Strange Symptoms--eyes, face, back

[Poohbear]

First off let me say, I do plan to call my Dr in the morning to see where I should start investigating (do I start with x-ray, neurology etc). I called my neurologists office on Friday afternoon and was told I should go to the ER since these were new symptoms. I didn't feel they were "emergency" plus, the ER is usually just there to tell me I'm not dying in that moment and go see my Dr. AND, around here they are asking people not to go to the ER unless it's dire emergency. We have so many Hurricane victims being brought in that the local hospital ER's are devastatingly busy (they were prior to this....most times I go there are people lined up on stretchers in the hall and people never get a room before being discharged).

Anyway, starting on Friday when I chew I get sharp shooting pain behind my left eye. I don't get this when I clench my teeth or any other time aside from chewing. All of my teeth feel fine so I don't think it's a dental problem.

The few times I've sneezed since Friday the right side of my face goes numb and tingling for a few seconds (about 20 seconds). Yesturday and today, out of the blue I will get these sharp pains at the top of my ear. It feels like a sharp bite from an insect or something only nothing is there and nothing really bit me.

This morning I woke up with my entire left side from the occipital muscle all the way down to my lower back in spasm.

I've had some back pain for several weeks now. Right on my spine about mid to lower back. I first noticed it when I was preparing to move but suddenly last week (with no warning and no reason I can determine) it just got worse.

I can't take pain meds or antiinflamatories. I have tried heat which doesn't hurt but doesn't seem to help. Ice makes things feel stiffer.

Anybody ever had anything like this? I don't really have a family Dr so I guess I will call the Neurologist and hope that he will order x-ray or CT scan of my spine to first look at that (I can't do MRI bc of pacemaker) and then see if these other symptoms are correlated somehow.

I do have problems with migraine but I don't think these are migraine related.

[Guest Finrussak]

I have had so many many years ( nearly 15) of weird stuff that its likely Ive had at 1 time or another some symptom or other. I very often had ( when flaring with my Lyme) what my neuro calls "transient neuralgias"...which I think is " nerve pains that go away and we dont know why" sharp stabs, creepy crawly feelings, numb tingly things; and especially affecting the face and sense organs (eye, ear, nose etc) are all what we "lymies" have. I hate to say this becasue it sounds like all I see is "potential Lyme"...but so many people I know with unusual nerve symptoms and dysauto sx...end up having a tickborne infection!!! There are even quite a few MS people who find out they have Lyme etc...I would feel better if you mentioned to whichever Dr you end up at ( and my opinion is a neuro is a great place to start as long as he isnt alarmist and runs for the spinal tap needle right away) to test for all the tick bornes...right now there are about 5 or 6 and despite what some Drs say in the southeast...they are ALL endemic...

as for immediate relief until your appt...sorry but I just checked with a few fellow Lymies and NOTHING seems to help...except time...one gal said that very rarely gentle massage eases it a bit...it seems that extreme temps ( ice and heat) aggravate the already angry nerve endings...and antiinflammatories arent a big help either so dont fret your inability to take them!!!

sorry cant be more help...I know how annoying nerve pains can be

[OCsunshine]

Well I know we all get very unusual symptoms that make our doctors raise their eyebrows and frown like they're trying to multiply 456,603 by 72 in their head... and they just can't figure out!

Many years ago I started getting this WEIRD pain symptom in my back. I would feel absolutely fine (well as "fine" as we folks can be) and then all of a sudden I'd get this 'shot' up my back. The best way I could describe it was like someone set my back on fire and then stuck duct tape to my skin and then ripped the duct tape off REALLY fast. It would be excruciating- tears would come to my eyes- and 3 seconds later the pain would be gone. It was that fast- but it was just awful.

I told my osteopath of neurology what was going on and he said it sounded like 'nerve' problems in my back. He felt around there, worked on me for a few weeks- he gently manipulated my muscles and got my blood flowing better and since then (about 6 years?) I haven't had that problem.

Of course our pains and our causes are different for all of this, but I wrote to say that there is probably a specific cause and probably a solution. Sometimes our symptoms are unexplainable, but sharp pains like that probably do have issues with your nerves that might be able to be worked out.

Let us know how it goes!

[Madwife]

Hi there!

Not much to add but I always get sharp left eye pain prior to collapse and this continues for a couple of hours following!

What wonderful and weird beings we are!!!

Hope u have some luck with neurologist.

Take care.

[mngirl]

Wow! You sounds JUST like me. My head pain though is from hitting my head about a year ago while cleaning and it STILL hasn't gone away. But as for the tingling and the facial numbness you hit it right on the head. Mine is just about CONSTANTLY on my forehead then down into my eyes, my checks and chin. My doc said that because it isn't completely on one side or another he has a harder time figuring what it could be from. If it was one-sided they would think Bell's Palsy.

I am going to the U of MN tomorrow to talk about just this! I will let you know what he says! I am seeing him for a BUNCH of issues (RSD in my rt arm, also starting to happen in my left arm), my head (the occiptal nerve just can't settle down and causes pain in my neck/shoulder and back), and my POTS. I don't think that he can give me any advice on the Addison's Disease, but we will see.

I hope that he can provide some answers and hopefully some relief. I think that he is going to try the new med Lyrica...I little nervous about that since it just came on the market here 2 weeks ago.

Wish me luck!

~Lisa

[Poohbear]

Lisa,

I do send you BUNCHES of good luck your way!!

I hope the Dr is able to help you and figure out what is going on.

I called my neurologist this morning and his nurse gave me a 1:30 Appt today. I hope they can do something or at least tell me what is wrong. The pain is so bad at times I feel I'll end up "going crazy".

Let me know how your appt goes.

I'll post on my experience as soon as I can.

[mngirl]

The U of MN - What a WASTE OF TIME!!!!!

I actually thought I would get some answers and all I got was the same crap I have been hearing....

For my rt arm, he said go to a pain clinic. For my left, he wants to do an EMG, but no matter what the results, he would never do surgery given what happened to the rt one.

My head/neck/shoulder...he is also going to write a letter to my insurance to see if he can get the Botox injections approved...after 3 denials already I don't have much hope. He is telling me that he thinks that they are migraines...which 3 other docs have told me they are not. He recommended some drug but we dismissed it when he said that it causes birth defects during conception...not that I am planning on having a child any day soon, but that is the LAST thing I ever want in my system especially when it is KNOWN to cause problems.

The POTS...well, he basically said that we are on track. I told him about not being able to eat and he said that if it is due to the meds, that HOPEFULLY over time that will go away! OVER TIME?!?!? By that time I will weigh only 2 lbs!!!!

SO...what do I do? He told me to go back to Mayo to see the neuro there for my POTS (which I wasn't planning on going back to since all I got to my questions were answers of someone who just thought I was a stupid person for asking...I don't need that kind of doc).

I am so lost right now. Tomorrow I go to see my internal med doc to review what I learned today...I can't imagine what he is going to say. As of today I think that I am honestly depressed...It all feels totally hopeless...I should not be feeling this at 32 years old!!!!

Sorry to be such a downer...I just don't know what to do anymore...

~Lisa

Lisa,

I do send you BUNCHES of good luck your way!! 

I hope the Dr is able to help you and figure out what is going on.

I called my neurologist this morning and his nurse gave me a 1:30 Appt today. I hope they can do something or at least tell me what is wrong. The pain is so bad at times I feel I'll end up "going crazy".

Let me know how your appt goes.

I'll post on my experience as soon as I can.

<{POST_SNAPBACK}>

[Poohbear]

Lisa,

Don't give up!! You can rest but then you have to find the fight in you to keep on keeping on until you get answers and feel better.

I know all too well the frustration of dealing with Dr's.

I am lucky in the sense that right now even though none of my Dr's really knows what to do for me they try to help in ways they can. We joke about certain things. Like today my Neurologist told me I just keep confusing him and making him learn new things.

What's RSD that you refer to? I am not familiar with that term.

I was told that most likely my back pain is muscle pull or spasm; since I can't really take much in the way of meds or soak in hot tob because of bp issues then he said to rest and take it easy. I guess I'll be on my back for a few days.

In terms of the pain behind my eye, face going numb etc. he says it sounds like trigeminal nerve although he implied it wasn't typical presentation. We are going to try a very low dose of some type of medication to see if it will help calm down that region of the brain. None of the drug stores had it in stock so it has to be ordered and hopefully will be in tomorrow. The pharmacist said it can cause low blood pressure however, since I am starting out at 1 cc (= 1mg) and typical dose is 10mg we are hoping it will be enough to help but not enough to effect bp.

I'll let you know if I get any relief off of it but it may be a few weeks before I know. I don't know if it's something that would help you or not.

What have the Dr's told you about migraine? I ask because in my case I have MANY weird migraine aura symptoms that are not common at all. Several Dr's said I was having migraine issues and I didn't believe them at first but over time I've realized they were right. It's a confusing topic but in people with dysautonomia it's common and is a sign of brain stem issues.

Treat yourself to something relaxing and enjoyable tonight.

Good luck tomorrow!!!! Oh, Ask your internist about checking your thyroid. I was told a lot of these odd pain issues can often be thyroid problems. In my case the thyroid issues just complicate things.

[steph37822]

oops