The darkest nights and I’m still standingLast Updated:
On June 21st, during the Migraine Awareness Blogging Challenge, I shared my biggest fear. Well, worse than I feared has happened and I am pleased to announce that I have survived to tell the story and keep on fighting. If it were not for this worldwide network of fellow Migraineurs and the unwavering support of my husband, I might have given up. You all deserve credit for helping me find the light at the end of my very dark tunnel.
The most recent nightmare began the day before Independence Day. On June 22, I wrote about my “Game Changer” – the time I discovered how to enjoy the fun and fireworks of the July 4th Independence Day here in the U.S. I quickly realized that this would be the first July 4th in 8 years that I would not get to participate in the fun.
The morning of July 3rd was the start of nearly 3 days of unrelenting pain due to a combination of Cluster Headache attacks and Migraine attacks. It was also the same day that my doctor gave me the sad news that Botox was not effective enough to warrant continued use. I would not be considered a candidate for Trigger Site Release Surgery either. I got this news in the middle of a Cluster/Migraine attack that had been unresponsive to any kind of intervention for 9 hours. Not surprisingly, I broke down, crying hysterically at the news. My husband and I made plans to stop by the Urgent Care on our way home to see about getting a shot of my favorite “migraine cocktail” to abort the attack. Much to our great fortune, the Botox doctor offered me the option of a nerve block. The idea of aborting an attack without being knocked out for hours sounded appealing, so I gladly accepted his help. Within minutes the pain went from an 8 to a 1. I was amazed and thrilled. He dictated notes to both my PCP and neurologist right there in the treatment room recommending I receive this procedure for all future migraine attacks that did not respond to Zomig.
We decided to skip the Urgent Care and went straight home, happy to have found another effective weapon in our fight against Migraines. Unfortunately, the relief did not last. I continued to experience numbness on the surface of my head, but deep inside the pain began to throb even harder. I couldn’t reach the pain with ice or heat and no amount of massaging would get to the pain. It was as if the nerve block “locked” the pain inside my head and it had nowhere to go…so it throbbed and stabbed for hours. It went on like this for 3 days, waxing and waning, but never going away completely.
On Friday, I had a chiropractic appointment for another issue and decided against my better judgement to mention the long attack to him. He gave me some cock-and-bull line about “vascular headaches” and the need to take Ginseng. I tried to argue with him but got nowhere. His knowledge of migraines is hopelessly lost in decades long before the discovery of corticol spreading depression. To make matters worse, he has an even worse understanding of herbal medicine. Otherwise he would know that Ginseng actually triggers Migraine attacks in some people (namely, me). So I take a big sigh, shut my mouth, an thank him for the good job he is doing to help heal my painful right shoulder. It is much improved, so he is very good for some things. Finally on Friday night it stopped.
Saturday morning I was awakened by a Migraine that took me only an hour to resolve and for the rest of the day I was pain free. I still had some tenderness at the injection sites from the nerve blocks but nothing that felt like a Migraine.
Sunday morning dawned like a day out of “Groundhog Day“. The same pain greeted me so I responded with the same treatment that worked so well the day before. Only this time nothing happened. Well, I wouldn’t say “nothing”. The pain continued to intensify, vacillating between a 6 and 8. I quickly checked the Urgent Care weekend hours and ask my husband to take me in for that long overdue “cocktail” that is my saving grace when at-home treatments fail. There were new staff members present who were not familiar with my case (I am a “frequent flier” so they all know what to do with me). This time I get questions like, “Have you ever tried Imitrex?” (even though my chart clearly states that it doesn’t work for me) and “Have you considered Depakote?” (even though it is listed on my chart as an allergy!). Then the doctor comes in an appears to be sympathetic, stating he can tell I am in pain and that he knows how a Migraine feels. My husband and I breathe a sigh of relief as he agrees to order my “cocktail”. After several minutes, the nurse returns with only 2 vials, not 3. I accept the Phenergan and Toradol injections and question her about the missing vial of Benadryl. She agrees to check with the doctor who quickly returns to state that he doesn’t think it will do any good, but “doesn’t have time to argue with me”. The nurse returns with a shot of Benadryl and sends me on my way. I prepare to go home and sleep it off.
But there is a problem. I’m not getting sleepy. All the way home I try to rest, but am completely aware of my surroundings. This continues all day. Finally at 5:00 I start to get desperate and reach for the Flexeril (muscle relaxer) and leftover Hydrocodone from an earlier dental procedure. Still, no change. By 9:00 p.m. I have reached my limit and call the after hours number for my doctor. The on call doctor finally calls after 2 tries (and 90 minutes later) just to tell me to go to the ER.
I get to the ER and 2 nurses later, they finally find a good vein and start and IV. This doctor doesn’t mess around! He orders another round of Toradol, some Ativan, IV fluids, Prednisone, and Magnesium Sulfate. We wait an hour and my pain drops from a 9 to a 6. He is not satisfied enough to send me home, but has run out of Migraine-specific treatments. He reluctantly offers me Dilaudid. In desperation I accept, knowing full well it won’t stop the Migraine. My only hope is that it will help me sleep until the Migraine has run it’s course.
Monday morning I wake to a level 2 pain in the same place it has been sitting since Sunday morning. I hopefully think that this is just the last of the Migraine leaving my head and dress for the day. Despite my pain, I manage to get my son to our family doctor for his camp physical. My pain worsens during the wait, so I ask if she can squeeze me in for an appointment, too. She agrees, is sympathetic, and admits she is just as stumped as I am. Neither one of us know what to do next, so we call the neurologist. It takes all day to hear back, but I do finally get a call from the neurologist’s P.A.
My dear husband is exhausted from working all day on only 3 hours of sleep, but he agrees to pick up the meds and dinner on his way home. He crashes not long after and I drift off in a Valium-induced sleep as I hear him say “good night”.
It’s Tuesday morning and I am still in mild pain — around a 3 and it’s moved back to the “usual” spot around my right eye. It’s a mild cluster attack and I’m out of Oxygen. I’m hoping it will subside soon so I can get an O2 refill before the next one hits. Meanwhile, I continue to take the Valium every 4 hours and have started a course of Prednisone to stop the inflammation. I’m not crazy about using this and only agreed because it’s a short course. While I take it, I cannot take Aleve or Excedrin Migraine, only Zomig. Side effects may include weight gain, acne, irritability, mood swings, and hallucinations. Darn, I just started making headway on my weight loss after getting off Neurontin. For the good of my clients, I am taking time off this week so I don’t say something completely psychotic in sessions while under the influence of this drug.
My neurologist has also started me on a new preventive, Keppra. She says that those who cannot tolerate Topamax sometimes do better on this one. We’ll see. I’m more skeptical than hopeful at this point. It’s not that I have given up (although the thought does cross my mind occasionally when the pain is unrelenting), I’ve just been fighting this too long to get excited before I see proof. I will take the medicine faithfully as prescribed and give it at least 90 days on each dose before I ask for another options. I know how to be a good patient.
She has also ordered a sleep study to see if any sleep disorders are complicating my treatment. It’s scheduled for Saturday night. I am very careful about sleep hygiene, but struggle to get back on track when Migraines disrupt my sleep regimen. I am curious to see what happens. It will be interesting to find out what my sleep quality is really like.
I guess the past few days are really my worst nightmare. 3 days of unrelenting pain, followed by one brief day of tentative relief, then 3 days of unrelenting pain beginning again with no effective treatment. Hmm…I think the Ginkgo stopped preventing the Clusters and now they are triggering Migraines. At least that’s the working theory my “migraine team” is using for now. So now I am back to dealing with 2 chronic pain disorders. It’s time for a new approach.
I’ll be okay as long as I stay pissed off. Pity parties are my enemy.
I’m still standing.
I’m still in the fight.
Take that, Migraine and Cluster monsters!
Where were those theme songs? Oh, yeah…here you go.