[Marlin007]

Hello all. I have been run around in circles from one doctor to another going from my Primary--> Physiatrist--> Neurologist--> Now to Physical Therapy looking to get a handle on excruciating daily headaches I get. The Neurologist and Physiatrist says they are Tension headaches caused by myofascial pain as well as anxiety, stress, depression etc. I not only do not suffer from neither anxiety or depression and aside from the chronic pain have a great life and have since learned that tension headaches are actually caused by the same mechanism as migraines and not by tense muscles or stress like these 2 doctors seem to think. For the past 2 years I had taken opioids for the headaches and back pain but I became tolerant to them and they stopped working as effectively so I stopped in December. The problem is that now I cannot find anything non narcotic that even takes the edge off the pain so I am miserable. I have been given Lyrica, Bacoflen, Nortryptiline, Tramadol and now they want to try Cymbalta. Now I have nothing against anti depressants for those that need them but to keep being given them on the off chance they will work for chronic headaches is really messing me up. There have been no benefits and numerous bad side effects like tremors, hand twitches, chest pains and feeling disoriented/foggy. To placate my Doctors I have tried several AD's for their off label use for helping chronic pain and all, whether SSRI's, SNRI's or tri cyclics have all given me bad side effects. The doctor's response, well you are in pain because you are depressed.. Um no, I am getting a little depressed because I am always in pain..
So it has been going on three months now where they keep saying "Try this for a few weeks or so and we will see what happens" which really sucks because nothing good happens and meanwhile I am miserable. So my question to the many fine and experienced people in here: Has anyone tried Topomax or Depakote at all but more specifically on low doses to try and relieve chronic pain/headaches? I am very leery of trying these very strong meds but also am tired of suffering and want to be a complaint patient. I have a degree in Psychology though so am well aware of the mechanisms on how these medicines work, potential side effects and horror stories but do not have any first hand information so anyone who has tried these meds I would love to hear your stories both positive and negative before I go against my better judgment and try them... Thank you for any help it is greatly appreciated...

[Robert_325]

Originally Posted by Marlin007

Hello all. I have been run around in circles from one doctor to another going from my Primary--> Physiatrist--> Neurologist--> Now to Physical Therapy looking to get a handle on excruciating daily headaches I get. The Neurologist and Physiatrist says they are Tension headaches caused by myofascial pain as well as anxiety, stress, depression etc. I not only do not suffer from neither anxiety or depression and aside from the chronic pain have a great life and have since learned that tension headaches are actually caused by the same mechanism as migraines and not by tense muscles or stress like these 2 doctors seem to think. For the past 2 years I had taken opioids for the headaches and back pain but I became tolerant to them and they stopped working as effectively so I stopped in December. The problem is that now I cannot find anything non narcotic that even takes the edge off the pain so I am miserable. I have been given Lyrica, Bacoflen, Nortryptiline, Tramadol and now they want to try Cymbalta. Now I have nothing against anti depressants for those that need them but to keep being given them on the off chance they will work for chronic headaches is really messing me up. There have been no benefits and numerous bad side effects like tremors, hand twitches, chest pains and feeling disoriented/foggy. To placate my Doctors I have tried several AD's for their off label use for helping chronic pain and all, whether SSRI's, SNRI's or tri cyclics have all given me bad side effects. The doctor's response, well you are in pain because you are depressed.. Um no, I am getting a little depressed because I am always in pain..
So it has been going on three months now where they keep saying "Try this for a few weeks or so and we will see what happens" which really sucks because nothing good happens and meanwhile I am miserable. So my question to the many fine and experienced people in here: Has anyone tried Topomax or Depakote at all but more specifically on low doses to try and relieve chronic pain/headaches? I am very leery of trying these very strong meds but also am tired of suffering and want to be a complaint patient. I have a degree in Psychology though so am well aware of the mechanisms on how these medicines work, potential side effects and horror stories but do not have any first hand information so anyone who has tried these meds I would love to hear your stories both positive and negative before I go against my better judgment and try them... Thank you for any help it is greatly appreciated...

Hi Marlin .... I can't say anything from personal experience about the topomax but I was on Depakote for a while when I was in rehab and then following my release for some time. Some people do have some side effects with Depakote as with any medication but it might help your situation too. It also helped me as I had been previously taking lots of benzos so it helped with some of that anxiety as well as some of the headaches I having. It might be worth a try. At this point I don't see that you have anything to lose.

I don't like to go around recommending psych drugs on this forum. I think lots of drs over RX them. But they have a purpose and you have certainly tried lots of other things already. I would give it a shot if it were me. There gets to be a quality of life issue when we look at any questionable medication or off label uses. If you've got a quality dr and not some quack prescribing psych meds and I'm sure you have good drs I wouldn't be overly concerned about doing it. God bless buddy.

[Marlin007]

Originally Posted by Robert_325

Hi Marlin .... I can't say anything from personal experience about the topomax but I was on Depakote for a while when I was in rehab and then following my release for some time. Some people do have some side effects with Depakote as with any medication but it might help your situation too. It also helped me as I had been previously taking lots of benzos so it helped with some of that anxiety as well as some of the headaches I having. It might be worth a try. At this point I don't see that you have anything to lose.

I don't like to go around recommending psych drugs on this forum. I think lots of drs over RX them. But they have a purpose and you have certainly tried lots of other things already. I would give it a shot if it were me. There gets to be a quality of life issue when we look at any questionable medication or off label uses. If you've got a quality dr and not some quack prescribing psych meds and I'm sure you have good drs I wouldn't be overly concerned about doing it. God bless buddy.

Hello my friend, thank you for responding. I look at it like you in terms of you do not want to be messing with some serious meds like these, especially for an off label use that may or may not apply. The little research I have done has already turned up things like Topomax being called "Dopamax", "Stupamax" etc by former users and it seemed like almost 80% of the people reported having memory issues or not being able to recall certain things and felt like they lost some IQ points( this from this site where you can read reviews on the various meds). Lots of people reported and loving it about losing weight but there were commom issues of tingling in hands and feet, hair loss and trouble focusing. More importantly in my case with the diabetes there is the issue of hepatoxicity and renal problems as well as contra indications with oral diabetic meds that I take or may take in the future.

In regards to the depakote, I only know it for being prescribed to people with Bi Polar affective disorder, people with aggression issues and as a mood stabilizer. Again commom side effects were hepatoxicity/renal issues for long time usage, "zombie like" feeling, dehydration(problem where I live), vision issues and weak muscles.

So I am at exactly where you said, I have tried everything else and nothing has worked except the long acting opioids(tolerance issues though on the short acting ones). I ve tried all the migraine meds, non narcotic meds, off label AD uses and now Im looking at these very serious psych meds with serious side effects and asking myself if I really want to take the chances when most likely it will not work..
My PCP and I have become quite close and he is really a good doctor with my best interests at heart. He told me that after the neurologist tried a half assed effort at trying the lyrica again and yet another off label ad, this time cymbalta which I politely declined, the neurologist told him he didnt think he could help me. The PCP told me that the neurologist is usually much more ambitious but with me he gave up quickly. I think because he probably labeled me as a former opioid user looking to get back on. This despite it being my decision to stop taking the opiates and suffering nonstop for 3 months now.. If I were looking dont you think I wouldve asked 3 months ago instead of trying everything else under the sun instead...But no instead Im wrongly labeled/flagged whatever and instead its too bad keep suffering.. What a crock of shiz..

The thing with trying the depakote and dopamax,lol, is that you just cant stop taking it without wd's and fear of seizures. Of the 41 reviews roughly half liked it for helping rid them of their migraines(while most if not all reported strong side effects but said they would trade that to get rid of migs) while the other half hated it and couldnt stand the side effects.

My problem is that they cannot figure out what is exactly causing my headaches: the stenosis, DDD, myofascial problems, disc bulges, stiff neck and arthritis in facets and shoulder as well as spine or what. They do not present as normal migraines nor has the migraine meds like imitrex, relapax, fiorinal ever worked. Supposedly it is a tension headache but which I have now learned are actually migraines in nature, same mechanisms and not caused by stiff necks, backs or muscle pains. Those can trigger the headaches but not be the root cause.... So what now..lol Who the hell knows? I just know that I do not want to be trying these heavy duty meds when lesser ones like SSRI's and tri cyclics already mess me up with bad side effects.

My research has also shown that children of alcoholics(dad was one) have different chemistry and shown a propensity for liking opiates and then developing tolerance issues. My mom suffers from severe migraines all her life, the kind that knock her out for days at a time, yet is episodic whereas my headaches are continuous but only the severity varies. Never less than 7 and often a 10+ and take me out. Anyway take it easy and talk to you later..


Marlin

[sarahsandiego]

I am currently on 25mg of Topamax 2x a day. I was having bad migraines and used to take nocro and vicodin for these. Now I never have migraines and never take these meds. I can't say I'm cured, I get them often but it REALLY does work. Plus I've lost some weight which is an added bonus. It's a really good medicine.

[Tiff24]

I've taken Topomax as well for chronic migraines and it worked wonders for me. They had me on Topomax for prevention and Maxalt for when I actually got one and they completely got rid of my migraines. I don't have to take either anymore but they were really helpful when I did.

[tired2]

I suffered from Migraines since I was 17 . They can ruin your life . My vision would go blurry my arm and sometime my face would go numb ....whatever side I had the above I would get the headache on the opposite side .When I knew it was coming I would take my meds before the headache started .I also have tension headaches .

I took Depakote and got very ill . It is used for seizures ....I had a friend who's daughter had them for seizures she also got ill .

I was on anxiety med. vic's back then (which is when my problems started) . The pain meds stopped working so I took more and more ...my husband was worried I was going to OD I didn't care I just wanted to end the pain.

I know there is so much out there now ...but they say Depakote I run the other way.

I was told to take my meds before the headache started. I then took some Dramamine for the nausea , get an two ice packs (one on your neck the other where ever and find a quiet dark place and try to sleep. My son and daughter also suffer from them . Even though my son has migraines ,I almost think it's got something to do with our hormones every female I know strarted getting them after having kids.

Hope you find relief...
Good Luck and God Bless

[MomofKnN]

I suffer from chronic pain and Topamax has done wonders for me!! I was very very scared to try it and for years I refused to take any drugs besides for the pain pills that i knew worked. I don't have headaches though, just chronic back pain and fibromyalgia.

I LOVE Topamax! The only side effect I have is that I have lost weight (yay!). Not only does it help my pain but it has helped my mood too. I don't do well on anti depressants so I refuse to take them....but the Topamax seems to give me a mood boost as well. It has been a wonder drug for me!

[tatertub1]

Marlin,
I like you have daily chronic migraines. I take 6mg imitrex injections and yes I was on depakote for a few months to "break the cycle" of my headaches as they were progressing. It really helped me a lot. I gained a little weight, but for me that was an easy trade off. I had to go off the depakote so I could have children and recently started it again after 5 years, and it still works great for me. It couldn't hurt to try it for a while a see if there is any change in the frequency of yourheadaches. Good luck!!

~Tater~

[praetor]

I must say I cannot live without Topomax. I suffer from classic migraine and I have had as many as five in a day (I assume I've had 5- I had 5 separate auras alternating sides). I've been on Topomax for a few years now and the numbness and tingling was getting way too annoying. I read some one describe it as having their socks bunched up in their shoes - exactly! I also have no insurance and it's costing a small fortune. A few weeks ago I went off and replaced my treatment with corgard. I had seven migraines in five days requiring many pills, narcotic shots and lots of sleep. Needless to say I'm back on the Topomax. After that episode I'm going to say the side effects are a small price to pay for a normal life (or any life at all).

[dan18]

I was also getting very frequent headaches, which were usually migraines. My internest perscribed me Midrin and then Imitrex. Neither which seemed to help. I then went to get MRI's and CT scans done on my brain and my sinus's as I nothing showed up and I was put on topamax 25mg, twice daily. After a month that didnt help. My dosage was increase to 25mg in the morning and 50mg in the night and that slowly help but I was told I should go see a neurologoist who had me go for a CT scan and I had 2 bulging discs in my neck and had me going for Physical Therapy which did absolutly nothing but put me through pain and I recently started going to a chiropracter because going to physical therapy I started getting back pain. Turnes out that I had pinched nerves in my spine along with the bulging discs in my neck and after a week already feeling better and the headaches have decreased!!!

[praetor]

That's interesting. Where topamax does help me I still often wonder (after two brain MRIs and a CT scan) if it might just be something else. My father and brother have had multiple back surgeries.

[dan18]

Originally Posted by praetor

That's interesting. Where topamax does help me I still often wonder (after two brain MRIs and a CT scan) if it might just be something else. My father and brother have had multiple back surgeries.

praetor,

Have you gone to a neurologist yet? My neuroligst had thought I might have liquid in my neck, which thankfully cambe back negative, but the CT scan did show I have two bulging discs in my neck. My mom had a spinal fusion several years ago and back problems can be genetic. Might be worth looking into. Hope this helps.

Dan

[normajean210]

I am the ofice manager for a neurologist, which means I get all the medical questions since we dont use nurses. Topamax and Depakote both are used to treat seizures and migraines/daily chronic headaches. Migraines and seizures are very similar because they both are cause by the same roblem in the brain. We usually try patients on Topamax first. We titrate up from 25mg per day to 100mg per day until we find a level that works. 50mg per day works well for me. Some of my patients only take 25mg per day. Depakote, most of my patients dont care for it. I hated it. Depakote caused my hair to fall out but it did come back after I stopped taking it. The main side effect for topamaax is weight loss which most ppl like. The only problem I ever had with it was until my body got used to it (about 2 weeks) I had a metallic taste in my mouth. It made my Pepsi taste horrible but I would rather loss the Pepsi than have the headache.


Another thing I always do I give the Rebound headache speech.. When you take meds on a daily basis to stop a heasache you tend to end up in a horrible cycle. As soon as the meds wear off the body goes into "withdrawal" and you get another headache. For example if you take tylenol for your headache, in a few hours the headache will come back and you take another. Anytime we have a patient with daily chronic headaches the very first treatment is to stop all pain meds and caffiene. I know thats not what you wanna hear but it works. And we also start Topamax.

Hope this helps.

[loveslemons]

Norma Jean my question is for you as well as the original poster who wrote:

"The little research I have done has already turned up things like Topomax being called "Dopamax", "Stupamax" etc by former users and it seemed like almost 80% of the people reported having memory issues or not being able to recall certain things and felt like they lost some IQ points( this from this site where you can read reviews on the various meds). Lots of people reported and loving it about losing weight but there were commom issues of tingling in hands and feet, hair loss and trouble focusing".

I have a friend in the loves Topamax camp and has taken it for years, I for one do not. I already have a tremor at the onset of my headaches and during and it was made worse. It impaired my ability to formulate a sentence and I'd stutter. I also did not have an appetite. Not for me! Yet as I said and as this forum shows, some people do love it.

My question for you Norma is this: Do people have a similar reaction to other anti-seizure meds such as Depakote? I never thought to ask about that one but my Neurologist had me try Mysoline (generic for Primidone) and it too was horrible, like being drunk and I was so sleepy. I took it at night and it didn't wear off for almost a day!

I feel mine are more under control these days, they began 10 mos. ago. Some are a 9 but most are a 5 that I manage with Fiorecet and Maxalt is great for the 9's. I used to take Vicodin but stopped for fear of the rebound effect. I have them for about 2 weeks at a time.

Your other symptoms make me wonder if you shouldn't see someone who can do Craniosacral therapy massage. I have been thinking of trying it myself and have a friend that helps control hers by seeing someone. I know that it is an uphill battle to be heard- I kept bouncing back and forth for some time myself and now have a neurologist I like. Maybe you need a neurologist who supports alternative medicine (mine does). Good luck!

[WorriedGf]

Hello
I personally have never tried either drug but my sister has so happened to have tried both. She was not so fond of depakote, she claims it to have made her constantly dizzy and was the cause of her gaining 15 unwanted pounds. Note that this could of been due to the combination of the medications she has to take for multiple medical conditions. As for Topomax, she said it is a godsend. She has been taking Topomax on a daily basis for the last 2 and a half years and rarely suffers from Migraines. But she also has told me that once in a great while she will feel a Migraine coming on and her doctor has prescribed her Midgrin for that specific problem. So she takes Topomax daily and takes Midgrin when she feels a Migraine coming on and has not had and unwanted side effects and has been Migraine free for going on 3 years. I recommend it to anyone who thinks they have reached the point where they think they will have to live the rest of there lives with a constant headache. It made a world's of difference in my sister and I hope it can do the same for you! (Also for those who are looking for a Migraine solution and are on antidepressiants please be careful about using Imitrex! My sister had 9 Gran Maul Seizures due to the combination of Lexapro and Imitrex!)

[Prevenger]

I took Dopamax for years for my migraines (yes, I called it that.) The funny thing is...I cant really tell you whether it helped them or not. I was (am) addicted to my pain meds and THAT causes more migraines than the 'natural' ones that I get! I am my own worst enemy.

My dosage was all over the board as my neuro tried various combos of drugs. Of course, ALWAYS ALWAYS ALWAYS wean ONto the drug slowly. I always claimed it was a little bit of hell in a bottle. I varied from 75mg to 200mg (ugg...zombie city)

Let me list the side effects I experienced.
• Weight-frickin-loss! I went from 180 to 135 in a season....and I'm 5'10"!
• My beloved Coke tasted AWFUL! I couldnt even drink it.
• I had so little energy that walking up a flight of steps was a challenge
• confusion
• inability to think straight. I had to quit doing my favorite Sudoku puzzles. No reasoning skills left in my head.
• for instance: adding two-digit numbers in my head was near impossible. Like doing a bowling score. Had to write down the spares and strikes total for the next frame..
• I am an excellent, defensive, relatively fast driver. Totally lost my edge in feeling safe behind the wheel. Actually went out and bought a car with side airbags to feel safer.

[Prevenger]

also, a friend of mine was a drug rep. One of the drugs she "represented" was Topamax. She, of course, knew about the weight loss capabilities of the drug. She tried taking her own samples to lose a few lbs...but it was such hell to be on that she quit taking it. There have actually been weight loss studies done with it and it is not approved for that use, as the side effects are much too severe.

Also forgot to mention... just because Imitrex doesnt work for you doesnt mean you shouldnt try a different triptan med! Dont let you doctor tell you that they are all similar. They are, to a degree. NONE of the Imitrex methods work for me (pill, shot, or nose spray)...and now they have their new drug - Treximet - which is basically Imitrex and Ibuprofen. Soooo, of course that didnt work for me either.

Relpax works wonders for me (taken with ibuprofen) If you try Relpax and it doesnt work...try another and then another (Maxalt, AMerge, Zomig, Frova...). ONE of them might work for you!

[Robert_325]

Zomig works better than anything I've ever used for headaches. It's kind of pricey but in the middle of a migraine who cares? God bless.