Global Patient Feedback for Migraine / Headache ( Post a comment )

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Question/Comment:

I take 1000mg of Keppra XR twice a day along with 1/2 tablet of Lortab 7/750 twice a day. My neurologist and I tried different combinations of medicines until we finally hit onto something that works for me. I am down from having migraines 26 days oof the month to about 3-4. I am concerned about taking the Lortab but my neuro feels that as long as I'm only taking half I should be fine. The prescription is written for me to take 1 Lortab 2 times a day but I've found that I only need half twice a day. I haven't really had a side effects from the Keppra XR. Was originally on Keppra but when the generic came out my insurance wouldn't pay for the name brand. Plus my neuro didn't want me taking the generic, as alot of his patients either started having seizures and/or migraines again. I went back to having migraines almost daily on the generic. So, my neuro decided to try the XR and it works wonderfully. My migraines are back down to about only 3-4 per month and I can live that. I'm so glad to have found my neurologist, he is wonderful and actually listens takes what I tell into consideration. Other dr's thought I was pill seeking when I simply wanted the headaches to go away. I hope this helps.

49 year old Female

Question/Comment:

I suffered a MTBI (Minor Traumatic Brain Injury) and ever since, have been suffering from daily pain and headaches. From post concussive headaches, migraines and some symptoms of cluster headaches. The headaches seem to be getting worse as time goes by. I am usually seen by an APRN and They give me plenty of medication. I feel that all this medication is slowly destroying me inside. Do other people take this much medication for similar issues?

38 year old Male

Answer/Reply:

I have suffered from Migraine without aura since I was nine years old, I am now 43. The migraines would cause me such severe pain and the the nausea and uncontrollable vomiting would last for hours. Three years ago I began experiencing the nightmare of Cluster headaches, and I mean nightmare. The pain is so severe that it does not surprise me that they are known as 'suicide' headaches. The only thing good about them is that they do not cause any nausea and vomiting. The pain was right-sided and happened every single night for six months straight. I thought I was dying of some horrible brain disease! The neuro put me on; Topamax, Verapamil, Butalbital, Vicodin, steroids, Effexor, Amytriptiline, Celexa, Frova, Neurontin,and Lyrica. At some point the Celexa, which is an anti-depressant, replaced the Effexor because of the severe stomach pain I experienced. The Topamax was awful-left me without any decent taste-buds and the lack of concentration and dizzy spells were enough to put me out of work, and severe stomach pains. The Cluster's eventually went into remission and returned six months later to last for two months. I have been in remission since March of last year and I am praying they never return, however, studies have shown them to recur at some point down the road. Physicians have a tough time treating headaches like these as the onset happens after falling asleep, by the time you wake up from the pain, it is so severe that anything taken will not work until the pain stops, which can be as short as twenty minutes to the longest one I had at nine hours. I was in the hospital at that point being given Morphine, which did not work and only caused vomiting. Imitrex and Zomig were not options for me for some reason, and now I have been told to consider a home oxygen unit that may be effective, but only after the pain has begun. I really hope that research is active and continuing for sufferers like us, it is no way to live.

43 year old Female

Question/Comment:

Ialso have severe migraines, dating back to about 10 years old, in my case it is genetic as migraines run rampant on both my mother and father's families, traced on my mothers side back to her great, great, grand mother, I get them in cycles too. My neuro and I work on pain control, because what medication combo works well for a while, suddenly quits working. Also have sleep apnea, another aggravation. I have held off for years taking Hydrocodone as I am afraid I will look like a "pill chaser". I used that successfully was even able to work at Exide for 10 years, but stopped cold turkey when I moved back to Tennessee. Now the pain gets very high even before a migraine attack.50% of the time I have warning, smells, visual disturbances, , vomiting, and diahrea. The other 50% of the time migraines hit without warning. My grandkids are wonderful helping, and my daughter Amy understands a little, the lucky girl has never had a migraine. She remembers me being sick a lot though as she was growing up. Could it be time to ask for the Hydrocodone? Or is there another alternative? I have always been careful with pain meds, really try and hold back taking them, until very necessary.

55 year old Female

Question/Comment:

I am 50 years old and been having migraines for 25 years. Since I've turned 40 my migraines have increased in severity and fequency each year. I have tried everything. This year I finallly found a combination that seems to work - Topamax 75mg 2 times daily, Imitrex 100mg and Vicodin prn. I am also on depression medications Wellbutrin and Effexor. Lately I have been experiencing confusion, memory loss, feeling of being in a haze, dizziness - I have been joking that I feel that I have the beginings of early onset dementia because I feel I'm walking around in a DAH! faze. Do you think this is do to the dosage of Topamax that I'm on?

51 year old Male

iGuard.org Answer/Reply:

It's hard to tell what is causing your symptoms. Twenty percent of iGuard members report memory loss and confusion when taking Topamax. About 5% of iGuard patients report dizziness. According to the Topamax package insert, a small percentage of patients report memory loss and confusion while doses are being are being changed, but this usually does not continue once their dose is maintained. Mood and behavior changes, as well as dizziness have also been reported with Wellbutrin and Effexor - so your symptoms could be caused by any combination of the 3 medications.

It is a good idea for you to make an appointment with your doctor to discuss your symptoms and possibly adjust your medication. Please do not make any changes to your medication without talking to your doctor first.

Answer/Reply:

I tried Topomax and it made me slow down so much that it took me 8 hours to do what would have taken 45 minutes at work. I been on every SSRI out there and it has not helped, the SSRI medications made my stomach go crazy since I already had acid reflux and IBS. A Gastro Doc told me that all SSRI type drugs would be a big problem to my GI tract and to stay away from them. The same goes for anti seizure drugs which were a big disaster for me and so I finally went to Fentanyl after landing in the hospital.

51 year old Female

Question/Comment:

Hello. My neurologist said that hormones from the age of 50 +. My first migraine was in my mid-40's and I am not on a hormone replacement pill because of the risk for cancer. It seems there's always something. But, remember 10 years ago, we didn't know what an i-pod was, so hang in there, everyone...it has to get better. Thanks.

54 year old Female

Question/Comment:

I staeted suffering migraines 3 1/2 years ago, they hit hard and have not let up. My drs. have tried alot of different meds. and nothing seems to work. can't stand noise or light they seem to last anywhere from 16hrs to 5days. had a mri done several leasions were found and dr. thinks i might have MS. alls i want is a way to control these things.

52 year old Female

Question/Comment:

I have very bad migraine headaches. October 7, 2007, I had brain surgery , where the doctor went in and removed the spinal fluid that was building up and putting pressure on my brain. Before he went in to do the surgery, he told me the risks and said if I started bleeding he would stop immediately so I would not go blind. I started bleeding so the he didn't get to complete all that he wanted to get done. He did puncture a cyst so the fluid would drain and when he pulled the drain tube out a week later a blood clot broke loose and came out the tube. Thank The LORD. Anyway, I have since moved and the Neuro Doctor I am seeing now will not do surgery again on me and is trying to treat my migraines as normal migraines when they are from the pressure building back up. NO MRI that I have ever had has showed the cyst and since he can't see it I am having to suffer with them. I can't live a normal life and can't make him understand. I have showed him all my medical records from the other doctor and MRI's. Can anyone give me any suggestions as how to get him to understand that I need to have a shunt put in???? I am getting DESPERATE!!!!!

46 year old female

47 year old Female

Question/Comment:

I have headaches that I can not think at all only run on autopilot. then 3 years ago I was hospitalized as they went worse one day and I could not hardly see there was no saliva in my mouth and all my electrolites in my body went haywire.
After 3 days in the hospital they told me that I have rare migraines I am not sure what that means? I had been taking topamax 50 mg 2x per day until I no longer had insurance about 6 months ago. It helped my headaches from coming and I seldom had them while taking it. What are rare migraines?

49 year old Female

Answer/Reply:

this is to all the headache people who are having success-

I am glad y'all are getting relief. I have a very rare headache disease called Hemicrania Continua. It's the pain of Cluster Headches with some of Migraines symptoms like light/sound sensitivity and nausea. I am on 4 meds for it, 2 strong muscle relaxers and Topamax 300mg, and 300mg of long-acting Morphine a day and still have pain coming through. There are only about 100 of us in the whole US with this disease. There is a drug that works for some called Indomethicin but it doesn't work for me, and it makes my right arm hurt very badly as well. I have had these headaches since I was 10 yrs old, there have been a couple remissions and I even had sinus surgery to try to get rid of this but have found out now it's a brain disorder and it really can't be fixed. So, if you guys are finding meds to ease your pain please be thankful, because I am in pain everyday from this damn disease and would love to find something to take it away completely but nothing does. I also have Bi-polar disorder to deal with too, So together I am on 10 meds a day.

Nemo

37 year old Female

Answer/Reply:

Hi, I also suffered from this condition since a very small child, as being born with a twisted optic-nerve severe eye problems(still wears glasses). Never any treatment for it,then 15 years ago I fell on the job and broke my neck and back and pelvis. I also hit my head, fractured skull with brain matter coming through(they did surgery immediately on head and thigh). I've waited 14 years for the technology for this new way to do the cage for lower spine. They did it, but headaches are still there, neck getting done next.
Just wanted to say when you think things are bad; someone else is always worst off. I see others in surgeons office and see this every week. Thank God I am walking, able to take meds and just suffer a bit, although its painful and I have to lay down alot. I remember 12 years in a craftmatic bed, watching my son grow up. This all happened when on my 30th birthday. So good luck . Vicar Susan Ann

45 year old Female

Answer/Reply:

Rare Migraines are just that they do have a triger something that bring them on. but if you no longer have insurance you can contact the company about the topamax and ask for help getting the meds. They are very good about getting them what you need. Just go to there web site and you can fill-out there paperwork and have your doctor sign it and write the percription then you can get the medication that help you so much.

44 year old Female

Question/Comment:

I have suffered from migraines for over 25 years and now my oldest daughter is getting them what is the chance that my youngest daughter will start having them when she gets older?

47 year old Female

Answer/Reply:

I don't have any scientific information to back me up on this, but my mother is a migraine sufferer and I am one of four of her children (3 girls and 1 boy) and I am the only one of those four that suffers from migraines. I think it is just "the luck of the draw" as they would say. Hopefully it will pass your other child by........I cross my fingers for her.

29 year old Female

Question/Comment:

I have had headaches that were caused by barometric pressure changes. These became migraines that would be relieved only my Imitrex or Zomig but would continue to reoccur nightly for months. I finally figured out that the 2-3AM migraines were due to sleeping on my side. I have degenerating discs in my neck (3-level fused) and have now confirmed these conditions are causing my AM migraines. I was told I had bone spurs in my sinus cavities but I had those long before my migraines. If you are at a loss as to what is causing your migraines be sure to have your cervical discs checked!

56 year old Female

Answer/Reply:

I just recently discovered a lot of my migraines are caused by barometric changes too, and I wanted to share a neat thing that I had found interesting and useful....

Go to weather.com and click on health and safety, then click on aches and pains, then it will take you to a new page where you enter your zip code. This will bring up another new page and if you scroll about half way down, they give a pain index for the week with a number from 1-10. I have found that starting at a 4, I get a milder form of a migraine and the higher the number is, the worse the migraine! Be forewarned though, that these numbers are updated and do change daily, so if you see that Saturday is a 6, give it another day or two and it may turn into Friday as a 7 and Saturday as a 3. This has really helped me in trying to do the prophylactic treatment my neuro wanted me to do with Aleve and Magnesium 2-3 days before I know I am going to get one and have found some improvement.

29 year old Female

Answer/Reply:

This is an awesome tool. What a great idea. Thank you so much. I definitely have days where the weather plays a role in my headaches. To know the night before will be useful.

35 year old Female

Question/Comment:

I suffered from migrane headaches for 35 years. Usually 3or4 week.
They never caused nausea, just severe headaches that would last 12or13 hours. Caffergot would help if taken immediatly at headaches first sign, but there was nothing to prevent future headaches. Then 7 years ago I read an article in the Chicago Tribune about an over the counter supplement, CO Q 10, that among other things could be helpful to migraine sufferers. Naturally anything that might offer relief had to be tried. I started taking 120mgs of CO Q 10 daily and after 4 montha I was headache free.
That was 7 years ago and I'm still headache free. To me it was like a miracle.
74 year old male

76 year old Male

Question/Comment:

I am a 31 year old female and as far back as I can remember i have had nasty headaches. When I was younger my mother had to bring me to the ER because of the headache. I had an MRI and they told me I have Siniusitus Migraines. The past couple of years when I get these headaches I can usually cure them with Execdrine Migraine pills. But now nothing can cure them, but I still take the pills and I also go hibernate. Due to these headaches I also get the chills, hot flashes and I also throw up. But I am handling it.

32 year old Female

iGuard.org Answer/Reply:

I am 36, and always had migranes, just got worse as I got older...I take Inderal once a day and it works for me, I went to an ENT and neurologist... and I have a deviated septum, so some might be due to that, also now have just bad headaches due to menstral time. There is always something that can work, you just have to find a doctor that is willing to try things until it works.

Answer/Reply:

i am 33 years old i have been where you are at with how the over counter medicine such as excedrin does not work for migranes i have been to the hospital at least 4 times for migranes in the past month and a haf my primary care doctor recommended a neurologist to help me and the neurologist put me on 50 mg of amitriptyline for the past month and it is working check with your doctor about this medicine

33 year old Female

Answer/Reply:

I've suffered from migranes since I was 7 years old. Then in my early 30s I had the same symptoms you are experiencing. I heard a doctor speak about Menopause and then read her book. The author is Dr. Christiane Northrup and she specializes in gynocology. You may be starting perimenopause. I had doctors tell me I was too young to be menopausal and wouldn't consider this diagnosis. After 14 years of menapause symptoms I finally finished with menapause in my mid-40s. It is different for everyone and can be hard to diagnose. I hope this information helps.

52 year old Female

Question/Comment:

I am 29 and have been suffering from migraines for over 15 years. I have found several triggers, mostly citric acid (found in a lot of sodas, and most commonly in your orange, lemon, and lime flavorings) and also wine. I have eliminated these from my diet and found a mild improvement in my migraines. I have tried many different preventatives and medications, some with success, some without. I have seen neurologists and have had scans done in the past, all "normal". I moved to a new area 2 years ago and haven't able to get my full medical record, and am now going through the whole routine all over again. I just had my MRI and my brain looks normal, but the doctor mentioned something that was never mentioned before......I have a deviated septum to the right. At first, I thought nothing of it.......my nose is crooked, so what. But I got to thinking about it and looked it up online for a possible connection and found a couple of articles in which a deviated septum was the cause/trigger of migraines. It mentioned common triggers (which I just discovered was the case for me) such as changes in the weather and hormones (which is also the case for me - menstrual related migraines) because it causes the vessels in the nose to swell and press on things they shouldn't press on. In the reports, there was supposedly a 40% chance of complete migraine relief with surgery and 52% chance of improvement and only 8% chance of no change at all. To me, a 92% chance of any kind of improvement sounds like surgery is worth the chance.

Has anyone else heard of this?

29 year old Female

Answer/Reply:

I am 40 and have suffered from migraines for YEARS, only I didn't realize they were migraines. I was even told by one primary care doc that I did not have migraines because Imitrex didn't relieve them-he was full of bologna! Axert works for me. I was finally sent to a neurologist who treated me successfully. He prescribed me a book that explained so many people have sinus surgery that does nothing for their migraines. It is often that the swelling in the sinuses is mistaken for sinusitis and is really migraines. People take decongestants and it relieves the swelling and pain for a short time but comes back and the patients then suffer from rebound. That is when the pain and swelling come back even worse. I was taking decongestants and over the counter pain meds so often that my pain would come back as soon as they wore off so I went to the doctor, she prescribed narcotics and soon I was taking them like candy and I was rebounding from them. My migraine was one that lasted for over a month and only changed in strength. This book also gave a specific diet that you had to stop eating certain foods (caffeine, msg, cheeses, sugar substitutes, citrus fruits, carageenen, and more) and no over the counter pain meds for 2 months. The whole time you are under the care of a Neurologist! Then you add 1 food over a 2 week period to see if it is a trigger for you.
Migraines are caused by your blood vessels expanding and pushing on nerves, not by sinuses. Consider going over this treatment option with a neurologist, they are more versed in migraines than Ear Nose and Throat doctors. I am also a Surgeon's Assistant. And if you move again, ask for a copy of your records from all your doctors. That is advise from an Army wife and Army brat. It can save you alot of trouble with the next physician AND insurance company when they start requiring you to go through medication trials if the lower cost drugs don't work on you. The copy of your records will prove you have already gone through the trials.

41 year old Female

Question/Comment:

Suffered w/ terrible migraines many years and nothing helped until Topamax. Started once a low dose twice a day for a few months, but migraines creeped back in and doctor increased dosage. I've only had one migraine since, because I forgot to take the second dose. Due to the numerous meds I'm prescribed, it's difficult to speak on side effects. As far as my weight, it is still holding steady and my appetite fluctuates as it always has. My dosage is 50mg/ 2x daily.

43 year old female

44 year old Female

Question/Comment:

I started having occular migraines after my duaghter was born. My doctor prescibed topamax for sleep and anxiety and nightmares. It cured my migraines..Bonus! But I lost 17 pounds. I have no appitite and now I weigh 100 pounds. So I'm torn to try to find another pill, That will let me gain some weight. but will help me sleep and keep those headaches and blurry vision at bay.

33 year old Female

Answer/Reply:

Force yourself to eat and hang in there if this is the medication that is the first choice of your doctor's. I went from a siz 10 to 00 in three months when I started taking this medication. I have now been on it for over five years... your appetite does adjust but it will help speed it up if you eat small meals (as often as you can) throughout the day. Lots of protein and good healthy carbs! And don't forget your water!! I'm now back in a size 8 and every once in a while if I don't watch it and stick to an eating schedule miss meals and don't get hungry but sometimes that is just me and not the medicine. The weight has stayed on at this size for 2yrs straight. Gaining weight back was harder than losing weight ever was in my entire life. Hang in there and good luck!

35 year old Female

Answer/Reply:

I used to be on Topamax also but had too many side effects from it. My neurologist then put me on Zonegran which is an old drug similar to Topamax without the side effects. I did NOT lose any weight on the Zonegran :( but it did help my headaches. I am now off of it b/c of kidney stones. Good luck. I didn't have any side effects from the Zonegran.

38 year old Female

Question/Comment:

My will soon be in my 32nd year of migraines -- they started when my first child was 9 months old and two weeks after having my wisdom teeth removed (not certain if either had anything to do with onset). I have an aunt and a niece who also suffer. Back then you got shot up with demerol (sp?) So of course you waited until you were about to die from the pain. I was given the encouragement that they would most likely go away at menopause -- so when menopause started at 37 I was happy -- now I am 54 and still have migraines. Thankfully, not quite as bad. Use to have them 3-4 days just about every week -- vomiting, light/sound sensitive, etc. Now I can go a whole week without one or have 2,3 or 4 days of low level migraine that make me feel as though I am in slow motion. Doctor just gave me Treximet. I have been using Imitrex but it doesn't work that well any more. I doubt these medications are good for anyone but the trade-off, losing 2,3 or more days every week to migraine is simply unacceptable to me. I had success with Treximet the two times I have used it. We shall see if it continues to work.

55 year old Female

Question/Comment:

I use to take Imitrex for my migraines, I used the pills and even the nose spray and they got to the place they didn't work very well. I now take Maxalt and Maxamelt and now they are getting to the place they don't work as well. I still have to take advil with in a couple hrs of taking them to help ease of the migraines. I go to the allergist next month and plan to ask for something different.

I have also tried excedrin,aleve and other OTC med's in past and they don't help. It seems like Im having migraines more and more the old I get. Im also premenapausal.

44 year old Female

iGuard.org Answer/Reply:

Please ask for Relpax. It works like a charm for me with no side effects.

Answer/Reply:

imitrex does not work for me either my primary care doctor sent me to a neurologist and the neurologist put me on amitriptyline and it ids working talk to your docto about the medicine i just mentioned

33 year old Female

Question/Comment:

Nothing "safe" works for my migraines totally. I've been prescribed heavy duty painkillers I prefer not to take (what, I'm like that) but I've been trying to get the whole thing into good overall management for years now. For me, ear acupuncture by a holistic neurologist does work- nothing in the imitrex family does. The rest of the options have rebound effects I can't bear.
Anyone else?
Best of Health and Luck- lady j

32 year old Female

Question/Comment:

I Take Neurontin for my Migrains as well as Neuralgia of my Right Arm and Hand and Neurontin is the only Medication that works. I started off at a high dose of 4500mg/day @800mg 5x/day and now all I take is 600mg 3x/day for a total of 1800mg/day. I was tested for over 5 years and the symptoms did not go away as well as the pain except for the Neurontin Rx. I also was taking 12,000mg of Excedrin Dailey which the Doctors were very upset about but now with the Neurontin I am now in no pain and I am feeleing very good.

56 year old male

58 year old Male

Question/Comment:

I take EXCEDRIN migraine - If any does try this I get the off brand a store brand and works just as good and it cost wat less. It works great for me. I have had migraine from the age 11 yrs old. They get so bad they would take me to the ER. About 3 to 4 times a week. Some time I know when I am getting one by having heat waves or flashes ( its like when you get our pic taking and the flash gets you in the eyes) in the eyes. I have to take 2 at a time and lay down and close my eyes for about a hour or so. I take many other meds some for pain. But not for migraines. Some times smells cam give me one. and some times I wake up with one, the bad thing when that happens is I don't know how long I had it before I woke up. I also have Fibro and joint pain. - I take Lyrica, Ultracet, Skelaxin and Desyrel and these meds do not work for migraines. Thanks

39 year old Female

Question/Comment:

I have been on botox injections for 4 years that has virtually stopped my neurologic migraines then I switched insurance companies (and jobs) and the new insurance company will not pay for the botox injections. I am now unable to pay for the botox ( 750.00) every 3 months and my neurologic symtoms are back making my life a misery. ( my tongue going numb, losing strength in my right arm and leg and tunnel vision) I get migraines with my periods and am having to go to the ER twice a month ( before and after my period) cause people keep thinking I am having a stroke.... and it all can be stopped if I could just get the botox injection like I was getting with my former insurance.

47 year old Female

Question/Comment:

i have really bad headache since i was a kid and migraine ive taken every thing for them but had bad reaction with them finally iam taking venlafaxine that help some what but when i forget to take them i have bad with drawes but i also take lyrica that helps to. i just wish they would go away

46 year old Female

Answer/Reply:

Hi there, hope this helps. Check into your diet,after extensive research I found out that I am allergic to dairy. Believe it or not since I have stayed off of dairy products my migraines have stayed away. I use to get a migraine almost everyday until this discovery. Caffeine is also another food product that can affect your condition. By the way m 14 year old son has suffered from migraines since 7, he is off dairy and the migraines are all gone.Everytime I cheat and have icrecream or cheese I always get a migraine.. But its sooo good. lol. Good luck and take care.

38 year old Female

Answer/Reply:

Have you tried Relpax? They are real expensive, but if you take them when the headace starts, they do the job for me.

59 year old Female

iGuard.org Answer/Reply:

I've been taking Relpax for 6 years now,40mg.Works great!

Question/Comment:

How do you choose a good migraine specialist?

24 year old Female

Question/Comment:

I get severe headaches, currently using esgic-plus, if I take it the moment I feel it coming , it usually works, my headaches are the tipical light and sound sensitive, my temples actually hurt to the touch, to add to the stress of the headache i have the stress of a boss that is a Pharmacist and really doesn't seem to understand how bad these can be. i have had to take compazine and even a percocet to break the cycle ( sometimes it works) catch 22, pain med nausea, what to do. Has anyone tried delayed food allergy testing ?

51 year old Female

Question/Comment:

I have a history of low blood pressure (ranges 80/55 - 90/60) and a Dr. mentioned this could be the cause of some of my migraines. They told me to increase fluids (anything with electrolytes - not water) and increase salt intake to help reduce the occurrences. Many of my migraines are triggered by hormones, stress and diet and sinus and I try to mange them accordingly but this new info about my blood pressure is interesting - any relevance or tie to my migraines?

47 year old Female

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