The Fight Continues

After a 76 day migraine it finally broke on July 6th, I then went 9 days with 2 migraines that were able to be treated with rescue medications. On Monday I posted about how I believed I was back to my baseline, but I mentioned that I had a migraine at the time and was excited I was able to take rescue meds and believed they would work, they didn’t.

can you see how the right side of my face is affected by my migraine?

On Monday I took Maxalt twice, and Toradol, it eased the pain some, but did not take it away.

On Tuesday I did not use my rescue meds, I used Ginger, my IceKap, and medical marijuana throughout the day, and this kept things to a tolerable level.

I woke Wednesday in excruciating pain, with severe light sensitivity and vertigo. I could not lift my head, or focus enough even read medicine bottles, but I could find the Maxalt in my night stand by feel, so I took that. I texted Stuart by talk to text and asked him to come home to help, because I couldn’t make it to the bathroom. He came home, got me more meds (Toradol, and another Maxalt) and worked from home for the rest of the day. I also used my alternative therapies throughout the day. Wednesday was a very challenging day, but by the end of the day my symptoms had improved dramatically and I was able to sleep.

Yesterday I woke feeling pretty good, the migraine was still there, but I thought it was on the way out. I decided to greet the day with joy and immerse myself in the pool. I had a nice swim, the water always makes me feel better, but I don’t get out there enough. When I came in, the pain started to increase. Then a little while later I stood up, walked across the room, and the pain hit like a hammer, I felt a whoosh, and the room went black. I slowly collapsed to the floor and spent the rest of the day in my chair fighting vertigo. I decided to break the rules and use a rescue medication a third day this week. My doctor had given me a sample of Migranal to try, it’s dihydroergotamine mesylate (DHE) in a nasal spray. I haven’t tried it yet because my insurance doesn’t cover it, but thought I should try it since I’ll be seeing her on the 26th and today would be a good trial. I don’t know if it’s just the sample that’s like this, or if it’s always like this, but this stuff is a pain to get started. You have to break a metal seal on the bottle, pull the plastic stopper out, take the plastic cover off of the sprayer, insert the sprayer in the bottle, prime the sprayer 4 times, THEN you are finally ready to use it. Then you spray it once in each nostril, and do not sniff or tilt your head back (that is oh so difficult) and repeat in 15 minutes. That’s a lot when you are in severe pain with light sensitivity, nausea, and vertigo. It did reduce the pain significantly, however it did not completely break the migraine.

That brings us to today. It’s still there. I’m getting a massage tomorrow from an amazing woman, the last time I saw her I left in the least amount of pain I can remember. It didn’t last long, but wow, amazing. I look forward to feeling her magic.

On the 26th I’m getting a CTA or my head, that’s a CT scan where they use a contrast to look at your arteries. I also see my migraine doc on that day. I don’t think the scan will show anything, but just to be sure. I’m a little wary of it, I’ve had a lot of scans over the last 10 years, that’s a LOT of radiation. How much it too much? Since I can’t have MRIs they use CT scans for everything, that has really been a lot of CT scans.

I am so very grateful for the days I had without a migraine, it is encouraging to know it is possible. I’m also encouraged that the rescue medications are doing something, even if they aren’t taking it all away this week. Living with chronic migraine is a challenge every day, I never know what to expect. I found myself leaving the moment, fearing the future, longing for the past, I am being gentler with myself now, and being here in the now. Today is all I have, I will be here in this moment and accept it as it is. I know I can handle this moment, it is all it is, a moment, and I will deal with the next moment as it comes, not before. There is so much more to my life than my symptoms, it is time to remember that and take notice, each and every day.

My Story – A trip to the Hospital – Migraine Awareness Month

We all have our story, this weekend I added to mine.

I’d like to give you a little bit of background on my headache story. Two months before I turned eleven I had my first period, and my first migraine. It was labled a “menstrual headache” and I was told most girls got them. On my 11th birthday we were going to the lake to go swimming and I was hit with a nagging headache, this headache never went away. I was labeled with allergies and sinus headaches. These labels stuck for many, many years. Now my migraines have progressed to the chronic level, I have a migraine over 20 days a month, and it seems they are becoming intractable. The medications I used to use are not longer working, and I’ve tried many alternative treatments. My daily headache is never below a 3. I also have cluster headaches that normally show themselves in the Spring and Fall, but sometimes more often. I haven’t found any treatments for the daily or cluster headaches. Most days I haven’t given up hope, but I must admit that some days I feel like I can’t go on. That is my history in a nutshell, now for the story of the weekend.

Today is the 54th day of a running migraine. There has been no relief. The pain has been variable anywhere from a 6 to a 10+ (there have been times the pain has been greater than I could imagine).. No medication has helped to relive my symptoms which include much more than pain. When most people think of a migraine they only think of the pain, but it is so much more than that, I experience numbness on the right side of my face, sometimes traveling down my arm, my face sometimes droops, my vision blurs and will double and dim to the point I can’t see, I have extreme light sensitivity, and sensitivity to smells and sounds,, I experience dizziness and vertigo that varies in intensity, and extreme nausea….these are just a sample of the added symptoms that I can experience during at migraine, others can experience different symptoms. Migraines are so much more than a headache they can even occur without any pain at all.

At present my neurologist is out the the country. I messaged her office last week and told them my situation and they suggested I go the the Emergency Department to get a “Migraine Cocktail” and some hydration. I voiced my concern about the torture that an emergency department can put me through, the bright lights, the smells, the noise, the wait….but I was assured if I called and reserved a time to come in I wouldn’t have to wait long. We did call and set up a time of 4:30pm on Thursday, I arrived 10 minutes early and was triaged right away, then I waited SIX hours before I was seen. I realize I was low on the triage list, and they had a number of emergencies but sitting there in extreme pain was absolute torture. I almost went home. I had a seizure in the waiting room and no one paid any attention. I do have to put in there that we were in a quiet waiting room with dim lights because of my light sensitivity, but after they were informed, a tech came and took my vitals, but no one else came. I decided it was time to leave. Stuart went to tell them we were leaving and at that time they realized how long we had been waiting, and they got me to the top of the list.

After I was taken to a room I was surrounded by extremely nice nurses and doctors immediately. They made a plan and had medication going within just less than an hour. The doctor told me they had to start on the first cocktail, but he didn’t think it would work on me, because he had a feeling I was a tough case. He said after that they would do a second cocktail and if that didn’t work they would admit me and there were all kinds of things they could do then. Neither of the first two cocktails worked, although the second one did help me sleep. I was admitted, after many hours of waiting for a room

I was started on a new cocktail that was very much like one that I had in the ED, but they wanted to add Imitrex (sumatriptan), I refused this medication because it causes me to have tachycardia. I soon saw the neurologist and he put me on a cocktail of DHE, Toradol, Depakote, and Magnesium every 8 hours for 24 hours. He then told me that if it did not work he could do no more and I would be sent home to suffer there instead of suffering in the hospital.

The cocktail knocked it down to a moderate level, until they stopped it. After they stopped it a new nurse came on duty who had a scent that triggered me. My migraine shot up and I was terribly sick. It did not come down, and I was sent home “to suffer”.

Today I woke up in intense pain that continued to build, within an hour it was so excruciating it was beyond what I could imagine a migraine could be. I was not sure if the pain would diminish. If it hadn’t I would not have been able to carry on. I had to admit my thoughts have gone there, but migraine can kill. All I can hear in my head is, “You can SUFFER at home”

My doctor is the only headache specialist in this area. According to the American Headache Society currently only 416 specialist are certified by the United Council for Neurologic Subspecialties (UCNS) to treat an estimated 36 million migraine sufferers over age 12 in the United States. I’m lucky to be able to see one, but when she is unavailable it is very difficult. She will be back in the office on the 12th, however she has jury duty the first week of July, I don’t have an appointment until July 26th. The doctor I saw in the hospital said he was going to talk to her office to see if he could get me an appointment earlier. I doubt that will happen.

There is a headache clinic at the Mayo Clinic in Phoenix. If my doctor can’t help me I’m considering going to the clinic for an evaluation It is 110 miles away. Does anyone have thoughts on this? I’ve heard some conflicting results from friends about their experiences with Mayo, I’d like to know if anyone has any thoughts.

This is Migraine Awareness month therefore, I’ll leave you with a few more facts about migraine.

  • Migraine is the 6th most disabling illness in the world
  • Migraine often runs in families.
  • Migraine is often misdiagnosed as tension or sinus headaches.
  • Migraine also affects children.
  • Pain does not have to be present during a migraine.
  • More than 4 million adults experience chronic migraine with over 15 migraines per month.

If you know someone with migraine, be gentle, try to understand, Sometimes it can change you. It can steal your life. It doesn’t mean they don’t want to spend time with you, often it means they can’t. They still love you. Love them.

Short day

The day started out okay. I could have slept longer but Kiki decided it was time to play, and who can argue with that face?

Kiki

It was a normal morning, I had my breakfast, took my meds and thought about what I could accomplish today. I only had 3 things I wanted to get done 1- spend some time outside, 2- fill out insurance information for cochlear implant replacement, 3- do my new exercises.

Out of the 3 the exercises were the most important, so I decided to do that first. Then I looked down at the floor and thought, “There is no way I’m getting on that dirty carpet and have my allergies go crazy again, I’ll vacuum it first.” So, I picked up everything on the floor, moved things around, pulled out the vacuum and vacuumed our small living room. It was going well, then right before I finished I had a shooting pain through my head, the room spun and got dark, I had a hot flush, got nauseous, and had to sit down fast. Another vestibular migraine.

The pain lessened in intensity in a relatively short period of time, but I’ve had continuous other symptoms throughout the day. I feel awful and can’t trust my balance at all, so I basically spent the day curled up in my chair watching Netflix (I saw a talk by Brene’ Brown and an episode of Queer Eye) then I watched cooking shows (which made me want to bake bread and make my own crackers.) Have I mentioned I’m obsessed with The Great British Bake Off? I watch it over and over, can’t wait for a new season to come to the US. Oh, it’s called The Great British Baking Show in the US if anyone is interested.

Now I’m off to bed, having only accomplished, let’s see, nothing on my list for today; and that’s perfectly okay. I got the living room vacuumed!

I do believe the new antidepressant must be working, 2 weeks ago having a day like today would have made me feel worthless, useless, and filled with dread. Today I can take it for what it is, life at this moment. Nothing more, nothing less. I guess it was a good day after all.