bamagirl Posted November 23, 2005 Report Share Posted November 23, 2005 Who here has flares? I would like to know if anyone here has flares and what happens during those flares. Any nuerological, muscular, cardio, emotion, sensory-anything. I know most everyone has this every day, but need to know about the ones with waxing & waning flares and the symptoms. I'll go first.I'll get tachy but not an adrenaline rush for a couple of daysMy vision will get very sensitiveI'll get dizzy & nauseaousMy skin will burnI get a creepy crawly feeling or tingling sensation over my bodyI get sleep paralysisI get insomniaMy legs will turn purple and blotchyI will have an adrenaline rushI have horrible nightmaresI will twitch in my arms and legsI get goosefleshMy bp will get very lowDoes this sound familiar to anyone and does anyone have this same pattern?thanks guys!bamagirl Quote Link to comment Share on other sites More sharing options...
Kitsakatsa Posted November 23, 2005 Report Share Posted November 23, 2005 Yes, Yes and Yes. Exactly as you described. I have a scale that shows the amount of water in your body (Bed, Bath & Beyond) and I will notice that right before I have a flare, my body water will drop to 34.0. 36.0 is after I've gone to IV therapy and I have less symptoms. I'm trying to manage my water table and see if that helps with the flares. Another effect- I will get a flushy warm feeling even when standing for a few seconds. Then I know to grab the high sodium soup stuff, prioritize my work load at work and prepare to take it a little easier (if not just go to bed) for a few days. The funny thing about flares is that you always try to think about what you have done wrong. Mayo told me that we have only about 40% control of them. We can up the sodium, avoid all of the stuff that makes pots worse, but flares depend on what the brain decides to do and most of the time it is beyond anyones control- so pamper yourself and don't beat youself up about them. Quote Link to comment Share on other sites More sharing options...
DSM3KIDZ Posted November 23, 2005 Report Share Posted November 23, 2005 I used to get more flares seeing mine has been constant the last couple months. I would get fatigue, nausea , migrianes and sore muscles for about 2 weeks than it would go away for 2 weeks. It cycled like that for a year. Who knows what's going on now!dayna Quote Link to comment Share on other sites More sharing options...
mom4cem Posted November 24, 2005 Report Share Posted November 24, 2005 I get flares w/many of the symptoms you describe. There are times when I am in a long flare up and times when it does wax and wane with a couple of good days in between(yeah!)Chills, teeth chatters, tingling in the scalp/back of the neck, feel every beat, adrenaline rush, tachy, dry mouth, pressure in head and behind eyes,can't focus well and then some during a flare. Before a flare I start to feel like I am crawling out of my skin, notice that my hr is going up slowly then the symptoms will start. I can't abort these though I have tried Quote Link to comment Share on other sites More sharing options...
Dawg Tired Posted November 24, 2005 Report Share Posted November 24, 2005 I think for the first year I was in a constant flare. Now I will have a week or so at a time. Skin burnstachynauseaIBStachyextreme fatiguenothing smells/tastes rightemotional lowpail in all my joints - I feel inflamed all over! Quote Link to comment Share on other sites More sharing options...
Mrs. Glass Posted November 24, 2005 Report Share Posted November 24, 2005 Many of the symptoms you have described are very real to me also. Although I did not know that it was called flares. What I am going through the worse right now is sounds. Any sudden sound will set my body off. I hate it! The telephone rings, or my grandsons are a little too loud, even my little dog yapping will set me into a tailspin. So everyone is trying to keep it as quiet as possible for me, which I hate even more. Dont know how long this one will last hope when it is over my body will give me a little break before it starts something else. So here is a list of the ones for me. Vision, dizzy, nausea, tingling sensation, insomnia(even with ambien cant sleep),twitching, gooseflesh, low b/p, also every time I move my head or my eyes. Hope this helps you some. VanessaWho here has flares? I would like to know if anyone here has flares and what happens during those flares. Any nuerological, muscular, cardio, emotion, sensory-anything. I know most everyone has this every day, but need to know about the ones with waxing & waning flares and the symptoms. I'll go first.I'll get tachy but not an adrenaline rush for a couple of daysMy vision will get very sensitiveI'll get dizzy & nauseaousMy skin will burnI get a creepy crawly feeling or tingling sensation over my bodyI get sleep paralysisI get insomniaMy legs will turn purple and blotchyI will have an adrenaline rushI have horrible nightmaresI will twitch in my arms and legsI get goosefleshMy bp will get very lowDoes this sound familiar to anyone and does anyone have this same pattern?thanks guys!bamagirl Quote Link to comment Share on other sites More sharing options...
d4g7 Posted November 24, 2005 Report Share Posted November 24, 2005 I also have symptoms similar to these, but didn't know what they were called.On top of what you get, I get a strange sensation, that feels almost like my skin has moved, for instance if I touch the top of my hand, it feels like I'm touching my wrist (where your watch goes), or I'll touch my forehead and it feels like I'm touching the top of my head - it's like everything has moved a couple of inches - if that makes sense. Quote Link to comment Share on other sites More sharing options...
Dizzy Dame Posted November 24, 2005 Report Share Posted November 24, 2005 I also have symptoms similar to these, but didn't know what they were called.On top of what you get, I get a strange sensation, that feels almost like my skin has moved, for instance if I touch the top of my hand, it feels like I'm touching my wrist (where your watch goes), or I'll touch my forehead and it feels like I'm touching the top of my head - it's like everything has moved a couple of inches - if that makes sense.YES!!! I call it "phantom itchiness" because I usually notice it when I go to scratch an itch. It's wierd, and for me, a little scary. How long does this last for you?? I usually get this sensation for a day or two and then it passes. I thought I was the only one who had this. I'm going to ask about it when I go to Vandy in December. I'll let you know what they say. Quote Link to comment Share on other sites More sharing options...
d4g7 Posted November 25, 2005 Report Share Posted November 25, 2005 Wow, someone else with Phantom Itchiness - I'm not alone!!!It usually lasts a couple of days with me to, it is weird and scary - it almost feels like you're living in someone elses skin that hasn't been put on properly (if that makes sense at all).If you get any info, I would appreciate it - as I am in Australia, the neurologists probably don't have as much information as your guys do. Quote Link to comment Share on other sites More sharing options...
Gracefulprincess Posted November 25, 2005 Report Share Posted November 25, 2005 yeah i have most of these symptoms, except for the nightmares. When i get "flares", (I call them close calls cause most of them time i'll end up blacking out) I first start getting really confused, for example when i was working i used to make alot of mistakes. Then i get migraines, nausea, sick to my stomach feeling, chills, light and sounds will bother me, my blood pressure will start to crash, hr shoots up feels like it will beat out of my chest sometimes, dizzy, i'll start seeing these sparkles everywhere, skin goes pale, lose my strength, etc. Quote Link to comment Share on other sites More sharing options...
d4g7 Posted November 25, 2005 Report Share Posted November 25, 2005 Hi Bamagirl,I get the same symtoms I know, but after reading your post and carefully anylising what happens to me is:1. Normally in the evening I will get very excited, and want to talk about my family.2. I wake up very early in the morning, about 5am, and am very creative, I either paint, write or sculpture.3. I have a small breakdown to the ones close to me, even over the silliest things, and I get very irrational, at this point I tend to have severe memory lose, or brain fog as it is referred to on here4. Next day, I wake up very tachy, and need to take a triple dose of beta-blockers to even get out of bed.5. Closely followed by a deep depression.6. Normally have to go to hospital for tachy and low bp.7. Severe night terrors, cold sweats, and terrible insomnia, along with not being able to be woken up in the morning.During stage 7, I find I get pooling of blood even in my hands whilst sitting - I call them toilet hands, as that is when I seem to notice them....8. I will get the 'phantom itch' as decribed in a previous post.Foe me it tends to take at least 10 day to get over these 'flares'.All I can say is be strong, you're not in this alone.Take care, and be well.Daniel Quote Link to comment Share on other sites More sharing options...
Jacquie802 Posted November 25, 2005 Report Share Posted November 25, 2005 Having heart arrhythmias, vestibular hypofunction, AND POTS (nothing else I know about lol) I experience lots of symptoms like...dizzinessvertigotachycardiapvc'ssweating-even in cold weatherpallorlightheadednessnumbing in legs and armsheadachesFATIGUEdisequilibriumblurred visionhypotensionnauseaHopefully no other symptoms find me!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Quote Link to comment Share on other sites More sharing options...
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