angelina

I finally was able to give my family a "teaching moment" over Thanksgiving. For the past year as I have been trying to figure out my diagnosis, my rather large, well-meaning Italian family have often tried to understand and treat my strange symptoms the best way they could...through "food therapy". If something is wrong, have some food. Unfortunately because of the MCAS, there are a lot of foods I just cannot eat anymore. I try to explain this, but somehow it gets lost in translation. So despite my intentions to cook and bring my own "safe" food, my parents over-ruled my better judgment and stated they would prepare those safe foods for me...enough for all to enjoy. I hesitated, but gave in. Half way through the meal I began to flush. I could feel my heart rate quicken. I became nauseous and dizzy at the table. I quietly excused myself and frantically started going through the cabinets for Benadryl!!! None to be found...yikes! I usually carry it in my car and have an epi pen there too, but this time I caught a ride. So in the middle of dinner, on Thanksgiving, I had to get someone to drive me to the nearest CVS (thank you for being open!!!!) and get Benadryl. My father says, "...sorry! Your mother and I didn't mean to try and kill you on Thanksgiving! Next year you can cook."

Angel1234, I have experienced severe gastritis and intestinal issues for years, but never had a pinpoint diagnosis for why the inflammation. The MCAS diagnosis is the closest I have gotten to figuring out what is wrong and why I have progressed to more severe dysautonomic problems as well as malabsorption. Some things have alleviated a few of the GI symptoms such as going GF, limiting histamine rich foods, adding SAMe to my daily regiment, etc. I feel that if I can control the inflammation and get my anemia under control then many of the other pieces will balance.

I do not know if damage can occur because of R. rosea, but it is a good idea to stop especially if you are experiencing problems (but check with your doctor or pharmacist). I believe its initial use and study was with Russian fighter pilots. They found that it assisted them in keeping alert and focused during combat battles. Thus it was meant to be taken for a short "stress". It actually loses effectiveness when taken continuously over several months. R. rosea acts like a benzo and uses the same GABA receptors. So if you were experiencing problems with benzo, you may be duplicating your problem with Rhodiola.

Hi Gemma, I noticed you are taking or have taken Rhodeola rosea. Are you still on it? When do you take it during the day and how much do you take? And finally, if you are still taking it, how long have you been on it? The reason why I ask is that this particular adaptogen increases norepinephrine, serotonin and dopamine. It acts as an inotropic drug on the heart, meaning it affects the contractions of the cardiac muscles. As with many supplements, you may want to seek out the advice of a Naturopathic doctor in order to make sure you are taking the correct herbs for your condition.

Hi, Just a side thought... when your doctor found your malabsorption issues, did he/she put you on any supplements like folate, Vitamin B's, or Vitamin D? This can make a big difference with your energy level and some POTS symptoms. Also, many things may be gluten-free, yet are processed in a facility that handles other gluten containing products thus cross contaminating them. A product is only truly gluten free if it contains the special certified gluten free label which states it has been processed in an allergen free facility.

Hi! Sorry you are feeling so isolated right now. But glad you have reached out to the DINET community for some support. I would love it if it was 70 with no humidity, but today in Chicago it feels like 20 and rather windy. During the Fall and Winter my hands turn blue and I have pretty painful neuropathy. I carry those hand warmers with me wherever I go. It helps with the increased circulation and also numbs some of the neuropathy pain. In the Summer I have the opposite problem where my hands and feet swell and turn bright red. Compression socks help a bit as well as ice packs. As for anxiety, especially when out in crowds, I use breathing techniques. I highly recommend "The Healing Power of the Breath" by Richard Brown, MD and Patricia L. Gerbarg, MD. The book discusses simple techniques and it includes a CD with breathing practices. My hearing has gotten very acute as my disease has progressed and many sounds drive me crazy, so I just put on my earphones and listen to whatever music relaxes me and I tune out the bad stuff while concentrating on my breathing. It has made the world of difference and I find I can calm myself down as well as slow my heart rate too. I hope this helps!

Hi Ben, I also was diagnosed with Hyperadrenergic State (Noreprinephrine both supine and standing) with no known cause from Mayo. I also had Pheo-type symptomology, tested positive then tested negative. I also tested negative for paraganglioma (these are tumors that secrete norepinephrine but are not found on the adrenals). I do not have a POTS diagnosis but still have many of the symptoms that fall under dysautonomia. My symptoms started out of the blue after a bought of the flu. Have you been evaluated for Mast Cell Activation ? You may want to add this into your rule out list as MCAS/MCAD fits here as well. Some Allergists have experience in MCAS/MCAD, but there are few specialists. If you do a search on here you will find good resources. At least between Infectious Disease and Allergy you may get an answer. Angelina

Racer, where do you live? If you don't feel comfortable sharing in this forum, private message me. I have worked in Case Management for social service agencies in the past and may be able to get you plugged into services close where you live.

Thinking of you today. Will be sending you positive energy while you go through this hard time. Many of us have been there, it is humbling and a pain in the *** all at the same time. Seek out some local support so you can keep on your feet. Don't be afraid or ashamed to ask for help. Most jobs that offer insurance have to offer you COBRA, so make sure you ask your HR contact about filling out that paperwork. Although this means you have to foot the bill for all of your insurance, at least you won't be without. Apply for unemployment today, if you can. I know this sounds like a lot of hassle, but getting the paperwork started will allow you time to figure out your next move. Unemployment has databases of jobs as well as other resources they can hook you in to so make an appointment to speak with a counselor who can point you in the directions you need assistance. They are motivated to get you back to work. Hang in there!

Spinner, very thought provoking and also makes me analyze what kind of friend am I. When I was in my 20's I was that person who ran to everyone's bedside. Unfortunately many of those friends have now passed. I guess that is also part of the change that happens the longer you live with a chronic illness, there are fewer people around. Last year I had a friend who was diagnosed with colon cancer, I couldn't physically go to see her, but I cooked food, called and sent little notes so she knew I was thinking of her. She passed away earlier this year, but her sister wrote me the most beautiful note about how loved and cared for her sister felt. Doing things for others makes me feel good, it is my medicine and helps me make it through another day. I think of the people I can help, and give opportunities to those who WANT to help me. I think I mentioned on another post the moto I learned from a friend of mine, "you won't survive if you don't get rid of the toxic people in your life." If people get it they get it, if they don't, they don't. I don't give much thought to negative things anymore because I am too busy thinking about living and enjoying, regardless of how simple those "joys" have become. I would rather spend all my time on the one person who gets it than thinking about the 30 who don't. Recently I have found when I am having a down day, I just get up on the Forum and seek out a story or an example where one of "Us" is providing comfort and understanding to another. It inspires me. It inspires me to be a better friend. I hope everyone can take a few moments each day to focus on that "ONE" good thing!

I have read both positive and negatives about Kefir. From people I know with MCAD/MCAS, CFS, and IBS it can work both ways help and hinder. There also seems to be a difference between homemade and store bought too. Probably due to the amount of live and active bacteria and yeast. I was told to stay away from all things fermented, and in some cases like wine, beer, certain cheeses, etc. I immediately react, but yogurt and kefir I can take in small amounts with no problem. But I do have a threshold before I start reacting to them as well. I think different people react to products differently. It doesn't hurt to try something if you think it will help.

Recently I have been going through the list of hysterectomy sparing choices for getting rid of symptomatic fibroids. I was wondering if anyone has had a uterine embolization for fibroids, especially those of you with MCAS/MCAD. It seems the Interventional Radiologist has never had an MCAS/MCAD patient before and therefore no experience in this area. Obviously there is going to be an inflammatory response to closing off the blood supply to the fibroids, and the subsequent dying off of the tissue. I would be interested in hearing your experiences. Thanks in advance! Angelina

Hi Pumpkin, I too am in the "old" category. I have not been on here very long and may have missed a longer explanation of how your boyfriend feels about you and POTS. And I also don't know if either of you have discussed moving your relationship to the next level of marriage. That said, what I do know is if someone isn't sticking up for you now, he most likely will not after marriage. A very wise person told me something when I was in my 20's and newly diagnosed with HIV...you will not survive if you don't get rid of the toxic people in your life. You have to surround yourself with positive people who will be there for you. Chronic illness is a very long road that has many ups and downs and stretches even the strongest family and friendship bonds. I know I have had to tell several friends and relatives, "Hey, you make up your mind. You are either with me or I really don't need you in my life." Twenty five years later I am still here and doing just fine without them. It is their loss, not mine. Perhaps boyfriend and potential MIL need the "either you are with me, or not" talk. AND good for you for making progress!!!! Don't let anyone take that away from you. You own it.

Wow Cala! So sorry about your Neuro. There must be something up with Neurologists these days. I fired mine after he didn't get back to me for 2 and half months. His last words to me were, "I am going on vacation tomorrow, but I will look at your results before I leave and let you know my plan." After several phone calls and emails all I got was a nurse telling me she had given him my messages and would I like to make an appointment. So I asked why I would want to drive almost 6 hours to see him without first knowing the results of the tests I had had and the "plan" he had in mind. His nasty reply ( through the nurse via email) was take some iron and not bother him! Really???? Thank goodness for your GP!

Hi, I had a similar reaction to cbaki for several of my MRI/CT scans. (It was like being shot up with gasoline! Most painful thing I have ever experienced. The shaky nasty nausea after is the big adrenaline surge .) But, in retrospect during many of those scans where I had a reaction I was very symptomatic and was having Mast Cell reactions to even saline. My veins were so scarred they couldn't get the needle in. I had a MIBG just recently with no problem because I wasn't symptomatic, go figure. I would ask your Doc if there is something you could take before that won't get in the way of the test. Good luck! Keep positive LMG!