MM3 thinking of you daily i really am i honestly hope they get it on the first try and you don't become a pin cushion,

Thanks i did enjoy my easter it was the First time in 3 years i didn't have to lay on the floor with a low pressure headache for easter lol WAS great had a headache but not a have to be gone from this place kind of headache.

Please keep us informed on how the Rochester docs go and when your going in so i can think about you on the day and send my luck (what little i gots lol) across the waves

Khrys,

What did they do in OH? Did he adjust your shunt? I know you have tried many settings but for me it takes time to adjust. I have felt results in as little as 2-3 days and as long 2 weeks to feel them. My NS says it is a gradual transistion. Maybe you still need more time before you resort to the trauma of a NY LP. I hate for you to have to go thru that. And what did he say about a shunt tap?????

TJ

Oh ya one more thing. Do you think there is any chance you have a rebound HA from all the Dilaudid you are taking??

Bless your heart! I feel for you on the long car rides with the horrible headache - I only endured 8 hours recently to take my stepson home and I begged my husband to take me to the ER as soon as we got home. I don't know how you do it, you're much stronger than me! I'll be praying for you, and praying that you get some relief and find a capable, good doctor in NY.

KC

Oh MM3,

I just can't believe there isn't a capable NS in your area - or at least closer than a 7-hour trip to Ohio. You've probably checked already with the IH Foundation?

Don't give up ..you owe it to yourself and your family to keep going....

Thinking of you...

Judie

Well, damn. I've had my fingers crossed for you. Hopefully this was just a bad day and tomorrow you will wake up HA free.

I mentioned this to TJ to share with you - if you are going to drive 7 hours to Ohio, you might as well point the car south and come here to NC to see my NS. I'll have clean sheets and towels in the guest room for you, just say the word.

Wishing you a better day tomorrow,
Eileen

You are all very sweet. Drgnfli - thank you for you good wishes.

Cross - I don't know how strong I am really...sometimes we just have to do whatever it is we have to do just to get through the day. And so it goes...Many times we don't know how strong we are until we are forced to step up. I think anyone who has this disease is strong...you have to be. But, thank you for the compliment, it motivates me to keep pushing on.

Judie - I know...it is difficult to believe that good health care is so hard to find. I have gone through the IH Foundation, our hospital system, my PCP, and my shunt manufacturer and still no luck. I can only hope that things change soon.

Bianca - Clean sheets, a warm welcome and someone who understands what I'm going through as well as good doctors? I'M ON MY WAY!!! :)

TJ - My little engineer! You are such a smartie pants! I say this because Chris and I are both wondering if I am having rebound HA's from the Dilaudid right now as well. The reason why is because Dilaudid has been known to cause rebound HA's with me before. (Years before...but still.) Additionally, while I was in Ohio last week I was barely taking any Dilaudid as I was so busy and doing so well that I really didn't need it. Also I had run out...so when I did get a HA I took a couple of Percocet and felt fine. But, when my family arrived for Easter weekend they brought my Dilaudid and I was back to taking it and I awoke to a HORRIFIC HA! So...maybe. I see my PCP on Thursday and will be discussing this with him. Also, we have been getting some storms here with varying degrees in temperature...so this may also be the cause. I will wait until I see my PCP doc on Thursday before I make any decisions about an LP. And yes...I did ask my NS about tapping the shunt and he said they don't do it often and that it isn't as reliable. I argued that if it is less traumatic and gives some type of reading that it is obviously a better choice. They declined.

So, we'll wait to see what Thursday brings and how the rest of the week turns out. So far, I'm still not feeling well. I slept until 5 p.m. today. Also, I'm feeling a lot of pressure in my right ear. (Shunt is on the right side) The pressure is similar to the pressure you feel when you are in a plane and you have to "pop" your ear. Does anyone else experience this with your shunt and/or know why it happens?

Thanks for all the well wishes. WIll keep you updated.

MM3

i get that ears needing to pop feeling since the shunt it is definitely mostly isolated to the right side but will go in both ears occasionally. I try everything to help it yawning eating swallowing etc but it is a takes it's time thing. I really hope it is just rebound headaches ( even though i hate hearing that word and if i am told my frigging headache is rebound again i will loose it ) especially as you have seen it happen here is hoping hey... Will be keeping a eye out to here how you have gone

Aw, MM3.... damn.

Well, give me a heads up if you end up in OH. We can visit again. And I want to paint you. Nekked! HA! (made you smile!)

Hi MM3. Oh boy.I turn my back for a min and off you go! I am so sorry to hear all this s**t! It just has to get easier...

I m am going to follow TJs thought here, with the rebound hds. As you know , I have been put off all drugs, including pain meds for 3 months.Within two days I could not believe the difference! I felt alive again.Now , it wasnt all plain sailing Im afraid. I had the DTs big time! Also, I still get my "evening " headache, just like when I first got sick. BUT! Not all day and night anymore. I am down to 30mgs of codine a day.( from about 180!) I am getting more claer headed by the day.

As for the storms....Thankfully, a very good friend of mine has been keeping a record of my dips in the last few weeks.( i am not to be trusted!) And, the two times I thought I would go crazy with the pain and my eyes, was prior to a storm. When the storm lifted, so did the hd. I was as good as new again.

It is something to hold on to, both ideas. Oh, yea. Forgot! I took one Diamox when I was bad and it seemed to help. Maybe when you know a strorm is coming , you could prepare for it?
As for giving up the Dilaudid, it is tough but you will feel so much better and moreable to get thru it.

I swear! as well as being DRs , we will also be Meteorologists! Take care my friend,Cath.

A guy I used to work with said that he was going to put me out on the front of his boat before he goes fishing just so I can tell him when a storm is coming. It is my super power but a gift I'd give up in a heartbeat if I could. As for the Dilaudid, I saw my PCP today and had a long discussion with him about it. I have been trying to wean off of it for some time. I'm gratefully able to now say that I only take it when I need it instead of taking it everyday in order to avoid the withdraw effects...(anxiety, sweating, aches and pains). Regardless, it's bad stuff and I'd rather never need it. Unfortunately, until we get this whole thing with my shunt worked out.(Whether it's working or not.) And/or until we discover if I am suffering from migraines separate from my IIH...I guess Dilaudid will be a part of my life. As I expressed to my PCP and as stated on my FB page I relate to my shunt in the following way....Remember the movie Charlie and the Chocolate Factory? Remember the part where the fat boy gets stuck in the chocolate tube? Well, I think I have a fat boy in my tube somewhere. When he's stuck (i.e. when I have a blockage), then I have horrible pain and pressure. But, eventually the pressure builds up so much that the fat boy (blockage) is forced out. When the fat boy is gone I feel pretty good and I do well for a few days. Unfortunately, the fat boy keeps coming back. What I need is for my docs to find the fat boy. This is why I asked for a shunt-o-gram...and I think it's why my pressure readings are still high and why my valve swells...because the csf fluid get's "backed up". Now, if they can prove to me that my shunt is working fine...which I don't believe they can...then we need to look into whether or not I'm having migraines outside of IIH. This is a possibility given my history. And, the last question is do I or don't I have a CSF Rhinorrhea leak? My nose still runs a lot and this has yet to be tested. If I do still have a leak then could this mess with my shunt and pressures? At the end of my visit my PCP said he would speak to my NS and intervene on my behalf to find out what tests we could have run here to determine the function of my shunt...(LP, Shuntogram, Shunt Tap, Nasal drainage testing, etc.) In the meantime, we are going to try and find some docs in Syracuse. Rochester seems to be an endless pit of ignorance unlike any I've ever seen.

As for Bax...it's good to hear from you. You can paint me nekked...but then you'll need to promptly poke your eyes out. As for the trauma that is left on your brain... I cannot help you. It is helpful though that you are a Social Worker in that you should know some good therapists. If you're good with all that than I'm game. LOL!

Much love,

MM3