What symptoms in particular does Topamax treat? I have the headaches and joint and back pain to a whole new level of fun (which we all know far too well) but currently I am on zero medication as what my clueless GP first of all prescribed me to only take one a day when you are supposed to take 5 ... and I wonder why it wasn't working. But now on the full dose it doesn't do anything so Ive stopped taking it and it makes no difference. I am now wondering if there is anything I can ask for or suggest. Ive been given Mobic which is the anti-inflammatory which is just about as useful as Jaws going on a vegan diet, so any suggestions guys? Thanks for the help xx
There are many different preventatives, one off the top of my head is propranolol. Topomax did nothing for me either, and I took it for a year. Good luck. A neurologist may have better grasp on preventatives than gp.
It was designed as a seizure medication , but is used to treat headaches also. Many csn & pns medications are used for multi purposes and off label diagnoses.
I would recommend you see a pain specialist.
What is causing your joint & back pain? Have you had any diagnostics on your spine? Where exactly does your spine hurt and what does it feel like? Which joints are painful? Can you describe your headaches? Sorry for all the questions but each can have many causes?
The entire of my spine hurts, I have a 10cm syrinx between my sholder blades and scoliosis towards the bottom of my spine. I also have one leg shorter than the other so even with special insoles knees and hips hurt along with cramps in my legs. My headaches are the typical chiari headaches at the base of my head. All in all Drs have said no to surgery but then haven’t given me anything in regards to medication or even suggestions so not very helpful.
check out.EDS. my.daughter.complained about joint pain for years. she.was finally.diagnosed.with.EDS.
For me, medications are useless--well in a way worse than useless since they all come with side effects on their own. SO, I chose a more natural route of stretches and exercise which did help. I use balls and long squishy tubes to aid in support of my spine. Water exercise is good as well, but I have to be careful how I bend my head over long periods, so plain swimming isn't always good. I ALWAYS try a more natural route first. I do not want [insert horrible side effect here] if there is something I can do besides pop a pill. It's just me, but I seem to feel better when I do that. I also use multiple pillows on my bed to keep my neck and spine aligned as I sleep. Even Dr. Oz did a segment on that once, so I'm sure there are youtube videos and directions all over the internet. That helped immediately....by week's end I saw a difference. I now use 6 pillows every night minimum.....
In Dec 2012 I started 100 mg Topamax + 50 mg Nortriptyline. My head pain was severe. Within 2 months it came down to occasional head pain. My NL even said I will never be 100% pain free. We tried going off Nortrip. but it didnt work so went back on.
I’m just now needing a “tune-up” with the meds & hopefully that will happen on Monday when I see my NL
For me the pain relief outweighed the side effects; most side effects calmed down after approx. 2-3 months. Though I can’t tell you if mylack of memory is from meds, old age, or health issues.
Good luck.
Emily,
Topomax is one of those things that you have to triate, or work up to a maximum useful dosage. It is used for migraines, as a mood stabalizer and for neurological pain, similar to neuronton. Personally, I did not tolerate it AT ALL. At 50 mg I started drooling on myself and couldn't remember anything from more than 5 minutes ago. It worked great for the nerve pain for me at only 25 mg, but did nothing for the headaches. In fact, I think it made them worse. I am very sensitive to meds, so most of them give me nasty side effects before I reach a useful theraputic dose. Topamax seems to be one of those meds that either you love or you love to hate. This web site is pretty good at letting you see all the good and bad that goes along with most meds they give us for migraines.
http://www.crazymeds.us/pmwiki/pmwiki.php/Meds/Topamax
Hope that helps and you forgive my rotten spelling!
Shannon
Emily,
I have to agree with Shannon on topamax. I was hospitalized for six days after getting a spinal tap. Spinal taps are not fun if you have a Chiari. They were not aware I had one at the time. While in the hospital they tried to treat my sevre headaches with topamax. It did not really help the Chiari headaches at all for me abd the sude effects were really noticeable. I had decompression surgery in Dec 2012. That really has been the only thing that has helped. I also found laying down to help try and equalize the pressure to b helpful. Hang in there, I know the pain is tough! I’m sending good thoughts your way.
-Brandon
Topiramate worked will for me as long as it was given to me if I took it as 25mg x4. Now that I am taking it at 100mg in 1 pill I am having a little trouble adjusting to it. In fact the first few days it set off a massive headache for 3 days. Don't know why b/c its the same mg just lumped into 1 pill vs 4 little 25mg.
But, my massive headaches have reduced to 4xs a month vs EVERY day. But I am tired and I do have my moments of DOri every now and then but its not constant its mostly when I'm out in the sun. I find it humorous. When I can't find my words its also b/c I've been out in the sun and need to take a nap. I have also been losing weight and that helps b/c I need to. If I loose all my weight It will help with reducing the fluid that I have which causes so much pressure.
The meds did not work until a good 2 months after. Hope that helps! Everyone is different and has different tolerant levels.
I also had these kind of responses to both meds. I've tried them both 2 different, maybe even 3 times now and have felt some relief to my pains because I was super medicated. but it never lasted more than a day or so. but the negative side effects lasted longer than the relief. I hear from many people it is definitly a person to person situation on what symptoms and medications do and don't work. But these 2 seem to be the go to meds for those with Chiari or Chiari like symptoms.
IrishGirl said:
Emily,
Topomax is one of those things that you have to triate, or work up to a maximum useful dosage. It is used for migraines, as a mood stabalizer and for neurological pain, similar to neuronton. Personally, I did not tolerate it AT ALL. At 50 mg I started drooling on myself and couldn't remember anything from more than 5 minutes ago. It worked great for the nerve pain for me at only 25 mg, but did nothing for the headaches. In fact, I think it made them worse. I am very sensitive to meds, so most of them give me nasty side effects before I reach a useful theraputic dose. Topamax seems to be one of those meds that either you love or you love to hate. This web site is pretty good at letting you see all the good and bad that goes along with most meds they give us for migraines.
http://www.crazymeds.us/pmwiki/pmwiki.php/Meds/Topamax
Hope that helps and you forgive my rotten spelling!
Shannon
I agree with propranolol, but it is only good for the headaches. It does take a while to feel a difference. I went from frequent migraines to occasional migraines to frequent headaches to occasional ones. The good news though is that it is a very benign medicine with practically no side effects. It is actually a blood pressure medicine that has been found to be very useful for headaches.
I have had surgery 9 months ago and it has helped my symptoms are about 65%.If your 're not seeing a specialist you need to find one,there is no med. that will change the pressure on the brain.I searched for 28 years for answers and could not get any help except the meds given to me for sleep.In my case gabapinton,excuse my spelling,has been one of the best to help me sleep and deal with pain at night it causes tiredness but was prescribed for day use too which I opted to use it at night only.Please find a specialist,it’s the best solution,most Dr.s just don’t know enough about chiari I have tried them in all field, probably 20,and they don’t get it.Keep us posted hope you soon feel better.