Migraine

I have just been recently diagnosed with basilar migraines, after two years of being misdiagnosed and being treated very poorly by the healthcare industry. I was not aware there were even different types of migraines, let alone anything so serious! I figured migraine disorders were when people got really bad headaches sometimes...boy, I have alot to learn. I have lost conciousness on several occasions from this, was treated for seizures, yet all along it was a migraine disorder. Who would have thought! My migraines are triggered by weather changes, that I have noticed, and also lights, I cannot stand bright light! Since I am new to all of this, and trying to give myself a crash course, I was hoping someone out there had some insight or advice for me. I am on Topomax for right now, it will be awhile until I get to the therapuetic dose. Thanks in advance for all of your help!

Welcome Mydublin,

You have come the right place for information and support. This is a wonderful community and I don't know what I did without it. I do not have basilar migraines. But let me link you into the area of the site where you can gain more knowledge on migraines in general and basilar migrianes specifically Understanding migraines. This link is at the beginning of an area that provides inforamtion on the anatomy of a migraine, different types of migraines ajnd treatment information.

I hope this helps you get started. There are others on the site who do have basilar migaines who may have more specific information from their own experiences that I don't have.

Take care and again, welcome.

Cindy

Thank you for that information, I will definetly look into it! I should also add that along with the basilar migraines, he said I have Chronic daily headaches, and he is hoping the topomax breaks the cycle of those. I hope so. I live in TN, and it has rained all week, and today, my head is killing me! It really starts wearing you down psychologically after awhile! I am also on Relpax, and although it is a triptan drug, he said since I don't have the paralysis, it is safe for me, and it does work wonderfully.

Welcome.

In addition to Cindy's link, you might find this useful.

Basilar Migraines

I wanted to welcome you!

I was diagnosed, last December, w/ having Basilar Migraies.

I've lost consciousness, just like you - my first attack was the worst... I lost the ability to speak coherently... my balance was completely off - I could barely stumble around... very scary stuff. I didn't even know what month it was...

I'm seeing a new neurologist tomorrow, so - hopefully he'll find the right med. for me, because I now have very frequent migraine headaches - something I never really had before my first Basilar Migraine.

I tried Topamax for awhile, but that particular drug didn't help... it actually made me very manic (I'm bi-polar).

I then tried Lyrica, and that didn't help... it gave me suicidal thoughts...

I guess it all comes down to trial and error, w/ the medications... I know Topamax works wonders for some people, just not me.

I wish I knew what triggered my migraines... I've been keeping a headache journal for a few months, now - but there's still not really a pattern that's jumping out at me...

I wish you the best, and welcome!

Elizabeth

Thank you all for the warm welcomes. I am learning alot by just this site as well as the links provided. Now that I see the list of symptoms I can't help but wonder what took the doctors so long to diagnose me! I have been told I needed to see a shrink, that I have pseudoseizures, that I have vestibular disease, etc., and I get a new neurologist and he looks everything over and I get a diagnosis, and after a little research, it seems to fit me perfectly! I have progressively gotten worse over the years, so I am very hopeful that now that I have a diagnosis that I am on the right track. I hope the topomax works for me. All I can tell so far is I can't taste the carbonation in any sodas, which is a bummer, but hopefully worth it. I am tired of the daily headaches and migraines, and how to tell which is which is beyond me! I figure if I am dizzy and off balance, then it is a migraine. I have passed out at least once a month for almost two years, and every time I have really hurt myself, whether it be a concusion or major bruising or a gash here and there. I hope those days are over. Sometimes it seems like it is more than I can take! It is nice to know I can come here to this board and ask questions or even just vent, and people who actually understand what I am going thru are there for me. Thank you!

Welcome!

Everyone reacts differently to Topamax. There has always been a question whether I just have migraines (classic, basilar & hemiplegic) or have a seizure disorder as well (my EEGs have been abnormal with slowing in the temporal & frontal lobes, occasional sharps of theta w/increase in left temporal lobe, delta in frontal lobe, etc. but no clear eleptiform (??) stuff- if I understand correctly, seizures were "detected" but not "caught" in my last test, so I guess that means I don't have a seizure disorder?).

I find it all confusing, but anyway I had to stop Topamax because even though it stopped my morning (classic) migraines, it made my basilar migraines & hemiplegic migraines WORSE and more frequent. I also had numerous other side effects including intense sleepiness, frequent hallucinations, paresthesias, dysthesias, poor balance (many of which I still have), severe word recall issues & it made my breathing worse...since diagnosed with asthma & sleep apnea. I hope that doesn't scare you & hope that Topa works well for you...and that your doctor listens to to any new symptoms or side effects.

Do you have a migraine specialist? Does your doctor seem to be familiar with various migraine issues? There some info on this site about basilar migraines & Topamax that might help you (can't remember the links).

Welcome, we are so glad you found us! I'll bet it is a relief to be diagnosed and know what you have. I've been on topamax, and thus far have had no side effects except a loss of appetite. I really hope it works for you, and you can get out of the pain you have been in. Keep coming back to this forum and asking questions- there are so many people with a lot of knowledge and experience, and a lot of support. Looking forward to hearing from you!

Valerie

I don't think I've welcomed you yet, so welcome! We're glad to have you here. I have just regular migraines without aura, but they're daily at this point so I can sympathize with you. One way to help figure out the difference between a regular headache and a migraine is to try putting your head between your legs - if the pain gets worse, it's a migraine. Migraine pain typically gets worse with movement; regular tension-type headaches typically don't. This isn't 100% though, but it may give you a start.

I'll also point you here, since it looks like you haven't gotten this link yet.

Learning About Migraines and Headaches - Where To Start

Let us know how else we can help, ok? And welcome again!

Welcome, and I'm glad you're here.

My main diagnosis is familal hemiplegic migraine, but I also have basilar migraines. My father has had basilar migraines all his life, and has been misdiagnosed for most of it. I bet it's a relief to finally get a diagnosis.

You're probably in for a bunch of trial and error treatment until you get a regimen that works for you. You're going to need some patience there!

I have a few practical suggestions based on my and my father's experience, that you can discuss with your doctor, if this will help.

1. Get a medic alert bracelet and wear it all the time. If you lose consciousness it will be very helpful.

2. It is well worth making sure that you have emergency medications specifically for treating dizziness and nausea, since if those escalate, you get into trouble quickly ... There is no reason you can't add meds on top of the Relpax.

3. I use Klonopin daily to keep my central nervous system dizziness at bay and my nausea under control. Yes, it's addictive, but if you're a compliant and responsible patient, it's one of the best agents for treating central nervous system dizziness.

4. Stay hydrated all the time. It really makes a difference when the episodes come on.

5. I had a doctor explain to me once that the only special thing about basilar migraines are the degree of the spread of the aura. You can read more about this when you have the time, but basically anyone with migraine aura has some part of the brain that is shutting down (related to neurotransmitters) temporarily. The severity and the location of the aura just have to do with how far the shutdown travels through your brain. That's why you can feel the symptoms moving and shifting, and why you probably have a predictable patteren. It's just that your aura happens to move through the area at the base of your skull and wreak havoc there before it moves up.

Anyway, that's what I can come up with for now. Keep reading, make sure you're well informed, and ask for medication that will specifically address your symptoms. You have the right to be as pain-free and dizziness-free as you can be! This will settle down once you experiment with treatment regimens, now that the doctors finally got their acts together.

Lynne

P.S. And for goodness sakes, if you're falling and losing consciousness, you'd best get that bracelet soon! I hate the thought of you unconscious somewhere and the paramedics being puzzled ... Medic Alert has some really cute bracelets if you don't want to wear the boring functional one like I do.

Thanks Lynne, that was very helpful! You actually explained more than you think you did! As far as the medical bracelet is concerned, what should it say? I never thought about having to wear one before, but it is a great idea, would save alot in the er if I end up there. Thanks again!

I hope someone with more knowledge of medical alert bracelets can help you out in that area, since they often are a good idea for people with basilar migraines.

Another useful tool is these forms:

Emergency Migraine and Headache Care - Forms To Help

They help in the first place by reducing the amount of info you or someone else has to give when you aren't feeling well. Then, if the ER doctor is willing to look at the forms (not a certain thing), they let the ER staff know how your own doctor would like you treated. So take a look at them. You can take the physician form with you to an appointment and ask your doctor to complete it.

The MedicAlert people are great for helping you with the wording. I occasionally have stroke like symptoms and one of the "stock" wordings for me was "Migraine accompaniement - mimics stroke or TIA."

With the symptoms of your migraines, they should be listed and the MedicAlert people can help you if they don't have a stock phrase.

Also, list any drug allergies and any other condition you think is worth mentioning. The large size bracelet - the emblem, not wrist size - holds a lot.

Good luck. I think anyone with a major medical condition and/or multiple medications should have one.

I realize they can cost a bit more and that they have a $20 annual membership fee, but I totally recommend the actual MedicAlert medical IDs. No matter how many changes there are in your medical care, doctors, or meds, all you have to do is either call them or go to their site and update your info. If you can't speak for yourself, all of your info is one phone call away.

When you call them to order, they'll also help you decide what goes on the emblem and whether you need the large or small. They were a great help when I was doing mine.

Another reason I respect them so much is that MedicAlert is a nonprofit foundation. Whatever profits there are from people's memberships and purchase of their bracelet or whatever, the foundation uses to provide ID's and memberships at no charge for people who can't afford them.

Just my opinion.

quote:

Originally posted by mydublin:
Thanks Lynne, that was very helpful! You actually explained more than you think you did! As far as the medical bracelet is concerned, what should it say? I never thought about having to wear one before, but it is a great idea, would save alot in the er if I end up there. Thanks again!