Chronic Hives messing with my CPAP stuff

Hi all,

It's been ages since I checked in here. I hope everyone's doing well.

In February I began developing hives that eventually covered my entire body including causing my lips to swell like balloons. For about 5 weeks I underwent tests and eliminated meds and foods to determine the cause which they ultimately decided is an autoimmune disease--probably Hashimoto's. Meanwhile, I never had a moment free of hives. After another 5 weeks of Prednisone the hives finally completely disappeared from my body until about 48 hours from my last dose of Prednisone. It was determined at that point that the condition is chronic and until I have a remission I need to continue a drastic antihistimine regimine to keep them somewhat controlled.

So... as you can imagine, the last thing I was concerned about was using my cpap. Most nights I didn't sleep anyway due to the itching. I'd finally crash after taking such high doses of antihistimines an elephant would've been knocked out. My face was so swollen and itchy that I couldn't even imagine trying to use the cpap.

The past few months I've gotten kind of used to my new reality. I've managed to wean my meds down to taking them only at night. I rate my hive severity from 1-5. Most of the time now I'm able to keep them under 2. But, by nighttime they start to hit 3 (which is also the point where I have a hard time sleeping). I just can't get myself revved up to use my cpap. I've become extremely claustrophobic and can't stand anything touching my face.

Prior to all this I'd gotten really used to my Respironics OptiLife nasal pillows. I didn't even need to tape my mouth anymore! It's a really unobtrusive mask... so it's probably the best I can do mask-wise. But I still can't sleep with it on.

I need encouragement!!!!!!

oh you poor thing, that is one tough situation...

so hard to sleep when you are that uncomfortable.

Have you tried the swift fx nasal pillow mask, its the closest thing to being naked..


Im so sorry you are going through this, and I hope that it turns out it really isnt chronic..

when I get itchy hives, I put alcohol on them, and it really relieves the itching and the welts go away quickly.

I have dermographism..

Hi Frazzled...... and you must be frazzled! First, I am so sorry for the discomfort and misery you have endured. I had never heard of chronic hives and did a little research on the web. The quote below is from a dermatological website-- bolded part are my emphasis. Just in case you had not heard of this drug being used.....

Occasionally, a person will continue to have hives for many years. These hives, called chronic urticaria, can be one of the most frustrating problems dermatologists see in their patients. This is defined as hives lasting longer than 6 weeks. Patients like this come in miserable and worried with this problem, often having seen multiple specialists. Neither the patient nor the doctor can determine the cause of the hives. Patients will often say, "It has got to be something causing these hives." The truth is hard to accept for some patients.

In the overwhelming majority of cases it is not "something" causing the chronic hives, it is "nothing." That is, in about 95% of chronic hives cases, the hives are "idiopathic" (a medical term that means there is no discernible cause). Because of those 5% of cases with a cause, it is worthwhile to see a physician to determine if any underlying disease is present (e.g. thyroid problems, liver problems, skin diseases, sinusitis) or if there is an allergic cause (i.e. a reaction to a drug, insect, food, etc.). This can be accomplished by a good history and physical, a few blood and urine tests and sometimes a skin biopsy. Some patients with chronic hives and elevated anti-thyroid antibodies in the blood improve when given thyroid supplement even if the thyroid function is normal.

In about half of patients with chronic idiopathic hives, the explanation is that body's immune system is, in a sense, overactive. The urticaria is "autoimmune". The immune system is attacking the normal tissues of the body and causing hives as a result. We know certain urticaria sufferers have other signs of autoimmune problems. Some have autoimmune thyroid disease, vitiligo, swollen joints, or certain abnormalities in the blood (especially the ANA test). A new treatment has recently emerged for autoimmune urticaria. This is the use of Plaquenil, a drug originally used for malaria. In a recent trial 83% improved or cleared completely when used for three months or more.

Taken from : http://www.aocd.org/skin/dermatologic_d ... caria.html

I cannot imagine what you are going through.... Kudos to you for dealing with it so gracefully..... I hope you can get back to using your machine/mask soon as you know this is far too important neglect. Oxygenation is vital to all the cells in our bodies, and getting the right levels 24/7 are important....and may even help to soothe your inflamed skin. Please try to get at least naps or an hour or two in with the therapy and build up your tolerance. We are all pulling for you!! Keep us posted.

Thanks for the suggestions elena88. I've found Gold Bond creams are helpful for my itching. It's probably the same principle as the alcohol. I'll check into the swift fx nasal pillow mask. I've learned a lot about dermographism these past few months. I'm sorry you have that. I experience some of those symptoms too. But, I think it's just because I start itching prior to the hives showing up so if I scratch where I itch a hive pops up there.


Emilia, I've seen that quote you listed. I sometimes use it to explain my condition to people who don't "get it". Everyone assumes I MUST be allergic to something and just haven't tried to eliminate enough. I researched my condition at length (just as I did cpap) and came across a great on-line support group for chronic urticaria. Many on there have used Plaquenil with some success. In my case, the anti-histimines are adequately controlling things. My dr says that as long as I hold this level of control it's best to hold off on more powerful meds. So... I have many options if my condition worsens or becomes resistant to my current meds. With any luck I'll experience a remission soon. I just hope it doesn't linger for years & years as many people have.

="frazzled-snoozer"]Thanks for the suggestions elena88. I've found Gold Bond creams are helpful for my itching. It's probably the same principle as the alcohol. I'll check into the swift fx nasal pillow mask. I've learned a lot about dermographism these past few months. I'm sorry you have that. I experience some of those symptoms too. But, I think it's just because I start itching prior to the hives showing up so if I scratch where I itch a hive pops up there.

I carry little bottles of purell with me everywhere and that really helps.. I have had this since I was in my twenties.. I caught a virus, and my immune
system when haywire.. but I only get welts if something touches me with pressure, then I put alcohol on it, and for some reason, it just stops
the welt from raising anymore, and quits itching.. so you might want to try that too..

I really thought it was a dust mite allergy for years! But the allergist confirmed that it was dermographism.. makes a great party trick though,
and if I dont have a pen to write a number down, I can always use my arm!

Anyway, I have a feeling youll get a handle on this, and I truly hope it will calm down and you will be in complete remission soon..
oh, and take a look at that swift fx, hardly any strap real estate is touching your face..

Hi, oh you poor darling, my heart reaches out to you.I have severe allergies and I know what you are going through!
It took my allergist many years and a lot of trying on both our parts to get my itching and swelling under control.I went for years never seeing a minute that i wasn't itching. At the present time they are under control pretty much and i am so thankful!
I have learned to stay away from a lot of things and through trial and error I have it under control.
If you need support, just hang around here, these people are so wonderful!!
I will put you in my prayers that GOD will keep you close in his arms and help you through these trying times.
Sometimes it takes a person whose been there to fully understand what you're going through.
please try to use your c-pap though, you need restful sleep now to help you fight this.
Keep up the good spirit and GOD bless you!!!

I took a look at that swift fx on-line. They have a "hers" version thats kinda cute. (I like pink.) It really does look like the one I need to try out. I've got to add that to my budget and try to get it soon. I didn't get very far with my cpap last night once again. In fact, didn't even get it completely on my face before I was ripping it off!

elena88, that dermographism probably is a pretty neat parlor trick. I trip my husband out when I can scratch a number on my arm like that. But that only works if I don't already have an armful of hives.

sister, I'm sorry about all your allergies. You're right that having people that really understand how this itchy stuff feels is a comfort. I guess the good thing for you is that you can point to certain triggers. But, I have to admit that while it would've been nice to identify specific elements that cause my hives so I can avoid them... it's kinda nice to know that I don't have any allergies. My aunt has so many allergies she can hardly get through a meal! And my husband's boss spends at least one night each week in the ER because he touches something or eats something that once had a nut within 5 inches of it! Pretty scary stuff! There's always someone worse off than me!

Jersey Girl, 2 recommendations for the Swift FX is a good sign. Thanks for the support. Do you use the one for women?

Hi frazzled-snoozer,

I hope I can offer some encouragement as well as sympathy. I have had two outbreaks of idiopathic hives, seven years apart. I'm just getting over the second. I saw my allergist on Monday. He cleared me to start tapering off the antihistamines and told me he'd see me in seven more years. It sounds like your case is more severe than mine, but for me at least, the standard cure worked the first time and has worked so far the second. The doctor didn't waste much time looking for ultimate causes. He ramped up the antihistamines until the hives started receding. Both times, that meant increasing the dose, increasing the number of times a day I took them, and experimenting with different antihistamines. When I was taking enough, the hives became less severe, and although they came and went, or popped up somewhere new while the old ones were fading, they were smaller and less frequent. Eventually they stopped reappearing, but I was told to keep on taking the medications at full strength for weeks after that. The doctor was pretty firm about this. I was taking a lot of pills and they left me feeling a bit dried out, but he didn't want me cutting back to the point where the hives were tolerable -- he wanted there to be a period of time when they were gone before changing the regimen. Then I tapered off over the course of two or three weeks the first time and am starting to do so again. I hope you have good results.

I have been suffering with hives since August. They were severe for three months and sleep was impossible. They went away for a month and a half but are back now. I am able to control them for the most part with doses of Zyrtec. The worse thing is when my face swells up and I can't go out in public. Every night I go to bed and wonder if my face will be swollen and misshapen. Will I have to cancel my plans for the day? I have had multiple tests, allergy, autoimmune and even counseling. We are unable to determine cause. I wanted to let you know that I use coconut oil (food and cooking grade) on the hives and it has really helped. I hope they disappear for you soon for good.

You're responding to a 7 yr old note... but good intentions.

I have only had my cpap for 3 months. I have got shots to control my itching once a month. When I asked about my rash/hives all over my body Dr. said It could be the tubing. The material could be the cause. Dermatologist had no idea and now seeing an allerigist in 20 days. Hope they can figure this out as I am miserable.