That is not me, folks. I wouldn’t smoke cigarettes.

I am on another journey in hopes of dealing with and managing ocular migraine. There are a couple of things going on so I will fill you in and perhaps you will find some information meaningful and pertinent for you or someone you know.

In my quest to obliterate my migraines I have learned a good deal: they are not just headaches. They are unjust headaches which can manifest as:

• head pain (which, luckily I don’t deal with often and my lifelong headaches, since childhood, have diminished over the years from intolerable to manageable);
• migraine vertigo (the worst I have ever experienced but thankfully short-lived episodes);
• stomach migraine (yup, it visits and causes gut spasms);
• retinal migraine (a gold aura morphs into a red-black curtain that “drips” over the vision in one eye;
• aura/ocular migraine (my most common and frequent culprit, where both eyes perceive strange shapes and disturbances (this is a spasm in the occipital lobe of the brain)
• parallel-stroke symptoms (this got me to the ER and quick: inability to express, limbs going numb)

All this and more are part of the migraine festival. The symptoms can be brought on by excitement-both negative and positive, light, electronics, flashes & reflections, fatigue, stress. Probably just by living. It’s a neurological-genetic disorder. So far …

I have tried and still use many of the following:

• Gunnar’s glasses for the computer
• massage therapy
• acupuncture
• plasma/frequency healing
• blue-light-blocking computer screen shields
• breathing monitoring/meditation
• chiropractic
• The Muse device for meditation
• Bio feedback and neurofeedback: brain mapping
• Vitamin & herbal supplements upped to beyond the ante: D₃, Dolovent (magnesium with CoQ10) and Petadolex from Germany, B complex, on and on …
• Big Pharma drugs for seizures and brain stuff-no change
• An Antidepressant that made my eyes feel like they were bouncing, negative side-effects!
• Botox on my entire head and neck-no change
• Green light therapy-no change
• Cefaly machine to jolt the trigeminal nerve-no change
• I have been renting a sTMS machine, eNeura, for $750 for 3-month periods, twice, to electrically jolt the back of my head (just sent it back–try traveling or going out with that thing. It made no appreciable difference.)
  

  eNeura

• My latest effort is centered around a self-injectable pen, with a medication called AIMOVIG. I suppose it  is like an epi-pen. This new FDA approved drug was recently released. So far it is a $150/mo co-pay specifically meant for pain. I was trained in how to administer it by my headache specialist’s physician’s assistant. It was a bit daunting to know I have to stab myself in the thigh.

  

  The drug is shipped in a cold-packed container to the hospital pharmacy and they deliver it via courier. It has to be at room temp for 30 mins prior to administering.

  

  Cool, right? One poke, monitor the liquid level for 15 seconds and say. “Whew.”

  
  

 

So far I think I can say whatever “pain” headaches have been diminished in intensity to barely anything. It might take three months for the drug to fully take effect, but, pain is not the big issue, it is the visual disturbances which are way too frequent. Losing part of one’s vision for about 30 minutes is not conducive to driving. There is no warning.

About a year ago my health food guy told me about CBD oil and I bought a bottle. It is not cheap. CBD oil is from hemp and does not have an appreciable amount of THC, the stuff in cannabis that makes one high.

A friend began an on-line business and began selling CBD oil which was a bit stronger than the one I had tried. I learned I had to take it twice a day under my tongue. It has an organic-tobacco-ish kind of after taste.

 

So, I began to experiment. I took the Natural CBD drops twice daily and if I detected the possibility of an ocular episode, I took another dropper. I was able to modify about 5 episodes during the month within about 5 minutes, unlike the 30 mins., which now I know is kind of miraculous as it takes an hour to get into the system. BUT something seemed to be working.

Let me just say that about two years ago I had seen, on 60 Minutes, an American news-magazine on television, that little children who were suffering with epileptic seizures, whose lives were not lives, who had no normalcy, tried Charlotte’s Web CBD oil and the seizures were controlled. THIS is monumental. The families had to move to Colorado where it was legal to obtain the oil. So, I brought it up to my then neurologist, Botox-Man, who pooh-poohed me and kind of said that was a stupid idea. I wasn’t going to give up. I did, however, give up that “doctor.”

It was always in the back of my mind that this could be the answer, that there was a better, more natural way to address my situation. That the Native American Shamen knew what they were doing with what the Earth provides.

Now I was on a quest for full, medical marijuana which is legal in New York State.

How to get it:

One has to be certified for the need for medical marijuana and there are people out there who will do this after an interview, sometimes a Skype interview, and subsequently get the paperwork moving which leads to a temporary card and then a permanent card. One’s condition must be verified by a doctor. These people charge around $200 to do this.

There is a list of acceptable issues for which medical marijuana can be prescribed. This includes:  chronic pain, fibromyalgia, Crohn’s Disease, Parkinson’s Disease, cancer, anxiety, arthritis, PTSD, on and on! You can learn more about states’ laws here.

To make a long story short, I was about to book an appointment and see one of these certifiers when I found out that my physician had become a certifier: the stars lined up. He had interviewed the pharmacist at a local dispensary, was very impressed by her knowledge, and soon I had my card. Every patient he has certified has given positive feedback.

This is no slipshod operation. The dispensary is tightly run. You have to show your speak-easy ID to a camera at the door and have to be escorted through more doors to see the pharmacist. All it needed was a Yellow Brick Road. But, there was no wizard, just a brilliant young, well-trained pharmacist who listened to my symptoms and came up with a plan:

Oil, CBD/THC, a dropper-ful taken under the tongue twice daily. A pre-loaded vape pen to use if I felt an attack coming on. These are New York State-produced and I assume they are under strict regulation. They contain THC in specific proportion to the CBD.

I am still figuring things out. The vape-pen was alien to me and I would end up with a coughing fit, something that is not supposed to happen, but it takes time to adjust to. I was able to stem the tide of a few ocular episodes, but others slipped past me as I couldn’t get to the pen in time. And when traveling or in a public place, I didn’t want to pull out the pen in the middle of an art museum and start blowing steam … I ran to the ladies room but it was too late; I had a full-fledged, 30 minute event. Unfortunately, on the way home from vacation I had a quadruple event (oculars, one after the other, my hand went numb and limp like a fish, and eventually a vertigo event, though not as severe as the mega ones I get. I had oil in my system and vaped but to no avail). There were times I became very disconcerted, but I remind myself this is new territory and it will be largely trial and error in hopes of better management. This stuff is expensive but it is worth everything if it helps. I have already spent plenty to no avail.

The video below is eye-opening. I recently ordered Charlotte’s Web on-line and I am hoping it will be viable. You’ll learn more about it.

I am not alone. There are many people out there with health and other problems that this relatively new product could help. Please watch this video.

 

 

Addendum: at about 1:00 pm this afternoon I detected an oncoming ocular episode. I ran and got my vape pen and in a short time it resolved.

At 2:05 I detected another episode, perhaps ocular, perhaps retinal. Each one can vary. I vaped again. I want my brain to have what has been a habitual response to whatever is a trigger to lose the association, to make other pathways. It is 2:14 pm and I think the episode is resolving. I’ll be back to let you know…

2:21 pm: migraine symptoms have resolved!

At 10:30 pm my computer screen triggered another ocular. Happy to report that using the vape resolved it!

The series continues here.