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LilySnick12

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  1. hi all. it's been awhile since i've posted (let alone been on Dinet what with classes and not feeling great ) but I recently came across some interesting links that I think should be shared. Below I will post the links. Mystery Diagnosis - POTS episode. (When you're finished watching part 1 you will have to look in the box to the right and select part 2. Then after part 2 there is a part 3.) http://www.youtube.com/watch?v=NN3PB6N6oGY This one was interesting. I'm not sure where it came from but it's supposed to be an "awareness and hope project". It had some really good information and was kinda interesting. I'm sure most of you have the last link that I'm going to post- but just in case I'm gonna post it. It seems to be the best place for information on POTS and dysautonomia (that I've found). http://www.potsplace.com/
  2. So far so good. The preliminary reading on the MRI came back okay. I won't know details until Wednesday at the earliest. But taking this all as a good sign so far. Still not sure what's causing the seizures or how I got the hypodensity (low density area or light spot in the brain) but maybe time will tell if not the next few drs appointments. Any ideas on causes of focal absent seizures or hypodensity is welcome. Feel free to PM me. Thanks everyone.
  3. Sunfish, Our thoughts and prayers are with you. Asking our great Physician and healer to guide your earthly doctors. May you be surrounded and uplifted by love, hope and faith and feel HIS comfort. Thank you so much for your honesty and sharing your heart with us. You have touched many lives! Your courage and conviction is evident in all you do. Your love and compassion will leave a lasting legacy on many hearts. Again our best wishes for a speedy hospital stay and prays for a rapid recovery.
  4. I've been having severe abdominal pain. So severe that I nearly pass out. I went to ER and they did x-rays and can't find anything. (Abdominal migraine was mentioned as a possibility) I've had my gallbladder & appendix out already. Last week I had a sinus infection with the headache becoming more migraine in nature. Now I am having what they are calling FOCAL SEIZURES. I lost track of time and couldn't complete a task like brushing my teeth....Id just zone out. The headache is better, but I had another "seizure" today. My Dr sent me to the ER for a CT scan of my head. The ER Dr said it showed a hypodensity but wouldn't (or couldn't?) explain what that meant. She just said they didn't know and I would be scheduled for an MRI by my Dr. Has anyone else experienced this? Any idea what it is? All I could find on the internet is that it means a "less than normal" denisity and that it could be a tumor, bleed or result of a head injury. Tomorrow and answers from my family Dr seems so long to wait! KT
  5. Tearose, I believe that God allows people to come into our lives for a reason, a season or for a lifetime. Sometimes they come into our life for a short time. Maybe we need them, or maybe they need us. Than for no reason or through no fault of our own they leave. Sometimes we may even have to make the choice to let go. I had a "well" friend who was blessed with good health for herself and her family and didn't get my daughter's POTS. She asked me what my daughter had done that was so bad that God was punishing her in this way! My reply: absolutely nothing! I don't believe God spends the misery wheel and randomly chooses a victim or punishes us like that. I do believe God allows bad things to happen, even to good people. I know that he gives us the strength to endure even the most difficult events in our life and uses them for our good and His glory. "For I know the plans I have for you, says the Lord. They are plans for good and not for disaster, to give you a future and a hope." Jeremiah 29:11 Your illness gives you a greater compassion for the suffering of others. You have probably offered advise, and given support or encouragement to another. Maybe our health information will lead the way for research to find a future cure. Sometimes we don't have any idea of the impact we've made on another persons life. Long story short.....don't feel guilty about letting go! It's not cruel or mean: sometimes it's just plain self-preservation. If they are draining your emotional & physical energy it's harmful to your health. Praying God will send you a true friend to cry with, share with, pray with and just pour your heart out to without fear of being seen as weak. A true friend loves you inspite of what illness you have or who you really are. I'm always telling my daughter: POTS IS WHAT YOU HAVE.... NOT WHO YOU ARE! So you can define what it is or let it define who you are and who you become. The choice is always yours, choose wisely! God bless you! Paula
  6. From Lilysnick12's mom Regarding the Mild Hyperbaric Therapy. I have discussed this with our PCP and she is reserching it too. So far she thinks it's worth a try. I'm still unsure. I went on line and found this website www.hypertc.com. which explains its usage. I have also sent inquires to several of the Association and sites listed to see if they had study info specific to pots. I'll keep you informed if I can get the study info. At this point we've not made a decision to go ahead and I'm not sure what we'll do. The chiropractor is a friend of my sister's and we do know him. I'm going to talk to him to see if his training was through the local hospital or the company it was purchased through. He has offered to accept whatever payment the insurance provides or he will do it free of charge if our inurance won't cover it. I'm planning to contact her Dr at Mayo to see what they advise too. Thanks for your input.
  7. I can't take the iron supplements orally ....I get bad stomach pains & the dirrehrea too. My Dr gives me a b-12/b-complex mixed injection weekly. (there's also another component they can add to it to help with weight loss which my mom gets to help her thyroid weight gain and her fatigue) This has been the best energy boost for me. Also she stopped my periods so I could get my iron built back up. I did try the Femiron which was suggested by my pharmacist....it was better that the pure iron supplements but I still couldn't tolerate it.
  8. Mary, You'll find the best friends and support right here! People don't understand and often it's our friends and family that are the worst offenders. My daughter has referred to herself as the invisable teenager, because your friends often forget about you. My 17 year old daughter has POTS.....her dad's still in denial that she is sick. When we were at Mayo Clinic in 2005 they kept repeating, Sir you do understand this is real and that she is sick don't you? Four 4 years dealing with the school and staff that didn't believe us. The best advise is to keep your explanations very simple....my blood pressure doesn't regulate itself. You'll learn that you need to put your energy into taking care of you and not be so concerned about what others think! You may not always be able to clearly define your illness to others, but you can choose how you let the illness define you! In my daughter I see a greater maturity, compassion for others, stronger faith, preserverance and a great strength of character beyond her years. Wishing you the best, Paula
  9. Our thoughts and prayers are with you! Sorry you are having such a difficult time with Doctors. Been there, done that, shed the tears. My daughter is 17 and had been ill since she was 9. We went to Mayo Clinic in 2005. Just by reviewing her medical files they already knew she had POTS. We went there and they ran a few additional tests which all supported that. What a relief to know it's real and you're not crazy. We had seen many doctors locally and where told it was because she was a menistrating female or it was anxiety, common in the teen years. I even told a Doctor that if he gave them that line I'd slap him! U of M Hospital Ann Arbor, MI Dcotrs has been wonderful. Also, we found a great PCP who is willing to try alternate treatments and is willing to learn. We take her POTS info and she does review and research it. They key is our Doctor cares and she listens! Unfornately today with the HMO insurance we often get take a number, cookie cutter care. We are doing massage therapy to help with muscle pain, and B-12/B-complex weekly injections to help with the fatigue. Having a support group to vent also helps!
  10. According to my daughter's Doctors at Mayo Clinic POTS and CFS are two different diagnosis. My daughter does have both Pots and CFS. The symptons are similar in the fatigue and tireness. She does take naps whenever possible. The key for her is to pace herself. If she is overly active and pushes herself, she'll be down for days after. She has been having success with massage therapy and is also getting weekly injections of b-12, b complex, which does help to boost her energy level. She also is monitored for annemia. She pushes fluids mostly water, as gatorade and the additional salt intake doesn't appear to be much help for her.
  11. A local chiropractic doctor sent us information that he is using a hyperbaric chamber to treat two of his patients who appear to have pots. He wants to work with me. He feels that the chamber use will help ease a lot of my symptons. It is being used on patients with Chronic Fatigue, Pots, add/adhd, etc. It's suppose to flush toxins from the body and send more oxygen throughout the body, which should help the pain. ( especially the leg pains from the blood pooling in the legs, etc.) Has anyone else tried this? Any there any known risks involved? I'm interesting in learning more. Please advise..We're thinking of trying it. (My daughter is 17 and has been sick since she was 9, she was diagnosed with POTS in 2005) Paula
  12. Angelika- I have a Chiari I Malformation and my advice to you would be to go to a neurologist and a neurosurgeon. Since it's not a Chiari II it may not be anything that will effect you. For example: all that came out of my Chiari I was migranes and headaches. Nothing big. Many ppl with Chiari I don't have any problems and sometimes you can grow out of it (like me) or its small enough that it won't bother you or make any difference at all. Feel free to PM me with any questions you may have (sry in advance if it takes me awhile to reply, as I'm not on much). Hope you feel better!
  13. I'm so sorry about your son. I understand what he's going through (as I'm sure most of the people here can also). I've had POTS since I was 8 or 9 (I'm now 17) and have had to go through (and still am going through) problems with the school, doctors and people who just generally don't understand and have no concept of how hard it is to be so young and have such problems. If you need to talk or have questions, please feel free to send me a message (or you can send it to my mom at this account also) and we'll do whatever we can to help. Good luck!
  14. For those of you with POTS who can't work, attend school, etc. regularly- how do you cope with the boredom? I know that for me, its hard to stay occupied and at the same time is hard to have the energy to do something entertaining. Books are always good, and there's tv and the internet; but what "boredom busters" do you use to cope???
  15. I am 17 and have had POTS since I was in 3rd grade. I was told at Mayo Clinic that it is possible that I have an adolecent version that I may grow out of by the time I'm 25, or I may have it forever. There isn't a definate cause, but we think I got it from having mono (epstein barr) so many times (yes, I've heard you can only get it once, but I've had it 3 times). I'm not that tall (5' 2") and average build, so not overly tiny. I haven't grown in a few years. Any ideas??? Thanks!
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