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About stephanieogan

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  • Birthday 09/19/1970

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    Overland Park Kansas
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    I used to work about 60 hours a week as a chemist. I barely had time to do anything but wrok, including spending quality time with my children. I was personally driven to succeed in my career. A few years ago I learned what life was really about.<br />So now I spend lots of quality time with my kids, enjoy the time I have with my husband, volunteer for scouts and PTA when I can, and have a great dog that takes care of me.

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  1. OK I was first diagnosed with Restless Leg Syndrome and sleep apnea. When they did follow up sleep apnea studies they recorded the full body jerking and gave me a diagnosis for that. It is called PLMD. Period Limb Movement Disorder. There are different medications that can help. Good Luck.
  2. I have tried just about every combination of "sleep aids" but I can continue to stay awake all night. Even with the ambien. Last fall I had a doctor prescribe melatonin for me. There are actual scientific reasons that our bodies are not producing enough melatonin, it goes right along side the seratonin. It seems that many of us are taking some sort of antidepressant along with our other meds. Anyway I started taking the melatonin and I found that it made a HUGE difference. I can sleep for about 6 hours at night with just the melatonin. I started off taking 9mg per night, but now I am up to 12mg per night. You can buy melatonin over the counter at most drug stores for about $7 a bottle. I get mine at Walgreens, but it is in many other places as well. You might want to give it a try, or ask your doctor about it. I can not believe how much many I spent on prescriptions that made me feel hung over the next day and how many years I spent with barely any sleep. Good Luck!
  3. Maxine I am so sorry for your loss. I truly believe one of the hardest things to go through is when the loss of your mom. Mine has been gone for 4 years now and life has been so different. My only words to pass on to you is to remember the spark that she had and keep her dear in your heart. Again I am sorry to hear about your mom. I will keep your family in my thoughts. Stevie
  4. I would like to find out how many of us there are in the KC area. Maybe we could get together and have a support group where we meet face to face. I met a wonderful lady in Cleveland that said talking to people face to face can make a difference when times are tough. Anyone interested?
  5. I take 50mg 4x per day, and mine is not time release. I wish that it was. If I miss one my body starts aching.. Really only the gabapentin has put a dent in my headaches long term. Good luck
  6. I get that too. But mine occurs when I am trying to do very calm basic things like getting dressed daily. I have to sit infront of a fan to cool off every few minutes. I feel like by the time I am dressed for the day I need to take another shower because I sweat sooo much. I have not found anything that helps this. Not even cold showers!
  7. I can completely understand how you are feeling. I was in the hospital with an intense headache for 4 days. I needed the dark. I wanted to sleep. I wanted to cry but it only made things worse. At first they gave me morphine but said that all I really needed was tylenol. The doctors sent me home and said it was a sinus infection. They were so wrong. It seemed like the headaches would be the end of me. This was before I was diagnosed with POTS. My neurologist put me on indocin 4 times a day with an acid reducer (prilosec) since I already had stomach problems. The indocin worked on its own for about a week. Just long enough for me to travel home. Thanks to wonderful people on this website I heard about gabapentin and discussed that with my EP. Now I am on gabapentin 900mg daily along with the indocin and my head aches are gone along with most of my body pain. I can not forget to take it or WOW they are back bad. Good Luck. I hope that you can find a combination that works for you..
  8. Hi Amby I was diagnosed with POTS just this last fall. However it took about 2 years to finally get diagnosed. I have had a total of 4 tilt tests. My very first test I passed out within minutes of being tilted. It seemed like every test was different. For some tests I was suppose to take my meds, and others they told me not to. It seems like different doctors interpret the findings differently. I was getting to the point that if I had to take another tilt table test, I was going to record all the data myself and refuse to take anymore. The best overall testing was finally done in September. My doctor for this test confirmed the POTS diagnosis, and even appologized for all the other doctors that I had seen. My other doctors had misinterpretted the data, because they were lacking the understanding of POTS..... Long story short, stick to your gut feelings. I was told my problems were "all in my head", and I knew that those doctors were wrong. Luckily I stuck with it. It gets really hard, and it is easy to loose faith in the medical professionals. Howver, not every doctor is clueless. Good Luck and keep your chin up!!
  9. I was treated for sleep apnea for years, but still had huge problems going to sleep, staying asleep, and sometimes getting up. My doctors have put me on everything. I even took ambien and could stay awake all night long. When I went to Cleveland clinic they retested my baseline sleep and found that I do not have sleep apnea. They even had me stay for multiple nights to re-check the information. No sleep apnea was the result. However the doctor there said that it is easily misdiagnosed on many people with orthostatic intolerances. . . imagine that. The best thing he did for my sleep was to take me off of everything related to helping me sleep and started me on 12mg of melatonin. Yep, melatonin, bought over the counter. It has been a life saver. Sleep was so awful and so little, I thought I would go crazy. Within 30 minutes of taking the melatonin I am sleepy and sleep through the night. It is amazing... hope this helps someone - make sure it is all natural (The bottles say to take 1 tablet of 3m per night, but that is not enough for people with real sleep issues.) Stevie
  10. Hey guys.... not all of us are size M/L, especially now that I have this disease. Can we get these T-shirts ordered in larger sizes? Like 2x or 3x? Pretty Please? I have a group that would love to wear these shirt to support awareness, but these don't fit...
  11. Thank you all for your input. I saw my doctor in town on Friday, and she is open to tryng some of the suggestions from all of you. I appreciate you all taking the time to let me know. . . THANKS
  12. Thank you for the information. I hope all goes well with Amy.
  13. I would also go to see an EP. The EPs are the only doctors that I have seen that even begin to understand POTS. Good Luck and don't let the doctors get you down.
  14. I am new to the forum and saw the mention of these T-shirts. Have I missed their sale? I would love to buy some for my family and friends. Well the ones that understand anyway. . . Please let me know.
  15. Hi! I am recently diagnosed with POTS (cleveland clinic 9/2006) after 2 years of doctors telling me more or less that I was crazy. When I was there the doctor gave me Indocin for my headaches, and it seemed to help. I have been home a couple of weeks now and the headaches have come back non stop. The neurologist from Cleveland wants to change the Indocin to Celebrex. However the cariologist from Cleveland said not to take Celebrex. So I have a new prescription with fear to try it, due to all of the possible side effects. My cariologist here at home does not want me to be on anything narcotic. I feel like I am stuck with a permanent headache that is keeping me from doing anything on top of all the regular POTS symptoms that I have. Has anyone come across something that works? I would love to get an idea of something (anything) that might help...
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