Hi MM3!

I'm an expert on Toradol. Been using it for the past 15 years. That's a very good pain killer. You can buy it at any pharmacy for the price of $1.00/per pill. My insurance covers it, but when it's hard for me to get the prescription, I buy it in any pharmacy.

Hi MM3,

No humor here either. I am so sorry you are going through so much pain and other symptoms right now. I don't understand why they didn't give you a prescription to the pain med that helped you (idiots..sorry but that's how I feel) I hope you don't have to go to the ER and I pray that you start to feel better. Sending healing energy, Jazzy

I'm so sorry MM3. The Indo-whatever hasn't ever done much for me either, and your pain levels sound way more severe than what I have going on right now.

You didn't ask for advice, so feel free to not listen and march me to my room. I know you feel a tremendous responsibility to your family (It's a mom thing). Can you take it a bit more easier and allow your family to help out? Especially your older kids? I know that the more I move around the more I hurt. So if my middle-schoolers want mom to be engaging at all after work, she needs help. And lots of it. It's made a big difference.

Hope today is better for you!
Bax

Krystell:

Thanks for the input on the Toradol. After being up all night last night I have placed a call with my NS so hopefully they will call in a prescription for this.

Jazzy:

Your support is awesome. I swear I wish you lived closer. You would be such a great advocate when I'm in these ridiculous situations. Steel toed boots and all!

Bax:

The Indo stuff didn't help at all. I guess it is used to treat a certain type of headache where one of the symptoms is a watery eye. My NS asked me the other day if my eye starts to water with these HA's and I said yes as my eyes become photosensitive and I have pain behind the eye. OKAY....NOT the same thing as this headache which is also characterized as being different from other migraines because they only last 30-45 min. at a time and the "victim" does NOT get nauseous or vomit. (NOT ME). Thank you for commenting on the "Mommy" syndrome I suffer from. But, I hope you and the other girls can help me here....

My husband is not convinced that I have PST/IIH. I am absolutely convinced, as you already know. Part of his disbelief stems from TJ's confusion about his "remission". The other part stems from the fact that the doctors keep putting me on different medications and I'm still having more bad days than not. When I was "just" having migraines, I would treat with medication and get somewhat better....at least the pain would be relieved for a week or so. Since, this diagnosis he seems to feel that I am sick more often than not. I tried to explain that this is because of the medications, the weather changes, and yes, the PST/IIH. Is there something you guys can say here that I can share with him to help him understand? He's not a bad guy and he's been very supportive, he just doesn't get this. HELP!

- MM3

Had to post one more time here to apologize for any confusing statements I write. I am still pretty miserable, I haven't slept, I'm on a very high dose of Diamox, and now I'm on Morphine and Phenergan....so, I'm a bit confused and the words aren't always coming out right. (The thoughts really aren't either)

Thanks!

- MM3

MM3,

Sorry to hear of your pain. Pain so bad that humor gets left behind is a bad thing and I hope you find something that helps.

I hope your hubby does not read too much into my strange status. I did however send a letter to the IHRF asking some questions about what I just went through to see if they have heard of it before. Also I wonder if your Hubby has looked at their website? The more he learns the better.

I also just got an email about a live Blog Radio event today at 2-4 PDT where Dr. Emanual Tanne co founder of IHRF is being interviewed. I plan to watch/listen to it.

http://www.blogtalkradio.com/ThePositiveSide

TJ

PS. PST .. I thought I had the monopoly on new words.

MM3, I'm *so* sorry you're feeling so bad, hopefully you get the Toradol today and that helps! Your husband sounds a lot like mine, I've been worse in the past two weeks than probably ever before - I got the dx and started going downhill fast, but I have no clue why. Although, like you said, the medications, the weather are all good reasons. Also, it's just tremendously stressful to deal with this, especially while feeling so bad & I'm sure the stress contributes in some way (as does the tendency to overdo it on good days). Migraine meds never seemed to work for my headaches before, but usually they could be somewhat controlled. Lately, nothing is working and it's very, very frustrating as I know you know! I think for my husband at least, he just needs more time to process and accept all of this. The poor guy - I only got re-married last year and it's been literally one thing after another (with me) since our wedding! I'm sure he's wondering *what* he got himself into.

TJ:

Thanks for the feedback...I was beginning to think you'd gone back into your coffin until the sun disappears. Glad to see that's not the case.

That strange lumpy thing is back in my throat, right behind my chin. And, interestingly enough, the "whooshing" noise is back, but, in the left ear. (Has always been in the right historically.) I called my NS at 8:30 this morning and still nothing. I called them back and the secretary was VERY rude. (I need to get those steel toed boots from Jazzy....."Can you smell what the Monkey is cooking????"

And, yes, TJ, you still have the monopoly on new words. I'm on a lot of medication right now, so that doesn't really count. Your still #1.

KS Mama:

I'm glad you can relate to me, and of course, saddened at the same time. I wouldn't wish this on anyone. As for your husband...I'm sure he sees what we do. You are a beautiful girl, who has a positive "glass half full" attitude, your a caregiver and obviously a wonderful mother if you can still home school your children while in the midst of this chaos. I'm certain that there is much more that makes up who you are than this disease. "For better or for worse" is a vow that I'm pretty certain covers this. It's not cancer, thank God, its not terminal, and I'm sure that you and I and all of us here will find the remission bliss someday that TJ and so many others have.

I may have lost my sense of humor, for a moment....but, I haven't forgotten to count my blessings. This group is one of them. Thank you. I'll keep you updated as always.

- MM3

P.S. Have I been voted most likely to write a book instead of a post yet??? Sorry, I always have way to much to say and it gets a little lengthy.

MM3

Hubbs are difficult animals... they just want to fix you. (reminds me of the scene in "White Men Can't Jump" where he gets her a glass of water and she just wants to be supported emotionally in her time of thirst... i totally get it)

Maybe it would help to look at it this way?

1: There is no known cause for PTC/IIH and therefore, no known cure. All they can do is attempt to treat symptoms. Like playing darts, but you don't know where the target is. The bullseye becomes double-tough.

2: PTC/IIH is rare, so few docs know much about it, even fewer have experience treating it. So, in the analogy, you don't know where the dart board is, and you've never played before.

3:And it takes a few weeks for most meds to reach their theraputic levels. My meds got upped two weeks ago, so I'm just now finding out if it was enough or too much or if I've just past the theraputic window and it's making me sick. So the newbie dart thrower won't know if he hit the board for a while, let alone the bullseye.

4: The medication that is useful for everyone tends to vary... allergies, tolerances, etc. Try to not throw lawn darts or even the plastic-tipped darts at the target made of cork (but you won't know it's the cork kind because you can't see it cause you don't know where it is).

Ok... I think I let the analogy run away with me a little... it's past my bedtime! That and I just realized we were the ones getting darts thrown at us in all of this!

Maybe it helps?
Bax

I finally got the Toradol and it seems to have helped a bit. Hopefully the relief will last. Bax, thanks for the dart analogy my difficult animal should be able to get that. (LOL)

I'd say more here but, I can't think very well, and quite frankly you guys probably need a break from my rambling. So...simply put....thank you.

Hey wait a minute here. I resemble that remark........difficult animals.......

But maybe it is my canned response that differentiates me. "I'm sorry honey, it's all my fault"

Oh...TJ...You silly boy. Your still a difficult animal....its just that you've been trained properly. I have one of my own whose been trained. Although, more training may need done. LOL.

Well trained, hmmmmm.............Does that mean I get a Scooby Snack?

Pop quiz TJ:

Did you understand Rosario Dawson in the scene I mentioned? Or, did you think... let the guy get you some water, geez!

But let me reframe that for the sake of clarity. We're all animals and men sometimes think about things differently. There.

PS. Every morning this week, the house across the street has been covered in Canadian Geese! Even the roof! Squawking to beat the band! 8am! Hilarious

Wait... is that the actress's name? Oh no! CSR and I haven't even gotten into work yet!

Oh well, ya'll know what I mean.

Bax out