Caty

I have been thinking so much about you all and how your words and encouragement meant so much for me two years ago when I became so sick. You can search my first posts describing all my symptoms. I was diagnosed with dysautonomia and MCAS by a neurologist specialist. She helped me improve so much with high dose antihistamines and Atenolol. Then in Jan. this year we decided to remove the carpet in our home, one of my sons and I have suffered for years of very strong seasonal allergies. Three days after the carpet removal I started with a non stop cough, fever and all my symptoms of dysautonomia came back full force: the fatigue, the nausea, the confusion, anxiety and depression, palpitations, inability to find words, tingling. We were terrified, but thank God this finally helped us make the connection with the house. There was something in the house making me sick. So we fled to the coast. We live near Eugene, OR. It was incredible to see how every day some of the symptoms would go away. First I was able to eat then stand again, the strength slowly came back, then I could think and sleep through he night, and stop crying. We did more research about possible causes and thought of toxic mold. We tested the house with DNA of the dust and found high levels of various kinds of toxic mold! Now many things started to make sense, for example, every time I would get into the pantry I would feel overwhelmed to the point of crying (ok, our diets are overwhelming but not like that!) and the pantry is one of the places with more water damage from a skylight and with toxic mold. One dear lady told me two years ago in this wonderful forum that she had been like I was, in bed, unable to walk more that a few steps, and had mold in her apartment. Both her and her husband were ill. After deciding to move she was to be transported laying down in the vehicle. Well, after traveling for several hours and hitting the dessert, she was able to stand and walk. She couldn't believe it. But knew that the mold had been the problem and she had been well ever since. Back then, I was intrigued but certain that that couldn't be the problem for me. We knew we had some mold and leaks in our home but no black walls or scary humid basements. How wrong I was! Please forgive me for not returning sooner. These months we have had to figure many things out to find a new clean place to live. We realized that my symptoms would return immediately if I was exposed to belongings from the moldy house. I had read about this but couldn't believe it at all... until I experienced it. So with few things that I thoroughly washed we moved to a newly built rental and I am doing so well. I do know that there are many causes of dysautonomia and that not everyone's problem is mold. Definitely not. But I want to encourage you to discard this possibility. How much I wish I could have done that in the worse of my illness, when I felt I might be dying. There's two relatively simple steps you can take: First leave your home for a couple of weeks. I know this seems overwhelming and plain imposible when we are unable to get up, but consider te possibility. It should be with almost none of your stuff. Only a few changes of clothes that you could wash several times once in the place you'll be going. This place can be a hotel or an Airbnb. You don't want to go for two weeks to a family member's home that could also have mold. You'll see if some of the symptoms improve or change and go from there. Second, test your home with DNA of the dust (not air samples) for toxic mold. Places like Envirobiomics Lab do this test and see how your home is. Because water damage and mold can be hidden behind walls or floors. Of course do your research, there's some much out there and it can often seem crazy because some people can go overboard but please do consider it seriously. I wish I had known two years ago but God knows why things happen the way they do. Dr. Schoemaker is an MD that has done so much research in the field of mold toxicity, in my opinion. You may be interested his website, there's much to learn in there. With my prayers for all.

🤣 Exactly! I still think there’s something wrong with him!

Same here! Growing up never thought much about it until I was married and realized how much water my husband drinks and his frequent need to urinate. I used to be glad I could be all day without having to use the toilet ( just a morning and before bed visit were enough for me)... I am glad you brought it up. An other mystery solved!

What about a relationship between MCAS and B12 or VitD? Anybody has seen some papers/research on this?

Hello everybody, I have been recently reviewing again the info available on B12. I know the topic has been brought up in the forum many times before but I thought I would share some thoughts. I noticed that there is a medically recorded (in medical journals) relationship between spinal stenosis and B12 deficiency. I wondered if anyone has tried high doses of B12 as recomended by Pocholock RN or Chandy MD and seen some improvement. This doses need to be maintained in a regular schedule for months before seeing recovery but improvement is usually seen after a week of two of treatment.... I wondered how many of our MCAS or Dysautonomia symptoms may be related or could be improved with B12... I've observed improvement in my digestive symptoms before, after using B12... but have always discontinued use after a few weeks thinking that the improvement was achieved and I should discontinue its use... I just thought how many have had diagnoses or symptoms of spinal stenosis and how supplementing with B12 may be of great help. This video is very informative: https://youtu.be/BvEizypoyO0 Blessings, Caty

Hi Jim! Have you heard of Dr Afrin? He described MCAS. In his book he talks about how he frequently sees patients develop MCAS after a gastric band surgery. Have you read his book? If you haven’t, please do get it. “Never bet against Occam” THe title means: Multiple dx are more likely caused by one cause than many. Best wishes!

Has anyone experimented living some place else for a few weeks or months with the specific purpose of seeking improvement of symptoms? What about experiences actually moving? I remember moving to our current area 10 years ago. The first year I was well, but the second spring the allergies began and increased through out the years. With our children it was something similar. They began developing allergies at age 3 or 4. I wonder if we happened to move, the first year I would see improvement and be allergy free only to develop symptoms a year after the move... What do you think?

Thank you Macca for your thoughts and ideas. It is very strange. I cannot pinpoint a single food that would be the culprit since our diet is pretty much the same here and in Mexico. Actually in Mexico I did eat everything! and felt so well - no GERD symptoms... My feeling is that Mast cells are active again reacting more so to the local allergens. We live in an area very high in grass and tree allergens. I am already on H1 and H2 blockers which improved the severe onset of dysautonomia a year ago. During the trip to Mexico I kept the meds exactly the same but my overall well being improved to my before dysautonomia state... Wish there were some of you out there that have felt better going to dyer, warmer places... have been reading that also altitude can make a difference with opposite results depending on the person.

Hello dear all! We just came back to Oregon after a 3 week trip to Mexico. My husband and I are originally from there and went to visit family. This was my first trip after having been so sick and diagnosed with Dysautonomia and MCAS last year. Before we left I had improved with antihistamines and a tinny dose of Atenolol, but still GI sx remained together with brain fog, tiredness, sensory issues and a feeling of sadness or emotional ups and downs. On our way there I was tired but made it ok. As the days went by, I felt better, the GI sx improved a lot to the extent that I forgot about them. I felt my strength was back to normal and the brain fog gone. When we returned I was so happy to realize how much I had improved with the trip and renewed my regular activities at home with my old energy and clarity of mind. Exactly 9 days after being back, I woke up to the old GI symptoms. That day I felt how the Dysautonomia was back, not only GI sx but also the sensory issues, the fogginess and the tiredness were coming back... Has anybody else experienced this? It seems difficult to rule out my home or the area where we live as main factors. They imply living somewhere else! What would you do?

Never heard of him but he surely sounds wonderful! I hope you do get to meet him and I that he can help your girls!

Thank you all for being there and your replies. How greatful I feel for this forum! It’s hard, and we are used to finding a quick fix for things, illnesses and any discomfort. Not knowing what to do or how to make your child feel better is hard! We have been in this home for 10 years. Since he was little he had episodes of hives lasting weeks when any food would bring them back. Chronic diarrhea, asthma, ulcers in his mouth... a constellation of weird illnesses and some unusual behaviors that fluctuate. I’ve read stories here of people starting with symptoms from living in buildings with water damage. That made me wonder... Our doctors are used to seeing low Vit D levels in this area and don’t think much about supplementation. Our Vit D levels come always low (in the low 20’s) in winter. Have you experienced any difference with supplementation? Thanks again for your kindness and reassurance. We love our home! We’ve been so happy here all these years. Being worried about our home being harmful for our own family is not fun.

First of all, I ask the Lord for strength and hope for all of us. I am trying to find support in your experience. I have been recently diagnosed with POTS and MCAS and in the ups and downs of all these strange and scary symptoms I am finding it very hard to notice more and more signs of dysautonomia/ MCAS in my 11yo son. It has crossed my mind multiple times that our illness may be related to environmental conditions but the thought of moving without proof is not logical. We are 6 in our family and only him and I have dysautonomia symptoms. But it seems to me that all winter everybody has symptoms of “getting sick” without obviously having a cold or an infection. We live in Oregon in a valley that is known for increased allergies in summer and mold issues in winter... However it seems to me that some of you started with dysautonomia while living in dry places... We have a well and water tests have always been good. Could it be pesticide from fields around us? It is exhausting to think all this, but at same time, how not to search for answers? for healing? Why there’s so many people with dysautonomia? Our food? Then I remember that I don’t have much strength or brains to figure it all out... so I come to you. May we grow in patience...perseverance ...and trust. Caty

Danny and peachy, this is how my dysautonomia started- increased heartburn, taquicardia that would wake me up or that would begin as soon as I changed position in bed, the tachy came together with nausea and a shaky, a tremor feeling inside as well as teeth chattering, anxiety and hypersensitivity to sound. This happened early morning, just like you say. Symptoms have slowly improved with medication- I don’t have the tachycardia because I am on Atenolol, antihistamines help with the heartburn, the nausea, the fatigue and other esophageal symptoms I had during the day. But still last nigh I woke up shaking/ teeth chattering when I changed positivos in the early morning. This has remained. Of course the anxiety and crying and negative thoughts all come together. My dr. says this is typical of dysautonomia and it is high adrenaline at that time of day. For some reason symptoms had gotten worse this last week... Hope you are both feeling better. Like Pistol said, we have to use the meds if we want to feel better. Have to take the risk, and starting slow- with a tiny dose- makes side effects ( in case there’s any) tolerable or limited. Wish someone could tell us what meds might help. Someone has mentioned Clonidine but I can’t try it because my BP is Low. Please tell us how you are doing.

As far as I can understand nothing to be worried about. The findings are in your sinuses... chronic congestion related? But I am no expert 😉

My problems started August this year: first scary GI symptoms then POTS. Intense Gerd, esophageal spasms, dysphagia, intense nausea, and pots symptoms after trying to eat. I was diagnosed with MCAS and possible pots. After starting treatment for MCAS I saw an immediate improvement in the GI symptoms and they still continue to improve. Pots symptoms like fatigue, lightheadedness, have improved also. My doc said that most people with GI symptoms at the beginning of the disease have MCAS. I am on Zyrtec, Zantac, Quercetin and a tiny dose of Atenolol and much improved!

Hi Jessica! You know how we have these symptoms in common. I am also considering Clonidine or Methyldopa... I’ve read Clonidine has less side effects but I guess it’s like everything, it depends on the person. My BP is on the low side 90/60. I am taking Atenolol right now to control HR and keep wondering if adding one of the two in a tiny dose could help with the night surges and all other hyper sx... Your BP is higher than mine it may be worth to try... I will ask my doctor next time. Like you, I don’t want to risk messing up things more. Hopefully someone with more experience can give you a better idea... I am doing better with MCAS tx but the fear and sadness come full force when I more symptomatic. MCAS treatment hasn’t fixed the hyperadrenergic state, but you know what? It has decreased it a bit... Have you considered MCAS? Hope you find something that works soon❤️ Big hug!

Hi Lisa, I am new in all this. I started with symptoms a few months ago but GI issues have been as scary as the tachycardia for me. I have seen great improvement with MCAS treatment, I was started with Zyrtec and Zantac and I could see improvement the next day (started one and a few days later the other). It was crazy. The digestive sx are always there, when it’s time for the next dose I can feel it ( the nausea comes back and I feel sick overall). Have you explored a possible MCAS dx? I still struggle with hyperadrenergic sx, haven’t found a way to improve them yet, and I need atenolol for the tachycardia. But the GI is controlled with the antihistamines. A big hug and my prayers for you. Caty

Oh blizzard I am so sorry! I am so glad that bad gallbladder has it’s hours counted Those chili cheese fries sound yummy! In the meantime I will accompany you with more modest eating. I am still afraid to eat. You sound like a very brave and strong person that has been through a lot with dysautonomia... Thank you for your example. I will be praying for you.

Thank you so much for your thoughts and ideas. How much I want to understand all the physiology... we have the best incentive right? But then I also feel it takes a toll on me to read so much and try to have all the answers (impossible). But we need to become our best advocates! ...it’s a difficult balance. My prayers for all of you ❤️

Hi Pistol, thank you for replying. My doctor didn’t seem familiar with adrenaline surges and gave me the option either way. I will be off meds next week for a couple of days for a formal TTT. I can wait to have the catecholamines done then or I can do it now with the meds on... What has been your experience?

Hello dear all, I have a question: I am wondering if I should stop the Propranolol and the Antihistamines prior to a catecholamines test (laying down and standing). What has been your experience? My dr. said I didn’t have to be off the meds but it seems to me that these meds do affect the catecholamin levels and I would really like for it to be accurate.

An update dear all: I am taking Propanolol tid and the tachycardia and palpitations are under control. My Dr. also suspected MCAS so I started taking Zyrtec and that has helped also ( helped with the esophagus and am more awake and could sleep relatively better). But I have two days now of waking up at 3am and every hour after that feeling the same adrenaline high: increased HR, nausea, anxiety. Also the GERD is getting worse again... I wonder if the effect is wearing off or what. I tried Zantac ( suggested together with Zyrtec for MCAS) but I got increased salivation and esophageal symptoms. These last couple of days also I have felt more jittery and hypersensitive to visual movement and sound. I jump with loud noises and have had daily BMs! Completely unusual for me. Nothing has changed in meds or food. Should I expect the disease to stabilize at some point? Some of you share that things get better and you can learn to know your body but at the same time it is commonly unpredictable... Still feel so confused and teary all the time...

Please forgive me for being so anxious to improve. I had never been so sick like this and it’s so hard to be patient... I am in bed most of the day and the kids just come to be with me and worry and wonder when is mommy going to get better.

Dear all, I am not sure what to do. I used Atenolol last night for the first time. Only half a pill. I slept better than for the last two months since I started with symptoms. Tachycardia is definitely under control, none at night nor sudden palpitations when turning in bed. Also the nausea is better and I didn’t get tachy or sick-weak and foggy after eating... so all of that is improvement but I am lethargic, my eyes are closing and is not volume related. The Atenolol is doing this. What should I do? Will this lethargy get better with time? Should I try 1/4 of the tablet? My doctor advised to switch the Propranolol to Atenolol because the nights were rough with only the Propranolol... Today I felt calmer in the morning (I usually cry for a while after waking up) but it was more like I couldn’t quite wake up... Should I wait it out? I am laying in bed most of the day and in the afternoon I make myself get up and move. But early in the day I’ve been too sick and weak and today lethargic... I am still in denial and this is hard to accept. How long did it take you to accept this illness and have a more positive attitude? Thank you all for being there ❤️

Thank you, thank you, thank you! I feel like I can now try the Propanol without being afraid. I thought it was Metoprolol but it is actually Propanolol. Would this make a difference? My BP is low, not high- around 100/60 and does not change much. What varies is the HR. StayAtHomeMom, when I read that you homeschool too I cried and cried . I have 4 kids 16, 14, 10 and 3. The first and third work well on their own but the second has special needs and needs more supervision. The 16 yo does Homeschool Connections online and the 10 yo we pick and choose curriculum for every subject. We’ve had friends helping me these weeks because I can’t function until about noon. I am thinking that the anxiety is making everything worse but again I am afraid to try anything... Would you please share with me what has worked for you for anxiety? Is there anything mild that could just give me a little boost? Perhaps like you all say, if the Prpanolol helps with the tachycardia at night, I will be able to sleep better and feel happier as a result. You are all a blessing to me ❤️