I joined NeuroTalk for issues related to nerve pain in my leg. But since I also suffer from chronic migraines, figured I'd post here also.

I have had chronic migraines for years. They take on two forms:

1. Severe pain on one side (usually above one of my eyes); light and noise sensitivity; nausea (sometimes vomiting also). Essentially, I need to lay in a dark, quiet room and movement makes it hurt worse.

2. Same as above except that if I lay down, it hurts so much more. And whichever side I lie on (if I do lie down), the pain moves to that side (i.e. lay on my left side, headache is now on the left side; roll over to my right side, headache is now on the right side). Instead, I have to pace back and forth in a dark, quiet room, for hours, until it goes away. Luckily, this type isn't super common for me...once in a while I get these.

I'm allergic to triptans and I'm not supposed to take ibuprofen or aspirin (due to GI issues). I was getting botox injections once every 3 months, but after 2 years of that, I just couldn't handle them anymore (they hurt so much; I would have anxiety attacks, and during the procedure, I would get lightheaded and nauseous and break out in a cold sweat...surprised I didn't faint, tbh).

Recently, I was switched to Emgality, which seems to work about as well as the botox. Which means I still get about 2 migraines a week (I just had a pretty hellacious one today). I used to take Fioricet when I got migraines but insurance stopped covering that. Now I have Ubrelvy...and so far, every time I've taken Ubrelvy, it really hasn't helped. I took two today (one at the start and another a few hours later), and even then, it wasn't until 5 hours later that I could get up and start moving around. I still have the remnants of the migraine (still light / noise sensitive; the pain is about 90% gone though).

I am disappointed; was really hoping the Ubrelvy would work.

Edit to add my list of migraine triggers:
Dehydration
Missing a meal
Bright lights
Flashing lights (this includes sunlight flickering through trees when driving)
Fluorescent lights
Chocolate (in excess; dark chocolate especially)
Certain pitches / tones / alarms (Idk how to explain that one)
Stress
Strong smells (perfumes, colognes, lotions, citrus, etc)

Hello.....
I'm so sorry to hear you are suffering from really bad migraines. I hope you feel better soon!
I also suffer from migraines. I take Immitrex to help. Some of the symptoms you are describing I have also experienced, such as, light and noise sensitivity and pain behind or around one eye. The med and laying down in a dark room without noise is the only thing that helped me until I looked into it more. Prior to the that I never suffered with migraines or headaches. It began suddenly 5 years ago. I saw many different specialist and a neurologist at first thought I could have MS because of a few other unexplauned symptoms in combination.
After researching online I also learned it could be related to my sinuses. I began suffering with chronic sinusitis. I saw a ENT and he did a CT scan and noticed I had a deviated septuem which just so happens to be on the same area I would get migraines around my eye. I agreed to have surgery to fix the deviated septum, sinoplasty, tonsils and adenoids removed too. I can't begin to tell you a world of difference it made. Before surgery I was having a migraine almost every day and couldn't take the Immitrex as often as I was having them. After the sinus surgery, I may get a migraine once a month or every other month. I also had a allergy test done to see by chance if allergies could be playing a role. At first the test came back saying I was allergic to just about everything, including a food allergy. That didn't make any sense to me because the food the test said I was allergic to I eat all of the time. The doctor said it was a false positive test. You also mentioned having other stmptoms like when eating chocolate and having GI problems. This sounds like it could be a fungal infection in your GI. I can't remember the name of it iff the top of my head. I also researched this infection and looked at it being possibility. In combination with all your symptoms it tells me it could be this, but it could also be seperate and you may have sinus issues like I had and your GI may be seperate and not related. I hope some of this info helps you and hope you feel better very soon!

Best wishes,

Diamond Tiger<3

I had to go look up the fungal infection name. Its called Candida. From what I remember reading symptoms it sounds like it could be a possibility. As I had also mentioned earlier it sounds sinus related also. I hope this helps.

Best Wishes,

Diamond Tiger<3

I'm really glad that the surgery has helped decrease the frequency of your migraines. I would not wish migraines on my worst enemy, so the fact you got some relief from the migraines is wonderful!

I had my tonsils and adenoids removed when I was 11; prior to that, I used to get tonsilitis and strep throat frequently. And my sinuses, while on rare occasion they hurt, for the most part I don't have issues with them.

I recently had an allergy test (for environmental and food allergens) but mine came back with everything being negative.

The GI issues, I am pretty sure, just stem from when I had a pulmonary embolism about 10 years ago (they never determined the cause of the PE). I was on coumadin for over 6 months, and then they switched me to a baby aspirin a day. After six months of the baby aspirins, my esophagus was a mess. Now I have to get endoscopies every 2 years because of it.

I do know migraines run in my family. My mom, grandmother, and both my brothers have them. I just have them way more frequently than any of them do.

Imitrex has triptan in it, so it's one of the meds I, unfortunately, am unable to take, since I'm allergic to that ingredient. (Basically, my body hates me, haha). But I'm glad that it helps you, for when you get migraines.

I used to take Midrin, but it's no longer manufactured. And then I was taking Fioricet...until my insurance decided to stop paying for it. Hence the reason they gave me Ubrelvy recently. But...I've had to take it 3 times...and it didn't help really, for any of those migraines. I have a follow-up with the neurologist next month, so fingers crossed, there's something else for me to try.

I'm praying the neurologist will be able to help you. Before I had the surgery, my neurologist had put me on a medication on top of the Imitrex. Problem with that for me was, the medication was for people who have dementia. I just turned 40 in March and can assure you that I don't have dementia. My memory is sharp. Some would even call it photographic memory.
My neurologist had explained to me in the clinical trials not only did the meds help with dementia. But, it also showed to help people who suffer with migraines and headaches. Because of Imitrex only being prescribed as 8 pills a month. And, you couldn't take more than 2 in a week, it meant I couldn't take it almost every day when I was having migraines that often. Behind and around my eye made it bad that I would even wear a eye patch over the eye it was brhind knowing the migraine never impacted both eyes at any point, only one. I gave the dementia meds a try for a couple of months. It just didn't sit well with me. I knew there had to be something else that could be done, if only I remained determined to find it. The botox had crossed my mind at 1 point. I honestly didn't want to go that route. I don't want any kind of cosmetic surgery or treatment like botox. I want to remain natural as I am.
I thought of the Candida based on what you had explained. Many of your symptoms line up with that. Especially with the bad migraines and trouble with chocolate and smells.
I hope you feel better!

Best wishes,

Diamond Tiger<3

I meant to tell you the name of the medication my neurologist had prescribed to me that is a dementia medication but also treats migraines too. Its called Namenda and I can tell you it did work pretty well. I took this medication as part of a daily preventative rehiment for migraines. On the occasions I would get a migraine I took Immitrex and I know you said you can't take Immitrex. You might be able to take Namenda. Its something you can ask your doctor about. I hope you get some relef. Good luck!


Best wishes,

Diamond Tiger<3