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About AshleyPooh

  • Birthday 02/19/1987

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  • Gender
  • Location
    North Florida
  • Interests
    I love to read, write, and watch movies. I love animals, and have 4 dogs and 2 cats. I want to become a nurse , but we'll see how that goes after I begin treatment.

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  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!
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