My Story

youwoo

New Member

Joined : Aug 2007

Posts : 4

Posted 8/7/2007 8:37 AM (GMT -7)

Hello all!

I'm new to this forum and I wanted to tell you all my story.

I started having right sided headaches that would spread to the base of my neck and into my face about a year ago. These headaches were a daily occurance with varying degrees of pain. I saw my physician and he thought that they were stress related..etc, etc and he thought it would be good to see a physical therapist.

I didn't think that I needed to see anyone for them until one day I woke up and the right side of my face had gone completely numb...I cannot tell you how scary that was. Other symptoms were nausea, dizziness, tingling in my right hand, what felt like intracranial pressure changes and a crazy bad headache. It definitely drove me to do two things: 1. call my doctor again because this was a drastic change 2. call a physical therapist

I saw the physical therapist and she found a cervical rotation of my C1-C3 vertebrae. I felt instant relief after my first visit with her and after that I have had minor headache but she said that would be normal until my neck became strong enough to support my head.

I have had a CT and it came back regular and I have also had a visit with a neurologist and he said I looked fine too.

I still have a persistent daily right sided headache but it's not nearly as bad and I'm also apparently supposed to have migraine.

I guess I wanted to join this forum in order to meet others with the same pain that I experience...it makes me feel less paranoid that they missed something in all the scans and tests. I also wanted to ask if any of you have either seen a massage therapist or a physical therapist to alleve some of your headache...it certainly helped me.

holmesla

Regular Member

Joined : Jan 2007

Posts : 196

Posted 8/7/2007 9:12 AM (GMT -7)

Welcome to the forum! I can't say that I share the same pain as you. My pain was caused by a car accident back in December. The origin we have yet to figure out. I suffer from migraine headaches, tension headaches, occipital nerve pain, neck pain, shoulder pain, and muscle spasms, everyday for the last 7 1/2 months. I am Topamax, cymbalta, Relpax, Vicaden, Zanaflex, and Lidoderm patch. I have had two occipital nerve blocks (one on each side), two epidural cortisone injections, and they burned my nerve endings. I have been to the chiropractor and physical therapy. They tried multiple types of therapy, inlcuding massage therapy, and nothing has worked. I had x-rays, CT scan, and an MRI and nothing showed up other than I have whiplash. All this treatment and I am still in pain.

So it is possible for them to miss something in the scans. I have a friend that had a bulging disc. They missed it in the first MRI, but by golly it was in the second.

I am sorry if I am venting on you a little bit. Pain does that to me. I am so glad that you have been able to find relief! I finally am getting referred to a neurosurgeon, who specializes in the spine, so hopefully I am getting closer to an answer, or at least a solution that works.

youwoo

New Member

Joined : Aug 2007

Posts : 4

Posted 8/7/2007 12:24 PM (GMT -7)

I'm sorry that you have so many issues that cause you pain. They can't determine the origin of my neck injury or migraine...it's really horrible but it's nice that there are people to talk to about it. I think that I will have a follow up scan sometime in the near future. I understand how you feel...neck injuries never seem to get better and they cause a lot of other issues that can be discouraging.

Hopefully the neurosurgeon will be helpfull

Hang in there!

bob-o

Regular Member

Joined : Mar 2007

Posts : 37

Posted 8/9/2007 8:01 AM (GMT -7)

I've been suffering from occipital neuralgia since Nov., and I started taking Cymbalta and Flexeril (muscle relaxer) in March. I still have constant pain, but the medication has made it bearable. I tried physical therapy before we knew what was wrong, and that made it much worse. I tried a massage therapist at AquaTherapies, and that really helped (I went twice). But my insurance wouldn't cover it, so I haven't been back. (Now my husband gives me a massage every day, and that helps some) I saw a neurologist and a neurosurgeon before I figured out what was wrong with me - neither of them had a clue what was wrong! I'm thankful that the medication helps me to be able to live a normal life most of the time, but I don't want to just ease the pain - I want to fix what's wrong! So my next step will be to either go back to the neurologist and say "Here's my problem - how do we fix it?" or go to a chiropractor.

I agree - it's wonderful to be able to talk about this with other people who understand what we're going through! Even my neurosurgeon thought I was either depressed or crazy!!

I hope you get the help you need!

holmesla

Regular Member

Joined : Jan 2007

Posts : 196

Posted 8/9/2007 8:26 AM (GMT -7)

Bob-o, I think I spoke to you before about the occipital neuralgia and you didn't think that was what I had because I didn't have any tingling or numbing. Maybe it wasn't you, I don't recall. I am still in pain as you can see.

I feel I have a few issues going on causing the pain but I can't help but wonder if I do have a bit of ON. I do still have pain in the occipital nerve area as well as from one temple across my forehead to the other temple. Sometimes even between the eyes. It is the worse tension type headache I have ever experienced. Gosh, even if I put my hair in a pony tail it hurts. I can't imagine what else could cause my occipital nerve to hurt.

I am seeing a neuro surgeon in two weeks and I am hoping to get more answers. I feel I have a bulging disc or something on top of ON. then again, I am not a doctor.

I know that posture has a lot to do with my pain. Looking down causes pain. I have noticed in my sleep I sleep in the fetal position, with my head facing down. That is why I wake up in the worst pain. Scrapbooking causes such pain, because I am looking down, so I can no longer do the things I enjoy.

I totally hear you, I don't want to be on meds, I want to be fixed! It is so good to have this site and be able to hear that you are not alone. I mean it sucks that we all have to suffer, but at least we have support. Our spouses are a good support, but do they truly understand what we are going though? Unless they have gone through it, I don't think anyone can possibly understand.

bob-o

Regular Member

Joined : Mar 2007

Posts : 37

Posted 8/13/2007 8:06 AM (GMT -7)

holmesla, that may have been me, but if it was, I think I'd like to change my mind - you do sound like you have some ON problems! "Looking down causes pain" was a big giveaway - Before I got my medication I went to see the dr. and - in tears- held my hands in front of me and said, "I can't even look at my hands!!!" I'll be really anxious to hear from you after your visit with the neurosurgeon!

Nancy

holmesla

Regular Member

Joined : Jan 2007

Posts : 196

Posted 8/13/2007 8:30 AM (GMT -7)

Its been a long road trying to figure out what is wrong with me. For me, looking down doesn't necessarily cause immediate pain, but in a couple hours, or even the next day is when I get the pain. The pain i feel in the ON area is like I have been beaten with a baseball bat. Also the typical tension type headache, only the worse tension headache I have ever had. I have found that I sleep in the fetal position, with my head facing downward, which is why I wake up with pain. I am going to purchase a neckbrace to sleep in so that hopefully it helps. I am going to bring up the possibility of ON and/or bulging disk to my appointment with the neuro surgeon next week.

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