Day 70 of the hive hostage situation

Posted , 9 users are following.

Wow.. ok so in mid-March I got my first hives outbreak. I went to urgent care, they told me it was from stress... sent me home.

That was about 2.5 months ago. Appointment with ENT on 6/24. In the meantime primary care says to take 50mg of benedryl every 4 hours. Ummmm ok.. I need to stay awake to live. Here are some stats I could use advice!

Tracking all food, meds, exposure, pollen count. No apparent link to anything specific BUT the pollen count has been high since this started. I can't truly measure that variable until it goes down (I'm in New England).

46 years young. Pretty stressful life but that's not new. 5'5" ~130lbs. Changes about the the same time as hives started: High Pollen count and low-carb lifestyle.

Found out that low carb foods like leftovers/meat, tomatoes, avocados, spinach, canned meats all are high histamine. Eliminated high histamine foods for one month.

What I'm doing:

  • Low Histamine, Low Carb food intake
  • 1 Zyrtec every morning
  • 25mg - 50mg benedryl minimum per day
  • Vitamin C 1000mg
  • DAO Supplement to pull histamines from food: 20K HDU before every meal
  • Watercress supplement
  • Quercetin with Bromelain Supplement.
  • Multi-Vitamin
  • Yoga (Trying to calm down in case it's stress related)
  • Walking 3x week, 4 miles

Symptoms:

  • Hives occur on feet, legs, hands, arms and unfortunately in my throat. Raised, painful, itchy. I would post a pic but it's quite gross. I hide my hands, feet and legs all day at work.
  • NO HIVES when I wake up the morning ... what the heck?
  • Mild hives mid-day.
  • Major hives by evening.
  • Here's a weird one... If I drink liquor by the 2nd drink the hives can be completely gone. So guess what? I'm doing this nightly to get relief.. which is fine I'm otherwise completely healthy.. but why is this?
  • I do have prednisone "in case of emergency" if they get so bad I can't take it anymore I will take 5mg of this and the hives completely disappear. I've only done this a few times because of what I've read about regular prednisone use.

Any advice? Under the "What I'm doing" category I feel like why am I even doing these things when it's expensive and not really impactful? Thoughts on the alcohol making it better? Weird! Thoughts on pollen count impact on this?

help! I'm feeling completely helpless right now. Thanks in advance for listening and responding everyone 😃

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  • Posted

    lm so sorry to hear this. 5 yrs ago after hives for 93 days, several tests and ER, and DR visits i was Dx with CHRONIC AUTOIMUNNE HIVES.

    have epi pens and steriods for emergencys. but daily they upped my vitamin D , probitics, eat gluten free now, and take benedryl as needed. its a struggle i can go for days even weeks with no symptoms then just like that back again!

    I also was diagnosed with rheumatoid arthritis and high antibodies for thyroid disease which kind of goes hand-in-hand with chronic hives . I pray for you that you get some answers and good luck to you !

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    • Posted

      Thanks for the note! I suppose I'll start next month with the ENT and go down the road we all go down to eliminate one thing at a time. Crazy that it takes 5 types of specialists sometimes to get a straight answer!

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  • Posted

    I have been going through something similar for almost 5 years now.

    I've been through so many doctors and specialists a this point. All of my stuff lines up with yours. Mine are also "pressure based". So if something rubs on me , touches me, or hugs me too tightly I swell up like crazy.

    It's the same thing though. Gone in the morning. Cruddy mid day. AWFUL in the evening. So painful and so itchy.

    We tried tons of different antihistamines, prednisone (which just can't work long term), and more. The final thing my doctor is recommending I look into is "Xolair". I believe it's only available via injections, but if this continues for more than a year or two, don't wait. I've read a lot of positive stuff about Xolair on people. (If it continues just talk to your doctor or get hooked up with a good allergist!)

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    • Posted

      (Let me say too, they said the same thing to me at first. Then thyroid (Which ended up being fine?). I've had a million swings at a diagnosis outside of "urticaria" but it's way more than just itching skin. I do sort of believe that it was stress-based for me. I get the general idea that it's all linked to the immune system in general. If it continues to be an issue an allergist is definitely who you want to talk to. Good luck!)

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    • Posted

      Thanks for responding! I have been reading about Xolair as well. Since mine started during pollen season I'm holding out hope that when it subsides so will "they" but I have to be thinking ahead in case that doesn't happen.

      The pressure based comment is interesting. I always have more hives on the cuffs of my pants... I wonder if that's why?

      Please let me know if you try the Xolair and how it's working out. I haven't found what the long term effects of it are... if any. ?

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  • Posted

    hello, firstly very sorry to hear you are suffering. i had hives and angioedema (can never spell this right) for 3 years with only relief coming from steroids which if i'm honest i would say to avoid but i was desperate (not nice long term side effects)

    i tried to monitor everything like you are and set out on my mission to find the cause and trigger. got referred to immunology, who kept saying over and over that there is no 1 cause and that it will burn itself out in time just not sure when. in meantime controlled with daily antihistamine and short course steroid when i felt it was unbearable. advised that stress and cafine, alcohol and salicylates in food can make it worse. Put on waiting list for xolar injections (immune supressant).

    i have been hive free for 1 year now apart from tiny outbreaks here and there that have gone with no need for tablets. i think pregnancy and hormones and having time off work after baby helped. i then left that stressful job and i know this helped.

    ive had time to reflect and i know now that for me all of this was stress related. it came on after a very stressful event and i know it was my bodies way of telling me that i needed to stop, slow down and look after myself because my mind was not listening or paying attention. i believe now that when our mind is ignoring stress or trauma and we are supressing emotions and not listening our body will find a way to force us to pay attention through chronic illness.

    its interesting that you say that you have no hives waking up (youve spent the night resting and are destressed), they go away after liquor (alcolohol is helping you relax). the other trigger you mention is going low card before this started, dieting or change in calorie intake is also a stress on the body. your hives get worse as day goes on in line with the stress that you are encountering and it builds up over the day.

    so i would really encourage you to evaluate the stress in your life, not just little things but really ask yourself what is causing stress, what is your body trying to tell you? has anything happened to tip you over the edge? are there any toxic realtionships in your life? are you doing anything that goes against your values? are you looking after everyone elses needs and not your own? do you have any trauma from your childhood that you haven't dealt with? have you been needing to lie or hide anything or supress emotion?

    i used to get so annoyed when dr would say it will go eventually, and i drove myself mad trying to figure out cause and i probably made it worse as a lot of the things i tried added more stress. for me i truly belive that it didnt go until i learnt the lesson to truly take care of myself and value myself and to say no to things in life that were not in line with who i authentically am.

    i wish you all the best!

    take care x

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    • Posted

      Thanks so much for this thoughtful response! I am definitely a worrier. The reason I have been sort of discounting stress is that I've always been like this and have certainly had much more stressful periods in my life. In fact I feel like I've gotten so much better at dealing with stress, that this seemed like a really odd time for it to pop up.

      That said, I agree with you completely. I am a very disciplined person and have been ruling out other causes (other than pollen) one by one.

      My question to you is... do you feel like the hives-train just gets to a point where it boils over due to stress and causes what I will call an "episode"? And we have to ride out that episode in order to get back to normal? I ask this because, of course, in the last three months I've had totally calm days and totally crazy days and the hives are the same throughout... which makes me look at stress less. But if you feel stress causes and entire "episode" where I have to ride it out then that might make sense as well?

      I would hate to to something like start getting Xoilar injections and rely on that if I can manage stress myself. I took prednisone a lot at first because I didn't know what was happening to me.. but I stopped because I didn't want to have the bad side effects. I do have a stash in case I have to do something important and am covered in hives.

      Thank you for listening!

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    • Posted

      yes definately agree with what you are saying about "bucket" if you thibk of it as overflowing, you have to wait for it to empty again, which can take a while, also if your bucket is quite full it wont take much to tip you over if that makes sense. i sense that you are a worrier and if disciplined like to have things in order, this over a long period of time could build up and at some point your body just says nope! i never believed the drs when they said it will eventually go and it has. but its still underneath and it took 3 years to burn out xxx

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  • Posted

    Hives since February 2017. Reacted to pressure, but was completely random apart from that. I am not a stressed person, usually, unless I've got the f****** hives....

    I feel for you, but of course everyone on here does, because this is an evil condition that doesn't have any rhyme nor reason.

    My dermatologist told me I could spend the rest of my days trying to narrow down the trigger/triggers, she described it as the 'perfect storm' of contributory factors, they could be working as an individual protagonist or as a group. I am sure mine is food related though.

    Xolair has worked for me, and I am now on 8 week intervals between injections. However, I occasionally get a strange gurgling in my digestive system after a meal and I am convinced that something in that meal is the trigger, but that Xolair is doing it's thing and keeping it under control. I am now going to keep a food diary and note when this happens, but it is so random.

    I agree about the booze, I remember that a glass of wine would calm the symptoms somewhat.

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    • Posted

      Thank you! My food diary is extensive but no pattern. I would have been bummed out if high histamine foods were the cause because they are so delicious! But at the same time at least then I would know what I'm dealing with and would be able to take action.

      I may just go back to a regular histamine diet as a test.. but as everyone here does I'm afraid of a massive breakout so I fear the test!

      It sounds like Xolair is at least an option. My friend is a rheumatologist (sp?) so I'm going to talk to her before I see the ENT for the first time. I try not to ask her medical questions since she is a person not just a doctor.. but I think the Xolair question is a must.

      Who administers this for you? The dematologist, ENT or someone else? Just curious.

      Thank you !!!!!!!!!

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    • Posted

      The injections are just sub cutaneous so I self administer now. I had a lesson from a vet how to do it and I just pop them both into a roll of fat (not tricky to find!) on my tummy. It's not painful and it saves getting a nurse out to do it, or visiting the surgery.

      I live in France so it is covered by my medical cover, but I am moving back to the uk at some point and I am dreading them saying it's too expensive.

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  • Posted

    Hi Marie,

    So sorry to hear of your urticaria. I suffered from this just over a year ago and had it bad for about 8 months, horrendous. I visited a couple of Nutritionists who put me on various supplements {which I still take], they include probiotics, digestive enzymes, Vitamin D drops and fish oil capsules. I was also advised to drink 2.5 litres of water EVERY DAY without fail, cut out tea [coffee okay] , No chocolate or tomatos and after doing this for a couple of weeks my hives actually cleared up!!! not had any since.

    Give it a try Marie, you have nothing to lose. The water and my supplements [I think] is what really cured me. Good luck and let us know how you get on.

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    • Posted

      Thanks for the note! I appreciate you taking the time to write this. I have a subsequent thread here about my latest update where my doctor feels low stomach acid could be the root cause. Interestingly, that would be in line with your probiotics, digestive enzymes and Vitamin D drops. This is almost exactly the course he put me on in addition to stopping prevacid.

      Very interesting... not likely a coincidence. Thank you!

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  • Posted

    HI I was diagnosed with chronic hives and angioedema almost three years ago and they were horrible.. At night i would get them really bad.. I took every antihistamine there is out there and nothing worked until prednisone.. of course i did not want to be on prednisone long term so I started getting the xolair shot about every 5 weeks about 2 1/2 years ago.. I have not had the hives at all for over five months.. before that i was getting them here and there with the shot.. But now my thyroid is under control and I think maybe that was it.. but i have weeks where i get really itchy so trying to stay gluten free as much as possible.. I wanted to get off the xolair but think i will just extend my time out instead as I sure do not want those awful hives again.. I also have arthritus which is another trigger..

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