Having A Headache EVERYDAY

Having a headache everyday for over 11 months now has sucked to say the least! Its why you see less of me posting and showing up all over places.  (Don’t worry I am under the care of a doctor and I’ll discuss later) Some days are worse than others and most aren’t to bad.

I have had a constant headache since November 2, 2016. On that morning I woke in the wee hours of the morning to a terrible migraine like I’ve had a few times a year for many years. I took some Tylenol with a Coke and laid down to wait for it to go away. After 3 days of this and no changes, we went to my primary doctor.

Full Migraine

This is where it gets tricky for me. I am allergic to Motrin and aspirin. My body also doesn’t process pain killers properly. There is very little that I can take to control pain. The good thing is I have been this way for as long as I can remember. I have learned some relaxation techniques and similar things that help me to live with the pain. Have any ideas to help control pain, comment below! I would love more ideas.

So my doctor prescribed some muscle relaxers thinking my tight shoulders and neck maybe causing the headache. Few days more and still no results. We then called my doctor and he called in stronger muscle relaxers. Again no results. At this point I was in severe pain almost to the point of it causing me trauma. We headed to a good hospital in a major city hoping for answers. When we first arrived the treated me like a drug addict just seeking medication. It was horrible. My husband finally yelled at the doctor that I was allergic so they could shove their pain pills up their butts. We wanted answers and results not pills. At that point the hospital did a CT Scan of my brain and didn’t find anything significant. They gave me a strong muscle relaxer in an IV and I finally got a little relief.

Finally SOME Relief

From that day on my headache changes all the time. Its more than daily, sometimes in changes by the hour.  I have had issues with muscle spasms in my spine, neck, head, and shoulders for over a decade. My husband and I thought that those spams had something to do my headaches. We went to a pain management doctor who felt the knots I get in my head. He discovered that some of the knots weren’t knots it was swollen lymph nodes that needed to be checked immediately.

This scared me beyond anything. I had just had a scare with a growth in my mouth that a doctor had told me could be cancer. Of course searching swollen lymph nodes didn’t ease any fears. I scheduled an appointment with the Mayo Clinic in Jacksonville Florida. I heard they were one of the best research hospitals in the nation. Plus they are on my insurance and about an hour away.

A Diagnosis

I was scanned, poked, and looked over by many specialist for about 2 months.  The neurologist (my very favorite doctor ever) diagnosed me with Chronic Daily Headache at first. As time went on the more in depth scans were done. the diagnoses changed to New Persistent Daily Headache. Its not expected to ever go away. Another of the specialist diagnosed my muscle spasms as fibromyalgia. That was a very hard diagnosis for me as I cannot take pain meds and I know how painful fibromyalgia can be. The fibromyalgia also triggers the headaches, which sucks, but it is what it is.

To combat the headache I have been put on different medications. So far I haven’t been able to tolerate the two that have been tried. I lost 30 pounds in a few months. Over half my hair fell out from the stress of living in pain all the time. I have trouble concentrating, I can no longer spell well ( I used too be great at spelling), I can’t tolerate bright concentrated lights or loud noises. I really can’t leave my house after dark because the headlights of cars (whether driving or not, I have motion sickness so I have to watch where I go) will give me a bad migraine for days. My poor family is having to deal with me unable to do normal activities. If you are a follower of my blog before this last year you know I love to cook. I make everything from scratch and enjoy it. Since my headache started I only cook a few times a week. My family has eaten out more in the last 10 months than we did in 10 years!

Some Medication

I am currently on an anti seizure medicine that helped take 75% of the headache away.  I gained back the weight that I lost (not that I needed too) and my hair started growing back. Unfortunately the medication is causing me not to sweat properly so I overheat easily. I almost had heatstroke about 9 weeks ago and had to decrease my meds which means my headache is increasing. I am starting to loose weight again and struggling to focus because of the pain. I fear my hair falling out anymore. Its grown back some but not that much.  I went thru a period of complete devastation at the thought of having to come off this medication. It takes time to slowly come off, and then slowly start something else.  The process is about 3 months of little to no medication.

After talking with my primary doctor he doubts any of the “nerve blocking” medications are going to have much different affects on me. My body is just very sensitive to chemicals. After this conversation and one with my neurologist we have decided to stay at the reduced amount for now and see how my body handles it. All the other side effects of it are manageable. I want so badly to increase to what I was taking. 50% relief isn’t much and on the bad days its nothing. For now though its the best I can get.  Writing and concentrating is difficult (this took me over three months to write). I am grumpy with my family even though I don’t want to be. I have a hard time telling if I have a sinus infection, bad tooth, or anything wrong above my neck because of the constant pain I have daily. I had a severe sinus infection from this. It felt like all my top teeth were falling out. I couldn’t tell I thought it was just my headache worse for those weeks.

A Positive

On a positive note I did find a way to combat the pain of the fibromyalgia. I purchased a nice bike and ride as much as my “don’t sweat body” allows. (about 4-6 miles in the Florida heat)  Riding helps to stretch those muscles that otherwise spams on me. I never would of thought that riding could prevent lots of pain. I cannot wait for winter to come so I can ride even further!  I hope every day that one day my headache will just be gone as quickly as it appeared but I fear I will be celebrating a one year anniversary and probably two or three as well.

I try to laugh at everyone that shares their headache stories and remedies with me. I have either tried it or can’t. Most of the time I just smile and thank them. Other times I go home and vent to my husband that someone actually had the nerve to complain to ME about having a headache.  Sometimes it gets my hopes up to hear that maybe this will end but most days I just survive hour by hour hoping I can care for myself and my family. Maybe make an event and put on a smile pretend for a while that I don’t hurt.

This Really, Really Sucks

Some ask then why take the meds if they cause you such side effects. Well its quite simple, I call this a headache but it is a full blown migraine at least an hour every day with medication. Some times like this week its worse. I have had the last 3 days of migraines almost all day, that at times makes me nauseous up to a dozen times a day. We had hurricane Irma go thru almost 6 weeks ago and my husband is a lineman. I think the stress of his 16+ hour days working under such dangerous conditions so sleep deprived have caused my head to hurt more. Not to mention I am barely sleeping so I can see him. So I want medication because its not just a little headache, it doesn’t go away EVER, and its not something I want my family to live with.  My living with pain pushes people away. Friends don’t understand me canceling all the time, family gets tired of me being grumpy. I fear before long I maybe all along. I try my best to put on a happy face and cope the best I can but this really, really sucks!