Mast Cell Disorders Forum

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http://mastcelldisorders.wallack.us/yabb/YaBB.pl Welcome! >> Introduce Yourself/Share Your Story >> What is going on with my body?! http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1356581685 Message started by sarahkay1111 on 12/26/12 at 16:14:45

Title: What is going on with my body?!
Post by sarahkay1111 on 12/26/12 at 16:14:45

Hi all,

I'm new here and I have so many questions. I am a 33 year old nurse with a husband and 3 girls. I have been healthy my whole life with no allergies until April 2011. My first health issue landed me in the ER in the middle of the night--I had taken melatonin for the second time ever before bed. I woke up to use the bathroom and when I went back to bed my heart was pounding out of my chest. My arms and legs went numb and I felt faint. This lasted 15 to 20 min on my way to the ER. I finally started coughing and slowed my heart rate down. This continued to happen to me over the next few months. They thought I had SVT (rapid heart rate). Then in July of 2011, my doctor put me on Prozac for my PMS symptoms ( I had a copper IUD at the time). The third day I took it, I developed a horrid lump in my throat and was told I had anxiety. The pressure in my throat felt like it would split it in half. I was given Ativan, but it didn't help. I would get the lump for 1.5 hours and could barely swallow. I stopped taking meds and continued to have trouble swallowing. I lost 10 pounds in 2 weeks. I had an endoscopy etc... Then in Oct 2011 I had an allergic reaction to crab cakes and the reactions took off from there. I ended up in the ER and got an Epi-Pen. I now carry liquid Benadryl, Epi, loratidine, and Zantac at all times. I was told I was having panic attacks by a few different doctors. I felt like I was losing my mind. I felt like my IUD bothered me and requested to have it out--I felt better within a week, but continued to have symptoms. Any anxiety I was having went away when I got the IUD out (I think the copper triggered anxiety). I have now lost 20 pounds in a year, and feel like I react to every thing. I have Raynaud's, swollen lymph nodes, irreg heart rate, near fainting episodes, occasional flushing, no rash or hives, and I had another anaphylactic episode in Oct (4th one so far). Since that reaction, I now eat only a handful of foods (eggs, mushrooms, co-jack cheese, cereal, bread, and cookies/crackers) without reacting. My throat swells right away if I eat the wrong thing and my heart flips out. I also have new reactions to smells--cooking foods, Aveda products, and cologne--my throat gets tight. I take Benadryl and Claritin and they help. I am going to the Mayo right now and the allergist tested me for Mastocytosis, but everything was on the high end of normal. Tryptase 10.7, so he will not give me a referral to a mast cell specialist. I saw a GI doctor for the swallowing issues and he thinks it is mast cell related, but did a swallow study (when my throat felt weird) and told me the diameter of my esophagus is half that of a normal one. He is doing an endoscopy next week for eosinophilic esophagitis (I was tested for that last Aug and it was negative--before I started having the food reactions). I requested a mast cell biopsy too, but he said no, because the mast cells would be there anyway. ?? I am calling him back tomorrow to request the mast cell biopsy anyway. What does anyone think of this? Does anyone have the same issues with their throat? I think it is the mast cells swelling in my throat and if they don't biopsy for them, they'll miss it. I see the allergist again in Jan for skin testing, but they can't do any of the spices I think I react to (red pepper, cayenne, cilantro). Is there anything else I could say or do to help my case, and does this sound like a mast cell issue to you? Sorry this is so long... And thanks for any response.

Sarah

Title: Re: What is going on with my body?!
Post by DeborahW, Founder on 12/26/12 at 17:16:02

Hi and welcome. Just a quick response from me right now because it is after midnight as I write this and I am tired. The reason the doc won't do a mast cell biopsy is because that is not how you test. We don't test specific areas of the body for mast cell disease. It is a full body thing. Kind of like being pregnant - you either are or you aren't.

The way to test for Masto is to do a bone marrow biopsy. You are in one of the few places which know how to do it correctly when testing for Masto. I have heard that it is hard to get a ton of Masto help from Mayo, though, due to their doctors being a bit closeminded on their requirements to diagnose it. Plus I don't know if they even acknowledge the condition of mast cell activation syndrome, which is treated by the Boston Mast cell researcher, Dr Castells and Dr Akin at Brigham and Young Hospital at Harvard.

So if you end up with a discouraging diagnosis from Mayo. (As in they don't know or don't think you have mast cell disease), don't give up hope. We can give your specialist names to check out if you need them. It is good that mayo is ruling out a ton of stuff for you. That will help you in your investigation.

Title: Re: What is going on with my body?!
Post by redbird on 12/27/12 at 04:50:59

Hi Sarah...
usually I leave responses to the medical experts on this forum and they are good and helpful but after reading your note a couple of times I wanted to say a couple of things...and please know that I just say things plain..no offense to anyone
test results show negative...it is not unusual for masto folks to get this statement in regard to results..we are different...now if we all had the symptoms the same..like mumps or chicken pox etc doctors and test would all show that..that is why in my opinion we are so hard to diagnosis...
now since I was diagnosis with a bio of my spots it was not hard to come to that results...you have masto they said..and thru the years I have progressed until I now know that I have systemic as well...and for a very long time I did just fine until one day BAM I started with anaphylaxis which is what you sound like in your note..so I am pretty good with that kind of stuff...heart pounding..throat closing ..etc ...that's me..so thankfully I finally got my meds working and now I am pretty stable..
I learned that I have 3 main enemies...heat, exercise and STRESS...I will always believe that my stressful job( not a nurse but worked in the ER, children and lots of home life baddies) set my masto off..how do you avoid stress especially with children job etc...I don't know but maybe you could find a place within yourself for that
smells are big for me...food sometimes can eat it and next time not..but when I get myself into a stressful situation I find myself stuttering and having to calm myself down so that shock does not hit..
now my meds work for me in my world...but maybe not for you and what Ms. Deb does might not work for you but it does for her...
please do not become discouraged..be aware of what is working for you..and since you are in the medical field you know that doctors sometimes miss the mark
redbird

Title: Re: What is going on with my body?!
Post by sarahkay1111 on 12/27/12 at 10:53:44

Hi and thanks for the replies. My triggers are mainly food, smells are a new trigger, mold is terrible for me, and cold is a trigger. The anaphylaxis with eating certain spices is the worst, most scary thing for me. Do the mast cell stabilizers help with that, and does the Zantac? (I don't take it regularly--right now it's mostly Claritin and liquid Benadryl). If you all have any advice as to what meds help the most with that, that would be great. I really like the GI doctor at Mayo and I think he will be a big help to me, but I still feel really sensitive after the reaction I had at the end of October. It's scary being home alone with my kids a lot because my husband is working out of state most of the time right now:( This website is very helpful and has the most information I've found so far. Thanks--Sarah

Title: Re: What is going on with my body?!
Post by PamH on 12/27/12 at 11:35:53

Hi Sarah,
Welcome, I am sure you will find the forum very helpful. To answer some of your questions...
Zantac is an H2 and yes it does help stablize you. I take 2 a day along with 2 H1(clairtin and allegra) They help to stabilize the mast cells right in the stomach. I started out taking 4 a day, but have been able to drop down to 2 a day.
My next advice would be to look into salicylates, if you have read very much on the forum you may have seen me ranting and raving about salicylates, if not I will save you the time. Salicylates cause me to go into anaphylaxis. Lots of throat swelling. Salicylates are natural in plants and those spices you speak of! Spices are especially high in salicylates! Here is a link:
http://salicylatesensitivity.com/forum/
Look under the food guide for list of foods. Most food contains salicylates, but they are in lists low, moderate, high and very high. On a good day I can eat moderate sals.
Unfortunately they are also in most of the products we use everyday. Shampoo, soap, mouthwash, toothpaste and fabric softners. Worst offenders to me are the fabric softners and mouthwash. A lot of the fragrances in products are considered salicylates. (imagine that).
Also menthol products and of course asprin products.
I would just recommend that you rule out salicylates you may just be slightly sensitive. I like you, woke up one day and bam! Anaphylaxis. I also had the your stessed out speech. I even had my throat stretched(that hurt) But with research and a specialist we figured it out.
Also, be sure to carry 2 epi pens. I don't know if you know about the rebound effect, but this happened to me in the ER and I needed more Epi, so carry 2!
Feel free to ask lots of questions!

Title: Re: What is going on with my body?!
Post by Anaphylaxing on 12/27/12 at 12:56:55

Haven't read all of the replies yet but from your initial post we are very similar. My triggers are food, scents, meds and started out of the blue.

Completely unscenting my life, stopped using ALL products, going on an organic rotation diet ( I started with low histamine), staying hydrated, getting lots of sleep and experimenting with MCAS meds with the help of an MCAS doc is what helped me. Also reading about those with environmental illness to learn how to cope with the scent issues.

I was essentially turned away from Mayo and not given any useful treatment options because my tryptase was normal. I would do whatever you can to get into a MCAS expert such as those in Boston or South Carolina or get your local GP to ask them for remote help.

Keep us posted

Title: Re: What is going on with my body?!
Post by sarahkay1111 on 12/27/12 at 13:07:12

Hi Pam and thanks for the info--I will keep an eye on the salicylates. I also had another question. Do people keep adding to the list of foods they can't tolerate or does it ever stop? I have eaten carrots this whole time, but since my last reaction, now both times I've tried eating them, my throat gets swollen and heart skips--with only a small amount. Makes me nervous to eat anything sometimes... Did the stretching help your throat? Also, 2 doctors cautioned me against using the epi-pen with the tachycardia I get with reactions (which confused me since tachycardia is a symptom of anaphylaxis), and once my b/p was 140/100, not low like normal for me. I think after reading other people's posts, that I should take the epi next time. Thanks again!

Title: Re: What is going on with my body?!
Post by PamH on 12/27/12 at 14:17:37

Sarah,
I don't know any thing about why you were told to be cautious about using your epi. You might have to ask here on the forum. I have never used my Epi(i should have a couple of times), so I'm not the best one to tell you when to or when not to use it. I have read if you feel like you are going to pass out then use it. I always use Benedryl Dye Free capsules for my 1st emergency med. then I would go for the Epi if the benedryl did not work.
Obviously, if your thoat is completely closed then you should use it. I know people that are sensitive to sulfite (found in the Epi pens) are still instructed to use it in an emergency. Always call 911 if you have to use the Epi.
Yes, the throat stretching(there is a medical name for this proceedure) did widen my esophogus, but it swells easily and I don't know if it was worth the procedure. I had this done before I knew my throat was swelling due to triggers. But, yes it did widen it! I was sore after the proceedure, I gargled with salt water for a few days.

As far as adding to the trigger list...You will read about people talking about a bucket theory. For example usually people start the day with an empty bucket, through out the day we fill our buckets with foods or scents. It can take all day or just a few hours to get a full bucket. If you are unstable it happens pretty quick! So your bucket is pretty full and you eat that carrot and low and behold you have filled it and its "overflowing". So does that mean you are now totally allergic to carrots? Maybe or maybe just slightly with tons of other things in your bucket. The reaction is the same either way. So you have to figure out your triggers. I was reacting to mixed veggies.(anaphilylaxis) This was before I had a DX or medication. Now I could probably eat mixed veggies with out a problem, if I was sure my bucket was not full and I was stable. You will eventually figure out what is going to tip your bucket.
I would highly suggest making a food diary. You need to write down EVERYTHING you PUT IN your body...not just food but meds can trigger too. Usually the inactive ingredients are the problems. Lots of us have trouble with the dyes with the numbers(red 40, yellow 10) oxide dyes seem to be safer. You need to write your reaction to foods after you eat and the next day. Somethings can have a delayed reaction.
You should look up the Elimination diet. It is horrible! You just eat a few thing for awhile then you add one food at a time, by doing this you can see what foods trigger you. I belive they recommend chicken and rice to start with. (with no spices) Horrible but very effective.
Just to let you know carrots are moderatly high in salicylates. :-/
I have read that sometimes during anaphylaxis that your blood pressure will go up before it drops, its like your bodies way of tring to help itself.

How does your stomach feel?

Title: Re: What is going on with my body?!
Post by sarahkay1111 on 12/28/12 at 13:21:46

Hello and thanks for the responses. I haven't had ANYONE to talk to who understands what this does to a person, so it's nice to have feedback. Anaphylaxing--thanks for the advice. My doctor has been great about getting help for me, so I will ask her if I don't get more help from the Mayo Clinic. Pam--my stomach is good so far. I don't have issues with bowels, upset stomach, or reflux. It's my heart and throat that seem to be the most affected, and the dizzy spells are scary--I got tunnel vision once when I was driving. We figured out our truck had an exhaust leak, and I was having a lot of symptoms driving. We got it fixed and it's been much better. I wanted to ask someone too--I did take Ibuprofen this whole time when I needed it, until several months ago. My throat was already reacting and I took both Ibu and Benadryl and now I don't know if it made me feel strange. The only thing I noticed that was different was that I took a smaller dose of Ibuprofen than normal because it made me feel almost high??? Has anyone else had that happen, and do you think I should not take it again? I also took penicillin for an infection in my gum this summer without problems, but I felt good at the time, and was taking Claritin daily. I've only had allergic-type reactions for a year and 2 months, so I don't know if things will keep getting worse. My urine prostaglandin D-2 was 950 and normal is less than 1000. So, I'm not sure if that means anything. Thank you all so much! P.S. I will do better with the food diary--I have one started, but rice sticks in my throat, so do you think potatoes would be good?

Title: Re: What is going on with my body?!
Post by lynda51 on 01/01/13 at 18:27:10

Dear Sarah,

I am not an expert, but your story is a lot like mine (I posted on July 19, 2011) for the first time. I don't know what I would have done without the help of so many who care on this forum and the guidance they gave (and are still giving me).

There is so much to learn and although many of us have a lot in common, we are different at the same time. Just as redbird said, what works for one may not work for another. But....the suggestions you get here are always excellent to pursue.

Like you, I get ridiculously high BP when I go into anaphylaxis. For some of us it is a compensatory action (reaction) as our body tries to adjust itself to what may eventually be a "crash" . Soooo....the epi works to settle the mast cells if you are either hypertensive or hypotensive. Does that make sense?

If you do have a mast cell disorder, the release of hundreds of chemicals into your system can make you feel like you are having a panic attack. Norepi and epi and histamine, and on and on (as you well know if you are a nurse), puts our systems into overdrive. I was diagnosed with panic attacks, like you, and now I know they are mast cell degranulations. I am not saying this is what is happening to you, I am just saying that it is possible that this is what might be happening.

Debbie has a heading as part of this forum that I believe says "Start Here". It would be very helpful for you to start there and do some reading (in all your spare time, right?) ;) It explains what tests you need to ask your physician to order to rule out other diseases that can cause similar symptoms to masto. Many of us are diagnosed by what we "DO NOT" have rather than what we do have, if that makes any sense. As much as I understand all of "this," a BMB is NOT done unless your tryptase is elevated or if an expert in mast cell disorders suspects systemic mastocytosis. **OK...forum leaders, please correct me if need be.**

I can relate as far as your diet. I have been eating 6 foods for just over 13 months. For me, I started reacting to soy and dairy and I kept adding to the list. I went to see an allergist and he told me he thought I was "allergic to the process of eating". In a way he was correct. Sometimes our buckets become so full that the process of digestion actually causes symptoms (i.e itchiness, dizziness, swelling, hives, stomach upset, bone pain, etc). It's not the actual food (although it can be). But that is why it is really important to keep a food diary like Pam suggested. Once we "collect" that information and understand what "sets us off" (what we call "triggers,) we need to avoid them. (At least until we know what is really going on in our body!) I am not sure how much you have read, but triggers are things that cause our mast cells to release their chemicals. So keeping a daily log is perfect. This can be a challenge because sometimes we have immediate reactions and sometimes we have delayed reactions. Perhaps some of the most knowledgeable leaders on this site can help explain that better than I can (brain fog is a big part of this as well and it's getting late). :P

As Ana stated, for most of us a low histamine diet is essential. For me, I also need a low tyramine diet (it's really a NO tyramine diet). Also, if your foods are becoming extremely limited, and it seems like they are, then it is important to rotate them if possible.

One comment you made caught my attention because I have dealt with it many times. You said you have tunnel vision. I am wondering what you mean by that. Could you explain it more? At times, when I look at things, the top part of my vision is just black..sometimes it is just a " black spot" and the rest is blurry. In my experience from talking to mast cell specialists and autonomic neurologists, they both have suggested the possibility of it being a mast cell degranulation and/or POTS. I don't want to overwhelm you, and this is a lot of information, but sometimes some of us with mast cell disorders can have (but not everyone!) an autonomic dysfunction. I think I need to stop there as I am not sure how much reading you have had time to do. You may already know all of this. :o What I do when this happens is immediately close my eyes (and keep them closed), lower my head, rest it in my hands or on my knees and sit or lie down.....take some deep breaths and stay as calm as possible. It is the scariest reaction I have as well. It can last up to five minutes or more and I can get panicky really easy if I don't follow "my" format. Again...we are all different so you may have a different "process" than I do that will help you more. But, it does go away! As Ana stated, get LOTS of rest, keep HYDRATED and HYDRATED some more! OK?

I (we) just want you to know that there are many of us with similar symptoms like yours. Again, starting from the beginning is REALLY important as there are other things that mimic mast cell disorders as well. It is really important they be ruled out. OK?

I do want to "ditto" Ana's comment about Mayo. I too was refused help at Mayo. I live fairly close to Rochester so it would be wonderful to be able to get help there. I have a confirmed diagnosis of Mast Cell Activation Syndrome. If you would like more information as to who I saw or information from anyone else on this site, we would be glad to share that info. with you. I have been fortunate to have been both to Charleston and Boston. It seems overwhelming, but not having the right answers to your questions and a plan in place that will help you the best way possible, there could be a lot of needless frustration. I am not saying there are not a lot of good docs out there...There just are NOT a lot who really understand mast cell disorders/mastocytosis.

Oh.....many of us can not take NSAID's (did I mix those letter up??)ugh... You may want to looks at the Mastocytosis website...tmsforacure.org This will be very helpful as well. They have a list of possible meds that are not well tolerated by those with mast cell disorders.

Again.....there are a lot of wonderful people on this forum and they will help you with any and all questions you have. Please ask anything you need to, OK?

Take care...hugs, Lynda

Title: Re: What is going on with my body?!
Post by lynda51 on 01/01/13 at 18:35:07

p.s. My diet consists of potatoes, summer squash, small amounts of chicken, granulated rice (hot for breakfast) made with water and small amounts of almond milk, sometimes sweet potatoes and sometimes not, and carrots. Once in awhile I can eat small amounts of fish. I weighed 141 at the hospital after my first "episode" in 2010. Two months ago after a bout in the hospital, I weighed 89. I am happy to report I have gained 10 pounds in the last couple of months....I dump lots of olive oil on my food and use salt too! Not to mention that wonderful cromolyn! :D It does help.

We wish you the best. Keep us posted!

Title: Re: What is going on with my body?!
Post by DeborahW, Founder on 01/02/13 at 06:13:39

What a helpful post, Lynda, stocked full of good advice! :)

Title: Re: What is going on with my body?!
Post by sarahkay1111 on 01/05/13 at 11:13:29

Hi Lynda and everyone. Thanks so much for the information. The tunnel vision I got was when I was driving, it looked like I was looking through a dark tunnel--the edges were all dark and it was light in the middle. I pulled over immediately and then my heart was in a very fast rhythm for a long time with lots of skipped beats. I have not had that happen again so far, but I did have a 5-10 minute episode where I felt like I was going to faint and had to put my head down (when my daughter was getting her braces). It feels embarrasing sometimes, all the things that happen, but no one else can see it... I live fairly close to Mayo too, and I went there for a swallow study on a day where my throat was swollen--I did not take Benadryl. They said my esophagus is half the diameter of a normal persons and so I just had an endoscopy on New Year's Eve. They found eosinophils, so now they are looking at eosinophilic esophagitis. I had biopsies for this in Sept 2011 when I had trouble swallowing all the time and it was negative. I will now do a trial of a proton-pump inhibitors and then have another endoscopy. My doctor says it does not explain all of my other symptoms and wants autonomic dysfunction looked into. I don't know what to think because he said if there are eosinophils in my throat, there will be mast cells too. All of my symptoms fall under mast cell disorders, and no other disease explains everything. If it's not a mast cell issue, that would be great :D I am going in for more allergy testing on Monday, so we'll see. I have been keeping a food journal and will watch it closely. Thanks for all of the input. --Sarah

Title: Re: What is going on with my body?!
Post by sarahkay1111 on 01/05/13 at 11:20:45

P.S. I try to drink water all day anyway, but why does staying hydrated help? Also, why do some people say they can only eat very over-cooked veggies? Thanks!

Title: Re: What is going on with my body?!
Post by missmarple on 01/05/13 at 12:55:34

Ooh i would like to know that too!

Why do we have to drink water?

And why over cook veg?

Title: Re: What is going on with my body?!
Post by Riverwn on 01/07/13 at 11:36:52

Im so sorry youre going through the ringer. So very much of what you say, rings a bell with most of us.DRs who dont know about Masto love to lay the blame on us and say it is in our head. Sorry hon, do NOT listen to those DRs.

Good girl you are on the right meds--You might need the doses tweaked and you may need to add a few things, but you are off to a very good start. Im impressed! Time to take that Zantac regularly. Most of us take 300 mg twice a day. Talk to your DR about it-- Remember Zantac helps on two counts--It is an old time antihistamine AND it also helps with the tummy being out of control. You also need a regular routine of H1 and H2 antihistamines--at least every `12 hours.

One thing you can do if you worry a food will set you off--put a piece in the side jowl of your mouth--dont swallow just keep it there for maybe 2 mins--If you get tingling or other reactions, it isnt a safe food for you. This doesnt work with all of us but does help the majority.

I wouldnt have my throat stretched--You need to view your Masto as a disease that involves swelling--especially when you target an area of your body for any pressure related activity--Your body will respond by swelling, understand?? Keep cool water near you, eat slowly and take your meds routinely.

I think you need to be on singulair to help that throat. Ask your DR to Rx 1 mg twice a day and see if that doesnt help. I have it too and yes, I cant swallow sometimes and even have had food bolus. Just remember to eat slow, chew well with a lot of water.

I also have Sjogrens Syndrome which makes me extra dry and that irritates the situation. If you have this many reactions, you might want to talk to your DR about getting an emergency supply of Prednisone so you wont get into the situation of having to call 911.

Do NOT let those 2 DRs advice scare you--they are wrong. With us, that high BP is spiking up right before you shock, right?? Your body is merely trying to protect you from crashing, see?? Using your Epi will NOT hurt, it should help you. That is exactly why you have your Epi. Lynda is right.

If you feel you will pass out before medical help can get there, then take the Epi! It just might stop what is going on. Make sure you tell someone near you, that you took the Epi , to tell the EMTs if you cant.

Pams advice about food and diary blogging whats going on with you, is excellent.

Irritation to any part of your body means swelling--including your throat so that is why so many people say they have to cook their veggies very soft. As far as hydrating, I personally go around with a bottle of water everywhere I go. I found out 3 months ago, that I have Sjogrens Syndrome, which dries me out, so I need to replace it often. This does NOT mean you will get Sjogrens. What Im trying to say is, they call Mast Cells the "Guardian of the Immune system" and once our mast cells are abnormal, the "gates" are open for getting any other autoimmune disease. For example, I have POTS, IA, Angio-Edema when I shock, Hematological variant (I bruise under my skin when I shock), Sjogrens and Reynauds. Nothing life shattering, just irritating LOL. I hope this helps!
Hugs
Ramona

Title: Re: What is going on with my body?!
Post by lynda51 on 01/07/13 at 17:13:17

Hi Ramona, Sarah and all,

I learned something new (again)....I never thought to put food in my mouth and hold it there for a bit to "test" it. That's sooo much better than swallowing it and having even more symptoms! Thanks Ramona :D

Sarah, I wasn't sure how to answer your post about tunnel vision. Because I have ANS dysfunction as well as a mast cell disorder, I honestly don't know if the autonomic disorder or the mast cell disorder causes the tunnel vision.....I think mast cell specialists would say it's mast cell and autonomic neurologists would say it's ANS dysfunction. I am trying to "learn" which reactions are from what, but the two are so interconnected at times that it is not always possible. Ramona, do you have an opinion about this? I thought it was mast cell until I recently read an article about POTS and it specifically mentions tunnel vision as being a symptom of POTS.

Do any of you that have Masto and do NOT have POTS, experience tunnel vision?

In answer to your question about hydration Sarah and missmarple, some of us with autonomic disorders have low blood volume. Mast cell disorders can also cause vascular problems. Some patients have blood pooling in their legs. So the more hydrated you are, the better your circulation will be and the less symptomatic you will be. (Again, I am not a nurse or doctor so if I haven't stated this correctly I request correction from the forum leaders....please) ;) All I know is, if I don't drink tons of water in a day, I will have more tachy, more skipped heart beats, more difficulty thinking and get really dizzy.

I am not sure how old your girls are Sarah, but there is a U Tube video posted on here from a mom (sorry I don't remember who it is or where it is posted)....but she has been so kind to share teaching her 5 year old son how to administer epi if she needs it. Pretty amazing....

I hope and pray it never comes to that, but IF you do have a mast cell disorder, you can never be too prepared!

Take care and keep us posted on how you are doing.

Hugs, Lynda

Title: Re: What is going on with my body?!
Post by Joan on 01/07/13 at 19:57:47

There's a new epinephrine product that is like an epipen, but it has verbal instructions on how to use it! The voice goes step-by-step through the entire procedure, beginning with taking the cap off. This would be the perfect type for a child to be able to administer.

My son was 6 and my daughter was 11 when I started getting anaphylactic reactions. Both of them had to learn how to give epi and to call 911 if Mommy ever got red and sick. It was heartbreaking, but also very comforting to know they could handle a mast cell emergency.

Hope you never need it, though!

Title: Re: What is going on with my body?!
Post by Anaphylaxing on 01/07/13 at 22:07:54

I was down to a couple foods for a long time and it seemed like any change in my food, air, med or emotions would cause anaphylaxis. It took a super strict elimination rotation organic diet--reading about chemical sensitivity and environmental illness for tips with coping with the scent side, making med changes one at a time and slowly, getting lots of rest and trying to limit stress for me to make even baby steps forward. Had to get rid of my old clothes that had perfume and scented detergents on them and start from scratch. But every step forward, or even sideways is better than backward. Do not give up! You can do this! Each one of us is different so keep checking in and picking everyone's brains for ideas.

Oh and wow did I leave out having my doctors work with a MCAS expert? Wow that was silly of me. Key step as they were able to get me on some meds to crank the reactions back slightly so I could start to figure out what was setting me off.

Hang in there!!! :) :) :)

Title: Re: What is going on with my body?!
Post by missmarple on 01/08/13 at 10:04:12

Thank you Ramona and lynda for the explanation about water and veggies. I have POTS as well as MCAD and I know I become much more POTSy if I am dehydrated - dizzy and forgetful (even more than normal!). Thanks!

Title: Re: What is going on with my body?!
Post by sarahkay1111 on 01/08/13 at 11:36:29

Thank you all for the great tips and support. I saw the allergist again yesterday. He is referring me to Dr. Weiler, whom I have heard about so I'm glad to see her, but the doctor I saw feels I'm taking Benadryl for anxiety (he put it nicely), but I'm so frustrated that you have to prove to so many people that you're not making things up. Who would make this disease up??? I have been a nurse for over 10 years and never saw anyone with these symptoms. I know anxiety is a nice umbrella to put everything under, but at least I'm getting somewhere. I will have autonomic testing too. I was wondering if any of you have had to take proton-pump inhibitors like prilosec or protonix. I HAVE to take them for a month, and I just started. It is making me really dizzy and my throat hurts--it's making it harder to swallow. Anyone have an idea which one works the best with the least amount of side effects? Thanks again! Sarah

Title: Re: What is going on with my body?!
Post by sarahkay1111 on 01/10/13 at 07:58:12

I was also wondering how you are supposed to cook for your family when you react to smells? I had a reaction last night when making roasted veggies with garlic. I had to go to the ER for throat swelling, difficulty swallowing, and hoarse voice. I think the smell of garlic has been bothering me. What do you do to cook healthy for your family?--I live in Minnesota, so I can't always open windows. Thank You--Sarah

Title: Re: What is going on with my body?!
Post by DeborahW, Founder on 01/10/13 at 09:57:17

Oh this is sooooooooooooooo my question to answer!!! [smiley=vrolijk_26.gif]

I totally trigger from smells, and GARLIC and ONIONS!! They aren't even allowed into my house in any form! I am better now with my meds protecting me, but those odors (and certain other ones) will start up my triggers. The garlic used to be my worst, though! AVOIDANCE is the key....

Title: Re: What is going on with my body?!
Post by DeborahW, Founder on 01/10/13 at 10:00:26

I actually find that I now have an aversion to many smells of all the foods which will make me ill. I often wonder if the body develops a natural defense mechanism by making you dislike odors and foods of things you previously liked before your mast cell disease popped out!

Title: Re: What is going on with my body?!
Post by sarahkay1111 on 01/10/13 at 13:02:21

Hi Deborah--The cooking smell triggers are new for me and so is the cologne. You're right--I instantly dislike the smell of some things now and try not to breathe it in. I am only taking Claritin once daily--do you know if you can take it twice? I've also heard people say Allegra works well for smells... I haven't tried that yet. Thanks-Sarah

Title: Re: What is going on with my body?!
Post by Riverwn on 01/10/13 at 13:38:58

I would say that tunnel vision itself is usually a sign that someones blood pressure is abnormal and they are in danger of passing out. It can be caused by many things--dehydration yes--also; meds not tweaked right, moving too fast especially upon waking, POTS does this, and masto itself causes neuro and vascular symptoms. The reason isnt as important as remembering to sit quickly if you feel dizzy and let people around you know, you are feeling dizzy. Take care of YOU.

Sarah, dont let that DR get you upset. Its HIS problem that he doesnt understand masto and his ego wont admit it so he throws blame on you. Im so sorry for that. There are wonderful DRs out there that treat masto and are great people too--we just need to find the right one for you! Take Benadryl anytime you feel a need--you are the expert for you.

I take Prilosec and it helps me quite a bit. Ive never had protonex so I cant advise you on that one. I would say that any med that makes you feel bad--stop taking it. I would also tell you anytime you start feeling weird, take a rescue med. I have to remind myself of that one a lot LOL. Hope this helps!
Hugs
Ramona

Title: Re: What is going on with my body?!
Post by Riverwn on 01/10/13 at 13:43:32

Im slow on answering and then I read posts that came while I was posting lol... I do react to smells quite a bit--but so far Ive been lucky and most of the smells Ive reacted to are chemical in nature--floor stripper, wax, something that they spray on flowers at a florist shop. Youve got it hard trying to cook and having reactions. I would advise you to use a fan in the kitchen (that helps me) , dont cook with the things that trigger you often and take your rescue med!
Good luck :)
Ramona

Title: Re: What is going on with my body?!
Post by Riverwn on 01/10/13 at 13:53:54

Sarah I think you are walking a dangerous tightrope in only taking one med. Now Im not a DR but if I only took Claritan, I would be in the hospital! You might want to ask some people what they take and how often just to compare and get some idea of what most of us need. I will tell you that I take Allegra twice a day and it made me feel wonderful. here is a sample from one person--me!
I take;
Allegra twice a day
Zantac 300 twice a day
Claritan 1 in the am
Zyrtec 1 at noon
Vistaril 25 mg 3 times a day
I take Neurontin 3 times a day for neuropathy, and other meds for my blood pressure and diabetes.

My emergency supply of meds; is 2 Zantac, 1 Zyrtec, 1 Vistaril, a bottle of Benadryl, an EPI Pen, and and a bottle of Prednisone.

This gives you a bit of an idea of one person. Ask some more people. And ALWAYS ALWAYS, Talk this over with your DR before making changes.
Hugs,
Ramona

Title: Re: What is going on with my body?!
Post by lynda51 on 01/10/13 at 18:02:32

Hi Sarah,

I am so sorry you are having so many reactions all at once. Please remember that things WILL get better. All of us were at the same place you are at, at one time or another! The most important thing is to listen to your body. You know yourself and you know that something is not "normal".....and as Ramona said, "Don't let any doc make you feel like it is all in your head or it's "just" anxiety". Many of have experienced the same thing. :( You are right...who would want this disease anyway?? You only have to read all of our posts to know that you have pretty similar "reactions to triggers" like many of us have. OK? Head up high ;) As a nurse I know you are used to making tough decisions and being assertive. YOU CAN do this! And there is lots of help and support here!!

I know there is A LOT of information coming at you right now, but remember to:

1) ONLY change ONE thing at a time.....so if you need to take two PPI's, start with only ONE. If you do ok on that one, then add the second one. That way, you will know which one (or both) are causing you to be reactive. I take Nexium now, but have been on other PPI's and several of them caused stomach aches, cramps, etc.

2) When you start anything new, take as small of an amount as you can and work your way up to the optimal dose. If you have a capsule and it is a time release, then you can't open the capsule but you can drink tons of water with it when you take it (this is what I would do, but once again you need to check with your doctor). Sometimes we are so reactive that everything sets us off. Yet, sometimes new medications are a trigger and will always be a trigger so start really slow. And as Ramona said, stop taking it if you feel worse and call your doctor.

One thing you may want to be aware of is that some of us react to the dyes and fillers in medications. I am NOT saying this will happen to you, but if you are having a lot of reactions to new meds, you may want to keep track of the "inactive" ingredients in your meds in case there is one common denominator. I know it seems overwhelming to have to do so many things! If you have a close friend or spouse or parent that could help you with this, it would take some pressure off you as well.

My daily meds: Pepcid 20-40 mg. 2 - 3 times a day. I have not been able to find an H1 blocker that I don't react to and my docs are still working on that with me. I also take Gastrocrom, 8 vials a day. I take alprazalam (Xanax) as needed and to sleep at night. My emergency meds are: prednizone, twin jet epi's, Xanax, an albuterol inhaler and extra Pepcid. Many patients take liquid Benedryl as it is fast working. Please ask, at what dosage, as I am not sure.

If you have not taken a lot of medications in your life, and you find you are reacting to new ones, you can also try to have them compounded. Then you are getting the "pure" form of the medication and you can choose what it can be mixed with..... something you KNOW will not "trigger" you..... like rice flour or potato flour, etc. If you still react to it, then you know it is the actual medication (and not the fillers or dyes) that is the trigger. Then you will need to avoid it.

I hope that helps! Let us know how your appt. goes with Dr. Weiler.

Take care....keep us posted!

Hugs, Lynda

Ramona, thanks for the information about the tunnel vision. That makes a lot of sense. As I remember back to my episodes, I know one time I was squatting while weeding in the garden....way to cut off blood flow....haaaaaaa Can I claim brain fog for not putting that ONE together?? ;D

Title: Re: What is going on with my body?!
Post by sarahkay1111 on 01/11/13 at 12:03:16

Hi Ramona and Lynda,
Thank you so much for the support. Yes, Ramona--being on one antihistamine is putting me in the hospital. It's weird because I feel like I'm imagining things sometimes--like is my throat really swelling? But the ER nurse heard my voice and said, "You should have taken the Epi!" This is the first reaction I have done a tryptase and 24-hour urine for, so we'll see if there are any results. (I had a kit at home for the 24-hour urine from Mayo). I had to take Benadryl and the GI doctor told me it would affect my levels. Oh well--I'd rather not die to prove a test. Ramona, I was wondering if when your throat swells, if it ever feels like an obstruction is in there? I coughed after my throat was feeling thick, and it felt like something got stuck in my throat and it got worse from there. The Benadryl really helps--sometimes I just have to take a teaspoon and the swelling goes down. Thanks for both of your input on the PPI's. The 3rd day I took the Protonix, I started feeling fewer side effects--I did start slow and I think like you say, that helps. I am not a medicine taker and have always been sensitive to meds. I also took a little prednisone after the 24-hour urine was done, and I think that is helping me. I had to post-pone my new job today, until I can figure out what to do. Thankfully I have worked there before, and my old boss is very understanding. My position is on hold till I'm ready. I think I really need a mast-cell stabilizer!! Thank you so much for your encouraging words--I really need them. :)Sarah

Title: Re: What is going on with my body?!
Post by Riverwn on 01/12/13 at 09:33:47

Sarah, youre doing great at this--it takes time and it isnt easy this being such a rare disease for us to know exactly what is right to do. You as a Nurse, thats a bit a trouble too LOL.. We were always taught that the DR knows best--sometimes that isnt true, it depends on if youre talking to a mast cell expert or an MD who wants you to go away because you scare them.

Hon, we need to take more meds than the average person and that one is so very hard for me. We tend to get ourselves in trouble because we are always thinking, "I shouldnt be taking all these meds, I will over-dose!" No-no, You MUST take the meds that calm your reactions and keep you safe from going into shock.

Its hard for us to see ourselves as the patient, I truly understand. My job let me go saying, "Youre sicker than the people you are treating." and it was true. I still have a bit of depression over that one. My identity as a nurse was how I valued myself and suddenly I had no value :( I had to learn who I was all over again and sometimes I still have a good cry over it. It helps to reach out to others. I never would have made it without this board and all of you. We need each other and are truly the real life "life-lines" to this weird rare illness.

Now about your throat--your own "feelings" are correct, dont question yourself. You can feel either way--like an obstruction or a thickening or even just an irritation that makes you want to cough and cough. Do exactly what you did by taking your Benadryl, and if it ever doesnt work for you, follow it with a dose of Prednisone (ONLY if your Benadryl doesnt work. It will save you from a 911 trip to the ER :)

You have excellent sense--follow them! Youre gonna do fine :)
Hugs
Ramona

Title: Re: What is going on with my body?!
Post by sarahkay1111 on 02/27/13 at 12:05:38

HI--How has everyone been? I have been busy at the Mayo Clinic. I did get diagnosed with Eosinophilic Esophagitis for sure, but it's only a piece of the puzzle. I saw the allergist who specializes with both Eosinophilic Esophagitis and Mast Cell Disorders and I am left with more questions and NO answers. She said I do not have a mast cell disease since my urine and tryptase were normal. She told me to follow the diet for Eosin.Esoph., but 3 of the foods on there are my safe foods (so I don't know what I'd eat). Other than that, she had NO advice for any of my other issues and told me I just had all these seperate things happen to me and they are not connected in any way. I know everyone says you don't need a diagnosis if the treatment works, and it kind of does, but the one thing it's not helping is the smell reactions. If I am exposed to a stronger smell for more than an hour, I start having a reaction. The advice everyone gives here is great, and I feel the thing that has helped me the most is following the low histamine diet ;D I actually feel semi-normal. I thought I was eating okay, but I was having reactions everyday. I am taking Allegra daily, Zantac 3 x's daily, and swallowed Flovent for my espohagitis. The Benadryl still helps, but I have used it much less since starting the Zantac and Allegra.
--I am wondering if a mast cell stabilizer would help with the smells? Does anyone have advice on this?
--Also, how far do I go???--the expenses are adding up and I don't even know if any of the other doctors would see me. I think my GI doctor would possibly prescribe a mast cell stabilizer for me since they can use Cromolyn to treat Eosinophilic Esophagitis too.
I do feel very limited in my life, since a lot of things involve smells, and I would like to improve the quality of my life a little. I'm not sure if this is the right spot to put this post in, but I can repost it too.

Thanks! Sarah

Title: Re: What is going on with my body?!
Post by PamH on 03/02/13 at 19:43:19

Hi Sarah!
Wow sounds like you have found some important stuff out! I think the cromolyn would help. I read your information and did some looking up on the Eosinophilic Esophagitis. I find it very interesting because I have throat swelling so much. I really think I had a reaction last night due to a combination of chocolate and my husbands garlic breath! Sounds crazy huh? But it turned into a scary event. I was fine after benadryl.
So I was trying to understand if there is any connection with mast cells and this EE. I am a bit confused because to me it seems like a symptom of something else. Can you explain that to me?
Your problems with smells, fragrances and improvement on H1's sure sound like mast cells to me. Cromolyn is a mast cell stablizer so I would think that stabilizing your mast cells would cut down on the EE events, but like I said I am still a bit confused. I wonder if some of the EE meds would help me. I did see that they use the inhaled cromolyn, most of us are one the liquid or oral cromolyn, so you want to let the doc know which one you are wanting. The oral cromolyn is considered an orphan drug and is not available at every pharmacy.
I look forward to hearing from you and understanding more about EE!

Title: Re: What is going on with my body?!
Post by sarahkay1111 on 03/06/13 at 10:35:14

Hi Pam,
I did wonder about that with the rest of the people that have throat issues too. I guess eosinophils and mast cells go hand-in-hand in that if you have eosinophils somewhere, there will be mast cells, but if you have mast cells, there may not be eosinophils (my understanding). But the eosinophils in the tissue in the throat are not normal--mast cells are. Eosinophilic Esophagitis (EoE) is a new disease only being diagnosed since the 70's and 80's. It's symptoms usually include trouble swallowing or food or meds getting stuck (I had an Excedrin stuck in my throat for 3 hours once when I was 25). The swelling in the throat and "tightness" is an allergic reaction to food or smells--they don't know much about the smell reactions yet from what I gather. The weird thing is that I didn't have trouble swallowing food previously--just large pills or round pills. I also didn't have the allergic reactions until about 1.5 years ago. They think I've had EoE for decades. The doctors at Mayo say it doesn't add up... Also, I called back and left a list of questions for the allergist I saw at Mayo. She now says I may have a mast cell activation disease too, but that's all she said to the nurse that called me back. That's it--nothing else. So I think I will call my GI doctor back--he's great. I think the swallowed Flovent is helping--hard to tell because the low-histamine diet is helping a lot. They have an elimination diet for EoE too--if you look it up online, it has a lot of information if you wanted to try it. Are you on a low-histamine diet? Let me know what you think. Have you had an endoscopy or a swallow study done? I had a swallow study a year ago that was unremarkable, but my doc at Mayo said the radiologist needs to be really good at what they are doing or they can miss the long-segment narrowing (if someone has it).
Take care :) Sarah

Title: Re: What is going on with my body?!
Post by PamH on 03/06/13 at 18:59:13

Sarah,
Yes I am on a low histamine diet and a low salicylate diet. I have found the histamines cause diarreah and the salicylates causes anapylaxis. Only took two years to figure that out! :P I had an upper gi and my throat stretched before I knew what was going on. My throat felt tight because it was swelling. That was not a lovely proceedure and it was probably completely unecessary. The things we go through to figure it all out. I had a pill get stuck the other day, but it was because I was going into anapylaxis! :D I generally don't have a problem only when I am swelling. So your thoat is narrowed all the time? or just when you have a reaction? Keep me updated on how you are doing!

Title: Re: What is going on with my body?!
Post by sarahkay1111 on 03/07/13 at 04:34:30

Hi Pam,

How are you? My throat swells with reactions to food I eat or very strong smells--with the smells I notice the main problem is that my heart rate increases and stays fast for a long time until I take an antihistamine. Have you noticed a difference with smell and food reactions? The GI doc told me my throat is narrowed all the time and probably has scar tissue--he said the amount of swelling in it would have taken decades to get to this point. My throat was reacting the day I did the swallow study, which I think made the swelling worse than normal (which is what they wanted to see). When I take Benadryl, that feeling goes away, so I think that the swelling isn't always that bad, unless I'm having an issue with what I'm eating. I have trouble swallowing food with reactions--it gets thick and tight feeling. Then gets better after an antihistamine. Is that how yours is? Also, I remember reading that you have mold in your house, but not your room. When we were living in our last house (that we found out was full of mold), I was reacting constantly and had a lot of anxiety for no explainable reason. I was frequently dizzy and had several episodes of shortness of breath (especially with minor activity). Do you think it could be contributing to all of your reactions? I know as soon as we moved out, I started feeling better. 2 of my girls were also sick from the mold with skin and respiratory issues, but are great now. Let me know what you think and hope you're feeling well :) --Sarah

Title: Re: What is going on with my body?!
Post by PamH on 03/07/13 at 12:35:24

Sarah, that is the Million dollar question. We have considered moving, but with market the way it is we would easily loose $20,000. Before I was on mast cell stablizers, we even looked at putting me in a cheap apt. just to test that theory. If we knew for sure that I would regain my health, then we would just eat the loss and start over. But we don't know that It wont be the same reaction at a new house. The mold we found was in the duct work, so when the air or funace came on mold spores were thown everywhere. After fixing the problem we went through and got rid of anything that could not be washed with a bleach and water mix. We got rid all cloth furniture, our matress and box springs, any house hold decorations that couldn't be washed. The we washed everything walls, lights windows etc. We blocked off the duct work in our bedroom and use a giant air cleaner and I refer to this room as my "clean room". We have an electic fireplace we use for heat and a window air unit for air conditioning. I still have to spend many hours a day in the clean room. Spending time in the rest of the house does tend to swell my throat. I live a completely abnormal life in this room. We also have pets, and I think they probably contribute as well. They are not allowed in the clean room. Same thing...it would break my heart to cart off the animals and then find out they were not at problem after all. I really do feel stuck in the situation. During the worse part of my illness we stayed in motels and used most of our saving, so I feel like my illness has caused such a finacial strain that I don't want to insist on moving. I have applied for disability and my hearing is coming up soon, maybe if I win I can use the back pay to help get out of this house. There is so much to do in order to move though, maintenace jobs that we have put off due to the costs. For now the "clean room" is my refuge. At least I have that.
I too swell with smells and certain foods. With the smells I first get a feeling in my stomach which I think are mast cells degranulating, then swelling. I can't go to church because of the overwhelming frangrance. I have trouble go out in crowded public places to. It is just overall better for me to stay at home. Which takes me back to the million dollar question would I be better in a different home?
Interestingly our reactions seem to be simular. They never tested me for the EE. But like I said they did streach my thoat, after that It felt like I could swallow a mac truck! I don't think I have a feeling of tightness unless reacting.
I think if I won publishers clearing house I would move in a heart beat...but right now I just don't think the finacial strain of moving would be a good thing. So I will wait and see!
Where was the mold at your old house? Was it hidden somewhere?

Title: Re: What is going on with my body?!
Post by sarahkay1111 on 03/11/13 at 08:14:47

Hi Pam,

I'm so sorry to hear all of that. I wish you luck at your hearing. We had mold in between the bathroom upstairs and the bathroom downstairs--it had been patched over, so we actually don't know how much was in there. There was also black mold on the windows in the winter. We were only there for 9 months and all of the shoes on my bedroom closet floor were growing white mold on them! All I know is within 2 weeks of moving out, I noticed a marked improvement in my health and stability. I didn't feel better when we left the house for a few hours--it took time after being completely out of the house for me to feel better. I have a dog and cat and they are fine. I'm sure you know this, but the more often you bathe them or wipe them down, the less dander there is (my 5 year old is allergic to animals, but does well with our pets). It's so frustrating to have to wonder what's causing symptoms. I know the low-histamine diet helps, so does Zantac and Allegra. I think the swallowed Flovent is working. I was able to go to my nephew's wrestling tournament this weekend and they had tacos there (never would have been able to stay in the building 1 month ago). I do have to be REALLY careful with what I eat. I think our reactions seem similar too. You should ask your doctor about EoE... It sounds like you did a good job getting rid of the mold. I really hope you feel better soon and good luck with everything Pam!

:)Sarah