[Hamncheese]

I want to save others from the devastation of these drugs. I took a nine day course of Prednisone in March. Although I felt wonderful while taking it, the after effects were horrible. The worst thing was that I became unable to listen to podcasts, the thing I had been using to occupy my days. I became a person who not only could not converse, but also could not occupy my mind with any activity in order to have any quality of life.

In May, I tried Topamax, thinking it would relieve my headaches with no risk. Wrong again. After 3 nightly doses at 12.5 mg each, I became nauseous, weak, and my headaches were much worse. I took the 4th pill, but when the headaches came back within 10 minutes, I gagged myself to vomit my dinner, hoping most of the Topamax would get out of my body. I have been off Topamax for 9 days and still have the more severe headaches.

In addition to all this, I tried a new wheel chair that my mother bought me to make travel possible back to her home in Virginia. After only 10 seconds, 10 feet of trying, I became nauseous and the nausea lasted 4 hours. The nausea returned the next morning, and the next, which is today.

Please be very cautious before taking either of these drugs. They have caused me great harm. I would be well on the road to recovery and instead I am at my lowest point in 2 years and 3 months of concussion history.

If anyone has experiences similar to mine, please let me know if you found anything to abate the symptoms.

Joe

[Hamncheese]

In full disclosure, this post and all posts by me are typed by my mother, since I cannot use the computer.

[EsthersDoll]

Hi Joe,

I'm sorry to hear that the Prednisone and Topomax caused you to be worse.

I tried Topomax and it was really awful - it may have caused nausea but what was worse for me was that it made me function worse cognitively than I was doing before taking it. I forgot more words and had more trouble speaking and thinking while on it.

After I stopped taking it, it probably took about 4-6 weeks to stop affecting me so drastically.

I'm sorry to report I don't think anything can really help you to abate the symptoms - I do remember trying to get it out of my system at the time too - I felt like it was poisoning me. I drank green drinks and took epsom salt baths to try to cleanse my body - like a detox regimen. I was under the care of a very good acupuncturist who recommended a recipe for detoxing and he made house calls. If you would like, I can PM you his contact information - he is located on the West Side.

After I finally got over having it in my system I felt MUCH better and I'm hopeful that you will too.

You have to be careful with ALL medications now. I saw a psychiatrist who told me that tbi patients are VERY sensitive to medications; I think it's because of the brain chemistry that is trying to find equilibrium after being thrown out of it. My neuro wasn't aware or didn't consider this even though I had bad reaction after bad reaction to so many medications.

The biggest problem is that each and every tbi is so vastly different that one patient might do very well on a medication and the other might react very poorly to it.

And I think that a lot of neuro's like to throw drugs at a problem just to see if it works... they only see you once a month or every few months, so they are unaware of the severe discomfort and agony that theses mistrials cause.

I do recommend that if you suspect you are having trouble with a medication to figure out whether you need to titrate off of it instead of just stopping it cold turkey - because some meds can be problematic when you're taking them but quickly turn into a nightmarish, symptomatic-inducing situation if stopped cold turkey.

(I stopped several medications cold turkey that were supposed to be titrated down and it was not good.)

Anyway, there is also a great website called askapatient.com where you can read reviews about some medications that other patients have posted about it. askaptient has helped me to figure out that some symptoms I had were not just randomly occurring but were attributed to something I was taking.

[Socks]

Wow I'm sorry to hear you guys have had such bad reactions to Topamax. I take 125 mgs a day (of the generic Topiramate) and I do great with it. But then I've been on it for years for my migraines and probably am accustomed to its effects. The only time I've had a problem with it is when we increased the dose a little last summer. I had zero appetite. Had to force myself to eat. But otherwise Topamax has treated me well.

[postconcussion]

Hello Joe and Esthers Doll!

Yes, there is that point when the doctors just start to experiment with a lot of drugs. Topamax was very harmful to me as well. I also learned to stay away from steroids.

I think that in general our bodies are working so hard to get better and we know right away that some drugs will not help. Some people have no problems with drugs though! They are helped so much!

In general, I just learned that the doctors would get frustrated and I would try to be a good patient and take the meds but they would cause me a lot of setbacks.

In the end it is just time and rest and hope!

p.s. I would also drink this tea after each drug fail: http://www.amazon.com/Traditional-Me.../dp/B0009F3PHQ

Take care!

[LauraM]

I am now going to a headache clinic in hopes they can control my headaches better. I take 300 mg Topamax at night and 400mg B2 at lunch. It is helping some. I have not had much in the way of bad reaction to the medication other than running to the bathroom more often. But EVERYTHING does that to me and I am resistant to nearly all medications. I also have Imitrex I can inject for bad days but it only helps for about 2 hours and does upset my stomach for a little while.

Sorry it did not work for you Joe and I hope they find something for you soon. It is miserable living this way.

[ShellyK]

Joe,
I am so sorry that you had so much trouble with the medications. I have suffered from bad headaches and migraines since my concussion. I also am very sensitive to medications.
For nausea what helps me the most is chewing on a piece of ginger or drinking ginger tea.
For the headaches I would recommend that you read 15 Natural Remedies for Migraine Headaches by Jay S. Cohen.
Also, your doctor should give you something to take in case you do get a bad headache.
Acupuncture has helped me a lot, but you need to find a skilled acupuncturist who knows how to work with concussions or brain injuries.
I hope that you will find the help that you need.
ShellyK

[berkeleybrain]

I'm so sorry you are still suffering so. I'm almost at the 2 year mark and I can empathize at the long-term affects of pcs.

I had the reverse symptoms. I tried nortyptiline and felt foggy and had crazy side effects. I'm on topamax now for vertiguous migraines and am doing much better. Each patient is different, but it's important to fight for what works for you.

I agree with an earlier poster about being careful about titrating slowly on and off medications. Our brains are much more reactive to medicines. I get some of the rare side effects; not all but some.

I think there is a connection between food as being medicine as well.

I also did a big switch in diet-following some of the paleo diet and some chinese medicine philosophies. A lot of meat and vegetables (salmon, avocados, eggs)- very little grains and some fruit. IT's hard but I have noticed a big shift in my brain functioning.

Stopped gluten, sugar, and caffeine. I drink ginger and mint tea for nausea which has helped a lot. The stomach/spleen functioning seemed to be affected for me. Acupuncture is beneficial for neck pain and nausea.

Last for me is my vision-binocular is not working well and I get double vision after 20 minutes or so even with prism lenses and vision therapy. Who knows! Maybe there is something I can eat that will change this.

I hope you find some peace-

[Hamncheese]

[QUOTE=berkeleybrain;1071713]I also did a big switch in diet-following some of the paleo diet and some chinese medicine philosophies. A lot of meat and vegetables (salmon, avocados, eggs)- very little grains and some fruit. IT's hard but I have noticed a big shift in my brain functioning.

Stopped gluten, sugar, and caffeine. I drink ginger and mint tea for nausea which has helped a lot. The stomach/spleen functioning seemed to be affected for me. Acupuncture is beneficial for neck pain and nausea.[QUOTE=berkeleybrain;1071713]

How long have you been on the Paleo diet, Berkeley? And how long were you on it before you noticed a change in your condition? I was on the Wahl's Paleo diet for 3 weeks and then I began eating the Wahl's Paleo Plus Diet 2 months ago and do not see any effects yet. This takes the Paleo Diet another step by eliminating ALL grains, all dairy, and all legumes. I eat mostly grass-fed meat, wild caught fish and an array of vegetables. Only 1/2 cup berries a day, and 1/4 cup nuts. Seaweed and organ meats.

I am hoping this will eventually help me.

[berkeleybrain]

I've switched since experiencing rare side effects with noritryptiline at the beginning of March, so about 11 weeks now. I also did go on Topamax (sorry) so it's hard to tease out which is affecting what. I also went off all gluten/legumes.

I do eat a lot of salmon, eggs and avocados-not just the meat and organs of paleo (I know that paleo isn't so strict). I also do the vitamin regime that is outlined here by mark from idaho).

I do lemon water /apple vinegar /mint tea /ginger to aid nausea and help with tummy troubles. Nice wholesome honey to tea.

I am also strict about the sleep regime-ear plugs, eye mask, and melatonin. I think getting sleep has been extremely beneficial. This was my first priority.

Second was the headaches and migraines. (Topamax). I still have dull aches and headaches. I figures I can take the brain fog and all - it was the pain that was hard to deal with.

The book "Practical Paleo" by Diane Sanfilippo had a lot of explanation for different ailments and explanations that were helpful.

My best to you-