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Everything posted by Godsgal

  1. Wowee!!! I am just now seeing all the questions. Well let me first say that I feel like a walking miracle. I'm not sure if everyone who posted here knows how sick I was but Mack's Mom. Let me say that by the grace of God, I am AMAZINGLY better. I bought Annie Hopper's program for at home and I noticed results the first day. I used to be able to eat 8 things. That's it. And I was so sick I was taking 75-100 mg. of benadryl a day plus 20 mg of zyrtec and all the other mast cells meds. I haven't even taken rescue meds since October. I feel so blessed. To answer Kate & Serbo, I feel like it's helping all my symptoms, mast cell symptoms are nearly gone. I can eat tons of stuff again. I love it. I can push my son in the grocery cart again and do grocery shopping not in the little electric carts. I am able to push my son around the neighborhood in his bike, and walk with my other son again. For those who don't know, I used to be bedridden and literally dragging myself along the wall just to get to the bathroom. I am taking less midodrine....skipping the 3rd dose in my day. I was also homebound....I could go nowhere due to my chemical sensitivities. It was extremely lonely and I was very isolated. My chemical/fragrance sensitivities are nearly non-existant which is pretty amazing since I couldn't even go to church, be near anyone except my own family, or be anywhere near chemicals at the grocery store. I was using a mask at points. I did the at home DVD's over 4 days like it recommends. It has been one of the best things I have ever done for me. I finally feel like I am going to get rid of this crazy mess for good! I have had full blown mast cell attacks completely STOP without medication when I start the neuroplasticity exercises. It really is amazing. There is another friend I have on here with POTS/mast cell issues names JENWIC and she did it as well and is getting better just like me.
  2. I too have gotten the numb face , throat, back, etc. Very disconcerting, I know! But it will go away with the right meds and avoiding the offending item.
  3. MissMarple------My mast cell issues have been GREATLY reduced to almost a nil which is amazing considering some of the pleas I have made on here! I did it at home. You can go to the seminar or do it at home.
  4. I honestly am not extremely knowledgeable about the treatments out there beyond neuroplasticity. Neuroplasticity is the basis of what I am doing and I have been highly medicated on anti-histamines, near full-blown anaphylactic episodes, and have had POTS symptoms to the hilt. Neuroplasticity and faith in God has been the single most helpful thing to my sensitivities.
  5. hey....well I started a neuroplasticity program in October but only little bits and pieces sent from a friend. I decided to buy my own. And I'm on the 4th day and it's amazing. Yes I am still on my meds but I'm taking less midodrine and, normally I'm anxious and really need to take my meds at certain times. Now I forget to take them. What a difference!!! Praise GOD!!! I have added tons of foods back into my diet where I used to only be able to eat 8 things only. I can use toothpaste and deodorant again and I don't have to use benadryl to wash my hair. So incredibly grateful.
  6. Research multiple chemical sensitivity. I had this for a while and it totally changed my life during that time. I was totally homebound and unable to go anywhere or be around people. It made my life very lonely and isolated. I am incorporating my faith in God/Christ with a program www.dnrsystem.com and it has made a HUGE difference in this, along with my POTS/mast cell symptoms. I'm getting my life back thank God!!!! I read a book prior because I was pretty skeptical....The brain that changes itself...by Dr. Norman Doidge. I really now believe that all my pots/mast cell stuff is an impaired limbic system issue. And let me tell you, if I had read this 3 months ago, I would think I was a quack. But the proof is in the pudding. A lot of people on here know how sick I have been and I am MUCH, MUCH better.
  7. Could singulair be of any help? I have had lots of breathing issues related to my MCAD/pots stuff. I take singulair 10 mg twice a day and that helps a lot! Plus my MCAD regime.
  8. When I get one, my heart rate is normal, but I have that feeling like when you swerve to avoid a near collision in your car and it takes a few minutes to get that feeling to go away. That OH CRAP...that just scared me half to death feeling. That's what it feels like to me.
  9. Just wanted to throw my 2 cents in here...I have MCAD and my tryptase is ALWAYS normal. Getting on the right meds is critical. If you are seriously reacting, take a good look at what you take. Singulair chewables would mess me up big time. And I have to start slow too. I would take an adult Singulair and just cut the thing in half before I took kids meds because of all the junk in them. The singulair helps me a lot. I take it twice a day. Doxepin is supposed to be 60-80 times more powerful than benadryl. Wish I could take it but it interferes with midodrine. If you're seriously reacting, try a change in meds and monitor what you are doing & eating closely. My heart breaks for you too because I have lived this very scenario too many times and it is heart wrenching to live with daily. Take care, prayers, & hugs.
  10. Hi...I have cutaneous masto...I would definitely get that biopsied and by someone who knows how to do it and what they are looking for.
  11. Hi....I have POTS & mast cell activation and I can't color my hair. I have lovely dark roots about 6 inches long with super blond bottoms. I just have to embrace my hair with love at this point as I can't even walk near a salon. I do see a lot of all natural hair colors on line that you can get at a health food store like whole foods (not sure if you have those where you are). That's what I would recommend. There are more natural things too like chamomile tea for blond hair and other natural dyes from the earth like lemon and all that but I have no clue if they work. I would google it!
  12. Hi Rich, I have POTS and mast cell activation disorder which is causing my POTS. I have a lot of breathing issues myself and very similar to yours. I find mine is aggravated by any physical activity, being hot, eating certain things, and being near things I'm allergic too. What helps me are mast cell meds which may be a nice experiment for you if you think you have a mast cell issue because mast cell meds are all over the counter and wouldn't hurt to take them (just check with your pharmact/doctor to clear you with any meds you're taking). So, an H1 blocker like benadryl, claritin, zyrtec, allegra plus an H2 blocker such as zantac (may help that GERD) or pepcid. I haven't med a person yet with mast cell issues that can tolerate pepcid.....I'm sure they exist but I notice on the mast cell forums most people take zantac. Anyway, those are easy things to try when you are out of breath to see if they help you (along with resting). My breathing issues have been so bad I couldn't walk from my bed to the bathroom, sing, or read a short book to my son. With my meds now, I can tolerate more walking (from my car into the grocery store)/activity, a little singing at church and a few books . Now I have a clear CT scan, lung scans, pulmonary function tests, and asthma test (all normal) and my mast cell doc says all my breathing issues are mast cell related. I would pay really close attention when you get shortness of breath. Being hot & exercise can cause mast cell activity. Now I'm not a doctor but this is just my experience. Also, an allergist will very likely rule you out for mast cell problems because it's very under researched and unheard of in the medical community. I have had a million doctors say I don't have this before I got with the experts and they helped me get better. An expert like Dr. Grubb (knows a little about mast cell stuff) or one of the mast cell experts (Dr. Afrin, Dr. Akin, Dr. Castells, Dr. Schwartz) would have to be the ones to diagnose or rule out as they are the only ones that really know about this stuff. Shoot, I went to Mayo for a week and they couldn't even find it. Nevertheless, I take Singulair 10 mg twice a day and that helps a lot. Even still, if I do too much or I'm around animals, dust, mold, whatever,.....just forget it. I will be short of breath. www.tmsforacure.org is a great site to read the symptoms of mast cell. Just wanted to give the mast cell side for you and maybe the other members on here can provide their take. Take care Rich and I hope this helps
  13. Hello there....I read your whole story and it reminded me of myself.....wanting so badly to find out what was causing this mysterious life changing illness. We all know how crazy this journey is and take heart you are not alone. I know a lot of us on here have different reasons why we have POTS and you can read a lot of the causes of POTS on this site outside of the forum. That is so helpful. When I first got sick last December I went to every field of medicine, the best researched doctor I could find, and I had them test me for everything. Neurology, cardiology, electrophysiology, rheumatology, allergy/immunology, endocrinology, hematology, and probably more. Then I went to Mayo Clinic in Florida for a week and received tons of testing while there. If you have good health insurance, I would recommend seeing different fields of medicine like I did. It really worked for me. All of us on here can give you suggestions but ultimately, its up to you to research out on this site what is causing your POTS and work with various doctors. And like someone mentioned, the specialists for POTS/dysautonomia would be the best sources for help. You did mention symptoms after eating which did remind me a lot of mast cell issues. Getting your adrenal glands checked is a great thing to do for anyone that has POTS probably. You mentioned getting hot, the flushing feeling....do you get that often? How about rashes, hives, burning skin? If so, I would definitely consider researching out the mast cell aspect and how it relates to POTS. Take care and if there is anything I can help with please let me know. Have faith and keep up the courage! Keep searching for answers and you'll find them! Take care and hugs!!
  14. I wanted to mention that beta blockers are not good for people with mast cell problems. I took one for a while and I was better off of it! Try the benadryl in a really bad moment and see if it helps. Or try an h1 (claritin, zyrtec, allegra) AND an H2 at the same time (pepcid, zantac, tagamet) when you're not feeling well and see if it helps. I have numbness across my face and I started trying to link it to things. Pepcid actually made my whole face & throat go numb for about a month. It was terrifying! I stopped the pepcid and the numbness stopped. Don't worry about cancer!!!! The numbness is directly related to mast cell issues. I mean, mention it to your doctor and everything but you know what I mean. I have worried so many times about cancer and I don't have it thank God. Take care and I hope you feel better soon.
  15. I agree with Mack's mom!!! You could also try claritin or allegra too if you don't like the drowsy factor of the meds Julie mentioned.
  16. Wow if I haven't felt exactly like you worded a million times. Losing hope, wondering if this is going to be my life. And then God reminds me He has a plan for me and I can and will get better in the right timing. I can tell you I have been terribly awful bedridden peeing in a bed pan to up walking around and able to stand if I keep moving for maybe 25 minutes now. I used to be like you...unable to do it long at all. I used to be unable to lift my head up because I would get orthostatic. Midodrine has helped me a lot. I'm wondering if that has been an option for you. I struggle with low bp and that has helped a lot. Getting to the bottom of my POTS/dysautonomia diagnosis has helped a lot too. In the beginning I sought out the best professionals in each medical group, rheumatology, neurology, hematology, allergy/immunology, cardiology, electrophysiology, all that. Then I went to Mayo Clinic for a week. Through all of that I found out the cause for my POTS--mast cell activation disorder. Maybe you could get medically checked out going through each field or maybe go to a tertiary care place such as Mayo could give you some really good answers. There are a lot of things to rule out in this condition that exacerbate it.....auto immune diseases, thyroid, adrenal glands, lyme disease, the list is a little overwhelming HOWEVER getting a lot of things ruled out so you can find answers is doable and worth it. You can look through the causes of what we have on this site and try to get them ruled out. I've been so lost, so down so many times. Take heart and believe you can get better. I'll be praying for you
  17. Thank you all for the answers. I emailed Dr. Afrin and he mentioned cancer drugs to me....I'm NOT going to do that. Period. I'm one of those simple back to the earth and the way God created things kinda girl and I know that Gleevac & Xolair aren't right for me. Definitely not yet. So can you take doxepin & atarax at the same time? I would LOVE something that would replace the zyrtec at night because it does have milk in it and I really need to get rid of that. I really feel strongly about either doxepin or atarax. At this point I'm almost ready to start stopping meds because I feel like they make me sicker. Every time I add in a med, I think I'm going to get better and I never quite achieve that. I just keep adding pills to take and not getting much relief. I take a lot of comfort in this forum and I THANK GOD I have this forum. I'm so blessed to talk to people that understand. THANK YOU all from the bottom of my heart. One day I'm going to be better at this thing and I'm going to be helping others on here. But right now I'm a mess and I appreciate the help. I will pay it forward one day...I know I will!!!
  18. Not doing well.....my husband and I are just falling apart. We have a 4 y/o and an 18 month old. I'm on the full medication protocol and I'm not getting better. We're just lost and devastated. My attacks are happening now to everything. I can't get in the pantry, I get sick in the laundry room, sick in my kids' rooms, my closet, when I'm near the computer, when I sit on the couch, at church, Target, I just react everywhere to many, many things and it's multiple times a day. I can't ride in my car without the windows down and being in my garage is very difficult too. I'm very limited to what I eat and frankly feel better if I don't eat. I know I need more antihistamines b/c benadryl and zyrtec stops my attacks. Yesterday had an attack after being exhausted. Had to take 100 mg of benadryl and extra zyrtec to stop it. Well I'm only 105 pounds so that put me out. I could barely walk. I'm desperate. I know many people see my meds and think I need more. SOMEBODY TELL ME WHERE I'M LACKING PLEASE!!! I have some major difficulties here and I don't know how to fix them. I really feel like the medicine is making me sicker honestly. I don't feel like zantac does anything for me but make me sick and pepcid makes me sick also. I get my zantac, benadryl, & ativan compounded. My brain tells me doxepin or atarax may help me but I don't know where to put it in my med schedule or if there is something else I need. A major problem I have is some of these meds have lactose monohydrate.....a component of milk which I'm allergic too. I know my singulair and zyrtec both have it and I can't get those compounded. I think the midodrine has it as well. I have already tried compounded claritin & otc allegra (not available for compounding). a.m. Singulair 10mg , zyrtec 5mg, Midodrine 5mg, Lorazepam .25 mg, zantac 150 mg. noon: midodrine 5mg, lorazepam .25mg, 2:30: zyrtec 5 mg p.m. Singulair 10 mg, zyrtec 10 mg, lorazepam .25 mg, zantac 150 mg. I know these meds are making me sick...and I know they have milk which I'm allergic too. I'm not sure how to proceed. My sensitivities are getting overwhelming. My whole family is suffering. Please anybody take the time to guide me on what to do. I have never had such a hopeless feeling in my life. I believe in God and in Jesus. I just need to be rescued. I need a door to open and I keep feeling like all I'm getting are doors slammed in my face. I don't want to suffer in front of my kids. That's the hardest. For my little boy who is 4 to walk up during a major attack and ask me what is happening. I'm having faith SOMEBODY out there can guide me with this difficult predicament I'm in. THANK YOU FOR ALL YOU ALL HAVE DONE FOR ME THUS FAR. AND GOD BLESS US ALL.
  19. I would definitely get carcinoid and pheochromocytoma ruled out. If you have done that, then I would consider mast cell activation especially since they are finding a link between POTS and EDS with it. I have MCAD and before my meds I would get a high body temp like that too. Take care and hopefully you find out the cause.
  20. I'm absolutely heartbroken and bawling right now. Feel totally hopeless and thank God I have my God and family or I would just hate life right now. Dr....-----I just don't get it!!!!!!!!!!!!!!! I told him my symptoms, POTS/dysautonomia, debilitating sensitivity to chemicals/fragrance/people/food/life, high heart rate, low blood pressure, intolerance to any physical activity, have to use a wheelchair when I'm out, heat intolerance, my negative bone marrow biopsy, positive skin biopsy, high urine methylhistamine, and he just acted dumbfounded. Like he had never heard of someone having the problems I have and only having MCAD. He told me I was doing myself a disservice to believe that mast cell activation was my only issue. He didn't believe my sensitivities, high heart rate, low bp (constant) could be just caused by this. I have had EVERY work up by EVERY field of medicine there is. I'm just absolutely devastated.....I thought these people were the end all be all and he was literally dumb founded that I had so many troubles. :'( God I'm a mess. I begged him to talk to another docor about my case. He said in all his patients he didn't have anyone like me. He said to get my adrenals checked which I think have been checked at least 3 times already. Someone out there help me. I'm just bawling....I'm devastated. I wasn't expecting him to act like I was such a freak of medicine. I was expecting him to say he could help me. He told me he had no recommendations as to my medicines and I was already on the protocol. I take Singulair 10 twice a day, Midodrine 5 3 times a day, zyrtec 5 mg, 5mg , 10 mg, zantac 150 mg twice aday, just started ativan and that seems to be helping me. I can't believe that guy! I can't be the only one!!!! He made me feel like a freak of medicine. :'( I'm devastated.......please someone help me.
  21. I have neuropathy on and off and also the burning sensations. I will tell you its all mast cell activation responses for me. I'm not saying that's what you have but it's definitely what I have. When I take things out of my diet or stop certain medications, these things will get better for me. Maybe something you eat or drink or medication you take is causing it. When I first started MCAD meds, I was taking 80 mg of pepcid a day and I had this terrible then. Finally I stopped the pepcid and this stopped for me. Dr. Afrin is wonderful by the way. By the grace of God and that wonderful doctor, I have a lot more of my life back.
  22. I found out that I have Hashimotos in the beginning of my POTS journey. My TSH was really high and I started synthroid but couldn't tolerate it at all. As time went by, I found out I have MCAD and that helped know so I could treat that and thankfully my TSH has remained normal despite my high antibodies.
  23. Hi.....I am very, very sensitive to food, odors, chemicals, other people like you and I'm very debilitated by it. I have MCAD. I would highly recommend that you do some researching into MCAD. These are symptoms of mast cell activation. Of course you should rule out carcinoid syndrome/pheochromocytoma....but after that, I would journey down the mast cell disease road. I did thanks to several wonderful people on this forum, and finally I'm starting to get some of my life back. www.tmsforacure.org, click mastocytosis and you can read about the symptoms. Feel free to pm me if you have any questions.
  24. So glad Kate you're getting somewhere...I just messaged you on FB by the way. I hope you got it It is my personal mission to get the word out about these mast cell issues....they are the root cause of ALL my problems according to Dr. Afrin and I BELIEVE HIM!!!!! My POTS/dysautonomia mess is a billion times better when I'm drugged up on benadryl. Not that I like being "drugged up" on benadryl but it makes my blood pressure/heart rate drama much more bearable. And I have a phone consult with Dr. Akin this Friday at noon by the way. SO EXCITED about it!!! I'll share what I learn
  25. Hi...I have it on my elbows, knees, inside my nose, and on both hands. Mine I have found is connected to my mast cell activation disorder. My husband has it and uses protopic and that helps him.
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