Migraine

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,
Welcome to the Forum. You've come to the right place. I don't have the kind of migraines you get but I can understand how frustrating it can be. Sure sounds scary.

The people here are great for support. I'm sure one of the moderators will be along shortly to give you links to more information.

We are all here for you.

Welcome to MyMigraineConnection, Debbie.

We're glad you found us too. I posted some information about Basilar-Type Migraine and Migraine specialists in the other post you wrote, so I won't repeat it here

This is a great community full of caring, compassionate people. Let us know how we can help you further.

Welcome, Debbie. You are definitely NOT crazy, and most definitely NOT alone.

Nancy mentioned she gave you some links in one of your other posts, but I'll give you this one here as well

Learning About Migraines and Headaches - Where To Start

Rest assured that you are in the best possible place for information, help and support! We are happy to have you here, so take a look around. Let us know how we can help.

I think I welcomed you on the other thread, but I'll say hello again here! No, you are definitely not alone.

Thank you all for the welcome, I got tears just reading the posts. It is so hard when you just have no idea as to where to turn. I was wondering if after a really bad episode any of you have issues with waking up soaking wet with sweat. I have been trying the trigger foods one day at a time but afterwards am wiped out for days and then feel like I am drugged afterward. The depression has set in and I live in an area where there seems to be no support. (Thank God again for you all) My Doctor seems less than helpful and put out that I called him yesterday (for the first time) and asked if he could put me on Topamax. I haven't been able to get to the pharmacy to get it because I am scared to drive with how I am feeling. Unfortunately I live about 15 miles from the nearest town. I have always been a pretty independent person and hate having to depend on people to do things for me. I know it sounds whiny as all of you are dealing with all of this and more. I just don't know which way is up. Thank you all again for the support and I am sorry for the dual posts but yesterday the mind was not working and I couldn't figure out how to post except on a reply. Debbie

Welcome to the forum family Debbie

I'm so glad you found us!! You're never alone, we are always here for you.

I know what it's like to have co-workers, family and friends who don't understand what it's like to have a migraine. This is a great article for them to read:

Migraine Education for Those "Who Don't Get It"

I look forward to seeing you around the forum!

Welcome to the forum Debbie--

I can understand what it's like to be out in the country and feel isolated, since I live in the boondocks too. Luckily I have my DH around most of the time, but there are times when I've been alone and feeling like there's nobody to turn to in an emergency. DH used to be in the air force and would be gone for a month a time. Whenever you're feeling down, you can depend on your forum family.

The best thing you can do for yourself is get educated about your disease which it sounds like you're doing. Many doctors are "less than helpful". If yours is a bad fit, maybe you should see if you can find a headache specialist.

Remember, we're here for you.

Tracie

Nancy said she posted our list of patient-recommended migraine specialists in your other thread, so I won't add it again here. If you have basilar migraines, you really need to see a migraine specialist. Doctors other than migraine specialists may never have seen another case of basilar migraines. Many of our members travel long distances, even by air, to see their specialists.

If you need further encouragement to move on to a different doctor, try this quiz:

Is Your Doctor Right for You?

I do understand that it can be hard to "fire" your doctor and move on, but let us be your support in that process. It is one of the most important things you can do for yourself.

Take care.

Debbie,

I wanted to send you a quick welcome and hello. I don't have time at the moment to say all I would like to about the basilar stuff (have to go do some parenting stuff) - but I have basilar migraine and familial hemiplegic migraine, and believe me, I've been there!

You're not crazy. The symptoms are weird and hard to manage, but it can get tons better. Keep poking around this site to find information, but rest assured that your treatment will get better with proper diagnosis AND with a doctor who has treated basilar migraine. Doctors with no experience with basilar migraine generally don't treat aggressively enough and just plain aren't up on the research.

More later. Welcome. Good luck. You'll get better results in the future. Some of the solutions will be a lot easier than you think!

Lynne

P.S. Consider a Medic Alert bracelet right away if you've been passing out. Also, I get the sweats too. Basilar migraines pass through the brainstem, which regulates a bunch of stuff like heart rate, temperature regulation, balance - stuff we don't have control over. In fact, just last night I woke up flailing about, soaked in sweat, and so dizzy I couldn't stand up. It's not that unusual. Just your brainstem running amok.

P.P.S. Ask for help! Will your pharmacy deliver? Do you have any social services? Put your pride in your pocket and beg. I know what it's like to want to take care of it all yourself, but I also know that I made my first year of the illness worse than it needed to be because I kept trying to do things by myself that were impossible. Most kind people want to do something. It will make them feel good too.

Gosh, I guess I did have time for more than I thought. My heart goes out to you. Hang in there.

Debbie,

Hello and welcome! You are absolutely not alone. Make yourself comfy and let us know how we can help.

Welcome again!