I have used the Imitrex the neuro gave me for migraine headache some, and have found that when I wake after taking a dose, half or full, I am extremely stiff all over. It is very painful to ‘unfold’ after taking this medicine, though it does relieve the more severe headaches. I try to take this rarely.
I have lost more than 20 pounds since my LP on May 31st. My appetite is less than half what it was before I started taking the Topamax. I’m now up to 100 mg/day. I am experiencing frequent nausea since starting the Topamax, though I have only ‘gotten sick’ once, the day I went to the E.R. I am extremely weak and dizzy-headed since starting the Topamax, especially if I stand up too fast. I understand that it will take some time to get used to this medication and that it will take time to get to the right dosage, but I am barely well enough to work, and can do nothing at home but rest on the couch.
My convulsion spells are almost completely gone. The meds for that are working. It also helps me sleep through the night despite the headaches.
My jaws are very sore all the time, like I have been clenching something in them constantly. I suspect possibly just an extension of the pain and pressure in my skull…? My neck and shoulders are in knots. I have to try to keep my body relaxed and in alignment and not turn my head or shift my eyes too far to either side or it causes a ‘wave’ of pain that takes some time to recover from.
In the past I have had experience with “Brain Zaps” when stopping or changing depression medication. However, no change has been made to dosage and I have recently started having these “Zaps” When I rise from a sitting or lying position, and especially when I awake. After a bit it passes, and I have had them before and am able to cope, but I would certainly prefer not having them. Before my LP, my headaches were daily but not constant; painful but not severe. Now they last nearly 24 hours. I go to bed with one and wake with one and keep it all day. The headaches are far more severe than they were before the LP, and before starting the Topamax.
My eyes are now extremely sensitive to light. I have had to ask my supervisor to change the lighting in my office to accommodate. Some days I have to wear sunglasses all day and all night. Sometimes I have to go into our storeroom at work with the lights out where it is pitch black to get relief. My vision is blurry with or without my glasses, and seems to be worsening. I have made an appointment with my eye doctor to check on my vision issues.
I’ve been doing some reading and have actually been tossing around an idea that I might still have a spinal headache from the spinal tap I had on May 31st. The symptoms of a spinal tap are: the worst headache you’ve ever had; extreme sensitivity to light and sound; nausea; visual changes; worse when sitting or standing, better when lying down; neck stiffness; dizziness. The only hang-up is the duration. The standard medical sites all say that the spinal headaches last only about 7 days max. First my neuro said I was having a spinal headache, and then he said it was migraine. Then when I mentioned that it could be from the spinal, he said no way. he said it had to be from the increased pressure in my skull. I am going to a new neurologist a.s.a.p. Sending all my records to one in Little Rock that came highly recommended. We’ll see how that turns out.
I sometimes feel as if I am imagining myself into worse shape, but I can’t fake how bad I feel. The worst part about all of this is that I didn’t go to the neurologist for headaches. I went to him for muscle convulsions in my left jaw, left leg and abdomen. That problem was easily solved. The headaches were a secondary issue.
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