EF was only 30% (about half of what it should be) Not sure if they were related. They both could have been caused by a virus as well. I confess I keep some secrets from my parents. They live a long ways away and I feel like I tell them too much they'll worry and I don't want that!! Try not to be too hard on him. Right now I'm sure he needs you to focus on getting him well again! Brye

No end date here but just a whole lot of positive thinking! I've had POTS for 2 years and have had to greatly alter my life! There are good days and bad days. I"ve scheduled in naps, swallowed my pride and joined a geriatric cardiac rehab group, broke down and bought a shower chair, advised my kids I will not run unless being chased by a bear. Why won't your doctor share his criteria you didn't meet? Did he explain? Odd! My life changed overnight as well. I sure am thankful though for what I can still do. I'm thankful I can get out of bed, thankful I can still work out some (recumbant bikes are great a little afraid of pools due to the fainting), thankful I can still take a shower, Thankful I can still care for my kids! It took me some depressed times to get to this point but I still plan on working toward the health I want. For now I'm just taking it day by day and enjoying my life!! Hope you find some answers and someone who can help with your treatment plan. Brye

Welcome to the group! Hope they can find something treatable for you. My POTS developed after baby #4. Don't think it was linked to my epidural in any way because it didn't really kick in for a few weeks after. I have 2 csf leaks in the past so you never know. I've had a couple steroid shots since for a similar disc bulge and it didn't seem to make anything worse. I've had POTS just over 2 years now. I'm working really hard at getting back in shape. It's been a really slow process but I'm hoping to be able to run again. My kids keep asking me why I can't run so they provide a good incentive to keep working at it. I think if you at least keep up some activity it'll make it easier in the future once you get your meds to the right point. I did nothing for over 1.5 years. I can walk at a good pace now and I love the recumbant bike. That's been my outlet until I'm able to run again. Hope you find a some good results on your upcoming tests!! Brye

Definitely!! It's a horrible feeling!! There are a lot of things I can't do because if it. I would love to coach some of my kids teams but I'm afraid of how traumatic it would be if I passed out in front of them all. I can't even fill in if my husband can't make it to coach. Very frustrating. It's bad enough they've had to witness it. I feel awful for them. Then when it happens it's so hard to decide when follow up is needed. Is this just another POTS moment or is there something else going on. I feel you fear anyway. Never something anyone should have to get used to!! Brye

Maybe I stand an chance at a phone call soon then. It's been just over a year. Hope they call and get you in soon! Brye

40's and sometimes 30's for me. I tried to cut down on my atenolol but I can't stand the hand tremors and those got a lot worse. My tachyness is better controlled though Brye