Thursday, May 10, 2012

My Headache Journey Part 1

Since way back when I was in high school I have suffered from headaches. That's almost 20 years of headaches! Not migraines, but just plain ol' headaches. They are always in a very specific spot. Right in the back of my head behind my ear, usually on the left side, right where her thumbs are in the picture below.
As a teenager, I remember laying in my water bed and I would put my head at an angle so it would rest just right on the shelf of the headboard.  Laying this way would put pressure on the spot where there was pain. When I would put direct pressure on that spot, I could make the pain miraculously go away. But as soon as I let up on it, bingo, it would come right back. 

I had these headaches all through high school and college. When my husband and I moved up to the Twin Cities we decided to make an appointment with a neurologist to see if I had a tumor or something more serious going on. At that point they seemed to have gotten worse and it was getting harder for me to function.

I got a CT-scan and the doctor said he didn't see anything...well, I mean he saw my brain and all but no tumors, please people!  He said they were definitely not migraines, but probably tension headaches. His treatment? He put me on a pill called Desipramine. Now, from what I understand, it is an old antidepressant that used in small doses can help to reduce headaches. {Remember, I'm not a doctor or in the medical profession and this was a long time ago, but this is what I remember them telling me and it seemed to help.} I wasn't headache/pain free but they weren't as bad as they had been. Plus, a great side effect of this decreases your appetite! Can I get a whoop, whoop for that?!

I was on Desipramine until we decided we wanted to have kids. My OBGYN said that he did not want me on Desipramine while trying to get pregnant, it could cause birth defects or harm babies. {Again, I didn't research this, but took his word for it and I would obviously rather have headaches than take any risk no matter how small.} So I went off it again and the headaches came back in full force...probably 4 to 6 a week. During this time off my medication I went to chiropractors and had massages, and nothing seemed to help. {They would always, however, comment on how tight my shoulders were and could understand why I was in pain.}

While I was pregnant with my daughter I was working at a medical facility {in the HR department}. After talking with some of my 'in-the-medical-field' co-workers, I decided to see a specialist for my headaches. The doctor was an MD that worked in the Rehab and Pain Clinic Department. She put me back on Desipramine and started me in physical therapy 3 times per week. I spent thousands of dollars going through physical therapy and it honestly just wasn't working. Sometimes my headaches would get so bad I would have to go home. Sometimes they would jump from the left side of my head to the right side {never on both sides at the same time}.  Sometimes they would creep up over my ear and behind my eye. And one of the worst parts about it was there wasn't a medication out there that I could take to make the pain go away! I tried Tylenol, Ibuprofen, Excedrin - prescription strength of all of these. The doctor even gave me prescription medications as well and none of them helped.

At one point when I was having an extremely bad headache, I went down to the clinic and she injected me with a shot of something, right in my head, right there in the clinic. I'm not exactly sure what it was, but at that point I honestly didn't give a $@&#, I just wanted the pain to go away. I then went out to my car in the parking lot and slept for about 2 hours because after that, I just couldn't drive and my commute was about 20 minutes. {not sure how safe that whole procedure was} Did the pain go away? Sure, for a few days, but then it came right back.

After that I decided that PT just wasn't working, a doctor that gives me a shot in the head without images to know where she is shooting the drug freaked me out so the next thing I tried was acupuncture.
This worked great! It was a little weird and scary {my doctor doing it was my kids' pediatrician and you get down to your skivvies under a hospital gown...that's just not right}. Plus, stabbing those little needles in my body always completely and utterly freaked me out! But it helped with the pain and I found I wasn't taking 4 Ibuprofen every 8 hours...that's a good thing! I then went every two weeks to every month to every other month. It helped, but it didn't "cure" me and I was still on the Desipramine daily. 

After I left the medical center for a new job I found it harder and harder to go get an acupuncture treatment and my headaches came back again. One day when I was having an extremely bad headache and I took Imitrex {my acupuncturist had prescribed} and that didn't work it just completely knocked me out, my hubby said enough. He scheduled me an appointment at the Institute for Lower Back and Neck Care in the Twin Cities. {side note: my husband has had two, yes two back surgeries before the age of 30...his second surgery was at ILBNC and was very successful...we have a lot of faith and trust in these people, not sure why we didn't go there sooner}

I was extremely nervous for my appointment. It kind of felt like, great here we go again. I'm tired of going to the doctor about my headaches, I figured I've lived with them for so long, I'm sure I'll just live with them forever. There's no way they will ever end! Most of the time they don't incapacitate me, they are just there!
Dr. Spight {can I say I just love him} is my new doctor and was involved in my husband's surgery. He listened to me, asked questions, gave me an exam to see where I hurt. Now, I have always known that my muscles were tight in my neck and upper shoulders, I used a special pillow for God's sake, but I didn't know what caused this. It didn't matter how much stress I was in, if I was at work, if I was sitting at a computer, if I was working outside, eating supper, I would get pain. Every week. Looking back, I probably had more headaches then I originally thought, because I had pain almost constantly. It just depended if I 'labeled' it a headache or just ignored it.

Dr. Spight wanted me to get an MRI of my neck and head before he made any decisions, but pretty much he was thinking that I had Occipital Neuralgia. Basically, my Occipital nerve was always excited {yes, I heard many comments about that little diagnosis}. But because it was always excited it was telling everything around it that it was in pain. Hence my headaches and pain in my neck and shoulders. 

Could this possibly be an answer? Dr. Spight seemed to act like he had heard of this before, that other people have suffered the same way I am suffering. 

Does that mean he can actually, truly, really, positively, absolutely help me? journey to being pain free!


Tanya said...

I'm very intrigued by this story! I have actually had headaches in the back of my head for about a year now but haven't figured out what they are from. I also have a lower back injury that I never even thought of connecting to my tight shoulders or headaches. I can't imagine having the headaches for my whole life though! I hope that you have figured them out and are pain free!

I'm excited to hear if this doctor helped you and what the diagnosis was!

Greta said...

UGH -- so sorry you have had to go through this. Headaches of that proportion have to be miserable. Hopefully the doc figured something out -- I'll stay tuned! :)