...diagnose me...?

Symptoms & Treatments
1

I've been going through a different kind of weirdness these past 3 months. I get headaches and migraines on a regular basis, so I'm not new to them, as well as sinus infections. (Changed all docs at the start of the year - lovely insurance and all.) See the doc, sinus x-rays, tells me I have a sinus infection. A week later I feel like I'm starting to go absolutely mental, so I go back in. More x-rays. Sinus infection, ear infection, eye infection (oh yes, and a yeast infection from the antibiotics). Get a little Imitrex for the new and more frequent migraines. We did this a couple more times, added shots, prednisone, etc. Never did my sinus' drain, nor did I have a stuff nose. I told the doc, I have had tons of sinus infections, that's not what this feels like. This is completely different.

OK, Went to the ENT, sent for a CT. My sinus' are absolutely clear! This mean the symptoms I'm having must be neurological. (I previously had only been going to a rheumy for my fibro.) First visit to the neuro. He thinks they're migraines. I want to know, who seriously thinks a migraine will last 3 months??? And here's some of the symptoms - losing balance, some vertigo, dropping things, walking into door jams, ears popping (though they're perfectly clear and have NO damage), extreme fatigue, quick electrical shocks that go through my tongue, lips, eyes, and give my brain a quick shift, physically shaking, sometimes blurred visions, sometimes full on tremors, excessive floaters, feel like I've been punched in the nose, and all of the regular nerve twitches and typical fibro related things. My concern - I've had the shocks before, but that's been a withdrawal symptom. I haven't changed meds. I'm more off balance that usually, short term memory is worse that normal, the shaking, and feeling like I'm ready to just collapse.

(I had a full eye exam, peepers are still good. Blood sugar checked, it's good. All blood labs done, all fall in normal ranges.)

I have an MRI scheduled for next week. Is it bad that I hope they find something, just so there's something to be seen? Something concrete?

And seriously, who is on board with this being a 3 month migraine?

I actually just wanted to give people the background on what my real rant was going to be about, but it looks like I better break it down and stop here with this one.

I welcome any insight (unless you're going to tell me it's a migraine LOL), especially with the shocks and shaking.

HEEELLLLLLLLLLLLLPPPPPPPPPPPPP ME!

2

Any possibility of petite mal epilepsy?

3

I say call another doctor or write a letter describing what you are experiencing and send it to a few new doctors, so it will give them a little time to get there thoughts together. I think that for the most part, Doctors can get baffled to. It is not that they won't help you, but rather they just really don't know without first researching for more information. Is the symptoms you are having related to your fm?

I have discomfort in my head such as a feeling of inflammation right behind my sinus's. It is hard to describe. I want to say it seems as though it is going to hurt like a headache, but then it just feels like a ball of inflammation as when you have allergies or a cold and your nose is stuffy it doesn't really hurt, but gets to that point at which it would start. About 20 years ago, my sinus's were always stuffy, never did they drain. It was so bad my eyes would not stay open on their own. So I had a ct of my sinus's and the doctor recommended a laser surgery, I had it done, it was the best thing. No more problems with the sinus's. My nose is not stuffy anymore. But the annoying ball of inflammation is still behind my sinus's. Never goes away until I take a pain reliever. Then just like the other pain, it comes back.

I had a ct scan of my head and it showed nothing wrong. I though that it related to the extra bone growth in my upper mouth. So I asked my doctor and she said no it is not related. I did feel the bone growing in my mouth. It has stopped and the dentist called it a 4 letter word that I can't remember, but it is common in some people. The dentist telling me this had the same thing only he has it going around his entire gum line, all over the upper jaw and lower jaw.

I still have not figured out what this lump, ball or inflammation is, or what it is about. Ct scan says nothing wrong, sinus's are working fine, I can still see, and hear and speak. I should write a letter to a few doctors asking them what they think it might be.

Some things take longer to surface.

4

Hello,

Just want to add my experience. I too have had many sinus infections, had allergy testing,which showed no significant allergies. Then onto the ENT, who ordered a cscan of the sinuses. A very deviated septun, but clear sinuses. I described my ear pressure, popping. My ears were clear, of course they always are! I complained of the excessive congestion, mucous I constantly have and the throbbing headache on the back of my head.The doctor suggested a migraine diet. I was ready to scream, it wasnt due to migraines! But decided to follow the diet, no wine,processed food or dairy. The processed food wasn't hard since i eat pretty clean. Instead of milk i switched to almond milk. Within a week my congestion went away, my sinuses feel better and my head throbbing has gotten better! I'm not saying its a cure all. I got a sinus infection last week, another zpack. I read somewhere that fibro changes our mucous! It's thicker then the non fibro person.

5

Good thought. It's been some years since I had a sleep deprived EEG or EKG (whichever). And none occurred while I was hooked up. I did consider this for a while, but I don't really fit into the "losing time" part. Neuro did put me on topomax to regulate the headaches, but it's also a seizure med. Maybe it'll take care of both, if that's the problem?

6

Indescribable pressure behind the eyes and nose is accurate. I was almost hoping my sinus' would be a mess so I could have that surgery - I hear people that have had it get far less sinus infections. Happy to hear it worked for you (other than the mystery inflammation, of course).

Interesting about the extra bone growth in the mouth. Does is cause pain while eating?

7

Yikes! A migraine diet. That thought scares me. It may not be bad, but knowing there will be restrictions... I don't deal with "no, you can't do that" very well. LOL.

Glad you brought up the part about thick mucous. A few years ago I almost drove to the dentist to use their vacuum in the back in my throat. I still think about it, and I'd love to invest in one! That stuff just hangs out and doesn't move, unless I cry. Crying is a mucous motivator.

Thank you for sharing. My MRI is next Monday. I'm just ready to get it over with!

8

OMG!!! I am experiencing all of the same symptoms as you are. My migraines start out as just a headache, then go into a full blown migraine, and this has been going on since Janurary. The only difference with me is in addition to everything else I have been experiencing numbness in my lips, and around my nose and eyes. My labs showed very low red blood counts and my hemogoblin is down to 9.8. Docs all say that my migraines are due to the low hemo and red blood cell count, but they are urging me to get a colonscopy done, and I am not wanting to do it.

9

Alice, get that colonscopy done! It could save your life. Everyone over 50 or with a family history should have one: Along with the sinus pressure does anyone else have acute sense of smell? Sometimes i smell cigarettes and no one is smoking, mentioned this to the rhemy and he looked at me like i was nuts. Need to find a new rhemy:

10

I get the tingling/numbness with the shocks in my lips and through my eyes. But all of my bloodwork is normal.

I had an EGD and a colonoscopy done at the same time, so I was knocked out for mine. I think the worst part is the prepping for the colonoscopy! Get it done. You'll get a couple new little photos to add to your wall. :D