ehl5 Posted December 31, 2007 Report Share Posted December 31, 2007 Hi, I'm new to this board, but not necessarily to POTS.I originally got diagnosed with that in 2003, but when I moved to Pittsburgh and sought treatment here I had to get re-diagnosed which happened a few weeks ago. I also have hypoglycemia and a seizure disorder which may or may not be POTS related. I use 30-40 compression tights and a cane from time to time.The doctor at the lab I was in (but not the doctor I see) mentioned something about giving me a low dose beta blocker. I've never been on one of these before, but I've read they either work really well or are an absolute horror so I guess we'll see.Anyhow, I look forward to meeting you all Quote Link to comment Share on other sites More sharing options...
Mrs. Burschman Posted December 31, 2007 Report Share Posted December 31, 2007 Hi, Harper! Welcome to the board! We're happy to have you -- but not happy you have POTS!I hope you find this place and warm and helpful as I do.Amy Quote Link to comment Share on other sites More sharing options...
morgan617 Posted December 31, 2007 Report Share Posted December 31, 2007 Welcome Harper, I hope you find what you need here, it's very supportive and safe.Many many many of us are on beta blockers. You may have to try a few different ones, or they may not work well for you, or make make you feel much better. It's very different with everyone. Just make sure they start you on a very low dose and titrate up. That's very important. Good luck sweetie..morgan Quote Link to comment Share on other sites More sharing options...
maryfw Posted December 31, 2007 Report Share Posted December 31, 2007 Welcome aboard. Just curious......what kind of seizure disorder is it that may or may not be related to the POTS?mary Quote Link to comment Share on other sites More sharing options...
pat57 Posted December 31, 2007 Report Share Posted December 31, 2007 Hi there,Have you had any Tilt Table Tests? I have seizures with NCS. Neurocardiogenic syncope. Lots of people here have NCS and POTS.It seems few (here) with NCS have seizures, but nevertheless it is known to occur. Quote Link to comment Share on other sites More sharing options...
lloppyllama Posted January 1, 2008 Report Share Posted January 1, 2008 Hello Harper, welcome to the board, I personally would recommend trying a Beta-blocker, as it has made a world of difference for me, so if you aren't able to do everything you used to, it might be worth a shot. Good luck and welcome!Mary Quote Link to comment Share on other sites More sharing options...
Maxine Posted January 1, 2008 Report Share Posted January 1, 2008 Welcome Harper. You'll find a lot of friends here who will offer support, and help you with the many questions we all have.Take Care,Maxine :0) Also, HAPPY NEW YEAR! Quote Link to comment Share on other sites More sharing options...
JaneEyre9 Posted January 1, 2008 Report Share Posted January 1, 2008 Hi Harper--Welcome to the forum! Beta blockers can definitely help reduce tachycardia and make you feel "calmer." I was on a beta blocker for many months after my diagnosis, and enjoyed not having that constant racing heart feeling. However, I personally suffer from low diastolic BP so the beta blocker only lowered my BP more. When I went off of it, I had a higher heart rate again, but felt less like passing out, so it was a positive trade-off for me. You might want to talk to your doctor about monitoring BP if yours runs low. Take care!Kristen Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted January 1, 2008 Report Share Posted January 1, 2008 Welcome newbie!You will find this is a great place to share and learn.BB's were not good in my body. I had horrible chest pain on them and that was only after a few days. It made my borderline heart block much worse and so I was forced to stop.I use compression garment, compression hose, on occasion, abdominal compression, electrolytes, water, rest, and lots of tools when needed like a seat cane, shower chair, hairdryer stand, also... even when in a relapse, physical activity and intellectual stimulation is important.I hope you find a treatment plan that helps you get back some of your life!best regards,tearose Quote Link to comment Share on other sites More sharing options...
DADofPotsSon Posted January 1, 2008 Report Share Posted January 1, 2008 Welcome Newbie ehl5You will find this site to be very helpful and the people here most friendly.My Son #2 who will be 21 yrs old in a few weeks and has NCS and POTS. It all began about 3 years ago having seizures in the summer time after a work out. He was treated for seizures for 9 months with multiple seizure drugs and he did NOT respond positive to any of the drugs, in fact Keppra made the condition much more severe with more events. Just by pure luck he was in the ER hooked up on a EKG after being brought in for a seizure, after complaining of chest pains. His BP was 90/52 then his blood pressure dropped to 55/37 and the EKG recorded with a HR of 175+ and 3 minutes later he went into another seizure. After all this he was taken off the seizure meds., he than began a long process testing and many differnt Doctors which led to a diagnosis of NCS and POTS. He is now on Midrodrine, Toporol XL and a low dose of Dilantin(phenytoin). Dilantin is being used as a preventative to keep the multiple convulsive syncope events from going into grand mal seizures. On one occasion prior to being prescribed Toprol XL and Dilantin he had multiple (6) convulsive syncope events in several hours that converted into grand mal seizure then status elpiticus. Though once he began taking Toporol XL a beta blocker, it stopped the convulsive syncope events. Dr. Grubb is taking him off the Dilantin in February 2008.Sorry about the long story to get to the point, but hopefully it helps!DADofPotsSon Quote Link to comment Share on other sites More sharing options...
ehl5 Posted January 2, 2008 Author Report Share Posted January 2, 2008 Welcome aboard. Just curious......what kind of seizure disorder is it that may or may not be related to the POTS?maryThe kind that might be anxiety based... I got in control of that and I haven't had a seizure in 10 months. Quote Link to comment Share on other sites More sharing options...
runningshoe Posted January 2, 2008 Report Share Posted January 2, 2008 HiI hope 2008 brings health and happiness to all....I am on a bb, Nadolol. I am hypertensive without it. It took awhile to get the dose right. Good luck and keep us posted! Quote Link to comment Share on other sites More sharing options...
ehl5 Posted January 2, 2008 Author Report Share Posted January 2, 2008 Hi there,Have you had any Tilt Table Tests? I have seizures with NCS. Neurocardiogenic syncope. Lots of people here have NCS and POTS.It seems few (here) with NCS have seizures, but nevertheless it is known to occur.I've gone through tilt-table testing twice: January 2003 and December 2007. The second one was to confirm the diagnosis because when I moved to Pittsburgh I didn't really have the record of the first diagnosis (mistake I'll never make again). Quote Link to comment Share on other sites More sharing options...
pat57 Posted January 2, 2008 Report Share Posted January 2, 2008 So, apparently the Docs didn't think the seizure was lack of O2 due to abnormal BP?And no mention of Neurally Mediated Hypotension? Quote Link to comment Share on other sites More sharing options...
ehl5 Posted January 2, 2008 Author Report Share Posted January 2, 2008 That option really wasn't presented to me when I was going through seizurehell. I was in an epilepsy monitoring unit and they found that it's not brain related, so they assumed that it was anxiety related. It may be related to the POTS, I'm just not sure. Quote Link to comment Share on other sites More sharing options...
pat57 Posted January 2, 2008 Report Share Posted January 2, 2008 hmmmmmwell with NCS AKA vasovagal syncope the HR and BP dive. I was sent to a shrink because of seizures and was later found to have NCS the TTT report showed 0/P, HR 40.I suggest you read up on NCS so you can discuss it in the future - if need be.http://www.nymc.edu/fhp/centers/syncope/va...l%20syncope.htm Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted January 4, 2008 Report Share Posted January 4, 2008 Hi ehl!It took me a while to say hi! Whoops! Hope you learn a lot from the board and find a great place of support! I know I have. A few months back I have my intro. I am a newbie too! And my signature line can catch you up too.Anyways hi and welcome!!! Quote Link to comment Share on other sites More sharing options...
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