teagirl

These are great suggestions...thanks all!! Hopefully my stomach can show some improved tolerance with these ideas. Appreciated.. Best... Teagirl

Ahh indeed...10g of salt. Thanks! I'm still struggling with the salt intake and stomach issues though...so any suggestions appreciated. Thanks, Teagirl

Hi folks, Mayo wants me to be at 10g of sodium per day. I am using all the tricks...Nuun tablets, pickle juice, Emergen-C...and salting the heck out of my food. But i think it destroys my stomach, as my nausea gets worse the more i consume salt. I am actually trying to figure out if i can do saline IV infusions (at my own cost!) just so i can avoid salt, relieve the stomach issues and hopefully get the nausea under control. I try ginger and other nausea remedies from forum searches...but no relief. It is by far my worst symptom. I have post viral dysautonomia/POTS btw. Anyone have a stomach friendly sodium source? Thanks, Teagirl

Thanks everyone for the helpful replies! Today marks day 8 since my IVIG round was completed. I am just flat out fatigued, and while still early, I haven't seen any noticeable improvements. I'll be patient though. Today I see my Primary doc and I will ask for a CBC blood panel to check on my red blood cells and platelets post IVIG, as I want to see if there was any hemolytic anemia impact (which occasionally can happen). I also notice a mild skin rash on my face and neck that is a new development. To answer some of the questions: My ANA results (test for auto immune antibodies) registered at 0.4 when tested last month. That is within the normal range according to Mayo (<=.12), and as such they did not note any abnormal auto-immune features in my write-ups. I had headaches during the infusions (common side effect) but those seem to have subsided. Ibuprofen helped me deal with that. I also had some itching sensations (again, common side effect) and Benadryl helped me deal with that during the infusions. I'll keep monitoring things over the next week or 2 to see if I show improvements as a result of the IVIG. If nothing else it was worth a try...and perhaps it will help rule out any auto-immune drivers for the POTS. (After all...if auto-immune related, I should benefit from IVIG, right?) Follow-up with Mayo coming in 2 weeks to sort all this out. Will report back then, if not sooner. BTW - still working w/ insurance and Mayo, but good chance this comes out of my pocket. I actually had to pre-pay it since it was time critical (post viral). Total price tag for my treatment as described = $15,000. I only offer this as a reference point for anyone who may benefit from the knowledge. Also, I hope nobody gets discouraged on IVIG if it so happens my results are not stellar. The nurse mentioned countless examples of people who have shown immediate/dramatic improvement. Best to all. teagirl

Hello to all, After a very bad flu virus in August I struggled with acute onset of POTS (although nobody called it that at the time). I was diagnosed in November by Mayo Clinic with "post infectious autonomic neuropathy manifesting as POTS". My tests also showed reduction in postganglionic sympathetic sudomotor function with mild cardiovascular adrenergic impairment and postural tachycardia on head tilt-up (TTT). My hematology, chemistry, endocrine, and immunology test results were all within normal limits, with the exception of slightly low potassium. Worth noting my ANA antibodies measured positive at 0.4, although within normal reference range of <1.1 according to the results. I'm still trying to wrap my head around all this. Mean time my symptoms are full blown orthostatic intolerance (can't be on feet for more than a few minutes), nausea, insomnia, and erratic blood pressure/pulse even in sitting position. I also get bad shakes and tremors sometimes, especially if coming off a bad night's sleep. I am on .05 mg fludrocortisone, between 5-10 mg midodrine 3x per day, and compression stockings, plus increased salt intake. Mayo suggested IVIG with the caveat that it might not do anything, but worth a try. I just completed 5 consecutive days of Gamunex-C (10% / 22gm / 220 ml). (Side note - unlikely that insurance will cover this (!!)...but still appealing). Side effects were mostly bad headaches and fatigue, but that's improving now that I am 7 days clear of the last infusion. So far I don't feel any improvement as a result of IVIG. I can't tell if this is because it's too early, or simply because my main problem is not auto-immune related. Anyone have any thoughts on this based on my profile? Obviously I'll follow up with Mayo in a few weeks but wanted to see if anyone has been down this path. In the mean time my husband and I are also researching means to help with autonomic neuropathy. As many have pointed out in this forum, there are supplements like Alpha Lipoic Acid, Benfotiamine, and Acetyl-L Carnitine that have shown promise in studies. So we're looking to work one or more of those in depending on what Mayo advises in our followup. I know this is a rambling post but I'd be interested in viewpoints on the auto-immune angle, in light of my results above, and likewise any other suggestions or words of wisdom. Like many, I am struggling both physically and emotionally but want to be as proactive as possible with my treatment plan. Best to all. Teagirl

Hi Hanice, KareBear, and Melanie, Thank you so much for your helpful advice and words of encouragement! They are very, very much appreciated. It's comforting to know there is hope. As I begin this journey, I wish all of you the best in yours as well!

Hi all, First post, I could use some advice. 6 weeks ago I had a bad stomach flu - lasted only 3 days, but I haven't been the same since. A week after I kicked the flu, I had a bad case of vertigo, nausea, tachycardia, and shaking. Called 911 when I thought I was dying...they filled me up with IVs and I recovered. (They said I was dehydrated). Same thing happened 4 more times over the next few weeks, and ultimately I was admitted to the hospital for a day. Again, diagnosis of dehydration. A pattern emerged whereby standing and walking for any period of time would bring on the symptoms... They checked my orthostatics (BP, pulse) and noted "orthostatic intolerance" with a rise of 38 BPM in the standing positon. It was checked 3 times. Interestingly, my blood pressure has not changed (it's always been low), but the pulse races in a vertical positon, bringing on all the symptoms. Now I'm unable to walk and I'm in a wheelchair for fear of the full blown attacks. I am nauseated all the time, and I have "bursts" of warm tingling in my head, especially when I try to sleep. I also get tremors and shaking when it gets bad. I've had nearly every test done (MRIs of brain and abdomen, blood tests, urine tests, etc.) but so far no smoking gun. I've seen a cardiologist and my EKG checked out fine. He was familiar with orthostatic intolerance and POTS and ordered a tilt table test, but unfortunatley that won't happen for another month. My husband wants to take me to Mayo Clinic in Scottsdale for full tests, but they say they don't accept patients until a POTS diagnosis has been made. I also just developed a rash on the sides of my face and neck. In the mean time I am miserable and immobile, and losing weight due to lack of appetite. I am also very sensitive to temperature changes. Historically - before my flu incident - i would get 'head rush' when standing up, irratable bowel syndrome, and gluten intolerance. I am desperate to understand what is going on - do these specific symptoms seem like some version of POTS? Also, any suggestions for how I could fast track some type of better diagnosis and treatment? I am located in Northern California. Thanks for any advice. Teagirl