Migraine

Ok - in another post Nancy had brought up for me to check out a couple articles on PTC - I checked them out, now I'm a little worried. So here goes my questions. I know from reading that you an only get the results of this from a spinal tap.

1. out of they symptoms listed - such as Migraine with unexplained triggers, pain behind the eyes, pulsating intracanial noises, neck, shoulder pain, vomiting, headache - how often should this happen to make me concerned? If I think about it - I always kinda hear a pulse in my head - I thought this was normal so I never brought it up! - sorry I am just getting nervous now.

2. Pain behind the eyes - When I get a Migraine - this is INTENSE! But would this be an all the time thing?

3. I already know I have very bad cirulation throughout my body. More on my left side. I have had sclerotherapy to close veins in my left leg (and this was when I was 28!! ) I have a collapsed vein in my left arm - so could this also be part of the whole "throbbing" thing?

4. Where do I start? I was going to make an eye appointment anyway since I am way due - and being on the Topamax I want to have my eyes checked to be sure I'm all good.

I already have a feeling my Neuro isn't going to go for this. I just have a feeling. I know that this could explain a lot - I just feel like I keep jumping from doctor to doctor.

Sorry if this is a lot of questions. I just guess I never thought of this as a possibility. I just alway thought, "oh, I get Migraines" I can really kick myself now. Sorry if I'm coming off a little freakish - it's just a lot to process. I'm ok - really I think it was just the last thing I would have thought of. Thanks to any who respond.

Eileen

Please don't worry about the questions. I felt the same way. Let's take a deep breathe and relax, ok?

The eye doctor is a good start, an opthmalogist, not optometrist. This doctor can REALLY look into your eye and see if there is any swelling in your optic nerve, called papilledema. But please note, you do not have to have papilledema to have PTC. Only a spinal tap confirm PTC.

If your Migraine/head pain, throbbing, pulsing, and noise in your head is enough to make you stand up and take notice, then it is time to talk to your neuro about it. Too bad if he doesn't like it, it is his job. Bring in the information on PTC and have a conversation on it telling him you really want to rule out this condition.

Any ringing in your ears???
No more questions to make you crazy??? OK , I promise.

I get ringing in my ears - but not all the time. Not enough that makes me notice. If I had to guess - maybe once or twice a week???? Totally a guess though.

Thanks Nancy!

Eileen

Well, as you said- the only way to be sure is to have the spinal tap. Not fun, I know.

If this is a concern for you, this is definitely somethign that you and your doctor need to discuss.

Getting your eyes checked is never a bad idea... but it's not the definite indicator of PTC, as you already know... (and as I had to remind a doctor myself.)

I'd definitely bring it up and go from there- even possibly saying that you want to do the lumbar puncture. Not too many people volunteer for these things, I'd bet- (I did) and if you're wanting to have this checked, I'd think with the symptoms that you're reporting, they would go along with your request for further info...

Chalk me up as another spinal tap volunteer. I pretty much refused to budge on the issue of having one, since I'd been evaluated with MRIs twice for suspected MS and showed all kinds of stuff that sounded like PTC. Everything coming back clear was like a big present to myself, with lots of peace of mind.

Forgive me for sounding like I have no clue.....but I have no clue!!! LOL
Would these sypmtoms be something that I would be like "this isn't normal" or because of the Miraine attacks I already get - I may just not even realize. I guess the question is - how do I know if I have enough to question this? I guess like Jamie and Droolie said no one is ever like "yo ho over here! I'd love to have a lumbar puncture please!!!" So I guess if a person feels this strongly then there is concern right?

Eileen

quote:

Originally posted by Eileen:
Forgive me for sounding like I have no clue.....but I have no clue!!! LOL
Would these sypmtoms be something that I would be like "this isn't normal" or because of the Miraine attacks I already get - I may just not even realize. I guess the question is - how do I know if I have enough to question this?

Hey, you're questioning it here, right? I think that's enough questioning- especially if it could make a big difference in your quality of life, and treatment...

quote:

I guess like Jamie and Droolie said no one is ever like "yo ho over here! I'd love to have a lumbar puncture please!!!" So I guess if a person feels this strongly then there is concern right?

Eileen

I'd say so. If you feel like the articles seemed to be referring to things you experience, then there's definitely reason to question, and to have your questions answered now, rather than wondering if there's something more you could be doing. I definitely wanted to know- and that's why I volunteered. I now know that I don't have PTC, so that complication of treatment is ruled out. It's a good feeling to have that knowledge, rather than having to wonder if there's this extra thing that could be adding to the difficulty getting my migraine frequency and ferocity down. But that was just my own reasoning for doing it- we each have our own suspicions and questions.

Being an educated patient is so crucial...So, don't feel like you should have to question yourself about bringing it up. The fact that you know enough to do so is a positive thing, and not something that you should feel like you need to question yourself about, IMHO.

Thanks Jamie! You rock girlfriend!!!!! I am definatly going to keep doing some research. That reminds me - I've gotta call the eye doctor today!!!!! Thanks again!!!!


Eileen

Eileen,

The reasons Dr. Young wanted to do an lp on me were:

• Triggers for Migraine were unidentifiable about 50% of the time.
  
• With that 50% of Migraines, I usually had tinnitus.
  
• Preventives consistently failed.

I did NOT have the papilledema, but he felt we should rule out PTC.

That was a turning point in my treatment. When he did the lp, he drew off enough fluid to put my pressure in the normal range. My Migraines decreased by 50% immediately, the 50% for which I had been unable to identify triggers. This was a major turning point. Preventives started working.

Hope this helps. Continue asking any questions you may have. We'll do our best to answer.

hugs,

Ok - I've made my eye appointment - I asked about the papilledema - she had no idea. Mind you this is just the receptionist so I am going to ask again when I am at my appointment. Either way I need to go. This is a start right??!! Thanks everyone!

Eileen

Teri -
I would have to agree with the 50% no trigger migraines. I can only usually tell when it is weather or menstrual - all others - I have no idea. As far as the Tinnitus - I will have to pay closer attention to this - I tend to be someone who is obsessed with cleaning my ears (I know, not good!) So I always have a popping or noise in my ear. I also almost always hear my heartbeat in my head though....as I said, I thought was normal.... The preventative works for me I guess - I get less migraines on the Topamax then I use to - but I still think I should get less. Abortives: Frova works for me on my menstrual migraines only - nothing else so far. Zomig, well that was a crap shoot, it worked 50% of the time and the side effects were horrid for me.

Would the preventative work at all if this was a possibility?

Eileen

quote:

Originally posted by Teri Robert:

The reasons Dr. Young wanted to do an lp on me were:

• Triggers for Migraine were unidentifiable about 50% of the time.
  
• With that 50% of Migraines, I usually had tinnitus.
  
• Preventives consistently failed.

Eileen,

As I understand it, it depends on the person and the CSF pressure, but sometimes preventives do work, but not as well.

Did you get my email yesterday?

quote:

Originally posted by Eileen:
Teri -
I would have to agree with the 50% no trigger migraines. I can only usually tell when it is weather or menstrual - all others - I have no idea. As far as the Tinnitus - I will have to pay closer attention to this - I tend to be someone who is obsessed with cleaning my ears (I know, not good!) So I always have a popping or noise in my ear. I also almost always hear my heartbeat in my head though....as I said, I thought was normal.... The preventative works for me I guess - I get less migraines on the Topamax then I use to - but I still think I should get less. Abortives: Frova works for me on my menstrual migraines only - nothing else so far. Zomig, well that was a crap shoot, it worked 50% of the time and the side effects were horrid for me.

Would the preventative work at all if this was a possibility?

Eileen

quote:

Originally posted by Teri Robert:

The reasons Dr. Young wanted to do an lp on me were:

• Triggers for Migraine were unidentifiable about 50% of the time.
  
• With that 50% of Migraines, I usually had tinnitus.
  
• Preventives consistently failed.

Yes, got your email - I will be sending you off my info!