Bone Pain From Topamax

attention patients taking TOPAMAX Is anyone out there having SEVERE BONE PAIN THROUGH-OUT THEIR LEGS AND OR CHEST?...that is ignored by doctors; who insist is is NOT is side effect from this drug? I AM NOT CRAZY, BUT VERY FRUSTRATED. I am been on TOPAMAX for migraine prevention (low dose of 25 MG) for two years. I started getting bi-lateral leg pain which I was able to tolerate. this was not muscle pain; rather DEEP BONE PAIN IN THE FRONT FROM TOP TO BOTTOM. TWO WEEKS AGO; MY NEUROLOGIST INCREASED DOSE TO 50MG. 'OMG'..MY BONE PAIN IS NOW EFFECTING MY LIFE AND KEEPING ME UP ALL NIGHT. I HAVE TAKEN NARCOTIC PAIN MEDS WITH NO RELIEF. I ENDED UP IN THE 'ER' WITH CHEST PAIN LASTING TWO DAYS. THEY TOLD ME IT WAS BONE PAIN AND NOT HEART RELATED. My doctor ordered blood work to check for other causes of my leg pain; however I suspect it will come back as normal. I am writing this a t 2am; for I can not sleep with this pain. Please share your feedback. Thanks.

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January of 2013 I started on Topamax for chronic headaches, and by March I had excruciating bone pain in my legs. I also started experiencing bone pain in my arms after a short period of time. It is almost a year later and the pain has only gotten worse. I had to quit my job because of this pain that is interfering with my daily life combined with the daily headache and chronic migraines. I have been to 5 doctors without a single ounce of help, they all blame it on inactivity but fail to understand that it wasn't inactive when the pain came on. I truly think Topamax may be to blame and I need help getting others who have experienced this to tell me about their experiences.

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you too? the doctors think i am nuts and say i my bone pain can NOT be from the Topamax..although even the literature with the drug lists bone pain as a SERIOUS SIDE EFFECT TO BE REPORTED. All the doctors did was order blood work to check for OTHER causes of my 'bone pain'. That was a dead end. My headaches are as bad as ever; as if i increase the Topamax; my leg pain is unbearable! When I stay on the MINIMUM DOSE , the bone pain is still present but i can deal with it. All the doctors say is They have "never heard of this" and It is "in my head". I have asked about an 'alternative' to the Topamax and they say this the best PROVEN treatment and will not try another drug..Both my neurologist and my primary care physician have discussed this. I just want to give up. headaches only come on in my sleep, so they are now typical migraines. Severe head pain is my alarm clock ; either in the middle of the night or just before dawn; 7 days a week. Botox helped twice, but not the third round. it may work for you & you can get off the Topamax. We can best 'observe' the way our bodies react to a drug. I too; never had severe leg pain until I started the Topamax.

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Hello, Sara and Sarah! How are you both doing?

Yes, pain has been reported as a side effect of this medication and it is listed in the detailed side effects that are available to medical professionals. The list includes chest pain, arthralgia and myalgia.

Unfortunately, doctors don't actually spend as much time studying medications as pharmacists and researchers do, so they are usually under informed on the side effect possibilities.

Is there anything else I can help with?

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I'm so thankful I've found this. I've been a nervous wreck and have convinced myself that I'm losing my mind and something is seriously wrong with me. Yes, anxiety has been a side effect since my dosage was upped. My bones in my chest and my upper back hurts. I'm also experiencing cramps.

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Yes, I am having severe bone pain in the front of my legs radiating from my ankles up to my pelvis. The pain is more severe in my pelvis. I'm on 25 my daily and started the Topimax 6 weeks ago for migraines. I stopped taking it 3 days ago and the pain has not subsided yet. It is definitely not muscle or joint pain. It's a deep pulling aching bone pain. No other health issues or meds other than migraines and topimax so I know it's the medication. Good luck.

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I have tried to take topamax twice for severe migraines . Both times I have had to stop due to SEVERE bone pain in my neck and skull( had craniotomy 10 years ago).The only new thing I've done is start the topamax again. I will NEVER take this drug again! Outside of nerve pain, this is the most terrible pain ever. It feels as if it is in the center of the bone,very deep. Only mad doses of Tylenol and narcotics and ice packs around the clock can help.this drug is dangerous! Be careful!

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I am on Topamax and have SEVERE BONE PAIN, it is all over, legs, arms, ribs.... I am weaning off of it, I will deal with migraines. This pain is crippling, as so are my migraines but I need another option!

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Hi there. I was just reading posts about Topamax and came across your response to a post. I was just taken off this drug because the hospital neurologist thought it would be okay to start me at 100 MG without titrating up slowly. I ended up in the ER a week later followed by a week long hospital stay because I lost my vision within seconds. I literally flipped on a light switch and I couldn't see. My new neuro opthamologist told me that that dose could've caused me to have permanent blindness in a matter of days. He pulled me off of it immediately, and my vision is still not 100%, but close. Another thing I learned about Topamax through my new neuro is that a vitamin D supplement should ALWAYS be taken to prevent bone problems. It is a known side effect that Topamax can deteriorate bones. Even the i**** hospital neuro that started me at 100 MG told me this. So please, look into vitamin D. I don't know if what you've already suffered can be corrected, but you can certainly prevent further damage. I'm not sure how much vitamin D either. I was taking 2000 MG, but I think you can buy up to 4,000 over the counter. Good luck to you!

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I have none pain I'm my hands and feet I did wonder if it was my tablets but I have been on them
For about 5 years ..... My doctor has told me I have fibromyalgia I do have Cfs the bone pain is not good and keeps me awake at night I was put on amatryptolin but only for 2 weeks

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I was on Topomax low dose years ago. Started having bone pain. He said that wasnt a side effect even though i found it listed on a website of side effects. It wasnt listed on all sites. He ordered blood work and came back normal. I stopped taking it. Years later i am on Trokendi xr. Although it has side effects the bone pain is not as bad. I take tumeric for the leg cramping and i am good. I can only handle 50mg and no more of the meds.

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Yes! My left arm feels like its a rotator cuff issue. The pain is excruciating when I reach. It hurts my bones down to myelbow. I was on Dopamax for about 2 months and been off about 1 month, no let up of this pain! Is the damage reversible from this with regard to the bone deterioration?

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I have been on topamax for a couple of years, l have suffered pain in the middle of my chest the bone constantly hurt but the dr says it come from coughing, I'm short of breath but the test says its not asthma then what could it be I take two different milligrams so now sames like everything is going wrong.

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Me too! I have been on Topamax for migraines for several years. I have also had bone pain in my chest and legs, especially at night. My NP did not know what could be causing the pains. It never occurred to me that my pains might be a side effect of Topamax. I have been gradually cutting back on Topamax (from 200 mg daily to 50 mg daily), and I noticed the pains became less severe. I checked on Google, and all of these replies sound just like what I've experienced. It makes me wonder how common this side effect is.

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I'm so glad I've found these posts. I've been diagnosed with chronic silent migraine and have been in a permenant silent migraine every second of every day for over a year now. After a long journey of tests / various referrals to different consultants ( as no one knew what was wrong with me) I finally ended up at neurology and started the 'journey of hell' aka trialing topiramate / topamax . I'm sure this drug works wonders for some but for me it has reduced my silent migraine symptoms and given me a shed load of worse side effects. I can honestly say my quality of life was far worse on this drug. The pain in my hands, arms, feet and legs is AWFUL. I'm hoping it's all down to the drug ( as it started 6 weeks in to taking the drug as the dose was increased. Pain also got worse and more frequent as the dose increased). Neuro have thankfully decided to reduce the dose and take me of topiramate / topamax so I'm hoping the pain will go. In the back of my mind I'm freaking out that I've got fibromyalgia! Wld be a very unfortunate coincidence if I did. I'm hopeful, through reading everyone's posts that my pain is caused by this horrid drug

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Ive only been on topomax a few days and my legs are KILLING ME!!! im calling my doctor in the morning.

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I stopped taking topamax I couldn't deal with the way it make me feel I feel better without my bones do hurt I guess its because I have been taking it for a long time.

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Drug induced SJOGRENS....stop taking ....happened to me and far WORSE. look up the autoimmune disorder....

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I experienced the exact same result. Doctors said it was fibromyalgia and I realized what it really was when I was taken off the Topiramax.

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I never had problems until I took this medication for obesity.....bad choice! Now I had trouble swallowing, joint pains, headaches and horrible nausea and sensitivity to smell....OMG!!!! With this, I looked up dry esophagus and BINGO......Sjogrens disease! Since then I went to a rheumatologist after an endocopy of my esoph and he diagnosed me with polyarthritis AND fibromyalgia, and currently took much blood to test for the SSA SSB autoimmune signals for Sjogrens which can lead to lymphoma. TO ALL THOSE READING THIS!!!! GET OFF THIS TOPAMAX NOW!!!!

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I started topamax for migraines. I'm on .50 & now have extreme bone pain. Soreness going into stiffness in knee muscle from bone & elbow too. I know my dr will say no relation but so glad I've found these conversations.

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I took it for three days. I had the worse Charlie horses, that would wake me, and hurt the next day. It was freaky, I’ve heard of cramps in the calves of your legs.....but the front is horrible. I will never take it again. My doctors actually put it as an allergy in my records.

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Re: Sarah (# 1)

Sarah when I was started on topamax years ago by a neurologist for migraines after just a few days I started getting severe one pain in both knees. I reported this to the Dr and was told this was not a side effect, he then increased my dosage for migraines...I got a different Dr but got the same response from every Dr, I stopped taking it in my own, a couple of weeks ago I ran out of all of my other medications for migraines and had to take my topamax as a last resort, I can now barely move, I cannot lift my arms and every other joint in my body is in excruciating pain but mostly my shoulders are basically locked I cannot lift them. This all happened after I started taking topamax again. And I have found studies that say bone and joint pain and such is a severe side effect of topamax ??

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Re: Usernameisthisbecauseeverythingelseistaken (# 11)

I am having the same exact issue. I am on Topamax for the second time and this time around the arm pain is horrible. The migraines are easier to deal with (and I never thought I would say that).

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I have now weaned myself off Topamax completely. I still take a beta blocker as a migraine preventative. The bone pains I had previously in my chest and legs are now completely gone. I still get migraines but not significantly worse than when I was on Topamax.

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Re: Sarah (# 1)

I have been taking 50 to 100 mg of Topamax for stress daily. My right shoulder and forearm ache constantly and it seems to be bone pain. The pain wakes me up at night. Im reducing my Topamax.

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2017 started on topiramate(Topamax) 50mg dosage for me in arms n front of legs. disappointing, really helps headaches but im not sure in can handle the swap 1 pain for another???

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I have bone pain in my ribs and below my ribs. Pain in my left side below my heart. Chest pain. Heart pain and chest pain. Dizzyness. Lightheadedness. Terrible drug. Worked for about three months then caused nystagmus. Eyes moving right to left. That was why I was taking them anyway!!! For vestibular migraines.

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Yes this did the same thing to me, (the topamax). You r not imagining this!!! I can not take any of these because of the pain of bones and else where. The higher dose only made it worse. My doctor understood and took me right off them when I went back. I was taking 25 and 150 mg of differant ones.to me it's not worth all the side effects.

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Re: Linda (# 23)
Yes, the way you describe your shoulder and chest pain sounds just like the pain that I have at times. I am trying again to decrease my Topomax dose, but I also get three-day migraines. I'm not sure how much the Topomax helps with the migraines, but I agree that these bone pains can't be good.

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Re: Carol (# 13)

Carol, I am on topamax and every since I have such bad sharp fire like excruciating pains started in my back color bone, then went to middle of chest then to outer shoulder , then to shoulder socket, then front of chest, then the pain was so bad I went to a doctor which did not help. Then it went yo my tar, and now up my neck, I pray it don't ho to my head with the bad 3 to 4 day migraines. It has not yet thank God! This pain will take your breath away. If I even move, chew gum, cough, or breath!!! It is only getting worse by the day. I have to get off the topamax 25 mg. I can't take these kind of seizure meds. I have bipolar, not seizures, but they help some a lot. And I loved I lost weight, but I can't breath!!It says right on the side effects from krogers that they can hurt your bones. Don't wait if they do, go straight to doctor. It's unbearable!! I don't wish it on anyone.

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