Jump to content


  • Posts

  • Joined

  • Last visited

Everything posted by Kellysavedbygrace

  1. 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.
  2. 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.
  3. 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.
  4. 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".
  5. 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!
  6. 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.
  7. 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
  8. 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.
  9. 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.
  10. Thanks for sharing Kitt. I'm in Sedona, AZ today sending prayers your way from across the country!
  11. 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.)
  12. Well done! Thank you so much for sharing your wisdom and insights with us.
  13. Interesting read! We recently found water damage including some mold in our master bathroom. The remodeling and repair was finished today. I wonder how many ofus have had mold exposure and if there might be a connection.
  14. Yes, this has become a problem for me too. I suspect this is my Mast Cell issues because it is common to have increased sensitivities. I have been on and off of at least 20 meds and am increasingly allergic to chemicals, fragrances, etc. I cannot take any pain med w/o a reaction- although sometimes I take them knowing the relief of pain is better than the side effects - usually difficulty breathing and severe flare. Here are the meds I take that help w/o giving me a reaction. Each of us is different so it may need to be trial and error for you. Mestinon Loratidine Famotidine Clonazepam Adderall
  15. Kudos Naomi! Funny. I have been thinking about this very need here locally. In the last 10 days I have had 3 newly Dx POTS patients contact me because they heard I had POTS. - a sixth grade boy in my daughter's school, referred by a mother who knew me - a woman referred to me by my PCPs nurse - a woman referred to me by my hairdresser- diagnosed by some of my same docs Are these brochures that I could get several copies of and attach a personal note to them?
  16. That's great news. Let us know how you continue to progress and what happens when you get the other(s) out. I know this issue isone that others have been concerned about too so your story is helpful to share.
  17. My case is complex w "crashes" approximately every 1-3 days. We suspect my crashes have to do with my Mast Cell Activation Syndrome. They occur spontaneously a couple of times a week but can also be exacerbated by various external triggers (meds, chemical exposure, stress, heat, sun, etc.). May also have some post exertional component but the while the crashes vary in severity they always involved severe: - brain fog - body pain - fatigue - hypersensitivity (among many other symptoms- including my digestion shutting down ) During crashes I am non- functioning in bed. I cannot drive, struggle to walk, talk. Yesterday I was on a date night w my husband and shopped a little. Today I cannot speak in sentences and a short walk to the bathroom requires the energy of a marathon. Usually 2 days in bed flat on my back and I'll be able to get up again but sometimes that is not enough and an IV will bail me out. I spend about 50% of my time crashing. We suspect during the bad days the mast cells are creating a cytokine storm-like environment and then they run out of ammunition (so to speak) and then I have good days. It is a bit of a roller coaster ride. Pushing salt and fluids is good but if you, like many of us have issues in the GI area, sometimes all the fluid in the world won't get absorbed properly getting the fluid to where it needs to go- the cells. I've had multiple docs who specialize in Autonomic dysfunction prescribe it. After explaining to my cardio, he offered to write the script and now I usually get it through my PCP who has a nurse in his lab administer it to me via an infusion pump in their office. I call her and she usually fits me in, when I travel I try to find an IV therapy dept at a local hospital and get preauthorization. Some here even get it through home health which would be great- just couldn't make it work for me at this point. Usually if a doc along prescribe it, they just don't know or are not willing to listen. I dont go back to docs who aren't willing to learn about research I Bring to them. Itis the only way I've been able to persever through this.
  18. Matt, Honestly even the top researchers are not exactly sure why and how it helps pts with POtS but we do know a few things: - POtS pts sometimes struggle with hypovolemia (low blood volume). In these cases the increased fluid is thought to be helpful in raising the blood plasma level. - also, some of us have issues getting the fluid and sodium into the cells because of all sorts of reasons- (malabsorbtion, mitochondrial dysfunction, etc) so not having to use the digestive track for getting the fluid and salt in has been thought to be helpful. - all nervous system cells operate electrically via use of a chemical pump called the "sodium potassium pump.". Essentially the right balance of sodium and potassium helps nerves work well. And since many of us struggle in processing sodium the increased sodium volume can be helpful. - another thought is that sodium stimulates adrenaline production, therefore increasing blood pressure. May seem counterintuitive, especially for those of us with hyperadrenergic POtS, but the external stimuli of adrenal production helps the brain to not overproduce adrenaline (or norepinephrine.)
  19. The use of Saline IV has been a lifesaver for me. I get it either as a bail out- when I'm crashing hard and my body can't seem to kick it- or as a preventative measure before a big trip, airplane ride, big event or, as in the case last Friday, before my daughter played the lead role in 3 back to back shows and I wanted to be there to see her. On average I get one 2 ltr infusion a month. And when I travel, I make sure I know where I can go to get it and if staying anywhere for a length of time will get it preregistered so as not to have to go the ER route. Saline IV gives me 24-48 hrs of feeling closer to normal- so you do have to evaluate if the cost is worth the benefit. Not just the financial cost but also the stress on your veins cost. I'm a hard stick and although sometimes we get lucky and the nurse can get in first time, my average is more like 3-4 attempts. So even in IV access infection is a cost that I'm willing to live with. Physicians seem to vary a bit on the use of saline but most Dysautonomia docs will recommend it for these types of reasons. Depending on the case, sometimes a chest port can be put in for easier veneous accesss. This however is more risky in terms of chance of infection so most docs will prescribe on a case by case basis. There was a recent study done at Vanderbilt on the use of IV saline and it is clearly helpful in most but not all POtS pts. I have a couple of thoughts: 1- have you considered stopping your cycle with contraceptive meds? That might be enough to help you. In my case, I was getting either anemic or polycythemic every month. I would lose so much blood and my body just couldn't cope well. Since going on the pill, which I don't particularly like, this problem no longer exists. 2. If you know IV Saline is helpful for you find another doctor who will prescribe it. If your doc questions it, bring research proving it's efficacy, or even anecdotal posts on this forum about all the patients who have found it helpful. Just type "saline IV" in the search bar of the forum. You'll get lots of info. Most docs who don't have a lot of experience treating autonomic dysfunction are not aware of the benefits of this for us. As a side note, I thought it was the increased volume of fluid that was so helpful. Have learned that it is the huge surge of sodium that is what helps me so much. God bless.
  20. Here's a Link to the Mastocytosis Society website. The key is to be seen by a hematologist or immunologist who understands MCAS. Any of the members of the medical advisory board of this organization would be in the know. Most allergist/immunologist are not up to date on MCAS and the research currently being done. If a doc just wants to run a serum tryptase or a urinary methyl histamine that is a red flag they are not up to date. http://www.tmsforacure.org/patients/patients.php
  21. Posted this recently on another thread but couldn't help myself from posting again re: potatoes They are the most common nightshade vegetable. Nightshade veggies have alkoloids in them which can effect nervous system functioning. In potatoes the Alkoloids actually decreases cholinesterase - the enzyme which is a catalyst for Acetycholine. So it functions in the same way Mestinon / Pyridostigmine does. I've been on Pyridostigmine for over a year. My conclusion: if you can benefit from a decrease in Acetycholine eat a diet high in potatoes. Thanks for posting all those other benefits too. And, Rama that is interesting about the Spondylitis - my sister in law lives in Idaho, potato country. She has recently been diagnosed with this too. Wonder if her diet is high in potatoes ?
  22. Welcome to the forum! Glad you are here. And, living in Toledo is a great place if you have Dysautonomia bc you are close to many major medical centers who have expertise in this. Unfortunately, for the most part, there is a disconnect between the study of Systemic Mast Cell Disease and Dysautonomia. Many experienced Dysautonomia docs are familiar w MCAD but really aren't assessing it, and treating it the way a hematologist or immunologist who is studying MCAD would. The good news is Dr. Grubb has recognized the link between some subsets of POTS pts and MCA. He suspects less than 10% of patients have this and from my last review of his position on this he, like many of the other major medical center docs, look for flushing before running either a urinary Methylhistamine test or a serum tryptase test following a flushing episode. Unfortunately these are only a few tests that can confirm MCAD. On the other hand, Dr. Afrin, who sits on the Mastocytosis Medical Advisory board has a 4 part diagnostic criteria that includes many lab tests well beyond the urinary methyl histamine. (see the 2013 DINET winter newsletter- an article he helped me write on this topic). Interestingly, he suspects a sizable number of Dysautonomia patients also have MCAD. He and his colleagues on the Mastocytosis Society medical board are currently working on better diagnostic criteria. In the meantime, most Dysautonomia docs are still looking for cutaneous flushing episodes and using labs that may not give enough evidence to rule out MCAD. Yes. You can have MCAD without flushing episodes. I've had a handful of flushing episodes but by reducing my niacin intake I've been able to limit the cutaneous flushing experiences. Now I get flushing episodes that are more "internal". Like a chemical burn of my blood and bones- it's horrible but it does not present like the flushing episodes we commonly hear about. The article does a better job of explaining it but essentially the mast cell has an unknown number of chemical mediators that can cause havoc in our bodies. The biggest clue that you might want to get tested for Mast Cell Activation Disease is the presence of symptoms in most or all organ systems. Feel free to PM me. Also, you might consider printing that article and taking it to Dr. Grubb. It might help him to eventually conne t with Dr. Afrin, or others, to begin a dialogue about how Dysautonomia may or may not be connected.
  23. Yes. I have both these issues and suspect they are different reactions. I suspect the massage stimulates my parasympathetic system which releases histamines- especially in mylegs- I also tend to get a lot of salivation during, following massage. Am allergic to cats but we have a hamster and I get the same feeling sometimes. when I am symptomatic I can't hold paper in my hands bc it feels like I'm holding a razor blad- hurts. Can't shave legs either during these times- like I'm cutting myself. Suspect this is simply sensory integration issues when sympathetic system is overstimulated.
  • Create New...