Having headaches again!

T.K.C.

T.K.C.

Joined
May 7, 2005
Messages
20,928
I have been on a medicine called Diamox, which took away my headaches BUT, we knew that it has a limited efficacy. I stated having headaches again, about 2 weeks ago.This headcahe totally screws up my vision too. (Among other things.) My spouse has been talking to some docs. at work, and we are going to have to tests done: 1. an MRA. It is like an MRI, but with angiography. 2. a CSF (Cerebral Spinal Fluid) Flow Study. I called my headache doctor and told him that I wanted these tests done ASAP. My headache doctor is nice, BUT, he is an internal medicine doctor, and decided to slecialize in headaches. And the thing that really is starting to frsutrate me, is the simple fact that the man CAN NOT make a decision!! I fortunately HAVE some medical knowledge, and with him, you basically have to tell him what you want/need. It should NOT be this way!! So, my spouse has been talking with some neuro surgeons at work, explaining all that is and has been going on with me. They are thinking that I have something called Pseudo Tumor Cerebri. And this isn't the first time that this had been brought up. Anyway......I am really feeling like crap again. The night before last, I was up ALL night, becuase I was in so much pain, and the pain make me vomit. I got 3 hours of nap at about 3 pm. I finally got to sleep at 10:30pm last night. So, this is what has been going on with me. The other thing, prior to starting to feel like crap through a goose, I started job hunting. I have an interview on Monday. And another company called me yesterday to talk to me. OY. I keep praying and meditating. I have a lot of faith and trust in God!! So, I just thought I would upadate you all. Sorry it is so long!! Thanks for listening!!
 
I'm very sorry that you are having headache problems. I have a nephew who has migraine headaches so bad that he can't work and has seriously thought about suicide many times to end the pain.

It really seems like it IS time to get a GOOD doctor who is up on the latest medicine and advances.

The BEST of luck to you.:thumbup:.
 
Getting a good doctor has been a challenge!! My primary care refers me to a Neurologist, who is so busy with tooooooo many patients, that I have to repeat things 4 times to her. You can see the last 30 patients of hers go by in her eyes!! She decides she can't help me. OK. She refers me to a headache clinic. I call to make an appointment, only to find out that the doctor that I was supposed to see was OUT OF THE COUNTRY!! And wouldn't be back for months!! This was unacceptable!! I already had this headache for a couple of months!! So, I call the Neurologist back and tell them all that, and they refer me to the Faulkner Headache Clinic. This is where I acquired the doctor that I talked about in the above post. Oh, I failed to mention that he is the Director of the Faulkner Headache Clinic!! So, now, we are going to get a name of a Neurologist from one of the Neurosurgeons at my spouses work!! I have been praying that the right doctor be brought into my life!! I had this dang headache for 6 months, when the spinal tap relived it the first time, then I was put on the current meds. Now, we just need to get these test done, and get a decent doctor!! THANK YOU Dann!! My heart goes out to your nephew!! I KNOW all about pain. I would be lying if I said I hadn't thought about that myself!! But, I keep praying and meditating, and just sucking it up putting one foot in front of the other!
 
I saw a documentary about a gent that had headaches like you describe. He set up a camera in his home to show the docs he wasn't bsing them. It got so bad he would put his head on the floor and push down to try and relieve the pain by putting pressure on his head.
It turned out there is a major nerve that runs thru the jaw and his was being pinched and that is what was causing the head aches. He finally found a doc that was familliar with this ailment and had an operation that cleared the pressure from around the nerve and healed him completely. Maybe you need to ask about this?
 
We basically know what IS causing the headaches. I have a build up of CSF and it is under too much pressure, They are pretty sure that I have Pseudo Tumor Cerebri. But thank you for your thoughts, as it iS very much appreciated.
 
I am sorry to hear about your pain but I can simpathize with you. I have had a chronic headache, 24/7, for the past 12 years. Somedays it's worse than others but it never goes away. When I first got them I was to see every specialist that my parents could get me to but no luck. Many tests, including an MRI, spinal tap, EEG, cat scans, and others were done but they never found anything.

I don't want to detract from your post but I wanted to let you know that there are some of us out here that know some of what you are going through.

Good luck
 
I feel terrible about you guys suffering through this. My migraines were terrible but transient. It is inconceivable to me how anyone can live with this constant pain. I can only hope that one more breakthrough will lead to an end to it.

TKC, if you need me to come up there and smack some doctor around ... let me know !!!
 
Boobar: My heart goes out to you!! Thank you for your post!! Yes, you DO know what I am going through!! Prayers out to YOU!! I am truely sorry that they haven't gottent to the bottom of your headaches. That has to be frustrating, to say the least. Thank you for your empathy.Thank you Esav Benyamin!! I may take you up on your offer to smack around a doc. J/K. I believe God WILL put the right doctor in my life soon. Thank you all!!!
 
Sorry to hear the headaches are back. Prayers sent that you find the right treatment and doctor. Hope you feel better, all.
 
I was diagnosed with a pseudo-tumor in 1978. After 6 months of agony, 11 spinal taps, and every test known to man (at that time), it finally went away. I was treated with valium and lithium (of all things). The lithium seemed to work; I was on it for two years, and the headaches never came back. Ask your Dr about this. Also, you need a neurologist, as you well know. Maybe the busy one can refer you. You have my sympathy and empathy. I know what you are going through. Bill
 
Bill: Hi! Thank you!! WOW. That is something. The Diamox works well, and that IS the standard medication for this, but it has a limited efficacy. Yes, I am working on trying to get a neurologists' name from one of the Neurosurgeons at my spouses' work. And then I am going to ask my headache doctor to refer me to him. That is good that your headaches never came back!! Thank you very much for your sympathy & empathy.
 
KC, let me offer my sincere prayer that you get better soon. I know a little about chronic pain and all I can say is DON'T GIVE UP. You have a lot of us pulling for you to get better.
 
I guess this would be a good time to tell you that I have had Pseudo Tumor Cerebri since 2001. It has mostly recessed now, but I still have a constant headache. My thoughts an prayers go out to you. And if you ever have a question or want to talk feel free to e-mail me.
 
I wouldn't concern yourself with a neurologist, but get a neurosurgeon of EXCELLENT repute. I'd be willing to bet you have a bulged disk pushing on the right nerves that's causing 90% of the problem, or a spur poking into a nerve triggering the headaches.
In the meantime go see an Osteopathic MD(DO) that uses manipulation. You'll have to call around to find one, as most have become pcp's or GP's as that's where the money is and the skill is not.

Often they will manipulate the neck and back and the headaches will disappear almost immediately. Chiropractors have never helped me at all. The problem was back within 24 hours. It was surgery on my neck that finally stopped the bulk of the migraines and I see a DO once every few months. I still have severe spinal problems(read pain) caused by a mickey mouse neurosurgeon 30 years ago, but most won't touch what some other quack screwed up.

Good luck to you.

PS: It won't hurt to have the MRA either. A neurosurgeon will order it, or an MRI anyway, so you might as well already have it in hand.
If you can, see if they will do it while you stand or sit. That's where the spine shows the problems, not when they lay you down and make sure you're all straight and even put pillows under your knees to help straighten your spine. That's like having a test to prove nothing is wrong, for Gods sake. Maybe in another 100 years the croakers will catch on to that.

Have they called you a drug seeker yet? That's what usually happens around here when people go to the hospital or doctor for headache or back pain treatment.
Hanging is too good for quacks that do that to suffering people. Druggies will get their poison of choice regardless.
 
THANK YOU though!!No, I don't have any bulging discs in my neck. When we did the first MRI, they did my neck too. My last MRI was March 26, 06. No, actually they haven't called me a drug seeker.
 
Headaches can be very hard to live with. Finding the right Dr's now days is a real pain.

Wife's headaches are back after being gone for years. They did a TMJ thng that she had to wear in her mouth for months and months, and it finally seemed to correct her jaw alignment and her headaches stopped. But they are back now so we are starting over looking for new Dr's also.

Hope yours gets better soon. My wife's also... This is no fun.
 
I am sorry to hear about your wife!! I hope you gguys get her headaches under control!! prayers out to your Mrs.
 
I feel for you people with chronic head pain. A headache is such a, well, headache. TKC, I'll get that CRK out to you in the next few days. Hopefully that will make you feel at least a little better. :)
 
TKC-
if you have not found a Neurologist in the Boston area, you should PM me your phone number.
 
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