NMPotsie

I have had these types of episodes, and sometimes they can go away pretty quickly (after a nap, for example) but at times they last for days. It may depend on why you have a fever; if you are fighting an infection it seems like everything is multiplied until the infection is resolved. If this temp issue is normal for you, then I would say there's no way to predict how long it will last. In my case, though, these types of episodes come and go. It sounds like your bp might be low. Have you checked it? Also, just fyi, when I feel this way and have a low-grade fever I go to the doctor because they do a cbc and usually my white count is crazy high, even with no clear symptoms of an issue. They just give me antibiotics, and it helps (until the antibiotics make me sick).

In my case, the saline calmed everything significantly for about 12 hours. The next morning I was right back to where I was prior to the treatment.

Alicia these look like strings and black dots. I will call my eye doctor today. Thanks.

Rich I was given propranolol and xanax to inhibit the high bp spikes, which were much more disabling than the low. Then I was put on 10g salt and 3L fluids to build the blood volume so that I don't become hypo. My sodium was like 37 and I am hypovolemic so building blood volume keeps bp up, while propranolol levels it out so I don't get surges. If I take the bb without the salt, I am a disaster. I take 10 mg 3 TID and prn with surges. I'm supposed to take the xanax in the a.m. and p.m., but I try to avoid it in the a.m. because it makes me soooo sleepy.

Thanks so much for responding. I don't notice them being bright; they are black, and are dots and lines that move with my eyes; when I roll them up the things move, though slightly behind the motion of my eye; same with down and side to side. They kind of end up in the middle of my vision, though the lines are all over the place at times. I will ask my neuro when I see him in September, but they seem to be getting worse and are a real annoyance. Again, they come and go, which is just weird. All about peace: Bugs, yes! We have centipedes in this area and when these things are bad I'm constantly running over to check if it's a centipede. My husband gets so irritated.

Anyone know why I get these black spots and squiggly lines in my vision? Some days they are so bad I can't read the computer screen. I know vision issues can be part of POTS. These come and go, especially when my bp is up or down significantly. Does anyone have a theory about the cause?

This probably won't be very helpful, as it seems obvious I guess, but I was told to keep my legs up on the dash as much as possible, drink lots of water, and keep the car really, really cool (like 65 degrees). Stopping every 1-2 hours is good, too. If you are driving you can stop, walk around, and lay the seat back with your legs up for a few minutes just to help with pooling. Also, you shouldn't spend more than 6-8 hours in the car total. And avoid singing to the radio, as singing can exacerbate POTS. I don't know if that's what you have, but for me that works. I have to drive 7 hours to the doctor, so this is what they told would make that much easier.

McBlonde: In my case, the idea is to keep the high bp under control with the propranolol by inhibiting the ne dumps, and add the salt and fluids to keep it up high enough that I don't experience OH without it (and thus, get the rebound effect). I kind of understand it, but I can't really explain it better than that. I still do get surges, though; I have medical accomodations at work to keep me from standing more than about 20 mins or I will experience a drop and subsequent rebound, though they aren't as severe now. I get only in the 150/100 area, instead of crazy 180/160 area. The worse surge I've had since starting the meds is 156/126, but I took the bb and xanax and was able to rest (before, I was manic when these surges happened, like a crazy person); it came back down within an hour or so. I had to stay in bed the rest of the day, and watch for it to get too low, compensating with salt and fluid when it did. The important thing is that I wasn't layed out for a week afterward (just had miserable headache that lasted 3 days, but I can live with that once in a while). Kor: I buy the flavored ONE coconut water because it tends to be cheaper (my store often has it for 69 cents) or Zyco when it's not, and put salt in those. I also drink a powerade when I wake up, with salt in it (which I put in the night before), and take a pedialyte to work with me to drink in the a.m. I drink Herb Ox Chicken buillon cubes bc they don't have msg and have 1100 mg sodium each. I put salt in those too, and drink one in the a.m., one at lunch, and one at night. I just buy whatever sea salt grinder is on sale, though I know some prefer Himalayan (I don't care). The chocolate is Ghirardelli, and I get a bag of individually wrapped ones at Walgreens and eat one every other day or so (i have to watch the caffeine). I also eat the 100 calorie snack bags of micro popcorn at night and salt that, and I do a lot of sunflower seeds. I don't eat the seeds for the most part because they are very high in fat, but I do suck the salt off. When I first got sick I thought tv dinners and ramen were the answer, but it turns out they have very little nutritional value and that's just bad for our malabsorption, so I have turned to regular foods that are high in salt, like celery and garbanzo beans (I eat a lot of hummus and salt that too). I eat melon with salt, a lot of organic canned soup for lunch (barely heated because if it's hot I get dizzy), and a lot of veggies with the highest sodium natural dressing I can find, or I make my own dressing and salt the heck out of it. I cannot stomach lettuce since I got sick (weird pots side effect!), so I just do raw veggies. I can also eat a lot of salt in peanut butter, so I eat a spoon in the evening sometimes (depending on my weight, cause that's just fattening LOL). Cottage cheese with salt and pepper is great, though dairy can be iffy for me. Ketchup is great with salted, sliced potato wedges baked in the oven, as well as soy sauce on meat, rice, hamburgers, whatever. That's about it. Hope it helps.

Thanks so much, derekliz. I will give that a try!

Relax I am on another forum and the ladies on there take pics of their hands when they are down and it sounds like your symptoms match theirs. When they raise the hand up the veins smooth out. They attribute this to pooling. Not sure that's helpful but it's all I've got.

Misstraci I could have written your symptom list! This is a great question as I often wonder if they've missed a test. I've had these: Tilt table (2--one 10 min and one 30 min) and standing test (where they have you use your leg muscles to stand), plasma catecholamines, urinary catecholamines, stress test, echo, doppler echo, multiple holter monitors, long term event monitors, hypovolemia, every vitamin deficiency you can have, immunoglobulins, EBV, RA, C reactive protein, celiac disease, Qsart, valsava, pulmonary function test, overnight pulse ox, sleep study (suspected apnea, but negative), multiple ct scans (with and without contrast), inner ear issues, EEG, MRIs with and without contrast, cortisol, thyroid (about 7 of them, all normal), pheochromocytoma, a host of blood panels, std panel (yep, one doctor was sure I had syphillus because of my "brain fog"), and more that I can't even recall right now. Every single doctor, except the neurologist at Mayo and the ones who check my vitamins, say I'm the healthiest person "on paper" they've ever seen. Two cardios said my heart was "structurally perfect" even though I have all kinds of weird palpitations and tachy, etc. The endo said my levels were all exactly where they should be, my lung function is well above average for my age and weight, I have "beautiful sinuses" (yuck, but that's what he said), my brain works well, and my nutritionist says my cholesterol/lipids are "insanely good." Still, I can't stand for 10 minutes, and I pass out if I try much longer, and I feel like I'm 80 years old; I'm also in the ER once a month for an infection, or spontaneous episodes of aniphylaxis. That's how useful those tests have been. I'd like to be tested for MCAD. I have an upcoming endoscopy to check for esophogeal eosoniphilia (spelling?) and will be getting an allergy panel performed. I think the allergy thing will help more than anything.

This was a bit tricky because I tend toward hypotensive. When I stand I get a sudden drop and subsequent rebound hypertension with the rush of ne. The longer I stood on ttt, the higher the bp got, until the blood pooled too much and then I have delayed hypotension. If/when I faint, it's usually after standing for longer than 15 or 20 minutes. I had a longer than normal ttt run because of this weird mish mash of symptoms, and they showed up in that order. I'm glad the doctor caught onto this because at the standard 10 mins I just looked hyper, but they kept me standing long enough to see the whole cycle.

Today my bp was 141/98 in the dr.s office and the doctor, who said he treats pots, offered me this wisdom: 1) I don't have pots because my bp is high, and it can only be low if you have pots. 2) I have white coat syndrome, which is why my normally low bp is suddenly high. 3) I need to learn to calm myself down because my amines are out of control. From the neuroses. I kid you not. I left his office with a script for xanax for my anxiety. This is the 14th "local" neurologist I have consulted to help avoid the 7 hour drive to Mayo Scottsdale. Of those 14 visits, I have collected 9 prescriptions for anti-anxiety medications, 2 for anti-depressants, and multiple referrals to psychiatrists. This is AFTER they read my records, which include tilt-table testing and Dr. Goodman's diagnosis and notes. I feel your pain. Next time I will request a tuning fork.

I've had multiple knee surgeries (several scopes, a broken kneecap, and cartilage repair in both knees) but the POTS came on much later. I'm facing this question right now; I have chronic tonsillitis and they want to remove them but I'm terrified it will make me worse or I'll never recover. I am doing everything short of voodoo to keep my tonsils in my mouth.

Sorry for posting again. Issie I forgot to address something you said. It wasn't that the clonidine didn't work for me. It worked very well and brought my bp down well. The problem was that it got so low that when the drug wore off I experienced rebound hypertension. If I had stayed on it I'm sure it would have stayed down, but I felt like a zombie, was exhausted, and generally hated it. I would rather find ways to manage my surges than feel the way I did on clonidine because I still work and I would not have been functional. It just wore me down too much. The last time I saw the doctor, he suggested adding xanax to my daily propranolol in the a.m. and p.m., and I had a similar reaction with a zombie-like state. I just can't live feeling that out of it at this point. The doctor just said it wasn't the right med for me.

ps It's a little thing but my doctor has encouraged me to eat a bit of dark chocolate every week because of the anti-inflammatory properties, and I found these chocolates with sea salt that are yummy. I don't really like chocolate (I've always had a salt tooth, not a sweet tooth) but these suckers are yummy.

Hi Kor! As I said, I'm not sure I get exactly 10g per day, but I drink 3 cups of msg free chicken broth/day and I salt it (it has replaced coffee as my a.m. beverage of choice), v8, pedialyte, and coconut water. I buy the flavored coconut water and put my ground sea salt directly in it (it masks the flavor). I also put salt on everything I eat but not so much that it hurts my belly, just enough that it's past my taste level but still edible. I also put a couple of turns of salt in my water. I've heard people say they've tried it and it's gross, but honestly if you get used to salt you don't even notice it. People in restaurants look at me funny though because I carry my own salt and put it in my drinks. I didn't respond well to the salt tabs; they made my stomach burn and I already have some kind of acid reflux issue so it just didn't work. This is a lot of salt but doesn't feel like it because it's with other things, I guess. Again, this is what has worked for me. It seems like we all have different orders, even with the same doctor for some of us. Like others, when my bp is high I take it easy. Today at the doctor my bp was 141/98, which is much higher than my normal number, so I just did salt in my food but didn't add it to my liquids. I also took half a xanax, just to avoid a possible surge. Tonight it's back to 101/60.

Thanks Issie. I was checked for pheo, so that's not the issue; it seemed like they just thought it was the exaggerated response to the hypotension caused by clonidine. I have low bp without meds; supine around 100/60, and on meds it runs 90/60 area. When I have spikes, it gets up to 180/160; once it was higher at the ER, but I couldn't tell you specifically what it was because I was a mess and don't remember. My general definition of higher, for me, is when it gets up into the 140/90-150/100 range, but again it goes much higher than that with a spike. I was told to go to the ER if it gets over 100 on the bottom number and stays there for very long (sustained). The other day it was 150/54, and dropped to 130/60 within a few minutes, so Dr. G said not to worry unless it is very high for awhile. All he really said was that I have an overactive sympathetic nervous system and when my bp gets low I pump out tons of ne and then it goes the other way to crazy high. I have very low sodium levels, so that's why he told me to eat 10g per day. It is very funny how we all react differently to everything. My impression is that it depends on the "root cause" of why we experience pots symptoms (ie in my case hypovolemia and hypotension).

I do all the stuff I'm supposed to (salt, exercise, fluids, vitamins) and if I miss a dose of my bb by more than an hour my hr is in the 130s, I'm dizzy, and I feel like dirt all over again. I'll take them until I die if I have to, which my doc says is a likely scenario for me.

I'm on propranolol and it makes me wheeze at night. I don't notice breathing problems any other time except on stairs, which I know is typical of POTS. I had that before I started the meds.

Just FYI,,he based his recommendation primarily on my urinary sodium, which was in the 30s I think and should be over 100. I recently had it rechecked on the salt and it was 110, which is right where it should be.

I ended up on propranolol 10 mg TID and that has worked pretty well for me. My bp is still all over the map (I had to buy a machine that takes 3 consecutive readings 2 minutes apart to get an average and I report that as my bp) but it is in a much more narrow range than it was before I started it. But, and Dr. Goodman was adamant about this, it only works as long as I maintain the 10g of salt and 3L of fluid he put me on. I also have to avoid drinking too much plain water or it flushes out the sodium and my bp goes nuts. I don't think I actually get 10g most days, but I sure salt the heck out of everything and drink several cups of chicken broth a day. If my salt gets low, the propranolol will lower my bp too much and I will have a spike. My spikes are ridiculous, and lay me out for days, so I make sure and get max salt as much as possible. When I do have a spike now it is much less severe and doesn't wipe me out for days. In the case of a spike, I take an extra half dose of propranolol, wait a few minutes, and if that doesn't take care of it I chew up a .5 mg xanax or two. That usually works somewhat. Again, I'm just moderating them, not stopping them altogether. I still get left side headaches when my bp is even a little high, but they are liveable. I take Tylenol, which helps now but would not have put a dent in them before.

I have terrible reactions to anesthetics (tachy, vomiting, out of body sensations, seizures (?) and fainting), so I take a Percocet and a stress ball and take my drilling and filling sans anesthesia. My dentist is always duly impressed. The pain is short-lived and much better than the alternative reaction. I also really stay on top of my dental issues so that I don't end up needing a more serious procedure like a root canal. I think I'd have to be admitted for that.

My understanding is that in my case the dysautonomia is causing baroreflex issues similar to baroreflex failure (but not constant; kind of on and off). So in my case, yeah, the POTS causes both high and low bp because the regulator isn't working correctly or is getting bad signals. Here is a link to br failure: https://rarediseases...ore/baroreflex/ This was happening with my POTS well before I started salt-loading, though the salt helps maintain a higher bp on average so that I don't get rebound hypertension. Oddly, if I eat less salt my bp spikes much more often and much more severely. My body is trying to compensate for the low blood pressure, but because the mechanism that controls that is out of whack, I end up on the other end of the spectrum, at hypertension. Clonidine specifically caused this reaction, and my doctor quickly had me stop it. It's not the same for everyone, but in my case at least POTS definitely impacts my bp, and it happens very suddenly and very noticeably. When I get a spike, I have the same painful left-side headache. Dr. Goodman did an MRI but it was clean, so he just attributed it to the POTS and high bp. I call them high blood pressure headaches, and they are monsters. I'm so sorry you're having them.

Thanks Issie. i will bring all of this up to Dr. Goodman because though the flushing has lessened I am still definitely itchy, with random and spontaneous rashes. I do wheeze at night sometimes, but I think that's the beta blocker because it started almost immediately when I began taking it.