RichGotsPots

I was a vegetarian for 6 years, then I ate meat then I got very sick from bad chicken soup, ER sick. Then I became a vegan for two years, got POTS somewhere in the middle of that and then slowly went back to meat. I eat meat once a week about, but I'm 99% off of dairy except for pizza I'll never eat more than 5% meat in my diet, I think that's the health max.. I might try whey protein though which is dairy..

why am I not surprised... Artcles like this should be in the NY Times..

You are dealing with this for so long, sorry its taken so long to get the answers you need! What area do you live in. If you are well enough it might not be a bad idea to get referred to a clinic like Mayo, Vanderbilt, Cleveland or to Dr. Grubb in Toledo..

Hi Lemon, I posted about juicing it really helps boost energy. Doing a juice cleanse is rough. I used to do a juice cleanse but found that also eating big raw veggie salads helped. One note of caution is that the juicing causes like that with that amount causes all the toxins in your body to run for the hills lol so its a big load of toxins on your excretory systems at once.. Sometimes people get rashes because the skin is a big organ that flushes out toxins and sometimes people get flu like symptoms. It all passes after a week or two. One thing that helped me is using a skin brush in the shower to scrub away dead skin every day. Also some people would eat tons of sprouts and 1/2 o of wheatgrass for the chlorophyll and protein... As far as salt, I think it would enhance the flavor of most juices. Tons of veggies have their own sodium like celery and they also have potassium.. There are some supplements I took along with the cleanse like B vit, enzymes, green powder, coral calcium, probiotics and some others.. I remember it helping me a lot the 1st time I got POTS back in 2006 but this time around just boosted my energy..

Issie An ACE inhibitor stands for angiotensin-converting-enzyme inhibitor... ACE inhibitors block the conversion of angiotensin I to angiotensin II.[3]

I found this, I hope it helps : An epigenetic mechanism (hypermethylation of CpG islands in the NET gene promoter region) that results in reduced expression of the noradrenaline (norepinephrine) transporter and consequently a phenotype of impaired neuronal reuptake of norepinephrine has been implicated in both postural orthostatic tachycardia syndrome and panic disorder. http://jop.sagepub.com/content/20/4_suppl/60.abstract Not exactly gene testing but some kind of marker. I have read many studies and I have read awhile back about gene studies with families, but I don't remember if they are from clinics in the states or abroad...

@dizzy- I haven't had my adrenals tested because for a long time I was on prednisone, so then the test wouldn't be accurate, I will test them very soon.. But I think they are fine except under stress... I was tested for gluten but was fine. I do have problems with carbs but I don't think it's gluten I think it's stomach pooling.. There are certain proteins that also affect BP majorlly. I don't eat much dairy or meat maybe once a week but I'm thinking of taking a whey supplement to increase my gluthosine...

I know for I didn't have pots because they used to make us take our pulse in gym class in HS and mine was a perfect 60-70 and only 90-100 after exercise.. Pulse I never had breathing issues until 2006

I agree with everyone on 1. Dying from not breathing and ignorant docs, and losing control ESP with the ones I love as far as saying not nice things... 2. At 21 I developed a feAr of flying and height, which I never had before, germaphobe, general fear of disappointing G-d and the people I love, being attacked or not being able to save the loved ones from an attack or robbery..

I find it depends on the nurse or doc, some find it in seconds some do it 2-3x before they get it..

I recently got Greg Page to say his issues and treatments. He said he was low blood volume and low salt, so he just salt loaded and took florinef off and on. I'm trying to get more info out of him.. But back to Rama's orginal theory, I've reread it and it almost points to not total autonomic dysfunction but sympothetic dysfunctin basically.. but you do mention things in your theory happening in the stomach which are part of the Enteric system of the ANS. This system is very complex and send messages and controls neuro transmitters similiar to the brain's. Thirdly there is a parasympathetic, which has some role in urination and digestion among many others and uses tons of ACh for control. Is they dysfuction on one system or all three ANS systems and how do you tell? If its mostly sympothetic than can't we measure our nor and adrenaline and use these inhibitors when necessary? Inhibitors of norepinephrine release Substance[45] Receptor[45] 5-HT 5-HT receptor acetylcholine muscarinic receptor adenosine P1 receptor ATP P2 receptor dopamine D2 receptor enkephalin δ receptor histamine H2 receptor norepinephrine (itself)/epinephrine α2 receptor PGE EP receptor Stimulators of norepinephrine release Substance[45] Receptor[45] adrenaline β2 receptor angiotensin II AT1 receptor

@Rama- where did you read about the hyperPots and Mast Cell connection? I get tested next week for adrenaline which I firmly believe is a big cause of my problems, yet I'm worried because my BP can drop when I walk and it tend to be high during surges... so dont know what meds will help the most.. I firmly believe that I dont have MCAD though and I've seen tests from 1 person at the Mayo who has HyperPots and thinks they have MCAD because antihistimines help but the test said no. That's why I think maybe there is a link with Histamines and not directly with Mast Cells...

thanks I have since tried them and I use truform 30-40mmHg knee high. I want to get thigh high ones next but trueform doesnt make them. I tried to buy a jobst knee high 40-50mmHg but the measurements were off and the toe was a weird fit.. its hard even wearing the knee highs in this heat, to be honest...

from what i read on wiki: "Some doctors prefer to start patients on Midodrine without the concomitant use of Beta blockers and then add Beta blockers once the dose of Midodrine has been properly adjusted. This gives the Midodrine time to start raising the patient's blood pressure which often helps avoid the hypotension that is a common side effect of Beta blockers. Obviously lowering the blood pressure of a POTS patient would exacerbate any existing orthostatic hypotension." To me it's just a delicate balance that seem like a risk. Most people that have taken a poll on here voted that betablockers and midodrine are not very tolerable. And I'm not sure but I think you have to be weened off of both but what it the side effects are too bad from on then you are stuck on the other without the balance.. If get told to try this combo which I might I'm going to take 1/4 of both doses to start...

sympatholytic means it brings down the NE or adrenaline level and since you tested sky high for that making you Hyperadrenic category that's a good thing. If I test high next week then I'll know not to take any meds that can raise my adrenaline levels..

ugh i noticed even Disopyramide has a side affect of "severe hypotension"

@dizzy- No my HR is high all the time like IST but fluctuates with position like with POTS, but doing any kind of physical activity really races my HR very high but so does adrenaline surges.... I want to get retested for Lyme and coinfections since I had it in 2004 but have found a good doc for it yet. I have had pnemonia and staph so ive taken antibiotics before and they helped.. I dont think my HR is related to an infection but who knows... I have taken Zinc, olive leaf w/garlic,oregeno and spirulina...

how were your angiotensin levels tested, was it during a TTT or blood or urine?

The nohelp was just supposed to be No, I edited it now..

For those of us who have these swings in BP I dont know how BP lowering meds can help..?

wow, great narration! I think I read something about Dr g being a catecholamine expert. But since you are for sure hyperadrenic I dont understand why he doesnt address that more..? Also how does he know that you are low blood volume? I wish for once I would here of one of the clinic thinking outside of the box. really salt loading, water loading, nuun tablets, compression stocking,, these are all the basics.. Cyprohep is interesting though and Propranolol sounds interesting too since its a sympatholytic too. If it doesnt work here's a list I found of all sypatholytic BB: Beta Blocker Non-selective agents Alprenolol Bucindolol Carteolol Carvedilol (has additional α-blocking activity) Labetalol (has additional α-blocking activity) Nadolol Penbutolol (has intrinsic sympathomimetic activity) Pindolol (has intrinsic sympathomimetic activity) Propranolol Sotalol Timolol [*]β1-Selective agents Acebutolol (has intrinsic sympathomimetic activity) Atenolol Betaxolol Bisoprolol Celiprolol Esmolol[39] Metoprolol Nebivolol [*]β2-Selective agents Butaxamine (weak α-adrenergic agonist activity) - No common clinical applications, but used in experiments. ICI-118,551 Highly selective β2-adrenergic receptor antagonist - No known clinical applications, but used in experiments due to its strong receptor specificity.

how's it working still?

I looked up this med http://forums.dinet.org/index.php?/topic/20557-zofran/ and it says on wiki it helps with IBS..

I think CFS is just one of my many symptoms.. but it would help tremendously if I could get over it.

what do you take it for?