Migraine

I haven't posted often on here, but I do lurk from time to time, and can't tell you all how much reading some of your information has helped me.
Updates....
I'm still on bromocriptine, as my endocrinologist was concerned that I may have a growth in my brain (small enough and in just the wrong spot that they can't find it on MRIs, but large enough and in just the wrong spot to be putting pressure on nerves) that was causing a huge spike in my prolactin levels (normal is 15-25, at one point I tested over 39). As of last Oct, levels are closer to normal (24, so still high, but "normal") and doc suggests I stay on the bromo, especially if I ever want to have kids.
I got rid of one neurologist they sent me to after she tried to put me on Cymbalta (#1 side effect headaches, #2 side effect insomnia, I'd had both for 6 months!, plus manufacturer's have a warning against giving it to someone with a specific medical history which, gee, guess what, I have, and she disregarded that).
Was pretty much fine (maybe 1-4 migraines per month, as opposed to daily) from last year late April to late August. Went on vacation (2 weeks of no contact with work, which has been highly stressful for the last 2 years), came back and was sick in bed with migraine for about 4 days. Finally went to my regular doc because I had to go to work and needed to try and be functional. He said he could give me Imitrex and send me home to sleep, or (something similar to Vicodin) and send me home to sleep. Asked for whichever would allow me to go to work, he asked if I was serious and then wrote a scrip for the painkiller. Told me to take 2 when I got home along with 800mg ibuprofen to try and break the headache cycle (I hadn't taken anything prior because I don't have *any*thing that will kick the headaches anymore), and if that didn't work, a couple hours later I could take another one and some more ibu. 3 painkillers + 1200mg ibu later, I was finally able to fall asleep, but it didn't get rid of the headache. Called dr back, he said he could send me to Mayo, or send me to a new neurologist in town that had trained at Mayo. First appt I could get was 6 weeks later. :P

So, I have a new neuro here in town. He looked at what the previous dr's had ordered as far as tests and was confused as to why some were ordered and others weren't. Before ordering more tests, he wanted to try 2 things. First, 5 days of high dose Prednisone to see if there was a physical swelling or something similar that could be relieved with the meds. That didn't work, so he started me on Amytriptaline (not sure I'm spelling that right). 10mg for 1st week, then up to 20mg after that. After about 3 days at 20mg, I was able to actually sleep thru the night (8 weeks of maybe 2 hrs of interrupted sleep per night - ish!) and was headache free.

Forward to just before this past Thanksgiving. I noticed that sometimes, shortly after eating meals, I'd get a horrid migraine that would last about 3 hours and then be mostly gone (just slight "hangover" after the main pain was gone). Started playing around with foods and discovered that garlic has a horrid effect on me, and pineapple isn't very nice either. (Hubby was horrified at the result of the experiment he suggested. On a day I felt great, he wanted me to try eating just a bit of garlic by itself, no other foods involved. Peeling it made my head tight, smelling it gave me a stabbing pain in my right eye, taking a *tiny* bite had me walking into walls when I tried to get into the bedroom to hide from light.) Have since discovered that I can handle very small amounts of fresh garlic if it is cooked for a while first. But, also found out (last night and tonight) that I can't tolerate garlic powder or garlic salt at all.

Mentioned both of those to the dr, including the fact that never before in my life have I had any sensitivity to anything. He's not interested in testing for anything, and his only suggestion is to simply avoid products with this stuff in them. I don't think he realizes how many foods that eliminates! Just about anything you buy (chicken cordon bleu and spaghetti sauce are the two most recent discoveries I've made) that has any seasoning in it will have garlic salt or garlic powder in them.

Still don't have a diagnosis as to why these migraines suddenly started about 4 yrs go. The docs scratch their heads over the garlic and pineapple. They are confused as to why it's worse Sept-April. They don't know what tests they should run to see if they can figure out why this is happening.

Hubby's worried about me. I try not to let him know when I'm not feeling well (I love him and with him worrying about so many other things, I hate to be one more burden for him), but sometimes there's no hiding it. I frequently feel like I'm not being a good wife to him, but don't know what to do. He lost his job about a month ago, so I can't afford to not work full-time or take sick time (boss doesn't approve much sick time use), so I come home absolutely wiped out and don't have the energy to give him the attention he deserves (and that I want to give to him).
I know I'm hitting a low point right now. I've hit another insomnia jag (last one lasted for 8 weeks, so far we're 2+ weeks into this one), work is more stressful than ever, and I'm having issues with some of the in-laws (SIL is being a royal witch and causing a lot of tension and hurt feelings but doesn't care).

Anyone have suggestions?

-Jane

Good Evening Jane,
I don't think we've met before. But I'm actually fairly new too. I guess it's a good thing you have found some food triggers. Garlic, that would be a tough one. I thought mushroom and red wine was bad. Right now with your DH not working perhaps it would be a good time to eat at home more. Does he like to or will he cook? He sounds very concerned about you and would be a way of helping you. Also it would be a more relaxing end to your day.

I have found with my DBF that I let him know if I don't feel well from a migraine, but that sometimes I just don't want to talk about it. I'll let him know if I need something, but otherwise, I just need usually peace and quiet. That was hard for him in the beginning, but he is beginning to understand it better now, but it did take awhile. He worries less this way, but I tell him what's going on so I'm being honest and open with him.

I don't have many food triggers. I also don't know if your are allergic to something means it would trigger a migraine. That might be the question for your doctor as to why he doesn't test for food allergies. Others may answer this post and be more knowledgable in this area.

Take care Jane,

Cindy

My sister is allergic to garlic, as is my dad, so you have my sympathies. Garlic really is in everything, but rest assured it is possible to completely avoid it. I'm on a rather strict diet myself these days (no gluten, dairy or artificial sweeteners; limited sugar and sodium) which means DBF and I cook most of our food from scratch. MSG is a trigger for me, and that is in almost all boxed or frozen or premade meals.

As for food allergies and food triggers, they are not the same thing. You can't really test for food triggers other than doing what you did - avoid a suspected trigger for a while and then reintroduce it - so testing for food allergies may be of limited use in determining your migraine triggers.

And your doc really may be right about avoiding your food triggers. There's not much that can be done about them. That's why DBF and I are cooking from scratch. However, some people become less sensitive to their triggers once their migraines are under control, so it is possible that avoiding garlic and pineapple may not be a "forever" thing for you.

We have more information about food triggers and a list of the most common ones HERE.

Thanks. I'll be doing some more hunting for information, and will be looking over the link posted too.

Just spent the last 2 days in the hospital. They're not sure what happened, so it's just take it easy, wait for MRI and EEG results and talk to drs tomorrow.
Basically, I was taking a shower and passed out. Hubby caught me, so I didn't hit the floor of the bathtub, but would have it he hadn't been there. Since I didn't start coming around right away, he got me dried off and moved to the bedroom. He watched me, but just let me be (apart from reminding me to breathe a couple times, I guess) for about 1/2 hr. After that, he forced me to wake up enough to get dressed, which he had to do, because my right side was dead - no strength at all! With that and the fact I was slurring my words and was so incredibly tired, he took me to the ER. Took about 4 hours for me to finally be feeling stronger and stop slurring, but the headache I had was miserable. So, admitted me overnight for observation and then the neurologists decided I should have the EEG and MRI. So..... That's where things sit today. :P No fun.

Hi Jane,

I hope you are feeling better now, Jane. How did your tests come back?

Migraine is a genetic neurologic disease that may be triggered, for some people, by certain foods, weather changes, dehyration and a host of other things. HEREis a list of potential food triggers you may find interesting.

May I suggest a Migraine specialis? I know you said you have a new neurologist, but he may not be an expert in Migraine disease and headache disorders. These doctors devote their entire practiceto treating patients with Migraine and headache, going to scientific conferences and taking courses in this field. We have a list of patient recommended doctors you can see by clicking HERE We don't have any doctors in ND, but there are members here who travel quite a distance to see their specialists.

Please keep us posted on how you are doing, ok?

Hi Nancy,
Thank you for the information, and I'll definitely be looking at the list of migraine specialists and see where we're able to go from here.

Tests came back today. CT scan, bloodwork and MRI came back clean, which means no stroke or something structurally defective with the brain. EEG did not. Since I was epileptic when I was younger (even though I've been off meds and doing fine for about 10 yrs), new diagnosis on this latest episode is that it was likely a seizure of some sort, though it could have been a complex migraine, though with the EEG results, they think it's more likely the seizure. But, they're not 100% sure. (lol... this is the closest smiley I could find to one rolling it's eyes with frustration) So, new meds added to the bromocriptine (for high prolactin) and amytriptaline (for insomnia and the headaches). Supposedly this med should take care of the abnormal brain waves and should be helpful for the headaches as well. Check back in 2 months, then 6 months with the neurologist. I see my regular dr in a couple hours, so we'll see if he has anything to add.

Anyone have opinions on drs at the Mayo Clinic for migraines? My regular dr has offered to send me down there, so if I have him do that, I'd like some names to suggest to him, if anyone has any.

-Jane

Better to choose the doctor than the clinic.

What about some kind of antiseizure medication? They are used for both, Migraine and epilepsy. And I'm not talking about just Topmamx. Here are a few:

carbamazepine, aka Tegretol clonazepam, Klonopin clorazepate, aka Tranxene divalproex, aka Depakote gabapentin, aka Neurontin levetiracetam, Keppra lamotrigine, aka Lamictal pregabalin, aka Lyrica oxcarbazepine, Trileptal tiagabine, aka Gabitril topiramate, aka Topamax valproate Sodium, aka Depacon zonisamide, aka Zonegran!

You can get a full list of potential preventives in our article Migraine Preventive Medications - Too Many Options To Give Up!

Please discuss abortives with your doctor before you take Imitrex again. Let us know how it goes, ok?

Good point about choosing the dr over the clinic. I guess with my family, they've always heard/said good things about Mayo (my grandma went there when she had brain cancer), but I'm open to any suggestions.

I've been on Topamax. Hated it, felt like I'd had a lobotomy! It didn't do a darn thing for the headaches, just made it so I didn't care or forgot that I had them.

The new med is Lamictal, so I'm happy to see that in the list you mentioned there.

I'm supposed to take it easy at work the next couple days and then get back to my regular dr if I have any questions/concerns, so will discuss abortives more with him then.

Thank you for the positive messages and the information! It's one reason I keep coming back here (even if I don't post that often). Everyone's always so helpful!

Thank you!
-Jane

As long as you keep coming back!!

Feel well, ok?

Welcome Jane!!!

I wasn't sure if I welcomed you or not when you first posted.

Don't be a lurker!!! Be a poster!! (a poster??) Well, you know what I mean!!! LOL

We love getting to know people around here!!

Looks like Nancy already got ya going with some info, so I'm just saying hi for now...

Give us a shout more often!!

Welcome again!

Hey Jane,

How are you doing?

Hi Nancy,
Well, on one hand I'm feeling ok, but on the other, yesterday I had two milder repeats of what happened last week. I wish I could understand what is going on. The first one, I was simply walking (slowly!) up the stairs at work and had to sit or fall when I was about halfway up. The second time, I was in the frame shop carrying a single frame (light weight) and shifting it to a different table. Neither one of those should have stressed my systems, but apparently they did somehow. I keep a notebook in my work-apron pocket at work and after yesterday I keep contact info (including my docs) in there. I'll be keeping a record of what happens at work in there as well.
Just frustrating. They put me on a med that is supposed to stop any siezure activity in my brain (granted, I do have to titrate up the dose he wants me on, but you'd think even a low dose would do more) and this still happens.
Hubby's worrying, mostly about me, but also about bills, since he's still out of work. We're both hoping that I don't have to go back in until the next appt I have in 2 months. But, we're also not going to let things slide with my health either.
I need a day where he and I can sit and look at options and brainstorm as to what our next step should be. I'm going to have him read some of the information everyone on here has shared (which gets a huge from me!).

Have to run. I'm expected at work soon.
-Jane

Hi Everyone, I am new to the site and thanking God I found this. I have thought I was going crazy. Now I see there are others out there just like me. I have been diagnosed with Basilar Migraines after so many tests and so much money, I have had CAT scan, MRI, EEG, EKG, Blood work galore, Urine test and a holter monitor for 2 days. When the Neurologist told me what I had I truly just thought it was an excuse for not finding out what was wrong.

I am 48 and about the middle of January I started having these debilitating headaches (have always had migraines but they never felt like this) I would feel dizzy, my ears would ring, I would see sparkles and then eventually pass out. When I was passed out I would stop breathing and afterward I have little memory of what went on. Has anyone else started having these at my age? Or at least never had them and then start for no reason?

Anyway, the dr gave me no information on this type of migraine, told me to go look it up on the internet, I was classic. He started me on Propranolol and some pain meds and handed me a diet of food triggers. I started the Propranolol and after about a week it made me feel like I was losing my mind, I felt so shaky inside and I had no relief. I went off from it and have called him to see if he can put me on something else. I also want to try the herbs I have seen on some of the sites (anyone have any experience with this?)I have an awesome dbf that has been so supportive of me which is wonderful, work is another thing.

I have also started working on figuring out trigger foods. On Sunday I ate Lasagna, NEVER again. I passed out 3 times, got a terrific headache, nausea, and then the worst, I couldnt talk. I never would have believed migraines could do this!!! (of course since then my dbf tells me whenever I get talking too much he is going to give me some lasagna) I am getting depressed with the lack of foods that aren't triggers, my triggers so far are of course my favorites. Aged Cheese, Peanut Butter, Some beef, some breads etc. The thing I have the hardest time with is like today, after a bad episode it is so hard to think straight, talk right, feeling really weak.

I have passed out at work and need my job but they are having a hard time understanding that this is ongoing and I am not able to take a pill and it go away. I do understand their position, but I need my job. I am petrified of losing my drivers license but in the same sense know I can be a danger on the road. I know alot of this might not make sense, because I am in a post headache time, but I felt like a ton was lifted off my shoulders when I found this forum....I hate anyone has to go through this but I am sitting here in tears thankful someone has insight as to how I feel. Again I apologize this is garbled but it took me an hour to write and I just needed a shoulder right now. Any suggestions would be so very, very welcomed..... Debbie

Hi Debbie,

I know you're not feeling yourself, but when you are feeling better, will you break your posts up for us? They are hard to read in on long paragraph form, and I don't want to miss any important details!

Basilar-Type Migraine, BTM, is a Migraine with aura symptoms starting from the brainstem, affecting both sides of the brain, at the same time, but has no motor weakness. We have an article on them you can read here:Basilar-Type Migraine - The Basics

I bet you know this already, but with this type of Migraine the best doctor to work with is an expert, a Migraine specialist. You can see our patient recommended lists HERE.

Keep us posted on how you are feeling.

Hi, Debbie, welcome to the forum. We're glad you found us.

Some supplements such as vitamins and minerals are used as migraine preventives. Most people find those supplements alone are not enough to control their migraines. There are many options, and you and your doctor should be able to find an option that you could tolerate, and that would help you. See this list:

Migraine Preventive Medications - Too Many Options To Give Up!

Take care of yourself, and good luck with your migraine management. It takes a lot of patience to find a good regimen.