StacyRN

Thank you! Sounds wonderful!

Just a thought... are you sure you didn't have a virus or something that hit you suddenly? That sounds absolutely horrible!!!!!!!

If your catecholamines were normal... did you have them supine and standing? They're usually normal lying down, but go up when standing to at least 600 if you have hyperadrenergic POTS (according to Vanderbilt). I would ask my doctor if I could try clonidine for these episodes, I don't know if that's what you have going on if your cats are normal... but clonidine is what helps me with the hyperadrenergic symptoms... don't know enough about your case, but looks like you see Dr. Grubb, so you should be in good hands! Also, maybe get your thyroid checked? It can cause hyperthyroid symptoms that are much like hyperadrenergic symptoms. Otherwise, sounds like POTS... and I'm finding out that no one is the same, we're all a bit different in how our POTS affects us.

Not so weird that bp is higher standing than laying down, because pheos are very sensitive to being manipulated, and spew out more stuff when you move around, or they are compressed, etc. Also, most docs say it's high epinephrine you look for, but NOT true, it's the Norepi that's high with a pheo. Familial type pheos have more trouble with epi, and some do both, but the majority is Norepi. The blood sugar and calcium could be from a tumor of the adrenal CORTEX, which is the outer layer of the adrenal gland... but the catecholamines come from the adrenal MEDULLA, the inner part. Pheos are adrenal medullary tumors. The adrenal medulla, under normal circumstances, produces norepinephrine, which is converted into epinephrine. The epi goes into the blood stream and is the major "fight or flight" hormone that produces the major sympathetic nervous system response to stress. Norepi mainly stays near where it is produced, isn't the major sympathetic hormone. That's why you can tell there's something very wrong if you have lots of NOREPI in the bloodstream. Being that they are fatal, in that they cause malignant hypertension and eventual cardiomyopathy and heart failure, I think it's important to rule them out for anyone who has hyperadrenergic POTS symptoms. And you know if you have them... believe me!

My tumor is small, but they said "significant". In fact, the literature says that very small tumors can make people very very sick. It's 2.1cm by 1.8cm by 1.5cm. The thing is, my urine metanephrines were extremely elevated, and all the research says that if the urine mets come back negative then it is a definite rule out for a pheo. I do have hyperadrenergic symptoms throughout the day, even lying down... chest pain, hypertensive episodes (even though I normally have low normal bp). Clonidine suppresses the catecholamine effect somewhat, and has helped me alot, but I find that I need to keep increasing my clonidine dose, because it's just not doing the trick anymore... it helps a little, but in an hour or two I need another one! To check for high norepi levels, they do a blood test, first lying down for about 10 minutes, then after standing up. My norepi levels at Stanford went from 604 pg/ml (supine) which is quite high already... to 1,231 standing. To diagnose hyperadrenergic POTS, the standard is norepi greater than or equal to 600 while standing. Then, at Vanderbilt, my supine was 311, and standing 1,459. So they said I definitely had the hyperadrenergic POTS. Apparently 90% of POTS patients have the partial dysautonomia (PD) type, where you have mostly LOW bp and fainting. I was in the other 10% that has HIGH bp and near-syncopal episodes but I have never lost consciousness, although some do. My bp is all OVER the place, sometimes 90/60, sometimes 170/115; sometimes very narrow, like 115/98. After you are diagnosed with the high standing norepi levels by blood test, if you want to check for a pheo, they need to do 24-hr urine OR plasma metanephrines. They check epinephrine, norepinephrine, dopamine, metanephrines, and VMA. If that is positive, they should do an MRI with contrast, of the abdomen and pelvis, to check for adrenal tumor or "paragangliomas"; pheo's are made of chromaffin tissue, which secretes mostly norepinephrine, and that chromaffin tissue can be not ONLY on the adrenal gland in tumor form, but also scattered all over, anywhere from the neck down to the groin area and are called paragangliomas when they are found somewhere besides on the adrenal gland itself. Only 2% are found in the thorax, and 1% in the neck region, so that is why they do the pelvis and abdomen, as 97% are found there. After they found my tumor, my GP said "You are going to an oncologist, we're not going to mess around with this any more!" My oncologist feels it is most likely a pheo, so is doing a nuclear med scan called an MIBG, which is specific for pheos, and scans the whole body to make sure there are no paragangliomas contributing to the problem as well. That's as far as I've gotten, we'll see what the MIBG shows, it will be done on Oct. 13,14 and 15th (3 days of scanning). Get the results on the 20th, so will let you all know what they find... However, they DO say that if the urine or plasma is negative for metanephrines, you do not have a pheo. Xanax would not affect the results, I asked the oncologist because I was on clonazepam at the time and he said that would not affect it. Only things like blood pressure meds or beta blockers might affect it a little, or not at all, but I was off propranolol and clonidine for 3 days before my 24-hr urine test. (And thought I was going to die, my bp went so high!!) I just want the word spread on this, because docs don't seem to know much about it... they say it's so rare, so they don't bother checking for it, but like I said earlier... most of them are found on autopsy!!! They are fatal, and worth ruling out, and I bet my life they are more common than is known about.

Read my other recent posting... it is my opinion that anyone with chest pain, hypertensive episodes, and hyperadrenergic POTS should have a pheochromocytoma ruled out... because they are FATAL. My oncologist told me that, because I have had all these things over the past year of being diagnosed with POTS, and I have an adrenal tumor which they are pretty sure is a pheo, and I'm having a MIBG scan this month to for sure diagnose it before they remove it. I feel so strongly about this... they should NOT just say, oh well, it's part of pOTS that you have chest pain and hypertension! It could be a pheo, and it could be damaging your heart. I'm an RN, and I say most docs are wrong on this, and I think they'll find it out in years to come, but it will be too late for us. We need to be proactive NOW! Make them check for a pheo!!!

I am having an awful time being patient with doctors who say that it doesn't matter if you are hyperadrenergic, or that it's just part of POTS, etc. I have been told all along that it didn't matter, but I pushed for the tests anyway, and found out I was in the 10% of POTS patients with very high norepinephrine levels. Well, being a nurse, I didn't let it go at that. I asked for a 24-hour urine test to check for metanephrines, which is diagnostic for an adrenal tumor called a pheochromocytoma, which is a "rare" tumor that secretes large amounts of norepinephrine. They didn't want to do the test, but I said, Hey, I have to live with POTS for the rest of my life, and if there is even a small chance I have a pheo that could be causing this, and that can be taken out and I would be fine, I want to rule it out!!!!!!!!!!!! So they did it. Guess what? My normetanephrine level came back 3 times the high normal! My doc didn't know what to do with this info, so I got on the web and found the USC website which knew a lot about adrenal tumors, so I faxed them all my lab results, and within an hour I got a call from them saying, "You need an MRI!" So I got my doc to order an abdominal and pelvic MRI, with contrast. GUESS WHAT?? I have a left adrenal tumor! My doc said, enough of this, I'm sending you to an oncologist! I'm having a MIBG scan in 2 weeks, which should be diagnostic for a pheochromocytoma! They say there are only 500-1,100 cases diagnosed in the U.S. every year, it's that rare. Well, my theory is that many people with hyperadrenergic POTS have pheos and don't know it, because no one will run the tests! I think that in years to come, when it's too late for us, they will make this link. Do you realize that most pheos are diagnosed on AUTOPSY??!! What does that tell you? My oncologist said he could not believe that no one had worked me up for a pheo before this, as all the symptoms pointed to one... he said they should be ruling out pheos before they just say you have hyperadrenergic POTS and leave it like that... because PHEOS ARE FATAL!!!!!!!!!!! The docs tell us that POTS isn't dangerous, just annoying... but hyperadrenergic POTS is something else... it is the high norepi levels that cause death early by causing malignant hypertension, and damage to the heart! I've been diagnosed with POTS for a year now, and it's only because I've researched and asked for things that anything has been done to help me. And I now have a pheochromocytoma, which they say are so rare, they didn't even want to check me for one! Please, all you hyperadrenergic POTS patients out there... this is serious. You need to ask for the tests, and don't take no for an answer!!!!!!!! Thanks for listening, I finally found someone to help me... and you need to too! Stacy

I believe if you have the neurogenic type of POTS things like Wellbutrin may help, I don't know. But if you have the hyperadrenergic type, where you already have too much circulating norepinephrine, then Wellbutrin could likely make the condition worse! I sure wouldn't want to try it!

Hey Firewatcher, thanks! I wasn't even thinking about the narrow pulse pressure being classic for hypovolemia!!! The saline bolus I got at vanderbilt did help... but I've read articles saying that drinking oral fluids help more than the IV fluids, if u can get that much water down... guess I'll try to be better at gulping down the pedialyte! I get it in the baby section of Walmart, it comes in those little powder packets u add to water now! less sugar than gatorade... kind of expensive, tho...

Eligiamore, what you are describing sounds like hyperadrenergic POTS. Sounds like your catecholamine levels are quite high. This is what produces the anxiety-like feelings. Clonidine blocks the norepinephrine response, which helps that feeling. Hypotension isn't really a part of POTS, it is another form of dysautonomia, NMH (neuromediated hypotension)/ orthostatic intolerance. Part of the definition of POTS is the heart rate increase >30 bpm or 120 bpm within so many minutes of standing "IN THE ABSENCE OF HYPOTENSION." That is what the research articles say anyway... It is normal with POTS for your systolic bp to remain the same or decrease slightly upon standing, and for the diastolic to increase by about 10 mmHg. So the blood pressures you reported are consistent with POTS... if you had hypotension you would have another dysautonomic component going on as well... does that make sense? Ram... tell me if I'm wrong, please!

For me, they gave it to me as one of my med trial drugs, so I didn't know what I was taking at the time. My heart rate and bp were not affected, they were as high as usual. But subjectively, I felt less weak, less brain fog, able to stand longer. I don't know why! But Dr. Raj said he wasn't surprised, that a lot of POTS patients had that response to melatonin. It is a major drawback that you can only take it before bedtime, because that doesn't help me get through the day! But I take it anyway, but haven't noticed much difference when I only take it at bedtime. The thing that helps my jitteriness, chest pain, and anxious feeling is clonidine.

I was in the Vanderbilt study for 2 weeks at the end of April. I was impressed with the staff, and glad to be a part of POTS research. I didn't hear anything while there about trying methyldopa... I did just finish trying carvedilol, at the lowest dose, which is similar to labetalol in action, alpha AND beta blocker. It made me unable to function! I felt like a huge lump of lead. If the roof had fallen in on me, I don't think I could have moved! So I stopped it, and am back on propranolol. I have high plasma NE levels: supine 604 pg/ml; standing 1231 pg/ml. I have all the hyperadrenergic POTS symptoms. I'm curious to see how the methyldopa works... keep us informed! I LOVE my clonidine, can't live without it, and Klonipin added when it gets really bad. Also, Vanderbilt found that melatonin helped me greatly, symptom-wise.

Hey, thanks for the update! What's a clonidine suppression test, and what does Cymbalta have to do with norepi levels? (This is why I'm not a doctor, don't know everything! LOL!) Stacy

Vemee! Got a question! You said your standing norepi level was over 2100? My understanding is that anything over 2000 they are very careful to try to rule out a pheochromocytoma (adrenal tumor which secretes norepinephrine)... have you had test for a pheochromocytoma?? StacyRN

Cat Lady, I was on my beta blocker when I had the test, just hadn't taken it the morning of the test. My doc didn't mention that it would affect anything... my results were still high... let us know how it comes out! Do you see Dr. Friday? You'll have to tell the lab at Stanford how to do the test, cuz when I went in the lab techs had never done it before Stacy

Thanks, Flop! What a great idea! I'd never heard that before, but it makes perfect sense, and I have noticed I feel better when I drink something ice cold! How clever! You should put that on the dinet website under things that help! Stacy

I have hyperadrenergic POTS. I was on klonipin and propranolol, and after being diagnosed with hyper I was started on clonidine also. The clonidine made a huge difference for me, I have more good days than I've had in months since starting it. Might not work for everyone, but sure works for me! Worth a try! Good luck, Stacy

I really think you should add AGE to the survey... I want to know if all the skinnier ones were young!

I want this test!!!!!!!!!!!!!! The website: ans-hrv.com has an incredible video about it (kinda hard to understand without a medical background, however...) I am going to Vanderbilt for a research study on POTS next month, and I'm SOOOOOOOOOOOOO hoping they do this test! The website says Vanderbilt University is one of the centers that has the software for it, so I'm hoping they do... It is AMAZING what this technology can tell you! Does anyone who's been to Vanderbilt for a study know if they use it?? Stacy

To Notgivinup, and Vemee: Hi, sorry it's been so long! Wow, Vemee, standing levels over 2000??! Whoa! Anyway, I have to give you an update on the clonidine... it has helped me immensely! I have had more "good" days since I started the clonidine than ever before! Any luck getting your doc to let you try it? Which doc are you seeing at Stanford?? Dr. Karen Friday is the best for POTS, and certainly she would give you the clonidine! She had absolutely no problem prescribing it for me! Maybe you could give her a try... she's so hard to get in to see, however... Let me know, did you get the clonidine? Did it help you if so? Stacy P.S. the bad news is I'm having to wean off all my meds, because I'm going to be in a study on POTS at Vanderbilt next month, which is very good news, but very hard going off my meds! I will miss my clonidine

Carinara, You sound like you are going to drive yourself crazy! I know what that feels like, when I was working I was always stressed out about "should I call in sick? should I just tough it out? what do I do? and then when I would call in sick I would drive myself crazy with "maybe I should have gone in to work!" I could just never relax with any decision, because I was so worried all the time! That sounds like you, too. I finally had to lose my job as a nurse because I couldn't do the 12 hour shifts anymore, so I'm on disability now. And that could be an option for you. However, it really sounds like your boss likes you, and he said he didn't want to lose you! The law states that if you have a medical condition your work is required to make reasonable accomodations for you. That's by law. But it sounds like if you talked to your boss, he sounds like he might not have any problem working with you so you can do your job with less stress, because the stress seems to be making you way worse! Can you get a medical note stating your diagnosis and take it to your boss, tell him you love your job and want to continue working for him, but need a few accomodations for the times you feel awful? You might have more good days if you got rid of the stress by being open with your boss... just a suggestion, because I'd hate for you to lose your job because of anything I said! But you know your boss better than anyone, and only you can decide what's best to do. I just think you're driving yourself crazy, and I hate to see you continue in that state! It sounds like the stress is making your POTS so much worse... Let us know how you are doing, ok? Stacy

I get these episodes too, where bp will be normal, and then after standing for a few minutes it goes up temporarily... like tonight it suddenly went to 134/110. Weird, but it does happen. It's just part of the autonomic nervous system trying to balance out and being unable to do it. About the tingling in your scalp, you don't by any chance take midodrine, do you? Stacy

What it sounds like to me is Hyperadrenergic POTS! I get the same thing. Sounds like excessive sympathetic nervous system stimulation. You should look into getting your catecholamine levels checked, they take your blood lying down and then standing up, and measure the norepinephrine levels. Look into it, I think you may find that's what it is... clonidine helped my episodes a lot, my doc prescribed it after finding out I was hyperadrenergic. Hope this helps! Stacy

Jeff, It's an HONOR to be able to thank you for the video you made... whether or not dysautonomia contributed to Brittany's death, it was obviously something she LIVED with, and YOU live with, and you did an awesome job of presenting the topic of dysautonomia to the public!! I have forwarded this video to all my friends, physicians, and put it on my FB page, because I think everyone should see it... not just because Brittany was famous, but because you did such a great job in helping dysautonomia awareness, and people will watch it because your sister was a much-admired actress... THANK YOU again for making the video, and I am also so sorry for your loss... I also love your outlook on life with dysautonomia, and your faith in God... you are an inspiration!!!!!!!!! Hugs, Stacy

Ericka, I couldn't believe it when I read your post! I am so glad I'm not the only one!!! My friends all think it's hilarious what POTS has done to me, because I would NEVER go a day without showering, my whole life! if I could help it! But since POTS hit hard last September, I shower twice a week at the MOST! Many weeks only ONCE! Aaaaaaaaaggggggggggghhhhhhhhhhhhhhh!!! I even have a shower chair, which helps immensely, but the hot water still gets me. Before the shower chair, I would stagger out after a minute and have to lie down on the bathroom floor naked (lovely picture, sorry!) until the blood flowed back into my head with a whooshing sound in my ears... then it was a struggle to get back in to rinse the shampoo out... sitting down of course... Now that I have the chair, it helps me get through the entire process without the near-fainting episodes, but it's MISERABLE! So I avoid it like the plague... My heart rate goes up to the 170s, and BP won't read, and I have to lie down afterwards for the rest of the day because it wipes me out so badly... so I usually shower Sat. night before church on Sun., and then, if I have to go into town the rest of the week I put on a hat! I don't work right now, so that helps, and I avoid social situations with anyone who doesn't know me well, and that's pretty much how I handle things these days... It amazes me, after such an active life before, that the simple act of taking a shower, which I SO took for granted, can be such a traumatic event now!!! Thanks for your post, it helped me feel less alone! Stacy