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Chronic headaches

It has been over 12  years that I have been suffering with severe chronic headaches that I 'deal' with 24/7 because nothing has worked and I do not take anything for it. I have had MRI's, blood tests and everything else in between and they've all come back normal. Doctors cannot explain my pain or how I am able to function with it daily. All they've said is that my headaches are: "more severe and frequent than migranes". I cannot ever lay down on my left side because the pain is guaranteed to worsen. I have tried and changed all my habits and caffeine is the only thing that helps. Hoping for a miracle....
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Avatar universal
Hello.

Rowena thank you for the suggestions. I have actually tried accupuncture and frankly I was in horrible pain afterwards. I only went that one time and never again. I have heard of self hypnosis though never really looked into it. Biofeedback I'm not familiar with but I will read about it.

Thank you!
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Avatar universal
MEDICAL PROFESSIONAL
Hi,
How are you?I'm sorry to hear what you have been through for the past 12 years. If medications are not helpful, you can also try complementary and alternative medicine such as biofeedback and self-hypnosis, which have been effective for some headache sufferers. Take care and do keep us posted.
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Avatar universal
Thank you for taking the time to respond to my post.

I frankly do not remember the names of the many diferent medications they've had me on throughout the years. I've realized that I should've kept track of them, but a little late now unless I request my records, which come to think of it, I will.
I've been on anti-depressants, seizure medication - one of which (as usual you start gradually) the day before I was about to double the dose, I had a pseudo seizure. Let’s just say that it freaked me out completely. The doc at the ER told me that I was lucky I hadn’t doubled the dose and that I should stop immediately. I think it was called Topamax or something that sounds just like it. Also have been on some kind of steroid; caffeinated medication…. One time they did 2 shots at the back of my head at the occipital nerves. It was supposed to relieve the pain and I was in much worse pain after. I’ve tried acupuncture and I was in tears for hours afterwards as a result of it. I know everyone swears by it but not for me.
Yes I did mean neurologists, mainly from Columbia Presb in New York City. It did start with one then it progressed as he kept bringing different doctors in and that’s why I saw their entire team there.
I have not been to a doctor for my ‘headaches’ in years. After the occipital experiment failed miserably and they did not seem to have any more answers I kind of gave up.
Something did help which has left me wondering. Not sure if you’ve heard of the Master Cleanser diet a.k.a. torture? Well I did it about 2 years ago. The first 4 days I was in so much pain that I could not function at all. All I kept doing was lay on the floor with my head between my legs, crying and rocking back and forth. Absolutely horrible pain and I deal with this damn thing daily so my tolerance is pretty high. After those days I was literally pain free! Nothing whatsoever for at least 1 month. I had forgotten what it was like not to be in pain. It returned after that but slowly and it has progressed to this numbing sensation again. I have tried to do that torturous diet again but have failed at the first couple of days of pain. So now I basically just tough it out…

Ps. I will try magnesium and B-2. Thanks!
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1088430 tn?1259159773
I do have some advice. Sounds very much like my history, except mine is 6yrs (only 4 being really bad). Forgive me if my advice does not help (you've already tried/know). There's alot not said in your post about your RX preventitive measures...

1) you said "doctors" I'm assuming you mean neurologists since the long term? If not, PLEASE see one; mainly one who specializes in headaches. I broke down earlier this year and went back to the one I was ref. 4yrs ago and realize I should have been w/ him all along.
2) What have the docs put you on preventitive wise? I've of course had RX's for the acute migraine attacks (Relpax & Imitrex). However, I've been on some preventitives that have helped alot:
Day Time
1) Lyrica- since it's for "nerve pain" which is what my neur. has said is the culprit behind chronic ongoing headaches like that he gave it to me v/s Topamax b/c he said that one only addresses migraines. I started on low doses & worked up to the high ones that people take for seizers. it actually helped a whole lot. Stopped it b/c of weight gain and feeling "drugged" alot (which when it relives the 24/7 pain at first you don't care if you feel "drugged".
2) After Lyrica he put me on Neurontin which is another "nerve pain" RX. Started low dose (helped but not alot) & was raised to a high one the last visit when I showed him the massive diva sunglasses I still wore driving at night b/c the light sensitivity was still so bad and told him I wanted to shoot every headlight I saw. And also like you, had ben months & months when I could barely put my head on the pillow w/o it being terribly painful. Spent many nights trying to sleep sitting up. And yes, the left side hurts ALOT worse than the right. Only sleep on the right now.
Night Time
1) Was put on Amitrypiline (anti-depressant) @ bed time since he said those types of meds help w/ nerve pain. Didn't do squat. After the 3rd visit of him just raising the mg dose he finally agreed it was doing nothing (ha)
1) After Amitrypiline he switched me to Cymbalta @ night for nerve pain. Have only been on it for 2wks & I promise it's begg to work alot better than I thought it would! First wk 30mg, then started 60mg nightly. last night was the very first night I layed on the pillow and didn't feel pain, only lighter discomfort. I even think that will continue to improve.
-STOP thinking that caffiene helps. Yes, it helps in the short run sometimes, but it's NOT recc. for people like us who are "chronic" It aggravates your nerves up there. Don't stop cold turkey, but no more than one serving a day.
-START (if not already) taking 400-500mg's of magnesium every day along with 200-300mg's of B-2 everyday. Magnesium is clinically proven to help chronic headaches, B-2 is widely believed to help the nervous system.
-If @ all possible, try not to take more than one Imitrex or alike a week b/c even though wonderful for acute, it too can aggravate "chronic" conditions. Also, completely avoid any over the counter pain meds is possible. They are the worst chronic culprit, especially the "migraine" combos of asprin, tylenol, & caffeine. it would even be better to take a dopey RX pain pill than those.
Thought long winded, hope some of this has helped. Your post reminded me so much of what I've been through I wanted to share (:
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