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Kellysavedbygrace

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About Kellysavedbygrace

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  • Birthday 07/02/1969

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    Female
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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. 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 how I've learned to manage them: - if the bug man sprays for ants and roaches in the living room (4 rooms away from my bedroom where I am) I can within seconds taste a faint bit of the chemical in my mouth. Since I live in Florida, where bugs are a problem, he no longer sprays the inside of the house. He sprays the outside perimeter and I use borax and bay leaves inside. - when my girls paint their finger nails or remove polish, in their room 5 rooms away I have difficulty breathing. they have to do it outside. They throw away the cotton or paper towels they used for this it has to go in the outside trash. - when I go to the beauty parlor to get my hair colored, my hair dresser uses the sensitive skin products but I wear a Hepa filter mask because the chemicals/smells in the salon will cause very erratic hemodynamics. I've had my BP drop to 80/50 for 5 hrs afterwards, I've had my HR jump into the 150-180 range and have had to lie down on their back floor, or had my HR drop really low into 50's w low BP. I make sure to schedule my Appts at the end of the day, take extra antihistamines, drink lots of water and avoid exercise anytime earlier in the day. - I can no longer tolerate perfume, cologne, fragranced beauty products, fragrance candles, oil burners, etc. I now use all natural beauty products and as long as the smell is all natural and not too strong I can usually tolerate it. If I am out and someone near me is wearing a strong fragrance, I have a cloth in my purse that helps filter the smell that I can use as needed. The same applies for cleaning products. I cannot tolerate chlorine or ammonia based products so we use vinegar, baking soda, lemons, tea tree oil and all natural soap without sulfates. I suspect most of my hypersensitivities are mast cell activation related as this is a common problem for folks who have MCAS but I don't know for sure. Feel free to PM me if you want to discuss more.
  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 that is a good sign. Also, there is an article you can google for dental precautions w/ POTS pts on Pub Med that you could give to your dentist in advance.
  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 colitis where the gut lining is dying, bleeding and actually leaking out its contents filled with bacteria into the interstitum (which can be life threatening) - On the other end you have a patient with irritable bowel syndrome reporting various systemic symptoms that could be attributed to malabsorbtion but there is little or no clinical evidence to prove it. The challenge for the doctor is- can he or she find objective evidence of "gut permeability" that can be replicated and proven? And if not, does that necessarily mean "gut permeability" doesn't exist? We don't really know, but we can make some educated guesses. If chemical mediators located near the smooth muscle walls of the vascular system can make our blood vessels more permeable, then it is possible that a similar neuro/chemical reaction may be occurring in lining of the gut in cases without current clinical evidence. Since the gut is much more complex and difficult to study than the blood vessels with many more layers: mucosal, sub mucosal, visceral, smooth muscle wall, etc. it is also much more complex to study. For instance, Dr. Hamilton mentioned he was studying proliferation of the mast cells and various proteases in MCAS patients. At that point, he had found no evidence of proliferation of mast cells in the inner mucosal lining. He went on to point out that just because he hadn't found proliferation of mast cells in this study, doesn't rule out that there isn't proliferation in another layer, such as the smooth muscle wall lining, where the nerve cells and mast cells are abundant. We do know that mast cells which can cause all sorts of systemic havoc and have been seen to degranulate close to the synapse of the nerve cells. So if there is proliferation and or activation going on in the smooth muscle layer it may greatly effect the permeability of the gut. Yet at this point he is only studying the inner mucosal layer. I suspect with the growing number of chronic conditions which involve GI issues of varying nature we will continue to see more research on the pathophysiology of "gut permeability".
  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 Dysautonomia which is a connection few researchers are studying. Hope this finds you in a good moment. Blessings!
  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 and most notable is that these were not just MCAS patients, these were patients with Indolent Systemic Mastocytosis, Smoldering SM AND Cutaneous Mastocytosis. No one is talking about this, to my knowledge. I don't know of any study really digging into this. The only one that comes close is the one done a while back at Vanderbilt by Shibao, et al. (where they just used a Methylhistamine test to isolate MCA- which at that time may have been all that they had.) So I come home from the conference with this obvious awareness gnawing at me. There has got to be a connection between Mast Cell issues and dysfunction of the ANS. Had you been there, you would have seen it as plain as day just in looking at this wide cohort of patients with various either proliferative or overactive mast cell abnormalities. And, so I'm discussing this with my Autonomic doc and he is thinking there is probably some ANS function that causes some mast cell abnormality. So I text one of my new physician friends, Dr. Theo Theoharides, and I ask him if there is any way the ANS could cause either mast cell degranulation and/or exocytosis. He texts back, "Aceytecholine can.". So I start digging and I find this paper, which makes me think of you. Of course because I know how much you love breathing and how much you enjoy reading nail biting edge of your seat medical research. Would love your thoughts. Feel free to PM me back. I posted this on your big breathing poll thread because I thought there might be others with breathing issues or Mast Cell knowledge that might want to weigh in. http://www.atsjournals.org/doi/full/10.1164/ajrccm.156.2.96-12079
  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 scaling machine. There are more mast cells located in the areas of our body which come into contact with the environment such as the gut, eyes, nose, mouth, etc. The dental region, especially gums and roots of teeth, when irritated may release histamine which could be part of your reaction. This does not necessarily mean you have abnormal mast cell activity. If you don't suspect abnormal mast cell activity you could probably benefit from a small dose of antihistamines such as taking a single dose of benedryl or a dose of Claritin and Pepcid.
  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 such as PAF, MSA and Familial Dysautonomia.) I'm wondering if you received the actual BP and HR Variability data? Also, I was surprised that at CC once I had a "normal" HRV test (even though I likely had a similar exaggerated overshoot) the additional testing such as the cold pressor test and the hand grip tests were not required- so I didn't get them there. If you didn't get the raw data you might want to ask for it. It seems those of us w/ hyperadrenergic cases consistently have a notable BP overshoot in the Valsalva but I haven't seen research material showing that it is a consistent measure. (I just remember Dr. Biaggioni coming in my room, along with a resident, and pointing out to him how exaggerated my Phase 4 overshoot was.)
  13. Well done! Thank you so much for sharing your wisdom and insights with us.
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