Don't know what else to do

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New Member

Date Joined Nov 2011
Total Posts : 1
   Posted 11/23/2011 11:06 PM (GMT -6)   
Hey everyone I am just hoping I can get some recommendations or tips or anything that I can do to help with my headaches. I am pretty much at my wits end and just want one day without pain, or maybe even a half a day would be nice. I have always had bad headaches since I was a teenager but have been able to tolerate them or ease them with a few OTC pain meds, but last year I started getting horrible painful headaches. They started around February and due to not having very good health insurance at the time I tolerated them. They got so bad to where I would get nauseated sometimes and I remember one week it got so bad I spent the week in bed due to them. I eventually changed jobs and got better health insurance and immediately made and appointment with my family doctor. When I went in to see him he diagnosed me with high blood pressure and cholesterol and about a month into taking the meds he prescribed the headaches went away. This was around September of last year.
Then starting in May of this year the headaches came back. It was right after I had tonsillitis so while I was in to see a different doctor they actually changed my BP medication because she said it was still a little too high. To make a long story short, I quit seeing that doctor and went back to my original doctor. He now has me on Lotrel for my BP and Zocor for my cholesterol. In addition to that I have been taking Topamax 50 mg twice a day since June. I have also tried for pain Fiorcet, Maxalt, Sprix, Lorcet, and currently taking a little higher dose of hydrocodone with Lorcet Plus. I also get shots of Toradol and Phenergan when I can and probably one out of every three times they work. The two doctors that I have talked to have tried everything as far as stress, allergies, tension headaches, migraines, etc. as far as causes. I have quite all alcohol and caffeine. I eat right tending to go more for fruits and veggies than processed and fast foods. I try to walk every day and get my exercise in but with the pain it's very very hard to keep it up.
I was recently diagnosed with Obstructive Sleep Apnea because of the headaches, but normally patients with this condition present with morning headaches. My headaches start when I get up in the morning and they get worse as the day goes by and last until I go to bed at night. They are unbearable and very painful all over my whole head from the top of my eyes to the back of my neck with a very intense pressure. I have been on a CPAP machine for three weeks now with no relief so my doctor has referred me to a neurologist. I have already had a CT scan done a few months ago and it was fine with no abnormalities. I even had a couple doctors take a look at it for me for second opinions. I did learn I have a deviated septum but it is very slight so I was told it is not that much of a problem.
I do apologize that this is so long. I just want some relief. I come home at night from work and put ice packs on my head and dread the next day to start over again because it's just going to be another pain filled day. It's not just a little annoying headache that I can tolerate, it's affecting my job and everything else in my life. The hydrocodone I am taking is not even dulling the pain and I really hate taking them. I'm really scared of getting addicted to them. So any help would be greatly appreciated.

New Member

Date Joined Nov 2011
Total Posts : 1
   Posted 11/26/2011 3:36 AM (GMT -6)   
Hi all! I have had migraines for 12 years! I have had everyday migraines for 2 years straight. Right now i am takinf Topamax 100 mg 2x a day, Lamitical 100mg 2x a day, Prozac 20 mg a day. None of this is helping me. i live in Lynchburg Va. The Neuroligist here will not see me anymore, he referred me to UVA. I see Dr Login. I have a notebook that has two full pages front and back full of medications that I have tried. I am allergic to all of the triptants, NASIDS, Aleave, Naproxen and i have tried steriods several times. I have has MRI's CT scans, Lumbar punctures, blood patches, Lidocaine injections, botox injections and everything that you can imagine and nothing has helped. I have been on every kind of pain meds. The only thing that will help just put a dent in my migraine is Morphine and reglan injections. But the emergency room has point blank told me that I can't come back to them any more. They think that I am there just to get a fix. Noboby understands the pain unless they have had a migraine before. For the past 8 months I have begun to lose my vision completly. I lost my job because of having to miss so much time from work due to this problem. I am currently awaiting my decision on disability. Out of an entire month I am in the bed out of 30 days 28 days. I am tired of living my life like this. My current Neuroligist wants me to go to a headache clinic in either Chicago or Pennsylvania. I am stuck between a rock and a hard place. I know all of my triggers. I have lost 40lbs, because I stay nauses and Vomitting all day long. i can't keep nothing down on my stomach. confused I have to children that need me in their life and a husband. My son graduates this year and will be going off to college. I am sick and tired of living like this. I have heard of this surgery that they can do to cut your nerve endings or something like that. But I am afraid of that. You can google migraine surgery and look at it. I feel for anybody that has them, I know exactly how you feel. And them being labled a drug addict is just totally wrong! If I hear of anything new I will post about it and  I hope that you will do thw same. God bless you all!!!!!!!! cry

New Member

Date Joined Dec 2011
Total Posts : 3
   Posted 12/8/2011 2:10 PM (GMT -6)   
oh my God!Are you really ready to cut ur head???stop even thinking about it!you were right, writing that ur kids need u.
have г ever tried listening to special audios for healing the headache?

New Member

Date Joined Jan 2012
Total Posts : 5
   Posted 1/5/2012 8:12 PM (GMT -6)   
I am new to the site and really wanted to see that there are people out there suffering like I have been doing for almost 20 years now. I am a surgery patient and I am getting ready to go back for complete removal of the occipital peripheral nerves on Feb 10. I had my first surgery in Feb of last year (he removed two lesser nerves, one on each side and the other four larger ones, he removes muscle from around the nerve so that it wont constrict) and I was in HEAVEN for about 3 solid months with NO migraine. I couldn't believe it - even during the rain, which, by the way, is my archenemy!!!!!! For about the first 10 years of suffering I was a frequent flyer at the ER (approx 4 to 6 visits a month) and have gone thru the whole sha-bang of explaining "I'm not a drug seeker, but Toradol does nothing for me". Those were the days of wishing I could be placed into a medication coma! LOL. It is so frustrating when they just cannot understand how horrible that pain is. It took a very long time to find meds that helped. I thank God for Imitrex! When that came out - ER visits dropped to about 1-3 times a year. However, I do want to share with you that an alternative to the narcotics, when I could not relieve it myself, was what my favorite ER doc called my migraine cocktail. I am not 100% sure on the milligrams of each, but I believe it was 20 mg of Compazine (nausea), 1mg of Ativan (sleep), and the main drug was DHE which is dihydroergotamine (vasoconstrictor). I didn't feel doped up or anything. I would arrive in hysterics crying in pain and after he would give me that thru an IV, I could get up and walk out after about 20 minutes. So if you can tell your dr about that, you should try it.
Now, back to my surgery....I'm going to let him go in and take those four nerves he freed of muscle, completely out. I will have some numbness in the back of my head, but I can live with that. The peripheral nerves do nothing but provide sensation to your head, they do not control any type of movement. Depending on where your headaches are located, he can do the occipital, temporal, or frontal nerves. Here is my doctor's website so you can read up on it:
One big question: does he shave your hair? No, not even a little. I have very thick, below-my-shoulder length hair and not a strand gone when I woke up. It was a matted mess when I left the hospital, but you can wash it after 3 days. Dr. Ducic is at Georgetown University Hospital and he is an awesome doc.
I see that one of you is in VA, so you could see him easily. I live in Maryland and work in DC, but happened to catch a story about him on the news - I called the next day and saw him within a week or so. If you have any questions I can answer, just let me know. And I will be sure to keep you posted on this second surgery. Good luck.

New Member

Date Joined Jan 2012
Total Posts : 17
   Posted 1/15/2012 6:40 PM (GMT -6)   
I have had migraines since I was a small child. They run in my family. Sometimes I have unrelenting migraines for well over a month, sometimes I have no migraines for several weeks. Some migraines are bad enough that I lose vision completely. All migraines are like living the story by Poe, Fall of the House of Usher. I take cafergot which is a tablet form of DHE (it is a mixture of ergotamine and caffeine). A neurologist I recently saw suggested adding the following supplements: Co-enzyme Q-10, B2, and magnesium. She said that this combination results in reduction of migraine incidence in 30% of people who have chronic migraines. It seems to have helped a little, but not as much as I had hoped. What has helped more than anything else was removing all wheat products, all refined carbohydrates, and all regular sugar from my diet. I still have migraines on a regular basis, but at least the worst of them have been reduced to one every 7 or so weeks. That is amazing improvement from where I was and quite a blessing!

I, too, live in Virginia. about 1 1/2 hours from lynchburg.
Thriving Around Chronic Illnesses! The purpose of life is not to simply breathe... The purpose is to thrive, enjoy, and rejoice!

Diagnosed with Fibromyalgia, EBV, Chronic Fatigue Syndrome, Osteoarthritis, Seasonal Affective Disorder, OCD, Major Depression, Chronic Migraines, Multiple Allergies & Asthma, Chronic Pain (nerve damage from a car accident), and Whiplash

Regular Member

Date Joined Feb 2005
Total Posts : 310
   Posted 1/15/2012 9:24 PM (GMT -6)   
Hi Jenni! I don't live to far from you...Kingsport Tn I have been to UVA for migraine treatment. I went there back in Sept of 2011 for DHE iv treatment, but it only helped for about a week, and than I was right back to where I started. I saw a group of neurologist from UVA Dr. Mark Quigg, Dr. Fountain, and Dr. Mark Shaffery who did my epilepsy brain surgery. I deal with chronic daily migraines also and there hasn't been anything yet that has helped me. I've tried DHE protocol, botox injections, nerve blocks, imitrex, maxalt, relpax, frova, zomig, zanaflex, klonopin, toradol, phenegran, topamax, lamictal, steroids, and my list goes on... I wish I lived closer to a headache clinic. I take it one day at a time and if not for God's grace and strength I'd never get through each day. I wish you the very best. You can contact me if you have any questions about UVA I've been up there several times for test.

God Bless,


New Member

Date Joined Jan 2012
Total Posts : 15
   Posted 1/17/2012 7:28 PM (GMT -6)   
Mercyme try to avoid soybean oil which is in everything. Arnold's neuralgia may play a role. For myself it is as if blood blocks at nape. Are veins in hands smaller with head neck pain? Consider a vasodialator (zomig is best for me)

New Member

Date Joined Feb 2012
Total Posts : 1
   Posted 2/11/2012 10:51 PM (GMT -6)   
Hello everyone,

I just wanted to say hello and thank you for your posts. It seems many of you are in my area (live & work in MD) so i appreciate local-ish suggestions of doctors. I've had treatment at GW for several years. My headaches are changing and I'm not sure what to do--migraines had been controlled well by Imitrex but now am getting stabby pain behind my eye type headaches which Imitrex does not touch. My ENT thought it might be sinus related and I've been on three rounds of antibiotics since December but a sinus MRI was clear and doc says I have only a slight deviation. Oddly enough the migraines seemed better after a few days on the antibiotics and I was pretty much pain free until about 7-10 days after finishing the prescriptions. Perhaps it was just coincidental and it's just the cycle of this. Speaking of cycles, I'm 42 (female) and I'm wondering if hormones are changing the game.

Anyway, I am a brand new member and I am both frightened by how much everyone is suffering and somewhat comforted by it as well. I worry that it will never go away and find keeping the mood up is a challenge.

Have tried various things over the years...low-dose amitryptalene (didn't think it was doing anything, but maybe it was!), tompomax was a nightmare, get occassional lidocaine injections in my neck and shoulders, but again, the stabby pain is brand new. Blah.
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