Hi Josie - I have my laptop back after having some virus mess things up.  I am still having some problems though.  

I understand the pain you get with your stomach swelling.  I get that during anaphylaxis and it is horrible.  Very painful.  If you have that sort of pain weekly, I very much feel for you.  I do have nausea most of the time, but extreme pain during anaphylaxis only.

I found your comment on using Singulair very interesting.  I do not have airway swelling so I don't know if I could get that prescribed to me.  However, it makes sense that if your muscles aren't getting enough oxygen, then you're going to have pain - which I do often.

I've had no luck with Gastrocrom.  It just adds to my nausea.  

I was thinking of asking my doctor about doxipen for help with sleep, pain and H2 blocking.  Is doxipen a tricyclic?  If so, I guess that wouldn't be good for me.

I too must keep cool.  I dread summer coming if it's going to be anything like last summer.  

I do have some apprehension around eating foods.  I eat mostly bland foods.  I miss having tomatoes and spinach and tuna fish.  I eat a lot of whole grain carbs but I want to add some fruit and vegetables back in.  Any suggestions?  I tolerate fresh greenbeans and roasted carrots.  I'm wondering if I cook up some chicken and freeze portions right away, if I could defrost them another day and heat them up safely.  

Thanks so much for your input.  I'm sorry about your doctor's appointment - I have had the same reactions too - especially from my primary care person.  I hope you can easily get all your documentation.

Take care

Hi Josie,
I get so tired of not eating a thing on the histamine list. Its not that I will ignore it but Im letting myself have small trials of different things that I havent reacted to in the past. Its so nice when I find I still dont react to some things.. but I find I react stronger to others.. like cabbage..cant do it period and I used to love it so.. raw in salads and steamed.. it doesnt like me now  and the tomatoes? never cared much for them but.. I adore italian foods and I am learning to make it with no tomato sauce, no spicy herbs.. and Joan gives me such great ideas about cooking mexican goodies with no bad stuff in it.

Ive been doing alot of thinking... Im really really tired of the medical establishments attitude towards a disease process they cant understand. I get asked, "Why do you have pain?" it makes me want to tell them they arent doing their job, have they forgotten how to do research on an illness?? But I sit and smile and explain. I just think to myself that they show their lack of concern when they dont bother to look it up. Werent we different as nurses??? I hope we werent as lazy, as low in compassion, as unprofessional as most I meet now..

I am thinking more and more of writing an article for some kind a nursing journal.. Nurse to Patient type of thing.. I think we have some issues that the average person doesnt.. like guilt using any medication for pain. Unless we see the reason for pain with our eyes, it is always suspicious.. even when I am alone. I question myself twice.. do I really need that pain pill?? Then I get angry.. I ask myself, what would I tell my patient and why dont I advocate for myself like that?? Just thoughts that have been going around in my mind.. do you ever think about that??? Well time for sleep for me...
Have a peaceful night,
Ramona

Tess you sound like me when I first started having the masto bone and joint pain. Mornings are the worst...I take my pill and dont move til it kicks in.. a few tricks ive learned..

When you other meds (antihistamines) are well balanced, it doesnt take me as much medicine to stay out of pain. Prednisone definitely helps but you dont want those side effects--save that for emergency reactions only.

Sometimes I use warm castor oil packs with a heating pad set on low to areas that are most painful... that helps me. (natural medicine).

I also have to keep a balance between not moving cause it hurts and moving cause I will get stiff and it hurts worse LOL...some exercise helps even with the pain. Slow and steady.

I love those ideas for food!! You all make me drool LOL..
Have a great day  
love
Ramona

Hi Ramona ,

No we were never lazy or unprofessional . We both prided ourselves on our standards .

Strong analgesia , yes , I held off it for months because I couldn't be ill enough for such meds . I needed to know what my pain was for and how it will go away . The thought of needing opites without a terminal or major condition just didnt fit ...............................................................

So I spent 8 months in teeth gritting pain with every movement , no sleep and everything that comes with sleep deprived unable to think Jose .

Then I was admitted after 2 biggies in a week and i met a pain nurse who could see I was in pain and treated it . I cried when she came to me beacuse i was so relieved that i had finally got to someone who would help me .

Dispite this others have treated me badly . 3 occasions going overnight in hopsital without oxycodone . Awfel . I didnt have my pain meds with me , it was late and they didnt check until the morning .  One of the nights they finally gave me oromorph , my legs were shaking and didnt stop until the pain was treated .

I find it hard but wander how i would have treated me ??? with no documented cause for such pain ( in the understanding of most medics / nurses ) . the nursing statement of a patients pain is where they say it is , when they say it is to the extrent they say it is , seem only to be truely held when the cause of pain is clearly documented .

I am working on anew chronic pain protocol for assesment as i found chronic pain to assess in acute care . So i would love you to read it when im ready . i am nearly there .

I think all student nurses should experience chronic pain ( low levels tens machine for 24 hours ) to get an idea of what we are dealing with .

I think we are different in our knowledge and in essence knowing that many times we know more about our condition than our docs and the nurses caring for us . I have struggled about were there knowledge should be . I have experienced many levels for absolutely lovely to scary . The best I would say is those who may not have understood but were happy as long as i was well and they listened . These have tended to be older , experienced nurses . The worst a nurse who didnt listen when i said i wouldnt get to the bathroom and back . i got back , but struggling to breathe with a tachycardia of 180.  The boss nurse apologised for her .

Another was a nurse who didnt know another patients meds , so didnt give it , then told me no more antiemetics (sickness) were available . i knew they were . i tried to wait and see if i could settle down , as i was rethching continually . half an hour later i asked her to ring the doctor as i knew there were other meds . amazingly a doctor appeared .

Some moments have come because I dont look ill and disabled . which have been bitter sweet as i think a time will come when i dont get asked . ;-(

My first care plan was hard . I write them about other , i shouldnt have one about me . I call it the book .

Tess ,

Pacing , as ramona describes , exercise to stop ceasing but not to induce pain , is hard to get right . at first i thought i was pacing , but i was pacing at the old jose standard not the new jose standard .

I had a nursing asistant tell me to slow down as i was doing too much and making myself ill .

For me it was feeling lazy which was so hard . i had to sit and leave stuff . Then one day it twiged . it was the realisation that a biggie followed a good day . I was doing too much and overflowing my barrel . Since then I have followed my body and it has helped .

I now go one stage further than i want to ( within my illness level ) . So I may want to wheel both ways to the toilet . but I will walk one way ( back ) .

A check of nutrients is vital for any of us restricted diets blanotheapy is the posh word for warm long baths xxxxxxxxxxxxxxxxx

many hugs xxxxxxxxxxxxxxxx
Jose

Hi Ramona ,

Cool , i will and am .

Im a quiet pain person which just confusses them . When I had an abcess i was virtually silent ( very un usual for me ) I knew they thought I was attention seeking . Then I had to put on a gown for theatre , omg , owwwwwwwwwwwww , they saw that on my face .

I am posing the question , that pts in chronic pain may have less dramtic / no change in their obs due to the long term nature of their condition . that the body cant maintain the high state of pain in heart rate and blood pressure , so do not have classic obs changes until in serious pain 10/10 level .

I laughed out loud at your , how do I present question . I have experienced exactly that . if i am dressed and have brushed my hair , i am well and anxious if i am in whatever , i am unkempt and depressed / attention seeking .

Im pleased you are passing your knowledge on

hugs
Jose

hi all dr cem akin and others have put out the best
definition of all mast cell disorders witch everyone cen follow
if you can poast it hear in its proper format

you can find it WITH GOOGLE

1MASTOCYTOSIS: COMMON SYMPTOMS MASTOCYTOSIS COMMON PRESENTATIONS

in the the NEWENGLAND SOCIETY OF ALLERGY .ORG 2011

This will hlep

Hi jennifer

Welcome to our forum
You are not alone I am in a very similar position but ahve moved a bit further forward than you

Tryptase ;- This is very hard to catch high , only 30% of all anaphylaxis show high tryptase .  So a high is useful but a normal does not mean its not anaphylaxis

There are several causes of angiodeama , not just histamine , and I wander if you have been tested for these . HAE - heridatory angiodeama , autoimmune agiodeama from lupus , thyroid , adrenals , and histamine .

HAE - compliments - C1 , C3 and C4
Lupus - ANA , C2
Thyroid - free T3 T4 and thyroid peroxidase enzymes
adrenals - adrenal antibodies and 9 am cortisol ( off steriods ) don't do this until you ahve other treatments .
histamine - tryptase , 24 hour methyl histamines and prostoglandins .

I ahve idiopathic angiodeama

I have lip , tounge and inner airway swelling , dizziness and fast heart beat , in a serious reaction .
Your doctors are wanting evidence of a typical anaphylaxis , you may never give them it . You are however having angiodeama which is affecting your airway . This is classed as idiopathic anaphylaxis , as per the protocol designed by Dr green burger .

Classification of Idiopathic Anaphylaxis (IA)

(Adopted from Roy Patterson, M.D. textbook on Idiopathic Anaphylaxis)
Disease      Symptom
Generalized (G)      Urticaria or angioedema with bronchospasm (asthma)
Hypotension (reduce blood pressure), syncope
Angioedema (A)      Angioedema with upper airway compromise
(Laryngeal, pharyngeal, tongue)
Frequency of episodes      More than 6 episodes per year: Frequent (F)
Less than 6 episodes per year: Infrequent (I)
Summary of Diagnoses      IA-G-F, IA-A-F, IA-G-I, IA-A-I
Variations of IA Diagnoses
Corticosteroid dependent
IA- (CSD-IA)      Applied when patient is controlled by prednisone but has recurrent episodes of IA below a threshold of prednisone.
Malignant IA (M-IA);      Applied when patient requires high doses of prednisone to control IA. The dose is arbitrarily set at 30mg daily
Or 60mg on alternate days but much higher doses may be required.
IA-Questionable (Q)      Applied for a patient with possible IA where Documentation of objective findings is unsuccessful and diagnosis is uncertain.
IA-Variant (V)      Applied when symptoms of IA vary from classical IA.
IA-V may subsequently be classified as IA-I, IA-G, IA-Q or USIA
Undifferentiated Somatoform IA (USIA)      Symptoms mimic IA but no objective findings are documented and the symptoms are not responsive to the regimen of IA.

For several years steriods have been used as the controling mediaction . More recantly new meds have come out which can stabilise the condition

I was where you are last year . I am now off steriods day to day and going to ed every 3 months ish , as compared to every 3 weeks .

Pimidine has alcohol as its preservative and I couldn't use it as alcohol is a major trigger for me .

I will list my meds so you can get a feel for where I am at now . I think You are under medicated sweets .

Am :-
ranitidine 300mg
ceterizine 10mg
piriton 4 mg ( same as clomitron ) drug :- chorpheneramine mealate
hydrocortisone 10mg ( adrenals not working )
hydroxizine 25mg
oxycodone 15mg
paracatamol 1g ( tylenol )
cyclizine 50mg

Inhaler - symbicort 200/6 - slow acting albutarol class drug  and steriods

Lunch :-
paracatamol 1g
piriton 4mg

Tea
paracetamol 1g
piriton 4mg

8pm :-
oxycodone 15mg
Ranitidine 300mg
singulair 10mg
piriton 4mg
hyroxizine 25mg
cyclizine 50mg

Bed
paracetamol 1g

I was having daily throat tightenings and abdominal symptoms , until singulair and ranitidine was added . I have been on hydroxizine for a month and it has helped my brain fog and cysytis so much .

Its spring , pollen is not good for me . I ahve been in ED , 6 times the first year in march and april and 5 times last yr in march and april all with epi pen level reactions .

So far , cross fingers and everything else , I have not been to ED , YET , and its mid April .

Pollen is a problem to me , but it needs other triggers to make me ED level

In IA / mcas (ill expain next ) , we have a collection of normal mast cells which are behaving badly .

We may have a tryptase rise , but only in a short time frame in a serious reaction . 1-2 hrs post onset of symptoms . So catching it is hard . thats what the other tests are designed to do .

MCAS /MCAD , is a new diagnosis , which is having its diagnostic criteria honed down . It is where people have all the symptoms of mastocytosis but don't fit the criteria . The drugs are the same .

mastocytosis has extra , mishapen mast cells in clumps , in skin and bone marrow , which misbahave and burst with triggers . With so many extra cells , to release tryptase , it is higher in general terms and/or in a reaction . This is called clonal .

There is one exception , mmas , which is monoclonal mast cell activation . This is where there are extra mast cells but not enough in big enough clumps to be mastocytosis . these patients will ahve a normal tryptase

So as you can see there are 2 types of mast cell disease which do not show high tryptase . Most doctors do not know this. I have a paper about this if it will help .

Triggers are common to all of these conditions inc HAE . Pollens are a common trigger . people with mast cell disease can ahve true allergies as well , shown by high IGE in their blood . As a group we must NEVER come off our antihsitamines for testing , it is dangerous .

There is an article in the triggers section by Deb , our forum lead , which will help . Controlling triggers is central to managing this

Mine are sulphites , alcohol , vinegar and anything fermented , stress emotional and physical , infection , hormones , heat .

For the time being , whilst you find a mast cell doctor . There are 3 things to do doll ;-
Suss your triggers and avoid avoid avoid
use the low histamine diet :-
www.urticaria.thunderworksinc.com/pages/lowhistamine.html
keep a diary , of foods , lotions and potions and meds , and your symptoms , i sussed so many of my triggers this way

xolair , will work , if you have a IGE allergy . There are several routes to mast cell activation known and many not and IGE is only one . So it may work , but may not .

Singulair works by blocking leucotrines found in the lungs . I have found this has helped my airway swelling considerably . I was blue all the time when walking , I am much better , only blue if I exert myself , and far less so . It has also helped my general swelling , legs and hands in particular . It works regardless of the cause of swelling

The drug groups used for mast cell angiodeama , are :-
anti histamines :- type 1 drowsy - benadryl (us ) piriton UK ( clomitron ), ketiofen   and non drowsy - ceterizine and allegra .
Type 2 - ranitidine
lecotrine inhibitors :- singulair
mast cell stabilsers :- gastrocrom and ketiofen

I am not on a mast cell stabiliser yet , its my next step .

My doctors are also struggling to diagnose anaphylaxis . I have had 26 Epi pen level reactions. I think yours need to know that anaphylaxis is possible without a tryptase rise . Mine are open to having proof .

When you are swollen , I think an adrenaline nebuliser would be useful . NO alcohol I have had this when I have not had any systemic symptoms - dizziness , high/ low pulse or high / low blood pressure .

I completely understand where you are at sweetie I have been there with a stridor xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

I also have rebounds in the days post a biggie . It takes me a week to recover from each dose of adrenaline .

Ive got so much to chat about Ill stop there for now

Many hugs
Josie

Hi :- 2 threads going , as Jennifer moved it to introducing yourself ,

So can everyone answer there Jose