Sunday, February 5, 2012

Living With Chronic Pain & Migraines

With my lack of posts lately, I feel like it's time I share something that I've been avoiding. I hate to admit it because it feels like I'm giving in to it, which makes me feel like I'm letting it control me which is something I work so hard at not letting it do on an hourly basis. I am ashamed of it, and it makes me feel weak. After all of these years it's time to face it, as it's unfortunately part of who I am.

I suffer from chronic migraines, and chronic pain in my neck and shoulder. Are you relieved? Did you think it was something worse? For me, there isn't much worse. As I'm sitting here typing, my shoulder and neck are burning, and it feels like there is a fish hook in my tear duct, and not only is it stuck in my tear duct, someone is behind me pulling on it. That isn't the worst part actually. I'm just praying that it doesn't end up turning in to the ice pick in my eye and the hot axe on top of my head. This is the fear that fuels me on a daily basis. It affects how I act, every decision I make, and rips my plans apart at least once a week. On top of the pain, my energy level is beyond low. I am from the core, wore out tired and fatigued.

I have had headaches as far back as I can remember, and my first migraine memory was around age 16 or so. After I had my first daughter, they came with a vengeance. That's when I figured out my first trigger. Hormones. I had started taking the pill for the first time in my life, and they gave me daily migraines. Now while I am on my period I know that I will get a migraine or two. Or three. I've accepted that I will probably deal with this until I hit menopause and I'm ok with that.

I slowly figured out many more triggers. Perfume, flowers, nitrates (goodbye salami), preservatives in some bagged lettuce, lack of sleep, weather, and stress. These triggers can be somewhat controlled.

My best friend's wedding bouquet that gave me a migraine.

 There is one however, that I cannot control nor escape, and it's just about ruining my life. My neck and shoulder. My right shoulder started to ache during my second pregnancy. It felt like a headache in my shoulder. Then my neck on that same side started to spasm and stiffen up. It felt like a plastic rod stuck in my neck. Since I was pregnant, I couldn't take meds. I went to a chiropractor who did help give me some relief, but it was always temporary. I had to go twice a week to keep from getting migraines. See, what happens is that pain creeps up my head and once it hits that nerve, it's like a lightning bolt and it literally feels like you get hit in the face with a baseball bat which ends with an icepick in the eye. Not fun.

Over the years, including the doctors I am seeing now, I have been to 9 doctors for my migraines. I have done physical therapy, chiropractic work, injections in my shoulder, neck, and face, had a steroidal epidural in my back, taken countless pills that include triptans (which I still take), anti-depressants, anti-seizure drugs, and beta blockers. Side effects of these medicines include dizziness, drowsiness, muscle weakness, word loss, nausea, hair loss, weight gain, and diarrhea. Lucky me, I've experienced them all.

I have had a steady diet of at least 9 pills of Imitrex and/or Maxalt (triptans) for the last 12 years. Without these medicines I couldn't live the life I do now. The only other med that I took for a long period of time was Topamax, which is nicknamed Dopamax due to the fact that you forget what you are saying mid-sentence. You stare at an e-mail trying your hardest to remember how you spell the word "door"...and I'm not even close to joking. When I made a huge mistake on my biggest account at work, I knew it was time to get off of it. I am a telephone sales girl and it had gotten right down embarrassing to talk to customers on the phone. I need my job and I can't make afford to make mistakes like that.

It seems that every doctor has a pill to throw at you. I would explain everything above to whatever doctor I was seeing at the time, and none of them took me seriously. They would hear "migraine" and throw a pill at me. Neurologists would do their little endurance tests on me, and then throw another beta blocker at me. Pain specialists would do their endurance tests on me, and tell me nothing was wrong with me. My last pain doctor finally sent me to have an MRI, and he told me I had degenerative disc disease. He said it was a little unusual for someone my age unless I had broken a bone or had an accident. I then confided in him that in my past, I had been in an abusive relationship and their method of abuse was to grab me by my arms and lift me off of the floor and bang me against the wall numerous times. The doctor literally stopped writing and looked up and asked, when did this start? I said almost in slow motion, "the first time was right before I got pregnant with my second daughter". This stopped me in my tracks. Every time one of those 8 doctors asked me when my shoulder pain started I would say, "when I got pregnant with my second daughter". I had never put two and two together before.

That pain doctor told me that if I was still carrying that pain around and not letting it go, it could manifest in to pain in the body. He then referred me to another doctor, a psychiatrist. He was a doctor that deals with people in chronic pain. He said he didn't want this pain to control me anymore and he thought that this doctor could help me with some coping skills. Why not right? So I went.

This particular doctor was ok, but I had been in counseling before and I call it a very expensive friend. Neither the counselor or this doctor gave me any coping skills, but instead just had me re-live everything about my life. I have friends for that. I went to him around 5 times or so and not once did he give me any coping skills at all. Instead he would have me talk with his assistants about my crazy life to school them I guess.

I did gain one important thing from that doctor. During one of my sessions, I had mentioned an article I read that my best friend sent me by Gwenyth Paltrow's site GOOP about stress manifesting itself as pain in the shoulder and back. I said to the doctor, "I've just decided that I'm going to get better on my own. F the doctors and their drugs, I'm taking this in to my own hands". This obviously intrigued this doctor as he would ask me about this statement over and over again. I explained to him that after my last appointment with my pain doctor I was done with those kinds of doctors. He had given me a prescription for a nerve blocking type medicine with side-effects that puts the ones above to shame. I felt like he had "thrown the towel in on me". That's when this psychiatrist gave me a card for a holistic doctor that actually deals with insurance. I had no idea at the time how much this little card would change my life.

I made an appointment with this new doctor after my flex card got re-loaded in the new year. When I walked in to the office, it had that new age meditation type music over the speakers and the waiting room was loaded with magazines about pain management and whole, clean living. What a breath of fresh air.

The doctor was the same way, soft spoken and she really listened. She took blood work which resulted in me being seriously low on vitamin D and magnesium. Deficiencies of vitamin D include chronic fatigue, bone pain, weakness, muscle cramps, and difficulty losing weight. Deficiencies in magnesium include fatigue, weakness and muscle spasms. She gave me some supplements to take and within a week I can honestly say I felt an improvement. My energy levels slowly increased. Today I feel much more awake and alert than I had a month ago.

She also suggested I go to physical therapy again. This time, the PT is an osteopathic doctor. She does osteopathic manipulation. In one appointment, she told me I had scoliosis of the neck, and that there was something going on on the right side of my face underneath my eye. (fish hook!) I left that appointment feeling hopeful for the first time in years. This doctor was telling me what was wrong with me instead of the other way around.

I have now been to 6 appointments, and although I'm not completely pain free, I have had some days pain free. Before I was in pain 100% of the time so even a day or two pain free tells me that I am improving, and that makes me feel amazing. At my last appointment, she figured out that my rib cage is lodged down, and that is making the muscle in my neck stretch beyond it's capacity, so it's grabbing my shoulder for help which leads to all of my nerve endings. She then said, "the first thing that comes to mind is this" and she grabbed my arms gently, re-creating my past abuse. She thinks this is exactly what caused this. She also told me that I needed to give myself permission to let it go. She said as she was working on me she became emotional. I was speechless as I had also become emotional as she was working on me. Dealing with these issues will have to be explained another day, in another post.

Being in pain makes you very irritable towards  your kids and family. It makes it so you can't participate in the many things in life that you want to. Sometimes I get very angry when I think of all of the time that this has stolen from me. I do not want to give the abuse or this pain anymore power or time or energy. For the first time in a long time, I feel like I might be able to manage this and I feel like shouting it from the mountain tops. I do believe that attitude is everything, and I want to claim this healing as my own. I know God is going to heal me.

So there you have it. I'm hoping now you can see why sometimes there is a lack of posts, or a lack of focus, or if you see me in person, I'm not exactly perky. It's really hard to talk to someone when you have an icepick in your eye and a hot axe in your head. I'm sure you understand.

I welcome any advice or would love to hear your any of you suffer? I sure hope not.

I am linking this up to Thankful Thursday at


  1. First of all, wow. I mean, wow! Your accomplishments are staggering in light of all this pain you're dealing with all the time. You are obviously a very strong person.
    And second, please, please, PLEASE send me the name of your new "doctor". I've been searching for holistic doctors (although I'm a little leary of new-agey people) that will accept insurance. I found a great office a year or two ago where they would do a hormone profile, checking into what deficiencies a person has (like the Vitamin D and Magnesium you mention), but they absolutely refuse to deal with insurance companies. I couldn't justify the $700+ it would cost out of pocket to go.
    I have come to loathe the medical profession. I have terrible trouble with sinus issues, even had sinus surgery when Josh was under 2 years old. And every time I go to a medical dr., they just want to throw pills at me until I can't stand it. And the new thing is to prescribe a strong antibiotic and a steroid with it. Well, guess what steroids do? They mask allergy symptoms. So after my steroid rx ran out, 14 days into the 21 day antibiotic rx, I started having serious symptoms from the antibiotic. I thought it was the steroid, but the pharmacist said no, it was the antibiotic, we just didn't see symptoms before that point because the steroid was countering them. Ridiculous!!
    After about 4 months of continuous dr. visits and antibiotic consumption, I gave up in disgust. The sinus infection, however, did not. It was still going strong. It suddenly occurred to me to go to my chiropractor, a strong Christian with a preference for supplements rather than prescriptions. Within 10 minutes he easily diagnosed that the infection was likely fungal, not bacterial, and therefore antibiotics would do nothing. He told me to go home and do my neti pot rinse with baking soda (which would kill the fungus) and 4 days later I was free of the infection.
    Again... ridiculous! How could a medical dr. not know this stuff?!

    1. If it isn't in their little box, they don't think it exists. A lot of docs I have dealt with seem to have too big of an ego in thinking they know it all. Honestly I think it's BS for a doctor to tell you how you are feeling. I have had that happen so many times. I told the last doctor, I know this pain is REAL and you can't convince me otherwise. I'm so sorry you've had to deal with all of that nonsense and suffer through all of that pain. It's really no way to live, is it? That's why I still do so much. I refuse to give this pain anymore power. Sometimes I do have to give in and cancel plans, but I truly try to get through it.

      Here is the info you requested:

      Heartland Holistic Health Center
      Jacqueline M Stoken, D.O.
      Physical Medicine & Rehabilitation
      Osteopathic Manipulation & Acupuncture
      1454 30th St., Ste 109
      West Des Moines, IA 50266
      Telephone: 515-327-0046

      I hope she can help you!!

  2. For years I suffered from Post Traumatic Stress Disorder. This was the result of having an abusive husband - now ex. It was odd that I never suffered PTSD while married (always working on that fight or flight thing) I can remember the bed shaking when I would hear him come home late at night... it was my body involuntarily shaking. I was told that it was my bodies way of releasing the stress so I wouldn't have a heart attack. My PTSD resulted in hives, hair loss & weight loss.

    One therapy that I would highly recommend is an acupuncturist. I have at times used both acupuncture & chiropractic to help with pain.

    Every day forward is a day stronger. You are a survivor.

    1. This doctor I am seeing does acupuncture too! After I get my shoulder a bit more under control I am going to try that too. I've heard from so many people that it works really well for pain. I do have trouble letting it go I suppose, and it kind of carries over to my current relationship. I'm working on it every day. Thank you for the kind words of encouragement and support.

  3. I'm sorry that you are dealing with chronic pain, but happy that you have recently found at least a little relief from it. I know how you feel as if you are giving in to it by revealing it. I have a similar post on my blog concerning back and leg pain. My daughter took Topomax for seizures. It didn't help them and she never spoke a word while on it. I often wonder if it may have done some permanent speech damage as her speech is very limited now at 13. I will be praying for your continued healing!