Neurology Visit

[Crystal11]

Well today was neurology. I am happy I was able to been seen earlier than next month. My main complaint was migraines and treatment. I was tired of going to the ER during severe migraine or not knowing how to help myself while at home. I was given a script for Fioreset which is Butalbitol, APAP and Caffeine mix. It helps out a lot! So I take that as needed/PRN now.

So, he asked the usual questions about my seizures and how many I have had. I told him that it seems to be doing better which I am happy about- but I can feel the Lamictal wearing off and that if I miss a dose or two, I start having problems again. I told him that I haven't had the "little ones" but still have a few "bigger ones" 1-2 times a month or so. I am very pleased that I hardly have little ones- makes my day less interrupted.

I told him in my interest in Lamictal XR 400mg- since to me it seems like it would work like my Keppra XR 3000mg. I can miss a few doses and don't have to worry about seizures coming through..
Anyway- so I got Lamictal XR and hope that I won't have any seizures or hardly at all. I was taking Lamotrigine and it is nice to be on a brand name med instead. I just don't do well with generics. You also don't know how much of the percentage the medication is. Some months can be a little lower or higher.

I have been told by my neuros that its going to be hard to get my seizures totally under control since I've had them since age 6 and they weren't properly treated for many years. So I am hoping that things go ever better now. I don't want surgery at all. So we didn't discuss it this appointment.

Do you guys ever notice a non-XR med run out of your system or feel like its worn off for the day?
If you miss a dose or two, do you have troubles easier? Or does it matter with the med of choice whether it is XR or not?
Just curious.

Take care
Crystal

 

[sandi]

neuro

Happy Day for you !

 

[Zoofemme]

Great to hear you got something more for your migraines Crystal...hopefully no more visits to the ER for you now

I definitely notice when it is time to take my meds in the morning...I'm twitichier, tremblier and a whole lot of other -ers, lol. Not so much at night but I'm usually so tired and already starting to doze off that it just isn't registering.

I will keep my fingers crossed that the Lamictal XR works the way you want it too as well

 

[Endless]

Hi, Crystal,

Good news on the migraines - I didn't know there were rescue meds other than imitrex (which doesn't help me, btw)

I'm not an an XR med. I take Trileptal 3x per day. I start feeling really weird about 2-3 hours before my next dose of the meds. The trileptal definitely wears off. I mentioned this to my neuro and he just upped my dosage. I still feel weird before my medication dose but not as bad as before. I have to take my medication right on time. Otherwise it provokes an aura and a seizure.

 

[Crystal11]

ZOOFEMME-
I was just about to write another post about the morning feels because this morning seemed to be the worst! I woke up and was shaking mildly in my hands and my whole body just felt worn out but I ate and took meds and am feeling better.
It seems when I am several hours off med time, this happens.. Interesting that you have this as well. I wasn't sure if there were others who deal with this too..

 

[Crystal11]

ENDLESS- yes there are rescue meds for migraines. My situation is I get a migraine w/aura about 1-2 a month. They just started flaring up last year and happened to have a 4 day migraine and had an ER trip about 1 week before going to the new neurologist. So it was clear to my neuro that this was happening and they started in college. Don't know why but its common for them to start about my age.
So the ER gave me Butalbital (50mg) APAP (375mg) mixed with Caffeine (40mg). Its one pill that you can take a few times a day as needed. But for me, I am now getting 10 pills a month from my neuro to help when a migraine starts up.
I was hoping to never have those happen. My Mom had them a few times.
Anyway- the best way to tolerate a migraine is to take a rescue med/pill as soon as you notice it- otherwise its hard to manage it. I asked neuro to talk to me about something that might be more appropriate for a migraine.
I take Trezix for pain of PHN due to severe Shingles outbreak on my arm.. boy that was so much pain and to me, worse than an absess tooth I had a few years ago..
Man..just the thought of it brings back memories of not being able to sleep or hardly dress myself..

Anyway, if you have migraines that aren't really controlled with a daily medication, you might ask about something that is PRN that you take as soon as you know a migraine is coming on.
But for some people, they have them more frequently that a preventative is necessary.
Please take care
Crystal

 

[Endless]

Wow. Wish I would have known that a few years ago. I had a migraine almost every day. All I had for them was Imitrex which didn't work. It was before I knew I have epilepsy and that my migraines are postictal. Now my seizures are much better under control and the migraines are rare.

My record for a migraine was 3 solid weeks all day every day without relief, with pain so intense I considered something we aren't allowed to talk about in here. And yet it never even occured to me to go the ER. Nothing occured to me - I just suffered. I saw a neurologist and she knew about the migraines, too, and did nothing. But then again this was the same neurologist who told me my seizures were menapause. Totally incompetent.

Well, maybe someone else with migraines will come in here and read your post and know what to ask their doc for. Thanks for letting folks know about it.

 

[Crystal11]

ENDLESS-
I am sorry to hear that you went through so much with your migraines! I was disappointed that I was diagnosed with Migraines with auras- because Epilepsy is enough for me..
Honestly, I would rather have a complex partial than deal with a migraines that makes me so so sick and uncomfortable.
When I was diagnosed by my neuro, on my first visit, he didn't prescribe anything and I think that is because I am on anti-convulsants (Keppra XR, Lamictal and Tegretol XR). Those can be used for migraines or pain.
Anyway- I am taking Keppra XR, Lamctal XR, Propranolol (heart condition) and two allergy medications- its a lot! But I now have two rescue medications for pain (migraines and PHN pain) Trezix and Butalbital. The Propranolol is used to stop my heart from going too fast for no reason, or skip beats everything 3 beats which hurts.. Because Propranolol is a beta-blocker, it lowers blood pressure even though mine is normal. But because migraines increase blood pressure the Propranolol/Inderal lowers blood pressure and makes the migraine less painful.
So I think that the medication that I was on, the neuro thought it would help. I'm sure it did somewhat, but to get so sick like I did last time just wasn't happening again and I was pissed..

So this time, I asked to be seen earlier. I told him the situation and the things I've done including two ER trips with oxygen treatment w/Phenergan shot pill got nausea in the ambulance.
I think if you mention to your doctor that you've tried everything you know to do, including E.R. trip, that it will be known that nothing you have done for yourself is working and you don't know what else to do.
I said "I am taking Trezix for PHN pain of Zoster outbrake/Shingles and I use that medication very limited for the pain because that is the only thing I know to do AND I don't want to make E.R. trips every time I have a seizure or migraine. The last trip was because of a seizure earlier in the day followed by a migrain that required a shot, which I was allergic to- not cool.

Anyway, make it known to neuro that you have tried everything you know and wish to know more about self treatment, alternative treatment, other medications more specific to migraines etc. Trezix does help with migraine pain because its an analgesic (bad spelling) and it works the same as most rescue pain med.
But I thought I would ask which is more appropriate for onset of migraine pain.

Take care
Crystal

 

[Endless]

Wow, crystal. I'm so sorry you all those things going on. You have so many meds - how do you keep them all straight? Like which ones to take regularly, which are rescue, and when? Do you have a special system?

 

[daisy.girl]

crystal....so glad to hear the fioricet works for you, it never did for me. I suffer with frequent migraines 2-4 per week, but like endless, believe they may be seizures or postictal. I am fairly new to the the seizure meds and I am praying that when they get to theraputic levels that my migraines will decrease.
endless....I have been on atleast 10 different recuse migraine meds and about the same amount of preventatives to no avail!!! that is why I am so hoping and praying that they are part of my seizures.
Glad you had a good visit

 

[henhouse]

Avoiding "withdrawals"

I take medication 2X per day. Before I got to sleep (9:30 pm) and mid-morning (9:30 am). If I go too long between doses, even an hour or two, I can feel a "withdrawal" symptom. So, I don't miss doses, the trick is to always have the meds on hand.
I used to have partial complex sz every 4 - 6 weeks (sz free 1 1/2 yr now)that would last for a day. The follow up migraines might go on for a week. The strangest thing, and it was totally coincidental, was that my sz were bunched on weekends or vacation trips, which meant migraine recovery time was often work time.
I was content with the one day partial complez sz every 4 - 6 weeks with the follow-up migraines. So was my previous Epileptoligist. Then I had to switch Drs. because of a health plan change. My new (current) Dr. made it clear that, although it was my choice, his preference was to change my medication in an effort to stop the seizures. For about 6 - 8 months, sz were essentially one day every 8 weeks, very severe with wicked follow-up migraines. The last one, 1 1/2 years ago, was a doozy. Overnight in a hotel with my wife and kids, ages 12 and 10. My wife was holding me back from getting to the bathroom out of fear I would leave the room. I couldn't communicate at all. I do remember the kids were watching, stricken with fear.
They have since stopped. I have had two small medication reductions. I feel positive about the future.
Go for it. Get 'em under control.

 

[Endless]

Hi, Henhouse,

I have almost no migraines now. Only one in the last month, and it was definitely postictal. I know all the migraines over the years were from the seizures because when the seizures went away, so did the migraines. Topamax doesn't help prevent seizures, so it couldn't be the meds. So there is hope!

 

[Sourgrape]

I don't know for you but I have a nice huge bottle of fioricet I still occasionally get hammered enough by a migraine to land in the ER. My fioricet doesn't always keep it down enough. Have you asked about any triptans you could take as injection for backup? (imitrex, maxalt) Keep in mind they do have a relatively high occurence for uncontrolled vomiting. I can't take them myself I vomit for hours after using them. Other good ones are tramadol(non-narcotic and no acetomenephine in it) and any high end narcotic with acetomenaphine. However I would talk to your doc about some backup meds in some small quantities. It's cheaper to keep a bottle of tramadol and oxycotin around than hit up the ER once every year or two.

Also try chugging a gatorade(32oz) every time you feel a migraine comming on when you take your fioricet. The electrolytes and water will help you out if you are dehydrated.

 

[Sourgrape]

If you are having any horrible sluggish feeling, fatigue, or an increased ability to fall asleep make sure you talk to your doctor. I've taken it before it screwed me over horribly. I'm going into into either toxicology or pharmacology when I restart school in the fall. Every pharmacologist I've talked to was surprised I was on Inderal....it's nickname is the zombie drug. It's sexual side effects were horrible.

 

[henhouse]

Take meds, and on time

Someone famous once said "It is not enough to think, you must think of something." If I may paraphrase for this thread, "It is not enough to have your prescription for medication, you must have your medication on hand and take it on time."
My sz were initially stopped with lamictal and keppra. They came back when I went off keppra. When I went back on keppra, the sz were better, but did not go away. I went, I think, to lamictal and depakote, I think the sz went from every 4 - 6 weeks to every eights weeks. Then, I think, I went to depakote and keppra, and had a few more sz; but they have since stopped. My Dr. says the depakote is "carrying the load", my wife thinks the keppra is more important. I have had my depakote reduced on my last two appointments.
There was always some element of lack of sleep that went with my sz. This week my wife and kids are at Disneyland. Last night I had a light "dinner" before 6 pm. Drove my shaggy dog to the off-leash park by the Willamette River (my OES went in up to his tummy in the water - will have a towel ready if I take him back tonight). Went home and read some of Patrick McEnroe's book (he was US Davis Cup team captain when we beat Russia in Portland in 2007). Took my meds about 9:30 pm, read a little more, to sleep at 10:00 pm, slept until about 7:30 a.m. At work by 9:00 this morning. Am ready to go home now. This is one restful week for me! I hope I don't sound crotchety when I says it beats standing in lines at Disneyland.
I wish the best for you all! If your current meds aren't getting it done, I hope your doctor will explore different meds. That's what mine did. Medication seems to = tired, or tire more easily, and lethargic. Make it a goal to first take care of yourself; get your rest, then give your best for as long as you can.
Also, I generally take my meds with V-8 or tomato juice, in a small Dixie cup. The taste or the crushed cup (ok not earth-friendly) remind me I already took it.