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Sam1's Achievements


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  1. Am in the process of relocating to the Vegas area and was curious if anyone else was from there that had a personal recommendation of where to look for a new autonomic (and/or cardiology) clinic. Looks like there's a few in phoenix, and a few in los angeles, but I can't seem to find anything remotely close. Sort of sucks about this part because I've been spoiled having the Vanderbilt clinic just 30 minutes down the road lol.
  2. I actually switched from metoprolol to atenolol and atenolol was way too strong. Had no issues with metoprolol, but atenolol required me to break the smallest pill they have in half. Never messed with the metoprolol XL, have you talked to them about the regular/multi dose per day? We're all different, but for whatever reason my body doesn't like extended release anything.
  3. I've found that dry heat is easier to deal with than humidity + heat. Feel worse in 75 degree weather with 70% humidity than in the desert with 115 degree heat and 0 humidity. Am planning on moving year after next for this sole reason to either Utah or Nevada.
  4. Every school is different, you need to talk to their disability coordinator. I have issues sitting at the desk doing homework almost daily and the only thing that helps is to get up and move around a bit & prop my legs up on the desk (when working too). Even with compression socks, I still have to elevate, or 10-15 minutes in I start feeling so uneasy it's impossible to concentrate.
  5. Welcome, and hope it helps. I agree with you on all the unnecessary additives - that's why I was so happy to find this myself.
  6. Not sure if these have been shared here or not, but I found a fantastic sodium/electrolyte supplement packet. Last month I was out at a music festival in Vegas, 3 days long, 10 hours per night, outdoors and the temperature was over 100 degrees almost 100% of the time (peaked at 117 degrees). Walking, dancing... basically everything that we're not supposed not be doing. Had zero issues (other than the usual feeling bad). So, a friend turned me on to Trioral rehydration salts which are used for hangovers, food poisoning, heat exhaustion etc. and the things were fantastic. These are so much better than having to worry about making your own homemade concoctions and they come in packets so all you need to come up with is some water. Thought I would share, they worked so good out there as soon as I got home I just ordered a box of 100 Trifecta pharmaceuticals Oral Rehydration Salts ORS (100, One Liter Packets/Box) World Health Organization (WHO) New Formula for Food Poisoning, Hangovers, Diarrhea, Electrolyte Replacement That's not my store, and I'm not associated with them in any way. You can read the label to see the ingredients, It doesn't taste spectacular like gatorade or the others, but it definitely works well, Hope this helps someone.
  7. Wanted to update on this, surprisingly the adderall has worked wonders. It didn't cure anything, but it sure made things a lot more tolerable. I'd say on most days brain fog issues have dropped by 80-90%. Never tried a full dose (10mg 2x daily), did 5mg the first time and that was too much. Dropped to 1/4 dose (2.5mg 2x daily) and everything has been better for 3 months now. Still have issues with some things, but I have been able to start riding the exercise bike (can't do much anyways - artificial hip/bad knee) up to 30 minutes at a time without getting winded and still have energy, I just normally stop at that point because there's other things to do. Hopefully between that stuff and actually being able to exercise again, things will get even better. Ultimate goal is to get back off of it, as I don't like taking any meds at all - but it's an unfortunate necessity for most of us.
  8. Has anyone used hemp-based CBD oil to treat other conditions in conjunction with having POTS or any other orthostatic intolerance related issues? The cannabis CBD thing seems to be getting around that it can all but cure issues like nausea, even treat chron's. What I was curious on, is how does the hemp-based CBD oil stack up against cannabis-based. If both plants contain the same type of CBD, why would that not work as good for inflammation and other ailments (although with little to no THC, it would not be nearly as effective as a pain reliever)? Anyways, just curious if anyone has tried it out - I'm not interested in the cannabis-based oils due to the legality issues at the federal level. Hemp-based is considered a dietary supplement and is not restricted by DEA/FDA. Thanks
  9. Here's a quick note on the difference in concentrations of metoprolol and atenolol in the brain: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1402194/pdf/brjclinpharm00208-0018.pdf according to the journal articles I've read over the past few months, atenolol appears to jump the blood/brain barrier the least. And the half-life of atenolol is more consistent in general than with metoprolol.
  10. Thanks, and yeah I sort of expected some interactions, but both of the doctors didn't think it was a big ordeal to start it in my situation. They just wanted me to monitor vitals. As far as analyzing the data, that is one thing I do not do. I record everything I can, but never analyze anything. If being a doctor was easy enough to learn some terms and buy some cheap toys, everyone would be doing it. However, I am a big proponent of data collection and passing it along to the qualified people... let them analyze. The really strange thing is that I haven't taken anything at all today and moving around my HR is still the the same sitting or standing, moving around, up and down stairs on all three floors of the house... It's been right at 60-70 the entire day. No OI issues at all. Whatever caused this feeling today, I wish I could bottle it up and put it on the market as a pill lol.
  11. Well, I decided to try it earlier. 180-185 lbs - only 5mg adderall (1/2 of what was prescribed). Had not taken any midodrine (on low starter dose 2.5mg x3 day) for 6-7 hours. Had a big meal shortly before trying this. About an hour in, I felt a bad episode coming on out of nowhere. RHR jumped from about 60 to 87 (like someone flipped a switch - those with SVTs, that's what it felt like except at a slower rate) according to the ecg; was fairly concerned since that was so soon after taking it. Took a 25mg metoprolol and within 30 minutes HR went back to normal, 60's both standing and resting. However, about 30 minutes after taking the beta blocker I felt a pvc and then some variations in my heart rate (previously known issue with me on metropolol). Recorded it and you can see below from the little tic marks below each row (heart beat) that it was going fast in the beginning and then slows down in the middle of the recording (spaced further apart) then speed up a bit towards the end. Nothing major, but you know how easy it is to become hyper-sensitive over those things in our situations. I went into this knowing that both doctors told me to be aware of everything, and luckily only took 1/2 the suggested dose. And also already had beta blockers on-hand. While not the atenolol that the cardiologist wanted me to try with this, it seemed to calm everything down fairly quickly. I will not be trying any more until getting a prescription for atenolol like he suggested and next time I will try 1/4 the dose of adderall to see how that works. (note: I have never tried adderall before so didn't know what to expect) The way I feel now is fantastic though, it's so strange being able to sit or stand and my HR not change at all... Been so long since I've felt this way. Specifically I would like to mention that after feeling that initial onset of the adderall, proceed with caution and if you inquire on this, double check with your doctor, then check on all med interactions yourself before trying. For me, the rest of the weekend will be back with normal meds and no more adderall until speaking with the dr. again... And - don't just jump into this carelessly, that onset spooked me pretty good because I was not expecting it to come on that strong since it was 1/2 dosage. I think it has the potential to cause issues if not careful. And to reinforce this a third time - be cautious this is apparently not something to play around with in our situations. If you talk to your dr., you may want to mention having a beta blocker along with it, cause without those, I can assure you this would not have been pleasant.
  12. PCP wants me to try 10mg adderall 2x daily (think this is a lower dose, but will probably start with half that anyways) Cardiologist said to just monitor my heart rate and let them know if it jumps too high, they would put be on a low dose of atenolol (was on metoprolol last year and it was causing bradys - no fun). Sent message to the autonomic dr. inquiring on the situation of just starting on midodrine over the weekend and adding this to the environment without having a solid baseline for the midodrine itself. After my accident some years back, a doctor told me to be cautious with multiple meds because two medications cause three interactions with your body, the interaction of each med, the the interaction of the meds with/against each other. The cardiologist didn't seem overly concerned about it after reading through the autonomic doc's notes, but it never hurts to have a second, third or fourth professional opinion on things lol.
  13. Schedule with the PCP tomorrow to discuss. Am not sure if he will refer me to a psychologist or if he is willing to start testing out meds with me. Thank you for the links
  14. It's at www.alivecor.com My electrophysiologist told me to buy one. If you have an iphone, they are built into the case. I have an android and got the universal one. It has been worth its weight in gold, any time I just touch the app, put my fingers on the pads for 30 seconds and viola a legit ecg. These are FDA approved, my cardiologist has me send him the pdf's when there is a question about something, and on Thursday at the autonomic clinic, I took in about 20 print outs showing how my pulse jumps 30-40 standing up, drops sitting down, jumps standing up, drops sitting down constantly within a matter of just 4-5 minutes over various dates and times of the day. The funny/messed up part about this is that I had an implanted loop recorder put in my chest that doesn't catch as many episodes as I can with the alivecor device. I asked the EP why he had me implant the device (at about $3k copay/out of pocket) when this thing does almost the same stuff for $99. He said "you got the implant a few months before alivecor was approved by the FDA".... dangit! If you go to their site you can see how it works, you do not have to wear anything and you always have your cell nearby so it's easy to catch an episode when they pop up.
  15. Lucked out and got bumped to the front of the line at the autoclinic for an actual consult thanks to a cancellation. Did a TTT last September, EP said nothing was wrong. Did the simple laying/standing test today and BPM was 60, then standing up it was 90~89~98 no change in BP. Anyways, doc recommended the usual extra salt, fluids, the medicine that constricts your veins for that. Gonna give it a shot and report back. Asked about the meds to address brain fog/attention issues and she didn't seem to want to suggest anything for it, said I need to talk to the PCP on it. She did expressly mention that just about all of those meds stimulate the same system that is causing my issues, so proceed with caution. She also said that provigil has the least affect on the vagal system, but it is also specifically for narcolepsy, very expensive and insurance would not probably not prescribe it for attention issues. So I set up an appointment with the PCP next week to discuss other options, and have a message in with the cardiologist about the concerns & if I need to get back on beta blockers because of the need to do something about this... Need to be proactive, would rather test something and it fail than just sit around and hope it gets better. Would be nice if they classified provigil for additional purposes since there is a generic and there is the potential it can help other issues...
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