My Story

[katecamp]

I am praying that this will be the last time I must beg for help.

I had an “attack” on the left side of brain that was so painful. It pulsed and was erratic for nearly two weeks in 1990 and then it went away. It didn’t happen again until 1998. This time it lasted for about a week. The pain was so bad I had to stay in bed. I had a CT scan, they said there’s a “site” that looks weak and they did a MRI, the results were inconclusive. The pain went away so, I didn’t chase it down. I wish I had now but insurance ran out, job went away, depression set in and that was that. I pulled through and turned things around.

Flash forward to 2004, a small similar episode, when I had insurance, sent me straight to Neurologists (the best in Northern Virginia). I was desperate, I paid tons of money, and received no solid answers in fact, one doc sent me to the drunk tank thinking it was my alcohol abuse. Back then I drank, I do not any more, I can’t!! I don’t smoke, but if I do, I feel like my head will pop right off. I could tell the difference between a hangover and a migraine, apparently he didn’t. Then I saw another doc, and another. This last fellow has NEVER ordered any tests of any kind because he had no ideas of where to start. He is a licensed neurologist!! I have been taking massive amounts of hydrocodone and all that’s happening is I’m getting worse. I’m in good physical condition if not for the headache, I eat whole foods, take supplements and exercise regularly (I have horses), although that is beginning to suffer as I am afraid I'll lose my balance and fall off.

I now have solid insurance so I have just had a full blood work up testing vitamin/mineral/food allergens. We suspect a gluten intolerance, but although it affects some areas in my body, it doesn’t change the headache (always on the left side). I have been losing ground quickly, my husband has been a witness to “episodes” and just now, after watching a movie, I went to get up, had a major “HOT flash”, lost my balance and had to sit down. Yes, I am of the age, I am 50 yo. This has been happening a lot lately. Left alone in my head, I imagine the worst, some of the things many of you out there already have or know, I am dropping into deep, deep depression. I remembered this morning because I thought upon waking, no headache? Then I sat up and went, oh, there you are, damn. It gets worse as the day progresses. More and more this is what happens when I stand up quickly, move quickly, and I avoid having my head lower than my butt at all times.

I just found this site, are you my angels?

What to do?
Ever hopeful
Kate

[LIZARD]

Hey, Kate. :)

Anytime an MRI is said to be "inconclusive," it should be looked at by a neurosurgeon. Neurologists are not trained in matters of brain structure or abnormal growth and how they affect us. Even a slight difference in how the brain looks can impact how we feel in a big way.

Good luck!

LIZARD :)

[Kristina]

Hi Kate,

I too had unexplained headaches. They were daily for about 10 years or so, and would always go into a migraine headache. I was told it was the stress of my divorce and my children.

Then I started dating my current husband, a Physcian Assisstant, and he suggested a cause of my headaches. I was working with one ovary (the other one had a 9mil size cyst on it, destroyed the ovary and was taken out of me), and he thought my headaches were due to low hormone level. To make a long story short, I had a hysterectomy, had 2 'mild' headaches after the surgery and now been headache free since 1997.

My suggestion is to have your hormone levels checked. Good luck:)

[katecamp]

Hi Kristina

I had an ectopic pregnancy and they removed my right fallopian tube in 1988. After that, I had horrible monthly periods. They have almost disappeared (can’t wit for that to be over!! Men will never know about that pain every 28 days!!) I have been experiencing hot flashes for almost 2 years now; they started to go away but are now back with a vengeance. My moods are all over the place, I cry a lot and am angry, then happy, then sad, all inside of one hour. If I skip my pain meds, then, life stops. I can’t stand bright light, loud noise and can barely work. This causes more anxiety as I am the CEO of technical company and stuff is starting to slip. I wake up tired but can’t sleep, I’m losing weight and but not trying to, the roof of my mouth hurts and looks like I’ve burnt it on pizza, which I can’t eat for fear of gluten intolerance, which my Mom has, and my eyes hurt and are dry. I was so freaked out two weeks ago, I had my new doc check for Leukemia, which I don’t have, thank God. I started to see a physiologist because I became worried I might do harm to myself. The daily intense pain is making me lose my mind.

I am taking a replacement Adrenal gland therapy because of my excessive early years, they think, in addition to everything else; I have probably shot my adrenal glands to hell.

I’m a mess.

[Kristina]

I also for forgot, stupid me, that I have thyriod cancer and surgery scheduled for 1/17. Your thyriod levels may be off also! I will say my thyriod levels were in the 'ok range' but after all the reading i've done, talking with my PA-C husband and my doctor, thyriod is showing up in leaps and bounds! I've also heard that the 'ok range' needs to be lowered to a more appropriate level, correct me if I'm wrong. I bet you are wondering how I found that bugger of cancer? By accident.....:eek: I was having some shoulder and neck pain and my husband's clinic ordered an xray. One of the doc's there said what do you have in your throat? So we called it the 'chicken bone'. And after a few tests, that chicken bone is cancer. TaDa!

Now back to you, (sorry:rolleyes: ) I would have my thyriod and hormones levels check. NOW, I'm done......take care and let me know how things progress.:o

[katecamp]

Well, that's very interesting. I have had my thyroid checked and it was OK too. I have a pain in my neck (back side in the spine) and then straight through to the front.
It feels like a funky lump on the back and thick and painful on the front.
An Xray showed this?
Yikes.

This is good info, thanks for sharing
~K

[annelb]

Hi ~K, You mention needing to eat gluten free. There is a Gluten Sensitivity/Celiac Disease forum here on Braintalk. Living gluten free is not always easy, but it is doable. I have been GF for the past 4 years and the people here on BT have made it so much easier.

http://brain.hastypastry.net/forums/forumdisplay.php?f=152
Anne

[Buttons2]

Katecamp, I just replied on your post under another forum. You said you had $1,500 worth of blood tests taken right? This should have included the entire thyroid panel,not just the TSH test.

It's imperative you get those test results,maybe we can help you figure them out.

I'm sorry you are suffering so much! Can you switch doctor's? Have you seen an internist yet? Any sinus problems?

[katecamp]

Hi Buttons

I've just returned home from the new Dr. My food allergens test came back negative and we are waiting for the vit/mineral results. I am still going to do the spit test, but it’s a little confusing, do I eat gluten then take the test for best results and all these tubes, yikes!
I had my thyroid checked two years ago and it was fine, lyme disease check, nothing.
Interesting you asked about sinus because a new pain just arrived on the right side of my nose close to the bridge and my teeth hurt like crazy, and that got him thinking, so, we did a few things.
He
1. injected my left trigger point on my neck as there is a painful lump there
2. changed my pain med from Lorcet to percocet so we can reduce how much acetaminophen I’m getting
3 wrote orders for new CT scan of neck area, MRI with contrast (never had this before) and another CT for my sinuses. He said you can have an infection for years that can cause a lot of the symptoms I'm experiencing but you don't have to have a drippy nose to think that's the problem.
4 he is sending me to a Holistic hormone expert in the area to see what we can do to help the crazy things going on in that area
5 going to see a new chiropractor that deals more with twisted connective tissue rather than whacking your spine
6 recommended a good acupuncturist
7 and last, but not least, prepared me for the inevitable detox program I will have to go through to get off codeine, thanks to the other doctors who never looked any deeper than their prescription pad.

So all in all, I think I am in good hands with this fellow. Combined with him and the psychiatrist, I am not suicidal as I was before and we will know after the scans what it is or, at least what it is not
Ever hopeful
Katie

[atypicaljane]

hi Kate,

Welcome to braintalk , we are happy to have you here, I hope that your story
turns out as succesful as this latest doctor you have posted about.
I am sorry I am not familiar with your symptoms, but am always here to listen, as I do suffer from pain and know the emotional turmoil it takes on our bodies.

peace and love
Jayne :-)

[Buttons2]

OK, since you brought up Lyme disease-please get a copy of that test! I'm betting it was as worthless as mine was (which took me 6 weeks to finally get a copy I couldn't even read!)

Glad you like the new doc,and he's willing to actually seek some answers & relief for you. Please keep us informed. Good luck,Buttons

[katecamp]

OK, since you brought up Lyme disease-please get a copy of that test! I'm betting it was as worthless as mine was (which took me 6 weeks to finally get a copy I couldn't even read!)

Glad you like the new doc,and he's willing to actually seek some answers & relief for you. Please keep us informed. Good luck,Buttons

HI Buttons

Good suggestion. I am moving all my records to this new fellow and my hopes are that he can make sense of it all. As for Lyme's, it killed my 5 yo dog (heart breaking) and we have proven it is here on our large farm as our puppy tested positive at 6 months old. I have had many ticks on me, but no circular bull’s-eye that is typically associated with it.
I saw something about Lyme's on an Oprah show and the man's story was overwhelming. If it weren't for a doctor who wouldn't give up on why this normal person ended up violent and in jail, no one would have figured it out and it would have killed him. After aggressive treatment he was fine and out of jail. Amazing story.
In addition to everything else, my teeth (upper and lower) hurt, I have looked and looked and can't find any info on what the reason could be other than the big C.
I am bound and determined to figure this out and will keep posting as I learn more.

This site has been really, really helpful, thank you, thank you, thank you!!!
~Kate

[Nana4&cntn]

Hi, Kate,

I am adding you to my prayer list. I am only familiar with the hot flash thing. Mine started with a hystorectomy at 25, I recently went off the hormones due to other health concerns. I do understand pain and depression, I have great doc's who keep me inline. The depression can get so bad when dealing with health and pain issues. Im am here to listen anytime.

kathy