headaches with diabiliting systoms

I have recently seen a neurologist, they sent me to the emerengcy room for drug screening and a physic eveluation. I passed all the drug and alachol testing and the er doctor in Gesinger in Wilkes-barre did not feel I had any physic issues.  The blood work was all normal and so was the catscan.  He gave me a shot of compasine and Dilodin.  He saw a huge change in my ability to think, walk and talk.  He feels there is something very wrong with me but I don't know where to begin looking. I am so bad that I can no longer drive or complete my daily tasks. What would you recomend I do?  When Drs. see me they think I am either on drugs or drunk.

[BCT88M]

I have not gotten a responce from the last question I asked.  If I am mistaken how do I retrieve your suggestions?

[oliviamarie12345]

this happens  a lot, when I was going through my medical mystery I was sent to a pain psychologist. Fortunately, she believed me. I was watching a mystery diagnosis show once, and a smart doctor was on the tv and he said when doctors can't figure it out, they turn to "it must all be in your head." I was sick for almost two years, and I was finally diagnosed with addisons. Anyways, my advice to you would be this: find a good general practitioner who believes you. I hate to be sexist, but in my experience, women can be better at this. (although my gp is a male, it just depends. also someone with lots of experience) When they send you to specialists, if that particular specialist seems like they are not listening or don't believe you, move on to another one. My neurologist says a ct scan is not good without dye either, so try to get an MRI with dye. Also, I would suggest maybe an endocrine workup. Headache is the number one complaint of patients, so keep a journal of your other symptoms. The other symptoms will probably be the key to figuring it all out. good luck.

[oliviamarie12345]

sorry, one more thing. I was watching Dr. Oz the other day. I love him!! He was talking about women going into ER with heartburn and they really have heartattacks, but the doctors are just sending them home with antacid pills. Anyway, my point is, he said on his show you have to be pushy.Dont be afraid to say, I want this test, I want to rule this out, and so on. This is totally true. Dont be afraid to stick up for yourself.

[BCT88M]

I have a wounderful regular Dr., it was the neurologist that I did not like.The er dr. at Gesinger in Wilkes-Berra was also great.  He gave me a shot of compasigne and dildoin and I started to walk better and the confusion was gettting better, he wanted to give me another sot but I had to drive. It wore off pretty quickly and driving became a nightmare.  I have also had an mri w/ contrast but it did not show anything.  The er Dr. said there is definately something wrong with me but it was not showing on rutine test.  I am deterating very rapidly, I am a little scared because I don't know what is happening to me. At times I need assistance walking, I fall alot and I also pass out without notice. I am confused all the time and at times I don't know where I am, nore do I regonize people that I see all the time.  I see double and at times I can only see shadows.  The headaches are constant.  I can no longer drive, I do but only in emerengcy and that is very scary.

[trinity007]

I would suggest that you see a Neuro-Ophthalmologist.  I had the same problem and my neurologist called it a "brain tumor" , while the neurosurgeon said it was Empty Sella Syndrome.  Again, the neurologist disagreed.  I made an appt with another neurologist, who order more MRIs, along with an MRV, lumbar puncture, and sent me to a Neuro-Opth for an eye exam.  All of these tests should have been ordered by the 1st neurologist especially The spinal fluid pressure was high and the neuro-ophth examined the back of my eyes more extensively than an regular ophthalmologist.

It turns out that I have pseudotumor cerebri A.K.A. Intracranial Hypertension.  This is very treatable. All of the symptoms mimic that of a brain tumor but are caused by a build up of cerebrospinal fluid which causes pressure.  I was diagnosed in Jan of this year and I have been headache and medication free since July.  Please look at this website to find a doctor near you  and more information about different headache causes.

NORTH AMERICAN NEURO-OPHTHALMOLOGY SOCIETY
http://www.nanosweb.org/login/login.asp

You will find useful info.  Be sure to go to "Patient Information"

Best Wishes to you
Trinity007

[Cath278]

Hi.Sorry you having such a rought time. I had the same when I first became ill. "Its all in your head, menopausal woman" I finally had to get realy mad and demand to see a woman neuro. 5 mins after we met she knew what was wrong, because she listened to me.I had all the tests done, and all came negitive but we were expecting this.Last one was a lumber puncture and that told the whole story. I have IIH/PTC and it was a long road to get to where I am today.Dont let them put you off or down. You know your own body and it is telling you something is wrong.Follow it thru.If I can help in any way, just drop me a line.Best wishes, Cath278.

[oliviamarie12345]

yes I remember in my quest to find out what was wrong I had a lumbar puncture to test for spinal fluid build up, that should definitely be in your workup. Syncope (fainting) is also another sign something is definitely wrong. So is seeing double. Neuro-Ophthalmologist is definitely a good idea, I saw one of those too! They do more specific tests. FYI Shots of toradol are really good for headaches too. Oh and one more thing, you should have your vitamin levels check, especially vitamin B12, if those are off they can cause fainting and seeing double. These can be checked by your gp or a rheumatologist. I still think endocrine workup is good too. Thyroid hormones, adrenal hormones, and pituitary hormones, also blood sugar (im sure that has been check though).

[oliviamarie12345]

Sorry, thoughts just keep coming to me! I once saw this other episode of mystery diagnosis titled the headache that wouldnt go away. She never had a history of headaches and all of a sudden she got a bad one all the time. It turned out to be something wrong with her heart after having an ultrasound of the heart. (not to worry you, just a suggestion)

[BCT88M]

Thankyou so much for the information you gave me.  I am going to take all the info I recevied from you and another woman that answered my add, I'm going to have him try to trouble shoot some of these things that arre happening to me and thansend me to the right dr.  I can't keep driving 2 hours each way to the hospital, I'll die in a car accedent.  Now I have some ideas to through at him and he can order some of the test through our lnearby hospitals.  At least we have some where to start.  There was something else I pulled off the computer today calledMedullary cystic kidney disease.  All this started after I had a bladdder and kidney infection in July and it went on until the middle of september.  All the headaches and confusion and passing out started in the middle of september.  Thank God it is treatable.  I have a long history of bladder infections and kidney infections.  I also have a long history of tumors.  I thought for sure it was a brain tumor, the systems fit, but I'n learning alot of other things can cause these same systems.  At least I am not the only one out there with these problems.  The neurologist I went to see thought I was drunk or on street drugs.  I feel like I'm on another planet most of the time.  

[BCT88M]

thank you for all your help today.  When I was about 18 a Dr. thought I had Addisons disease, I just moved away before all the tests were done.  I was on predisone for about 45 days right before all this started.  Isn't that one of the treatments for Addisions?

[oliviamarie12345]

Okay yes this is very important. Yes is it the tx. If the doctor did not reduce your dose and slowly take you off any steroids you can develop secondary adrenal insufficiency. Look up addisons on mayoclinic. It says the causes for secondary adrenal insufficiency, this is one of them. (addisons and adrenal insufficiency basically the same thing). You will need your cortisol levels checked and/or and ATCH stimulation test if the doc did not slowly take you off the steroids.