My Nickel Allergy to share with you ...

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MamaDi
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Joined: Sat Jan 27, 2018 6:40 am

My Nickel Allergy to share with you ...

#1 Post by MamaDi »

Hi
I'm new here and just want to share my experience with you all, incase someone can shed anymore light or maybe my info will help others one day.

I had my ceramic braces fitted, top and bottom, on 19th September 2017, so only just over 4 months ago. I am 41 (42 tomorrow!) and this isn't my first time with orthodontics as I had a plate brace with a head piece when I was 11- 13 years old too. One of my 4 children have top and bottom metal braces which have been on for a year and come off next month.

36 hours after having the braces fitted, my lips became sore, I guess similar to becoming chapped, but chapped lips isn't something I have ever suffered with so can't be sure. My lips were peeling constantly and I developed two nasty pus filled spots in the middle of my bottom lip. I knew it was obviously a side effect or reaction to the brace, due to timing and having never had the symptoms before, but it wasn't worrying me too much as I was in a lot of pain elsewhere in my mouth with the newness of the braces - I could barely talk and couldn't eat and this was consuming me much more. It took about a month for the pain to die down and eating to resume properly but the lips remained an issue.

Around a month after having my braces fitted, I started to feel very low in mood with no reason for it. I didn't want to speak to my family or friends, I just seemed to retreat within myself. I had recently started a life long desire of studying biomedicine and had been so happy, but found it hard to concentrate and retain information. I cried a lot, couldn't sleep at night, started getting night sweats and generally felt miserable.

Roughly at the same time I started suffering from burning eyes when I read, drove, watched TV and I was also having jerky muscle spasms, mainly at the end of the day. If I was relaxing in the evening (Reading, TV, in bed) my legs and arms would be jerking around like I was getting electric shocks.

None of these symptoms separately were enough to warrant a doctor's visit as they were sporadic and didn't stop me functioning daily, but eventually, in early December, I did give my Dr a call. I wondered if I was suffering with a hormonal imbalance (the low mood etc) and he agreed to do blood tests.

Inbetween this call and going for the blood tests, I started getting blinding headaches. As a person, I don't suffer from headaches. Stomach issues are my thing, never headaches, but I was waking up in the morning with them and no amount of medication could shift it. I also noticed that any exertion of exercise gave me a headache too.

A day or so after the headaches started, 19th December in fact, I lost all my taste buds (Glossitis), I developed deep cuts in the corners of my mouth and a condition called Burning Mouth Syndrome started too, plus a constant twitch under my right eye. I was in agony and utterly miserable. The day my bloods were taken (21st December), I cried like a baby at the pain of the needle, so unlike me. I've had literally hundreds of blood tests over the years but my whole body was hypersensitive and I was rapidly going downhill.

Christmas came and went in a blur, the worst Christmas I think I have ever spent. Not even necessarily due to the pain I was in with my mouth and head, but I didn't feel like me and I didn't understand what was happening.
I saw my doctor on 29th December (cried through the appointment). All my blood tests were fine - thyroid, hormone levels, diabetes, inflammation markers etc. The only issue was that my haemoglobin was ever so slightly low so, due to the symptoms, he put me on iron and asked me to go back for more bloods to see if I had a Vitamin B12 deficiency.
YES!!! I thought we had found the answer!!! It made total sense - a vitamin deficiency! I would be able to get injections and feel well again. YAY!!!!

But no, my B12 level came back fine, as did my iron and vitamin D, so I was back to square one and didn't even need to iron tablets anymore (which hadn't made any difference, I took them for two weeks).

I started to think I was dying and it reminded me of a time, five years ago, when I suffered similar symptoms. Back then, it lasted a year, I was tested for everything - MS, Lupus, Lymphoma, RA etc and nothing came to light. All blood tess were always fine. Eventually I was diagnosed with Fibromyalgia, a diagnosis I never believed in, it was a label given as they didn't know that was wrong.

After the news of my B12 I spoke to a friend about my current symptoms who happens to be a homeopath. She mentioned in passing that it sounded like metal toxicity. I didn't really think much of it, until I started looking into it. I hadn't realised that arch wires were made from nickel and that nickel is found in jewellery. I can't wear most jewellery due to scaly sore skin and, when in the form of earrings, they have to be removed after 10 mins due to pain, bleeding, crusting, swelling. I hadn't even put two and two together as it's been over 15 years since I work jewellery that would do this, and so I didn't tick a box to say i had a nickel allergy/sensitivity when originally getting the brace as I didn't know I had!

The following day, after research, I contacted my orthodontist and they asked me to come in. They told me it was rare to have a nickel allergy but removed 8 metal brackets at the back of my mouth and the lower archwire and replaced it with stainless steel. They told me to leave it 2-3 weeks and see what happened in terms of symptoms then go back. Within 36 hours the burning mouth had gone, my taste buds started to grow back, the cuts in the corners of my mouth healed, the eye twitch had gone and my lips started to feel better - less slimey, less flaking skin. I literally couldn't believe it! The headaches left, my mood lifted and energy levels began to rise. I felt good again.

However, after a week some symptoms did return and I think the braces may need to be removed completely as I believe stainless steel has an element of Nickel too and that is now the problem. The headaches are back and are definitely a "reaction' headache (I am allergic to cosmetics, creams, hairdye so I know what an allergic reaction headache feels like, where it is on my head etc).They have got so bad that I can't drive more than 10 mins. My doctor has arranged a brain scan to be on the safe side but it's purely precaution. Fatigue is killing me, I want my bed an hour after rising, I have a constant burning in my throat (the feeling you would get after vomiting) and my mood, even though slightly better, it's still not right. Memory loss is one of the worst aspects.

I have had every blood test done and there is nothing wrong with me medically to be causing these symptoms. I have booked to have patch testing done at a private hospital in March, so I can officially see my sensitivities - seemingly the most common are nickel, hair dye, cosmetics (all of which I have - I even have contact dermatitis from where my fork rests in my hand and where my mobile phone presses against my ear and temple - not that I knew that until recently). If only I had realised!

Incidentally, I mentioned earlier about the year of illness and similar symptoms five years ago. For a few weeks I had tried to find the relationship between that time and this, what could possibly be the same? That time I actually suffered from Optic Neuritis and lost sight in my left eye for a few days. Well after some delving and searching my memory, I have discovered/realised that those symptoms started exactly two weeks after having the ONLY amalgam filling i have fitted.

Patch testing will definitely be interesting!!

I know Nickel allergy is rare but it does happen and is awful when it does, so I feel sharing the information may help someone.

bbsadmin
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Re: My Nickel Allergy to share with you ...

#2 Post by bbsadmin »

Thanks for sharing your story. Nickel allergy isn't as rare as you might think -- and neither is latex allergy.

I hope that you feel better and that you can find a way to continue your orthodontic treatment. There are many hypoallergenic materials out there, so communicate with your orthodontist.

Be well!
I'm the owner/admin of this site. Had ceramic uppers, metal lowers ~3 years in my early 40's. Now in Hawley retainers at night!

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