Birdlady

What you are describing sounds like it could be low cortisol for sure. I'd try to find a doctor to do a low dose ACTH stim test and then seek treatment if you fail. I personally have found this website/forum invaluable! http://www.addisonssupport.com/ Addison's/Adrenal insufficiency can be an underlying cause for POTS. If you find that's what you have, then maybe the "POTS" will go away with treatment. Unfortunately I wasn't that lucky!

Looks like you are gluten intolerant and should probably give a gluten free diet a chance for a few weeks to see if you feel any better.

I definitely understand where you are coming from. I think a lot of us go through what you've described because this illness impacts younger people and we are told that we are too young to be sick. I purposely avoided doctors for a very long time because of all that nonsense. The problem I have with the dysautonomia label, like other catch-all illnesses (CFS, Fibromyalgia), they start to associate every single symptom we experience with that label rather than a symptom of another problem. Because of this lumping together of symptoms, I think that will further set us back with other UNdiagnosed conditions. We all might have dysautonomia, but maybe we are also nutritionally deficient, anemic, have sub-clinical hypothyroid and/or we have a rare genetic disorder. If the doctor simply puts the dysautonomia label on us and let us go on our way without testing for the above conditions, we essentially have been misdiagnosed. I hope what I am saying makes sense. There are a lot of causes for POTS-like symptoms that I think doctors should be checking for in every single person they dx with POTS or dysautonomia. This is just some food for thought!

I found the last question on the poll rather interesting. I know that I'm probably one of few on this forum that feel this way, but I don't really think getting the dysautonomia diagnosis is the answer at all. For me it only raises more questions. Why is my nervous system reacting in this way? I feel that our problems are caused by something else that isn't being diagnosed properly in the first place. God only knows what that is and it's obviously different for each of us since we all need different treatments in order to feel better. For me I was first diagnosed with adrenal insufficiency and when florinef didn't help, that's when I got the POTS diagnosis. My first symptoms of POTS/AI were in my early teen years shortly after I hit puberty.

I've had a lot of exposure to amalgam fillings and it does seem to correlate with times where I was getting progressively worse and worse. Now I have other health problems (adrenal insufficiency), so I can't say that all of my problems are strictly POTS. I finally decided to have all 8 amalgams removed about 2 years ago and started detoxing. The detoxing program was too hard on my body because I was yet undiagnosed with adrenal insufficiency. I really think heavy metals play a role into all of my illnesses and not just POTS. Quackwatch is known to just deny anything that might be remotely hazardous to your health. I have a hard time taking anything from that site. I always ask myself these questions when I look at a website like that. Who stands to gain most from this info/cover-up of info? Who are funding these studies? etc etc Nowadays children and pregnant women aren't supposed to get amalgam fillings. I believe that went into effect last year some time. Well I had a ton of amalgam fillings as a child, but since that recommendation wasn't put into place until recently, does that mean it was safe back then? Obviously not. Everyone is different with how much exposure they can take before it causes problems.

The only thing I can think of off the top of my head is that perhaps you are developing chilblains? Usually they develop on your feet or hands though, so I guess it depends on where your rash is at. Beta blockers can lower circulation and it may cause chilblains to develop which look like a shiny red bump. They can be itchy or even painful. Here's some info on them. You can do a google search for some pictures of them. http://www.patient.co.uk/health/Chilblains.htm

Thank you so much for responding. This heat wave is absolutely killing me. My BP is normally pretty darn low and I have seen it drop many many times as I stand up. I thought that was my sole reason for having the increase in heart rate. In the beginning I thought treating the adrenal problem would fix all of this, but it hasn't. The results of this tilt test actually shocked me. I figured my BP would have dropped but it didn't until I was administered the nitro. I am on hydrocortisone for adrenal insufficiency. Even though I was never confirmed as having Addison's I think I was on my way as I had dark tanning and had no ability to handle stress. I would literally just collapse out of panic. The one thing I am noticing on the beta blocker is an incredible amount of fluid retention. Add in the warm weather and I feel like a balloon that's ready to pop. Is this a normal side effect or something I should be concerned about? Unfortunately like I said before nothing has been tested. I had the TTT and he said I definitely had POTS and he just started handing me pills. First it was Midodrine, which I took for a short time. It didn't do anything for me. Then he wanted me to try Prozac, Paxil, Adderall and then a muscle relaxer. I refused to take all of those. Increasing my salt intake makes me even more bloated. Ugh. I can easily gain and/or lose about 10 pounds in 3 days, which is quite frustrating to say the least. I'm going to buy some compression stockings and see how I do. My calves are very swollen right now. Does that go along with pooling?

Anyone have any thoughts whether this tilt test is consistent with hyperadrenergic POTS?

Hello everyone. I'm a newbie to this forum, but not to POTS. I've been suffering with this for years and years. I wanted some unprofessional opinions on my TTT. I found my doctor through this website, but I haven't been too impressed with his testing. He doesn't do the extensive testing that I've seen some of you go through. Part of me thinks that I need to find a new doctor, but...I hate having to "start over" with yet another doctor. I'm sure some of you can appreciate that. When I had this TTT done, I was on 25mg of Hydrocortisone/daily, 1 tab of florinef, 1 spray of DDAVP and hooked up to a saline IV. Start of Test (SUPINE)==> BP 112/65 HR 82 Tilting==> Each BP/HR represents 1 minute of tilting. 130/83 HR 85 130/97 HR 112 -------- HR 117 137/88 HR 117 -------- HR 120 117/71 HR 121 -------- HR 116 112/90 HR 119 -------- HR 120 110/80 HR 124 -------- HR 125 128/88 HR 126 -------- HR 133 -------- HR 133 123/83 HR 133 123/80 HR 133 -------- HR 136 118/81 HR 134 -------- HR 134 128/90 HR 147 -------- HR 143 129/80 HR 142 -------- HR 137 Started tilting back down for Nitroglycerin==> 128/76 HR 113 -------- HR 109 Tilting Back Up With Nitroglycerin==> 124/65 HR 145 97/55 HR 164 108/70 HR 169 99/49 HR 175 95/58 HR 175 140/80 HR 173 Starting Tilting me back down==> 140/77 HR 137 -------- HR 113 Test Complete. PHEW Why did he give me the nitroglycerin? I clearly met the criteria for the POTS diagnosis with 2 minutes of tilting. Since my BP dropped with the nitroglycerin does that mean something? Immediately following the TTT, he told me that I needed to be on midodrine because my blood pressure dropped. He gave me a prescription for this a few months before the TTT. I told him it made me feel just awful and it did nothing for the tachycardia. I think it made my heart even worse if that's possible and I was very anxious while on it too. A few weeks later, I begged him to go off of the med and he agreed, tried giving me a list of other meds which I refused. Then I asked him if I could just try a small dose of beta blocker. To his surprise, this had been the biggest breakthrough with my POTS. Because of the success of the beta blocker, he changed his tune and said that maybe I have the hyperadrenergic type of POTS. He no longer tests plasma norepinephrine levels to confirm that because the normal range is too broad and he never found the results particularly useful or diagnostic. What do you all think of that? Should I push to get these tested while off the beta blocker? I know you aren't doctors, but if this were your TTT what would you do? Do you think based on TTT and the fact that a beta blocker helps that I could have the hyperadrenergic type? I hate being a guinea pig and I fear this doctor just doesn't do enough testing. Thanks for reading!

I give myself subcutaneous injections of 1000mcg methyl-B12 every day and it has taken away the tingling and numbness in my legs/feet/hand. Thankfully when this first developed, my natural doctor knew to test me, so I got relief right away. There is a doctor out there (Dr. Neubrander) that says IM injections are too rapidly dumped by the body and he recommends them subcutaneous, so that's what I've been doing. You might want to check out his information. It is meant for children, but I still believe it applies to adults. Right now I am looking into other nutrient deficiencies as the underlying cause of my POTS, but doctors don't want to test the most basic nutrients.

My symptoms progressed, but it was because I had other undiagnosed conditions working against me! Now that I've got some of those treated, I am doing better with the severe fatigue, nausea, brain fog. I think we should all be cautious of assuming that every single symptom we suffer from is actually POTS or dysautonomia. It's really easy for doctors to just shove all of our complaints as complications of POTS. My PCP and EP tried telling me that MVP was the reason for all of my problems (fatigue, racing heart). That was until my echocardiogram showed no MVP. Whoops! Then they had to start looking for other problems, but if it had shown up they were fully prepared to blame MVP. I found out within the last year that I have adrenal insufficiency, sub-clinical hypothyroidism and several food allergies that mimic a lot of POTS symptoms. Remember that POTS is JUST a collection of symptoms! Those symptoms might just be something else too, which is what happened with me! If you have gastrointestinal problems, I suggest getting tested for IgG food allergies. I finally figured out certain foods were causing A LOT of my gastro symptoms. Good luck everyone.

My results were more like the previous poster's. Some harmless arrhythmias, but mostly sinus tachycardia. My heart rate was as low as 55, but as high as 160. I also kept a symptom's journal for the doctor and when my heart rate was increased, that's when I'd report shortness of breath and dizziness etc. Of course that's when I was standing...

I give myself subcutaneous injections of B12 every day because I have problems absorbing it through my diet. I haven't really noticed an increase in energy, but that wasn't the sole purpose of it for me =). However, it has helped tremendously with numbness and tingling in my legs, fingertips and feet. Once you start supplementing/injecting yourself with B12, serum levels are no longer an accurate measurement. You have to test urine MMA or serum homocysteine levels. There's a great book that talks about this called Could It Be B12? An Epidemic of Misdiagnoses. Good luck!

Have you ever been checked for any food allergies or intolerances? I was tested by one of my hormone docs and about 15 foods came back positive, so now I avoid the ones with the highest responses (wheat, dairy, yeast, eggs) and I'm doing A LOT better with the bloating. This might be something to investigate.