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Traumatic Brain Injury and Post Concussion Syndrome For traumatic brain injury (TBI) and post concussion syndrome (PCS). |
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02-01-2012, 08:03 AM | #1 | |||
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Since my 30 mg of amitriptyline seems to have maxed out its effectiveness at headache prevention, my neurologist is gradually moving me over to Topamax instead. I'm tapering off the elavil while I taper up the Topamax.
Anybody tried this med? Better, worse, about the same compared to amitriptyline? He seemed optimistic about it since the Imitrex seems to help arrest the headaches when they are coming on.
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mTBI and PCS after sledding accident 1-17-2011 Was experiencing: Persistent headaches, fatigue, slowed cognitive functions, depression Symptoms exacerbated by being in a crowd, watching TV, driving, other miscellaneous stress & sensory overload Sciatica/piriformis syndrome with numbness & loss of reflex Largely recovered after participating in Nedley Depression Recovery Program March 2012: . Eowyn Rides Again: My Journey Back from Concussion . |
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"Thanks for this!" says: | Dmom3005 (02-02-2012) |
02-01-2012, 09:26 AM | #2 | ||
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My daughter (when she was 10, NO mTBI) took topamax for a year or so for migraines and had wonderful results.
Hope it works for you too!
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mother of 14 y/o son, Concussion from football 10-7-2011. current symptoms: still out of school, constant headache, migrating severe headaches, vision changes, startles easily, issues w/thermal regulation, delayed pain response, trouble sleeping, struggles for words/concepts/ideas, emotional about accepting what is, behavior issues esp when mentally fatigued. currently on no meds (except sinus meds and vitamins) and goes to vestibular therapy. |
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02-01-2012, 11:17 AM | #3 | ||
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My neuro tried topamax with me as well.
I had a horrible experience. I ended up going into the doctor's office, he took one look at me, put me in a wheelchair, and sentd me to the ER. It is a very powerful drug. I remember feeling lethargic, confused, extremely dizzy, etc. (couldn't really get out of bed) Also it is easy to draw a blank when speaking (this is a common side effect) and the weight loss is scary. If you are thin it can be too much. And you may have tingling in your extremities. My neuro said to drink gatorade throughout the day. For me, it was one of those drugs that made everything worse, but you never know. Just wanted to share my experience, I hope that you have a better one |
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"Thanks for this!" says: | Eowyn (02-01-2012) |
02-01-2012, 11:31 AM | #4 | ||
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I tried and did nothing for me. Luckily I didn't have any terrible side effects. Start with lowest dosage possible.
For me even Imitrex didn't do much. So you have better chances may be. Ibuprofen is the only thing works some what. My Neurologist wasn't too optimistic and was honest about it. One thing he asked is about Lexapro. I tried and not able to continue for more than few days bcuz it gave me terrible stomach pain and nausea. I even talked to some neurologist in John Hopkins who is doing a clinical trial with Lexapro on people with TBI.
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Happy days not so happy. Sad days not so sad. |
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02-01-2012, 01:22 PM | #5 | ||
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My neurologist prescribed me Topomax for a while - the stuff made me delusional and crazy. I felt much better after I stopped taking it. My family was *very* worried about my behavior while I was taking it and they were relieved once I started acting more myself after I stopped taking it. We didn't think a drug like that could cause side effects like that. But I'm very sensitive to medication.
I think it's definitely worth a try. I think most things are worth trying. Keep in mind (and remind your Dr.) that people recovering from mTBI don't always need the typical dosage for it to work because we tend to be very sensitive to drugs. |
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"Thanks for this!" says: | Eowyn (02-01-2012) |
02-02-2012, 05:54 PM | #6 | |||
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Never heard of this drug.
Hope everything works out for you.
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What happened: I was randomly assaulted from behind in June of 2011. I was knocked unconscious for an unknown amount of time (less than 30 minutes) and have no memory of the event. CT scan showed contusion and hematoma of the left frontal lobe. I spent 3 days in the hospital. Diagnosed with Post-Concussion Syndrome in September 2011. Currently have Medicaid, Medicare and SSI. Current symptoms: Brain fog, mild memory issues, problems with spontaneity, occasional spacing out, word finding difficulties, tinnitus in right ear and some other things that I can't explain. Life after the brain injury: 4 years after the injury, I'm engaged to my beautiful girlfriend of 5 years, I'm the CEO of my own business, Notorious Labs, I've taught myself how to program complex games and apps which is a feat I never thought I'd accomplish and now live a semi-normal life with very mild PCS symptoms. Slowly but surely regaining my life back. |
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02-02-2012, 10:04 PM | #7 | ||
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I have been on topamax, for a few years. It works very well for me.
I hope you have good luck with it. Donna |
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"Thanks for this!" says: | Eowyn (02-03-2012) |
02-04-2012, 12:20 PM | #8 | |||
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So far, I'm a few days into the transition. 20 mg of amitriptyline and 25 mg of topamax. I feel very sleepy and dizzy, similar to the way I felt when starting amitriptyline. Can't wake up. Go blank and dizzy every time I stand up.
On the bright side, no headaches. On the downside, I can't do anything that might possibly cause a headache. With the amitriptyline, this lasted a few days and then got better. Should I expect it to improve over time with topamax as well? Or am I stuck this way?
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mTBI and PCS after sledding accident 1-17-2011 Was experiencing: Persistent headaches, fatigue, slowed cognitive functions, depression Symptoms exacerbated by being in a crowd, watching TV, driving, other miscellaneous stress & sensory overload Sciatica/piriformis syndrome with numbness & loss of reflex Largely recovered after participating in Nedley Depression Recovery Program March 2012: . Eowyn Rides Again: My Journey Back from Concussion . |
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02-04-2012, 10:24 PM | #9 | |||
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I was on topamax for migraines a few times. You do get some weeeeird side effects. Depending on how you feel, weight loss might not be so bad, but others aren't pleasant. I stopped taking it the first time because my hair started falling out, lots of it. So, be aware that might happen, though not saying it will...that's one of the rarer side effects from my knowledge. You might find yourself not as hungry (weight loss), your hands and feet might get numb and tingly (keep hydrataed), and maybe the weirest one.....carbonated beverages will taste TOTALLY different! It's hard to explain how...metallic maybe. You'll notice it, I think that one is fairly common.
For me the drug was very helpful, and I can handle it on a low dose. Everyone is different so just keep your eye on the side effects. |
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"Thanks for this!" says: | Eowyn (02-05-2012) |
02-05-2012, 09:28 AM | #10 | ||
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I would just be hesitant if you are going to take this medication. I have been on both amitryptiline and topamax. At first the Topamax seemed to do wonders for me, and my headaches decreased substantially. However, it only worked for a short amount of time, and as they increased the dose I began experiencing the side effects. On the medication I had serious memory loss, and could not bring up words when I wanted to. You should keep a diary, if you start experiencing anything weird write down the first time it occurred (time, symptom, severity, and frequency). If it is bad immediately call your doctor.
I hope everything works out, and your headaches go away. Feel Better |
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"Thanks for this!" says: | Eowyn (02-05-2012), SpaceCadet (02-05-2012) |
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