Cholinergic Urticaria has ruined my life
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Hello.
I am a 28 year old male living in the UK with my parents. I weigh 70kg and am 186cm tall. I have been suffering with Cholinergic Urticaria for 9 months. I am in desperate need of help.
Previous to developing this condition, I had no health issues whatsoever.
I have been a competitive middle distance runner for the past 7 years, training every day. I have been heavily active all my life.
This condition materialised in the space of approximately 2 weeks. In that time I became entirely incapacitated in my ability to run.
As a result I visited my GP. A blood test revealed a slightly underactive Thyroid. This became the focus for my Doctor and my skin condition was ignored. Avoiding the immediate prescription of hormone replacement therapy, a repeat blood test was scheduled 2 months later to assess any change in the function of my Thyroid. Sure enough, and without any intervention, my TSH had come down significantly. Although not yet back in the 'normal range', I am schedule to have yet another blood test next month.
My doctor failed to acknowledge any relationship between an underactive Thyroid and Urticaria, and whenever the question was asked he became evasive.
My Urticaria worsened, it's affects no longer confined to when I ran but also when I walk, take a warm shower, lift something, feel stressed, anxious, if I'm in a warm building, when I sleep, when I'm in a car, if I trip. Almost everything I do is now affected, rendering whatever I am trying to do physically impossible. My outbreaks are not just itchy, they are excruciatingly painful. I often feel light headed and nauseous during an outbreak and have nearly passed out on occasion. I have to withdraw myself from whatever situation I may be in, in order to cool my body.
I worked for 6 years as an Account Executive, but last year decided to try something new. I have since lost my job as a Postman, having fallen short of the attendance standards required during probation. I started in January, and was fit work due to cooler weather conditions. In May, whilst on delivery, I was unable to continue. I was unable to work and after 15 days of sick I was dismissed.
Because of the warm summer weather I am extremely unlikely to find alternative work. The thought of sitting in an interview wearing a suit in this temperature causes me to itch. Driving my car is often not possible, nor safe, and I cannot wear anything more than running shorts and a loose fitting t-shirt. My aforementioned symptoms of Urticaria are simply not conducive with job searching/working. Despite having been in full time work since graduating, I cannot apply for Disability Benefit because I have too much money accrued in savings, most of which I had intended to use as a deposit on a house. I cannot apply for Job Seekers Allowance because I am unfit for work.
I was prescribed some Cetrizine, it did nothing. I was prescribed Cetrizine in conjunction with Monteluklast, it did nothing. I was reffered to the Dermatology unit at my local hospital. I provided a physical demonstration of my Urticaria and was prescribed Fexofenadine, it did nothing. I have since been placed on Fexofenadine 180mg, twice a day, and Propranalol 40mg, twice a day. Despite saying he has never seen such a severe case of Urticaria, the specialist doesn't want to see me again saying he has very little more to offer in the form of treatment options. 4 weeks on and despite feeling ill most of the time, these tablets are doing nothing.
I have scheduled an appointment in September with a separate Dermatologist in order to get a third opinion.
I am depressed. My life has stopped. I am now, as I am everyday, sat on my bed. Confined to living a solemn and sedentary existence. I feel lazy. I feel worthless. I cannot socialize for fear of suffering an outbreak in public. My fear is only further compounded by the thought of suffering an outbreak and being unable to affect it. The pain is shocking. I cannot imagine the toll this has already had on my health both mentally and physically; the physical pain of an outbreak seems an entirely unnatural and extreme stressor for my body to have to deal with on a daily basis. As is my transition from running 75+ miles per week, to doing nothing at all, alongside my rapidly deteriorating mindset.
It's formally documented that this debilitating condition has a greater impact on ones quality of life than that of skin cancer, yet because it's not life threatening in itself it seems no one wants to know. Why is so little known about a disease with such devastating consequences?
I need help. I life like this is a life I do not want to lead and will not continue to lead if I do not witness a significant change in my circumstances. I've had enough and am now very suicidal.
12 likes, 237 replies
matthew20269 CU12
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reshell1975 matthew20269
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I hate that you had to stop playing sports, but good luck with everything.
reshell1975 CU12
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sheila62513 CU12
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I had a biopsy taken last week which the dermatologist explained may provide some answers and thought my immune system was working too hard.
renni01775 sheila62513
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I was prescribed evion cream which contains vitamin e, helped me a little but some time back i started on vitamin e caps. One every day. Can't tell you the significant difference they made. As if they provided the required oiliness internally. It takes almost a week for the dry scalings to disappear. You can speed up this by smearing oil rather than creams. I sometimes still get scaly itchy skin leading to painful cuts but it is at least manageable now. Also take care of your digestion, food that is light to digest will make a marked difference. Let's hope this works for you as well.
sheila62513 renni01775
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grace65574 CU12
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desmond01416 CU12
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I've been on Ciclosporine for 2 months now. It's definitely helped my urticaria (which is cold, not cholinergic). The rash is less than 50% sometimes 25% or even 10% of what it used to be. I've been ok side effects, sporadic nausea the first two weeks which passed. Then tiredness which is lifting after 2 months. I've had a little more hair growth on face/neck/arms, but that's ok as I'm a 30 year male and not hairy to beging with. Gums are fine so far. It's been worthwhile, but I'd hoped it would get rid.
I'm still getting periods of intense itching 3 nights a week though. I'm thinking of talking to the doctor about trying Gabapentin for that. Doxepin worked for that before but didn't like the serious side effects. Paroxetin helped too but again bad side effects for me.
londonhermit CU12
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This only happens to me when I walk and haven't had my loratidine in a while. It happened twice last week 7/2016 and the week before. Mines happens in the heat and the cold as I live on the northern East Coast of the USA. I will begin walking and all of a sudden my feet and waist begin to tingle and itch. The horrible sensation goes to my legs and bottom. I also notice I become "grossed out" by things i see on the side walk and become irritated. However the loratadine does help.
KarmaHealer CU12
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erin39309 CU12
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So sorry to hear that so many people out ther suffer with this awful condition. I had never experienced hives until about 2 years ago when I started on an antidepressant (one that I had been on in the past and never had a reaction to).
I tried another 6 different types of antidepressants and it seems as though I'm allergic to an ingredient in each one of them which is horrible because I honestly feel like I've never been so down in my life and although I have wanted to stay away from what gives me this reaction, I can't carry on without medication and a new one I've just started, has once again given me hives ??
The weird thing thing is, there was a period before any of these reactions started, where I took the antihistamine, phenergen for around 3 months for sleep. I strongly believe my sensitivities were actually brought on by taking too many antihistamines. The first two posters seem to have had a similar experience. I really don't know what to do. If anyone can send any words of wisdom my way I would greatly appreciate it.
desmond01416 erin39309
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I'd probably say get a referral to an immunologist to discuss cycosporine, mycophenolate mofetil, dapsone, xolair or any of the other drugs that work on the immune system. It's usually an immune system problem at root. Cyclosporine is the only thing so for in nearly 4 years that ever causes the rash to decrease for me. Other things worked on the itching, but nothing dented the rash. Cylosporine didn't agree with me personally in terms of side effects (persistent nausea, tiredness, muscle weakness, high blood pressure), but you might be ok with it. It can also improve the condition for some people even after stopping it.
Antidepressant also don't agree with me. Apart from Doxepin which helped me through the worst period of physical suffering, insomnia and anxiety. Doxepin is an old Tricyclic Antidpressant and can help with the physical suffering if it is bad. However, it made me extremely drowsy and caused significant appetite/weight gain. More recently, Propranolol helped me with anxiety and reducing itch but triggered Asthma. I'm trying Gabapentin at the moment before MMF, and so far it is helping to reduce anxiety and increase physical comfort, but I seem to be one of the few people that it causes to sleep less, rather than more.
FWIW I think it's not entirely strange that you would have a problem with antidepressants. Serotonin as a chemical can cause itching itself and recent interesting research on the itch-scratch cycle has started to show the relatioship between serotonin and itch. For me, they actually helped the itching a lot but then caused stomach/nausea, restlessness and early waking insomnia. My wife insists that SSRIs make me go a bit crazy, and I think she is probably right. My mother had schizo-affective disorder and took her own life and my brother is bi-polar, so there are some bad genes/patterns in my family that make me extremely cautious of the mood swings that anti-depressants can cause.
Also, it's worth bearing in mind that anti-depressants can make you more anxious at first as they block the serotonin until it tops up to a point where you start to feel better.
Have you considered whether anxiety itself could actually be a significant trigger for hives? Has there been any major life change in the last 2 years? If anxiety is a possible trigger, it might be worth looking at anti-anxiety drugs that are not anti-depressants. Beta blockers and gabapentin come to mind, but there are others. The latter helps with anxiety, sleeping and itching for me. And once those issues were addressed, my mood improved and I realised the urticaria problem itself was making me really quite depressed and anxious which were in turn making the urticaria worse, in a vicious cycle. Maybe talking therapy could be helpful, if even only to deal with the double suffering of depression and hives. Personally, I think doctors drastically underestimate the mental suffering that goes along with urticaria. Anxiety and depression seem to be go hand-in-hand.
erin39309 desmond01416
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Thanks for your reply ?? I'm definitely going to look in to seeing an immunologist. I can't take it anymore. Horrible that when depression strikes and it feels like there is nothing else you can do except try a medication, people like us can't tolerate them. I've just started on Vortioxetine and I got hives on the third day but they haven't been back although I have had severely itchy skin at night minus the awful wheals and rash.
I couldn't agree more with Dr's underestimation of the psychological effects that these conditions come with. If I wasn't depressed before, hives absolutely pulled me down. Not to mention as you said about the Doxepin and other meds, the side effects that go hand in hand with trying a bunch of different meds because none seem to work. I gained 14kgs last year when being changed every 2 weeks to a new antidepressant each time, which again, knocked me down. Plus the zombie symptoms of drowsiness and altered cognitive effects (not good ones) make every day living hard enough let alone trying to hold down a job or study.
That's when they finally put me on Propanolol as well which has been an anxiety lifesaver, the same as you!. I swore off medications since October last year but my mental health has never been in more danger so I had to bite the bullet and try one more. I tried multiple psychologists who wouldn't treat me unless I was on antidepressants or benzodiazepines because I couldn't take anything out of the sessions when all I did was cry and shake and not remember a word they were saying. I haven't had a significant life event that made this happen. The only thing I can put the mental health issues down to, is marijuana and ice addiction. I've been clean for 2 years and 4 months but i think maybe I did some damage.
The hives have only ever come in line with medications and last for another 3 months after I cease them. Seems as though I might be allergic to a binding agent in these pills but I haven't met a doctor willing to research any further. I'm in Australia by the way, not that it makes any difference but I guess I've been disappointed with how my situation has played out and I'm praying that the Vortioxetine can help me. I'm studying nursing and struggling more than ever to maintain a good cognitive state. I can't remember anything or concentrate for the life of me. My relationships with my partner, friends and family are going down the drain.
Sorry I think I went off on a tangent there but this is the first thread where I feel like people understand. I hope everything works out for you!
desmond01416 erin39309
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Yes, I understand completely, it has really felt like my life has been in tatters at times. And dissapointingly, a lot of friends and family can leave you isolated when they underestimate or don't understand the suffering.
I've just been coming off Ciclosporine (which actually worked BTW - but bad side effects for me at least). That actually seems to have diminished the rash significantly and maybe helped somewhat with the itching. I've been on Gabapentin 1 week now after coming off Prozac and I am actually finding it super helpful. I feel much less anxious (in fact anxiety is gone) and feel more like myself than I have done for nearly 4 years. Also, it is helping with with sleeping, and is dulling the itching which itself is helping me to not use alcohol and sedating antihistamines for sleeping when itching/insomnia is really bad, which helps my mood and anxiety. A good cycle! So far, I am optimistic about Gabapentin.
Although, I'd be wary if you have a tendency to misuse drugs because Gabapentin or Pregabalin because it can actually feel a bit like a high at higher doses and builds a tolerance and has a nasty withdrawal.
Just a question, do you think the anxiety or the depression is the bigger issue. Because if it is the anxiety (and the fact that propranolol seems to help suggests that), I'd look more into anti-anxiety treatments than depression treatments. I know you feel the antidepressants aren't helping because you are allergic to them, but I suspect it could be more because they are affecting your brain/psyche in ways that aren't helping. Lots of people will feel more anxious the first 2-3 weeks of antidepressants. But if they don't agree with you, maybe insist on better anxiety treatment/medication/therapy instead? Perhaps try and find a counsellor, therapist or psychologist who is upfront from the beginning in NOT favouring antidepressants as the first or only course of action? Antidepressants can really not agree with some people, I've seen family members, who were bipolar rapidly cycle from depression to mania or psychotic episode or vice versa on them.
erin39309 desmond01416
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Sad but true that people around you start disappearing as things get harder. Which then adds to even more suffering. It's an awful vicious cycle !
Sooo good to hear that things are looking up for you after coming off the Ciclosporine and starting Gabapentin! It's amazing when you finally find something that makes things significantly better instead of a quick fix to just get a good nights sleep or a few hours of escape with calmatives or drinks etc. I'm beginning to feel the same way with the Vortioxetine! Starting to feel comfortable again in social situations and haven't had to take any propranolol in the last 6 days because there's been no anxious heart racing ! Maybe we're both getting the break we deserve !! Just got to keep this good feeling and get the brain function sorted out and I'll be absolutely stoked
I think I would definitely struggle with a drug that has the tendency to give any kind of upper feeling but the same as you, I'm incredibly optimistic about this medication!
I think depression is and always has been the main issue its just the worse it got and the more antidepressants that gave me hives, the worse my outlook on getting better was and the worse the anxiety became. But I'm really not sure because with the anxiety came some awful paranoia so I have definitely wondered if there is something more sinister going on such as bipolar or BPD but in in the process of finding another psych because my last one refused to put a name to my symptoms as she said it "didn't matter" needless to say I never went back for a second appointment with her lol. Definitely going to monitor the progress with these meds and if at any time it doesn't feel right I'll be straight onto my GP. Just so incredibly happy at the lack of hives and other side effects ! I hope everything keeps going well over your way !!
desmond01416 erin39309
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I started seeing a psychologist yesterday and me a different consultant today who was a good listener. I also started the Mycophenolate Mofetil today and the first dose didn't cause nausea yet. So things are looking up somewhat and it's summery this weekend, so my cold hives should be calmer.