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Everything posted by lissy

  1. It is very important to be believed but unfortunately I don't think I am...It use to hurt really bad to see my family members just look at me with disregard to my complaints like "yeah right your feeling so bad again"...I think they assume its mental so I have distanced myself from even talking too much about how I feel. I really hate being accused of choosing the time when I feel the worse like during events or when I have something important to take care of, then I magically have energy for things I enjoy. Like I use being sick as a advantage... To be honest I'm pretty lonely with the true f
  2. I have had those shakes/ tremors/ attacks for many years and have been witnessed in many medical settings. Usually they come out of no where for me and no doctors or nurses were very concerned they would give me a warm blanket and they would pass after 30 mins to an hour. I think they thought it was just a panic attack but from experience its usually some sort of over stimulation prior to me getting them. Like being scared, overly angry something of that nature so maybe its a adrenaline attack. Hope you get answers soon.
  3. Hey all thanks for the responses After all the researching California is way toooo expensive and unemployment rates seem out of this world, not a good place for a lower income family...SO my next place to search is Birmingham Al, husband has family there and been reading about the Specialist there:P so maybe south I'll b going. This searching for new locations have been very stressful!!!! And by time its over I could probably win a round on Jeopardy about US States hahaha.. Anyone in AL please contact me I have some questions (kinda personal) Have a great night all:)
  4. Ohhhh Yes very common for me the migraines with and without the painful headaches and Aura the flashing, swirling designs. Have had them for over 10 years I can usually sense it coming before I become too impaired and they last for a hour at the most but I have gotten the auras to go away faster * I immediately close my eyes and sit or lie very still in a quieter area, and place a cold wash cloth on my face or neck and it lasts half the time...And I have been working on finding my triggers too much sunlight even if its coming through the windows, too much noise, stress, not eating regularly s
  5. Low vit D High Cortisol Elevated Liver enzymes High Potassium 1 positive AppT test (clotting time) Low Blood Volume 15% lower Straight neck with no curve on Xray?..
  6. Thanks JP, Yeah looks like I have to search other states:( the price is way out of my families budjet...So that dream will have to be put on hold until I hit the lotto Lol!!!
  7. Hi everybody:) I hate the ups and downs with the weather and I'm seriously considering moving to California before summer ends...I have been there before I became ill and loved it so I'm excited!!!!!!!!!! Can anyone recommend areas( orange county) for nice affordable family living and local specialist? Thanks
  8. We as women try to be as active and positive in our conditions and obsessive at times and if its Not sports or other things men find interesting they are gonna lose interest lol they have shorter attention spans, not that they don't care they just show their love in manly ways...They don't want us ill and its frustrating and men are way different, alot of times they deal with illness on a daily basis and learn to suck it up to support the family, sometimes to the point of neglecting themselves. So in alot of our cases we search and search uncovering the potentially new cause and in their mind
  9. Its is such a wonderful post!!!! Guess I missed it back then... I'd like to add I have the major over stimulation problem and I began listening to music on headphones last year and it has helped some kinda built up more tolerance.
  10. Altruism Anythings possible just prepare yourself this is me speaking after I consider a hard almost 5 year battle...Make sure to minimize your stress and take care of You, and move around like another poster suggested its important. You will learn a New You and its not easy I basically lived on this site for along while ( health issues consumed my life) and that was a bad idea not saying this site is bad Lol I just was on a Mad search all the time.... so just balance everything we're all here for you:)
  11. Some type of mottled color I think it should be
  12. I suspect having mild POTS since I can remember, which got worse after every pregnancy especially after the last that was in 2008 I was bedridden 3 months after delivery and I barely took care of my children but did the best I could, moved a mattress to my childrens room floor I couldn't move very far...It was a serious battle for a year to do minimum things. My situation didn't allow me to not get up no matter how bad I felt When a bottle was needed I had to crawl hold on to walls whatever it took. Mental strength is the most important!!! Even when brain fog takes over and you feel your mind
  13. Absolutely on the eye/ head problem, I noticed it more while walking and I turn my head in any fast movement or look up then down, also if Im sitting watching TV and they move the camera to fast. I Have to stay focused with little head movement like a daydreaming state . I thought it was in the neuro, spine, or ear dept...lol lots to sift through... Apparently its not outside of the POTS problems.
  14. Hi, sorry about all your difficulties:( I'm not around the site too often so can you post what you've already been tested for; As in sheehans, pheocromocytoma(sp)...postpartum cardiomyopathies. I know from personal experience POTS anxiety seems like it lasts longer ( more than the normal 20 minute panic attacks) and all my docs say is they can only say my test rule out anything other thsn POTS ans symptoms sound like anxiety, and they suggest the SSRI's to restart the autonomic nervous system. On the main dinet page and other research papers mention alot of us get dxed with anxiety but seems l
  15. And to add stopping the lining from shedding is not the fix its the ovaries, unless you are anemic then the options would be different.
  16. Hi, I was one that had severe problems due to hormones changes resulting in POTS symptoms being worse, I had a hysterecomy and left one ovary ( found out I had endometrosis) during surgery....my symptoms aren't as severe now but I still feel the flucuations since that ovary is still working so in my case no periods but still feels like I do, just not as bad. ITS been posted about alot so I think its a pretty common complaint :(Im at least 50% better but who knows if that due to getting rid of the endo....There is some hormone therapy that completely shuts down the ovaries but have heard it has
  17. I know the feeling:( I decided to take my 6 year old and 4 year old with me to pick up a few gifts today (2 stores) and whenever out I speed walk helps for some reason... Well while standing at the checkout at the 2nd store GUESS what I'm blessed with Auras so I got sad and panicy wondering how am I gonna drive home..By time I reach the car my vision was completely distorted my kids were very patient but I ended up calling their father to follow me to the grandparents a few blocks away. My body was so weak and completely off balanced and came on suddenly it frightened me, its never happened
  18. I get it as well, and its really bad when watching TV with the words scrolling at the bottom of the screen. Like during the news..
  19. Sunglasses help, unbusy times of the day, using a scooter if available or one of those walkers with a seat. All stores do the same thing to me even if its a small drug store...and driving I think its the big surrounding with constant movement, something with sensory perception.Some type of anti-anxiety med, sedative even natural calming teas may help?? If ok with your docs. Goodluck been dealing with this for many years.
  20. Thanks for replies, had tooth out yesterday still recovering!!!! Didn't get blood tests Monday thought it would be to much to go through, so I will take on that probably next Monday. I can't believe I finally got this nasty tooth out I delayed it for 4 years I was so terrified of the local ( the medication phobia) but I feel so proud I will overcome these fears! Keep yall posted on the sleep test, and blood work:) I will look into everything you gals have mentioned;) Have a good day
  21. Hello All, Been alittle while since posting, been doing alot better since hysterectomy back in March:) But a few weeks after I developed random sporadic joint pains and the fatigue thats been going strong for almost 5 years now.... About 4 1/2 years ago I tested positive for the lupus anticoagulant (at my sickest point) but at the repeat it was negative so I left that avenue alone. But when I had a follow-up after surgery my doctor suggested doing back to the rheumy to get re-evaluated so I have about 10 blood tests to take tomorrow. A abscessed tooth removed Tuesday. And a sleep study Friday
  22. Hello, I had a complete hyster keeping one ovary March of this year, alot of my POTS symptoms have improved. I had the hyster due to a (what appeared to be solid mass on my ovary) once in surgery found out it was endo but prior to my surgery I discussed with the doctor to just remove all try to save one ovary because my monthly cycles were so severe with fatigue and dizziness general weakness ( not anemic) I was completely drained every month and it seemed my body was just giving up. Since surgery I only had headaches the first few months during cycle times no other major problems hormone wise
  23. I have frequent chest pains, flushing, and have had all tests besides an angiogram.,supposedly everythings okay?...Good luck with your test and keep us posted.
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