ks42

I take Nordic Naturals Omega 3 fish oil, and I take 2 capsules a day which cumulatively equals about 1280mg fish oil. Fish oil typically shouldn't bother the stomach, aside from certain brands that will cause belching and a fishy taste in the mouth. This is very dependent on the brand and manufacturing process, though, and whether or not it's taken with food. I always take fish oil with food to avoid the fishy aftertaste, and haven't had any issues with Nordic Naturals at all - no burping, no stomach upset or anything like that.

Those sound a lot like the headaches I get - and NSAIDS like Motrin have been absolutely essential to controlling the pain, so I feel for her!! I'm assuming tylenol doesn't work for her (if that's the case, she probably needs the anti-inflammatory compounds to get pain relief). What I have been taught (and I checked this with Micromedex to be sure) is that Florinef increases the risk of stomach ulcers and intestinal bleeding from NSAIDS, which is the main reason why it's contraindicated; taking them together can increase/exacerbate side effects too. Some doctors feel hypertension is a small concern as well, but I think that depends on who you talk to. Talk to your doctor, because if your daughter absolutely has to take an NSAID, there may be some prescription NSAIDS that may have lower bleeding risks than Motrin, like Voltaren (diclofenac) or Lodine (etodolac), although I'm not sure if that would be a valid option for someone under 18. There are also methods that are used to reduce ulcer and bleeding risk in people who absolutely have to take NSAIDS but are high risk - for example, the addition of a proton pump inhibitor (like Pepcid), and an H2 blocker (like Zantac). I personally take high dose Omega 3 (fish oil) which is highly anti-inflammatory on a regular, daily basis for headache prevention when I can't take NSAIDS (takes about 3 weeks to start working optimally). It works well enough that when I do get a headache, I can manage it with just tylenol. Turmeric has also worked for headache prevention before. I also found cranio-sacral therapy or acupuncture really effective - while I was doing those on a regular basis, I pretty much had no headaches at all, and now I don't get them as often or as severely. Unfortunately, the downside is that it's too expensive for me to do on a regular basis. Of course, I'd check with your doc before starting any supplements or other therapies, just to make sure.

Katybug, thank you!! I'll definitely look into testing for mold and heavy metals. I'm sure my doc will be willing to call the CDC for more info, and I'll definitely look up Dr. Shoemaker and see what kind of info I can get. Poncha, that's really interesting. My spouse and I also developed cough variant asthma out of the blue right around the time that I developed POTS. Neither of us had asthma before that. I'm definitely going to do some research on Real Time Labs and see if testing through them might be an option. Thank you!! Also, I'm really sorry to hear about your experiences and difficulties, it sounds like you've had a rough time. I hope things get better for you!

Katybug, it's funny you should mention that. The apartment we were living in when I got sick had previously had a known mold problem. I actually had to sign a waiver that I was informed of previous mold problems when I moved in. I was never really told if the mold was gone, either, I guess I just assumed it had been remediated. Sigh. Live and learn, I guess. We did have the apartment tested when I got POTS and the levels of mold were pretty high. Not sure about chemical exposures. We all worked or went to school on a college campus undergoing massive construction on old buildings, so we could have been exposed to just about anything I guess. We moved out ASAP, but now our current house actually has some water damage (and I think a decent bit of mold in the walls), which we're hoping to have tested soon. I do think we need to figure out how to go about diagnosing mold and chemical exposures. We've asked our doctors, but they don't seem to know how to proceed. We were thinking it might be worthwhile to find someone who specifically deals with environmental stuff.

Biskyfam - lol statesof - yes, that's an excellent idea, and actually, we just started contacting some of the major autonomic clinics. The mayo near us can't take our case - I believe they are just too inundated with patients - but the Rochester Mayo said they might, so we're waiting for the final word. Only downside is it would be a year wait, and a trip clear across the country (might be worth it though). But, we're still contacting places like Stanford and are considering putting calls in at places like Vanderbilt and Cleveland Clinic as well, even though they're farther away. Hopefully someone will take an interest!

I developed POTS about a year and a half ago, very suddenly, out of the blue, while in grad school. A few months after I got diagnosed, my roommate at the time came down with POTS-like symptoms; even stranger, she displayed the same EKG abnormalities as I did (they couldn't find a cause for either of us, but both of us had previously normal EKGs). She moved out, but her symptoms continued, and she eventually got diagnosed with dysautonomia and POTS. My spouse now has POTS as well, with autonomic neuropathy - the doctors have been pretty sure of this for awhile, but we just got official confirmation via full autonomic testing at Mayo. None of us had POTS or dysautonomia in our families, and we were all previously really healthy (with the exception of my prior lyme disease). My spouse and I (not sure about the ex-roommate) have suffered from fevers, chills, and other infectious-type symptoms since I first got diagnosed, even though blood counts don't show elevated (or depressed) white counts, and blood cultures are negative. Our primary care doc is sure it's not a coincidence, and the cases must all have some common underlying cause, but she's stumped as far as where to go from here. We've done a ton of testing for parasites, viruses, lyme, mycoplasmas, and autoimmune disease, all of which has been pretty much negative. The other frustrating part is that none of us respond to the typical POTS therapies. Granted, fluids and salt help, but meds like florinef, beta blockers, alpha/beta blockers, ivabradine, mast cell meds, even compression hose have made us worse instead of better. I know this sounds bizarre. We've been tempted to write it off as coincidence, but it's just too weird. It would be interesting to find out if anyone else has ever dealt with anything like this before. Have you ever seen POTS occur in clusters? I did find a very old comment (in an unrelated thread) by someone who said he and his wife developed POTS at the same time, but that's all I found.

My POTS was pretty sudden onset, about a year and a half ago. It was out of the blue, and I'd been really healthy right before. I do have a history of having been sick with Lyme a couple times; in fact, I'd been completely bedridden with Lyme twice (2001 and 2008) for about a year each time, but otherwise was really healthy. And even though I'm very hypermobile, I've never had joint issues, dislocations, loose skin, etc, and I'm really sure I didn't have POTS before last year. I was in med school, sitting in class one day, and all of a sudden thought I was having a heart attack. Severe chest pressure, shortness of breath, chest pain, and really rapid heart rate. I also had one big, massive adrenaline surge going on too, and I was pretty much in pre-syncope for about an hour (before I decided to go to the ER). Nothing was wrong aside from extremely high heart rate and blood pressure. The attack lasted 5 hours, so they knew right away it wasn't a panic attack, but didn't know exactly what it was. Over the next two months, I had a bunch of isolated incidents like that, but I'd feel normal in between. However, those attacks turned into full-blown Hyper POTS at about the two month mark (after that first incident), which got me hospitalized for a week or so because it was so bad I couldn't even get out of bed to go to the bathroom on my own. They also found abnormal EKGs (a change from all my previously normal ones) even though we still, after a super extensive cardiovascular workup, can't find anything significantly wrong with my heart. I'd had a bunch of orthostatic vitals taken on me during physical exam classes in school in the months before I was diagnosed, and never had much of a change in heart rate from sitting or laying to standing at all. I even had orthostatic vitals taken when I was sick with Lyme, and never had an issue at that time either. So I think I can pretty confidently say my Hyper POTS really did start out of the blue.

I definitely agree - I would encourage anyone with beta blocker issues to look into mast cell. In my case, we've pretty much ruled out mast cell - at first, the docs thought that was the reason the Metoprolol raised my BP, but it didn't make sense that I didn't react the same way to other beta blockers if I had mast cell. I've also been tested multiple times, even during what we thought might be mast cell "flares", but was always negative. And we went ahead and tried various mast cell medication cocktails - they all made me worse (or at the very least, didn't help). I also really don't have many of the typical signs or symptoms of mast cell (besides the intolerance to Metoprolol).

ANA is a test for autoantibodies - so it tests for autoimmune disease. It can come up positive in many autoimmune diseases, including Sjogren's, but is commonly associated with Lupus. With a positive ANA, depending on what her symptoms and previous blood tests look like, they might need to do more specific testing (like anti-dsDNA, rheumatoid factor, Sjogren's antibody testing, etc) to determine the cause. Sometimes it can just be a false positive elevation. What a positive ANA means will really depend on the doctor's interpretation of your daughter's symptoms, any other test results that were done, etc. High A.M. cortisol can be seen in endocrine diseases (like Cushing's) or adrenal disease, or it can be mildly elevated due to something simple, like nervousness over bloodwork, pain when the needle was inserted, or even, as was the case with me when I first got sick, Hyper POTS. As two of my POTS specialists (and an endocrinologist who was familiar with the disorder) explained, if you have excessive levels of norepinephrine or epinephrine (adrenaline), the body may produce a little more cortisol than usual to try and counteract the adrenaline. So, what your doctor does about it or how it's interpreted depends on how high it is (all labs have different reference ranges), what her symptoms are, and any other tests that have been run. However, if they're concerned, they might do additional testing (for example, 24 hour urine, CRH stim, or dexamethasone suppression) to rule out Cushing's or other diseases.

I've actually gone up to 4 or 5 months (maybe more) a couple different times, sleeping only about 30 minutes to 2 hours a night. I tried a ton of completely ineffective natural options (melatonin, L-theanine, B6, magnesium, potassium, Valerian, Passionflower, Hops, Chamomile, etc). No success. Here are some non-benzodiazepine meds or interventions that I've found somewhat effective at different times: Gabapentin (great for inducing deep sleep in POTS patients, also used for fibro pain) - helped at first, but didn't help long term Trazodone (miracle sleep med for a lot of POTS patients) - helped a little, but not enough to continue Calcium/magnesium/potassium cocktail before bed - a good adjunct to my other sleep meds, still doing it, but doesn't work entirely on its own Vitamin B1 (small dose taken during the day, every other day or once a week) - helps, esp. w/adrenaline, but doesn't work entirely on its own Multi vitamin (1/4 of a dose only, every few days) - deficiencies in any of the B vitamins, which I did have, can mess with sleep No TV, computer, or even bright lights 2 hours before bed - I use yellow salt lamps in my bedroom and read, meditate, or listen to an audiobook before bed Foot massages before bed (activates the parasympathetic system, which regulates sleep) Dr. Lam's adrenal yoga every morning One of the other things I also recently learned that triggers my insomnia is poor fluid intake. Do you know if you have low blood volume, and are you on a high fluid / high salt & electrolyte program? If I skimp on fluids and salt for even a few days, my insomnia flares. Right now, I need about 86 oz (2.5 liters) of fluids with 5-10g salt (2,000-4,000mg sodium). Another trigger for me is excess activity, especially cardiovascular exercise. I have to be very, very careful about overstimulating my body if I want to sleep properly at night. Sometimes hanging out in a dark room relaxing for a day (or a few days) will help get my sleep back on track. The biggest lifesaver for my insomnia, though, has been Klonopin (clonazepam) on a daily, long term basis. However, I don't advocate going on a daily benzo without very careful consideration. In my case, I was put on it by a POTS specialist, who felt that for me, the benefits were greater than the dependence and withdrawal issues. We had to start with a baby dose and titrate up to where I felt my body was no longer becoming "immune" to it - which ended up being a dose that's equivalent to about 10mg diazepam. I've been taking it daily for about 1.5-2 years. Now that I'm doing a bit better, I'm tapering down off of it, and am doing it slowly enough (10% dose reduction every one to two weeks) that so far I'm not having any withdrawal issues. This past spring I had some breakthrough insomnia on the Klonopin, and we went through a LOT of meds and supplements that didn't work for that, but eventually, we found a couple things that helped: one, I didn't realize I was dehydrated - an IV fluid treatment helped improve my insomnia about 50-60%. Second, 5mg Ambien (the short acting, not the CR) taken with the Klonopin for only a couple of nights seemed to reset my sleep cycle.

Yes. I had the exact same reaction. Metoprolol elevated my blood pressure within the first few days of taking it. My first cardiologist told me to try and stick it out, but the end result was that my BP, after a couple weeks on it, was about 150/105 all the time, and it would spike to about 160/115 frequently throughout the day. The adrenaline surges got a lot worse too. I ended up having to be treated for high BP in the ER, where they took me off it and gave me meds to lower my BP. I'd tried other beta blockers, including Nadolol, which didn't raise my BP, so for me, I seemed to have some reaction specific to the Metoprolol itself. When I finally got to a POTS specialist, she wasn't surprised that I'd had that reaction to the metoprolol. It's an uncommon reaction, but is apparently not unheard of. There are several reasons a reaction like that can occur, including (but not limited to) unopposed alpha receptor stimulation, mast cell, and genetic predisposition to paradoxical reactions with specific types of beta blockers. It would probably be a good idea to bring up the elevated BP to your doc and see what he or she says.

I have extreme problems with sugar - it can actually send me into the hospital with an adrenergic storm, so I can't have ANY - even natural sweeteners like honey, molasses, etc. If you're reacting to sugar, you might want to make sure you've had a recent fasting blood glucose test, hemoglobin A1C, and possibly even a glucose tolerance test. You also might want to buy a glucose meter and try checking your blood sugar before and after eating things that trigger you, just to rule out blood sugar problems. Reactive hypoglycemia is an issue with many chronic conditions, which can cause the issues you describe, so testing is important to rule that out. I myself don't have any blood sugar issues (had all of the above tests to rule that out), but I wasn't surprised to find that sugar was a problem with my POTS. To put it simply, the way we metabolize things that are high in sugar and high glycemic induces a stimulatory response; it revs up your metabolism, raising your heart rate, and excites your nervous system (not good if you already have an overactive sympathetic nervous system, as I - and many POTS patients - do). Because of my reaction to sugar, I also react to high glycemic foods (foods that turn into sugar quickly in your body). So, I'm on a very specific low glycemic/low carb high protein diet. The diet was recommended to me by two POTS specialists, my GP, a naturopath, and a chinese medicine doc!! It consists primarily of a lot of lean proteins (chicken, turkey, sometimes fish, little to no red meat, sometimes protein supplements such as whey or pea protein), a TON of vegetables, low glycemic fruits, sometimes beans and grains like quinoa, etc. I check the glycemic index of every food I eat, and calculate the total glycemic load of my meals using an app. After awhile, you don't have to look it up anymore, you just know what foods to avoid. For example, I don't eat high glycemic foods like breads, pasta, rice, certain fruits like melons or pineapple, raisins, etc. I also typically avoid processed foods in general, as they can be neuroexcitatory as well. This diet changed my life. I'm still not out of the woods (or even very well controlled) with my POTS currently, but within about 1-2 months, I had improved my symptoms 30-40% just from diet alone, and had stopped going into the hospital on a weekly basis However, I know other POTS patients who have improved with a diet opposite of mine (high starch / low fat, vegan or vegetarian) so diet, like all things when it comes to POTS, is really very individual.

I've tried the pill multiple times, and have even tried Nuva Ring and the mini pill. Even before I got POTS, the pill made me unbelievably sick - I basically couldn't keep food down at all, and was so lightheaded I could barely get out of bed. I stuck it out for a long time to see if it would get better, but it only got worse. My OB/GYN said that high estrogen & progestin/progesterone levels just don't agree with me. You might be different since you tolerated it well in the past. I do know birth control is often used for POTS patients who experience a worsening of symptoms during their periods, but I've never heard of it being used for the opposite situation. Birth control pills are actually made up of estrogen and progestin, so it increases the levels of these hormones in your body. If the hormone theory is correct, and we feel better during periods because estrogen and progesterone are lower during that time, I would tend to think that birth control could actually worsen symptoms on a more permanent basis by increasing your estrogen even more, and by not allowing it to drop as low during your period as it normally would. However, the hormone idea is just a theory, and hormones are extremely complicated - they can have very different effects at different levels, so I'm guessing it's still possible it could work for your particular situation. I've found that most of my POTS specialists were pretty knowledgeable on the use of birth control for POTS symptom control, so it might be worth it to ask your autonomic neuro / POTS specialist.

I'm the same. My symptoms are much, much better during my period (even though they often get worse the week before). Two theories on this: One has to do with water retention. Your body retains water during your period - you produce more water retaining hormones during that time, which is often what makes many people bloat and gain water weight. Because I know I have low blood volume as a consequence of my POTS, and I have difficulty retaining water in general, my theory is that it's the water retention that happens during our periods that makes us feel better by helping increase blood volume to a more normal range... maybe?? Although we're also losing blood during that time, so I'm not sure if the water retention is enough to offset that. One of my POTS docs had a different theory - she said certain hormones (such as estrogen and sometimes progesterone) have been found to aggravate POTS. Estrogen and progesterone are actually lower on day 1 of your period than most other times of the month, then slowly increase again. Because I generally feel worse during times when estrogen is supposed to be particularly high, that would make sense. So it could be hormonal in nature as well. Maybe it's a little bit of both?

I've been tested for it numerous times since my POTS diagnosis. I don't have it, but Addison's can actually be an underlying cause of POTS, so it's one of the first things my doctors screened for when I developed POTS. I would definitely request a test, and make sure your doctor knows you have a family history of it, since I believe there is a familial form of Addison's (genetic).

My go-to, if there's actually an infection present, is to use natural antibacterial nasal sprays, like grapefruit seed extract spray (nutribiotic I think is the brand I use) or oregano oil spray. For me, anyway, they seem to be really helpful at clearing an infection up faster than antibiotics/decongestants alone. Other things that help congestion for me: - Mucinex (just the guaifenesin, not the one with added decongestants) - Sinus rinses (Neil Med, neti pot, and plain saline sprays throughout the day - usually I find 3-4 times a day is helpful) - Breathe Right strips (I LOVE these) - Eucalyptus essential oil or Vicks VapoRub - Steam treatments like dancer65 mentioned - Cayenne pepper nasal spray (this works amazingly well, but is too intense for me when I'm having a POTS flare).

I get this too! My POTS doc did say it could still be mast cell, even though my mast cell tests were negative, because unless you're in the middle of a flare when you're tested, you can get a false negative. My doc usually trials most people on mast cell meds (regardless of test results) to see if it works. I can't take mast cell meds, so we don't know for sure if that's what it is. But I had another doctor say that these isolated hives were a common side effect of "sympathetic discharge" - meaning, your sympathetic nervous system gets too active at that moment, you get a random hive. Don't know why they would always be in the same spot, but mine always are too. The third theory was that I had some hidden allergy (to food, environment, etc) so we're going through extensive allergy testing, but haven't found anything yet.

For me, it depends on the UTI. Did they do a urine culture & sensitivity test to find out which antibiotics the bacteria was sensitive to? A lot of docs don't, but it's really helpful in determining which antibiotics are going to work for that strain of bacteria. As far as antibiotics, I've had the best luck with Bactrim (it's widely prescribed for UTIs though, so some doctors prefer not to use it due to resistance) and even Nitrofurantoin works if the UTI is mild and hasn't affected the kidneys at all. Levaquin works well but they usually only give me that one if the UTI is pretty severe and there's risk of kidney infection. I went through a period of time where I had a ton of UTIs and antibiotics alone weren't clearing them 100%, so I used D-Mannose (it's a supplement - it's a simple sugar that remains localized to the GI tract and kidneys, so it doesn't go into general circulation and cause side effects). It causes the bacteria to lose their adherence on the bladder wall. I always found D-Mannose in addition to my antibiotics to be super effective (I'd also take it a few days after I stopped the antibiotics to prevent recurrence). Most docs were familiar with it and were on board with my using it. Occasionally, I also used Cystex in addition to the antibiotics and D-Mannose - Cystex has a urinary pain reliever but also has an additional antimicrobial compound that keeps bacteria from replicating. It's over the counter, although depending on your daughter's sensitivities to meds (and interactions with her current meds) I would ask the doctor or pharmacist about this one before trying it. Hope that helps!

No, I haven't had magnesium levels checked lately - they always check sodium and potassium, but the last magnesium check was probably months ago. If I remember, the last time it was checked it was either on the lowest possible end of normal, or it was just a teeny bit low. I'll try the epsom salt baths - I can't take super hot baths because of the vasodilation, but I do fine it if it's moderately warm. Thanks!!!

Yeah, I'd worry about the elevation in Flagstaff too, although the summers are beautiful. Winters not so much, temps can dip below zero pretty easily. I've spent a lot of time there, but it was pre-POTS. Sedona might be a bit easier with elevation, but it's still at 4500 feet. Yeah, ideal environments are tough to find!

Sarah - thanks for the article, the table of treatment options is really helpful. artluvr09 - I did try the banana. I didn't find it was a huge help, but on nights when I do eat them, I get at least an hour or two more sleep than if I don't. My potassium tends to be on the lowest end of normal, so it's possible I might need the potassium boost. My primary care doc wound up giving me a trial of trazodone until I can get back to my POTS doc, which I haven't taken yet as the side effects looked pretty scary, but will probably break down and try it soon. This is pretty much what I go through every time I try a new med - I stare at the bottle on my counter for a week, wondering what new or scary adverse reaction I'm going to have this time, before I get up the courage to try it. I realize I should probably stop thinking about it that way, because although I have had some scary reactions to a lot of meds, there have been a couple that have been extremely helpful, so the only way I'll know how it goes is if I try.

Since getting diagnosed with my POTS last year, I haven't traveled anywhere with significant altitude, but am planning on doing so this summer (hopefully soon) so I'll report back if I do and let you know how it goes. Albuquerque does get cold, but if I remember correctly (it's been awhile since I've been there) the cold period of winter is only from about December through February or so, and nights can freeze, but the highs are usually around 45? Might want to double check me on that though I don't do well with extreme temps of any kind either, and definitely can't do humidity. Also, LillyBee, you're right about San Francisco - I lived in San Fran when I was first diagnosed, and was super sick there. It's overcast a lot of the time, and has that windy, damp cold thing going on most of the year (even the summer) which really bothered me. Inland (northern CA in general) also didn't work for me for some reason. Felt much better moving back to central AZ, especially during the winter when it's fairly dry and we have 75 degree temps for six to eight months, but I wouldn't wish our summers on any POTS patient, they are brutally hot! If I had the means, I'd stay in northern AZ (Flagstaff, Sedona) during the summer where it's cooler, but can't afford that just yet.

I don't remember if I noticed more blood pooling than usual, but I was having a lot of blood pooling at the time in general, since it was summer in Arizona and super hot. Most of it should be out of your system within 17 hours of your last dose, but I think technically it can linger in your system for more than 72 hours. I felt a little better 24 hours after stopping my Florinef, but that's also probably because I was given drugs in the ER to counteract some of its effects. It took me I think more than 48 hours (might have been 3 or 4 days even) to feel completely back to normal. I'm not sure what all you've tried in terms of medication, but there are quite a few meds available to POTS patients other than Florinef and beta blockers. A lot of POTS docs prescribe beta blockers to patients who are young and don't have heart issues, but there might be something about your case in particular that makes your doctor reluctant. I've improved on Klonopin (for a hyperactive sympathetic nervous system), a lot of salt and fluid, and IV fluids when needed. I think someone else on the forum posted this article for me, so I'll repost it here for you - it has a great table of treatment options for POTS: http://circ.ahajournals.org/content/117/21/2814.full

This sounds very much like my experience with Florinef. As soon as I started even a quarter of a 0.1mg pill, I noticed more resting tachycardia (my normal resting HR was 70 at the time, and on Florinef it was sitting over 100 most of the time). As soon as I tapered up to half a pill, I started noticing an increase in urination. It was so severe my docs actually had me measure my urine output - it was around 4 liters a day, when I was only drinking 2 liters of fluids (your urine output is supposed to normally be less than 3 liters, and should be slightly less or equal to what you're taking in - more than that is considered pretty problematic). I was taking in plenty of salt and electrolytes, so that wasn't the problem. I also had a severe increase in resting tachycardia - I eventually had to be hospitalized for a heart rate of almost 200 while laying down that wouldn't resolve without massive amounts of IV fluids and benzos, and at that point was told to stop Florinef immediately. The heart rate and urination normalized as soon as the Florinef was completely out of my system. Most of the docs I talked to denied that there were any side effects like that with Florinef, but then I came across a couple articles that stated Florinef actually makes blood vessels more sensitive to the effects of catecholamines like adrenaline and norepinephrine, which I'm pretty sure caused the tachycardia in my case (possibly the excessive urination too, since my urination always increases when my catecholamine levels rise). I mentioned this to a POTS doc who did think my reaction was related to the Florinef (and wasn't all in my head!).

I can't comment on SSRIs (haven't tried them yet), but benzos have been miracle drugs for my POTS - didn't make my orthostatic issues worse at all - in fact, I really do think it made them better. Before the Klonopin, I was in "fight or flight" mode all the time, and even something as simple as having more than one person around me at a time, or having any activity go on around me would send me into a storm of high BP, adrenaline surges, severely erratic heart rate, and tremors. I also had issues swallowing, eating, and digesting my food (we ruled out allergies on that). I also couldn't sleep more than an hour a night (also adrenaline related) and was hospitalized a bunch of times for autonomic storms. We tried the usual beta blockers, calcium channel blockers, mast cell meds, etc but they all made the problem worse. We then found out that my epinephrine was severely and chronically elevated (whether lying or standing), which meant I wasn't a candidate for hyperPOTS meds as those meds target norepinephrine, not epinephrine. So we tried Valium - that helped a bit. We switched to Klonopin, and I started sleeping 8 hours a night, was able to eat, no tremors, could tolerate people, activity, etc without jumping out of my skin and having adrenaline surges. It didn't cure the POTS, but heart rate before Klonopin was 90bpm laying down and almost 200bpm standing up. After starting Klonopin, my resting heart rate dropped into the 70's and my standing heart rate dropped down to 130(ish). Because I have the type of POTS where my BP actually goes up when I stand, the Klonopin has actually kept my BP in a very nice, normal range too. I still have adrenaline surges, but not as badly. I've been on it for a year, and it's stopped working for sleep, but still keeping my other symptoms under control. I'm not looking forward to weaning off, but that might not be for awhile as it's so helpful right now still, and I definitely don't regret taking it in the first place. I've heard a lot of POTS patients say benzos caused their symptoms to worsen horribly, though, so I guess it's pretty individual.