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One thing I've heard on this forum that I think is good advice is to explain to your doctor how you feel on your bad days so they know what your going through, rather than just explaining how you feel the day of.

Do you get migraines? And are your headaches triggered by POTS type stuff, or do they just come and go on their own? I have migraines and remember that when I first got them I would wake up in the morning and there would always be this sort of "off" feeling that let me know a headache was coming on, then I became more aware of the preceding visual aura. My headaches aren't triggered by POTS stuff, but POTS has made me more sensative to getting them.

They probably don't want to continually prescribe clonazepam because it is a benzodiazepine; their pretty much just prescribe for short term or every now and then type situations. Each doctor has their own views on prescribing these meds. Like other people said they're considered easily addictive and tolerance developes quickly. If chest pain/ pressure is the symptom your trying to control have you asked your cardiologists about meds you could try? For my own chest pressure, I found other meds that work better than benzos, but their also not antidepressants so I didn't have to worry about too many side effects.

Yea I think for me my anxiety disorder is just made worse by the autonomic symptoms, it's hard to not feel on edge when you mentally are trying to relax but your hr is stubbornly sitting above 100. One of the hardest parts of this illness, and I think this goes for many neurological illnesses, is it is very difficult for people who don't have it to understand it because we look fine. If a healthy person was thrown in our bodies for a day they would probably be shocked with what we go through. On another not I do find medication to be helpful, it doesn't cure my symptoms but it helps me stay in the moment.

Hey Lindz hang in there, when I was first sick dysautonomia wasn't even on the table, I only got the diagnosis of POTS 3 1/2 years later when my autonomic symptoms got really bad. But when I first got sick it was like I woke up in a new body with 15 random symptoms that doctors couldn't make sense of, and it did feel like I had some disease that was slowly getting worse but over time I've developed a high tolerance for neurological symptoms, and did find some medications that helped. It really is shocking sometimes how bad I can feel yet all the tests come out fine. And yes I've had many exerperiences that made me feel like I was dying, luckily hasn't happened yet, but it's still always emotionally concerning and I don't think that part ever goes away completely. We sort of live constantly in the not knowing of what exactly is going on, or why one symptom gets worse or better. Just try and live in the day, that's all we really have anyways.

i notice the only time I can go slow is when going to the supermarket I can go a few steps stop, then go again, then stop etc. that's the only way I can get through shopping for groceries.

So this past year was the first one I lived alone since my POTS symptoms escalated, and I'm still exploring the ways in which it works when it comes to physical exertion, so I thought I'd share and would love to hear your own findings. When it comes to taking out the trash, bringing up groceries (can be heavy), and doing the laundry (going up and down two flights of stairs) I've found that if I try and do it carefully and slowly I can get immediately bad symptoms, but if I just grab everything and go my body does much better. This first came into my mind when I had a stress test and was expecting to last about 30 seconds, since I could only walk about a half block when I'd get a sudden onset of symptoms, but I was able to go for minutes even feeling my leg muscles working for the first time. However after the test I had to be carefully in walking back down to my ride. So today I threw caution to the wind and walked quickly for two and a half minutes to the end of my street and back, and then laid on my couch for 15 minutes as my hr slowly dipped below 100, and I'm now I'm recovering. And I don't feel amazing but I don't feel like I'll have to spend the next few days in bed! My only real indicator of if I went to far is I will get this pain across my head in the same spot each time, but wow that's the furthest a I've walked in over a year! I figure I'll see how I do tomorrow but might try and do this 3 times a week and see how it goes. Feel free to share your experiences.

That sounds great, any amount of progress in the right direction is encouraging and it sounds like you've found a program of exercise that is working for him.

Hi DizzyGirls, you can always keep the first autonomic specialist appointment and then see how helpful it is, since the UCSF appointment is much further on. And showing the autonomic specialist the MRI and ct results might give her the ability to weigh in on if the cyst seems to be a part of the problem or not. I would just let the ENT know your going to the autonomic specialist and see if they have any recommendations on what to do with the MRI ct finding. TTT's are not nearly as scary as they seem, most of the test is done lying down and then they prop you up in a standing position at the end, usually for around 15 minutes sometimes longer depending on the test, and how your symptoms react. The device that the doctor would send you home could be a holster monitor, where it records your hr changes throughout each day. For me my TTT's were abnormal but my holster was normal, though it depended on who read over the findings of it.

I haven't quite had these attacks that you have, but I have noticed that when I am in specific anxiety inducing situations, and I say specific because I can have different amounts of daily anxiety that doesn't cause this, my body will literally start to shiver like you would if it were really cold in the room, and it does seem more difficult to talk. i did think it had something to do with too much adrenaline but never understood why this would happen.

Hey bigskyfam, I've had 2 similiar types of episodes. At first when my POTS symptoms got worse I would get almost panic attack type episodes but they would just come out of nowhere and I'd have no clue what was happening I would just feel like my arms were weak and felt like I should have trouble talking but didn't, and get hit with that "feel like I'm dying/ having a heart attack" feeling, and sometimes feel like I was going to throw up, and then 15 minutes later I would feel fine just tired. I'd get those at times if I was pushing my mental limits to far, like I had done a lot of activities throughout the day. I would also when I was recovering from pushing myself physically sometimes wake up in the night and just have that generalized "bad" feeling, my heart would always feel weird almost like I had a big stone in my chest, or chest pressure or weakness, and it always left me with a really disconcerting feeling like if I fell asleep I wasn't going to wake up again, idk how to explain that but just the way my whole body felt it gave me that feeling.

Hey stillhoping, when I first started with compression stocking I could only wear them for 2-3 hours because it would almost start giving me a headache, just my weird body I think, but now I can wear them longer, I'll usually try and wear them 4-6 hours but it all depends how many errands etc I need to do, some days I just forget. As far as salt my cardio suggested chips as a unhealthy way to get more salt, or drinking pickle juice which I guess is healthier. I just buy a big container of salt and then add it to a glass of water and drink salt water during the day. At first it was actually kinda gross, especially since I would add way too much, but then I actually found myself starting to crave salt water at times.

Hi stillhoping, welcome to the forum! Some things that have helped me is water and salt loading a few times a day, wearing compression stockings for a few hours, and not pushing my limits. Going past my limits was one of the worst things for my POtS during the first year, so for me it was very important to find out what things I could and could not do.

I have xanax not clonazepam, but I find it helpful on days where I have too much chest pressure; then I will sometimes take it in combination with an extra verapamil. Overall though I wouldn't say it affects my POTS symptoms very much at all other than allowing me to do a slight bit more physically without hitting my limit, but it is very slight in my case. I believe there are a few other topics on benzodiazepines, and I think their helpfulness for each person seems to be a bit different.

Wow interesting answers. Kellygirl - I was trying to see if was something with too much of a nutrient, I was actually looking at the iron, potassium, or magnesium. I might try some other foods that have those just to see if there's a correlation. Katybug - Have you found anything helps when you get the mast cell reaction to foods? Benadryl maybe?

Hey so since my POTS symptoms got worse I couldn't not tolerate caffiene in any amount just a few sips of soda would make my brain start to feel badly. Last week I ate a bunch of quinoa, thinking it would be a good healthy thing for me, and for almost a week it had my my brain feel very sensitive and irritated, a bit like how you feel the day after a migraine but different. Anyway this week I'm noticing my head/ brain just seems very sensitive to different food, ones that are not migraine triggers for me, and ones that typically I can eat with no problem: spinach, green peppers, Brussels sprouts. No idea why, and not sure what's going on, but it seems like the quinoa triggered it; really just feel like my brains feeling irritated (physically not emotionally) and kinda inflamed/ sensitive or something. Anyway just wanted to see if anyone else has had weird experiences like this in the past, thanks.

It took me about a year to really understand a lot of my physical limits, that whole year I basically spent every other week in bed for a week my body recovering from pushing past its boundaries. Now days though I tend to see how my body feels and space things out, so if I have to go to the grocery store I do that on a different day than I do laundry (it's in the basement and I live on the top floor). I can usually start to tell if I'm doing a bit too much because I'll start feeling mentally exhausted and need a break, sometimes I'll feel visually tired or anxious. Also on a long day for me I'll usually wake up the following morning feeling completely spent, my bodies way of telling me to take it easy that day. Overall it is tough though, you kind of have to find your own limits, but spacing different events out throughout your day might be helpful, like one thing in the morning, one thing in the afternoon.

That's awesome kellygirl, I have noticed with myself that being around people and doing something fun that doesn't push me physically, can many times help me feel better physically even if it is one of those days where I wake up and think I'm not going to be going out or design anyone. And I practice a lot of the mindfulness work as well and I do find that it can help me to forget that it can at times help me forget that I am sick. I think this just has to do with not worrying about the future and focusing more on being in the present day/ moment only.

I don't get tunnel vision, or at least my visual symptom doesn't look exactly like what pictures of what tunnel vision is supposed to look like, but at times my vision with feel "hazy" almost like I can see normally but I feel like I'm in a fog or seeing through a cloud; it's as if it's harder for me to recognize what I'm actually looking it and usually I feel less cognitively aware of my surroundings, it's actually a pretty scary symptom, one that makes me feel very uncomfortable as it is occurring.

For me personally I found that amitriptyline was helpful with my brain fog, it seemed to counter the effects for some unknown reason, however I don't believe that my brain fog was necessarily related to my POTS since it wasn't typically brought on by what I was doing physically. Though since my POtS symptoms got worse I find I have a new form of brain fog when I'm pushing my limits physically, this amitriptyline does not seem to help, but it's shorter lived and I can tell that I am setting it off by pushing my body too close to its limits.

Well ruling some stuff out with medical tests (Lyme, Sjogrens, etc.) can always be helpful, but I think it can leave you with the "Then what can it be?" Once that stuff is ruled out. I still get into that mode of thinking on particularly bad days, or when a perplexing new symptom arises. From my own personal experience here are some things that have helped me: -Taking daily action like wearing compression stockings and salt/ water loading, taking meds even when I'm feeling "fine" that day. -Plan out the activities/ chores that I'm am going to do throughout the day in the morning so I don't get sidetracked into living in the comfort of not exerting myself even when I know it won't hurt me. -Mindfulness and meditation practices, this is something I try to do each day a great book on mindfulness is called The Unteathered Soul -I'm recognizing how much anxiety about things that will make me worse affects me (for example going out with friends when I won't know where we will park, how much I'll have to walk, what will be the plan for the night, etc) so I make it an effort to get out of the house just to be out of the house like going and getting lunch, or taking my dog to the dog park, just to keep my mind and body out of its comfort zone -and I think most importantly is taking everything one day at a time, having patience and being ok on bad days where I can't be more active in life, and making a list of a few things that I want to do and make a priority to at least try and fail to do those things than not do them at all

It's so strange, I can't really carry anything of weight for only a few feet doesn't matter if it's 10 ibs or 40 ibs, but if I carry relatively heavy items (10-30 ibs) a medium distance then I do okay. Long distances im pretty reluctant to try.

Wondering if anyone noticed any contradictions with their body like this; if you have me slowly walk a block or two I can get an immediate onset of symptoms, but when I did my stress test which is much more physically strenuous and starts pretty immediately I didn't feel as bad. Similairly carring anything of weight (5-20 ibs) even for a few seconds I can immediately make myself feel terrible, however when I carry my groceries up to my apartment I don't feel as bad, and their probably 20 ibs and one flight of stairs up. It is as if I try to do things slowly and carefully my brain falls apart, but if I just grab everything and go then I usually have a much better reaction.

Yea, sounds like vertigo, those quick head motions tend to cause them in my case as well, did you find it went away quickly or stayed for a while?

When I overdo it physically I would notice that when sleeping at night I could wake up and just feel that generalized "bad" feeling in my body/ chest, kinda felt like I was dying or was just going to stop breathing, but that never happened. And when I go to fall asleep I've noticed I can get this quick onset of suddenly feeling vertigo which jolts me awake.