stephsurf Posted October 6, 2014 Report Share Posted October 6, 2014 Hello, I know from the title you might instantly think well of course there is a pattern. However, some days when I am being a little bit forgetful I can get through a day feeling quite alright on maybe 1-2 drinks less than I would usually have. Bearing in mind I probably have about 3-4L per day generally. Other days I find that I can be drinking relatively well or should I say normally but get these 'flares' which seem to last between 4-6 hours generally (however, most of that time is the aftermath). I started to think they were panic attacks because they weren't necessarily related to what I was doing, the energy I was expending and the amount I was drinking, despite me not feeling anxious (I guess the feeling your about to have an episode does make me a little anxious and maybe sometimes I confuse the anxiety feeling with the actual pre-syncope symptoms) but without fail every single time if I rapidly drink a good litre and a half of water I can bring back my pulse to its normal resting point or there abouts. This doesnt make me feel 100% better, I guess I still get very fatigued/wiped out (wired but tired?) and feel inwardly shaky, headache etc afterwards, but surely that would not have the same effect if it was in fact a panic attack? and also panic attacks don't generally last hours right? What makes me question my initial thoughts as well is I can do everything possible to relax but unless I actually salt and fluid load it makes no difference. I also understand that POTS can be mistaken a lot for severe anxiety and panic disorder so I guess because so many people keep telling me it might just be me that I am beginning to doubt myself.I am also starting to question whether there is a little bit of hyperadrenergic POTS involved (as the feelings prior to these attacks feel very much like I have had a release of adrenaline (again I can't differentiate that between the feeling of anxiousness that I'm about to have a flare or whether it is actually happening..but they usualy happen at times when I don't actually have anything of note to even stress me out (although I guess they do occur quite frequently after exercise) if that makes any sense. All I can say is that the first time it happened I was obviously generally panicked so it was much worse. Now I know what is happening I just deal with it, knowing that it has always got better. The reason I question this at times when these happens is because I got this more likely after a bad viral infection... which is not usually linked to hyperadrenergic POTS and all my symptoms only started after this. I guess i'd rather it wasn't either as then my exercise program wouldn't have the desired effects I am hoping for even though it would still help. Likewise I do get spikes to blood pressure but these only occur during these episodes with fluctuations between high and low and not in between so again I don't know whether some sort of panic in these situations is masking the low blood volume/blood pressure aspect and therefore I do have a relatively common variation of POTS - as of yet I have had no other testing due to the relationship between the viral infection. I guess it would be just good to hear or reassuring to hear if anybody else gets the same 'flare/attack feelings' and experience them similar to me. I guess the fact I am definitely better than when I initially got diagnosed is brilliant, it is just a little bit disheartening that these 'attacks' just seem to be so random in nature and can occur when I feel like I am having a 'good' day, but then maybe I overestimate my 'good period' and then forget to drink. Or maybe I really do need to be more stringent with my salt/fluid intake than I am being. If I can drink till the cows come home and prevent these from happening completely that would be my ultimate goal I guess!Thanks for reading the ramble! Quote Link to comment Share on other sites More sharing options...
Raisin Posted October 6, 2014 Report Share Posted October 6, 2014 Well, I noticed you said you chug down some water when you feel a flare coming on. My neurologist said that if we drink 16 ounces of water (must be only water) when having a bad day and or first thing in the morning before even getting out of bed, it raises our blood volume for a few hours. Therefore, it sounds like you are naturally doing what you should. Also, even "non hyperadrenergic" pots pts. Can have a significant increase in Norepinephrine (mine was 750 when standing, normal top of range 500) and have that "fight or flight type of response. Therefore, it sounds like maybe what you are experiencing IMO is pretty normal for pots. Thanks for reminding me I need to drink more during the day. Maybe I will feel better more often if I keep up with it like you said. Easy to slack off the water when I am feeling better as well! Quote Link to comment Share on other sites More sharing options...
stephsurf Posted October 7, 2014 Author Report Share Posted October 7, 2014 Well, I noticed you said you chug down some water when you feel a flare coming on. My neurologist said that if we drink 16 ounces of water (must be only water) when having a bad day and or first thing in the morning before even getting out of bed, it raises our blood volume for a few hours. Therefore, it sounds like you are naturally doing what you should. Also, even "non hyperadrenergic" pots pts. Can have a significant increase in Norepinephrine (mine was 750 when standing, normal top of range 500) and have that "fight or flight type of response. Therefore, it sounds like maybe what you are experiencing IMO is pretty normal for pots. Thanks for reminding me I need to drink more during the day. Maybe I will feel better more often if I keep up with it like you said. Easy to slack off the water when I am feeling better as well!Thanks so much for getting back to me - I think this norepinephrine is something to get tested even as some reassurance as to that's what's actually happening to me by no control of my own rather than me inflicting it on myself! I wouldn't be suprised anyway as I usually feel a bit wired most days for no particular reason. So I guess getting anxious on top of an already high level does nothing to help matters! Like tonight I find when I get stuck in one of these flares it literally lasts until I sleep it off and restart again the next day. I find I often need more than than 16 ounces to bring me back down to a normal level and I then have to be pretty strict with continuing drinking afterwards more so thn usual otherwise it keeps reoccurring again and again! That's what I mean if I can be reassured that this won't happen if I just really do drink drink and drink in the first place - more so than I do now then I think I'd feel much better but sometimes it's difficult to drink so much in so little time! Quote Link to comment Share on other sites More sharing options...
Raisin Posted October 7, 2014 Report Share Posted October 7, 2014 Yeah. I hear ya. Oh! I forgot to mention that the neuro said I have to drink the 16 oz. within two minutes for it to work. This, of course, makes me feel like I am drowning. Lol! I definitely felt better getting the standing Norepinephrine tested as like you said, it told me that something physiologically was going on and we all seem to feel better knowing it just isn't "in our heads". So, thanks to you I drank more water yesterday and have some bottles right next to me now! Cheers mate! Quote Link to comment Share on other sites More sharing options...
stephsurf Posted October 7, 2014 Author Report Share Posted October 7, 2014 Yeah. I hear ya. Oh! I forgot to mention that the neuro said I have to drink the 16 oz. within two minutes for it to work. This, of course, makes me feel like I am drowning. Lol! I definitely felt better getting the standing Norepinephrine tested as like you said, it told me that something physiologically was going on and we all seem to feel better knowing it just isn't "in our heads". So, thanks to you I drank more water yesterday and have some bottles right next to me now! Cheers mate!Yes I know the feeling of feeling like your drowning from water consumption too! I think I've probably done it within 2 minutes before unknowingly just because I have felt so thirsty. I've decided to be really careful about drinking water today with my electrolyte tablets and see if does Infact make a difference to my general feeling! Fingers crossed!! Quote Link to comment Share on other sites More sharing options...
Raisin Posted October 8, 2014 Report Share Posted October 8, 2014 Fingers crossed! Let us know! Quote Link to comment Share on other sites More sharing options...
looneymom Posted October 8, 2014 Report Share Posted October 8, 2014 My son will drink 2 liters of water a day but since he has started back his 3 a week treatments it has affected his electrolytes. So he drinks 12 ounces of water with his midodrine before he gets out of bed in the mornings. Then when it is time for him to drink again, he starts sipping on 12 ounces of G2. This is lower in calories and sugar then regular gatorade. He drinks 2% milk with meals. Besides the milk, I alternate the water and g2 through out the rest of the day to help balance his electrolytes. With all his fluids, he drinks at least 2-3 liters a days. To remind him to drink, I set a timer every 30 minutes. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted October 10, 2014 Report Share Posted October 10, 2014 My POTS fluctuates totally independent of volume status or all sorts of other variables. it is just a fluctuating illness at least for me and my volume status may help me cope with the symptoms but the underlying problem is not down purely to volume status or we would all be 100% cured by florinef. Quote Link to comment Share on other sites More sharing options...
stephsurf Posted October 11, 2014 Author Report Share Posted October 11, 2014 My POTS fluctuates totally independent of volume status or all sorts of other variables. it is just a fluctuating illness at least for me and my volume status may help me cope with the symptoms but the underlying problem is not down purely to volume status or we would all be 100% cured by florinef.You make a very good point! Thank you for that Quote Link to comment Share on other sites More sharing options...
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