derekliz

Corina, have you tried it?

liz

My md actually offered it to me so I figure I will at least try it. I will definately update everyone.

My POTS dr. is going to try me on Ivabradine as he has had great success with it. I have to order it from Canada and would love some feedback from those in the U.S. who have ordered from Canadian Pharmacies.

Thanks!

Liz

I was given a rx but have not filled it yet. My neurologist who is not a POTS specialist said to start with 1/2 pill. My tachycardia has been stable so i am scared to mess around with a new med. I also do not have low BP,mine was running high and controlled now. Also curious as to how others responded

Liz

I have never heard of it but will definately read about it

Liz

Is this a test that is only available at the Cleveland Clinic and is it typically done on most POTS patients? I am still learning so forgive me if this is a dumb question

Liz

I will definately email my nurse tomorrow and ask her all these questions. I really feel that I have sensitivity to sucralose...time will tell I suppose!

I am so happy for him. Did he give any information about how he is keeping things manageable? do you hve the url to his FB page?

liz

I stopped the gatorade today and maybe it is coincidence but I feel better. Brain fog and fatigue are at a minimum. Walked over 2 miles and worked out on my rowing machine.

I take sodium chloride tablets, they are 1GM each. I am supposed to take 3-6 per day but at the most I remember to take 2. Do sodium pills lower potasium levels? Mine have been normal. If so, would I be ok with just a multi vitamin that includes potassium and eating a banana daily??

Liz

I am going to try to eliminate it and see what happens....cant hurt!

I actually meant to type sucralose and not sucrose....they are 2 different things, right?

There was an article in First for Women magazine about this (I will try to find the online article and post). But in the meantime, i found this http://www.ncbi.nlm.nih.gov/m/pubmed/6337950/

I am supposed to drink 3 liters of gatorade and the first ingredient...sucrose!! The article i have mainly talked about sucrose and fatigue. Any thoughts?

Liz

No Naomi, all the dr's I spoke with just told me that the antivirals would not work. I would say Yes, that I do see improvement with my symptoms.....especially the fatigue. Not nearly as bad as several months ago.

liz

I had recurring EBV. My EBV dna was >200 (266) and I started taking Olive Leaf Extract (pill form) and Red Marine Algae (pill form) and am happy to say that mt EBV DNA levels are <200 now!

The infectious disease dr told me that antivirals would not work.

If you want, PM me and I can give you the dates that I started the supplements, dosage etc.. I do not have the info in front of me right now

Best of luck!

Liz

Mine is completley normal. My first dr said i had very mild mvp but my second dr came back with normal results

Liz

Why is his protocol so top secret....just wondering?

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I have been there as well and while I was very happy with the staff and physician, they were not willing to try to even look for the root cause (if there even is one) They did the U/S, EKG and only a 10 minute TTT (while I was taking the BB) right in the office and everyone was supersweet and Dr. Phillips was very inofrmative.

I ended up contacting another physician, and he and his nurse are AMAZING!! Talked to me for over 45 min before I made my appt. She mailed out a form from Vandy and some other forms and once rec'd, they called to schedule my appt. You have to be off any meds that affect your heart rate for 3 days prior to testing.

I had a 45 min TTT and EKG and they drew the standing norepinephrine (the tech actually has pots so we spoke alot). Once at their office they did the Ultrasound. Good Luck!

Liz

Magnesium Citrate (800mg) is what I take and is shhown to lower bp

I do have HBP(mild) more labile and of course tachy but i do not use stevia.. the metoprolol seems to be helping me quite a bit

Liz

It also is used as pregnancy prevention!

A friend recently started using Stevia while trying to lose weight. He noticed he was extremely fatigued and one morning his wife had the hardest time waking him up. (He has hbp and takes meds). He went to the doctor and the doc feels that he is having a reaction to the buildup of Stevia in his system.

I decided to read up on in it and Stevia can lower BP and it is advised that u that u check with your md before taking it if you have LOW BP!

http://www.webmd.com/vitamins-supplements/ingredientmono-682-STEVIA.aspx?activeIngredientId=682&activeIngredientName=STEVIA

Firewatcher...could you let me know who you see about getting this in the Atl. area?

Thanks

Liz

I totally agree with kimbellgirl Sleep will make all the difference in the world. When I was only sleeping 3-4 hrs at nite then napping on and off all day, I was completely spaced out all of the time. Now I can definately function much better. The magnesium citrate will help with sleep but also lowers BP, so if you have low BP, be careful. Otherwise, Magnesium is wonderful for so many things. I too had sleep apnea prior to my POTS dx. Had a UP3 ( tonsillectomy, uvula removed and pallot shaved) and no more sleep apnea for me. I believe, as do my dr's that the sleep apnea was due to my large tonsils. I do not snore at all now Definately worth having a sleep study

liz

Ambien for me did not work long term. I had a few drs tell me it was not good to take. I was put on Klonopin .5mg (started on 1/2 pill) and i am sleeping so good now! I also take zoloft 25 mg, metoprolol tartrate 25 mg and 800 mg magnesium citrate.

Good luck!

Liz