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About Kellysavedbygrace

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    Advanced Member
  • Birthday 07/02/1969

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    Tampa Bay, Florida

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  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. 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
  3. 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
  4. Ditto Rich! I was just thinking about ways we could improvise and wonder if the O2 monitors they use in NICU could be adapted for us to look at some degree of O2 levels in the head. (Even if we could it really wouldn't be quite the same as what you are thinking but may give a different measure than our peripheral O2 which would be clinical evidence to dig deeper.)
  5. Here's the link: Check out this video on YouTube:
  6. I bet it is. Thanks for the link. Palm beach is on the East coast and I'm on the West coast of FL but I bet I can find someone. In the fall of 2011 my hubby called Dr. Rowe, actually got him on the phone and discussed my case with him. Unfortunately he only treats pediatric patients so he recommended I see Nancy Klimas in Miami (which I haven't done yet but haven't ruled out either.). They both specialize in CFS. Btw- Dr. Rowe has a great you tube video about CFS and Orthostatic Intolerance.
  7. Dr. Peter Rowe at Johns Hopkins recommended to my husband that I try CS therapy. I've had many massages and always ask about it but the people I've met so far don't really know how to do it. I've thought about looking into finding someone locally and have heard from a therapist in Idaho that there is a massage school that specializes in this form of therapy somewhere here in FL. In the meantime, when I am crashing hard sometimes my hubby or daughter will do a massage of my neck, spine and sacral area that puts slow, firm, non-moving pressure around the sides of my spinal cord. It really see
  8. I have wondered why you are such a proponent of licorice. I have tried it in many forms, tea, dry root herb, and of course candy. I have not noticed any immediate improvements or downsides like you have and wonder have I just been missing them? The clinical evidence you shared makes me want to analyze more specifically. I have elevated Prostaglandin D2 and cannot tolerate aspirin so to learn that licorice might help is very interesting. Good thing I like the taste of it. Sounds like you prefer the tea. (and you may have answered this in a previous post but....) which forms/brands do you o
  9. At Cleveland Clinic they recommended I try Mestinon instead of Midodrine. (I couldn't tolerate it.) You may want to try a Midodrine break and try Mestinon in it's place for a while. Our bodies easily adapt and switching meds ina similar class can be helpful for giving your body a break. Btw- you may already know but Mestinon (Pyridostigmine) is a cholinesterase inhibitor so it blocks the enzyme that is a catalyst for acytecholine, a key player in neurotransmission. Used mostly in myasthenia Gravis patients. It does help maintain BP without elevating it in a supine position.
  10. He does not do testing. For diagnostics go to a major med Ctr such as Vanderbilt, Mayo, MN or Cleveland Clinic, OH. He is Outstanding in treatment. I took my recommendations from CC and Vanderbilt to Randy for review. I follow w him every 3-6 MOS or so.
  11. Top helpful treatments (other than exercise and IV saline) for me: -Adderall - high dose antihistamines. (Loratidine 20-40mg, and Famotidine 80-120 mg) - massage of neck, back and feet when I'm crashing helps to stimulate parasympathetic system. - high salt diet and high caffeine diet
  12. I've never tried anything but saline IV. I usually get 2 liters over a 2-3 HR period. It usually takes them 15-90 mins to get the IV going because of difficult veins and it really helps me for about 24 hrs. I use it as a bailout when I'm crashing hard or in preparation for a big event or plane flight. I can drink till the cows come home and still not have enough blood flow. It seems the problem for me is at the cellular level so the extra two liters quick will pick me up. It takes about 4 hrs after infusion to feel full effect. Within 36 hrs it is all gone. My primary doc has a researc
  13. Busy patterns effect me too! Hotel hallways seem to be the worst.
  14. YES! That's it! I've tried to describe this before but have struggled. But as you've said it is almost as if it is dim or dark. I don't think it is a true vision problem but more of a vision processing problem (neurological.). It is as if I can't see normally, even though I can see. It's like I am walking outside and I can see only the thugs I need to see- not that the others things like trees, colds, etc. Are not there but it as if my mind doesn't register them. It as if the whole world is dark or dim and I only see the things that are relevant to me functioning. It is the very minimum
  15. Kitt, Like Issie, I believe the norepinepherine is the key to Dx hyper pots. I had to ask for a serum Catecholemine on the TTT at Cleveland Clinic. They did it just like Hyperpots suggested. At that point my supine NE was just a couple of hundred and I didn't make it upright long enough to get to 10 mins where they like to draw it again. At about 8 mins (when my TTT ended) I was just shy of the 800. Last mo however, during a lab draw for mast cell testing I had a NE of 650+ taken in an almost supine position. I say this to point out that these levels can fluctuate a lot - thus the need o
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