sue1234

Congratulations! And I'm wishing your baby is healthy and loves to sleep, so you can, too!

I did have my aldosterone checked. The first time it was 3, and the range just said normal was <32(?). So I ignored it until I saw a medical article on POTS and the renin/aldosterone system and their POTS patients had HIGHER levels of aldosterone than I did!!! So, I found other places that put an average range of 4-32(?), so asked to be tested again a year after the first. That second test came back in the teens, so that issue was dropped. But, I wonder...if it was soooo low that first time, what if on most days it is always low? That would leave me in this POTS situation day after day. I've about exhausted all of the recommended "specialists" in the deep South around me and I can't fly(waaaayyyy too much adrenaline for that!). So, I just keep on waiting.

I'm the same. My doctors check my catecholamine levels about once a year, as we keep checking for a pheo also. I MOST fit pheo symptoms out of all the adrenal issues: increased b/p, incr. heart rate, HEAT INTOLERANCE all of the sudden, surge of facial redness, and unrelenting anxiety/panic for no reason. It absolutely feels like too much adrenaline, and then that makes me feel lightheaded. It is definitely worse when standing, thus the POTS issue, but can happen when sitting. And, after researching pheos, they can cause a reduced blood volume=POTS! That's why I keep looking for the answer to my POTS, because I do not have EDS, and I didn't have POTS until I was 46 years old. To manage my symptoms, I avoid stressful situations, which is alot. I take Xanax for sleep, but rarely, if I have a stressful day, such as an appointment, I will take a small piece of a Xanax pill, and that will calm things down. I can't wait to see how you progress!

One more thing--I would like to ask you about what your doctor said about the progesterone you are about to start. You said you needed to get through the first 3 weeks on progesterone with feeling tired, and then it would get better. Can you explain that? I have tried progesterone a couple of times before and get that REALLY tired feeling, so end up stopping it within 5 days. If I knew there was a light at the end of the tunnel, I might push through those rough couple of weeks! Can you tell me how the tiredness goes away?

I know I have mentioned to you before that I have delved in this route before. I am interested in how you progress with your therapy. I firmly believe that my problems are adrenal related--just don't know what part!! The adrenal puts out cortisol to help you handle stressful conditions AND it puts out the catecholamines(adrenaline) that CAUSES a stress alert in the body. I swear I am only putting out the adrenaline!! However, when I have my 8 am serum cortisol tested, it is in the normal range. When I had the stimulation test that sees if your cortisol doubles when the pituitary tells your adrenals it needs to put out more cortisol, I did pass the test. BUT, I've had salivary cortisols done probably 7 times over the last ten years, and they all show some low levels. So, I am torn between conventional medicine telling me things are fine with my adrenals, and alternative medicine telling me I am depeleted and need to take cortisol. How I FEEL tells me that alternative medicine is possibly correct. I have literally been living a stress-free life, as I can't stand up long enough to work or sit up when in a stressful situation. I have been "nurturing" myself for 4 years, and nothing has improved. So, I am not so sure that that alone would help my adrenals magically start functioning. So, I am up in the air as to what is real and what isn't. That is why I want to hear accounts of your upcoming journey. I've owned those adrenal books for a few years now, and they make sense. I just don't know if someone like me has tipped over the edge of recovery through plain supplements and relaxation. Most people I've seen on the Adrenal Fatigue forums are feeling bad, but still very much functioning as far as work, etc. I wish I knew.

EM, I will be missing my daughter's graduation this May, also. Besides it being way too "busy" of a situation, it is outdoors and, living in the deep South, the temp will be above what is comfortable for me. I am even going as far as having my mother in law to have the after-grad small party(whe loves doing that kind of stuff!). I even missed my daughter being on the homecoming court due to the same reasons. I have come to a point in this disease that, yes I am missing some of these events, but I still see my daughter everyday in normal life, so these events don't represent what we mean to each other. I am always excited for her to experience these events because they are about her, not me. The first year of this, missing all these things would have crushed me! But, I have come along way in accepting what life has thrown at me. I would like to add, though, that I am not just sitting back and accepting that this is the way the rest of my life will be. I still actively research possibilities and see new doctors if my current one gives up. I even run some of my own labs when I get an idea that a doctor never checked some odd thing. The panic/anxiety is a whole monster of it's own. It is life-restricting, to say the least!

Cat Lady, Why don't you apply to be a substitute teacher? That would give you some idea if teaching is definitely right for you, and you will really enjoy it if that suits you. And, it will give you some income.

I am so sorry you don't have any support. If only one of us lived nearby and could walk/function enough to help you! I know it's not much help, but know we are all thinking of you today and collectively sending all the positive energy we can! Have they done a CT/MRI of your neck to see if there is any kind of spinal issue there? With everything just not working correctly, sounds possible to be nerve/spinal cord related. But, you have a neurologist, so I'm sure he's thinking of that. Just thinking out loud again. I also keep thinking of electrolytes. Have they checked your calcium? Look up hypocalcemia and you'll find alot of the symptoms you are having, especially seizures, weakness, tetany(which affects the swallowing and breathing muscles).

Sorry to hear about that! Please update with news when you/she can.

Persephone, I find that your "perception" of POTS as "beautifully rich, dark, melted chocolate" fascinating, and let me explain why. I have always read alot over the years on vitamins and minerals, and their role in health/disease. For those with EDS, having a collagen "defect", I have always wondered if it was a copper issue, as copper is a mineral that is very closely linked to collagen. To further understand this, copper is highly associated with estrogen, and when we go into menopause and lose that estrogen, our skin loses its youthfulness. And, you see POTS related to dark chocolate--guess what chocolate is FULL of?!? COPPER! Interesting.

This is probably dumb, but I'm sure they checked your electrolytes, specifically potassium??? I know there is a rare condition in hyperthyroid cases where they get hypokalemia paralysis--it just makes me think of your body's reaction. Like I said, just thinking out loud(via computer, that is!) .

Thinking of you and definitely update us!

I am all for good sleep! I use Xanax and it helps, but not perfect. I recently tried Ambien and it worked WONDERFULLY! But, I am scared to death of the side effect of doing something in the middle of the night that I am not aware of--like getting up and taking some other sleep medicine or something like that where I am not aware of not needing to take it! Did that make sense?? I've heard of too many horror stories of people doing things in the middle of the night. I could see me getting up and driving somewhere--AND I don't even drive anymore!!! Maybe I worry too much.... Anyway, regarding fatigued adrenals...I sometimes wonder if all this "adrenaline overdrive(catecholamines)" during POTS is the body compensating for not enough cortisol to get it through whatever it needs to get through. I have read some people explain that in forums for "adrenal fatigue". That could kind of make sense, but I really don't know. IF I knew for sure taking some Cortef would calm the adrenaline part of my adrenal gland, I would take it in a minute! I am all for doing whatever it takes to fix this darn dysautonomia. Please let us know what your new doctor says regarding adrenal fatigue.

I would definitely go in there with an open mind. I've been to holistic MDs in the past, but none were the magic bullet. But, having said that, let me tell you about one holistic MD last year. I told him about all of my POTS problems, and so far, regular doctors had not come up with anything to find the cause or treat. He then wanted me to test for "adrenal fatigue". I did the saliva tests, and showed low cortisol for two of the four samples. So, he wanted me to start on cortisol. I filled the prescription, but never started it. I am ambivalent about this "adrenal fatigue" diagnosis alot of people are getting. I BELIEVE that our adrenals can get overworked and can be the root of alot of our symptoms, however, I don't want to take something like cortisol, that is a strong hormone, without ABSOLUTE medical reason for taking it. I believe some of us may be on our way to Addison's disease(full adrenal failure), but medicine just doesn't know how to test for this in-between phase. It is said that Addison's symptoms show up after 90% failure of the adrenal glands. What if we are sitting at 60% adrenal failure? I am 30 lbs. overweight, have some facial hair, off/on high b/p. According to the saliva results, I need more cortisol. But, my physique screams too much cortisol, but the saliva says not enough! So, I sit on the fence about this "adrenal fatigue'. I guess I want true medical research on adrenal fatigue, and how the medical system can identify and address it. It is like I read somewhere before, if the doctor's waited to treat thyroid until thyroid people would be in a full myxedema coma because of complete thyroid failure, we'd be in trouble! They actually treat people who have underactive thyroid glands, and I'm waiting to see if mainstream medicine will recognize that underactive adrenals might need treatment. Keep us posted!

And, another option might be if they think you show signs/symptoms of Addison's disease. They might be looking at your pituitary if they think you might be having "off" endocrine function.

I just had a colonoscopy two weeks ago and was really worried about all the fluid loss. I actually did really well throughout the prep and the procedure itself. I was surprised, as I was waiting for more lightheadedness, etc. But, nothing. But, you do drink quite a bit throughout the day, and up to 5 hours before the procedure. I made sure to drink a variety of things, like broth and Pedialyte, but nothing sugary like colas, juice, etc. , as I didn't want the glucose rollercoaster. In the morning, the IV starts to rehydrate.

Chrissy, Did you finally go to Kentucky and get diagnosed? Or did you find someone around LA that was that good? I hope I remember is it was you that I had talked to a while back about going to Kentucky to a good doctor...if not, sorry. So, what tests helped you get diagnosed with your Cushing's? I assume it was a 24-hour urine. What size pit tumor do you have? I know Dr. McC is supposed to be the best for that at MDA, so your lucky you live close. I just now reread your original post. Knowing you have been diagnosed with Cushing's, you might be "cycling" between highs and lows(with your cortisol) and maybe you were in a low the other day with low b/p and nausea.

Hey Chrissy, I'm the one from over here near Lake Charles. I was wondering. Have you ever been tested for Addison's disease? I would assume you have had your cortisol checked a few times with the low b/p and nausea/vomiting and stomach pain!!!! Well, you can also add the lightheadedness to the low cortisol list. I haven't found that magic doctor yet around south LA, and it looks like you haven't either.

I don't know anything about Ritalin, but, my gosh, what a smart doctor! I look at all the possibilities as to why I developed POTS out of the blue, and I am always wondering about a few things--fluid balance and mechanics. I have to admit that around the time my POTS developed, my neck was doing some really loud popping/cracking noises, way up at the base of the skull. If you could have POTS related to cranial issues, then I could see where someone like me with weird upper neck happenings could have it related to the POTS. Alot of people here are EDS, which would mean they very well could have upper neck instability. Some people were saying on this forum the other day that it is possible our pituitary(and apparently other brain structures) might not be getting the blood flow needed to function properly. Well, if we are somehow compromising our blood flow into/out of our head, then there are structures in the neck(carotid body??) that tell us about our blood pressure and then tell the body from there to adjust. What if all that is somehow messed up and confusing everything? Sorry I got a little off topic from the Ritalin, but I wholly believe your doctor when he says we need to get to the bottom of WHY our bodies are acting like this. Maybe this is something we need to investigate further.

Congratulations of having an abnormal result!!! I know, we are all weird wanting something to be abnormal, but that's only because we are so tired of hearing we are normal test/lab-wise, and yet can't live a normal life. Let us know how you appt. goes!

I would like to understand body temperature. As I was in the hospital for three days last month to check for an insulinoma(whole other story), my highest temp was like 97.2, but my lowest was 95.5!!! The nurse even took it again to double check! I understand that anemia can cause low body temps, as someone posted earlier in this thread. But, I am not anemic. I take thyroid meds, but my levels are great. And, to top this all off, I don't tolerate any heat in the summertime! You would think with lower core temps, summer would feel wonderful. Not me. So, do we all have lower than normal temps??

I will check into the nephrologist. Erik--you can't imagine how many times I have told my doctor two things related to POTS: I feel dehydrated and I feel anemic. I totally understand how anemia and POTS parallel each other. I have had plenty of anemia panels to check, but all normal. Maybe there is some strange subset of anemia that has yet to be discovered or is very rare and not apparent on mainstream tests?!? It is odd how the list of symptoms for anemia could be superimposed on the list of symptoms for POTS! Forgetting about the urine color issue, do most of you find that you don't hold on to any fluids, whether you drink normal or more than normal amounts of fluid? It's like whatever I drink goes right through me. It's like it doesn't even seem to hang around--just goes straight to my kidneys to be eliminated.

Same here. I don't know why we get short of breath. I do notice that when I am at my worst, I find I am "bracing" my chest. What I mean is, imagine you are playing football(I never have, but picturing...) and you are getting ready to get hit. You automatically tense up your body to help protect everything from the hit. Well, that's what I mean about my chest/shoulders. It happens everyday, almost all the time, at varying degrees. So, in a way it sometimes seems like a mechanical problem for me, not letting my lungs expand well. Anyone experience that external tightness? That has only been happening since I developed POTS. Any, once the adrenaline starts to flow, you can forget it! It is automatically more short of breath!

Okay. Since day one of my POTS(4 years) I have told my doctors I felt dehydrated. Over the years they have done a ton of tests and I am supposedly normal. Once I had a low aldosterone and twice a low serum ADH, but with no accompanying urine testing. Last month I was in the hospital for three days doing a 72-hour fast to check for an insulinoma, as I have fought low blood sugar for many years, but it's been worse in the last year. Anyway, I was getting 3L/24 hours of normal saline, which is a good amount, plus whatever I cared to drink in water or calorie-free drinks. I did drink some by mouth, but not a bunch, as I was off/on nauseated. So, I had to pee in a "nun's cap" in the toilet so they could measure output and I was peeing around every two hours. My urine stayed medium to dark yellow the whole time, even though my input was probably around 3 1/2 liters. I felt AWFUL by the time I was ready to leave, feeling weak and my heartrate going from the 90s to 130s just getting up to the toilet! It took me a full two weeks to get back to not feeling weak. So, yesterday I started a 24-hour urine to check for cortisol, catecholamines, and for carcinoid. I drank my usual variety of fluids that probably amount to 3/4 of a gallon. I had to pee in a cup to dump in the jug and my urine stayed medium to darkish yellow again. Then, I peed in the middle of the night and then again first thing this morning. The first morning urine was ORANGE! You know, normally we all urinate in the toilet where it is diluted with the toilet water, so I never realized how yellow my urine is 24 hours a day! And, no, I'm not taking any B vitamins. My point is, my output COLOR seems like someone that is not getting enough fluid in my body, however, my output VOLUME seems excellent--volume in=volume out. When I went to my PCP after the hospital discharge weakness, he said urine color pretty much correlates with volume status. He did no testing though. He was waiting on the testing they did in the hospital, but apparently was having trouble getting those results. ANYWAY, does anyone else notice that they have what seems like concentrated urine even though the volume is normal to alot? I know USUALLY higher amounts of urine mean dilute, and lower amount mean concentrated. But the first morning urine being orange seems alot like getting dehydrated just overnight!! I think I am going to make an appt. with a urologist, not really to check out kidneys, but more to talk to him about what my fluid status seems to be doing and how that might relate back to my POTS issue. Anyone else notice if their urine color screams "dehydrated", but with adequate intake/output?????

Yay!!!! Sounds like a success story coming on!