Tag: migraine

My 46th TIA, in other words, Friday

It was a Friday, February 15, 2019, I was just feeling a little off. I started to paint a portrait. I couldn’t get done with it fast enough. I did not have the patience for it. I felt fidgety and unfocused. I applied the first coat of two colors, then put my brush away. When I walked down the hall to the front of the house, all of a sudden my right side went limp and I fell against the wall. I leaned against the wall and continued to my chair. I decided to try to sort out the problem I was having getting my glucose test strips from the pharmacy. Medicare has instituted new rules aimed at limiting test strip use, because, you know, so many people are addicted to pricking their fingers. The local CVS had received my prescription on Tuesday. The doctor’s office had not written it in a way that complied with Medicare’s requirements. They did not bother to inform me or my doctor of this. I filled a drug prescription on Wednesday and asked about the strips. They told me to tell my doctor to reduce the number of test strips to 300, since 400 was more than three months’ supply. I test four times per day. I did so. I used my last test strip Thursday morning. I called CVS. I got put on hold for several minutes. I called back. Anna finally answered after a long hold. She wouldn’t let me speak to explain my conversation with my doctor’s office. She said, “It wouldn’t work. I’ll try it again.” Then she immediately put me on hold again. After a couple of minutes, she got back on the line and said, “We’re really slammed. It didn’t work.” Then she hung up as I was trying to ask: What didn’t work? I was exhausted enough by the ignorance for one day, so I didn’t call back again until Friday. On Friday, I got the real reason Medicare wouldn’t fill the prescription, even though it was now written properly. On my last prescription for test strips the doctor’s office had mistakenly directed me to test twice a day. I had mentioned that I test 4 times to the pharmacist and to my doctor. No one seemed to think this was a problem at the time. It turns out Medicare won’t refill the prescription until I exhaust the supply at 2 uses per day. CVS told me to call Medicare to get an exemption. I called Medicare, who informed me that they didn’t routinely give exemptions. I told them, up to now they had covered my strips for four times per day. They told me Congress changed it. (After all, we need to save a few dollars on test strips so we have more money for trillion dollar bombers that barely fly.) I called my doctor’s office again to have them write the presciption for what I could get. I called CVS again. I explained to Mary what I had one. She made disparaging remarks about Medicare. I told her that Medicare remained the most efficient healthcare delivery system in the country, with the highest customer satisfaction rating of any insurance company.. She made an absurd statement with no basis in reality: “Well, the last thing you want is government in charge of healthcare!”

That put me right over the edge. I mean, who is to be in charge, if not government? Who is to enforce malpractice law? How could there be malpractice law without government? Who would enforce insurance contracts, drug safety and quality of care? My mind was reeling! My body was already in an active stroke state when I called. I responded with a word I had never uttered aloud before. I said, “You must be an ignorant Trumpite!”

I regretted saying it as soon as I heard it. It was true, but it would do no good. She apparently hung up before I finished the sentence. I waited a couple of minutes, then I called back. Eleanor, the manager answered. She told me that I was not to do business with them anymore after I used that word. I said, “Excuse me. She was the one who brought politics into the discussion. Wait a minute. What word?” Eleanor said, “You called her a c_nt.”

I told her that I most certainly did not. I have never used that word in my life. Eleanor claimed that another employee heard me say it as well. I asked how that could be, since only Mary and I were on the phone. I told her what transpired, but that did not matter. None of Anna’s or Mary’s mistreatment of me or their nonsense or discourtesy made any difference. At CVS, the customer is now always wrong.

An hour or two later, Frank, my visiting nurse, came to check on me. He  ended up calling the ambulance and I was back to Grand View’s ER with stroke symptoms and extremely high blood pressure. They went over me and determined that I had another TIA. The doctor asked me if I thought that staying at the hospital would provide any benefit. I told him no. I thought it was a bad idea to come in the first place. He released me.

A month later I went into CVS to pick up a prescription for my wife after her surgery. The hospital had mistakenly sent it there instead of to the Giant Pharmacy next door. The pharmacist on duty had no problem giving it to me. Anna, a pharmacy clerk, started to go into a fit about how Eleanor told me I was not to be in the store; something Eleanor never told me. Anna proceeded to call the police, while the pharmacist hastily finished filling the order and ringing me out.

Bethann and I switched all of our prescriptions to mail order or to the Giant. Yet we still get texts from CVS for refill reminders. When I called them to tell them to stop that, they told me that came from corporate and they had no control. Yet, they originated from doing business with the local store. I told them they could figure it out. It was their problem. I did not want them bugging me. they harassed me, inconvenienced me, falsely accused me, called the cops on me, banned me from their store. they could figure out how to stop the texts, then they could go to hell.

Years ago, when I had an occasion to contact CVS “customer service” about a matter, I learned of their corporate policy of psychological warfare against customers. The phone tree on their published “Customer Service” line has no options to get to customer service. I even tried hitting 00 repeatedly to no avail. Finally, I screamed into the phone. That got me through to a bedraggled customer service agent. I told her what I had to do to get through to her. She said, “I know.”

I said, “You mean to tell me, that is the only way anyone can get through to you?”

She said, “Yes.”

I said, “You have a shit job.”

She said, “I know.”

April 2016

In the end of March into April of 2016, I had stroke-like symptoms for about a week. I was miserable. I kept on thinking it was just another complex migraine. I couldn’t sleep. I was hyper-alert at times. One side of my body was weak and didn’t work properly. I finally drove to Grand View Hospital’s ER on Monday, April 4. They took my vitals, extracted some blood, scolded me for driving myself to the ER, and for waiting through a week of stroke-like symptoms. They examined me and determined that it did appear that I was having a stroke. Then they proceeded to ignore me for five hours:  no food, no water, no vitals, no meds, no monitor. They told me I was going to be admitted. I finally caught an orderly who found a couple of sandwiches and some water for me. The kitchen was already closed. I ate the meat and cheese out of the sandwiches and threw away the bread. Part of migraine prevention is a low carb diet. All of my strokes and multiple TIAs (transient ischemic attacks or “mini-strokes”) have been caused by migraines.

I took my own drugs and supplements with the water. Finally, I got up to leave. I said in a loud voice that I would be more comfortable at home and they could call me when they were ready to admit me. A nurse immediately told me they were ready and scrambled to find a wheelchair and took me up to the telemetry unit on second floor. They kept me for five days and did every kind of heart test I have ever heard of, along with a CT scan and MRI of my brain with and without contrast. Of course, I was on a monitor the whole time. The brain scans showed no evidence of new stroke damage, so it was determined that it was another TIA, my 42nd.  Even though all of my strokes and TIAs have been migrainous, they did one last heart test, an echo-cardiogram. It revealed that my aortic valve was in bad shape. They found that it had been damaged by the infection that had attached to my spine in 2010. My cardiologist, who was doing the test, asked me why I didn’t know about this before. I said, “I’m not the one doing or reading the tests! How am I supposed to know anything?” He told me I would need to have it replaced. He didn’t think it was that urgent. He recommended I go to Lehigh Valley Hospital Center.

There are two reasons I would not go to Lehigh Valley. In 1993, when a truck hit me when I was on my Honda Helix, the ambulance took me to their ER. The doctor in charge that day happened to be a hand specialist. He kept looking at my hands to see what he could fix there. There were only minor scratches there. It was my hip that was shattered! They X-rayed my right hip, then had me stand up on it. I screamed in pain. They gave me crutches and another Percocet and told me to “buck up”. I hobbled out of the ER to ride home in excruciating pain in our compact car. I stayed on the couch that night. The next day, Lehigh Valley ER called me and asked me if I had pain in my hip. I said, “No shit, Sherlock!” They told me they had looked at the X-rays again and it looked fractured. They asked me to come back to the ER to get a scan. I asked why should I come back there and would I be seen immediately. They said they would take care of me and I would not have to wait. I arranged for a neighbor who had an old Lincoln to drive me up there, because I couldn’t bear folding myself into our Justy again. They made me wait all day long, lying on a gurney, in pain, in the ER, before they finally got around to me. Then they had the nerve to send a bill with a second ER charge! The other driver’s insurance was paying all of my expenses, but I would not sign off on that second ER charge! Lehigh Valley kept trying to bill for it. They finally called me and said, “What do you care? The other guy’s insurance is paying it.”

I replied, “Now, you really have me angry! You made a mistake, sent me home on a shattered hip socket on crutches. Told me to ‘Buck up’ ignoring my exquisite pain, and you want to get paid a bonus?! When my car mechanic screws up, and forgets to do something or damages something, he eats it. You don’t get to just get paid more for making a mistake! Do you want me to hire a lawyer and see where this goes, or do you want to just forget the second ER charge?” They removed the charge.

The second reason I didn’t want to go to Lehigh Valley was that I wanted to go to HUP, because my stroke specialist and neurologist were connected there. There is public transportation to Philadelphia. I have a lot of friends in Phila., and they have a long, national reputation for excellence in heart surgery.

When I was discharged from Grand View on April 8, as the nurse’s aide was helping me out the front door and into our car, my left side was numb and unresponsive. She was alarmed and questioned whether I should be leaving. She was concerned that I may be having a stroke. I assured her that they had done every possible test for that. I had been experiencing symptoms like this for about ten days. It is just an atypical migraine and they’re kicking me out.

I did not waste any time making an appointment at HUP.

Demonic Attack?

As I sit in our living room waiting for the sunrise, with the right side of my neck covered in steri-strips over just under my partially shorn beard, the still painful reminder of last week’s right carotid endarterectomy, my mind goes not to the ER visit that led to this particular knife fight, but to my first ever trip to an Emergency Room. I was four years old. I was playing in the sandbox, next to the garage, behind our little Dutch colonial on Shoreline Drive in Robbinsdale, Minnesota. My sister, Sue Ann, was swinging on the swing set, which our neighbor, “Grandpa” Olson had made for us. I ran right under the swing and the exposed end of a bolt on the bottom sliced my scalp, right in the middle of the top of my head. I stumbled, then got up, screaming, and ran, bleeding profusely, to our backdoor.

Grandma Ingham was visiting. She grabbed the beautiful afghan she had knit for us, wrapped me in it and scooped me up. I asked her why the afghan. She said it was to protect me against shock. I didn’t understand. It was the middle of summer. Why would I possibly need an afghan? I couldn’t believe she used this and risked it getting all bloody. At the same time, I felt honored and comforted: honored, that she was willing to spend something so precious, that represented so many hours of work, on me; comforted, because it was softer and less itchy than any of our blankets. My mom grabbed her keys, and sent Sue Ann, Alison and Tic over to the Ericsons. I rode in my Grandma’s arms to North Memorial Hospital’s emergency room in our brand new 1959 Pontiac station wagon. The doctor handed me a spool of black suture thread to play with, to distract me, while he stitched up my scalp. He must have used a bit of a local anesthetic, because I remember it just sort of tickled a little while he was working up there. Then we went home.

Thankfully, my blood washed out of that beautiful afghan.

Now, why does my mind go to this when I started out thinking about Sunday’s visiting nurse asking me, “Have you ever considered you may be under demonic attack?” while I was opening the three window shades on the southeast front of the house in the dark? I’m just three months shy of 64 and I can recall those scenes from 60 years ago as if they happened earlier today. Part of me is still that spastic, precocious four year old. And, the nurse asked that irrelevant question after I had already told her I was an atheist. I also explained that when I believed in God, I didn’t fear demons. “The only power they had were lies.” Twisted people were another matter. I didn’t fear them enough to modify my actions, but I received my share of threats. A Mennonite pastor threatened to kill me. The Fruit of Islam leader at Graterford Prison put out a hit on me at one point. A gang of street punks threatened me. A high ex-offender took me from my day job at gunpoint to drive him to a rehab. Bishops, priests and pastors of every stripe slandered me, lied to me, and bullied me. Police under four different mayors of Philadelphia harassed and threatened me. This was just part of my job of serving the poor.

Of course, she was talking about my health history: the mysterious infection on my spine, the vancomycin causing kidney failure, then Stevens-Johnsons Syndrome, the six strokes, the atypical migraines, the 47 TIAs, the damaged aortic valve, the allergy to 12 meds, etc. I don’t think it was demons. I think it was more likely that my shell was softened when I was a young eagle by the spraying of DDT over our house and yard to kill the mosquitoes in the swamp at the end of our backyard. Every day is Earth Day. See what I did there. That was a Rachel Carson reference. Does your brain work that way, or is it just me?

The sunrise was beautiful!

My Migraine Regimen

I have been asked on several occasions to share my migraine prevention and treatment regimen, so I decided a blog post would be the simplest way to do it. This way I can share it whenever it is needed without having to retype it each time.

The summer of 2011, I had no more than eight days without debilitating migraines. They causes three strokes that summer and multiple trips to the ER and three hospital stays. My summer culminated with being transferred to the Hospital of the University of Pennsylvania (HUP) in August for a cerebral angiogram. The heart surgeon was about to cut my chest open at Grand View, when another doctor intervened and said, “Let’s check one more thing.” I got an ambulance ride to HUP in Phila. The next day they did the angiogram. It was a grueling procedure. They saw something in my brain that they had never seen before. My adult arteries had never grown to feed my right occipital, parietal and temporal lobes. I have a single fetal artery from my spinal artery with three tiny branches off of it, one to feed each of those lobes.

I met with Dr. Scott Kasner, one of the top stroke specialists on the East Coast. He gave me a regimen to aggressively prevent migraines, since my developmental brain defect is inoperable. This regimen was developed by the Headache Center at Jefferson University Hospital, also in Philadelphia. We have made some changes since the original prescription, eventually eliminating any blood pressure medicine, as well as the Topamax (Topiramate), and adding 5mg/ daily of Atorvastatin. Where we started in 2011:

  • Lisinopril, 10mg daily
  • Topiramate, tapered up to 200mg twice a day
  • Aspirin, 81 mg daily
  • Ginger, 650mg twice daily
  • Denatured Butterbur, 175mg twice a day
  • Vitamin B2, 200mg twice daily
  • Vitamin C, 500mg twice daily
  • Magnesium, 300 to 500 mg, three times daily. (I found I absorbed Magnesium Citrate best, so lowered the dosage to 300mg)
  • CoQ10 100mg three times daily
  • Vitamin D3, 1000mg three times daily
  • Fish Oil capsules, 300mg Omega-3, twice daily

We learned that gluten and other inflammatories can increase the incidence of migraine. Also, a low carb diet can lead to a healthier brain, and help prevent migraine. After all, your brain is fat. I had an allergic reaction to Lisinopril, so we eliminated that.  After more than five years on Topiramate, I weaned myself off of that, with little increase in incidence of migraines. I take 2 ginger capsules at the onset of a migraine, followed by one every half-hour until the migraine is gone.

I also take homemade green tea capsules, morning and evening. These are not green tea extract. I believe herbs are more often best whole. I also take cinnamon morning and evening. Green tea and cinnamon fight inflammation and help regulate blood sugar. I also take turmeric with black pepper capsules. The black pepper helps activate turmeric , which is a powerful anti-inflammatory. I no longer take to Atorvastatin. I am back on Topiramate, although at a lower dose, after several TIAs this winter. I am now on 325mg aspirin due to my aortic valve replacement in June 2016.

Educating Doctors

Yesterday I saw my neurologist and my primary care doctor. I see the neurologist for my migraines. My migraines cause strokes, so it is imperative that we do all we can do to prevent them or to stop them if they start. I am not one to just blindly follow doctors’ orders. My dad was a medical malpractice defense attorney. I was raised to take responsibility for my  own health. My dad would regularly lecture us on how it was the medical profession’s fault that they were getting sued so badly, because they had been so arrogant for so long. They expected you to take their orders and prescriptions without question, as if they were gods. The problem was that created an expectation of infallibility. So honest mistakes and judgment calls now became malpractice with astronomical, punitive damages. That was the 1960s.

Needless to say, through the years my approach has raised the hackles on a few doctors. I simply explain to them my background and ask them if they would rather I trust them totally and implicitly, and if anything goes wrong, I will sue their pants off; or we can work as partners and friends. Yesterday demonstrated that I have stumbled upon some pretty amazing doctors. Of course, they have demonstrated this to me before this by their expertise and care. But yesterday they let me teach them.

At 11:30, I had my appointment with Dr. Cindy Wang, my neurologist. She is a delightful Chinese woman with a great sense of humor and a keen scientific mind. Computers frustrate her, though. (Of course, we all have days like that. I digress.) We had to cut back on the Verapamil, because I had started to react to it with hives. I had been up to 360mg morning and evening. I had tapered myself back to 90mg morning and evening. That took care of the hives, but the migraines came back. So we had increased the Topamax to 150mg morning and evening and inched the Verapamil back up to 180mg morning and evening with no ill effects. I still was having migraines more frequently than when on the higher dose of Verapamil. I wrote this just to give you some background.

We started the appointment with Cindy asking me how things are going. I told her that I had learned about ginger and had added it to my treatment routine and that it had helped tremendously.  I told her about the studies that had been done that had shown that it was as effective as Imitrex for stopping migraines and was not contraindicated in people who had had strokes, like Imitrex is. It is also effective at preventing migraines. One of the studies was from the NIH. It is a very useful anti-inflammatory. She asked me how I took it. I told her I took two 650mg capsules per day as prevention and two at the onset of a migraine instead of the Ketoralac. She asked me if that worked. I said I was having far fewer migraines and when I did they were much milder. Rarely did I have to resort to Percocet or Ketoralac to stop a migraine anymore. She said, “You don’t just eat the ginger root? That capsule is not as natural.” She told me I should cut it up and put it in hot water with some brown sugar like they did for her when she was a girl, when she had a cold. It’s very good for colds. I told her that I really didn’t need the sugar and I do use fresh ginger, as well, in my cooking, but it’s not very convenient, as a twice daily thing. When I have a migraine starting I need to get it quickly; no time for all that prep work. She made a face and said it really tasted bad anyway, and grinned.

Then I told her that since we reduced the Verapamil, I hadn’t needed to get more Synvisc shots in my knees; that, perhaps, it was causing more inflammation for longer than we were realizing, and aggravating my arthritis. I said the ginger should help with that. I told her that I had also started turmeric, which is an even more powerful anti-inflammatory. she was not at all familiar with turmeric. It is related to ginger. It is another root spice. It gives mustard its yellow color and it is a main ingredient in most curries. Since I had already brought up my knees, I told Dr. Wang (rhymes with bong) about how I had started to take turmeric to ease the pain and inflammation in my spine. I also informed her of the study that had been done that showed that just 150mg of turmeric  per day was more effective than 20mg of atorvastatin, Lipitor, in reducing bad cholesterol. She took notes and she thanked me. We moved on to the squeeze the fingers and tickle my feet part of the interview. We made sure my ‘script’s were all up to date. Then it was, “See you in four months.”

At 2:30pm, I saw Dr. Niccole Oswald, my primary care physician, concerning the excruciating, constant pain in my back that I have been experiencing since June.  I told her about the ginger and the studies. She was  very pleased to hear about that. She said she had a patient with heart disease that could not take Imitrex, so she did not have an effective way to treat her migraines. We discussed how to treat my back pain. The infection from October 2010 had eaten into my spine and damaged my vertebrae from T5 to T12. We don’t dare use steroid injections, since that could compromise my immune system and I am allergic to six classes of antibiotics. The choices were either a topical anesthetic cream or a topical patch. I then mentioned that I had been using turmeric to help manage the pain, since it is a good anti-inflammatory. I had started taking two 600mg capsules daily. She asked if it really helped. I told her that it took the edge off, but I was still hurting plenty. Then I broached the subject of stopping Lipitor. Atorvastatin has been known to increase the risk of type 2 diabetes (especially in women).  A couple of its common side effects are headache and back pain. So it seems like it would be a good thing to eliminate this drug from my system. She was very agreeable to that and seemed to understand the science behind it. She said it takes four weeks for Lipitor to get out of your system. So she ordered blood tests for Oct. 22 to see how we are doing. I guess it is “trust but verify.”  She also told me that turmeric is especially useful for treating arthritic psoriasis. We decided on the adhesive anesthetic patches. CVS just got them in this evening, so I will start using one tomorrow. Maybe I will be in less pain and less grumpy.

It was so refreshing to have doctors not only open to the idea of alternatives to pharmaceuticals, but pleased at the possibility and willing and happy to share it with others. I think maybe I should send them a bill for the seminar, though.