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Established April 15, 1995
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3 February 2009
A Brief History
I survived and recovered completely from a brain bleed, August 5, 2008. Specifically it was a solitary aneurysm at the basilar tip in the subarachnoid layer. The general term given was "subarachnoid hemorrhage or SAH. It was coiled that day by an interventional radiologist at Hartford Hospital, CT. I was in ICU for four days and in a narcotic sleep most of that time. I spent another four days in the brain ward of Hartford Hospital. My early dreams were spectacular light shows and creative masterpieces. Some of them were simple drudgery, performing the same task over and over.in one it was like sliding from one computer map view to the next area- over and over again. (Narcotics or brain self-repair?) I was seldom alert and free of headache and was unable to read or socialize. Delodid induced fitful sleep and I'd awake in pain before it was time for another dose. Another med would be a fill-in. I had no appetite but had to consume some crackers and ginger ale with each dose. Nausea was a side-effect.
After a month of terrible headaches (see descriptions and helps below) I was back to normal activity. For weeks after that I found I avoided bending low at the waist or sleeping on my stomach. My head warned against both.
Now in February of 2009, six months passed, I feel fully recovered, the fatigue is gone. I still notice some minor word and fact search issues ( a little like going around the block to retrieve something that used to be next door) a micro-delay only but new to me. Since and still, I have vision trouble; the TV across the room appears blurry. This has not improved with time and I will soon get my first pair of prescription eyeglasses. (The eye doctor says it is more likely to be my age and the period of dis-use while in hospital and recovery that triggered deterioration that typically comes gradually with age- and not caused by brain injury. I'm told I am among the lucky 3% of people with this "uncommon" sort of bleed, an SAH, to have survived it and had no major disability. I was very fortunate indeed to awaken during the bleed, recognize signs of stroke, be been able to call for help, get help quickly and have the coiling available to me that day in a nearby hospital with a dedicated head trauma ward. At the time of the emergency, however, I knew I was likely on my way out. I communicated that fact to my family in rare lucid moments and told them that I felt pleasantly at peace about the journey. The ensuing headaches caused me to wish I had been allowed to go and to say as much. Oh, the headaches were awful-as all of you know too well.
Insights and Advice
You and your family must be willing to fight for your best interests. Medical personnel may miss things.
Speak up and speak often. Get information wherever you can. Although I dutifully obeyed orders and urinated into the "hat" at the hospital after my days in ICU, the staff failed to record the amounts on my chart and so no one noticed I was urinating 20 oz at a time and descending into dangerous territory. Only on day seven, was the meningitis-like headache due to blood in my spinal cord diagnosed when an astute physician's assistant came and found me curled up on my side in misery with a cold, wet towel covering my head, He had me treated with steroids, salt pills and fluid restriction. It was a miracle cure. I was able to read and to talk with my roommate for the first time in a week - at least until fatigue set in. At home, unable to reach my doctor by phone, I turned to the internet. Where the pros didn't research the interactions of my meds, Drugs.com identified a dangerous interaction (Keppra and another drug) that was causing neuropathy and serious neurological problems. When a search directed me to your site, I was able to ask about possible med interactions, neuropathy, types of headaches and when one could expect them to go away. Susan was helpful and reassuring when I needed it most.
Don't go home too soon and don't go home without clear instructions on whom to call if you have questions.
I'd been offered the chance to go home the day after the spinal-headache was eased. As the day progressed and the surgeon was unable to see me and complete the discharge papers, I was told I could stay or go as I wished. I was feeling so much better on the steroid and salt treatment and was impatient to get home. The surgeon never got to me, but he signed the discharge papers. I was given prescriptions for a down-dose pack of steroids and lots of meds but no instructions to continue salt tabs or to measure my urine and no emergency number to call, an oversight by the physician for which he later apologized. Next day, the meningitis symptoms returned. My surgeon was out of town and his staff too. I could get no help there. The hospital floor no longer had my records at hand. I was left to do the best I could on my own. I measured my urine, limited my intake and ate all the salty foods I could find until the headache went away. My husband went in search of salt tabs. I had questions about my three distinct kinds of headache. I had questions about increasingly serious episodes of neuropathy (my feet would become terrible hot or cold or numb). I wondered about drug interactions. A few more days in hospital might have avoided all this.
If you do find yourself cut-off from the surgeon's office, turn to your GP for help.
With the attentive help of my GP and good journaling and monitoring, we managed the salt/urine/endocrine trouble, monitored my newly high blood pressure and found ways to get through the various headaches until, after a full month, they were gone. Ahhh.
Prescribed meds may be a problem or may interact with something you are taking regularly. The doctors might miss this as they did with me.
I found Drugs.com on line, entered all the drugs and amounts I was taking and a report was made, identifying a dangerous interaction between Keppra, an anti-seizure drug and another prescription which I was on regularly. The doctors know I was on the other drug, had it given to me daily in the hospital but never researched possible interactions. It was not until I was told I could stop taking the Keppra that the worrisome, sleep-depriving neuropathy symptoms-numbness, bitterly cold and painfully hot feet- went away.
A tendency to some aneurysms can be inherited.
When I heard my diagnosis, that I had had subarachnoid hemorrhage, I remembered that that was the cause of death on my mother's death certificate. She was a healthy and active 95 year old when she complained of a terrible headache and died thirteen hours later. It had been a massive hemorrhage in the subarachnoid layer (SAH). My surgeon suggested that our first degree relatives alert their doctors and at some point get MRAs to check for a possible familial problem.
Three or four kinds of headaches became apparent.
One was spinal and required medical intervention; one just took time and was a clear reminder that I was overdoing and should stop and rest; the last, like a miserable morning hangover was eased a bit by breakfast and coffee but in the end had to fade away in time and intensity over the month of healing. I describe them in detail below.
Three Distinct Headaches Described
There was the headache that seems to be due to the coiling and blood to be re-absorbed and the physical invasion into my neck and skull.
This headache diminished with time and after a month was gone. This was physical pain in the area of the aneurysm. I felt pain behind my left brow, left neck, left eye socket, and had severe left earache requiring a hot pack to sooth, also sore throat localized to a small point at the back left corner of my throat near the Eustachian tube and on the nearby spot on my left rear tongue, and general pain on that left area of my neck and head. It would come on to remind me I was trying to do too much.:"Go rest!". a good reminder as over the month of recovery I had growing periods of time where I felt pretty good and energetic.
There was the spinal headache with shooting pains in my back and down my legs and pain bending my neck.
All I could do for any relief was cover my head and eyes with a cold towel and avoid any movement, noise, speaking or light. On my sixth day in the hospital, that headache was singled out by a PA visiting from neuro-science. He saw my position and recognized the signs of blood having invaded my spinal column. That triggers a hormone to flush the body out. I was urinating huge amounts of fluid into the measuring "hat" but it appeared no one was recording the amounts because the hat was never emptied. (No one had told me why I was to collect urine and I assumed more urine was a good sign.) Steroids and salt tabs are the treatment for that. I finally felt good. I could read for a while, talk. What a relief. That headache signals blood in the spinal column. Don't let the staff miss that.
At home again, there was the headache (related to the spinal one above and the one below both) that appeared the morning after my discharge, home without the salt tabs. I urinated a huge amount first thing, had this hangover like headache that involved a stiff neck, sensitivity to light and sound, nausea, pressure in the skull, ringing in the ears, a kind of a sludge- in-the-head feeling, slow-moving. Recognizing the signs of salt depletion, I went searching for coffee and salt. No tabs had been prescribed for home use and I was surprised to discover that it's very hard to eat enough salty snacks to equal 1 tsp. of table salt four or six times a day! That's when I began to keep records of my liquid intake and output, how I was feeling and so on.
Finished with all my meds and salt and urine issues now in balance, I would still wake up with the hangover or migraine sort of headache each morning. It is somewhat like the headache I had when my salt became dangerously low. These seemed to last a bit less long each day- generally. Coffee and breakfast helped. Later in the day, I felt better, but the sludge seemed to lurk behind the scenes, just hinting it's there when I changed position too quickly. These headaches are reminiscent of the sort of "allergy" headaches I had fairly often when I was busiest in my 40's (my mother had these too and she died of a massive SAH !!!) More recently, and having stopped drinking milk, I've had that "allergy" headache infrequently. I always followed my mother's advice to take a Coricidin- chlorpheniramine, an antihistamine with Tylenol- at the first hint of a coming headache and stop it's developing into an incapacitating migraine. A cup of coffee was also helpful. The headache I experienced four weeks ago in bed with the bleeding aneurysm was like those "allergy" headaches, a bit worse; I remember thinking of getting up to take a Coricidin but being restrained somehow. I'd like to know what connection, if any, there was between my mother's and my occasional headaches and our SAHs.
Deborah's Mother's Narrative: Marguerite
© Copyright 2009 Deborah Nye Corgan
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