As I mentioned to register myself in this group, I’m from Portugal, and my english is very bad. With the help of translator’s help, I can express and communicate without problem.
My name is Susana Penedos. I’m 30 years old and suffer from hemiplegic migraine since age 18. The diagnosis of the disease is only now being completed. I also have fibromyalgia.
My life has not been easy, especially the professional level. I worked as an assistant pharmacy, had a store and now I’m unemployed. I think I will start work in April; we’ll see how it goes …
When I started having seizures, no one could explain what was happening to me. I cried desperately and I asked my parents that they called the ambulance because I thought I was having a stroke. I felt my right hand to get heavy, then felt a tingling and needles go up my arm and face and then went to the leg and the whole right side of my body. My tongue was stuck, numb face, I could not say a word, I was completely confused, and I could not think. My vision was blurred, especially on the right side; when I looked in the mirror, I could only see half of my face.
I stayed there several minutes in the emergency room of the hospital and doctors said I was having a panic attack and anxiety and gave me sedatives and anxiolytics. For a long time, I have been considered a hypochondriac and anxious patient. Obviously I live obsessed with fear of having a stroke, especially now that I have a baby.
I’ve had so many attacks that my brain is getting weaker, I have no memory or concentration, and the right side of my body does not have the same strength and sensitivity that it had before. My headache is always on the left side, very strong and throbbing and attacks are always on the right. I also have migraines with tension. My migraines get worse when my stomach, liver or gall are not well.
I’m waiting for the result of genetic familial hemiplegic migraine.
I’ve been married almost five years. My husband is very understanding but the disease affects my life because I have no provision for anything. I’m always sick, tired, sad, and depressed.
When I decided to have a baby, my neurologist said that migraines improve with pregnancy due to hormones. The truth is that the first few months went better than I expected. In the middle of the seventh month, the complications began. The blood pressure was very high, I was with pre eclampsia, proteinuria, Hepatic changes, edema, poor circulation, many headaches, and my legs were so swollen I could not walk.
With 38 weeks of pregnancy I had a migraine attack and was hospitalized. The baby was fine, but my blood pressure was too high. Symptoms of migraine were the same as I used to have but much more intense. I was more confused. I was paralyzed and numb longer than usual, but recovered the next day. Of course it took some time to get back to normal, it is always after the crisis, and I’m sure you are always marks because every time I have less strength in my arm.
Anyway, I talked to my doctor and decided to induce delivery at 38 weeks and 6 days. We thought it would be a normal delivery but I could not dilated, after a day and one night my daughter was born by cesarean. She was 3760kg to 50 cm huge (I’m little but the father is 1.90 m). She was born perfect. Would I go through it all again? Absolutely.
After my pregnancy, I had to recover from a huge anemia and was taking medication for high blood pressure because it was too high. During pregnancy stopped taking medication, I am currently taking Topamax and Diazepam every day. In SOS take Metamizol.
I really liked to have another life. Quality of life. Unable to bear the light.
I feel a great sadness and especially a huge misunderstanding, I just no longer have friends.
I get tired of being seen as an insane person.