Tuesday, June 3, 2014

UCTD and headaches

What a wild few months I've had. I have a new neurologist since I received my VA benefits. He is a blessing! After 7 1/2 years of being told and being treated for migraine headaches, he did further testing and has come to the conclusion that these are cluster headaches. Generally speaking, women are seldom the victim of cluster headaches. What is a cluster headache? It is hell~worse than a migraine. It is called the suicide headache. This headache is rarely treatable with migraine medicine alone. Cluster headaches go in cycles. Cluster headaches generally start at night. Mine start between 10 PM and 1 AM. Mine for instance, arrive every 3 weeks like clockwork. If it is starting on the left side of my head, I get a horrible tooth, jaw and eye pain for 24 hours. There is no chewing of food. Then, I get pain so severe it travels from the eye to the back of my head for up to 3 days. Once this headache is gone, I generally have a one day reprieve before part 2 begins. Migraine meds rarely worked. I eat Maxalt like candy. If the headache begins on the right side of my head, I wake up with blurred vision in my right eye. Then, my hands hurt so bad that I can't make a fist. Towards the middle of the day I must sleep. I get so tired I can't function. Once the headache starts, it travels from behind the eye to the back of my head. I can feel the vein pulsating. I can't sleep lying down because of the pressure on the back of my head. I sleep maybe 2 or 3 hours. During the headache, on either side, I can seldom move off the couch. Sounds are unbearable. Indoor lights don't bother me, but sunshine beating down on me is painful. These also last 3 days. So, one week a month, I have this headache. Youtube has very graphic videos of cluster headaches. I am thankful that mine are not as bad as the ones I've seen.

Conventional treatments I've tried.

  • Maxalt
  • Topomax (Dope-a-max)
  • Inderal
  • Tylenol with codeine
  • Sumatriptipan shots

Natural remedies



Black Cumin Seed Oil (liquid and gel cap)

Magnesium Oil



Ice, heat, both

Epsom salt baths

Honey and cayenne pepper

Ginger (mostly for nausea)

And so many more that I have forgotten about. 7 1/2 years of every remedie known....

So far so good with this new neurologist. He has a treatment plan in place and we are still keeping track of these cluster headaches. I am continuing with Maxalt, but we have added Verapamil. This is a blood pressure medicine. I do NOT have high blood pressure, exactly the opposite, until right before the headache. Then my blood pressure shoots up. We were on 120 mg a day, but have recently moved it up to 180 mg a day. I am completing my first full month on this medicine. Results...part one of the headache was less pain and 1 fewer day. Part 2....not too much of a difference. The right side of my head is the one that is the worst. This time I had to use my injection. A plus with both headaches, I was able to get up and move around, even go to a party.

I have now been on Verapil 180 mg for over a month. I did get part 1 of the headache on my left side and it was awful. With that being said, I had just had an extremely busy two weeks with very little rest. It is 10 days later and part two hasn't started. I did get just a few minor pangs, but after work decided to be "quiet" and rest. This morning I feel great and plan on going for a run before work.

Today it has been more than 3 weeks and no sign of headache part 2. I am a happy girl! This is the longest I have gone without a headache in 7 1/2 years. Could this be the "cure" for me?

Since I've not had these headaches, I am back to running. I ran 3 miles several times in the past week. I love to run. It is my time. My time to reflect and talk to God. Unless you are a victim of cluster headaches or migraines that last for days, you can't imagine what a relief it is not having to schedule every little thing I do around them.


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