- venting and questions (long)

[Guest guest]

Hi ,

Welcome to the group, glad you found us, sorry you are

suffering with this problem. Doctors will generally

run a battery of tests, looking for infection,

illnesses such as lupus, diabetes, etc., possible

allergic reactions, etc. I had a large amount of

blood drawn and examined for all kinds of possible

stuff, results were all negative. This is a very

puzzling condition, sometimes doctors can figure it

out, mostly they can't.

I started keeping a diary shortly after my outbreaks

started, write down everything you eat and drink, all

medications taken, over-the-counter(even vitamins) as

well as prescription, write down when symptoms occur,

severity, what you were doing when they occured, where

you were (inside, outside, mall, grocery store, car,

etc). This can help you and your physicians determine

if there is a pattern to your outbreaks. Pay

attention to all products that you use, any new

cosmetics, shampoo, bath soap, laundry detergents,

fabric softners, perfumes, body washes etc can all be

triggers, so can heat, cold, stress, alcohol,

caffeine. Certain foods can cause or worsen hives, so

write down everything for at least 3 weeks. I took my

diary with me to the allergist. It helped me to

remember my symptoms (wrote those down too!) because

sometimes my skin would itch, sometimes it would burn

so bad that I felt like I had a terrible sunburn. For

the first several days I could not eat or sleep, I was

utterly miserable.

I have found that an H1 blocker (zyrtec, allegra,

clairitin) taken with an H2 blocker (zantac, tagamet)

works best for me. I take Zantac 150 mg and Allegra

60 mg, twice a day. I also take Doxepin 50 mg at

bedtime, the Doxepin has been what really helped the

hives. Some people in the group have sucess with

Atarax taken at bedtime. Ask for an H1 and an H2

blocker, along with Atarax or Doxepin. Be polite and

professional with your doctor, doctor's seem to have

rather fragile egos and they will generally be more

helpful if you handle them with " kid gloves " . I have

found that there are lots of docs who don't really

understand CU, so you may find that you are your own

best " detective " when it comes to looking for causes.

Please carry your epi-pen with you at all times, have

at least one at home and one in your purse or in your

pocket. Heat and cold damage the drug, so don't keep

it in your car. I also keep Benadryl with me, if I

start a bad out-break, I take the benadryl first (this

assumes I took my other meds)and then use your epi-pen

if you feel that your ability to breathe is in

jeapordy. Keep in touch and let me know how your

doctor visit goes.

Joan

--- lseiler@... wrote:

> Hi All - I'm new to the group. I've been reading,

> with much empathy,

> all of your messages. I was surprised and thrilled

> that a board

> exists for us hivers.

>

> My story: I had an attack of hives twice as a child

> (once at about 5

> y/o and again at 9 y/o). Both were single events

> that went away, and

> it was never determined what caused the hives. As a

> child I also had

> a reaction (swelling) to a bee sting and to mosquito

> (sp?) bites. I

> haven't been stung by a bee since then, but the

> swelling mosquito

> bites cleared up in childhood.

>

> About three months ago I started itching at night,

> in my sleep. This

> went on for a week or two, then one night the

> itching was so bad that

> I got and looked at myself in the mirror.

> Ugh....hives. I tried

> some benadryl, and I thought that was working okay.

> What I think

> really happened was that I slept through the

> itching.

>

> About two weeks after that I woke up in the middle

> of the night with

> hives and angioedema. My lips were about three

> times their normal

> size. I went to my primary care doc who gave me

> zyrtec (10mgs 2xper

> day). The zyrtec worked but turned me into a zombie

> (like falling

> asleep driving), so my doc put my on allegra (180mgs

> per day). The

> allegra didn't work at all. So back to zyrtec I

> went, but only

> taking 5 mgs 2xper day. I still hive, but the

> itching and burning

> were not that bad. I have other symptoms....tired

> all the time and

> nausea, plus this general feeling of just not being

> my normal self.

>

> I had another angio attack where my throat started

> to swell (very

> strange feeling....sort of like swallowing big

> marbles that get stuck

> in your throat). My primary doc gave my prednisone

> and an epipen. I

> had another angio attack....but not too bad.

>

> I went to a dermatologist who was nice, but

> basically said I need to

> see an allergist. One thing she did do was give me

> a scrip for

> tagamet. The tagamet, along with the zyrtec has

> helped. The nausea

> is pretty much gone. I found that taking 10mgs of

> zyrtec at night

> and 5mgs during day, plus the tagament is my best

> combination. But I

> have noticed that over these past three months my

> hives have gotten

> worse. This week is the worst....I have an

> appointment with an

> allergist who is going to do some testing, which

> means no drugs. I

> have hives on my scalp, between my toes and every

> place in between.

> The burning and itching is intense. Between Friday

> night and last

> night I haven't slept for more than an hour or two.

> I am in complete

> misery.

>

> Now that I've told you all my story and vented and

> complained....I'm

> asking for your help and expertise. How should I

> handle this

> appointment with the allergist? What types of

> testing should I have

> done, based on my symptoms?

>

> Thanks for listening and understanding!

>

>

>

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