Dr. Raab Visit #5

Today was a better day. Less pain, more possibility.

Yesterday I had taken ibuprofen in the afternoon and then at bedtime dug out my old expired Klonopin which I used to take for those strange seizures/spells/attacks I used to have. Took half of a .5 mg tablet and slept 7-8 hours. And then took my daily right sided head pain and went to Ocean to see Dr. Raab.

Her office is a calm refuge. I go there and I know she will hear me and try to help me. Here is the update I took her:

Good News=

1. Got porphyria test sent off. Will have results within a month.

2. Two weeks off Flonase nasal spray and nose bleeds have almost entirely stopped. (Had been on Flonase for one year. Worked wonderfully for allergies, but nose bleeds began late last summer. Will not ever take this drug again. Could this be a factor in what is wrong with right side head? Did I grow subpar blood vessels in head?

3. Tried Imitrex. Neither a miracle drug nor something that landed me in ER. Mild to moderate relief with not too many side effects.

4. The 10 day migraine was less “complex” than times in past. Severe Pain but very little aura, not so much vertigo, not as much nausea, and definitely not so much of the scary stroke- like symptoms with speech delay and searching for words/saying the wrong words.

Not as Good News=

Ten Days of Severe Head Pain/Migraine coinciding with period.
Day 7 considered throwing self off George Washington Bridge.
Day 9 wondered if I could hire someone to kill me quickly.

Day 11, migraine gone and now just back to severe Right Sided Head Pain. (chronic/ongoing since September 2010)

How is Right Side Head Pain connected to migraine? Same thing? Different?
Migraines date to 2007. Prior to that I practically never even really had headaches.

Trigeminal Neuralgia? Cluster Headache? Seems like those plus Intractable Migraine.

Progress Needed=

Are there any other ways to image that right side head? An MRA to look at blood vessels? The specific slice MRI the tech at Atlantic Diagnostics said they use to look for acoustic neuromas? Contrast enhanced CT scan?

I want to try pure oxygen. How do I get this?

Also, how about an antiepileptic? Maybe I should try Klonopin. May I get a new rx?

Here are symptoms= Severe Head pain. Also bottom of foot pain, chronic, can’t walk in mornings. Left knee pain, left lower leg pain/lumps. And Left Shoulder in Pain for 3+ weeks, feels like it will blow out. (It was right shoulder pain started in 2007 and is still in pain.) Sometimes upper right ab pain flares up.

How to make progress on diagnosis?
Have we ruled anything out?

And here is what happened today. She was wonderful as always. She wants to focus on trying to prevent the migraines that come with my female cycle.

She likes nortryptaline because she thinks I will respond well with a low dose and because it can help with myofascial pain.

But because I am still chicken to try the nortryptaline, due to those cardiac, suicide, and sun sensitivity side effects (and I don't tell her I am also evaluating it against the porphyria database and it ranks as a drug to only use as last resort, I don't mind if she thinks I am irrational but I don't want her to think I am totally pseudoscientific, since I am not actually diagnosed with porphyria.) Dr. Raab quickly and brilliantly says, "How about a compromise?"

And so she proposes we try this for the next month=use Klonopin premenstrually, starting about two days before, for about ten nights. (10 nights is a typical migraine nightmare time.) And supplement with the Imitrex.

If the Imitrex gives me hives, as it perhaps did the 4th time I took it (but I hope it was more coincidence and not caused by the med) then I can try the Maxalt that Dr. Ponti gave me a sample of.

I like this plan!

And my bp today was 124/84. That is about as good as it gets so I was very pleased.