Undiagnosed and Miserable...

[D-Lish]

I've had terrible eye allergies since July. I'm purple and swollen on the lower lid- the purple bags extend down past my cheekbones. On my top eye-lids- red like sandpaper, pressing against my eyes. Everything to do with my eyes are swollen, red, itchy- it's like a spreading angry, swollen rash around my eyes. I have wrinkled lids, sore. angry, red- I haven't been able to get rid of it. Have seen so many Dr's.

 

I've been in hiding most of the summer. I've blown off all my social engagements because I'm so mortified by my appearance. I look like someone has just beat the crap out of me.

 

I've seen so many doc's and specialists- but no one has been able to provide any help or insight. I get a prescription, it clears things up for a few days, then stops working. I can't seem to catch a break.

 

Anyone experience this problem with their eyes?

 

Thanks for letting me vent.

[skydiveaddict]

There must be somebody that can help you

[carhill]

Any pets?...

[D-Lish]

There must be somebody that can help you

 

Maybe not. It's okay. The eyes are a really frustrating ailment to endure. The people that suffer from it are few and far between I'm sure.

 

It's probably more venting than anything else.

 

It's really, really hard to feel good when your face hurts and you look like crap.

[D-Lish]

Any pets?...

 

Yes, but I've had her (and her brother- now deceased) for 14 years.

 

It's really frustrating not knowing what I am allergic to. I've had many tests, and have been dismissed as having panic attacks. I'm not having panic attacks- I am really allergic to something random, and no one wants to listen.

 

The Allergist stopped looking after 3 grids- she speculated it was due to panic attacks and me imagining anaphylaxis- therefore manifesting perceived anxiety rather than a foreign body affecting me. I was dismissed.

 

I've launched into anaphylaxis twice in my life- no one can figure out why, how, or what has caused it. I carry an epi pen to be safe.

 

It's really frustrating. I'm allergic to something- and no one wants to work with me to figure out what that is.

-

Edited October 10, 2013 by D-Lish

[Outsider77]

I have a chronic illness and everyone thought I was crazy, too. It took a long time before someone figured out what it "probably" is.

 

I had so many stupid diagnoses, it was ridiculous. I went to countless doctors. I never gave up because I knew that it was real and not in my head. No one wanted to listen to me because doctors generally think their patients are all idiots.

 

Try doing some research online. That's what I did. For months on end. I looked at things very logically and tried to make connections. Now they think they know what's wrong with me but there will be no official diagnosis until it gets bad enough to tell.

 

It is possible that your illness is psychosomatic so you should try to objectively look at all the symptoms and all the evidence. Keep journals of what you do, what you eat, and at what times. Keep track of your moods. Then you will have something to show the doctors.

[D-Lish]

It is possible that your illness is psychosomatic so you should try to

objectively look at all the symptoms and all the evidence. Keep journals of what you do, what you eat, and at what times. Keep track of your moods. Then you will have something to show the doctors.

 

Have done all of that over the years- and I have given up. I recognize 100% that it could be psychosomatic - mostly because I have worked in the mental health field for such a long time prior to what I do now.

 

I've stopped wearing make-up- Besides a little blush, I have thrown all my make-up out. What I am experiencing is not hysteria.

 

Whatever causes my allergies is a foreign body. You know what? I believe 100% that your body knows what it is talking about.

[Outsider77]

Have you tried any alternative medicine? Going to naturopathic doctor? Elimination diet has helped many people.

[Bubberfly]

I remember when I was a kid, doctors kept thinking was something wrong with me. I had horrible mood swings and my stomach was always sick.

So I was diagnosed as Bipolar. Then they thought I had ulcers. Then they thought I must be allergic to everything I eat. Then they thought I must be schizophrenic.

I kept telling them, NO, I only feel like this after I eat or if I don't eat. The docs all looked at me like I was a silly little patient and need to listen to the smart doctor man.

After 10 years of random diagnosises one simple blood test ruled out...

I was diabetic. I wasn't nutso, I didn't have allergies, I just needed insulin.

I KNOW, I don't have a doctorate and all, but it's my body, I know how it's feeling.

 

Keep trying to get a proper diagnosis, no matter how frustrating things get. Keep your chin up.

 

Have the doctors given you steroids to help? Or anti-inflammatories? Eye drops? Antibiotics?

Many times my allergies lead to infections which I need to treat with meds.

 

In the meantime:

Do you accidentally get shampoo or conditioner in your eyes when you wash?? Do you wear make up? Do you sleep with down pillows or comforter? Do you allow pets on your bed? Have you started or stopped eating certain foods? Have you moved somewhere with different types of plants around?

 

Try doing your own "allergy tests" at home. Keep a journal of everything. Say, you usually sleep with a down comforter. Go for a week without the down comforter and make note of any changes (if any) it makes. If you see a difference in anything with your eyes with your "tests" let your doctor know.

 

I wouldn't ruin my social life because of this. I wouldn't mind one bit if my friend had icky allergy eyes. I'd be supportive and understanding. I know you feel gross, but just tell people, "sorry about my eyes, it's just allergies, promise I'm not contagious!" Most people would be cool and feel a little bad for you. Not your fault your eyes decided to kick your own @$$

[skydiveaddict]

It's probably more venting than anything else.

 

It's really, really hard to feel good when your face hurts and you look like crap.

 

I believe it. That would drive me insane.

[D-Lish]

I remember when I was a kid, doctors kept thinking was something wrong with me. I had horrible mood swings and my stomach was always sick.

So I was diagnosed as Bipolar. Then they thought I had ulcers. Then they thought I must be allergic to everything I eat. Then they thought I must be schizophrenic.

I kept telling them, NO, I only feel like this after I eat or if I don't eat. The docs all looked at me like I was a silly little patient and need to listen to the smart doctor man.

After 10 years of random diagnosises one simple blood test ruled out...

I was diabetic. I wasn't nutso, I didn't have allergies, I just needed insulin.

I KNOW, I don't have a doctorate and all, but it's my body, I know how it's feeling.

 

Keep trying to get a proper diagnosis, no matter how frustrating things get. Keep your chin up.

 

Have the doctors given you steroids to help? Or anti-inflammatories? Eye drops? Antibiotics?

Many times my allergies lead to infections which I need to treat with meds.

 

In the meantime:

Do you accidentally get shampoo or conditioner in your eyes when you wash?? Do you wear make up? Do you sleep with down pillows or comforter? Do you allow pets on your bed? Have you started or stopped eating certain foods? Have you moved somewhere with different types of plants around?

 

Try doing your own "allergy tests" at home. Keep a journal of everything. Say, you usually sleep with a down comforter. Go for a week without the down comforter and make note of any changes (if any) it makes. If you see a difference in anything with your eyes with your "tests" let your doctor know.

 

I wouldn't ruin my social life because of this. I wouldn't mind one bit if my friend had icky allergy eyes. I'd be supportive and understanding. I know you feel gross, but just tell people, "sorry about my eyes, it's just allergies, promise I'm not contagious!" Most people would be cool and feel a little bad for you. Not your fault your eyes decided to kick your own @$$

 

As I write this, such a long list of possibilities.

 

What bothers me more than anything else- is that when I research the topic- the symptoms I have with regard to finding any respite are few and far between. Most of the research I have found indicates that I'm stuck with chronic swollen eyes forever...

[skydiveaddict]

. Most of the research I have found indicates that I'm stuck with chronic swollen eyes forever...

 

My brother's a doc. I'm gonna ask him about this.

[skydiveaddict]

D, already heard back from my brother. PM me if your interested. He's not nearly as smart as me, nor as good looking. But he is a Dr.

[Art_Critic]

I have a strange allergy that makes my eyes swell and hurt and showed up around the age of 40, Aspirin or Advil.

I also feel the same allergy when I eat Italian food like pizza or lasagna.

The red pepper in the Italian food has the same chemical that causes the allergy in Aspirin and Advil.

 

Not saying your allergy is that but let me tell you it was hard to figure out and the drug/allergy crosses over to food so that made it harder.

 

I hope you figure out what it is..

 

One of my family members found out in their 40's that they were allergic to mold, and that means they can't eat certain cheeses.

 

Hang in there...

[FitChick]

After eliminating the usual suspects (makeup, skin care products, soap, shampoo, hairspray, laundry detergent, fabric softener) I'd try diet next. Gluten free or dairy free or anything you suspect. Anyone else in your family allergic to anything?

 

Try the skincare forum at makeupalley.

[Divasu]

Gee, that sounds horrible. Could be some type of conjunctivitis or an autoimmune issue, allergy like you said, etc.

 

Was the prescription an antibiotic (IE: tetracycline) or a antihistamine?

 

Years ago I experienced recurring bouts of rosacea and perioral dermatitis, antibiotics were the last resort and the only remedy that worked (I tried to topical ointments, changing cosmetics, face cleansers, home remedies, etc. but they did very little to help). It certainly began to feel debilitating at times.

 

I'm sure you've already seen an Opthamologist as well?

[whichwayisup]

Do a list of every single thing you drink and eat. List too, soaps, shampoo's, laundry detergent and dryer thingy's (bounce if you use it) etc.. A friend of mine figured out he was allergic to Cold Water Tide. Took him months to figure out it and nobody else in the family was reacting. Also, he did go see his Dr, did some allergy tests, turned out this year pollen is really bad so many who never reacted before are reacting now.

 

Don't give up! Hope you feel better D.

 

Calling Dr. House!

[D-Lish]

Hi Guys,

 

Sorry I took so long to post again. Day after I posted, I woke up feeling worse than ever- face had swollen up like a football, difficulty breathing, and my skin was itching from head to toe. I went to emerge, was admitted, got put on a drip- was prescribed prednisone for 7 days- and given an epi-pen. The emerge doc said she thought I'd been in an anaphylactic state for a while- was just staving off a full blown reaction because I'd been pumping benedryl and anti-histamine drops so religiously.

 

I've been better for 5 days- better than I have been all summer. Prednisone is a powerful anti-inflammatory, and I stop it Thursday. I have a follow up with my dr. Prednisone is another crazy drug to have to deal with. I'm scared the problem will come back once this drug leaves me. It's a managing drug- not a treatment.

 

I've been taking wellbutrin for 7 weeks, and they asked me to discontinue that as well. It sucks, because the wellbutrin was really diminishing my anxiety. It is possible some ingredient in that was exacerbating my allergic response. Better to deal with anxiety than anaphylaxis.

 

I now have to wait to get in for allergy testing again- and it's looking like 6-8 weeks for that appointment.

 

At least, if a first frost comes and I improve- I can focus on seasonal allergies as a culprit.

 

I've been playing trial and error with:

Bedding

Detergent

make-up

bread

dairy...

 

Could be a low grade virus yet to be determined- but I've seen a specialist for my eyes- two different ones. It's not an eye infection they can detect or recognize.

 

Thanks so much for listening, thanks for your input- I'll keep you updated.

D

[carhill]

IMO, if not already done, keep a journal of observations and events/changes. This can be very helpful in differential diagnosis and treatment. Although for a different reason, I kept a journal while caregiving and it helped enormously in the management of brain meds for my mom. Also, if possible, seek out a team of doctors from different specialties which focus on these kind of differentials. I found the team approach, especially seeing the same docs consistently, to be both efficient and efficacious.

 

What you're experiencing is far beyond what a lay person can offer practical assistance with so I'll offer my sympathies and best wishes for a positive outcome.

[Outsider77]

Hope everything works out okay and that you get your answers.

[whichwayisup]

Wow D, that sucks...But glad you are feeling better. Hope they can figure out what is going on!

 

Ask if there is a cancellation for them to call you asap. 6-8 weeks is so long!

[mea_M]

Hmmmm.. Have you been tested for food allergies? Have you had any bug bites? Especially one from a tick. Just asking a question or two in order to help. I understand your frustration due to having chronic Lyme disease that took about 2 years to figure out. Lyme can do very strange things to just about every part of the body. My symptoms did not make sense at first. Totally know where your coming from. Hang in there D.

 

Mea:-)

[spiderowl]

Have you and your docs looked into the possibility that it might be Rosacea? This is treated with antibiotics not antihistamines. I had a similar problem and did some research. It usually appears on the face too, but I wouldn't be surprised if it could affect the eyes first.

 

Ah, re-reading your post above, it does sound allergic. But, it's worth considering other things like Rosacea because although it is treated with antibiotics, I should think untreated Rosacea could cause an allergy-prone person to have bad reactions, therefore confusing the issue.

 

Just a thought anyway.

[D-Lish]

Have you and your docs looked into the possibility that it might be Rosacea? This is treated with antibiotics not antihistamines. I had a similar problem and did some research. It usually appears on the face too, but I wouldn't be surprised if it could affect the eyes first.

 

Ah, re-reading your post above, it does sound allergic. But, it's worth considering other things like Rosacea because although it is treated with antibiotics, I should think untreated Rosacea could cause an allergy-prone person to have bad reactions, therefore confusing the issue.

 

Just a thought anyway.

 

Hey!

 

I haven't tried antibiotics yet because they ruled out an infection or virus. I am leaning towards a low grade viral infection- because as soon as I started tapering off the steroids, the symptoms started coming back again.

 

I'm not puffing or swelling in the eyes as much- but the angry, red, sore under eye came back. Under my eyes is crimson red- dry like sandpaper, and super painful.

 

I'm back for another follow-up appointment tomorrow. It could be Rosacea, my cheeks are red as well- and my face feels really hot. I do feel feverish sometimes- and dizzy. I also have lost my appetite- and have lost 15lbs in the past 6 weeks. That's almost 25 lbs in total since mid-summer.

 

I've had blood work done, should find out the results soon enough.

 

Maybe I have to book an appointment with Dr. House!

 

Thanks for letting me vent.

[whichwayisup]

Yes, calling Dr. House!

 

You're thin like me, so losing all that weight is not good! Please buy Ensure and take multivitamins to make sure you're getting all the nutrients you need.