SarahA33

Hey there, Andy, I was diagnosed with Hyper POTS 2011. I was given a high dose sodium diet, should have bought stock in pedialite and Gatorade, and changed around my med list completely. My daily doses are as follows: TID: Midodrine 10mg, Florinef .005mg (unsure of exact dosage but it's 0.1mg cut in 1/2), Clonidine .2mg. Inderal (propanol) 640mg, Ativan 6mg. PRN: pain med for migraine Take Care, sarah

You may be able to call your pharmacist and just ask her if any of the current meds are safe to tan. I went tanning on Penicillin and thought nothing of it. It as supposed to be 7 minutes but it ended at 4 minutes. I was covered in bumps.. heat rash bumps everywhere. it was horrible. That's why I think it's so important to check with your pharmacist/dr to see what they're advice was like. Sometimes I think my doctor's forget that I'm young and would still like the option to do things like this.

Hi guys, my doctrs aren't crazy about it for their own reasons I think , but they did give me along list of medications that can cause interactions along w/ tanning. Check out the list: http://sun1.awardspace.com/Causes_Photosensitivity/Drugs/Photosensitizing_medications.pdf

Yes, I do work. I was off of work for 2 years and went back 7 months ago. I unfortunately can no longer do what I love and went to school for. I used to work with children with autism. Right now, I have a desk job. Are you working now?

Hi.. I've had so much radioactive dye in me that I'm really surprised I don't glow in the dark. I never had a reaction from the times I've rec'd. Good luck with your test!

Kris, Thanks for the kind words. I've had a migraine that won't let up also. I've been down for the count. I'm sorry to hear you've not been feeling well also... I wouldn't wish this on anyone but it is nice to feel not so alone. Hope things are better for you

cbakl, that's so funny you mentioned that. Zomig was the only triptan that has worked for me. I can no longer take it because it raises my blood pressure also. I receive migraine treatments sometimes. Some migraines last for 20+ days and I just give up and surrender. Have you had any of those? Take care, Sarah

Kris, How are you feeling? I've been thinking of you but have had a really, really bad week. Hoping you are doing well. Fingers crossed you get some answers with the glucose testing and the 5h. Take care, Sarah

Hiya, Chaos and Goawaypots, Chaos yep I agree with you about the initial dose of Inderal for migraine.. but I take 720mg (240mg tid) and it does help with the migraines somewhat I think as well as the bp/hr.. This is for anyone interested looking at this medication for migraine use. This little synapse was taken from www.migraine.com which I find a lot of great migraine topics on. "Inderal LA Dosage for preventing a migraine attack: The starting dose of Inderal LA for preventing a migraine headache is usually a single 80 mg capsule taken once a day. Most people respond best to between 160 mg and 240 mg once a day when taking it to prevent migraines. If Inderal LA is not helping to prevent your headaches after four to six weeks, talk with your doctor about trying a different migraine medicine." Anyway, I could see how an initial low dose for POTS patients would be a whopping amount. On ncbi's website I read a great deal about low dose propranolol when used as a migraine abortive as well as a preventative. I guess anything that could potentially help with a migraine is worth a shot. This is an old 2 pg case report but was the first time ive seen it used in abortive measures. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1021497/?page=1 Sorry to hear that you both suffer from these awful things too! Be Well, Sarah

Hi Joann!!! Hpoe you are well! I think a lot has to do with the fact that our bodies are constantly changing. Our autonomic nervous sytem fires off whenever it feels like it (has a mind of its own, i like to say) and that when we have a test that is made to produce autonomic responses it probably takes a great deal of time for some of us to return to our normal icky feeling state. Just my opnion though

I forgot to add that I have had botox twice. It wasn't beneficial for me completely but I did notice some improvement. the reason I asked about the betablocker is because Inderal (propanalol) is a Beta Blocker that is also prescribed for migraines as well. I even believe off label it is given for anxiety.

Your welcome Okie! I hope If you decide to see this doctor that you can get in fairly quickly.

Christy, Is Chlemsky at the Cleveland Clinic? I'm just wondering what specialty she is. You probably felt the weight of the world just drop off your shoulders when she hugged you and assured you that this would get figured out. It's doctor's like that, that we need in the medical community. She sounds like she really cared about your son and his health. (and cared about you, too!)

Arizona, What an awesome topic idea! Kudos! It's very easy to get caught up in referencing negative doctors appointments (mainly because for most of us the bad outweighs the good). But, There is always a silver lining (even if you cant see it at the time) and I've mentioned previously that POTS has taught me incredible lessons of being humble, patient and empathetic. Also, what an awesome new internist you've linked up with. She seems willing to not only learn from you, but to research and help others because of you.

Sorry... just saw that he left already. Im assuming he had an attending or was practicing under an MD.. maybe you could write that doctor a letter explaining your situation and how his resident that just left, sort of left you without many options.

Khaarina, Has your current dr. (resident) left yet? Maybe he could write a letter to your new doctor about your medical history and testing, etc.. or even better, maybe he could recommend someone and give him a call. It must feel really scary right now for you to think of starting from scratch again. I'm sorry. Where are you located? I can re-post a list of doctors by state that specialize in Autonomic Dysfunction if you interested. Good luck to you and everything will work out Did you ever see Finding Nemo... "Just keep swimming, just keep swimming.." That's my motto!

GN, have you thought about giving your cardiologist/neuro/whomever completed the test a call this morning to explain your symptoms? I didn't have any muscular pain but then again I couldn't stand up without my heart rate shooting up. I had a squeezing/tightening in the chest probably due to the extreme tachycardia. Glad to hear the beta blockers have kicked back in but maybe you should think of giving them a call just for your own reassurance. ::hugs:: feel better and let us know how it turns out okay?

Ashley, I'm SO glad that you were able to find a cardiologist who knew about pots and dysautonomia. Im hoping the midodrine is helping you? I am hyper but am tolerating midodrine well. The flushing from the pots but goosebumps from the midodrine isn't very fun.

Hi Christy! Hope all is well. thx for adding gi

Im not a doctor but it sounds like blood pooling to me. What kind of chest pain are you experiencing? I frequently get feelings like someone is "squeezing" my heart

GN, they really need to come up with a better test, lol.. Your cardiologist is familiar with POTS it sounds like which is awesome. Do you mind sharing what medications he has you on now?

I've always wanted children. This was one of my biggest fears when being diagnosed with hyper pots.. But, My doctors have told me not to make pregnancy part of my 5 year plan...which Is their opinion and not their decision. We've been very clear about this. Hang in there MK girl... Talk to your doctor about all of this like Katy suggested.

Hi Goawaypots, would you mind sharing what beta bocker your on? sorry to hear you have migraines, I suffer from them daily and they are unbelievable painful. Good Luck, Sarah