- CASE FILE
Stroke, Severe intractable headaches that affect vision and speech. She also has an Autoimmune deficiency, Spondylitis, and Fibromyalgia.
ABOUT THIS CASE FILE
My Wife had an incident last summer. She complained of pain in her neck and head. She has fought with headaches for the last 25 years so it wasn't out the norm but she said it was shooting pain going up the back of her head. Later that night, she was sitting in the rocking chair with our granddaughter, looked at me with a funny look, and called me the wrong name. I tried to talk to her and she just had a blank stare, unable to talk. Knowing the signs of Stroke, I rushed her to the emergency room. On the way there, she did start to talk but I could barely understand her. It was mumbled and she had a droop on the side of her mouth.
At the ER, doctors performed MRI and CT scans, but they didn't show anything. The Doctors were baffled. She could barely talk, lost 95% use of her left arm and leg, and could barely see out of her left eye. The Doctors gave her TPA to be safe and kept her for observation for a few days that turned into a week. They called it a Hemipelegic Migraine (Migraine that mimics a stroke) and let her go home with a walker and home physical therapy. She started to get some use of her arm and leg back and her speech started to come back.
After about 2 weeks, she was complaining of a severe headache and she started to lose her speech again. We took her back to the hospital for another week and again CT and MRI were clear, EEG was clear, and Spinal Tap was ok (pressure was 25 so high side or normal). They also tried an occipital nerve block, without success. They didn't know what was going on and sent her home with no answers.
That night, the severe head pain got worse and her mouth started twitching uncontrollably. We went back to the hospital and stayed another week. They did more testing and tried different medications to break the headache, but there were still no answers. The severe headache and speech problems continued. She was very weak at this point, still using a walker and having speech and vision problems. They were afraid she might catch something in the hospital due to her compromised immune system and sent her home (more on that later).
We followed up with a local Neurologist, who only upped her dose of Verapamil and told us to follow up in 3 months. For her vision trouble, we saw her Ophthalmologist and a Neuro-Ophthalmologist who, after several tests, was almost certain she had an Optic Nerve Stroke. While at Cleveland Clinic, they said they couldn't do much, but offered to have one of their Ophthalmologists take a look. He said he didn't see what the local Neuro-Ophthalmologist saw as an Optic Nerve Stroke. They also offered an infusion treatment that they use for people with chronic headaches.
A month later, the headache, speech, and vision trouble remained. We went to our appointment at the Cleveland Clinic's Infusion Center. After 4 days in Cleveland and 4 hours each day of a cocktail of various IV medications, my wife, after 2 and half months, finally got some relief. The infusions seemed to break the headache and returned her speech.
This lasted for about 6 weeks. During those 6 weeks, there were still a few occasions were her severe headache would return and she would start to talk funny and have vision trouble, but she would wake up the next day and be back to her “normal” headache. The headaches never go away, they just get less severe. At the 6 week mark, all the symptoms came back and wouldn't go away. We set up another appointment with Cleveland Clinic and had another round of infusions. Again, she had some relief and it brought her speech back to normal. This time it lasted almost 8 weeks. There were bumps in the road as before and the headache remained but was manageable.
We went back to Cleveland Clinic and this time we could only get enough time off for 3 days of infusions. The infusions didn’t work as well and we left Cleveland with her headache and speech only slightly improved. We were also told by Cleveland that we couldn’t keep coming back this often and they typically only do the infusions every 6 months. The pain went on for the weekend and finally we got her to a local hospital on Monday and they gave her some of the same medications that she received in Cleveland and a couple others that helped. She didn’t completely return to normal though over the course of the next few days she did end up getting relief.
Cleveland is not close. It’s expensive to travel and stay there, so we looked for a closer alternative as well as a doctor that would try to help figure out what is going on. We have found a Neurologist that specializes in Headaches and Facial pain and are starting to work with him. It’s only half the distance compared to Cleveland. It’s been another 8 weeks and the symptoms have returned. She’s been bouncing back and forth between talking normal and the slurred speech, her vision is very blurred, and headache is roaring. There is a Botox apt scheduled to see if that will help.
Outside of the Infusions, we have only found 1 medication that has shown any signs of helping and I had to find that myself and recommend it to the Doctor, Amitriptyline. It has seemed to help a small amount as a preventative. I believe that’s what’s keeping her bouncing back and forth from day to day.
There are other conditions that may or may not be related to all of the above. My wife is sick all the time. She has been in the hospital 6 times for 2-3 weeks each time with pneumonia. We are also seeing an Immunologist that believes that she has an Autoimmune disorder and is trying to figure out what it is, but thinks it could be an IGG deficiency. She was diagnosed early in life with a marker that can sometimes show an autoimmune disease called HLA-B27 positive. Her Rheumatologist thinks she has Ankylosing Spondylitis and Fibromyalgia, and her Nephrologist says she has Stage 3 Kidney Disease.
We been around the block and have not had much luck. We are not sure what to do or where to go. We have seen Neurologists, Pain Management, PM&R, an Orthopedic Spine doctor, Ophthalmologists, a Neuro-Ophthalmologist, an Immunologist, a Nephrologist, and a Rheumatologist. Her Primary Care Physician has not been helpful and I have had to manage her care, find doctors, and schedule appointments.
This show seems exactly what we are looking for, someone to organize her care and get her to the right people to get this figured out. I don’t feel like any of the doctors we have been to want to figure it out, they just toss her some meds and hope they help.