steph37822

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Well good for you being proactive with your diet. Since you've been successful did the nurses mention that you could try Niacin, that is known for raising HDL "good" cholesterol levels only. I took Niacin once pre-POTS, but I doubt it would negatively affect your POTS, as much as a prescription medication like Zocor would. HOWEVER, niacin can cause serious flushing, and a weird feeling usually in your face but sometimes all over, I used to turn completely bright red, blotchy, and itchy.......So now they make a Flush Free Niacin, I haven't needed it for years, so I haven't tried it to know if it works, but you might want to look for that, instead of the regular kind. The other reason your doc might want you on Zocor though since you have a family history, is that these meds are starting to come out in studies as being effective in preventing heart attacks in people who have decent cholesterol levels. They think it could be a good preventative medication, especially for keeping the arteries clear and preventing "the first heart-attack." If you try it, hope it works for you, and certainly doesn't aggrevate anything else! Take Care -Steph

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Welcome back to Ohio Melissa! Sounds like it went well! --Except the wheelchair bs which is still ridiculous! I hope you are still taking it easy because it's back to being hot as heck!! Take Care -Steph

Hi Julie, while your numbers aren't that bad, they are basically in the borderline range, rather than desirable, which could lead to problems down the road. Your doctor is probably trying to stop that now. Having HDL "good" cholesterol less than 35 is considered the high risk factor for heart disease. Also your tri level was borderline, we get triglycerides primarily from the fat in our diet, these lipids are much more responsive than cholesterol to lifestyle changes such as exercising and eating a low-fat diet. However, making lifestyle changes can help lower your cholesterol, you also need to replace saturated fat with unsaturated fat, and maintain the exercise, low-fat diet regimen long-term. I don't know anything about Zocor, or any other cholesterol med. But I took a nutrition class in college that talked about why it is so important that we keep these levels in the desirable range to keep the fatty buildup in the walls of your arteries from causing a heart attack. I also don't know if you have any heart disease on top of your POTS, or if the purpose of your loop recorder is to find that out! Just wanted you to know there were options other than medication! Rumor has it--from all the mass advertising-- Cheerios work too! Take Care -Steph

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Hi Lois, I know the waiting is hard, but I'm sure your pcp had your best interest at heart and did the right thing! I will be thinking of you on the 3rd and hoping everything goes well. Also with the radiation afterwards. Like Emily said I do highly recommend Zofran for nausea, I'm sure you're (sadly) about to experience plenty of that. Please take care of yourself, and keep us updated if you have the strength, again, my thoughts are with you. Good Luck with your surgery. Take Care -Steph

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Hi Julie, glad the procedure is over with, and you are recovering. I wanted to inform you of this since you have to go through this again with the removal, I felt it important. Sorry I didn't read this before your procedure, I would've assumed the docs knew though. You do either have EDS or joint hypermobility right? And is Dr. Grubb aware of this, and was the anesthesiologist? Because it's been common knowledge for years that people with EDS III do not respond to local anesthesia. ---if you need the paper to give to dentists, or other docs, I can copy it for you and PM it. There was a paper written in 1991 that actually started to distinguish those who have "joint hypermobility" with those who have EDS III, which means you have a truly genetic collagen disorder, because those with true EDS didn't respond to the local........they could give me lidocaine until i turned blue, and without another drug, I'd feel anything they were doing to me......so i haven't had a procedure done with an anesthesiologist or doctor/dentist present who would just let them use a local, unless they wanted one screaming girl on their table! I am also incredibly med sensitive, but have managed to not get sick after having 7 procedures (endoscopies, skin biopsies, one minor ankle surgery, EP study, etc, etc.) done under local, usually with the use of Versed. I always get sick under General, but I'd rather throw up a couple days then remember a few guys sawing up my bones! I always ask them to give me phenergan, but now Zofran along with the Versed, to ensure that I don't get sick. So far so good. It has amnesiac properties that make me forget what I went through in the first place, and it's completely relaxing, I usually end up sleeping through the whole thing, once the meds take full effect. I don't know if you felt the procedure, or what your EDS or joint hypermobility status is, but your anesthesiologist and Dr. Grubb need to be made aware of that situation if they both weren't already. I know you wanted to use as little medication as possible, and that's always your decision. I just wanted to make you aware of this in case it applied to you. You said you felt like you had speed in you, and I wondered if that didn't have more to do with your flight or fight--adrenaline, panic mode kicking in due to pain, since it lasted so much longer than one would think lidocaine would? When using lidocaine with something else, it's never affected me negatively either, luckily i guess, and it wears off much faster than it must have for Emily, she REALLY likes it! Well hopefully the monitor picks up something that will help, or doesn't pick up something that will harm, hope the incision is healing all right. Take Care -Steph

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Do we have a verdict on the bumps? I hope the dr. was able to help you out, and give you some explanation! I also wanted to say that if you took Melissas' (sunfish) advice and took pictures, could you please NOT send them into dinet photos?! Thanks Em, thinking of you! Hoping it's nothing to worry about! -Steph

ERNIE!!! That is truly wonderful news! And I think a GREAT IDEA!! I am so happy that you will have the opportunity to do this! That really makes my day to hear this for you! I often think about giving longer speeches/presentations myself with POTS, and there's no doubt I'd have to sit. So in my situation I think I'd ask for a stool to sit on (or at the very least a chair). On the other hand, do you think you'd want to move around the room at all, perhaps your wheelchair would give you the mobility to do so? (and I know you have the reclining feature) Especially at the end if you want to be near the door or front of room in case people want to talk to you? As for what people think, HOGWASH! we know you better than that (I think I do?! ), look how much you get out and about with your chair now, you seem to be brave enough to use it when you need to, and to be "proud" about it. You have a very valid reason for using it, and if it helps you get through your presentation than I think, so be it. Since your topic is mind, body and health would you be talking about your own self and the need for your chair? That way all questions would be answered without any funny looks, unless you keep your own health out of it, which would make sense as well. You also know by now all the salt, fluid, normal POTS suggestions. I just REALLY wanted to say CONGRATULATIONS! I am so proud of you that you will take on this task, and cannot wait to hear all about it!! Take Care friend -Steph

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