Allergic to the Device

Allergic to the device.
I have spent the last 7yrs suffering from all kinds of strange pain in my joints, nausea, weakness, depression, fatigue, weak immune system and sore muscles. Turns out I’m allergic to the nickle in the device. Now we’re removing it. Hopefully I will feel better and doing all I can to stay away from nickle. 12% of women are allergic to nickle while 6% of men. It’s real folks you can be allergic to metals. Get tested befor any implant in your body.
Wish me luck I’m going under in 5 days. My kids have babysitters and my husband will be at my side as he forever is.

Oh my goodness. I had my done via the device just over 4 months ago. I wish you the best of luck. I will keep you in my heart and prayers

Hi, am going to have the device taken out soon too, ive been getting migraines and chest pains for 8 years now . It points to nickel allergy , are you doing it minimally invasive or down the sternum ? Hope and pray it goes well . Do let us know how you feel later. Take care

Ari, best of luck to you! Please let us know how you do :slight_smile:

I am new here. About one year post-closure (Amplatzer). I have done very well with no complications, EXCEPT ocular migraines, which most frequently occur an hour or so after I exercise. I do not believe I am allergic to the device. I had a nickel and titanium patch test done, which both showed no reaction. I do know that a MELISA test is thought to be more accurate; however, I emailed with someone from MELISA and filled out their questionnaire, and she told me that they would’ve expected me to have a positive nickel test if I were allergic to nickel (titanium is less reliable via patch test, apparently). But titanium allergy is apparently more rare, so I am not as worried about that… I also feel that I would likely have more issues outside of the visual migraines (like you, Ari and aenceledus) if I were allergic, and I do not. My theory, after much research, is that it has to do with blood flow and the body’s adjustment to it. After all, I have seen quite a few people who have issues with ocular migraines post-OHS as well, so it can’t all be due to issues with the device. Regardless, I am constantly on a quest to learn more so that I can make the best decisions for myself and my health.

aenceledus, are you going to be officially MELISA tested for metal allergy before making your decision??

Hi, I live in India so i dont think i can do the MELISA test. I have never heard of anyone devel/oping new onset of migraines with or without aura post OHS. This is the first time im hearing off it . Are you sure that these people did not suffer with headaches prior to OHS . I think they must have. New onset of migraine is strictly limited to device closure, there arent any cases in literature or with any of the doctors/ cardiologists ive visited. Kindly check the posts of fullenlove ( Katherine) where she states that people who had the device explanted had a limited allergic reaction that was only on the tissue surrounding the device. Prick and patch tests came out negative. Besides some people are more allergic whereas some are less allergic, hence the variation in symptom frequency and intensity. Do let me know what you think. I have a lot of data showing people who have removed the device and their symptoms have completely gone.

Hi there aenceledus. So I was not referring only to people who have new onset migraines, but rather anyone who has ANY migraines post-closure, whether they had them prior or not. Myself, for instance. These migraines are not new onset for me, as I have had migraines with aura for about 25 years, BUT they have completely changed post-closure. Also, there are people within my Facebook group who have had OHS and experience migraines afterwards – though I’m not sure if those are all new onset. Regardless, I think it’s possible that those who experience new onset migraines in particular may have a higher chance of device allergy. But I think that for those who experienced migraines prior, regardless of method of closure, the blood-flow theory is a strong one.

I had my asd closure on 10/19/17. Ever since, I have been swollen, have a rash, chronic fatigue, joint and muscle pain, chest pains that feel like someone is stabbing me and irregular heart beats. I have been to the doctors every three days— they have driven me prednisone, antibiotics, antiviral, pain meds, medication to regulate my heart beat, extra asthma medications and benedryl. Has anyone else experienced any of these symptoms? Is this my new normal? I have a mildly elevated wbc and rbc which another physician said was an autoimmune disorder.

Hi Ari, how are you feeling ? did you take out the device ?

I have not. Waiting for bloodwork.

Do you have any research articles or online links linking the device to your health problems ? Id love to have a look at a few of them . Am suffering from migraines coz of the device and honestly dont know what other harm its doing to me . Would be a great help

The patch test confirmed that I am allergic to nickel. Kaiser cardiologists said my only option is OHS, which I am very scared of.

Do you know if they are going to come out with a nickel free device soon?

You will be fine. I have a lot of research about people who have explanted the device for these reasons. They all are well. I am going to do the same soon .

Hello, My name is James and Im 29 years old. I had the Helex device by Gore placed in my heart for a PFO closure in Jan 2011. About 6 months after the device was placed I could still feel it in my chest and something just didn’t sit right. I was experiencing migraines (primarily migraines that didn’t have pain but the odd aura that makes it difficult to see which i rarely had prior to the device being placed. After the doctor checked the placement of the device he said “You’re fine there is nothing wrong”. I tried to chalk it up to “still healing” and being accepting of the fact I put a foreign object inside my heart and I was bound to feel a little different. In 2013 I began having some irregular heartbeats. Mild palpitations and spikes in heart rate during rest. Nothing too alarming but enough to where I went to a cardiologist and had an EKG done. They couldn’t find anything at all. Then I was on vacation and after a massage I had another heart rate spike but this time I went into a full blown panic attack which Ive never had in my life. Or at least thats what I was diagnosed with. Ever since I will get random spikes in my hear rate and palpitations. I also experience feeling like there is something stuck in my throat and continue to get aura migraines.
When my heart rate spikes it is completely random. Sometimes when I exercise it will occur and other times Ill be laying down watching TV and it will spike. Typically it will spike anywhere from 2 seconds to 5 minutes. Usually I can get it to stop if I bear down or hold my breath. It will literally go from 60bpm to 140bpm back down to 60 bpm all within seconds. During these episodes Ill usually feel a pressure towards the top of my sternum as if something is stuck or blocked.
I have worn heart monitors and have done stress tests (running on a tred mill with EKG hooked up etc) All tests have come pack stating nothing is wrong. Then about a week ago I had a flare up that terrified me. I felt short of breath, my heart rate wasn’t going down with holding my breath or bearing down and lasting about 20 minutes. I ended up taking a XANAX which did work but still took 20 minutes to calm my heart rate. I went to the doctor and was placed on another monitor but this time the doctor did in fact see that I was experiencing Atrial Fibrillation and referred me to a cardiologist for further testing. I have been researching things for a long time and this is the first group I’ve found that seemingly experience the same as I have. I go in today and I will be bringing up the Nickel allergy because I am in fact hypersensitive to metal allergies. I cant wear belt buckles that aren’t coated by something due to getting really bad rashes, I cant wear any jewelry due to the same reason. I even had a tungsten wedding ring that was supposed to be hypoallergenic but I also got bad bubbling rashes wearing it so I had to buy a gold ring instead and even that at times can irritate my skin and I have to take it off at night to avoid this feeling. Im very grateful that you all have shared your stories. This is the first time that it all makes sense to me. Ill update you all on my appointment today and if any of you have had the device removed Id would love to hear how you are doing now. This has been a complete nightmare for me. Being a very active 29 year old and feeling scared that my heart is just going to stop beating has been miserable. Im afraid to travel, play sports, work out etc. (Although I force myself to do these things it still concerning to me). Anyways thank you all for your sharing. I hope that the Nickel allergy is in fact the problem and hopefully this new cardiologist wont just write me off and tell me im young and will be fine. Thank you

Hi James. Sorry I took so long to respond to this, as I didn’t see your post until today, but I wanted to check on how you are doing now? Sorry to hear you are experiencing so many issues…

Unfortunately nothing new has developed. The cardiologists just want to put me on beta blockers and other medications to treat the symptoms vs figuring out what is the cause.
I had another doctor who stated its possible it was a reaction from the nickel in the helex device and he wanted to do a surgery to take it out. The surgery isn’t exactly easy on your body so I wanted to try alternatives before doing the surgery.
I found that once I quick using an E-cigarette my symptoms came down quite a bit but didn’t completely go away.
With all the research I have been doing I found that GERD has some similar symptoms and I just began taking prilosec OTC daily. Im on day 3 right now and I currently have not had any heart palpitations since trying prilosec.
Ive gone a few days without symptoms before so im not getting my hopes up that this is the solution. Ill definitely check back in if this does in fact turn out to be GERD or an acid reflux issue.
I would be pretty damn surprised if it is acid reflux or GERD but hey at this point it feels like anything is possible.