Synthem

Funny that I see this topic today, because just last night I woke up extraordinarily dizzy and with the worst snow vision I've ever had. I have the snowstorm static vision constantly. It's hard to remember a time when I didn't have it, except for recently when I was taking Sertraline (Zoloft.) While on Sertraline my snowstorm vision, brain fog, and difficulty concentrating all went away— unfortunately I started having Reversible Cerebral Vasoconstriction Syndrome (I have a recent post about it) and had to stop. Anyways, about the snowstorm vision— sometimes it is worse than others. Often it's worse when I'm having pre-syncopy and sometimes when I am going to completely black out, the snowstorm effect worsens until I cannot see at all, and then I black out. Not always, though. I'm sure that the snowstorm effect got worse when my POTS did, but I might've had it before then, too. Honestly, I'm not sure. I get migraines without aura (at least I've never noticed one) and it doesn't seem related. I also have this weird thing where, when I sit up/change position too quickly and/or when I'm waking up, I get a white "light" that travels up the corner of my eye then disappears at the top. I also get a lot of floaters and zig-zags like SarahA33 mentioned.

Sideofsalt: As of right now, my doctors have postponed trying me on any new medications (by my request, but they also thought it was a good idea) until I can be tested/evaluated for the P450-2D6 (CYP-2D6) enzyme abnormality since that effects the ability to metabolize a great deal of medications. Thankfully scary was the worst of it, and I didn't show any signs of lasting damage in my neuro evals. At least now the clinic knows it can be a problem! Maybe if the doctors are more aware of this possibility it'll save another potsy trouble down the line, and they'll know to send anyone with TCH side effects to the ER.

Singout, I've found that compression garments (that's what 'flight pants' are, right?) are invaluable to me when conventional blood pressure therapies don't help my symptoms. Although it doesn't make a notable difference in my numbers, it can be the difference between being able to do physical activities like going to the grocery store without a wheelchair, walking around the house, etc . . . and being stuck in bed. Although, a word of warning from my personal experience to anyone reading this who thinks about trying compression stockings/leggings/etc: people seem to have a sweet spot when it comes to the compression level. Too little and it does not work, but too much compression and it makes them worse; and the right amount of compression may vary day to day based on various factors like your blood pressure and the weather/altitude. I know a couple of people who are like this, so it doesn't seem to be a just-me kind of thing. Take that with a grain of salt, though. Katybug, I think your neuro has a point about the quick fluctuations in BP/HR. I often think that if someone hooked me up to a machine that could take constant readings of my blood pressure down to the second, I would have many of those little 1-2 second drops. That's definitely what feels like is happening, some of the times. I know my heart rate does that with tachy. I wear a polar sometimes and it'll shoot up for all of a second or two, then normalize. But it's enough to kick my butt. Ramakentesh, that makes a lot of sense and would explain a lot. I'm not sure why my doctors are so convinced that there's a 24/7 detectible connection to numbers and symptoms. (shrugs) I'm not sure about the science, but doesn't exact blood pressure vary throughout the body, anyways? Things I think about. Issie, turmeric is my best friend. I think I'm one who feels better with mild blood thinners, but maybe it just gives me peace of mind.

Hey forum. I believe the last time I posted I may have mentioned a new prescription for Sertraline (Zoloft) to treat dysautonomia related brain fog, concentration difficulties, and fatigue. Well, I had one heck of an exciting weekend. Long story short, Sertraline triggered something called Reversible Cerebral Vasoconstriction Syndrome, where the arteries in my brain were constricting/spasming, causing thunderclap headaches and neuro symptoms related to brain ischemia/stroke. I'd been told to expect lots of side effects the first few weeks, but I knew something was wrong, so I went back over the drug info and googled a few terms I wasn't familiar with. That's when I read that the new neuro symptoms and the TCHs were all related to Reversible Cerebral Vasoconstriction Syndrome (also known by a variety of other names.) It's not well understood at the time, but some research going on outside of the U.S. has shown a connection between RCVS and SSRIs. It seems it's not as rare as was thought and is being increasingly diagnosed in connection with SSRIs. I ended up consulting the on-call emergency neuro, going to the ER, and eventually seeing my POTS neuro. All agreed the Sertraline was the cause and that I had RCVS, though they decided not to do any imaging tests since my symptoms were not actively problematic— and supposedly there's not much they can do to treat the RCVS, only complications related to massive bleeding and aneurysms, which I wasn't having. All this happened over the weekend before I was scheduled to double my dosage. The ER docs said catching it when I did was important and they really didn't know what would've happened if I had increased the dose. For the next month I've got to avoid triggers of the RCVS and its related complications (stroke, SAH, etc.) So pretty much, no bending over, no pool, no straining, no physical exertion, no getting angry, no fun of any kind. It was also theorized that I was having toxic syndrome due to the sertraline, caused by a suspected genetic abnormality of P450-2D6 (CYP-2D6) but that didn't explain the TCHs and neuro symptoms— just something they thought might have been going on simultaneously. POTS neuro said he'd never seen sertraline cause RCVS. The more commonly recognized culprits are Paxil and SNRIs, he said. Because many doctors aren't aware of this potential reaction, and how under diagnosed it is, I thought it would be good to share my experience with you guys. In some countries there is now mandatory procedure for testing for RCVS and related complications in people who show up to the ER with thunderclap headaches who are taking drugs known to cause it, but in the U.S. it is not recognized or screened for and often flies under the radar until the patients have serious complications, which might've been prevented if the responsible drug was immediately discontinued.

Looneymom, that is a good point and haven't thought about that. My mom suggested yesterday to have my iron levels checked and I should be doing that soon, because I've had that problem once before in life and it's definitely possible that could have a part in it. I'll definitely keep that in mind when I get the labs done. Issie, it's interesting that you bring this up because I have been thinking about that a lot lately. I think the blood flow is a problem because having a low heart rate tends to make me feel worse. I only take enough beta blockers to keep it from hitting 130-160 on a daily basis, but if for any reason it's lower than mid-90s, I feel wretched. Usually though that corresponds with asthma flares and by the time I use my inhaler, my heart rate is back up and I feel better for it. HyperPOTS is something I've suspected for about a year now, but haven't been able to get any of my treating docs to consider/diagnose/treat for that. Same story with MCAS, I have lots of symptoms that sound typical of that, some of them since I was a kid. I may end up seeing a few new people this year to talk about those two things. Blood flow I think is definitely a problem for me, we know I have poor circulation but they're not sure why . . . also I have 'thick blood' not good for my flow. Whatever that means. It's one of the mysteries my docs are still confused by. I read the info about protomyxzoa and found the part about its affects on blood and circulation interesting, for that reason.

I get the non-epinephrine injection as well. It's the only way— the shot with epi makes me shaky, tachy, and nauseas. I have had problems with the non-epi shots wearing off too quickly and cannot have multiple procedures done at once or they reach the max dosage and have to finish up without numbing. However, I think this is because I'm resistant to many numbing and pain relieving drugs, and not that the drug itself wears off quicker.

Howdy, and welcome to the forum! I'm glad you joined and shared your story with us. I do not have the same diagnosis as you, but I can relate to many parts of what you said and I know a lot of other people will be able to, as well. Especially about the frustrations of bouncing from one doctor to the next. It can be exhausting. Sometimes it feels good to stop, take a break, and come back to it when you are ready. Also, the constant peeing. My gosh. Hydrating is worth it, but it would be nice not to pee every half hour, yeah? Best of luck if you decide to pursue the new doctor, and I hope we see you around the forum.

Howdy DINET friends. I wanted to post an update and share some odd experiences I had in 2014 I'm in a rather strange place right now where my blood pressure and heart rate are in an ideal range, but my symptoms have gotten worse. My tolerance for standing, walking, and other activities has decreased, and I'm fainting more often than I ever have— even before I got a diagnosis and treatment. I'm wondering if anyone has had this happen at some point in their dysautonomia journey, where their numbers are "perfect" — quote the doctors at my dysautonomia clinic — but nothing else is going well? The weird thing: One of the instances when I passed out, my heart rate was being monitored the entire time, and my blood pressure was taken frequently. Both were normal for what I was doing, except for a single HR spike that was still considerably norm for me (120)— but I completely passed out. Fortunately, it came on slow enough that I was able to recognize the warning signs and sit down. As soon as my butt hit the chair and I relaxed, I was unconscious. I was standing for ten minutes, glancing up occasionally and moving my arms (but not lifting anything near 1 pound) when this happened. 10 minutes is my max for walking/standing these days. Here's another odd experience I had in 2014. In October I went to the ER for spontaneous (and very bad) diarrhea. Gross, yeah. They never figured out what caused the diarrhea, but discovered a UTI and that my potassium was low but not critical. My tachy was ridiculous due to sudden dehydration and low potassium, doing a roller coaster type thing between 130-160 for most of the next 24 hours. They did manage to get it down about 10bpm after 3 bags of fluid. I got worse. Asthma attack happened. VCD happened. Inhaler was not enough. Couldn't take more nebulizer because of tachycardia. Couldn't keep down food or liquids. Passing out repeatedly. Managed to communicate all of this to the Head Physician rather than the doctor who had been managing my case and insisted on sending me home anyways, and eventually they admitted me to the hospital for the next 26 hours. The interesting part: I ended up being put on extremely low oxygen for the night after I continued to have shortness of breath and couldn't be given asthma meds. It was a miracle. My tachycardia went away completely within a few hours, so did the shortness of breath. I had a few arrythmias due to antibiotics (typical for me) but otherwise, I had zero symptoms while on oxygen. I could sit, stand, walk, talk, without any problem whatsoever. It felt to me as if I didn't have dysautonomia anymore. I was taken of the oxygen about an hour before I went home, and I continued to feel great (despite the infection and antibiotics) for about a week afterwards. My mom was with me throughout this entire affair and told me that I looked (skin color and energy wise) better than she had seen me in a decade or so. Also, no blue lips (which is a common thing for me.) TL;DR Oxygen therapy at hospital (at 2%) temporarily 'cured' my dysautonomia, I fainted despite having near 'perfect' BP and HR numbers, periods continue to be evil and make dysautonomia 10x worse, medications that lengthen the QT interval kick my butt, and dysautonomia clinic doesn't know what to think about this (except for the period thing— anyone well informed seems to know about that connection these days, which is nice.) P.S. Liquid potassium tastes worse coming back up, if that's even possible.

AmberK, my experience with midodrine was similar! I felt small improvements for the first hour or two after I took it, and then nothing. It seemed to help raise my blood pressure slightly, but my symptoms were still intense. However, despite the medication not seeming to do anything for me at all, my blood pressure began to run higher on a normal basis with and without the medication. I personally doubt it had anything to do with midodrine, though.

Whether you just sneezed seven times in a row, or woke up with that distinct scratch in your throat, you just know— I'm coming down with a cold. As soon as you realize that, I'm sure that you have some kind of routine or magical "get better fast" aid that you begin right away. Especially since the common cold can cause nasty symptoms flare ups and all kinds of unpleasant symptoms for us potsies. So here is my question for you all: What do you do to make a head cold more bearable? What do you do to help ensure it doesn't cause a total dys meltdown? Are there certain activities that make you feel better? Do you have a special sick day routine, like sitting down and watching Friends reruns until you fall asleep? Maybe there's a special family recipe for spicy food that helps clear up all your sinuses! I thought it might be fun ( and handy ) to trade secrets on how we cope with colds on top of our chronic illnesses, since it is an inevitable evil we all must face sooner or later. I encourage you to include your tactics for dealing with symptom flares in this kind of situation. I feel like there's a significant difference between how I personally approach symptoms and flare ups normally, and what I do when we're dealing with colds and viruses on top of them; and not only when it comes to how much you hydrate, although that is by far the most important thing, IMO. My own answer to this would have to be tons of vitamin c. I am a big fan of the emergen-c packets, as gross as they are. If I can start my vitamin c binge ( I use that word lightly, as I always make sure I am not getting too much; you know what they say about too much of a good thing ) before the cold reaches full swing, I honestly feel as if it shortens the length of the cold, though not as much as I wish it would.

Nadolol and propranolol were absolute nightmares for me. I have never had asthma in my life, but based on the side effects I was having, you would have thought so. My doctor said so themself. When I told them that I did not have a history of ashtma, they were at a complete loss and took me off the beta blockers immediately. During this period, when it was aggravated by the beta blockers, it was especially worse at night and in the cold (while cooling down even to the point of mild shivers is generally something that helps with all my symptoms, the breathing issues especially.) It got to the point that I could not sleep lying down at night because I felt as if I could not breathe ( or at least, I was not getting / "absorbing" enough oxygen ) while also having the sensation of having a whole circus of elephants on my chest. Had to sleep sitting up right for a couple of days before the symptoms went away. Took about a week and a half to fully recover once off the meds, and then I was right back to my normal self and could breathe easy again! I was on propranolol for a second time to "try it again" more recently when I changed doctors. I had the exact same reaction, so there is no doubt in my mind that those symptoms were caused by the beta blockers. Hope this information offers some more detailed insight into the some of the possible side effects of those specific beta blockers. Granted, this was just my personal experience, but I have heard from a few friends of mine that they had similar problems while on beta blockers. One of my doctors ( not the same as mentioned before in this post ) told me that it was not an uncommon side effect of those medications, however the extremity of my reaction was unusual. The unfortunate part of this story is that the beta blockers made many of my POTS symptoms completely disappear. I am still hoping that we can find a different beta blocker that has those same benefits without such bad side effects, but that might be wishful thinking.

This is so interesting! I remembering when my POTS symptoms were just getting started, there was an ever-present pain under my rib — only ever on one side — when I was doing something active that involved standing up and walking. I used to walk home from school every day in the heat and I would have the worst twinging pain and get seriously dizzy and start panting and sweating. Now, full on POTS and NCS with tons of adrenal surges and tachy being one of my main problems, the surges being pretty responsive so far to flourinef. Had my second one since getting on the meds today (and that was after physical therapy, walking around Ikea — dunno if you've been in one, but they're huge — and eating a meal. also came on with a strange pain in my abdomen.) I wonder how one would go about bringing this up without sounding like a total nut... I'm guessing the answer is "there isn't a way." Even some of the most understanding doctors tend to get skeptical and judgy when you start "self diagnosing" things; which is kinda crazy when you think about how many of u wouldn't even know we have POTS if we hadn't done that in the first place. Thank you so much for sharing this information! Very interesting. Never would've thought of that! P.S. I'm about 96% sure there was a House episode like this. The character had some organ of theirs dropping down into their abdomen, and they could feel it and hold it up and all their symptoms went away. I specifically remember seeing that on TV once, and it stuck with me for some random reason all these years. Kinda makes for an interesting coincidence after reading this post.

YolanInBlue, Wow! I'm glad to hear it worked out so well for you. I feel like the general consensus here is that Flourinef can be a real pain for the first few weeks, so hopefully things will settle down and start working well for me, too! I think the sudden drop in potassium might be the culprit here, actually, because I just ate a ton this morning and I don't seem to be feeling so bad. Thanks for the input! Alex74alex, Oh dang. It seems the whole BP spike and headache thing is pretty common, but I've never heard of it affecting someone's cycle. And what you said about the beta blockers seems to be my experience so far, too. I had the craziest nightmares and it completely destroyed my sleep schedule. Nice to know that's not unheard of, although it royally ***** for anyone else who has that same reaction. Also, thanks! I'm so glad to be here. Looneymom, Yeah. Part of me wonders that if it's just rough for the first month or so because of the sudden change. I know some medications I've taken, even the ones that worked for me at the time, almost seemed to shock my system at first (for lack of a better description.) Doubt it's that simple though. I hope everything works out for your son!

I'm sure some of these have been asked about before, but I scoured the search and first few pages without finding any topics directly about them (though if you know of a thread that covers this, feel free to link me, that'd do just fine!) Anyways— I had my second tilt table on Tuesday and finally got a treatment plan from my new doctor. He seems promising, so I've been optimistic so far. However today is my first day on the medication and I'm starting to have some doubts. I figure there's a good deal of you who've been on this at least once, so I'm curious what y'alls experience was (especially those of you had side effects.) I'm specifically interested in whether anyone experienced increased HR on Flourinef (fludrocortisone.) I'm only on day one, but my heart rate has been high. Unusually high, even for me; along with some other not completely unfamiliar but strange sudden symptoms. I'm waiting to see whether it persists or gets worse, but it got me thinking about what the side effects others have experienced might be. Because I know they give you a list of "possible side effects," but I know that I'm not the only person out there who reacts unpredictably to medications. I'm supposed to start taking propranolol in a week. I've never had much success with the -lol family; they've been known to give me asthma like symptoms and make me suddenly and severely depressed— the thing that made my previous doctor bail. He wasn't "comfortable treating me anymore, given the unusual reactions I had to the beta blockers." So that leads me to question number three: did anyone have unusual behavior / depression / suicidal thoughts with nadolol? So. 1. What strange and unusual side effects did you have on fludrocortisone? 2. Did you have increased HR on fludrocortisone? 3. Did you have unusual behavior / depression / suicidal thoughts with nadolol? My doctors and even my family thought that was crazy (the depression with nadolol) so, while I wouldn't wish that kind of scary reaction on anyone, it would soothe my mind SO MUCH to know that I'm not the only person out there that had that and it's an actual thing. I love my new doctor and I trust him fully, but I also trust my gut and how I feel so I always try to at least be aware of what's going on, stay informed, and be on the look out for side effects. Because you never know, you know?