ks42

Elevated standing norepinephrine levels (noradrenaline) with normal sitting levels can be a very common sign of the Hyperadrenergic POTS subtype. Although, I've known some people who just have elevated norepinephrine with standing but don't have classic HyperPOTS, so I know it's all very individual. In an adrenal tumor, it's more typical for your catecholamines (especially norepinephrine) to be elevated all the time, pretty much 24/7 while sitting, lying down, and standing (I say usually because I'm sure there can be weird exceptions). A lot of us go through testing for adrenal tumors (scans, blood and urine metanephrines) due to elevated catecholamines, but my one POTS doc said that it's pretty rare to find tumors in POTS patients.

looneymom - thanks for the info. Clonidine is something I had wondered about, actually, especially with my elevated adrenaline levels, though I hadn't thought about it potentially improving sleep issues. I'm thinking that might be worth mentioning to my POTS doc. That's one med we actually haven't tried yet Does he take it just once a day at bedtime to help sleep, or is it something he has to take twice a day to keep a continuous level in his system?

Thanks everyone! p8d - I'm sorry you're in the same boat. I hope you find relief from your sleep issues as well. CBT sleep therapy is something I might look into too, when I feel like I can get out of the house on a regular basis. artluvr09 - it's funny, before I got POTS, I used to eat bananas whenever I couldn't sleep, and it did seem to work. Thanks for reminding me about that, I'll have to add it to my regimen. Katybug - thanks for mentioning alpha delta sleep syndrome. I vaguely remembered reading a study on a sleep syndrome found in POTS (might have even found it on the forum in a search at one point), but just couldn't remember the name. Once you gave me the name I was able to look it up again, thank you! I emailed it to my primary care doc, who was really happy to have the info.

So I've been a member for a little while, but haven't actually posted anything, so I guess this is also my (late) intro post! I was diagnosed with POTS last year in the middle of grad school, and wound up bedridden pretty fast with a super high HR and scary high BP on standing (although BP would get super low when lying down). I was found to be somewhat hypovolemic, but they also found my epinephrine (adrenaline) to be high pretty much all the time, even while resting supine, while my norepinephrine (noradrenaline) was always normal (even on standing). I was told that was highly unusual, as most HyperPOTS patients have elevated norepinephrine, not epinephrine, so I wasn't diagnosed with hyperPOTS exactly.. but was told I have the symptoms of HyperPOTS. Anyway, one of the biggest issues I had when I was first diagnosed was that I was only sleeping an hour a night, which didn't resolve until I was put on Klonopin - at that point, I was able to sleep 8 hours a night (and did so for 9 months with no problems). All of a sudden now, for the past eight weeks, I've been sleeping only about 3 hours a night. No matter when I go to sleep, I will wake up 3 hours later and won't be able to go back to sleep (but I'll feel groggy and exhausted!). I can't figure out what might have caused it, as I haven't changed my lifestyle or routine at all. Oddly, I've also been having to keep my house at 65 degrees at night, and when I wake up, I'm usually way too hot and have to lower the temp down to 60, which is highly unusual for me (although I've taken my temp and don't have a fever). We tried quadrupling my Klonopin, tried having me take more Klonopin when I woke up in the night, tried Gabapentin (it's supposed to induce slow wave sleep), and also tried various doses and forms of Melatonin and B6. None of it has worked, and I can't take Benadryl or antihistamines. I have blackout shades & curtains, don't watch TV before bed, tried meditation & hypnosis for sleep, etc. Nothing seems to be working. Both my POTS doc and my regular doc seem to have run out of suggestions as well, and we're not sure about a sleep study at this time, as I don't sleep at all in strange environments (and barely sleep in my own bed right now anyway). Does anyone else have similar problems? What have you found that helps?

When my POTS first started, I lost 30 pounds in a month on my normal diet. I know that wasn't just loss of muscle mass due to inactivity, because when I first got POTS I had been working out a lot (as usual), and was in great shape. The weight loss really scared my family. Over about a year, I managed to put about 15 of those pounds back on, but it took the whole year and I was on a massively high calorie diet (including weight gain shakes). I'm still struggling with keeping the weight on. This past week, I just lost another 5 pounds. And the thing is, I don't have GI problems, and we've ruled out gastroparesis (which is the usual cause of weight loss in POTS patients, I'm told). Originally, my doctors thought I had cancer, hyperthyroidism, autoimmune disease, or intestinal parasites (very good things to rule out if you're having that much weight loss) but I don't. I have had amazingly extensive workups, and we haven't found any reason for the weight loss. My current POTS specialist just informed me at my last visit that the continued weight loss issue "really isn't a typical POTS symptom if you don't have gastroparesis" and said I need to continue a thorough workup with my primary care provider to find the cause, although I can't imagine what more we could possibly test for at this point!

I have the exact attacks that you describe, so I feel for you! My attacks are triggered by most vitamins, supplements, and meds (seriously - I react to EVERYTHING, even antihistamines, multi-vitamins, artificial sweeteners, etc - even beta blockers started causing these episodes for me after I'd been on them about 2-4 weeks). I also get them from hydration issues, overstimulation / overexertion, viruses or illnesses, too much heat, or sometimes just a random overabundance of adrenaline that doctors can't really explain. I do get them in clusters, but very often the clusters mean I've taken some med, eaten something, or done something (or my hydration/blood volume has dropped too much) that's causing them. When the episodes are severe or are due to hydration issues, I actually do have to go to the hospital, otherwise my heart rate will just keep going up and/or the episodes will just keep coming back. I am fortunate to live near a hospital that treats a lot of POTS patients, and when I go in and tell them I'm having a "POTS episode", they give me a couple liters of IV fluids and put me on oxygen for about an hour or two, which stops the attack completely. If I'm treating the attacks at home, the first thing I do is drink boluses of fluids, instead of sipping (a trick taught to me by my POTS doc). I drink 16 ounces all at once about every hour, alternating between 16 oz water with salt + electrolytes added, and 16 oz plain water. I try to get 86 oz in 24 hours at least. Once the attack is over, I stop drinking boluses and go back to sipping. I also cut out all sugar, artificial sweetener, and simple carbs because those make me much worse - I eat pretty much protein and veggies during an attack. I also increase my dose of benzo's (valium or klonopin) during these episodes, because my adrenaline levels are elevated pretty much all of the time anyway, and are super high during episodes. Sometimes I'll need anti-anxiety meds in my system continuously for three full days during and after an attack to kind of correct everything and get me feeling better. But obviously, you should probably check w/your doc before doing that if you don't usually take them that way. I also need to rest lying down with my feet up in a quiet, dark environment. Heat makes it worse, so I actually have lower the temp in the house quite a lot - to the point where I actually feel a bit too cold. I avoid bright lights, activity, stimulation of any kind (too much talking, laughing, etc). I can tolerate watching TV (something that isn't action or horror, lol), or I'll read or do some other quiet activity to distract myself. I'll usually make sure to keep everything dark, quiet, and low key for a few days after the attack resolves as well. Often I'll stay in bed completely for a few days or until the cluster of attacks is gone. I also do a lot of supine-only restorative yoga (yoga that is designed to balance the parasympathetic/sympathetic nervous system), and guided meditation/hypnosis every day to try and get things back in balance. Massage can also be super helpful (especially if it's concentrated on the feet) as that activates the parasympathetic system also, although if you have mast cell or lyme disease, massage can make it worse in some cases, so keep that in mind. Well, there's my flare-up coping strategy. Hopefully there's something in there that will help you! Hope you feel better soon.

I had to struggle to find completely natural electrolyte supplements, as I can't do any kind of coloring, flavoring, or sweetener - aspartame is a no-no, and both splenda and stevia cause GI problems for me. Plain sugar or even dextrose (as in Pedialyte) is out, as they both spike my blood sugar and cause my symptoms (and hydration) to actually get worse. I found two electrolyte supplements and one natural sports drink that I love: Elete, which is just naturally occurring trace mineral electrolytes that comes in drops and tablets that you add to your water (it is flavorless, although I do believe they have one with natural lemon flavor as well). I get it either at Whole Foods or through the Elete website. Celtic Sea Salt Electrolyte Drink Mix Powder, which is celtic sea salt for sodium (really excellent source of sodium with some trace minerals) with additional electrolytes added (and I think just a touch of lemon flavor from the citric acid). I get that one through Amazon. Recharge (all natural sports drink with various juices, electrolytes, and sea salt, which is pretty easy to find at health food stores / whole foods I think). I love the taste of it, but I find it a bit pricey if you're going to drink a ton of it. As per Mayo, based on my body weight (118) I'm supposed to consume 2.5 liters of fluid daily, with 43 ounces being plain water and 43 ounces being enhanced with sodium and electrolytes (with my sodium intake at 5-10 grams salt, which equals approx. 2-4g sodium). I only use the above mentioned electrolyte formulas in about 8 oz of fluid a day (I'm super sensitive to mineral supplementation - too much can actually cause symptoms), and for the rest of the enhanced 43 ounces, I consume about 8-16 oz of broth daily (organic vegetable or chicken broth w/o MSG or additives - good source of electrolytes and sodium), and add plain celtic sea salt to some of my water (it still has some minerals/electrolytes, just less than the electrolyte formula does). Once in awhile I throw in some Recharge.