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tinkerbella

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Everything posted by tinkerbella

  1. I was talking about wellbuition bothering me. Then I mentioned ssri's and what they did to me. I went looking for the post and link and it wasn't saved in my bookmarks : ( Sorry ) : I do think it's interesting how certin meds Agitate our nervous system. I refuse to keep taking meds that an already confused Autonomic system can't tolerate. I'm thankful that I finally have a team of doctors that see this now.
  2. I can't take any of those meds. My doc has a big alert in my chart. They make me all wired up, almost like I'm emotionally on roller coaster, then nightmares start with vivid dreams. I won't take them ever and it needs to be known incase I can't speak for myself. Now I might be wrong, but Issie, I think you posted a link on Mast cells disorder and meds not to take if you have it. I was reading it around 3 am and I thought that ssri's was on there. I Thought for me at least, Well that finally makes sense. Anyway, check that link out if you haves at cell also. I hope you feel better soon. I wish there were no side effects. I don't take many meds that could help because of all the side effects. : ( HUGS
  3. I wish you the best. I can't tolerate any BB's. They all give me Vivid Nightmares, that my cardio agrees are unacceptable. For the heart rate Clonidine and Mestion can be used when BB's can't be used.
  4. Anyone have their nose itch like crazy when you go out to eat? Nothing really stops it... by the time my topical cream and antihistamine have kicked in dinner is over and my nose is red like a clown *<(:oD)"
  5. Rachel, What ever happened about this Medicare issue? This makes me sick! This SHOULD NOT be a problem in this country! What can do about this problem? I hope you got this all straightened out. You didn't need this added stress. HUGS
  6. I'm so sorry for all you are going through. Try to stay strong, many of us have been right where you are now. Arm yourself up with as much knowledge as you can and proceed forward. Answers will come, they just don't come fast enough for us. ((((Big Hugs))))
  7. I saw they sell chili pads and wish I could afford one. They heat for the winter and cool For the summer. I think it is part of our dysregulation of body temperature. : ( I need to get lucky and win the lottery : )
  8. I'm freezing cold always!!!! Even colder infusing these cold fluids. Burrrr ~ wear gloves, socks, scarfs, and heavy sweaters to bed. : )
  9. My doc said no, but I noticed it does. My body couldn't tolerate Florinef either. I had to take it laying down too. Thanks for the info Alex .
  10. Maybe it's just me, but I had thought it raised my BP as well as lower the HR. I thought this illness was named POTS because of where this med kept me...on the pot. My doc laughed when I shyly told him. Blush, Blush. : )
  11. I have a dog who has a neuro disorder as well. He is very good company for me and usually right on top of my feet keeping them warm... : )
  12. I take 60 mg three times a day... It has taken the elephant off my chest feeling. My doctor finds that interesting, the elephant that is. I already have severe IBS. It doesn't help my GI issues, but I don't have many choices. I do have the option that If I'm going out I can chose to wait and take the does later if it will leave me running to the bathroom. This is something new we are trying. : )
  13. Oh my I itch like crazy!!!!! Insurance just cut my allergy meds that I was taking twice a day. Grrrr, I also take a form of gastrocrom in my lotion now, as it was making me swell by mouth. H2 blockers, stomach meds, and mast cell meds. Funny how all of this is making sense after all these years... Since the cut in insurance my arm has been breaking out in hives... I now have another med, but I also breakthrough itch. Life is a Big Itch. I used to ITCH my ankles raw... My head would itch like crazy at night... I'm going to mention this to the doctor next time. Thanks for bringing it up Rama.
  14. I don't feel much sensitivity wise on my skin, but I wish someone could tell me what the deep bone pain is... Anyone else with sfpn have this. My doc said he has this complaint with one other pt. with a metabolic disorder. Thanks for the link Rich. I hope my head will clear so I can better understand it later on. Brain fog going on bad today...
  15. I'm going to a new GI in the city next week and can't wait... I've developed this new pain / cramping syndrome, or unmasking old pain using ice and heat for pain. Starting under my right breast and the pain turns into right flank pain / cramps. Then radiates around my back on the same side around my bra line. Hurts to breathe also. Also feels like my GI system has slowed down... I keep getting very painful flares. Not long ago it landed in me the hospital and they thought for sure it was my heart. I though it COSTOCHONDRITIS or PLEURSEY after reading more about the pain.
  16. I've had several 24 hour BP cuffs to let the doc know that my BP is dropping too low in the night. When it does I wake heart bounding usually hungry. I used to get out of bed and get into trouble. I now keep salt drinks and food by my bed. Even though I'm on an iv I still drop low. My BP is very plastic. Once stable, I use an app to meditadiate and put me right back to sleep again. It's a free silva mind app. It has a tapping beat in short one I use that puts me right to sleep. I also use calcium and drink water when I wake. I feel like it lulls me back to sleep also. Sweet Dreams Everyone ~
  17. Thank you for posting! : ) just what I needed and the price is right.
  18. Feel terrible . I saw something on tv the other day that I thought hmmm, maybe that would be fun to try. It was sling yoga. I was a fitness instructor years ago, but my heart kept feeling like it was going to pound right put of my chest. Along with I thought I was going to pass put all the time. It was horrible. I had to down several bottles of water just to breathe and try to stand. I often taught from the floor, pretending I was watching the form of everyone in the class just so I could catch my breath. Now going over the stairs is a workout for me.
  19. Will you get IVIG? My doc told me that is what I could get. Also, have they built up your iron stores yet? They did that first to try to make my heart work better.
  20. Very interesting ~ I'll have to follow your posts. I wish you the best! I think more and more of us are going to show up with this.
  21. My doc is calling the lab at MGH and wants me to go back : ( for more Rich. Did you get any answers yet?
  22. I love Dr Hohler. She is wonderful for Neuro : ) I have given her name to many people.
  23. Still L@@king for the right PC for me. Would love one in metro west, ma. But will take any names in Boston, Ma , Newton, Ma : ) I would even start a list Of Ma PC docs that are POTS friendly if people want to let me know. Thanks.
  24. I just got tested. I'm a bit overwhelmed right now. I just got iron infusions and I think it may have flared my mast cell symptoms. Then they only took one biopsy when the doc wanted at least 2 to 3 taken. I'm starting to get very tired of being poked and prodded. I know we all just want to feel better right now, so we can start enjoying life. May we all find some answers soon that will give us a better quality of life. Hugs to all ~
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