Help. I don't want to overreact.

[NikkiNicole]

My health has been declining steadily for the last couple day. I shrugged it off to some bad diet choices, and lack of sleep. But, now I am scared.

My brain is buzzing. Like it feels like it's either swelling inside my head or literally buzzing with electrical current. I can feel my brain. I am also lethargic, out of it, half my tongue is kind of numb, I have a weird metallic yet not coppery taste in my mouth. I feel like I could just keel over and fall onto the floor if I let myself. I keep hearing these high pitched frequencies ... like tinnitus but it's strange it's like there is more than on all at the same time.

I have never felt like this before and I am concerned there could be something neurological related going on. Like, worse case scenario ... seizure or stroke.

I have never ever ever ever felt something this bad in my brain. I have pressure in my sinuses like I have for the last couple of days. I don't want to overreact but ... I'm actually a little scared.

I am seriously contemplating a trip to the emergency room when I get off work.

Has anyone else ever felt this?

[godgirl]

Well, I've never experienced anything like that. But it doesn't sound good... Especially if you feel you could keel over/pass out. I'd be feeling the same as you, though, if it were happening to me - not wanting to overreact. But that said, I'd still go to the ER. Seriously. No clue what it might be, but you should probably seek medical attention. And maybe before work is done? Keep us posted!

Jen

[Jennie]

Hi Nikki

I've never felt like that other than tongue numbness when I had a bad migraine. Sounds like there are too many symptoms to ignore though. Please please please get it checked out.

Hope you feel better soon.

Jennie

[annekat]

Follow your intuition and go to the ER. This sounds scary. I hope it is nothing serious but you don't want to take the chance.

[drz]

I would go to the ER too. Strange tastes and some other weird stuff can result from a drug reaction and those can require some quick action before things get worse. Anyway you will feel better after checking it out even if they don't find anything serious and that will reduce your stress and anxiety which is very important to your health too. Remember Jacks advice"Just because you have Wegs doesn't mean you can't also have other health problems too."

[mishb]

Nikki, if it doesn't feel right - then it generally isn't :crying:

I seriously hope that you got down to the ER to get it checked out.
It is always better to be safe than sorry.
If it is nothing, then you can be satisfied that you were checked over, and then you will be able to rest easy and ease your anxiety.

Please tell me that you went

[Psyborg]

I agree...get to the doctor.

I did have a metallic issue with my mouth. When I investigated it turned out I had some fish oil capsules that had gone bad...so nothing related.

I am flaring now myself (as far as I can tell anyway) and I too am having head and ear issues. Never had sinus issue previously so I'm not 100% sure they are Wegs related. But the ear ache has lasted through three rounds of antibiotics so I'm guessing it is.

[Debbie C]

Nikki, I agree with everyone else,it may turn out to be nothing serious but better safe than sorry. Can u leave work early to go. Please be careful driving.

[whatthewhat]

Not to be nosy, N, but just wanting to hear an update that everything turned out okay...

[LisaT]

I hope you went and that everything is ok. I've had weird echoey tinnitus along with headaches and sinus pressure lately too. I feel like it's all related and all WG/GPA. I get my brain MRI results tomorrow and am very curious... I know what you mean about feeling like you could keel over/pass out, and feeling your brain. I feel like my brain is swollen, or the stuff around my brain is swollen. I have had the headache and tinnitus go away and then come back so I'm not totally panicked. I also think if there were anything really awful in the MRI they'd have called me and told me to get my ass down to an ER rather than booking me an appointment two days after they received the report. Have you had an MRI of your head or a neurological exam? Since the disease can affect our brains it's probably a good idea. Hopefully it's not that. I know migraines can cause all kinds of strange symptoms and it sounds as though you're working really hard through a flare... But best to rule out brain involvement. It sounds as though head MRI to rule it out is pretty common among forum members. (But that actual central nervous system or brain involvement itself is quite rare.)

[annekat]

Since you are mentioning MRIs and the brain, I'll mention that my recent MRI, done because of double vision, came back with everything in the brain and the nerves and muscles around the eye looking pretty normal. The report did mention the extensive erosion of bone in my sinus and nasal area, and the the eye doc hypothesizes that my double vision is related to that, since some of these thin bones form the floor of the orbital cavity. However, he hadn't gotten the pictures yet, and I'm waiting to talk to my ENT after I'm sure that he, too, has the pictures, since he knows more about this erosion and where it is. Also mentioned was opacity in the mastoids and inner ear cavities. Already knew the ears are full of something, not sure about what's in the mastoids, another ENT issue. No pain there to indicate an infection. Maybe fluid, wouldn't know how serious that is or if it could be drained.

Anyway, none of that had to do with your symptoms, Nikki, but an MRI might be in order. However, we don't seem to be hearing that you went to the ER or that you are still feeling bad, so I hope it was something temporary!

[LisaT]

I'm glad that your MRI was at least mostly normal, Anne. The double vision must be really hard to deal with. I had fleeting moments of that today, but I wasn't sure whether it was just headache combined with trying to read and focus further away at various times with my still relatively new progressive lenses... If it continues I'll get it checked out. I hope they figure out what the opacity is on your scan and that it's not something serious.

[annekat]

I'm glad that your MRI was at least mostly normal, Anne. The double vision must be really hard to deal with. I had fleeting moments of that today, but I wasn't sure whether it was just headache combined with trying to read and focus further away at various times with my still relatively new progressive lenses... If it continues I'll get it checked out. I hope they figure out what the opacity is on your scan and that it's not something serious. Thanks, Lisa. The double vision is mostly manageable; it's worst at distances and when looking through the top part of my field of vision. I have progressive lenses too and remember noticing that when I first got them. You do get used to most of the distortion, or your brain learns to ignore it. As for the opacity, I'm pretty sure in the middle ear it is something like "glue ear", or thickened fluid, and am wondering if it could be the same in the mastoids, which are right behind the ear, I think. An accumulation of years of the ears not draining properly and it now being too late to try tubes or anything. I might have to lean on my ENT to really explain what is going on in there; I suspect that what was described in the report is stuff he already knew about. He is soft spoken and a little vague. Doctors! Arrgh!

[godgirl]

Hey Nikki. Any updates? How are you doing???

Jen

[gilders]

On Nikki's blog she used the past tense when she wrote, "I got fed up that some scary symptoms were a "headache" so I didn't go to them with this." That was 2 days after she started this thread, so I'm hopeful she's now doing well.

I googled "Nikki nicole" to find her blog, but all the results were about a transgender person :ohmy: I retried adding "wegeners" and found it. I wonder if Nikki has tried googling her own name or maybe the transgender person results only appear on UK results?