Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Migraine Aura


AVR1962

Recommended Posts

AVR1962 Collaborator

Okay, had a trip to ER today and doc thinks I may be having trouble with migraine aura. I have had regular migraines in the past so I do know what those feel like but this is not the same so just wondering if anyone here has had them, if you could please share with me what happens to you. I would appreciate. Perhaps I can make the connection. What have you done for them that has been successful?


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



Celiac.com Sponsor (A8-M):



Skylark Collaborator

I am having huge issues with migraines with a classic aura if that's what you mean. The aura lasts maybe 20 minutes and I get weird stuff in my vision. Jagged lines and bright patches. Then the migraine starts.

To help prevent them, my Dr. started me on a product called Migrelief which is high-dose riboflavin, magnesium, and feverfew. We're hoping it will help. He told me to go off caffeine (said I could have one small cup of coffee in the morning when I whimpered), 100% off alcohol, and I am avoiding common migraine trigger foods. There's a list here. They are mostly foods with tyramine and other monoamines or natural MSG. (Added MSG is bad too.)

Open Original Shared Link

I haven't had another aura migraine since I started doing these things so fingers crossed that it might be working.

AVR1962 Collaborator

Skylark, I hope you don't mind me asking more questions as I am trying to figure this out for myself. You mentioned the aura last 20 minutes before the onset of the migraine and that makes me feel that maybe what I am experiencing might be different.

What happened to me this weekend is I woke up each morning with the shakes, shaky so bad inside that I thought I was going to pass out. Food and water did not help. Getting around to do things was making me sweat which it would not normally. The room and everything around me was brighter now normal. I did have a headache but I thought it was from my back proceedure on Friday. I had trouble thinking and was stuggling with my words. Doc said the pins & needles I get in eyes and in between my fingers could be a result of these auras. Does any of this sound familiar to you?

Skylark Collaborator

Everyone's migraines are different. My neurologist and doctor told me that they can cause just about anything as far as weird neurological signs. I have heard of the pins & needles thing and visual disturbances are really common.

I can get a funny metallic taste, ears ringing, trouble focusing my eyes, light sensitivity, a general feeling of malaise, the trouble you mention thinking & coming up with words, vertigo, nausea, and of course the headache. My migraines aren't terribly painful if I can stay in a quiet and dark room, but I still feel generally ill and too nauseous to want much food.

dilettantesteph Collaborator

I used to get regular migraine auras. I sometimes got them as often as daily. What would happen was my vision had wavy lines distorting it like when heat comes off a highway. It made me not able to see very well. It usually lasted about an hour and was not followed by a migraine. Lucky for me. They would come more often under stress, and I have only had one since I have been gluten free and that was during a period of gluten contamination.

peeptoad Apprentice

Okay, had a trip to ER today and doc thinks I may be having trouble with migraine aura. I have had regular migraines in the past so I do know what those feel like but this is not the same so just wondering if anyone here has had them, if you could please share with me what happens to you. I would appreciate. Perhaps I can make the connection. What have you done for them that has been successful?

I no longer have these, but suffered with them for the first 25 years of my life. The aura would precede the actual headache by about an hour or so and it appeared like a "sunspot" (like when you look at a bright light for too long) and always in my peripheral vision. I had a script for Tylenol #3 (codeine), but honestly it didn't do much except add to the nausea. If I caught the headache right at the beginning it lessened it by about 30%, but that was it. Otherwise, I'd sit in a darkened room with ice packs on my neck and head for about 24 hours.

The pain was unbearable... imagine someone driving an ice pick into your right temple and that's about half of the pain I felt.

Man, those were terrible... I sure don't miss them. :(

AVR1962 Collaborator

Everyone's migraines are different. My neurologist and doctor told me that they can cause just about anything as far as weird neurological signs. I have heard of the pins & needles thing and visual disturbances are really common.

I can get a funny metallic taste, ears ringing, trouble focusing my eyes, light sensitivity, a general feeling of malaise, the trouble you mention thinking & coming up with words, vertigo, nausea, and of course the headache. My migraines aren't terribly painful if I can stay in a quiet and dark room, but I still feel generally ill and too nauseous to want much food.

That sounds an aweful lot like what I am experiencing. Can I cry now? When does it stop! Have you found anything that has been able to relieve it successfully?

I have a feeling this was brought on by stress. I have had migraines in the past but nothing like what I am experiencing now.


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



Celiac.com Sponsor (A8-M):



Bubba's Mom Enthusiast

That sounds an aweful lot like what I am experiencing. Can I cry now? When does it stop! Have you found anything that has been able to relieve it successfully?

I have a feeling this was brought on by stress. I have had migraines in the past but nothing like what I am experiencing now.

Please don't cry. Experience tells me it will make the pain much worse. :(

I'm SO sorry you're having to deal with this.

From the book Recognizing Celiac Disease..signs, symptoms, associated disorders & complications By Cleo J. Libonati..There's a strong link between Folic Acid deficiency and migraines. She recommends supplements, as it's hard to get enough from just eating foods with it if one is deficient. Maybe have someone pick some up for you?

Skylark Collaborator

That sounds an aweful lot like what I am experiencing. Can I cry now? When does it stop! Have you found anything that has been able to relieve it successfully?

Doctors are good with migraines. They see them all the time. Didn't your Dr. give you anything to try? If you have no meds I bet you want to cry. Ugh. Call your GP's office, get an appointment, and see if they can call in a migraine medicine.

I put what I'm trying for prevention in my first post above. My Dr. told me to give the Migrelief a month and then come back if I wasn't doing somewhat better. I think he will try propanolol next. Dr. thinks mine are perimenopausal so we may also work with some hormonal things like nonstop birth control pills or an estrogen/progesterone patch.

For the attacks, there is a lot of stuff. Imitrex or related drugs, midrin, or fiorinal are the ones my Dr. said he mostly uses. Midrin and fiorinal can be very sedating but I find midrin really helpful. My Dr. also said painkillers like Alleve, Tylenol, Excedrin Migraine, or Ultram help some people.

My acupuncturist can also help dramatically with a migraine if I can get to her during an attack. Acupuncture can help with stress in general too.

Skylark Collaborator

By the way, if you have nothing to try, see if a strong cup of coffee and your favorite painkiller helps. Caffeine is a vasoconstrictor and is in many migraine medicines. Excedrin Migraine is tylenol, aspirin, and caffeine.

AVR1962 Collaborator

Please don't cry. Experience tells me it will make the pain much worse. :(

I'm SO sorry you're having to deal with this.

From the book Recognizing Celiac Disease..signs, symptoms, associated disorders & complications By Cleo J. Libonati..There's a strong link between Folic Acid deficiency and migraines. She recommends supplements, as it's hard to get enough from just eating foods with it if one is deficient. Maybe have someone pick some up for you?

Thank you for that tip, I will try it.

AVR1962 Collaborator

Doctors are good with migraines. They see them all the time. Didn't your Dr. give you anything to try? If you have no meds I bet you want to cry. Ugh. Call your GP's office, get an appointment, and see if they can call in a migraine medicine.

I put what I'm trying for prevention in my first post above. My Dr. told me to give the Migrelief a month and then come back if I wasn't doing somewhat better. I think he will try propanolol next. Dr. thinks mine are perimenopausal so we may also work with some hormonal things like nonstop birth control pills or an estrogen/progesterone patch.

For the attacks, there is a lot of stuff. Imitrex or related drugs, midrin, or fiorinal are the ones my Dr. said he mostly uses. Midrin and fiorinal can be very sedating but I find midrin really helpful. My Dr. also said painkillers like Alleve, Tylenol, Excedrin Migraine, or Ultram help some people.

My acupuncturist can also help dramatically with a migraine if I can get to her during an attack. Acupuncture can help with stress in general too.

This was the doc in ER and he was guessing pretty much. I have an appt this week with my doc. I know they did somekind of scan or something many years ago when I was having trouble with migraines and concluded that indeed was the issue. This is much different. Yesterday my eyes were so blurry, probably the worst yet. My balance is off but not in the same way as gluten. I tried Eleve and Vick's Sinus relief, neither one helped. Finally last night I had a glass of wine. Always before that's what would kill my migraines and it did the trick again. I don't drink coffee but I will try a cup of black tea today as I feel one coming on already this morning. It is very possible I could be perimenopausal also, I am 49. I have not shown any signs yet eventhough my doc keeps trying to link symptoms, lol! I am on the Pill which gives me a steady amount of hormones.

I found a list of foods to avoid which I am trying, just to see what works but hopefully doc can give me some kind of meds as these a weird and no fun!

Skylark Collaborator

I found a list of foods to avoid which I am trying, just to see what works but hopefully doc can give me some kind of meds as these a weird and no fun!

I totally sympathize! I'm really glad to hear the wine helped. Red wine is the complete wrong thing to drink for me. Funny how different we all are.

I know that balance thing you are speaking of. I feel it as dizziness but not vertigo. I've been clutching walls and doorways for months now to steady myself and fallen twice. This week it's been much better so maybe the riboflavin stuff is starting to work. I've been on it two weeks and it's supposed to take a month so I'm cheered by a small improvement even if I still feel crummy. I'm young for peri, but only two years off the age where my mom had hot flashes.

MWA Newbie

Please don't cry. Experience tells me it will make the pain much worse. :(

I'm SO sorry you're having to deal with this.

From the book Recognizing Celiac Disease..signs, symptoms, associated disorders & complications By Cleo J. Libonati..There's a strong link between Folic Acid deficiency and migraines. She recommends supplements, as it's hard to get enough from just eating foods with it if one is deficient. Maybe have someone pick some up for you?

The best type of folic acid for this situation, in my opinion, is 5-mthf. This type of folic acid is already broken down. This bypasses the mechanism that is broken in many people and causes them to go into deficiency. For these people, extra folic acid that is not broken down can cause high levels of circlulating folic acid in the blood. Not a good situation. You can find it on Amazon for, like $20. Also called L-methyl folate.

jeanzdyn Apprentice

I am having huge issues with migraines with a classic aura if that's what you mean. The aura lasts maybe 20 minutes and I get weird stuff in my vision. Jagged lines and bright patches. Then the migraine starts.

I have experienced this for many years. I called it 'flashing lights' but I now understand it to be the aura. It has lasted anywhere from a few minutes to over an hour, but I rarely had what I would consider a migraine, unless the aura lasted for over an hour. I can make the aura go away, but it takes quiet and some concentration too. This occurred from the mid-1980's until about 1993, when I started using a homeopathic remedy called 'iris versicolor'. Eventually I stopped needing the homeopathic remedy and forgot about the aura too.

Then in 2007 I started having the aura's again. I do not know what I did differently between 1993 and 2007 that the aura's went away.

I was diagnosed with Celiac's Disease in November of 2011. Fortunately the villi in my intestines are still mostly present, so this was discovered early. I have not been terribly ill, but the symptoms were becoming disruptive (which is why I had the colonoscopy).

Meanwhile, I do not experience the aura often, thankfully. I wonder if the iris versicolor would help others. The manufacturer was called Boiron and I think that their products are sold at Vitamin Shoppe stores and the vitaminshoppe.com website.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,166
    • Most Online (within 30 mins)
      7,748

    melindakathleen
    Newest Member
    melindakathleen
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • DAR girl
      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
    • Scott Adams
      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
    • Scott Adams
      PS - I think you meant this site, but I don't believe it has been updated in years: http://glutenfreedrugs.com/ so it is best to use: You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
×
×
  • Create New...