MM3,

First of all, BIG hugs! I TOTALLY understand your pain, been there done that.

Second, you've done almost everything I can think of short of the ER. The only thing I can think besides going in is somehow getting to sleep through the pain.

Unfortunately you've taken enough meds that I would hesitate to take sleeping pills without checking with a nurse or pharmacist over the phone first to make sure they won't interact badly. But, if they say ok, try to knock yourself out with a sleeping pill or two.

If that doesn't work, or they tell you not to take it due to drug interactions, unfortunately I think the ER might be the best bet, sorry to say it hon. Maybe you could work out a small payment plan over time? Your health is more important than the money.

Again, gentle hugs. I really really hope you can find relief.

Non-drug ideas: massage (is your husband around? Have him specifically work on the tendons that run down from the base of your skull down your neck to your shoulders. Find the tight spots and push his thumbs into the spot deep. Then hold for 30 seconds, pushing slightly harder and harder as the knot loosens. Repeat at every tight spot. Then gently massage all over to loosen the entire area. Also focus on the band from ear to ear like if you were wearing a headband, and underneath behind your ears.)

Really hot washcloths/hot packs (so hot they almost scald you) on the back of your neck or across your eyes are something else that might help a tiny bit.

If you cannot sleep, try to distract yourself. Try a book on tape or having someone read to you if you are in too much pain to look at a TV screen or computer for long (I find when I am nauseated that the TV and computer sometimes make it worse). If you can focus on the book - make sure it's one you love! - that can help take your mind off the pain a tiny bit. Or listen to music if books aren't your thing.

Set a teeny tiny goal - that you will focus on calming and breathing until you can get your pain level from a 9 to an 8, or whatever. Or that you will focus on trying to sleep, or praying, or on a massage/book/TV for 5 minutes at a time instead of the pain.

I wish I could make it go away. I hope you feel better soon.

If you can make it till morning, try getting a scrip for a diff med, maybe even in shot form.

Personally, I used to take Percocet but the past few times have started vomiting uncontrollably afterwards so that's out, and Dualidad works best for me in IV form, plus I'm afraid of forming an addiction, so I just don't go there.

I have found that Fioricet is decent if I take it soon enough, like right when the pain starts ramping up. It has a certain combo of meds that seem to help a bit. You might want to try it if you haven't yet.

But whatever the case, call the doc in the morning if you don't go to the ER tonight, and ask for a diff med to try for the bad nights, to keep you out of the ER in the future. I hope you find something that works for you.

MM3,
My prayers are with you. I work in for a hospice agency and have seen the nurses work wonders for cancer patients as far as pain goes. Our pain is caused from IH and until the fluid goes down, the migraine will be there... I found that taking 2 vicodins with orange juice picks up the effect and numbs the pain. I am able to, at least, sit there and look without crying.

Sorry I cant help anymore than this...

Dymin

I am sorry you have so much pain.My sugestion for pain is you can put ice in a cloth o a plastic bag and put it where it hurts .Also my neurologist used to tell me that when I had bad headaches to take two motrins of 800 mlgs each ,that most likely will work on any pain.I really hope you get better soon. HUGS-
Wolvielove

Thank you all very much for the outpouring of support....and even more for the advice.

Just to be clear, I didn\'t take all of those medications at the same time. (LOL) The medications tried were taken over 4 hour increments throughout the day and nothing worked. Eventually, I fell asleep. I think it was the final combination of phenergan and valium for the nausea and dizziness I was experiencing. I slept until 1:30 p.m. today!!! (I know...OMG!)

That being said, I have horrible pain starting in my neck and upper shoulder and running down into my lower spine. I can barely move. So apparently, all that CSF has "mostly" emptied out of my skull and down my back. Of course, I still have the constant whooshing in my left ear, and some pressure/pain on the left side of my head.

I have taken two Flexeril tablets, but, they aren\'t helping. (Here we go again...) I have to run to the store in a little while and my son has prom this evening, so of course, I have to run out to get pictures. I\'m willing to bet that by the time I get back home I\'ll have full pain as I did last night. So, I\'m bracing for that.

When and/if that time comes I will be sure to take all of your advice. I have a neurology appointment on Monday, so I\'m keeping my fingers crossed until then. (Of course, this appointment is with the nurse practitioner who told me that, against all the evidence, she didn\'t think I had PTC!) I don\'t see the PTC specialist until the 8th. But, at least maybe I can get them to give me something in a shot form until then.

Thank you all for your help. It means a lot. I had written my post at 10:30 last night, and kept checking for a response, and nobody was there. : ( My husband was checking in on me all the time, but, when you\'re hurting you really need someone who knows what you\'re going through. I felt very alone. So, it was nice to see your messages this afternoon. Thank you.

MM3

MM3,
Oh I wish I could help you. I remember I used ice packs that seemed to help a little and I would take benedryl to sleep at night. I didn\'t have the shoulder/neck/back pain so I\'m not sure what would help for that. Darvocet helped my headaches at first but then it caused headaches, so don\'t know if you have tried that yet.

The only thing I can suggest is if they can put you on a cancellation list so you can get in earlier to see your neurologist if someone cancels.

Last time I went to the ER I was admitted because they couldn\'t control my PTC headache pain so then my insurance covered it (I can\'t remember if you have insurance or not).

You are in my thoughs and prayers and I hope the pain subsides soon. Blessings, Jazzy

Sorry I forgot to add that you can ask for a patch for pain meds...I don\'t know if it will drug you up too much, people in the hospital with severe pain get fentanol (sp) patches, usually on their upper chest, but they seem to function okay and were alert..They last much longer then taking pills every 4-6 hours. Jazzy

Thanks Jazzy...

We have insurance but the ER copay is $100 and my girls have a recital coming up, we have family coming in, and my son is graduating....so, I need the money for other things right now.

I will definitely ask the doctor about the patches. Dilaudid normally helps me but, I\'m out.

I got the photos, went to the mall, came home and went straight to bed. I can\'t move because my neck and back hurt so badly. And I have so much to do.

I\'m also worried because my in-laws are coming in this Friday and I\'m 15 pounds heavier than the last time they saw me due to the steroids and other meds. They\'re going to think I\'ve turned into a lazy fat freak. I have to lose this weight, but, if I\'m in pain I can\'t move. So frustrating.

Horrendous pain has set into my neck and shoulder muscle. Can\'t move my head...and no medication will numb the pain. : (

Ok MM3,
First of all, please quit being so hard on yourself. You are not lazy or anything, you are in pain. And if you think that anyone is going to judge for taking pain meds then you are talking to the wrong group. I have to take pain meds daily, on a scheduled dose, sometimes you need to do that to get ahead of the pain when you have high level chronic pain like we all have. As to taking valium and phenergan at the same time, I have had to for vertigo and nausea so bad. I was a person, before this that never took anything but an occassional Ibuprofen. Stay ahead of your pain by taking something every 4 hrs while it is so bad, and phenergan is a medication that is used in hospitals all the time to increase the length and effectiveness of pain meds. Once the pain is under control, then let up but don\'t stop totally or it can get out of control like this again before your doctors appt. Or at least, I won\'t. I am telling you mostly what I would have told my patients when I worked in the hospital. I would see what your body says, but I would start at the weaker of the meds when mixing the meds. IE.. Vicodin and Phenergan is the safest. But too much more, I have no idea what strength of medication you have so... mixing could mean something every 2hrs with severe pain. But that is what the Dr would classify has severe pain.
I am trying to think of things we did in the hospital, Ice bags like Jazzy said, keep stimulation down, rest when can. I hope I was some kind of help. Just know that we all have had severe days, we are here to help. Take care, Karen

Thank you Karen! It\'s nice to have you here to help!

MM3 - I\'m so sorry you\'re having to go through this again. I\'m dealing with the same nightmare after nearly 3 weeks of no real headache and it\'s VERY discouraging. I\'ve got the whole stiff/sore neck thing and major fatigue as well, the only thing I can really do is try to lay down as much as possible and ride this out...My PCP gave me a Toradol injection yesterday but the results were laughable. I\'m sorry I don\'t have any real words of advice, just know that you\'re not the only one going through this -- hopefully it will pass quickly!

Thanks KS! I\'m sorry that you are still in pain. I just took two vicodin and two flexeril. They are taking the edge off, but, obviously not getting rid of the pain. And, I am very tired. Like you, I am down for the day, wasting away on another beautiful Sunday afternoon. Good to know I\'m not alone, and yet I so wish you were feeling better.

MM3

Don\'t feel too bad guys my Sunday was spent in bed also. Must have been bad all over. I didn\'t have a lot of pain but really weird feeling whenever i stood up. monkeymom have you ever tried Relpax? Works like magic after a couple of hours sleep. It might help you also. I also swear by ice packs. give me ice pack, relpax, deep breathing excercises and sleep. thats my rx.

Went to the neurologist yesterday, (the nurse practitioner), she asked what\'s been going on and asked what my goal was. I laughed told her what\'s been happening, that I stopped the meds because of her, told her I still have PTC, and said that my goal was to feel better and stay out of surgery!!!

She gave me a script for Skelaxin...I\'ve slept a lot, but, not any better. My back is killing me and I can barely move! She said as far as the Diamox, she wanted me to wait until I saw the specialist next week. I think I want my $40 co-pay back!

Anyhoo, still suffering! : (