toddm1960

Took me 4 years and 30 doctors, and I was the one that found DINET and had to talk my neuro into finding someone to give me a TTT. Even though I've had symptoms of this my whole life, only since 2005 have the symptoms been this extreme.

Just a quick question Julie, you seem to have classic low flow pots. You're already over constricting........everywhere. Is this treatment more for high flow pots or the peripheral poolers? How high is your BP and HR going while you do it? Has it helped at all yet? Also have you been able to start on an angiotensin II blocker? I'm a normal flow person and wonder if we increased ang II while standing. Once again the more we learn, the questions we have. Hope you and Mack are being helped with this.

One other quick point on the turmeric, either take it with, or be sure your supplement has black pepper added. It's need to help absorbsion............which for us could be a whole other post

Well.....well.....nice to see you back rama, and this could lead me closer to whats going on. I took the turmeric (with black pepper) for 3 weeks. I felt way worse, it's taken more than a week to get back to my old crappy self.... This seems to be just like everything, what helps half of us, makes the other half worse. Hope others find some relief from this.

Well for starters......nothing is going to make me look better in a bikini I just wanted to add this would be for the orthostatic hypotensive part of our group. Any of us with the hyperadrenergenic form already over constrict and continue to constrict the more we stand. This does look like a form of tilt training which has worked well for many, I wonder if it's been tested on the non-peripheral pooling part of our group? All we can do it try.....

I think this is a directly related to dysautonomia, remember our autonomic nervous system contols all of the smooth muscles in our GI tracts. The up and downs are just our autonomic nervous systems functioning, then not. I shouldn't sound so absolute, this is just what I see for me, we are all so very different. I have been like this all of my life and what works best for me is 800mg of magnesium and 12oz of prune juice, what makes things completly worse for me is fiber. I really hope you find something that works for you, and it's not gross.........it's just life as a POTSIE

I don't think there's any doubt that as diagnostic testing for mitochondiral dysfunctions gets easier and cheaper than muscle biopsy's are, you'll see more and more of us diagnosed with an underlying mito problem.

Feeling awfull with anesthesia ( I see I'm the first vote ) could point you to a mitochondrial cause of your dysautonomia. Much like statins anesthesia knocks you out and you feel like death. I had PACU nurses pissy with me because I could get up / move / get dressed. I don't think I knew my name for 24 hours after surgery, I was a mess two weeks. Now looking back on how I reacted to anesthesia and statins these are both red flags to mitochondrial problems.

These feelings of loss are all part of the grieving process......it's a good thing, don't fight them off. I'm with Julie....I mean the acceptance part My favorate saying is, there are so many more worse off than me. I'm good here in reclinerville I really hope everyone finds their happy place.

I also get really bad back pain, and mine is soft tissue. It's upper, middle and lower, it moves from week to week. Add this to all of the joint pain and I'm just a ball of fun...... It's part of the reason when people ask how I feel........I tell them like an 80 year old But I will say my back pain is much worse the longer I stand.

Hey Libby, Welcome to the club, we don't let just anyone in here you know....... Excluding the mix and match pupils and the blue fingers, I've had all of these symptoms also. Both the pupils and blue fingers are symptoms of dysautonmia, so don't worry too much about other things going on. I found to never hold any symptoms back from a doctor, if they seem over whelmed it's a good sign you should get rid of them and move on to someone else. Other than that welcome and I hope you pick up little things from others that help you also.

I've been on the magnesium train for around 3 years, mostly because fiber made my slow motility worse I discovered magnesium got things moving. I take 800mg each morning, it's nice to know it could be helping with disastolic dysfunction also. Bananas remember the first rule of dysautonomia, what helps half of us, makes the other half feel worse. I'm in the sympathetic overdrive group so any diolation helps me. ( I'm starting niacin this week also ) You do bring up a good point though for the hypotensive part of our group, be careful with the amounts you start with. Start slow and work your way up.

I keep telling my wife I know excatly what you're going through........

Guess I'll toss in a male side of this story....... I get these same waves of heat, sweating if i stand to long or do alittle too much walking. I keep a tank top and shorts down stairs with me so when I get these I change fast. It looks strange in the middle winter running around in shorts.......but.......it's the wonderful world of dysautonomia.

Everyone here has their fingers and toes crossed for you Good luck I hope it goes well for you.

I picked up 500mg caps, and have been taking one a day for the past week. Haven't noticed any difference yet. What quantities are others taking? I think I'll bump up to two a day this week.

Youtube has it broken down to 9 sections, the graduation story should be on these two links: I wonder how he's doing today?

I think they'll find XMRV behind it all, and I can also add mitochondrial dysfunction in with this.

If you haven't seen it just go to youtube and search on the name. I hope it gives Mack a Boost.

GI problems were the first major symptoms to flair up, and the first to be diagnosed. Fire isn't the esophageal manometry the most fun test you've had?

Hey Emily, Since there is no diagnosic test for fibro how can he be so sure you have it at all? My neuro feels they are learning things about POTS everyday and the pain we all seem to have could be related, it's way too soon to rule out either as a cause. You can add me to the list of very bad joint and soft tissue pain, I have it weather I'm laying, sitting or standing. I hope you can find somethings to make you feel better.

Very cool, but I wonder how dizzy this thing would make me.......lol

My resting heart rate pre-POTS was 45ish, today it's 75ish.

Julie........watch your mouth...... , isn't Dr Stewart in NYC? I'll check the doctors list again, I'm only an hour east if he's in Lyndonville. You might be mixing him up with Dr Bell. I'm 5 years in, tried everything out there and nothing. No change, it waxes and wanes is the best I'll say. You also have to look for the primary cause of your POTS, this can make a huge difference in what and how you react to avialable meds. Good luck pilly hang in there and fight for more answers, I hope you find things to help you.

You hit the nail on the head Julie, I can't use or eat fiber. It just bloats me way worse, it doesn't move. One test to ask for now is a transit time study, this will show you if your esophagus, stomach, or intestines are slow. If you're like me all of them are slow. Whats works best for me is 12oz of prune juice along with 800mg of magnesium, we're all so different though you're going to need to try different things to find what works best for you. I hope you find somethings that help you feel better.