Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Topax For Migraines

jesscarmel

By jesscarmel
in Related Issues & Disorders

Recommended Posts

jesscarmel Enthusiast
jesscarmel
Posted

Hello

As stated in a previous post, my dizziness has been diagnosed as migraine related so now the neuro wants to prescribe topamax in a very small dose for the migraine. in big doses it is a pretty strong med but in small doses it is fda approved for migraines. anyways, i just wanted to know if anyone has taken this for migraines or any other illness?

Thanks

Jess

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


mamaw Community Regular
mamaw
Posted

My son has tried topamax for headaches but he didn't get any results....He has had the best luck for his headaches using cranial scral therapy.....

mamaw

Jerri Ward Apprentice
Jerri Ward
Posted
My son has tried topamax for headaches but he didn't get any results....He has had the best luck for his headaches using cranial scral therapy.....

mamaw

I have been taking Tomapax for almost 1 yr. now. I take 600 mgs. daily. It has been a miracle drug for me. I don't know what I would do with out it. I hope that it works for you.

tarnalberry Community Regular
tarnalberry
Posted

I take it as a migrain preventative, at 100mg a day (75mg at night, 25mg in the morning). (Standard dosage for migraines is to titrate up to 400mg/day. "Standard" just the mean to a wide curve, however, in this case.)

While I had the most common annoying side effects when I first started it, they did wear off with patience. The small amount of fatigue took about four weeks to wear off (and is part of the reason I am sticking with the lowest reasonably effective dose for me). Loss of appetite took about six weeks to wear off. And the tingling/numbness in the hands/feet took about twelve weeks to wear off most of the way (it was fairly annoying at first).

But the improvement in the effect of the migraines on my life has been *substantial*. I would be down for days with a migraine, and I'd get them more than once a week. I was working *far* below optimal at all times. The medication has significantly lessened the severity, reduced the number of symptoms I get, and significantly reduced the frequency of migraines. (I believe they are at least somewhat related to barometric pressure, a trigger I can't really avoid.)

Unless you have a contraindication, I would definitely encourage you to give it a try - for at least four to six months. Don't give up because of the side effects too quickly. There's a trade off to be had, and, at least for me, it was well worth it. (Unfortunately, it is an *expensive* med - on the order of $200/month for 100mg excluding insurance (I don't actually think that 200mg or 400mg would actually be that much more, based on the costs as I titrated up from 25mg/day) - so do check how much is covered by your insurance.)

jesscarmel Enthusiast
jesscarmel
Posted
  • Author

thanks for your replies. i hope it takes my dizziness away. at work alot of our kids our on it for bipolar and ppl call it dopamax because it makes you "dopey" and "stupid". i guess you guys havent found that. i'm nervous about its interaction with the pill because it can lower the efficacy of it, which i wouldnt care about normally because we do want to try and have kids in a year but studies in rats have shown birth defects in thier babies when taking topamax during pregnancy. my dr said you dont have it to be on it forever because it changes the chemistry of the brain or something and then you can go off it- is that true?

tiffjake Enthusiast
tiffjake
Posted

I hope that your experience is like Tiffany's, but just to share my experience with it. My husband took it for a month and got the most terrible mood swings. When he stopped taking it, they went away (and it did *something* for his headaches, he said, but it wasn't worth feeling out of control of his moods).

Just wanted to give you another story. I do hope that it works for you!

jesscarmel Enthusiast
jesscarmel
Posted
  • Author

[i've only taken one pill so far but ive though about it and it sounds like a really serious medication and im scared to be on it. i dont know if im going to take it and will call the dr monday to see about a different one. is it dangerious to stop taking it after only taking one? it said you could have a seizure but i think thats if you were taking it for a while. i took one 25 mg. i m just nervous about the whole birth defect thhing combined with the fact that it lowers birth control. maybe im being paranoid! i geuss if its only a few months than im okay with it but how can a medication work for ever when you o nly take it for a few months?- maybe i heard wrong

the whole seizure thing makes me nervous too..........

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


tarnalberry Community Regular
tarnalberry
Posted

that's true - the trade offs go both ways, and there could be side effects that are not worth it, that are worse than the symptoms that you're experiencing, even if they were to go away. if I thought the side effects I had the first month were to last throughout the time I took it, I would never have stayed on the medication - my hands and feet would feel practically numb for an hour a day, to a point I thought was dangerous. moodiness can occur too - my primary point was that in some drugs (and this is one) some of the side effects are well known to be transient.

the birth control contraindication is a different thing to consider. if you're still waiting for a year to have kids, you could use a backup method for that time period, give it a chance to work for you for a while, and then taper off. but just trying to find a different med is another option. I really don't know how many other daily preventatives are out there. that would definitely reduce the risk in the case of an accident.

(the seizure warning is mostly for epileptics, and is for the higher dosages and longer term treatment.)

(there are lots of other medications that work in manifesting a long term change after only using them for a short while. the exact mechanism can often vary.)

jesscarmel Enthusiast
jesscarmel
Posted
  • Author

thanks tiffany. im going to talk to the psychiatirst at work who knows of all these meds and then call the neuro again. i didnt take it last night. i wish there was a more natural way to prevent migraines which im going to look into.

Jess

flurry Newbie
flurry
Posted

My kids are both on beta blockers fas pain maintanance or migraines. They take zomig and frova when they get migraines. They also get the dizziness and nausea.

I know that topamax is a mood regulator. I have never seen it used for migraines. Ask about zomig and frova. They are great and work fast.

Flurry

jesscarmel Enthusiast
jesscarmel
Posted
  • Author

apparently cheese can trigger migraines and i eat a lot of cheese but i only eat low fat cheddar and parmesan and it seemed to stress "aged" cheese so who knows. i dont know what i would do if i couldnt eat cheese but i geuss its worth a try?!

Cottage-Soul Apprentice
Cottage-Soul
Posted

Hi Jesscarmel,

I've been on Topamax for about 2 months now for daily migraines. I'm still getting the migraines, the side effects from the Topamax are annoying...tingling in my hands and feet, forgetfullness, moodiness as I upped my dosage to 200 mg (have since cut back down to 150), periods of hyperness and loss of appetite which didn't last (drats!). There is a really good message board you can read, no longer can post to unfortunatley - but you will learn a lot of the pros and cons of the medicine.

Open Original Shared Link

Honestly, if I were losing weight on this drug, I wouldn't mind staying on it for awhile longer, but I am hoping once I go Gluten/wheat/dairy free that the migraines will go away and I can get off the stuff. I am so fatigued I barely get anything done. If you continue to take Topamax, take a Biotin supplement - a LOT of women had a problem with hair loss. The Biotin is safe and any extra you take will just be peed out. :rolleyes:

Open Original Shared Link

And add Folic Acid in case you do get pregnant since Topamax can interfere with that as well.

jesscarmel Enthusiast
jesscarmel
Posted
  • Author
Hi Jesscarmel,

I've been on Topamax for about 2 months now for daily migraines. I'm still getting the migraines, the side effects from the Topamax are annoying...tingling in my hands and feet, forgetfullness, moodiness as I upped my dosage to 200 mg (have since cut back down to 150), periods of hyperness and loss of appetite which didn't last (drats!). There is a really good message board you can read, no longer can post to unfortunatley - but you will learn a lot of the pros and cons of the medicine.

Open Original Shared Link

Honestly, if I were losing weight on this drug, I wouldn't mind staying on it for awhile longer, but I am hoping once I go Gluten/wheat/dairy free that the migraines will go away and I can get off the stuff. I am so fatigued I barely get anything done. If you continue to take Topamax, take a Biotin supplement - a LOT of women had a problem with hair loss. The Biotin is safe and any extra you take will just be peed out. :rolleyes:

Open Original Shared Link

And add Folic Acid in case you do get pregnant since Topamax can interfere with that as well.

Hi

Thanks for all that great info. i read through some of people's experiences and hair loss seems pretty big. i do not want that! teh weight loss piece sounds nice but i think im goign to try goign off the pill first to see if that helps!

jesscarmel Enthusiast
jesscarmel
Posted
  • Author

Hi

I had said earlier that the dr said i would only have to take it for a few months. here is his explanation in case anyone is curious. very interesting!

Migraine is caused by biochemical abnormalities in the brain and Topamax and other medications for migraine prophylaxis may change brain chemistry away from one that is promoting migraine recurrence. It may take up to 6 weeks for the biochemical change to occur once the medication has been started or after any increase in dose which is why you may not notice any benefit from the medication for several weeks. Once the biochemical change in the brain has occurred the medication is no longer needed. I usually suggest continuing the medication until the migraine symptoms are minimal for at least 3 months. If symptoms do start recurring once the medication has been discontinued then it can be restarted and continued for a longer period of time

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,979
    • Most Online (within 30 mins)
      7,748
    volivier
    Newest Member
    volivier
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      New Celiac Mama in My 30s

      By knitty kitty · Posted

      @tiffanygosci, Hello.  I apologize for your thread being hijacked.   I recognize your symptoms as being similar to what I experienced, the migraines, food and chemical sensitivities, hives, nausea, the numbness and tingling, joint pain, tummy problems, sleep problems, emotional lability, and the mom brain.  My cycle returned early after I had my son, and I became pregnant again with all my symptoms worsening.  Unfortunately, I lost that baby.  In hindsight, I recognized that I was suffering so much from Thiamine deficiency and other nutritional deficiencies that I was not able to carry it.   Celiac Disease affects the absorption of nutrients from our food.  There's eight B vitamins that must be replenished every day.  Thiamine Vitamin B1 becomes depleted first because it cannot be stored very long, less than two weeks.  Other B vitamins can be stored for two months or so.  But Thiamine can get low enough to produce symptoms in as little as three days.  As the thiamine level gets lower, symptoms worsen.  Early symptoms like fatigue and anxiety are often attributed to life situations, and so frequently go unrecognized by medical professionals who "have a pill for that".   I used to get severe migraines and vomiting after gluten consumption.  Thiamine and the other B vitamins are needed to turn carbohydrates, fats and proteins into fuel for our bodies.  With a large influx of carbohydrates from gluten containing foods, the demand for Thiamine increases greatly.  Available thiamine can be depleted quickly, resulting in suddenly worsening symptoms.  Emotional stress or trauma, physical activity (athletes and laborers) and physiological stresses like pregnancy or injury (even surgery or infection) increase the need for Thiamine and can precipitate a thiamine insufficiency. Pregnancy requires more thiamine, not just for the mother, but for the child as well.  The mother's Thiamine stores are often depleted trying to meet the higher demand of a growing fetus.  Thiamine insufficiency can affect babies in utero and after birth (autism, ADHD).  Having babies close together doesn't allow time for the mother to replenish thiamine stores sufficiently.   Thiamine insufficiency can cause migraines, pins and needles (paresthesia), and gastrointestinal Beriberi (gas, bloating, diarrhea or constipation, back pain).   Thiamine deficiency can cause blurry vision, difficulty focusing, and affect the eyes in other ways.  Thiamine deficiency can damage the optic nerves.  I have permanent vision problems.  High histamine levels can make your brain feel like it's on fire or swelling inside your cranium.  High histamine levels can affect behavior and mood.  Histamine is released by Mast Cells as part of the immune system response to gluten.  Mast Cells need Thiamine to regulate histamine release.  Mast Cells without sufficient thiamine release histamine at the slightest provocation.  This shows up as sensitivities to foods, smelly chemicals, plants, and dust mites.  Thiamine and the other B vitamins are needed to lower histamine levels.  Vitamin D is needed to calm the immune system and to regulate our hormones.  Menstrual irregularities can be caused by low Vitamin D.   Celiac Disease is a disease if Malabsorption of Nutrients.  We must take great care to eat a nutritionally dense diet.  Our bodies cannot make vitamins.  We must get them from what we eat.  Supplementation with essential vitamins and minerals is warranted while we are healing and to ensure we don't become deficient over time.  Our bodies will not function properly without essential vitamins and minerals.  Doctors have swept their importance under the rug in favor of a pill that covers the symptoms but doesn't resolve the underlying issue of malnutrition. Do talk to your doctor and dietician about checking for nutritional deficiencies.  Most blood tests for the eight B vitamins do not reflect how much is available or stored inside cells.  Blood tests reflect how much is circulating in the blood stream, the transportation system.  Blood levels can be "normal" while a deficiency exists inside cells where the vitamins are actually used.  The best way to see if you're low in B vitamins is to take a B Complex, and additional Thiamine and look for improvement.   Most vitamin supplements contain Thiamine Mononitrate, which is not easily absorbed nor utilized by the body.  Only thirty percent of thiamine mononitrate listed on the label is absorbed, less is actually utilized.  This is because thiamine mononitrate is shelf stable, it won't breakdown sitting on a shelf in the grocery store.  It's so hard to breakdown, our bodies don't absorb it and can't turn it into a form the body can use.  Take Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) which the body can utilize much better.  (Ask for an Erythrocyte Transketolace Activity test for Thiamine level.  Though not accurate, this test does better picking up on a thiamine deficiency than a blood test.) Are you keeping your babies on a gluten free diet?  This can prevent genetically susceptible children from developing Celiac Disease.   P. S. Interesting Reading  Thiamine deficiency in pregnancy and lactation: implications and present perspectives https://pmc.ncbi.nlm.nih.gov/articles/PMC10158844/ Descriptive spectrum of thiamine deficiency in pregnancy: A potentially preventable condition https://pubmed.ncbi.nlm.nih.gov/37458305/ B vitamins and their combination could reduce migraine headaches: A randomized double-blind controlled trial https://pmc.ncbi.nlm.nih.gov/articles/PMC9860208/
    • trents
      Outgrow celiac?

      By trents · Posted

      @Riley, on this forum we sometimes get reports from people with similar experiences as you. That is, their celiac disease seems to go into remission. Typically, that doesn't last. At age 18 you are at your physical-biological peek in life where your body is stronger than it will ever be and it is able to fight well against many threats and abuses. As Wheatwacked pointed out, absence of symptoms is not always a reliable indicator that no damage is being done to the body. I was one of those "silent" celiacs with no symptoms, or at least very minor symptoms, whose body was being slowly damaged for many years before the damage became pronounced enough to warrant investigation, leading to a diagnosis. By that time I had suffered significant bone demineralization and now I suffer with back and neck problems. Please, if you choose to continue consuming gluten, which I do not recommend, at least get tested regularly so that you won't get caught in the silent celiac trap down the road like I did. You really do not outgrow celiac disease. It is baked into the genes. Once the genes get triggered, as far as we know, they are turned on for good. Social rejection is something most celiacs struggle with. Being compliant with the gluten free diet places restrictions on what we can eat and where we can eat. Our friends usually try to work with us at first but then it gets to be a drag and we begin to get left out. We often lose some friends in the process but we also find out who really are our true friends. I think the hardest hits come at those times when friends spontaneously say, "Hey, let's go get some burgers and fries" and you know you can't safely do that. One way to cope in these situations is to have some ready made gluten-free meals packed in the fridge that you can take with you on the spot and still join them but eat safely. Most "real" friends will get used to this and so will you. Perhaps this little video will be helpful to you.  
    • Wheatwacked
      Outgrow celiac?

      By Wheatwacked · Posted

      @Riley., Welcome to the forum.   It was once believed that Celiac Disease was only a childhood disease and it can be outgrown.  That was before 1951, before gluten was discovered to be cause of Celiac Disease, also called Infantilism.  Back then Cileac Disease was thought to be only a gastro intestinal disease, once you  "outgrew" the colicky phase, you were cured. You were so lucky to be diagnosed at 5 years old so your developing years were normal.  Gluten can affect multiple systems.  The nervous system, your intellegence. The muscules, skeleton. It can cause neurological issues like brain fog, anxiety, and peripheral neuropathy.  It can cause joint pain, muscle weakness, and skin rashes. Epilepsy is 1.8 times more prevalent in patients with celiac disease, compared to the general population. Because through malabsorption and food avoidances, it causes vitamin D and numerouus other essential nutrient deficiencies, it allows allergies, infections, poor growth, stuffy sinuses and eustacian tubes. There is even a catagory of celiac disease called "Silent Celiac".  Any symptoms are explained away as this, that or the other thing. Gluten is one of the most addictive substances we consume.  Activating the Opiod receptors in our cells, it can numb us to the damage that it, and other foods are causing.  It has become socially acceptable to eat foods that make us feel sick.  "There's a pill for that".   It is generally accepted that n fact you are weird if you don't. The hardest part is that if you don't eat gluten you will feel great and think why not.  But slowly it will effect you, you'll be diagnosed with real diseases that you don't have. You'll be more susseptable to other autoimmune diseases.  As you read through the posts here, notice how many are finally dianosed, after years of suffering at older ages.  Is it worth it? I think not. Perhaps this book will help:  Here is a list of possible symptoms:   
    • Riley.
      Outgrow celiac?

      By Riley. · Posted

      Hi! Im Riley, 18 years old and have been diagnosed for 13 years.. the testing started bc I stopped growing and didn’t gain any weight and was really small and thin for my age.  I got diagnosed when I was 5 and have been living gluten free since, in elementary and middle school it was hard for me and I kept contaminating myself bc I wanted to fit in with my friends so so badly. I ate gluten secretly at school and mostly regretted it 30 minutes later.  I’ve had symptoms like diarrhea, nausea, headaches, stomachaches, threw up a lot and was really emotional.  In 2022 I really started working on myself and tried to stay gluten free and if I did eat gluten I wouldn’t tell anyone and suffer in silence.  Last year in July I begged my mom to let me „cheat“ one day bc I just wanted to fit in… I ate a lot of different stuff, all the stuff I missed out on in my childhood like nuggets, pizza and all that.. I didn’t have symptoms that day and was doing really fine My mom and I wanted to test how far we can go and said we would test it for 12 weeks to get my blood taken after to see if I’m doing good or if symptoms start showing  As a now 18 year old girl who finally gained a normal weight and doesn’t get symptoms I’m to scared to get tested/my blood taken cuz I finally found comfort in food and it got so much easier for me and my family.  A year and 4 months later i still didn’t get any symptoms and have been eating gluten daily.  I’m scared to get tested/my blood taken cuz what if I’m actually not fine and have to go back to eating gluten free. Any tips to get over that fear and „suck it up“ cuz I know I could seriously damage my body… sorry if I seem like a idiot here… just don’t really know what to do :,)
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      There is much helpful 'truth' posted on this forum. Truths about Celiac Disease are based on scientific research and people's experience. Celiac disease is inherited. There are 2 main Celiac 'genes' but they are variations of one gene called HLa - DQ What is inherited when a person inherits one or both of the DQ2 or the DQ8 is a predisposition to develop celiac disease after exposure to a environmental trigger. These 2 versions of the DQ gene are useful in diagnosing  celiac disease but there are about 25 other genes that are known to influence celiac disease so this food intolerance is a multigenic autoimmune disease. So with so many genes involved and each person inheriting a different array of these other genes one person's symptoms may be different than another's symptoms.  so many of these other genes.  I don't think that much research on these other genes as yet. So first I wrote something that seem to tie together celiac disease and migraines.  Then you posted that you had migraines and since you went gluten free they only come back when you are glutened. Then Scott showed an article that reported no connection between migraines and celiac disease, Then Trents wrote that it was possible that celiacs had more migraines  and some believed there was a causal effect. You are each telling the truth as you know it or experienced it.   
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.