Oh, my word. I knew this day would come

[Parrothead]

Day 6. I'm alive. There are pix on post 82 if you want to see.

 

Another update:

At 4:30 I called my primary's office and spoke to the lady who does referrals. She said that my file was not flagged as urgent and it would take up to a week for her to get me an appointment with an allergist. Apparently there is a process. I suppose I'm making a mountain out of a molehill since there isn't a medical person that I've seen who thinks I'm having a serious problem.

 

I chose this person/group because of the laid back attitude. They don't order a lot of unnecessary tests and stuff. This is a bit too casual. Do I make a 4 hour round trip? What if I do and I'm still not taken seriously?

The saga continues...

 

Today's update:

 

So today I took Baxter to doggy day care. On the way home I stopped at the Rite Aid to pick up my 'script for the 50 mg Benedryl. While I was at the store my throat felt weird. Now I've got hives on my face, neck, back and ears. Yes it spread overnight.

 

I remembered that I overheard one of the receptionist ladies say that my primary would be manning the urgent care today.

 

So I went to the urgent care figuring I'd kill two birds with one stone. Yes, I saw her. Yes she is getting me an appointment with an allergist. No, she didn't do anything about the hives.

 

She palpitated my neck and said, yes, it is a bit swollen and irritated. I should take another 40 mg of Prednisone.

 

Well, ****! I had that yesterday. Nothing is happening. It isn't something that happens often, but people have died from this. Insert head banging smiley here.

 

 

 

 

Seems I've built up a tolerance for anti-histamines.

 

I've just come from the ER and my urticaria won't go away.

 

The good: My primary will probably now refer me to an allergist.

 

The bad: I can't get in to see my primary until almost mid-July.

There isn't any more meds I can take for this problem. I did ask about a shot of epi, but the doc indicated it would be overkill right now. :glare: Maybe I'll get that shot tomorrow when I come in bleeding because I've ripped away 85% of my skin.

 

The ugly: My extremities in just a little while when all of this anti-histamine flowing through my body stops working. None of the meds even touched the swelling in my hands. This cycle is nowhere near broken. You can see the hundreds of little places on my skin where the hive is just waiting to pop back p.

 

I won't be angry if someone wanted to pray or something for me.

Edited June 24, 2011 by Parrothead

[WiseOwlKnits]

:grouphug: That sounds absolutely awful. I hope you're better soon.

[Avila]

:grouphug:

 

Praying!

[Excelsior! Academy]

Wow. That sounds tough. I will pray for you.

[sbgrace]

How horrible. I'll certainly pray.

 

Ok, so I'm trying to remember...this is cold based, is that right, and not food related? If so steroids won't help, correct? Will epi pen help for that though?

 

I feel horrible for you.

 

:grouphug:

[Unicorn.]

"or something" has been done. :D Seriously though, I hope you find some relief soon!!

[justamouse]

Awww man, that sucks.

 

I will be praying for you. :grouphug::grouphug:

 

that said, JULY? Your primary can't see you till JULY? My head, it spins. You have no way to get to a reputable allergist before your primary's referral?

[Mrs Mungo]

Oh my gosh, that is horrible. :grouphug:

[DaffodilDreams]

Chucki, I have the Peterson's Field Guide to Medicinal Plants and it lists several plants that help with hives. My guide is for the Eastern/Central part of the country. I'm not sure where you are, but maybe it would help to find a similar guide for your area? Or, try a place like Whole Foods. Our local Whole Foods staffs the supplement and herb area with people who seem knowledgeable about the products and their uses. Natural remedies might at least get you through the next few weeks until you can get to an allergist. A quick search online also suggests that acupuncture might help in your situation. I'm scratching myself in sympathy for you! Hope you find relief soon. I know what hives are like since I'm allergic to so many antibiotics. It's miserable!

[Wyndie]

:grouphug::grouphug:

[LG Gone Wild]

You are on my list for today. :grouphug:

[Parrothead]

How horrible. I'll certainly pray.

 

Ok, so I'm trying to remember...this is cold based, is that right, and not food related? If so steroids won't help, correct? Will epi pen help for that though?

 

I feel horrible for you.

 

:grouphug:

Mostly now it is cold based. I do have the heat and exercise urticaria also.

 

Yes, I did have one doc at one ER visit give me a shot of epi. It was gone within a matter of minutes. The doc at the clinic made noises about a shot of epi, but that didn't happen. The doc at the ER pretty much said epi would be overkill. I'll be looking for overkill pretty soon, I'm thinking.

 

Awww man, that sucks.

 

I will be praying for you. :grouphug::grouphug:

 

that said, JULY? Your primary can't see you till JULY? My head, it spins. You have no way to get to a reputable allergist before your primary's referral?

I wasn't going to argue with the receptionist. My group runs an open access clinic, which is where I went first. So the receptionist at the open access is who I made the appointment through. She fully knew I was there because of a fairly large problem, but was already making me crazy. (I overheard her tell the nurse that there was a patient with an allergy to medication in the lobby. I was the only one there. That one really pays attention to the patients, eh?) So when she said "regular office visit?" I said, yeah, sure. Fine. That is how I ended up with an appointment in July.

 

Add to that dh is supposed to go to boat school the month of July. I don't want to end up with an appointment at the specialists until he gets back.

Edited June 22, 2011 by Parrothead

[prairiewindmomma]

That really, really, really stinks. I am so very sorry. I have developed temporary resistance before, and it was awful. So very awful.

 

I assume you've already tried switching between different antihistamines? I had to switch from Allegra to Zyrtec and that did bring relief. So far Zyrtec still works for me. I do try to switch during the winter to something else before I need the good stuff again Spring-Winter.

 

You might also try high doses of vitamin C, stinging nettles, or cromolyn (the nasal is over the counter and not a histamine blocker) until you can get in in July. The hair brush trick also works for me.

 

I'm also going to link you to this about a study done on people with chronic hives who were also antihistamine resistant:

http://archderm.ama-assn.org/cgi/reprint/142/10/1337.pdf

 

And, finally, if you've never read about a low histamine diet:

http://www.livestrong.com/article/313136-histamine-avoidance-diet/

 

I really hope you can find something that helps while you're waiting to get in for your appointment.

[Virg]

I will be praying and please keep us updated.

 

DS has horrible allergies and is hyper-reactive. He takes Singulair, Claritan, and Atarax plus a nasal and optical steroid/anti-histamine daily. Many days he takes Benadryl too. He still will be covered in hives once every other week or so. I have worried about what is happening to you now happening to him in the future and that constant epis will be the only recourse. I can not imagine that is good for anyone's body! So please let us know what is going on and what the drs say! Maybe it can help us too!

 

In the meantime I am SOOOOO sorry that you have to go through this! I have rarely had hives or allergic reactions but watching my son go through it I can only imagine how incredibly miserable it must be. Especially when nothing is helping at all! I hope that something helps you! The only suggestion we have been given while waiting for something to work is baking soda baths. I have no idea if that would help you or not. :grouphug::grouphug:

 

ETA: Also have you tried Atarax? Generic name is hydroxyzine. It has worked wonders! Usually someone only takes it for hives but DS takes a dose in the am and in the pm daily and has for two years. It works differently than Benadryl and you can take both at the same time.

Edited June 22, 2011 by ds4159

[elegantlion]

:grouphug: I have no advice, but I'm sorry. I know THIS wasn't what you wanted to do when dh was gone. :grouphug:

[Jean in Newcastle]

:grouphug::grouphug:

[Parrothead]

My husband has dermatagraphia and is on antihistamines all the time for itching. His dr. recommended that if it's too soon to take his next pill (and he is developing a tolerance, too), he can take a hairbrush (we use one with natural bristles) and scratch all over. This releases all the histamines at once and gives him a brief time of relief. He takes prescription strength allegra 2x/day and then has to add benadryl at night. I really feel for you!!

I can't take Allegra or Claratin especially not Claratin. The side effects are so bad I think I'd rather itch.

 

I do have a dry brush. I use it hen I end up with a full body attack like today. I didn't realize it would release all the histamines at once, It was just the easiest way to scratch all the parts the fastest.

That really, really, really stinks. I am so very sorry. I have developed temporary resistance before, and it was awful. So very awful.

 

I assume you've already tried switching between different antihistamines? I had to switch from Allegra to Zyrtec and that did bring relief. So far Zyrtec still works for me. I do try to switch during the winter to something else before I need the good stuff again Spring-Winter.

 

You might also try high doses of vitamin C, stinging nettles, or cromolyn (the nasal is over the counter and not a histamine blocker) until you can get in in July. The hair brush trick also works for me.

 

I'm also going to link you to this about a study done on people with chronic hives who were also antihistamine resistant:

http://archderm.ama-assn.org/cgi/reprint/142/10/1337.pdf

 

And, finally, if you've never read about a low histamine diet:

http://www.livestrong.com/article/313136-histamine-avoidance-diet/

 

I really hope you can find something that helps while you're waiting to get in for your appointment.

Thank you for the links. I'll read them with great interest.

[Parrothead]

:grouphug: I have no advice, but I'm sorry. I know THIS wasn't what you wanted to do when dh was gone. :grouphug:

No, not the activity I was planning. :lol:

 

I can't wait for fall. At least then I won't be so uncomfortable in a sweater and long pants.

:grouphug::grouphug:

 

:grouphug: Back at you. How are you feeling?

[VeteranMom]

Will they prescribe prednisone? I hope someone can figure something out for you.

[MelanieM]

Ouch! Have you tried homeopathics? You might find some suggestions here: http://www.abchomeopathy.com/c.php/172

[Parrothead]

Will they prescribe prednisone? I hope someone can figure something out for you.

I've got Prednisone. I've got enough to self medicate, but I have to watch it since I'm on it long term for another condition. It causes my kidneys to hurt after a few days. I took 40mg when this got bad this morning. Neither doc wanted me to have more today.

[Impish]

:grouphug::grouphug::grouphug:

Betting Dr. Jerkface wouldn't think it was overkill if HE were the one suffering :glare:

[Parrothead]

:grouphug::grouphug::grouphug:

Betting Dr. Jerkface wouldn't think it was overkill if HE were the one suffering :glare:

I sent you a PM. :D

[Ellesmere]

:grouphug:

Sorry to hear that! I've been through some severe allergic reactions and prednisone rounds, so I sort of understand. I sure hope a solution can be found for you!

[MariannNOVA]

Praying. :grouphug:

 

Domeboro solution compresses?

 

I'm so sorry.

[Parrothead]

Praying. :grouphug:

 

Domeboro solution compresses?

 

I'm so sorry.

Thank you.

[Parrothead]

For anyone interested in the continuing saga, I updated post 1.

[QueenCat]

:grouphug:s, hopefully the allergist can help you SOON!

[Giraffe]

Praying!!!

 

:grouphug:

[Carol in Cal.]

If your throat feels funny AND you have hives, it's an emergency. I'm glad you got the extra pred, but do you also have an epi, etc.? :grouphug:

[Parrothead]

If your throat feels funny AND you have hives, it's an emergency. I'm glad you got the extra pred, but do you also have an epi, etc.? :grouphug:

No. I don't have an epi. I've seen three providers in the last 24 hours. I know a shot of epi will more than likely take care of it.

 

The throat thing is still there. It didn't get better after the 50mg of benedryl. I don't know what to do at this point. Do I go back to the ER? Do I drive two hours (on 50 mg of Benedryl) to Bangor to an ER there? Do I just sit tight and wait for the other side of my neck to have hives and the inside to swell a bit?

[Allearia]

I'm so sorry :grouphug: I had massive hives all over my body right after my C-section with my first son and I didn't get anything that would really help for six weeks. When I finally went to the allergist they really didn't know what caused it. I was taking Zyrtec in the evening and another med in the morning that unfortunately I can't remember, maybe it started with an H? I just know how miserable I was, it was much worse than my recovery from surgery.

[Carol in Cal.]

No. I don't have an epi. I've seen three providers in the last 24 hours. I know a shot of epi will more than likely take care of it.

 

The throat thing is still there. It didn't get better after the 50mg of benedryl. I don't know what to do at this point. Do I go back to the ER? Do I drive two hours (on 50 mg of Benedryl) to Bangor to an ER there? Do I just sit tight and wait for the other side of my neck to have hives and the inside to swell a bit?

 

Geez louise. What horrible choices.

 

It sounds like you're getting worse, slowly but surely, and that you don't have a regular doctor who is really familiar with these things. Is that right?

 

If so, I think I would get a ride to the best ER around, no matter what it takes, and have someone else calling for allergist help along the way, urgently. While being driven I would be sipping cool water steadily, and breathing very slowly and steadily, and trying to stay very calm. The fact that the pred did not work really concerns me, but I'm no doctor. I don't know of another layer of drugs for these kinds of things, but I wonder whether there are alternatives. The thing is, a new doc is going to want to try benedryl and prednisone first, and you can lose time that way. So someone has to be along who can really advocate for you, and be very clear about what you have and have not taken already, in case you are having difficulty talking when you get there. (They can also cut through the bs of having twelve people ask to see your tongue and stick tongue depressors down your throat when it's almost closed and you're coughing your brains out and they are not even doctors and can't even help you.)

 

That's what I think, because breathing distress goes downhill almost imperceptibly to a point where it becomes a serious crisis. And then you go, "Wow, how did I get THAT bad?"

 

The other thing I would do if you haven't already is to try some kind of cortisone cream, if you have prescription strength especially, on the lesions. That's because once your allergies get triggered, you have to kind of attack them on all fronts, because your whole body is just READY to react. Avoid strong smells, keep a tepid temperature around you, use non-irritating clothes (organic cotton, ideally), no latex, no wool, no non-breathing materials.

[newlifemom]

Praying for you Chucki. I am sorry I didn't notice this before. I hope you find relief and soon. :grouphug:

[Parrothead]

Geez louise. What horrible choices.

 

It sounds like you're getting worse, slowly but surely, and that you don't have a regular doctor who is really familiar with these things. Is that right?

Absolutely!

 

If so, I think I would get a ride to the best ER around, no matter what it takes, and have someone else calling for allergist help along the way, urgently. While being driven I would be sipping cool water steadily, and breathing very slowly and steadily, and trying to stay very calm. The fact that the pred did not work really concerns me, but I'm no doctor. I don't know of another layer of drugs for these kinds of things, but I wonder whether there are alternatives. The thing is, a new doc is going to want to try benedryl and prednisone first, and you can lose time that way. So someone has to be along who can really advocate for you, and be very clear about what you have and have not taken already, in case you are having difficulty talking when you get there. (They can also cut through the bs of having twelve people ask to see your tongue and stick tongue depressors down your throat when it's almost closed and you're coughing your brains out and they are not even doctors and can't even help you.)

Everyone is busy. My one friend is on her way to NH. My other is working. Dh is sleeping. He has only had 3.5 hours of sleep at this point.

I truly am at a loss as to what to do next. I don't want to do the driving if I go any long distance. The last thing I need is to be driving and this gets to a point of crisis. If I didn't kill dd in the wreck, I'm sure there would be serious injuries.

 

That's what I think, because breathing distress goes downhill almost imperceptibly to a point where it becomes a serious crisis. And then you go, "Wow, how did I get THAT bad?"

 

The other thing I would do if you haven't already is to try some kind of cortisone cream, if you have prescription strength especially, on the lesions. That's because once your allergies get triggered, you have to kind of attack them on all fronts, because your whole body is just READY to react. Avoid strong smells, keep a tepid temperature around you, use non-irritating clothes (organic cotton, ideally), no latex, no wool, no non-breathing materials.

Thanks for the help.

[MelanieM]

I would try some apis (homeopathic remedy) and see if you can get some relief with that. Then I'd also seek proper medical care. Good luck!

[Carol in Cal.]

Thanks for the help.

 

There must be someone...or maybe you could start driving and your DH could take over when you get too tired (I can't drive with Benedryl myself).

 

We are watching and praying with you. May you be held in God's protective hands. May He continue to breathe the breath of life into you today. May He fill you with the peace that passes all understanding. May the God of all comfort bring you healing and relief.

[Parrothead]

I would try some apis (homeopathic remedy) and see if you can get some relief with that. Then I'd also seek proper medical care. Good luck!

Tell me what proper medical care is at this point. I'd really love to know since I've pretty much exhausted my choices. I really can't believe this is happening.

[Parrothead]

I would try some apis (homeopathic remedy) and see if you can get some relief with that. Then I'd also seek proper medical care. Good luck!

Where would I get that?

[MelanieM]

Tell me what proper medical care is at this point. I'd really love to know since I've pretty much exhausted my choices. I really can't believe this is happening.

 

:grouphug: :grouphug: Gosh sweetie, I wish I knew. I guess the ER would be the only option at this point (??), and considering the risk if you're having a reaction that impacts your breathing I'd probably get close to one so that you could go in right away if it came to that. I will say that *for me*, I would call my homeopath and seek her advice. I can give you her info if you want to go that route yourself. I really don't know if she could help you, but you could certainly make the call to see? (I work with her over the telephone, so in person visits aren't necessary.)

Where would I get that?

 

The grocery stores here carry the Boiron homeopathics so they're pretty easy to come by. Not sure if your local store would have them? A health store would also be a good bet. If you get it from the health store, go for 200c dosage. The grocery might only have 30c, which would be fine, but I think 200 would be better.

 

I'll be keeping you in my thoughts today and sending lots of healing vibes. :grouphug:

[JenC3]

Chucki, have you heard of NAET certified accupuncture? I'm going to be seeing one for my allergies which have turned hive/eczema based in the past year. I just did a search on the site and you have 2 in ME. I've heard amazing results and even if it wasn't totally successful maybe it would reduce your symptoms.

 

I can't link on my ipad, but the site is http://Www.naet.com

[elise1mds]

One of my friends has a similar problem. She has an autoimmune disorder that causes her to have allergies to just about everything outdoors, a huge list of foods/dyes/additives, and another huge list of medicines. She takes an obscene amount of antihistamines that would kill a lesser mortal and still breaks out. She was on daily steroids but can't be on those any more since she broke her foot just standing up; the steroids were making her bones brittle.

 

Anyway, can you get your doc to at least give you some steroid cream to rub on the hives? I hope you're able to get in and get some real answers soon. I'm so sorry :(

[MelanieM]

Chucki, have you heard of NAET certified accupuncture? I'm going to be seeing one for my allergies which have turned hive/eczema based in the past year. I just did a search on the site and you have 2 in ME. I've heard amazing results and even if it wasn't totally successful maybe it would reduce your symptoms.

 

I can't link on my ipad, but the site is Www.naet.com

 

I have a friend that had great success with NAET. She went from barely able to eat anything or go anywhere because of her severe allergies to being pretty much fully healthy.

[Parrothead]

Chucki, have you heard of NAET certified accupuncture? I'm going to be seeing one for my allergies which have turned hive/eczema based in the past year. I just did a search on the site and you have 2 in ME. I've heard amazing results and even if it wasn't totally successful maybe it would reduce your symptoms.

 

I can't link on my ipad, but the site is Www.naet.com

I'll look into this. Unfortunately it is Thursday. I seriously doubt I can see anyone tomorrow so that means some time next week.

 

Right now things are okay. I'm about at the same point yesterday, where the itching is minimal but the hives are still visible. I've literally over 100 red areas or spots on my body. Some of the spots are so big they are an inch across. The four on the left side of my neck where it felt swollen earlier. I drank a few cups of tea and that seemed to help my throat.

 

ETA: Out of curiosity I counted the ones on my left thigh. 129 on just that one part of my body. The rest of the leg below the knee has some and the other leg is just as bad. My arms don't have quite as many, but that is because there isn't the area on my arm that there is on my leg.

Edited June 23, 2011 by Parrothead

[prairiewindmomma]

--

Edited November 10, 2021 by prairiewindmomma

[Parrothead]

Chucki--Get your dd to take some pictures of you with your hives. It sounds like a weird thing to do, but it was helpful when meeting someone later on for the first time who isn't seeing you in a full flare. I have so been there with 100+ hives on one leg alone. It's hard to believe if you don't see it. ;) I would also kind of roughly chart what's going on when.....hives can be cyclical (like flaring at 10 pm at night, getting better during the day, flaring again at night), and I would be keeping a food journal.

Good idea. I hadn't thought about that. Yes, it is a cycle now. The cycle has to be thoroughly broken or it won't stop.

 

Do you have any clue of what's triggering your hives? Environmental? Foods? I know you said it also pops up with exercise.

I have cold urticaria. Ironically this time of year is worse than the winter. The hot outside or the warmth under the blankets at night then the cool of the house just sets me off. Or it will be 75*F and sunny one day, then 50*F and rainy the next. That will set it off. My body can't cope with the sudden changes. If it would get cold and stay cold or get hot a and stay hot I'd be okay.

 

If you don't require a referral from your doctor for insurance purposes, I'd be booking with an allergist now. They often take a few months to get into....my 3rdborn is getting tested Tuesday.....after 3 months of waiting. His only issue, however, was asthma. When my dd had an anaphylactic reaction, though, they tested her immediately....as in, we left the ER at 3 am and had an 8 am testing appointment with the specialist.

I think I have to have a referral. I haven't heard from my primary with an appointment for the allergist. I'm going to have to call. I don't even know how to go about finding an allergist unless I look online. I don't have a Bangor phone book.

 

Has your dr. been able to discern whether you're having problems breathing because of external hives or whether you're having an anaphylactic reaction? Because, honestly, it sounds like you're heading towards an ana one....and you need an epi-pen on hand and some treatment now.

She looked at me today, felt around on my neck and said, yes it is swollen and irritated. Go home and take more Prednisone.:glare:

 

Steroids may be the only way to go. Going to 40 mg of pred one day and then doing nothing is hard on the body. It's best if you can get them to taper you over like a 5 day course. I know a one day boost wouldn't do it for me.

I've got what is left over from a bottle of 120. I've prednisone on hand for my eyes. I also have Grave's eye disease. Every once in a blue moon I get double vision because of the swelling. So, yeah, I know how to take it correctly.

I'm pretty direct with my doctor. I would call her up, tell her that you don't think you're receiving the care that you need, ask her to print off a summary records sheet from your medical records, and drag dh to the ER with me after he has a few more hours of sleep under his belt. I would also ask her to prescribe an epi-pen for the road--promising not to use it on my own unless I really needed it--but having it on hand as insurance should things get bad quickly. I love my primary doc, but there have been a couple of times when we have just had to drive for decent specialized medical care. After a couple of these experiences (dd getting cancer, me having some serious pregnancy issues, etc.), I now just go straight to a specialist in some areas.

I'm sorry for you loss. That must have been a nightmare.

 

I was thinking today that I'm going to have to get someone to advocate for me. I'm not sure how to go about it. Dh, bless him, doesn't like to rock the boat. And I'm afraid I'm getting a reputation as a problem patient.

[prairiewindmomma]

---

Edited November 10, 2021 by prairiewindmomma

[Parrothead]

I've updated the OP again. It is becoming a crazy crazy thing. I don't know what to do.

[Disney Dreaming]

I haven't read through all the posts but strep can also cause hives. I mention this since you said your throat feels strange. I hope you get in to see someone soon!

[Pink Fairy]

Have you found any relevent treatment information from a reputable source online? When I was dealing with a serious medical problem I did a lot of my own research and referred to it during appointments, providing highlighted copies for the docs. If there are medical studies that have shown treatment A or treatment B is appropriate for your condition, and that you would prefer treatment B (in your case, a shot of epi, perhaps?), lay out your case in a confident manner. A good doctor is willing to consider a patient's requests/ideas, especially if they are backed up by good science.

 

In the meantime I'd request a call back from your doctor, and make it clear that you are uncomfortable with waiting (if you are) for an appointment with a specialist in the distant future. Even if your flare up has calmed down enough that you aren't in immdiate danger, you are suffering from a painful condition--it sounds like a no brainer to me.

 

So sorry this is happening to you! :grouphug: