Migraine

Hi Ladies,

It's been awhile, and an eventful absence it's been. In the time I have been gone I have seen the lovely lights of the ER at least 3 times and thankfully have had wonderful staff each time.

It seems those darn ER visits come at the most inconvenient times. 2 of those came while my husband was TDY in another state and his supervisor had to rush me to the ER and the one before that came while I was on a TDY at an AF Base about 4 hours from home. Fun stuff!

So to update all you lovely ladies, I have switched Neuros, passed two more classes (maintaining a 3.0) and am being weened of Topamax because it almost made me lose my vision. At first I thought it was helping me but then I started to get awful eye pain and one night I started having double vision and I heard what felt like a snap in my left eye. Ouch, boy did that hurt! The next day my husband took me to the Base Eye Dr (who happens to be a friend from Church and someone I trust) and he told me my eyes were good but the increased pressure was caused by the Topamax and he would send a letter with his findings to my Neurologist (at the time) and tell him I needed to be taken off that stuff. This was in early April.

I have since seen that Neurologist and not once did he mention the letter, meanwhile I am crying every day because of my eyes hurting so bad and my head pain is getting worse. My last ER visits came up with an abnormal CT and I have since switched Neurologists.

My new Neurologist is wonderful. He asked me how the Topamax was working for me and I listed about 9 side effects and he shook his head. Then my husband mentioned the big one "eye pain" and he got wide eyed and said "you're coming off that today!" I said "here's the bottle, you want the rest?" Of course he had to say no due to the risk of seizure and coming off so soon but he was very upset. We explained what happened with the eye doc and the letter that was sent, and he was mad. He explained given the severity of my symptoms and pain/pressure in my eye I was soon to lose my vision and that is irreversible.

I am on a pretty fast decreased titration schedule and come 3 June, I'll be off that stuff for good. Alas, the search for a preventative is still on

Moral of the story: If Topamax causes eye pain talk to your Neuro STAT! And always get a second opinion, your health and sight could depend on it!

I've been following up on MJ, I'm so glad you found a good Dr!


I hope you ladies are feeling better.

FXTX - Yikes and double yikes! What a scary thing! It makes me see red that the 1st neuro didn't respond to the letter about your eye! So glad you got good medical help in time! And your warning is well taken - we can't sit back and be polite when something like that is at stake!

- Megs

I'm so glad you found a new neuro who was smart enough to take you off of Topamax. It figures DH and then you were TDY when ER time came around. That's happened to me before. Thank goodness for caring friends.

Glad to see you posting again too! Stay in touch and keep us posted, k?

That is really scary! Thanks so much for letting us know about this!
I hope you find a preventive that works for you soon!

Valerie

Thanks for the update, and double thanks for the well wishes! I'm sorry to hear the Topa is treating you so poorly. I had a fairly nasty reaction to it at 75 mg - horrible moodiness, depression, anxiety, not to mention a whole host of other more "tolerable" side effects that were driving me nuts. So I'm taking 50 mg now. My new specialist sent me for some bloodwork to see if I need to decrease it further to 25 mg or if I can stay at 50 mg for now.

I am very glad to hear you're under the care of a better doctor. You're right that it's important to take your health seriously, especially when it comes to the side effects of drugs. I'm glad your new doc is taking you off the Topa.

Take care of yourself, and hope to see you posting around here some more!

What good actions and way to jump on this!

I am SO SORRY you're back on the hunt for preventatives though.

Glad you're hanging in there.

****LONG POST ALERT****

I'll try to break it down, hope it still flooooooows

Thanks ladies! I promise to check in more often and update every now and then. It's been a rough few weeks and I have been stuck by the Imitrex fairy more often than I'd like but I'll take a shot over an ER visit any day.

Coming off the Topamax has not been fun at all. I have had major anxiety and feel like a crack addict complete with shakes and insomnia. I'm not really sure if this is an accurate depiction since I've never done drugs but this is what I would imagine it to be. My new Neurologist has me on Lyrica for the anxiety, which I guess is also good since it's an anticonvulsant.

***THE APPOINTMENT***

As for my new Neurologist, he is truly a God send and my husband and I are very pleased! My first appt with him was scheduled for 2pm, 14 May. Of course I waited a bit longer but he got me in at 2:30 and we were out of there at almost 6:30pm.

My husband kept track of the time and he was IMPRESSED! The new Doc did an extensive exam (motor skills, cognitive, functional etc), discussed my history from the very start of my first attack in 2005, family stuff, preventative measures, went over CT results and MRI results with my husband and I, and answered ALL our questions! He went through 4 pens writing so much

***FINDINGS***

Due to our family history of aneurysms (sp?) and my Grandma's recent passing due to one he is having me checked and ordered an MRA. He is also having me checked for Epilepsy due to my Dad's history, Diabetes due to a STRONG family history on my Mom's side and Fahr's and Hypothyroid due to what was found on my CT.

I have also been diagnosed with Sensory and Nerve Damage which he suspects is due to the Topamax.

Considering my old Neuro just liked to give me pills and spent about 5 minutes per appt with me, and never even did blood work... I LOVE my new Dr! Not only is he a Neurologist but he is a well respected Neurosurgeon as well.

He even stayed late just for us! His staff had gone home and we were in his office laughing and having a good time. Hmmm...a Neuro who laughs? There's a novel concept

I was so happy I gave him a hug and told him I feel like I have hope again!! My husband shook his hand and thanked him profusely.

He told us he can't guarantee I won't have to take pills but he can promise to minimize my attacks and improve my quality of life. He also said if he can't find the answer, he'll make sure I get the help I need and he will never spend less than 30 minutes in any given appt.

***MORAL OF THIS STORY?***

Good Neurologists are out there, pardon... GOOD COMPETENT Neurologists ARE out there and you ARE worthy! Go find them!

Many pain free days to all! Big

I'm so excited for you, what wonderful news. Hang on, here comes the Happy Dance....Woooo Hoooo

OUTSTANDING news! Thanks for letting us know. Best of luck with this new guy. He sounds like a real treasure.

Gret
Gretchen in Mississippi

It's always great to hear good news! I'm so glad this new doctor is working for you- keep us posted!!

Valerie