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Going for my 1st visit with a Neurologist ever...(LONG)

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Posted 7/30/2006 8:19 PM (GMT 0)
I'm going for my first visit ever on August 16th. I had to leave my normal family Dr., because he just refused to refer me. But thats another story in itself.

I'm 25 years old, and my migraines started about 3 years ago. I got up one morning and nearly passed out from the pain, nausea, sounds, light, all were devastating. It scared me to death, so I immediately called my normal physician. I told him my story, and he just smiled and said that I just described a migraine to him. He explained some things to me and I was given some samples of Relpax. I was told to take them immediately when I had a migraine. Months went by, maybe a year, and everything was o.k. Then the migraines became more frequent so I went back to my physician. I was then prescribed Innopran(beta blocker) 80mg daily. This is where everything went downhill. I have become useless, I have no energy, I sweat taking out the garbage, and I lost my job due to terrible performance.

One the upside, I only have a migraine maybe once a month. The reason for the betablocker was because I couldn't function after taking a few relpax, and look at me now ! Anyways, I changed Docs and went for my first visit last week and he immediately refered me to a neurologist. :-)

Finally, maybe I can get out of this slump. I have Aura terribly, daily, sometimes for hours on end. I see golden showers, and just feel numb, sometimes even like I'm going to pass out(just confusion), but I never do. All of this never with a headache. Is this normal ? Anyways thanks for reading this, and if anyone has any comments or suggestions for me to ask my neurolgist let me know. I have no idea what he's going to suggest or say. Hate to say it, but I'm almost excited to be going to the DR. cool

Posted 7/30/2006 9:15 PM (GMT 0)
Hi Brad,

Welcome to Healing Well. Just a suggestion, but to keep a diary of what happens with your headaches can give the Doctor a reality check on what is going on with you, even over this next few weeks until you see the neurologist would be helpful!

You will probably find the Neuro will ask lots of questions, just answer them as best you can and do not be intimidated by them, they do this to give them as clear a picture of what is going on as possible. Take with you as much information as you can about your headaches, write a list of things if that helps, cos you are bound to forget something when you get there we all do!! lol

Please let us know how you get on, take care Ann
Posted 8/16/2006 8:34 PM (GMT 0)
UPDATE

Well I went to the doctor this morning. He's changing all my meds. I currently take 80mg of Innopran XL daily, and Relpax for a migraine when they occur.

He prescribed Topomax 2 times daily, and Inderal (spelling?) instead of the Innopran.

Also tomorrow I go in for an EEG (whatever that is).

And Saturday morning I'm scheduled for an MRI nad an MRA.

So this is sad to say, but I'm excited, maybe I'll get somewhere this time.

Got my fingers crossed that the insurance company will pay !

Any idea how long these procedures will take ?

I really don't even know exactly what an EEG is.

Posted 8/16/2006 9:09 PM (GMT 0)
Good luck with the new meds. You might want to read up on some of the earlier threads on Topamax. Lots of people have unpleasant cogitive side effects, especially at first until they get used to their dosage. I'm surprised your neurologist started you on it twice a day -- don't be afraid to call him/her to see about cutting back to once a day if the side effects are bothering you. Most people adjust to the medicine and can then increase their dosage until they reach an effective level, but as lots of posters on this board have made clear, many others simply can't tolerate Topamax. I've avoided the cognitive side effects, but am suffering from kidney stones now that I'm up to a dose of 175 mgs/day, which we're trying to manage through mineral supplements.

Despite my kidney stones (and they are no fun, I promise you!!!), I'm a big fan of Topamax. After 18 years of almost daily headaches, it's the first thing to provide substantive relief. It did take nearly 4 months before that relief kicked in for me, so be patient. And if you need to, go slowly on upping your dosage -- you're messing with brain chemistry here, so give your body some time to adjust!!

My other piece of advice, again based on those 18 years of headache fun, is be patient. Like you, my headaches started overnight. Woke up one morning with a headache and it's been there ever since. However, I've finally come to realize that they aren't going away in a similar fashion. I used to have an informal "30 day rule" for therapies -- I'd give a drug or alternative therapy about a month before I'd give up on it. As I mentioned, Topamax took 4 months to have an effect. If the early side effects had been miserable, I'm sure I wouldn't have given it that long, but sometimes it takes our bodies a while to adjust and respond to things we do to it.

Good luck!

Mark
Posted 8/16/2006 9:57 PM (GMT 0)
may be of help to some of you .I found a thing called migracap,a hat with gel in it you put it in the fridge ready to use at any time,it takes the pain away.just type in migracap and you will see where you can puchase one,just try something really cold first and you will see what I mean.the caps stay cold for quite a while and they keep out the light.hope it will help some of you.

Posted 8/16/2006 10:14 PM (GMT 0)
Hi Brad,

Glad you have seen your Neuro. He certainly seems to be taking you very seriously and is giving you a thorough check-up. An EEG is just a measurement of your brainwave activity, just electrodes on your head to measure this, you shouldn't feel anything more than the feeling of the electrodes sitting on your head - a bit like something being taped to your head! I don't know how long that would take.

The MRI will only take 15-20 mins, I am not sure about the MRA probably a similar time. I wish you all the best. Keep in touch as to how you get on.

take care Ann
Posted 8/17/2006 2:33 AM (GMT 0)

 Thanks guys. I have read some of the stories about Topomax, and have to say, I am a little nervous. Oh well, it's worth a shot.

Annuk, my understanding is that the MRA is happening at the same time as the MRI.

On the downside, it's going to be 2 weeks before I see the Dr. again to go over the results with me. mad

Later,

Brad

Posted 8/17/2006 4:42 AM (GMT 0)
Just wanted to say that I had great success with Topamax but had to stop it b/ of Kidney Stones. I also felt really dumb a lot, and since stopping it my "mental sharpness" had got back to to normal. You may have no side-effects, so don't be scarred. Your doc. is doing test to just rule out things. Most likely they will be "normal" and you will just have to join the club of us migraineurs. Its good though he's doing the test, to be sure. Most of us here have had them, they aren't bad and not too time consuming. Best of luck to you. I'm sorry you too have to suffer from these things.
Posted 8/23/2006 6:59 PM (GMT 0)

 Just found out that I have a tumor.Its in the left ventricle looks to be benign, but we'll see. Appears to be about the size of a tennis ball. sad My neurologist is sending me to a neuro surgeon in the morning so I'll keep you updated.

VERY NERVOUS AT THE MOMENT.....

Posted 8/23/2006 7:53 PM (GMT 0)
I am so sorry. I will pray for you. May God Bless you. I'm so glad your doctor did the test. Man, I'm sorry.
Posted 8/23/2006 8:10 PM (GMT 0)
Its upseting, but it's also soothing. I'm trying to look on the bright side of things. At least now I know why. I just want to get it all over with, and get on with life.

Thanks for you concern.

Posted 8/23/2006 10:17 PM (GMT 0)

For anyone thats interested its called INTRAVENTRICULAR MENINGIOMAS.

What a mouthful.

Posted 8/25/2006 9:49 PM (GMT 0)
Brad, I am so sorry that you have this tumour, please let us know how you get on and what you are having done and when!! - I am waiting now myself to go in for some tests on my pituitary as it is possible that there is a tumour causing my probs too!! Mine will only be a little one if I have it!

You will be in my thoughts and prayers, take care

Ann
Posted 8/26/2006 3:45 AM (GMT 0)
Thanks, I'm having it removed on Sept.8. Projected to be an 8 hour surgery, and I'll probably be in the hospital for a week. mad

I'm am so scared, I don't know what to do !

Its on my left, and there making there "Cuts" so to speak behind my left ear, and it will more than likely effect my motor skills and speech(I'm right handed). sad

Annuk, good luck on your adventure as well, maybe your outcome will be bright !

I'm so lucky to have a family like I do, I don't know what I'd do without'em.

 

Posted 8/26/2006 9:13 PM (GMT 0)
Hi Brad,

Many years ago when my father-in-law was in hospital because of angina, in the next bed to him was a 50ish man who had not had a days sickness in his life until then. This man had blacked out whilst shopping and tests revealed a large tumour in his brain which turned out to be benign, he didn't know for sure when he went for surgery! I can remember thinking at the time that this was awful especially watching him shaking in fear. I made sure I spoke to him every day when visiting and went to the neurological unit when he had the surgery. This man made a full recovery and said my visits really helped him cope.

My prayer is that someone will do the same for you Brad, and you can be assured that I will pray for you through this. Which hospital will you be in? (Don't worry I shall quite understand if you prefer not to say).

Please come here often and vent and talk about how you are feeling if that helps! We are all rooting for you. I am very glad you have got family around you. Keep fighting and take care

Ann
Posted 8/27/2006 12:34 AM (GMT 0)
Hi Brad, I am usualy on the cd, arthritis & chronic pain boards. But I too suffer w/migraines. I have read your posts and wanted to let you know you have been added to some prayer lists.

If possible perhaps a family member can come here & leave a post after your surgery to let us know how you are. I have no doubt that you will do just fine. I am so glad you got to this neurologist when you did. At some point after surgery when you are recovered you should let your family dr know about this tumor, maybe he will be more prone to be agressive with the next patient that has a terrible headache.

Susie
Posted 8/27/2006 1:14 PM (GMT 0)
 Thanks guys for all the encouragement ! I will try and see if I can get my wife to post an update after the surgery. Most of my fears are about waking up, because the surgeon has told me that without a shadow of a doubt I will have some problems, what they will be he doesn't know.How long they will last, knowone knows. sad   More than likely it will be motor skills, vision, hearing, ETC. I will have the incision behing my left ear, and the part of the brain that effects all this stuff is where they are going through. Which is not a bad thing, from what I understand, it could be worse.

I will be at

Self Regional Healthcare

1325 Spring Street

Greenwood, South Carolina

29646

The surgery has been rescheduled until friday September the 8th.

Here is a link to my surgeons, and they perform NO surgeries alone, so that makes me feel a little better. 2 Heads are always better that 1.

http://www.selfmemorial.org/physician/view.asp

Just look under neurosurgery on the left.

Thanks everyone for your thoughts and prayers. This waiting is killing me by itself !

Post Edited (Brad69) : 8/27/2006 7:19:01 AM (GMT-6)

Posted 8/27/2006 2:05 PM (GMT 0)
Hi Brad,

Yeah, it would be good if your wife could keep us up to date with your progress!! Thanks for all the info, just wish I could come to see you, but I am in the UK.

The best thing to help with the waiting is to try and keep busy to distract yourself, not easy I know - I will probably have to start taking some of my own advice when it comes to my turn!!! lol I am not impressed that I will have to wait till October time for my tests which is nothing to what you are going through!

Still in my thoughts and prayers, take care

Ann
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