So.. we’ve all been here haven’t we? On the brink of insanity because of this unbearable allergy. Drowning ourselves in Benadryal, Cetirizine, among others, with little to no results. I have the additional fortune of also having Exercise Induced Anaphylaxis, which needless to say, leaves me basically house ridden spiraling into a depression..
I’m about to be 21, and I can’t get a job, and even if I can, It doesn’t last because well, you get sent home so many times for your face swelling up for no reason. I hate the burden that I place on everyone around me, I can’t do anything.. I went to the grocery store and broke out in hives and within five minute, sure enough, my lips and eyes were swollen and I was in the bathroom standing under a faucet of ice cold water for thirty minutes, after taking way too much Benadryl to calm it down..
You go to doctors, they go “leaky gut” this, “bad diet” that.. They don’t know.. You go to an allergist, they just throw a million different pills at you and send you on your way. It seems like there is no end, don’t get me started on that “7 year lifespan” BS, I’ve had this since I was 13, and it seems like the longer I’ve had this, the worse it’s got.
I remember two years ago, I was able to walk miles, while only suffering a mild itch, I held down a job, and now, I can barely leave the house, forget exercise or anything to physically demanding, hell even if I get emotional (Angry, stressed, HAPPY) Boom, trip to the ER.
I wanna do so much more in my life.. But I can’t. Hell it’s even in my dreams now, I run in my dreams? I get the itch, It’s unbearable.
Like the title says, I’m breaking down, physically and mentally..
-K
Nathan says
You’re so strong for continuously fighting, yes it takes a toll on your mental and physical health but don’t let it win! Keep fighting and as hard as it is stay positive because there’s always light at the end of the tunnel. We’ve all been in the same position not knowing if or when we’d get better but I promise you give it time, stay positive and try exercising slowly , things will change ā¤
Daniel Richter says
I feel your pain I have suffered with this for years . I have yet talked to a doctor who knows what I have . I just recently found this site and know what I am suffering from finally. What is not good news is there seems to be no relieve from it, it usually ends for me end of March so ,then in November it starts all over. I have gotten so bad I thought about taking my life. So hang in there I am going to the v.a. Soon. As they will see me. I heard some steroids work for a while but most doctors will not let you stay on them to long. Hell with the side effects if they work. I am willing to try them. I have gotten a shot before and it gave me relief for a few weeks so maybe you can try it.
Bates says
Don’t give up K! We know what you are going through. You ha e to keep trying different solutions to help you fight. You will eventually find one that works best for you.
Have you tried sweat therapy?
Karen says
This is the first time I have posted of my situation; I could relate totally, however, so I wanted to reach out to you. I hear your frustration and it sounds like your nerves are at their breaking point. I commend you for reaching out through this blog to share your sadness in hopes that maybe, just maybe, someone can provide some advice that might help you in your own situation. If you were clear for a period of time in the past – be assured – it CAN happen again. May I provide to you my own journey but in doing so only to immediately get to the point as to what has helped me. We individually must be our own best advocates for our health.
1. I take blood pressure medication in the a.m. to lower my pulse rate plus (doctor approved) CoQ10 on a regular basis and during the day to control my blood pressure. I don’t need a cuff monitor – I can tell when my blood pressure is elevated so I regulate the taking of CoQ10 on my own.
2. Flushing supplements – 1x/day Eredicane & 1x/day Rosadyn+. I always have extra Rosadyn+ that I carry with me and when I feel my face heat up, I take one more. I order both products online.
3. Benadryl maximum dose for adults when I can tell that the situation requires but for sure one right before bedtime. When I sense a facial nerve tingling, I immediately take a Benadryl assuming at least it has been 4 hours since my last single dose.
4. During a possible flareup, I put an ice cube in my mouth and hold it in my cheeks. At night I will often have a bowl of ice cubes on my night stand – sleep is often interrupted out of flushing and concern that I will wake with a flare up on my face.
5. I keep the temperature fairly cool in the bedroom at night – around 68 degrees with a ceiling fan on me as well.
6. I cannot overdry my facial skin so I only wash my face in the a.m. and in the p.m. before bed.
7. I wear a light coverage of Clinique Acne Solutions makeup during the day. I’m not sure your gender, however, either gender can wear a very light coverage of makeup. My facial skin is much less sensitive to temperature changes with makeup – wearing NO makeup is actually not an option for me as my facial skin is VERY sensitive.
8. I take a low dose of Welbutrin antidepressants a.m. and p.m. to help control my emotional concern.
9. I go to the gym for treadmill work DAILY . . . I cannot miss an exercise day even if it requires me to get up at 5 AM in the morning before work as it helps to control my blood pressure, mood, and sensitivity to warmer temperatures.
10. With a calmer mental and emotional state, I am able to get my needed 8 to 9 hours a night of sleep. I have actually learned to sleep with the TV on as the noise acts as a distraction for my mind to stop musing over the “possible” heat rash that might appear during the evening hours.
11. I consume minimal caffeine, minimal simple carbohydrates, and NO raw sugar or desserts of any kind. We are what we eat so my diet is EXTREMELY carefully thought out.
12 I also take 50 mil daily of Minocycline for mild acne control (dermatologist prescribed). (My skin products routine is yet another list. I didn’t hear you say that acne is an issue so I’ve left off “that” enumerated list.)
I’m sending you understanding, concern, yet positive hopefulness that my routine might give you suggestions for your own situation. Try to stay positive by understanding your body’s reactions and what you believe to have worked in the past and open to a new maintenance routine to get your health challenge under control.
Gabe says
My advice would be this:
Don’t look to the future in hope of it clearing. Accept that right now this is your reality. Stay calm about it and accept the condition you have. Logically work out the best response to this scenario (as if it were a game).
E.g. Can I work from home, can I find a way of sweating that doesn’t induce anaphylaxis, such as luke warm baths or steam rooms.
Don’t get stressed about your situation & and don’t hope for some change in the future- both these mindsets are unproductive and will make you feel worse. Just enjoy the problem solving life has given you to do.
Think of what you have benefitted from having this problem: You’re probably more emotionally mature, you’ve learnt to enjoy the little things, and you’ll be able to experience lots of joy when it eventually fades away in everything you do.
I’d advise you to drink lots of water, and dramatically alter your diet. I only eat: Broccilli, carrots, parsnips, kale, apples, white rice, sweet potatoes, chicken and blueberries. This diet plan was made after a heck of a lot of researching into individual foods- and it’s helped me more than any medicine I’ve ever taken.
I’d also advise you focus on mindfulness and presence. Emotions like anxiety are as impactful on this problem as physical things like heat. Look into reading books like “the power of now” by Eckhart Tolle, and Alan watts books- lots of YouTube videos by these guys. It’s very helpful, and actually improved my condition since doing meditation (I believe my hives were anxiety induced initially).
Hope this helps.
Marcia Hildreth McGrath says
Dear K, I’m so so sorry! My 32 year old son has C.U. and has suffered severely. However, there is hope, as he has gotten relief through experimenting with his diet and exercise. He is totally off of sugar and caffeine, and MUST exercise 4 or more times per week to keep things reasonable enough to endure it. If I were suffering as much as you, I’d go to the Weimar Institute in CA and see if Dr. Neal Nedley could help me. Or, I would at least try a phone consultation with Dr. Philip Collins, who is in western NC. Both are natural minded, and I’m sure might be of some assistance to you. You may benefit from living in at Weimar for a few weeks with a very restricted diet. As rough a time as you are having, it would be worth a shot. I will be praying for you.
Marcia
K says
Thank you all for your words and advice. There is a good point of living with this as my reality, and as dreadful as this is, I have to live with that. Sweat therapy is out of the question as if I get to hot nowadays, swelling begins.
Bates says
Breaking the barrier every morning was esssntial for me last winter. My chest and arms would break out and the pain was immense but after that I could go through my day normally. Eventually it got less and less severe.
This winter I haven’t had 1 breakout mainly because of my unorthodox method of eating crazy spicy food a few times a week to keep my heat resistance sky high. It’s working incredibly well.
Hivesguy says
Thanks for sharing. Just a quick note: People with anaphylaxis or exercise-induced anaphylaxis should absolutely never try sweat therapy or exercise. They will end up swollen, dead, or in the hospital. They are a different case than the average cholinergic urticaria.
Susie says
I just came across this wonderful website today as I am in desperate need of answers. I read your comments & my jaw dropped. Not that I delight in anyone else’s troubles but there’s a certain sense of comfort knowing that I’m not crazy or alone in this bizarre “condition”. I can honestly feel your pain. About 2 years ago I was canoeing down the creek on a super hot day & just broke out in hives all over & it hasn’t stopped!? I thought it was just something like poison ivy or from the mosquito repellent etc.. Then I kept noticing it was mainly when I would get hot or anxious. I kept going to different doctors who basically just prescribed steroids (which gave me terrible side effects) & tell me to take benedryl (which puts me in a small coma). Neither one of these work for me since I have to be active in my job. I am a recreation therapist AND I live in Mississippi which seems to be a double whammy- it’s always hot & humid! Let’s just say it has hindered my outdoor enjoyment considerably.
It has gotten so bad that I am going to have rethink my career or somehow get a handle on what is happening to my body. I try to remain as inactive at work as possible now & I do not play tennis anymore š or exercise. I have gained about 25 pds & feel just all around out of shape mentally & physically. I’m a Rec therapist who needs a Rec therapist!?
I am thankful I stumbled upon this site. I am going to research the heck out of this site and try my hardest to make some changes.
I have noticed some relief from a concoction I made- spring water, drops of chamomile oil, tea tree oil, euchalyptus oil & a hint of lavender. I spray it all over and it cools me down quickly & actually works pretty good for mosquitos! I keep a small spray bottle in my car, purse, office, back porch etc..
Thanks for letting me ramble, I just had to say I appreciate all of the tips, advice & stories. It’s nice to hear from people who are experiencing the same craziness. I will scream If I hear change your laundry detergent, take benedryl etc etc from people who have good intentions but zero clue of how this feels.
So thanks y’all and hang in there.