Jump to content


  • Content Count

  • Joined

  • Last visited

Community Reputation

0 Neutral

About Kellysavedbygrace

  • Rank
    Advanced Member
  • Birthday 07/02/1969

Profile Information

  • Gender
  • Location
    Tampa Bay, Florida

Recent Profile Visitors

1,982 profile views
  1. Hi.  Can you tell me more about your experience with craniosacral therapy?

    The last time I did it for 2 sessions, it made me worse. 

    I think that the therapist caused my vagus nerve to be impinged and I have been dizzy every since.

    So it made my dysautonomia worse.

    I am wondering if I should see another doctor who does it to undo what the last one did.

  2. Ditto. Welcome Carrie! And Rachel, I am praying that this year is filled with rest and healing for you. Thank you for your faithful servant leadership.
  3. Me too. "Hypersensitivity" to the world around me (including smells) but especially light, sound, touch, motion, is one of my top 4 "living a normal life" problems. Interestingly enough, smell was the last one to develop. After onset I had more of a problem with light sound, touch, proprioception (where I am in relation to the world around me) but soon I started noticing the hypersensitivities to smells and tastes. And while I'm hypersensitive to all smells to some degree it is the artificial or chemical smells that make me symptomatic. Here are some specific smell problems I've had and
  4. May want to try preventing a bad reaction with an H1 antihistamine (such as benedryl) that will prevent additional inflammation and/or reactions to the local anesthetic. Histamine release is associated with most any invasive procedure. If you struggle with anxiety might also take a half a dose of Xanax or similar med. I like the idea mentioned above of bringing your HR monitor with you. If you struggle with hypotension then may want to also watch BP. Know lots of POTS pts who struggle with dental issues for various reasons and other who do not. If you have tolerated Epinepherine before
  5. Yogini, I am I right in thinking you are referring to the term "leaky gut"? I have been skeptical when others used the term, "leaky gut.". So during one of my interviews with Dr. Hamilton I asked him about this term "leaky gut" and specifically if it is "real diagnosis." He said, "most inflammatory GI issues fall somewhere on the spectrum of gut permeability". I think is a great way to think about this issue and consider it light of its severity. -On one end of the spectrum you have something like necrotic tissue created by a severe case of Inflammatory bowel disease such as ulcerative c
  6. Hi Spinner! Thanks for sharing this link. It is interesting that one of the symptomatic signs of Mast Cell Disease progression is organopathy - commonly seen as abnormal functioning and/or failure of the liver and the spleen. In the coming DINET newsletter I have submitted an article, "GI Symptoms, MCAS and Dysautonomia: Part 1- Signs, Symptoms and how Dr.'s diagnose" which has been edited by Dr. MJ Hamilton from Harvard and Brigham & Women's Center for Excellence in Mastocytosis. Although it doesn't address the role of liver function- it does connect gut permeability to MCAS and Dy
  7. Medic girl, I ditto E.S.- you courage and willingness to share about your journey inspires me. It is so easy for us to get stuck in that 'Woe is me' mentality. Not only have you not done that but have shared great information with many of us. Thank you.
  8. Hi Rich. It's been a while since I've been on the forum. Hope this finds you in a good moment. Went to the Mastocytosis conference in Greenville recently and was surprised to find a large majority of patients, well over 50%, had POTS, NCS or OH. I was surprised because I have heard all along that real MCA in POTS is very rare. In fact, the young lady who did that interview w Dr. Grubb about Hyperadrenergic POTS and MCA was there. By the end of the conference I had patients asking me more about Dysautonomia because they didn't know that NCS was a form of Dysautonomia. What is interesting
  9. As you probably already know problems with dental procedures are common in Dysautonomia. We're you anxious about having the procedure done? If so, you may want to ask your doctor about an appropriate benzodiazepine such as Xanax to help relax the nervous system. For many of us hypersensitivities to sounds, vibrations and pain are also problematic. This has been an issue for me. I have found it helpful to take a double dose of my regular antihistamines plus a benedryl as I have MCAS. I do this prophylacticlly and now don't have a problem getting my teeth cleaned every 4 mos with a similar
  10. I cannot tolerate many of the drugs listed above (including all pain meds, nasaids, steroids and narcotics) and while this is by no means a cure all, a dye free benedryl, will take my migraine of a 9 down to a 7.
  11. Thanks for sharing Kitt. I'm in Sedona, AZ today sending prayers your way from across the country!
  12. I had this done at CC too and had "normal" HRV results. I didn't seem to get as much data as you in my report but it's been a while so I'd have to go back. Comparatively while at Vanderbilt I had a similar HRV and learned that while my ANS dysfunction is Postural I learned that I had a nearly 90 pt overshoot in my BP In phase 4 of the Valsalva which is a marked evidence for a hyperadrenergic reaction. (a normal test looks for a 10-15 Pt increase- below that would be "abnormal" meaning the ANS is not properly compensating on it's own- typical results in more degenerative cases of Dysautonomia
  13. Well done! Thank you so much for sharing your wisdom and insights with us.
  • Create New...