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Chele

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About Chele

  • Birthday 12/13/1964

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  • Gender
    Female
  • Location
    Near Atlanta Georgia
  • Interests
    Loving the Lord, my husband, and my kids, family and friends. Spending time with my kitties (4). Spending time on my laptop.

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  1. Yes, my sense of hearing is very sensitive to noises. My sense of smell is such that my husband can't even eat garlic. Once when he had some for lunch while at work, he thought if he brushed his teeth, used some mouth wash, and chewed gum that I wouldn't be able to tell. Well I could tell when he walked in the door. Sure enough I got a migraine and felt nauseated. It is not his clothes, he can take a shower, and I can still smell it (it is like I can smell it through his skin pores. I will smell it on him for two to three days.
  2. I had my TTT done in the fall of 2005 at Emory in Atl. I knew that my heart rate and blood pressure would be monitored at different angles. Upon hearing that explaination I thought well this will be another dead end test. When the technician came out to the waiting area to get me she told me her explaination adding, "Well if we can get you to pass out then we know something is wrong". I'm thinking to myself... pass out no one said anything about passing out. While she was getting the test started I was a real jabber box (that's how I am now when I get a chance to talk one on one with anybody these days). I wasn't given any meds before hand. She told me not to worry that if I do pass out she would just lay me back down and I'd come to again. I wasn't thrilled with the possibility of passing out, so I thought I'd come up with a pretty good strategy. I told myself to stay calm and keep blinking your eyes. The laying down part when smoothly enough. I was then raised to approx. 70 degree angle. There I was trying to stay calm and blinking my eyes, still jabbering away. Then it came time to put a nitro pill under my tongue. Right away I didn't feel good, the tech wanted to know what I was feeling. I felt my heart racing, nauseated,.... Next thing I know is I am lying down again, I'm thinking," ah man, I passed out. I felt like my worst day (like I have described to the doctors, but they'd never seen) times three. At first I could hardly move, when I started to talk my words were extremely slurred, I still couldn't sit up, I had extreme brain fog, etc. The tech said, " There is definitely something neurologically wrong with you for a passing out episode to cause your speech to become so slurred". My husband was able to come back, and I tried sitting up. John ( my husband) asked if we could use a wheel chair to get me back to the car. As we were leaving, John came up with a brilliant idea. On the way to the car we went by my neurologist's office to see if he had a minute to see my condition. Thankfully he was there and took the time to see me. So a test I thought that was going to be a dud turned out to be one that yielded the best look at what I was always trying to describe to my doctors. For the rest of the day I felt bad, and needed to stay in bed. Well sorry to just go on and on ... Hoping and praying your tilt table test goes well, Dana
  3. A couple of years ago I switched to a new b/c pill, because I read in a magazine it safely stops your periods. I haven't had one in over a year. I am glad I did, because of all the symptoms I deal with having POTS and SFN ( small fiber neuropathy) I don't have to deal with PMS or a period. I just turned 45, the b/c pill is Lybrel.
  4. I'm so very sorry for the pain you are feeling, and the way people can so misunderstand you, your life, and the decisions you've made. I've experienced some of this myself. When it goes on for decades the pain goes very deep. I think it is very admirable in all that you're doing to make your life's new normal be the best it can be. Pull closest to whoever and whatever helps you, and put some necessary distance ( whenever possible) to the negative and hurtful things, people, circumstances, etc. If I can be any help as an understanding heart and/or ear e-mail me at goodkittynap@att.net. An understanding friend, Dana
  5. Hello my name is Dana. I live about 30 miles west of Atlanta. I see Dr.Gregory Esper(neurologist) at Emory, and his nurse practitioner Valencia Hawthorne. I was originally sent there the summer of 2005 for a second opinion. My local neurologist had retired, and his replacement referred me to Emory, because my neuropathy symptoms didn't fit into the norm for neuropathy. So after much testing, including a tilt table test, and some autonomic testing done at Vanderbilt, I was given my official diagnosis:POTS secondary to idiopathic small fiber neuropathy in Jan 2007. I still see them two-three times a year.
  6. Dana 44 POTS secondary to idiopathic small fiber neuropathy (SFN) POTS-42;SFN-35 Georgia stroke like in appearance- extreme fatigue including in face(feels like it is melting), mental confusion, loss of balance, dizziness, slurred speech; these at worst times almost always triggered by being in a loud, busy enviroment neuropathic pain all over stongest in abdominal and back areas, dizziness, patchy loss of sensation areas all over body, random sudden intense areas burning and itching, trembling, fatigue, random periodic twitches, constant ringing in ears, heat intolerance, extreme noise sensitivity, nausea, sometimes constipated, need to strain to completely empty bladder, random tingling sensations (like something crawling on me) recently started feeling this on both sides of middle back, recently joint pain, sometimes feel as though running low grade temperature dilantin, no longer take amitriptylene and depakote neurontin, florinef, wellbutrin, vitamin D, fish oil, benefiber, evening primrose oil (supplement), as much as possible avoiding loud and busy enviroments (instead of attending local church watch live streaming services of a like-minded church where my oldest son currently attends), recumbent bike, drink G-2
  7. I have a confirmed Dx of small fiber neuropathy with POTS. It (small fiber neuropathy) was diagnosed through a skin punch biopsy at the ankle, and on the thigh. My neurologist was surprised that the results showed more damage at the thigh area than the ankle. I also do not have diabetes, cause for both (neropathy and POTS) "idiopathic". I have this nerve damage throughout my body, and the pain is very much worse with increased activity. I am longer able to work. I do have to take it easy, and rely on my husband's and kids' (when available) help to do housework, though I much would prefer to do these things myself. I am very grateful for their help.
  8. I've been reading other posts for months, but to chicken and inexperienced to post myself. Also I'm a hunt and peck typist. But this post describes how I am in stores or other loud and busy environments. I am so glad for this forum, and other websites that explain dysautonomia. It definitely helps to know that it is not "all in your head", and that there are others going through similar health problems.
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