Tuesday

Has anyone else experienced a complete shift in their symptoms over time? It seems like 4-5 years ago my major symptoms were tachycardia, palpitations, low blood pressure, and lightheadedness. Now, I am dealing with high blood pressure, visual problems, headaches, and nausea in addition to dizziness/wooziness (which I would classify as different than lightheadedness). I guess I'm just wondering if this is common, for the symptoms to change and vary so much over time?

Yup, what you describe definitely sounds like "scintillating scotoma," a type of migraine aura. I get it, too. It's not exactly the same as ocular migraine, but a lot of people confuse the terms. It starts as a small area of distortion/light that almost seems like you scratched your eye, or there's something in it. It will expand gradually over the course of 30 mins to an hour. There is an area in my field of vision where I can't see anything - just like someone cut a hole out of my field of vision. Around the edges it is shimmery and sparkly and flashing, kind of like an oil slick appearance? I don't know if antibiotics specifically have an effect on it, but that's what it sounds like. There are meds you can take to ward off a migraine, but if you don't get the headache afterwards it may not be worth it. From what I understand, it's not dangerous, just scary. Here is some more information: http://en.wikipedia.org/wiki/Scintillating_scotoma You also may want to just research migraine aura in general, specifically visual migraine aura.

I'm not quite sure how to answer your poll, but I do have flares where I am pretty much housebound for sometimes days, sometimes a week or two (or three) at a time. It comes on suddenly, with no apparent triggers, and leaves just as quickly. I just spent the last two weeks dealing with that, only to wake up two days ago feeling back to normal. It's different for each of us, and it seems almost impossible to predict any sort of "standard progression," which can be incredibly frustrating. I can say that it seems like we all go through periods of not being able to function, though. So you're not alone in that.

I have/had bradycardia, and I was put on Toprol for awhile (for tachycardia) and I really couldn't tolerate it. My heart rate ranges from 38 sitting down to 140 standing and walking across the room. The beta blocker made me ridiculously tired and fatigued, to the point I didn't feel I could function any more. It's worth giving it a shot, but you should know fairly soon if it's going to work for you. As for my tachycardia, it has settled down once I got my blood volume and blood pressure under control, but now I'm having high bp instead of low.

I am sooooo happy to see that other people deal with this too! Living in a Dali painting is a wonderful description. Yeah, it could totally be migraine, too, I suppose.

I don't have an answer for you, but I'm pretty sure I experience the same thing. It's not quite dizziness or lightheadedness, but it makes you feel like you could be easily put off balance or that your brain is working more slowly to focus on things around you, right? Almost like eye strain, sort of? At least for me it seems like I just can't quite focus on things correctly, and seeing/comprehending things takes longer than normal. I'm sure it's not my eyes, because it will go away after a few days or weeks and I'm "normal" again. I just got over a two week bout of whatever that is. I was also sick to my stomach the whole time, like two weeks of being car sick. I never actually threw up, and I don't know if the queasiness was due to being dizzy from whatever the visual disconnect was, or just from being sick in general. I also had joint pain in my knees and hands. I'm waiting on blood work for suspected autoimmune issues.

I have a wrist blood pressure cuff that reports heart rate, too. It stores I think 20 readings in memory? I recently had to keep track for my doctor, and just measured a few times a day and kept a log.

My cardiologist wants to put me on an ACE inhibitor since my BP has been high the past few weeks. Anyone on one? How has it worked for you? I've been on midodrine in the past for low blood pressure, and I'm still on florinef now. I'm also waiting on blood work to see if there's anything autoimmune going on. Normally my bp is low, so having high bp has been a change for me.

Palpitations are usually a symptom of something else - low blood pressure or low blood volume. If you find something to treat those successfully, the palpitations will usually diminish (at least that has been my experience). I could not tolerate beta blockers either, but once I got my blood volume/blood pressure sorted with Florinef they went away.

I don't necessarily think the injury had anything to do with causing it. Joint pain is fairly common with POTS. Right now I'm experiencing some really rough pain in my knees along with high blood pressure, dizziness, and nausea. Injuring your knee may have made the pain more intense in that side, though.

I know how this feels, completely. When you're not symptomatic, you're able to keep up with the world around you, and you start setting up goals and plans and objectives for yourself. You work towards them, and then all the sudden - BLAM. You're having a flare and you can't keep up with the things you want to and no matter how much you want to do what you were doing, you can't. In a very real way you are grieving your illness. Grieving a loss of functionality, a loss of independence. Even if you're not completely disabled by your illness, you are still coping with having something that you can't control impact your life in such a fundamental way. I'm not severely limited by my symptoms all the time, but I think over time learning to accept that I am disabled (in my own ways) has actually helped me get through some of the anger and doom and gloom. For me, the trigger seems to be the frustration of not being able to control my symptoms, not having a plan to get things back on track. It is incredibly frustrating to lose that sort of control, and we all place so much responsibility on ourselves to try to keep ourselves healthy. Sometimes we just have to understand that there's nothing we can do to affect change to the situation and accept it. It's only then that we can start focusing on what we still can do, and finding new/alternate ways of staying fulfilled and challenged. Sorry for the long ramble, I've been going through this a lot myself lately, too.

Towards the end of last week I had a flare of joint pain bad enough to keep me from being able to sleep. I went to the doctor and they are doing some blood work for RA, but while there my BP measured in the 150/90 range! She gave me a prescription for prednisone and it seems to be helping, but my BP is still really high. It was 151/98 when I checked last night. I am on Florinef daily. Without it, my BP is around 90/60, and with it I've been pretty stable around 120/80. The high BP came at the same time as the joint pain, does anyone have any idea why that might be? I've got a call in to my cardio to see if I need to stop taking the florinef (I think I'll hold off on my dose until I hear from them just in case). I quit taking Midodrine and Florinef before when I was on them because my BP was spiking like this. But inevitably things go south and my BP plumments and I'm back on one or both of them. Does anyone else go through that low/high BP cycle?

I was off Florinef for about 6 months and wasn't able to lose any of the weight. I wonder if the amount of time you've been on it makes a difference? Whether you have more of it built up, or the effects last after you stop taking it?

Yeah, I have considered it might be a food sensitivity. I've had something similar happen in the past. The only problem is I've listed everything I ate for the day or so before I started having symptoms and can't find anything out of the ordinary

I gained about 25-30 lbs after starting on Florinef. I went from 95 lbs to about 125. I exercise very regularly and run 5ks and obstacle races, and it's been absolutely impossible for me to lose weight.

Ibuprofen isn't even touching the joint pain. Benadryl knocks me out completely so I can't really take it during the day. Blargh!

I have the same issue. I wish I could take my arms off before I go to bed I also tend to curl up into as tight a ball as I can get.

So, it looks like I'm dealing with another flare up over this past week. I'm having lots of joint pain, and my joints (knees especially) just generally feeling loose. I've had bad headaches and other migraine aura symptoms, hives/itching, and my general daily dizziness. Anyone have any ideas for relief? I don't think it's worth bothering a doctor unless it gets too bad or more severe than I'm used to, but I am just frustrated and annoyed and I need to get some rest. Have not been able to sleep well at all for days.

Do you use salt tablets? I find that salt from my diet is nowhere near enough to actually help. On bad days I can take 4-5 salt tablets (along with plenty of water, of course) before I feel hydrated.

I can't speak to any medically or scientifically significant findings, but anecdotally that seems to be true in my case. I was on Florinef before for a few months and it did not seem to make a huge difference. I have been on it for about a year now and my blood pressure seems to be a lot more stable than it ever has been. My water and salt intake have not increased drastically.

The only thing I have learned about crashes/flares is that there is no way to really know what to expect. Sorry

Oh my goodness, thanks for sharing! I think this might be related to something I've experienced. Off to research the ciliary muscle!

When you say vertigo, what kind of sensation do you mean, specifically? I've experienced a few things that could be classified as vertigo: 1. general lightheadedness/dizziness that is like being slightly buzzed on alcohol 2. a wobbly, unsteady feeling similar to being on a boat 3. a sensation of your surroundings spinning around you, similar to being really drunk I deal with the first on pretty much a daily basis. I've had bouts of vertigo for days/weeks where 2. was a pretty much constant sensation, with 3. happening when I moved too quickly, or stood up from laying down, etc. I've been to a balance clinic and was tested and diagnosed with BPPV (positional vertigo as a result of loose calcium in the inner ear) but none of the treatments resolved it, so I am not sure whether that's what it actually was. I've seen many other Dys patients talk about vertigo, so I'm sure there's a common mechanism that we're all dealing with. I just don't specifically know what causes it.

Rest, lots of salt, lots of water. I get it too. Usually, they precede a migraine

I had pretty much constant palpitations for 3-4 months. It's not dangerous (assuming there are no other underlying structural issues with the heart). Like others, I would have hundreds in a day. It became so normal for me that I almost didn't notice it. The palpitations themselves are not something to be afraid of. They are a symptom, and you need to figure out what is causing them (low bp? low blood volume?) and work with your doctor to understand where to go from there. For me, the palpitations were the symptom that finally lead to my diagnoses, so I'm pretty thankful for them They have gone away as I've gotten other things under control with medication.