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Unread 05-12-2008, 07:24 PM   #1
dkcw1212
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Confused Complex Migraines and Seizures

Hi Everyone
I am new here, but not new to the pain of migraines. I was diagnosed with them at the age of seven and they have continuesly gotten worse over the years until I finally had a TIA and now on disability Severe Chronic Migraines with Disassociations/ Altered Mental Status. This also means that I have Complex Migraines which means that I already have vision loss, weakness and or paralysis of one side, inablity to talk and sometimes find words, as well as memory loss. The altered status usually appearce at this point, and even though I seem functional, I look spacey, drunk, stumbling, and often obnoxious, or have the mental status of a young child. I have come to learn to live with these severe migraines, but this last weekend, I had a seizure with one of my migraines. Has anyone else this? I would love any info that anyone has.
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Unread 05-17-2008, 02:57 PM   #2
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Welcome to our headache forum Denise and welcome to Neurotalk.

Migraines are strange disorders, I will admit that. I have suffered from them since I was in my early twenties and have had all sorts of symptoms but can't say I have had a TIA. I do have MS and have had one bout of seizures associated with this wonderful disease so can relate to the seizure issue.

I have been through every medication, therapy and combinations of both to try to get a handle on them and after giving up and learning to just deal with them, my neurologist put me on Topamax. It doesn't work for everyone, but it certainly has for me.

I hope someone else in the forum can answer your TIA/Migraine question but in the meantime, check out the sticky at the top of the forum for some related links with information. Maybe there is something useful.

If you come across some helpful information, please pass it along so I (or one of the other moderators) can add it to the list.

Would you mind sharing what type of medication you are currently taking to control your migraines? Any dietary controls?

Nice to meet you and I hope you find some relief.
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“When everything seems to be going against you, remember that the airplane takes off against the wind, not with it.” - Henry Ford
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Unread 05-17-2008, 04:46 PM   #3
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Hi Denise "Complex" is certainly the correct word to describe migraines .... maybe "Miserable" would be just as good?
I didn't have a headache in my life until sometime in my mid 40s when I started having nasty, hideous pains in my left temple and above/behind my left eye. And I started having funny "spells" ..... oh, well, too long to describe.

Finally in 1991 I had a massive grand mal seizure and was diagnosed as having epilepsy (and later migraine headaches) with partial complex seizures.
In 2005 it was finally discovered that the seizures were caused by a brain tumor (!) and it was removed in 2006 - another surgery 2007 stopped the seizures but not the migraines.

I've seen a lot of neuros, a lot of all sorts of doctors and not one has had anything to say about migraines or offered any hope of stopping them.

A brain tumor is no big deal but a migraine is.
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Unread 05-19-2008, 03:50 PM   #4
dkcw1212
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Confused Medication that is current - past ones too

I hope that the list doesn't scare any one....
AM - 2/Welbutrine, 1/thyroxine,2/Ridilin(40 mg), Concerta, and Kelp.
PM - 1/Welbutrine, 3/Ultram, 1/2Citaplopram,Ridilin(10mg), Serequil, & Prazosin.

My PRN's are Ultram, Midrin, Promethazine, Stadol, Tordol, Viseral,( the last two are IM), Indomicine, Chyl Hydr., Oxicontin, Baclophen, and a standing order at the ER for 200mg Demeral.

I think that is it, but I don't promise it every thing today.
In the past everything from asprine and No Doze, Beta Blockers, Calcium inhibitors, Ant seizure meds, Blood pressure meds, and the list goes on!

I would appreciate any ideas that have work or alternative medicine as well.

You don't feel like you live with migraines, you are dying with them.

Thank you for any suggestions you have.



Quote:
Originally Posted by Av8rgirl View Post
Welcome to our headache forum Denise and welcome to Neurotalk.

Migraines are strange disorders, I will admit that. I have suffered from them since I was in my early twenties and have had all sorts of symptoms but can't say I have had a TIA. I do have MS and have had one bout of seizures associated with this wonderful disease so can relate to the seizure issue.

I have been through every medication, therapy and combinations of both to try to get a handle on them and after giving up and learning to just deal with them, my neurologist put me on Topamax. It doesn't work for everyone, but it certainly has for me.

I hope someone else in the forum can answer your TIA/Migraine question but in the meantime, check out the sticky at the top of the forum for some related links with information. Maybe there is something useful.

If you come across some helpful information, please pass it along so I (or one of the other moderators) can add it to the list.

Would you mind sharing what type of medication you are currently taking to control your migraines? Any dietary controls?

Nice to meet you and I hope you find some relief.
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Unread 05-19-2008, 04:06 PM   #5
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Chat Look at this site

I get very tired of being looked like I'm a drug user and there is nothing I can do to change it...


Quote:
Originally Posted by Wren View Post
Hi Denise "Complex" is certainly the correct word to describe migraines .... maybe "Miserable" would be just as good?
I didn't have a headache in my life until sometime in my mid 40s when I started having nasty, hideous pains in my left temple and above/behind my left eye. And I started having funny "spells" ..... oh, well, too long to describe.

Finally in 1991 I had a massive grand mal seizure and was diagnosed as having epilepsy (and later migraine headaches) with partial complex seizures.
In 2005 it was finally discovered that the seizures were caused by a brain tumor (!) and it was removed in 2006 - another surgery 2007 stopped the seizures but not the migraines.

I've seen a lot of neuros, a lot of all sorts of doctors and not one has had anything to say about migraines or offered any hope of stopping them.

A brain tumor is no big deal but a migraine is.
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Unread 05-19-2008, 06:10 PM   #6
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Denise

You should see the list of meds I am on...your's doesn't scare me at all!

I started taking Topamax for my migraines in 2002 and it has been a life saver for me. Nothing else has ever worked. It's bad when you walk into the ER and the entire staff knows you by your first name and immediately puts you in a room! I discovered that vomit gets their attention quicker than blood!! LOL!

I actually drove myself to the ER once from school and they drugged me up, let me sleep for about 2 hours and then wouldn't let me drive myself home! How uncool was that! My husband was an airline pilot and on a 3-day trip...now how was I supposed to get home? I figured it out but it took me 2 more days to get my car home...silly people...geez, it was just a bunch of drugs!

Anyway, I know that "T" has worked very well for me and I've only had one breakthrough migraine and that was my fault thinking I could titrate down on the dose! I am on 200mg x 2. That's my dose...not more, not less. I also take 5 MeQs of Urocit-K to counteract the acidosis it causes and make sure I drink plenty of water (kidney stones is one of the side effects).

I hope you find some relief...if you want to try to "T", make darn sure you follow the titration closely because you will not be happy if you don't.
Start at night and up each dose at night.
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Dx: MS 2001 CRPS 2009




“When everything seems to be going against you, remember that the airplane takes off against the wind, not with it.” - Henry Ford
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Unread 05-19-2008, 10:46 PM   #7
dkcw1212
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I was on that for about 4 years, it seemed to help a little, but the side effects were so severe at the end, I almost lost half my foot because I didn't have any feeling in my extremities, and my nose, face, and cheeks....
The lists of what I've tried is endless, I'm depression isn't causing my migraines... Not feeling well is depressing.


Quote:
Originally Posted by Av8rgirl View Post
Denise

You should see the list of meds I am on...your's doesn't scare me at all!

I started taking Topamax for my migraines in 2002 and it has been a life saver for me. Nothing else has ever worked. It's bad when you walk into the ER and the entire staff knows you by your first name and immediately puts you in a room! I discovered that vomit gets their attention quicker than blood!! LOL!

I actually drove myself to the ER once from school and they drugged me up, let me sleep for about 2 hours and then wouldn't let me drive myself home! How uncool was that! My husband was an airline pilot and on a 3-day trip...now how was I supposed to get home? I figured it out but it took me 2 more days to get my car home...silly people...geez, it was just a bunch of drugs!

Anyway, I know that "T" has worked very well for me and I've only had one breakthrough migraine and that was my fault thinking I could titrate down on the dose! I am on 200mg x 2. That's my dose...not more, not less. I also take 5 MeQs of Urocit-K to counteract the acidosis it causes and make sure I drink plenty of water (kidney stones is one of the side effects).

I hope you find some relief...if you want to try to "T", make darn sure you follow the titration closely because you will not be happy if you don't.
Start at night and up each dose at night.
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Denise
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Unread 05-21-2008, 12:31 PM   #8
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Quote:
Originally Posted by dkcw1212 View Post
I was on that for about 4 years, it seemed to help a little, but the side effects were so severe at the end, I almost lost half my foot because I didn't have any feeling in my extremities, and my nose, face, and cheeks....
The lists of what I've tried is endless, I'm depression isn't causing my migraines... Not feeling well is depressing.

According to what I have read, and experienced, with Topamax, acidosis can cause the loss of feeling, tingling etc. That's why I am taking the Urocit-K. Once I started that, the sensations stopped and I got the feeling back in the side of my face. The drug depletes the potassium in your system. Having MS complicates it for me b/c I wasn't sure if it was the MS causing the symptoms or the drug. But once I started on the Urocit-K and started drinking a lot more water, I was ok.

I have a good neuro, thank goodness.

You are right, not feeling good can be depressing.
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“When everything seems to be going against you, remember that the airplane takes off against the wind, not with it.” - Henry Ford
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Unread 08-10-2008, 09:36 AM   #9
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Like Wren, I started having constant headaches ,then simple and complex seizures (which I might add were misdiagnosed for several years), until I finally had a grand mal seizure (at 6 mos. pregnant) that landed me in the ER.
An MRI told the doctors there was a cyst on my brain that had been there since birth. A year later and hundreds of seizures later (complex partial) with ever increasing headaches that just wouldn't seem to go away, I had another MRI at a different hospital and that 'cyst' turned out to be a brain tumor.
Here I am six years later and deal with constant almost daily migraines. I now take Topamax to help with the migraines (100mg 2x daily) and it helps dramatically. I also take Midrin when I get the breakthrough migraine- which seems to be a lot lately. I try to use Tylenol 8 hour (the only OTC that does ANYTHING at all for me albeit little)and when that doesn't work I crack out the Midrin as a last resort. Have to limit how many of those I take a day/week. What I'm wondering is if my Topamax dose is too low?
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Unread 08-14-2008, 06:42 PM   #10
dkcw1212
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Confused Seizurers picking up and No one will help

Three months ago I had never had a seizure and now I've had three in as many weeks . No one will see me and the I'm afraid to be alone. I have a list of twenty three drugs, seeing a chiropractor daily, and still getting worse.
At what point is all this worth it?
The pain is never ending anymore and what little bit of individual freedom I did have is gone.
Depression has taken up residents. I don't know where to turn.
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