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Everything posted by AshleyPooh

  1. My NCS came about a few years after I was diagnosed with Hashimoto's Thyroiditis. (my brother has Ankylosing Spondylitis btw, isn't that interesting?) I have phases where my dysautonomia seems to almost go away, it's so easily treatable. Then there are times like the weeks before, where nothing I did could stop it, I was in misery. Also as to the Chrohn's thing... after my dysautonomia kicked in, I developed terrible gastrointestinal symptoms. Actually, I developed them before I realized I was having dysautonomia issues. I actually went to the hospital once for unexplained severe upset stomach ( no answers, was told it was IBS). After the dysautonomia started, or while it started, I suddenly become unpredictable. I can be fine one moment, then suddenly an 'urgency' hits, and i'm running off to the nearest restroom. It makes me feel ridiculous, but that's what it does. It's like my nervous system is triggering it on accident!
  2. I think it's safer to get the vaccine than it is to catch the actual Shingles, because Shingles looks horribly painful. Just ask your doctor about any side effects or adverse reactions to expect
  3. I've been wondering for a while now why the dark circles stay there. I have them permanently, some days they are less noticeable, but they stick around. It has to be a blood flow thing I guess, but isn't that bad for your eyes?
  4. Thanks Katybug. I will probably eliminate caffeine for sure, unless i do have the headache. I don't have a clinic at my school b/c it's a community college, but I am hoping to start seeing someone at another clinic than the terrible one i go to, so maybe that'll help. I will look up migraine diet lists. Also, I can't really take anything for the migraines anyway. Aspirin and NSAIDs are completely off limits for me, as my stomach cannot tolerate them ( or i'd take them for arthritis too oh well)
  5. I had my eyes checked about a year ago (before my ncs diagnosis) because of visual problems that wound up turning into a silent migraine, or that's what they say it is. Problem is, it's becoming more frequent, so I'm wondering if I shouldn't get my eyes checked again? at least for the eye pressure thig, because otherwise I'm out of luck figuring it out
  6. I am definitely going to try this, because i am developing almost constant silent migraines (along with a few actual pain migraines) and so far I have no idea what to do. This at least lets me test something out!
  7. So I was reading up the other day how certain Adrenal dysfunction disorders are misdiagnosed as dysautonomia, because of the orthostatic symptoms that kick in with both disorders. Have you ever heard of Adrenal Insufficiency? It causes dysautonomia, nausea and weight loss, among other things like anxiety and exhaustion. Even if that is not anything like what you are dealing with, I will say that since the ncs kicked in, I have had very crazy stomach issues. It seems like my body will suddenly 'trigger' my digestive system randomly, and I'll have to stop everything I'm doing immediately and go deal with it It's bizarre, almost like you hear people with IBS complain about. It really feels like the ncs is doing it though, because I didn't have this issue before. A GI doc may be a good place to start, but I'd definitely ask your doctor about other things as well. One clue to Adrenal insufficiency is hyperpigmentation. It causes the skin to darken and ' tan' almost, especially around creases in skin. So if you are becoming abnormally tan these days, I'd take that as a sign to talk to the doc about it. I used to think I had adrenal insufficiency, before i was diagnosed with ncs, but I didn't have the dark skin thing
  8. Hi everyone so I discussed my visual / migraine like problems with my cardiologist, and she seemed to think it was more neurological, not part of the ncs. She tried to send me to a neurologist, but the program that helped me see her can't send me to one, as no neurologist is donating care right now. So I'm pretty much left stuck with a bunch of rather bothersome symptoms and no way to correct them! I've mentioned them before, but I'll go down the line and see what you guys/ gals think would be the best way to deal with it: Silent Migraine symptoms: usually visual, I get blurry eyes, light sensitivity, a feeling of disconnectedness, and pressure pain behind the eyes. I've actually developed red veins in my upper eyelids because of eye strain due to this! When I get the visual symptoms, my concentration plummets. Trying to work through this is like trying to work through being medicated on weird stuff, you just can't hardly do it! I even had a real migraine the other day, my first one with full on pain, that kept me bedridden for hours. It stuck around for like 2 days after, in a more mild form. I know it's related to the ncs, because before the ncs I've never had migraines or visual symptoms. I don't know what to do about it since I can't see a Neuro to help me. Does anyone know some way near the Tallahassee, Florida area that could help me? Should I just call Neurologists and ask about charity/ payment plans? I hardly have any money but I can't keep walking around in a complete visual haze all the time. (I'm a full time student so this is affecting me academically too). Any advice on preventing migraines or visual migraines would be helpful, or good ways to treat it. I do notice that if i drink a lot of caffeine, my eyes clear up some for a while, but it doesn't keep it away forever
  9. I've had my bp be fairly normal, and my pulse dive into the 30s. i don't know why it happens, but sometimes, after i observe this, my blood pressure will tank soon after. so for me, it's sort of a warning sign and I start trying to correct it before the real problems start hitting.
  10. I am pale but that's because I don't get into the sun (for the obvious reasons hehe). I do dhave raccoon eyes, which by that I mean to say that I have severe bruising around my eyes that makes me look like I left eye makeup on for days and it's gone and smeared everywhere. I've tried mentioning this to docs before but for whatever reason they ignore it. Also , now because of eye strain caused by my visual and migraine like symptoms, I have developed red veins on my top eyelid that looks just awful. I've resorted to using concealer to hide the bruised eyes, and pale skin colored eye shadow to hide the veins.
  11. E Soskis: What's the plasma exchange for? Just curious. Also galatea, I think with all of the similar symptoms that overlap with migraine symptoms, i'm definitely going to ask about a neurologist.
  12. This reminds me of something I was looking up today. It's called Autonomic Neuropathy. I was researching it b/c of a problem with my eyes. It has many symptoms that affect many systems of the body, but it was interesting in that all of the symptoms listed under 'eyes'... were exactly my eye symptoms! Every one! That worries me, b/c i have some other symptoms not eye related that remind me of autonomic neuropathy, like gastrointestinal issues. I might swing this by my doctor and ask for a neurologist
  13. I've always wanted to get checked but can't seem to convince anyone to run the tests. It's like they don't think about a secondary cause, they just assume that my dysautonomia is the main cause of itself! It could be, but I might swing the idea of the hormone issue by the doc anyway
  14. see Pink, that's what i was worried about. I'm worried it's just 'lack of oxygen' or bloodflow to the brain. It honestly does feel like a silent migraine, but I can't be having them everyday, but I will definitely talk to my doctor about it when i see her on the 11th, and see what she thinks. maybe if nothing else, she can send me to a neuro? Also Fainting Goat... is it just me or is that the first thing each new NCS/ POTS patient thinks when they get diagnosed? The fainting goat thing? lol that's the first thing I thought... Now instead of calling it NCS i just call it 'Fainting Goat Syndrome'
  15. Okay so I've started school recently, full time student now at college. I've developed some symptoms that I can't seem to figure out, and I have no idea what to do about them. Basically, if you know how your eyes feel during a silent migraine , you'll know what i'm talking about. I have light sensitivity, I don't like looking outward and focusing on anything too far from me... my eyes are always squinting now, eye pressure feelings, disoriented and getting carsick VERY easily. It's not a migraine though, b/c i don't have the headache, and it's happening all the time now, not episodically. I get it every day, most of the day! I don't know what to do! I'm going to my cardiologist on the 11th to ask her about it, but is there anyone out there with an idea of what I can ask her? Any ideas on what this is? B/c it's driving me crazy, making me literally sick feeling a lot and just worn out and makes my eyes constantly want to be closed or have sunglasses on them!
  16. Also I just wanted to share a video I came across that might help you : http://www.youtube.com/watch?v=423JhqFygI4#t=211 A news reporter who was reporting on the grammys apparently had a migraine right in the middle of her talking on camera. She literally starts speaking gibberish, fumbling words and you are like ' omg what?' . she says after the report she collapsed, her face went numb, and went to the hospital. They told her she had a complex migraine. Apparently they can get that severe
  17. My first migraine happened not long before my tilt test and diagnosis. I thought i was going nuts lol. I had been feeling off all day, but then when i was in the kitchen cooking i started having weird stuff in my vision, like instead of dark spots, i had light spots, and weird shimmering stuff going on in my peripheral vision, like stuff was vibrating. I asked my mom about it ( who has migraines) and she went: Do you have a headache? Well.. no mom within ten minutes I had a headache I still get silent migraines that affect my vision. A lot of it happens at work, so i'm beginning to suspect it's the bright flourescent lighting triggering it? I just get weirdly sensitive to light and sound, vision is bubbly and i'm very irritated when it happens. Btw, my mom was told once that she had mini strokes, or TIAs. She had the same symptoms you are describing , so if you are experiencing numbness and slurred speech i really recommend going to get checked out about that. It could be the migraine ( migraines have been known to do that if they are bad enough) but if that's the case you need to shut it down, and a doc will help you find appropriate treatment to do so
  18. Not sleeping makes me way way worse, because my body does not handle the stress of sleep deprivation well. It's why I warn people that I become temporarily insane when I lose out on sleep Not only do i deal with the mental aspect of it, the desperate anxiety and need to sleep, irritability etc, but then i deal with the worsened dysautonomia symptoms, and that makes me even more annoyed, until I'm a walking time bomb who also needs to sit down a lot lol. I always tell people that if you want to get me on a murder charge, just force me to stay awake a couple of days, and let me loose on the nearest poor soul.
  19. I recently got sick ( on christmas eve). I had a virus that was much more than a cold, but i'm not sure if it was the flu or just a flu like virus. I didn't have fever either, but I felt very achey. The main things that distinguish a cold from a flu are 1) fatigue: In a cold, it's mild and annoying. In the flu, you are pretty sure you are gonna be bedridden for days. 2) fever: in a cold, a fever never usually reaches a high level. in a flu, if you get a fever( not everyone gets one, like i didn't), then the fever tends to be moderate to severe In my case, for about 2 days I hardly got out of bed. Being up for even a few hours made me insanely miserable, plus my sinuses were going so crazy my face was all puffy and horrible thank goodness i'm feeling a lot better now, just dealing with leftover Bronchitis Also I will warn you: be very careful of cold medications! I got so bad off i started taking daytime cold meds to function... and yeah it has stimulants in it so beware if you find yourself more run down and out of breath than normal. And don't ever take anything like that at night! Good old Benadryl will help you sleep and celar up a bit of stuff
  20. mine fluctuates sitting in the same spot. makes you wonder why it does that so bad when i'm sitting though, since it's supposed to be an orthostatic problem... also found that being sick can alter your readings drastically. While i've had a flu like virus, my bp actually wanted to stay up near a normal level, but as soon as the virus started leaving, (but i developed bronchitis) my bp started plummeting and now it's worse than normally is
  21. I do wonder about inflammation for myself. I have what doctors first tried to say was fibromyalgia, then myofascial pain syndrome ( as it mainly occurs in my shoulders and upper back.) I wonder if it's not really an inflammation issue from something I don't know about. If i had insurance i'd investigate further, but no one wants to mess with me :/
  22. Before my bp meds, I had wildly fluctuating blood pressure. I could take it one second and it would be fine ( 112/70) , then the next time it'll be in the 80s/50s... 70s /40s etc... The craziest thing though is watching my pulse. My cuff of course checks the pulse as well, so I can have a good blood pressure reading, and i'm all happy about it until i realize looking at my pulse (115 or so) that the reason my bp is fine is b/c my body is fighting not to short circuit. I've seen my pulse go from 115 one checking... to 42 the very next, a minute later. You can imagine how that makes us feel all the time.
  23. I don't have POTS, I have NCS, but they are very similar in their root causes, and symptoms, so I will add my input here. Ever since my dysautonomia set in, i have noticed changes in the way i handle certain 'stresses'. For instance, I do not like bright lights, loud sounds, or really anything that overstimulates me, such as getting angry or upset. I have noticed that when my ncs acts up, I sometimes tremble. I think this is due to overstimulation perhaps, or exhaustion. I would say that for you, having convulsions COULD be psychosomatic, but I would never assume that, and I would be looking into other causes while I was getting checked out for anxiety issues. I do know though, that if i were stuck in a tube with horrible flashing lights, I'd probably react badly too, and I don't have convulsions so that should tell you something
  24. Although I'm skeptical about chiropractors ( half of them are quacks, at least, but some are legitimate and do good), I am interested in the idea that this could be for some folks, a spinal problem. I have myofascial pain syndrome, usually in my upper back and shoulders. My mom has degenerative discs, and I always wondered if part of my problems in my back were from something like that. Also wondered if any of my weird dysautonomia stuff (silent migraines for instance) are from that. Of course, I don't have insurance, and so I won't be finding that out for a long time, but I imagine that I still have NCS, and that anything from my spine is just added symptoms.
  25. My experience is this: I went in and got blood drawn(just to make sure all is well with me before doing the test). Then i was strapped to a bed, and lay there for a while. then they raised the bed up and i stood there while two people ( a nurse practitioner from the cardiology office and a nurse) took notes and watched me. It only took me a few minutes before I started having symptoms, which is hilarious b/c in real life, i never got that bad off, b/c i was always fidgeting my legs. Well in the tilt, you can't fidget your legs...so you will probably know pretty soon whether or not you are going to go down. I didn't fully go unconscious, thanks to nurses paying attention and getting me flat fast enough, but do prepare to feel drained, tired, and weak afterward. And be careful to REST the next few days, as you don't want to re trigger a faint. you are more fragile and succeptible to them after your test for a while. I was given gatorade and crackers btw
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