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PostPosted: 06 Sep 2009, 18:01 
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First of all can i say how great this forum is. I have been suffering with "allergies" for the past 2.5 years and this is the first good place to read other peoples situations etc..!

Reading through the threads it becomes more and more apparent that there are some desperate people that are suffering with terrible reactions and have fundamentally no clue what is causing it. I was placed in the group of people suffering with "Idiopathic Anaphylaxis" about a year ago and am non the wiser as to what causes these reactions (that put me in Hospital on occasions) as I was the first time it happened. I have seen consultants in all areas of the medical spectrum, Allergists, ENT, Gastroenterologists (tests for Carcinoid Syndrome), Dermatologists (test for Mastocytosis). I have kept food diarys, tried different types of diets, tried different combinations of food and exercise etc etc. But my condition has symptoms that partly point to so many possible diagnosis but non showing any positive results, quite soon you get diagnosis of “idiopathic”.

Surely the group of “idiopathic anaphylaxis” suffers must be changing in size as possible new causes are found and or people are discovering what is the trigger for themselves. Also im told that it is something that you can go through that can phase out over 2 to 3 years.

As there doesn't seem to be any official database with peoples symptoms that can be cross referenced I would love to hear from anyone that has been diagnosed with “idiopathic anaphylaxis”, and have either seen reactions dropping off, found out what the cause is or have had it stop all together.I think sharing people experiences is a good way to exhaust all possibilities of what may be a cause.


I am 27 and have been suffering for about 2.5 years. I carry an epipen, fexofenadine and prednisolone with me. Luckily (kind of) for me I react very well to prednisolone to control the reactions. It is so important to have a sound action plan in place if a raction takes place. But of course its hanging over you every day as to when and where it will happen and how server this one will be…!

Good luck to all……..


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PostPosted: 23 Oct 2009, 15:04 
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Joined: 25 Jun 2009, 14:52
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Glad to know I am not alone with this diagnosis.

I have had allergies for most of my life but the last 12 months have been the worst, and I now have this diagnosis.I have been redeployed at work, and will soon reduce my hours.

I too have epi-pen (2) and Prednisolone. I take prednisolone daily anyway and Fexofendene. I also carry Piriton. Nearly all my attacks lead to hospitlaistaion, and I was in last week afetr my flu jab. However since this was the 12th time I had had it and I had preloaded with Prednisolone at a good dose, i was gutted. No H1N1 for me!

I know and avoid them like the plague, some of my triggers but not others. Hormones are thought to be a factor but not too much we can do about that. Others are hard to avoid zinc, lactose and alcohol being just 3.

Any help is gratefully received and i look forward to hearing from others


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PostPosted: 27 Oct 2009, 04:24 
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Joined: 26 Sep 2009, 02:41
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Hello. I have had IA for over 15 years, and while I was very ill in those early days, I am now doing very well. There are many things that you can do to help yourself, and as you can guess, educating yourself and becoming your own advocate is key to getting better. Also finding one of the few mast cell disease specialists in the world will help you immensely. Because there are so few of them, you will find that some are very open to communicating with your local doctor and giving advice to help your doctor treat you. I am fortunate in that I live in the US, and am a patient of one of these specialists. That is the reason that I know that they will help patients who do not live within proximity to them. (I do not live in the part of the country when my specialist is.)

There are so many ways to begin helping yourself, but it can be difficult if you are feeling ill to begin with. Everything is so much more difficult then.

I run a very active mast cell disease forum for people with IA, mastocytosis, etc. (http://www.mastcelldisorders.lefora.com) There are over 2000 posts in the various discussion categories. While I can't repost here all the tips over there, here is one of my posts for those new to IA who are searching for answers. Hope this helps get you started on finding some answers.


What should you be doing on a daily basis to feel better? You first need to identify your triggers. Everyone has different triggers, but we learn from each other and find many in common. Now, you may think you have no clue what your triggers are, but you simply need to pay more attention. How?

1. Food and drinks will really affect one's mast cell disorder. So, examine your foods. So many IA/masto people are highly triggered by food. Do you know which foods commonly degranulate mast cells? It seems that many of the same foods trigger symptoms in masto people. For example, shellfish and alcohol are 2 major triggers in most people. I am highly bothered by food. Interestingly enough, when I dieted really carefully to lose weight, I ate only natural foods, very small quanitites, and not much variety. My symptoms practically vanished! That tells me how many bad things in my food are bothering me. Make a list of what bothers you even slightly, and eliminate it. Figure out your safe foods and eat just those. Unfortunately trying to be nutritious kind of takes a backseat when trying to simply figure out the few foods that are safe to eat. Worry about the right food groups later after you are "stabilized. Keep a food diary. Record everything you eat and how you felt later. This will help you know what you need to avoid. Once again, 2 biggie no-nos: shellfish and alcohol.

2. Examine your lifestyle. What needs to be changed in order to lessen your symptoms? Stress actually degranulates mast cells, so think about if you have any stress in your life and how to eliminate it. I chose to drop out of my Ph.D. program because of the stress, even though I was at the end of it and only needed to write my Dissertation. This reduced my stress levels greatly. I then started my own business. Being my own boss is great. I can work when I feel well and stop when I don't.

3. Fatigue. Make sure that you get a lot of sleep. Try to shoot for 9 or 10 hrs/night and it will help. (This is one I need to work on!)

4. Stress reduction at any given moment. When you feel terrible, do you sit and focus on it? Don't do this. Try to distract yourself. Pick up an exciting book and immerse yourself in it or find your favorite tv show or movie to watch. Focusing on what is causing you stress will not help unless you are creating a way to eliminate it. Otherwise, worrying about something (without doing anything about it) is wasted energy. It doesn't change the fact, and it only harms you physically.

5. Drink lots of water (I need to get better at this, too!)

6. Examine your environment. Are there any triggers in your home, such as mold, dust, etc? I evaluated my home, because I was out of town for a month and my symptoms subsided and when I returned home, I was a bit itchier and flushed than when I was out of town. I was worried that something in my house triggered me. Should I move? I don't know yet.....still investigating.

7. Identify all triggers and do your best to eliminate them. Don't feel guilty for the actions you need to take. I long ago realized that I need rest throughout the day. I have young twins, and a busy business, but when I need to lie down, I just do. I used to feel guilty about it, but not anymore. My husband now realizes that if I need to rest, then I am going to do it no matter what. Even with a cleaning lady, my house can become a cluttered mess quickly -- little kids can mess up a place in 30 seconds! But, that is just how my house has to be, because I can't clean it, take care of my kids, run my business, and deal with my IA. So, the house stays cluttered. Oh well, I do the best I can, and have simply rearranged my priorities.

As you can probably guess, I now have a pretty calm and laid back personality, but I had to work at it. The more you educate yourself about masto/IA and find the right help, the better you will feel. I guarantee it! I used to feel like I had the flu all the time every day. I used to have nasty attacks and end up in the ER. None of this happens anymore since I started with Dr. Cem Akin in Boston and got on the right meds. I also live a life of awareness of my triggers, and I just incorporate avoiding those triggers into my daily life. Easy.

Here is an example of food triggers. These are my triggers. They are probably a good base of common foods. I don't cut out all of them entirely, some I can eat in tiny quantities. Here is my list with a next to my worst triggers, although I am sure I will forget some. I never touch the foods that I put a next to. They will send me straight into anaphylactic shock.

My triggers:

Garlic (even the smell)
Onions (even the smell)
Spices with strong flavors * (even the smell)
Black or red pepper
Spicy foods *
Raw vegetables (but lettuce is fine)
Cooked vegetables: any gas producing ones, such as spinach, broccoli, cauliflower, eggplant
Cereal (simple corn flakes are as harsh a fiber cereal as I can eat)
Soups *
Fatty foods
Foods with preservatives
Alcohol
Yogurt
Milk (lactose free is fine)
Potato chips, fried tortilla chips , etc
Fried foods
Coffee, even decaf will bother me a bit
Chocolate
Meat, such as red meat, pork
Turkey (sends me to the hospital)
Some fish, such as salmon (mildly bothersome)
Fruits with fiber (such as apples)
Citrus
iced tea
carbonated drinks
red sauce for pasta
Chinese food
Shellfish *

Also, other common triggers for people are: stress, fatigue, heat (as in summer days or an indoor room being too hot), extreme temperatures, strong emotions (as in being extremely excited about doing something you are looking forward to), odors, and many antibiotics. It is important to realize that the triggers, symptoms, and medications are the same for Masto, IA, or MCAD. So, whichever of these one ends up with as a diagnosis, all of these triggers can apply.


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PostPosted: 18 Nov 2009, 14:35 
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Joined: 18 Nov 2009, 14:22
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Hello,

Saw your message on google so I thought I'd better register and drop in my story. I'm a 23 year old male, and I've been having idiopathic anaphylaxis and angioedema reactions for a little over two years now. Like you, I've kept food diaries, I've even kept diaries detailing what I've come in contact with previous to my reactions and there doesn't seem to be any particular rhyme or reason, apart from stress sometimes making them more common, but this isn't always the case.

I've been prescribed with 2x Epipens, Fexofenadine, Ranitidine and did have a course of Prednisoline, however I only really take Ranitidine now as this is the only thing that seems to calm my reactions down. Unfortunately these reactions seem to come on despite the medication, they only seem to help me recover better from an onset.

Over the past year I've stopped drinking entirely, exercised alot more and tried to eat more healthily and I believe this has helped, the reactions aren't quite as frequent as they used to be, and when they do come on most of the time it's just angioedema, and thankfully not anaphylaxis. The odd thing being, I can feel my throat slowly start to swell, I typically have an hour before it closes up and I can't speak / drink anything. So usually in this hour I try and eat as much ice cream as I can, see if I can reduce the swelling. :lol: Any excuse! :lol:


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PostPosted: 21 Jan 2010, 12:42 
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Joined: 21 Jan 2010, 12:13
Posts: 5
Hiiii :)

I am 21 and have been having anaphylaxis reactions now for about 18 months!! Having one yesterday I rushed down to the doctor and he said i had idiopathic anapylaxis and that there was absolutely nothing that can be done and that i should "buy some cool sunglasses for when it happens again and hope that it doesn't happen at a crucial point in my life like a week before my wedding"...!!!

And that was that!!!!

I just don't understand how this can happen and they can't try and find out what it is!!!! I'm so scared for when it is next going to happen now!!!!

xxx


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PostPosted: 28 Feb 2010, 20:52 
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Joined: 25 Jun 2009, 14:52
Posts: 33
if only cool sunglasses were the answer! I have said before that allergy education for professionals is poor but really

Have you phoned the helpline? You will get lots of information about angiodema, and knowledge is power


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PostPosted: 12 May 2010, 02:43 
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Joined: 12 May 2010, 02:33
Posts: 1
hi :)
i'm 16 and have been suffering from IA for the past 8 months, though this doesn't seem long it has been majorly effecting my life. i have had 13 full blown anaphylactic attacks since then, 9 of which have been in the past 21 days! they seem to be happening every 2 days ish.
after seeing a specialist in dermatology and allergys, they have come to the conclusion thats its not an allergy and the histamine in my system is getting released to the receptors for no reason. this is so frustrating as i can have attacks anywhere at anytime. i carry four epipens as it can often take this much to calm my reactions and i take one fexofenadine everyday. i also carry and anti histamine to take when the reaction starts and am regularly on prednisolene.
the reaction starts with a rash then i get a swollen lip, then tongue then my airways start to close, i sometimes black out and always end up in hospital.
no matter what drugs ive been tried on and no matter what i do the attacks persist, and its now effecting my every day life. my school arent comfortable with me being there, as it turns into a life threatening situation and my GCSE's start on tuesday.
what would anyone suggest i do next? anyone know of some medication thats worked for them? my parents are willing to go wherever to see a specialist, so have anyone seen a particularly good one?
any help, ideas or comments will be much appreciated :)
thanks
grace x


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PostPosted: 17 May 2010, 11:07 
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Joined: 22 Oct 2009, 13:10
Posts: 240
Hi Grace93

It sounds as though you are having a really rough time of things, I hope that you don't mind but I have contacted one of our Health Advisory Panel to see if he would be able to give you some advice on the best way to get some help for your condition. He said that it sounds as though you may have chronic uricaria but really need to see an allergy specialist or immunologist that specialises in that field. If you could let me know where you live we might be able to find a specialist in your area that your GP can refer you to. If you would like to contact me directly rather than via the Forum my email address is lindsey@allergyuk.org

Best wishes
Lindsey

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Deputy Chief Executive, Allergy UK


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PostPosted: 22 Jan 2012, 13:48 
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Joined: 22 Jan 2012, 13:37
Posts: 1
Location: Sweden
My God how happy I am to find all of you.
( We are from Sweden, sorry for my bad english )
My son ten years old i july have had about 20 anaphylaxis treated with epipen, and always ambulace and hospitalized. Since Jun 2011 he have had it once in a month :( Is here any children at this forum?
Well, we have looked for info for years and you all made our day today!!

please post messeges for us if you want to and i will keep on reading as many post about you all, and about all that can trigges the symptoms.

Thank you

Malin


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PostPosted: 29 Apr 2012, 12:09 
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Joined: 29 Apr 2012, 12:03
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Hi i wonder if anyone can help me, My Daughter has been diagnosed with IA, she is on a huge amount of medication and carries epi pens yet she is still reacting daily.
She has had a large amount of time off school as the school wont take her if she is reacting and im simply at my witts end, i dont know who to turn to next and feel totally lost in the world of medicine.......any help would be greatly appreciated xx


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