Wow, I would be LIVID right now. The nurse practitioner had NO business talking to you like that and I would really be completely done with that office were I in your situation. But yeah, I know it's 'easier said than done' because I'm currently trying to replace my doctor and not having much luck with it either. It's just awful that they're putting you through this on top of everything else right now. I'll be praying that the specialist can work you in quickly somehow and that you can find some relief!

Oh MonkeyMom!!!

I can't believe how they are treating you!!!

So incredibly insensitive and dumb of her, in my opinion. I don't think that nurse practitioner had ANY idea what she was talking about, at all!

But please, don't think it's all in your head... You are the only one who knows how your body truly feels and you need to have as much confidence in yourself as possible so you can be a good advocate for yourself.

And if you feel like it, think twice about completely stopping the Diamox at such a high dosage. Not to impose, but you maybe should try to wean yourself off of it if you're going to stop taking it, at least over a few days period maybe.
I'm no pharmacist, but I know that's going to make you really sick.
=(

I'm so sorry hun.

Drs dont understand what we go through. Maybe one day they will. About a week ago I went to the ER for pain and popping in my ears and he had no idea what ptc was . He said I can give you a high dose of tylenol . I laughed at him and told him to get me some m&ms cause they do the same thing for my pain Nothing.

I'm in shock that she talked to you that way and was so unprofessional. Plus, she has no clue what she is talking about...that is not the reason you have whooshing in your ears. I would refuse to talk to her anymore and demand to talk only to your neuro Dr. unless he/she is just as idiotic. I don't know what kind of office she is in, but I would complain to who ever is in charge (only if you are up to it).

She reminds me of that neuro Dr. I saw once that I posted about. I actually sent him a print-out of the symptoms of PTC to inform him of what an unknowledgable jerk he was.

You are not psychosomatic....this is a real disease you have and don't let them make you think it is all in your "head".

Your Dr's can talk to the specialist and tell him/her you need to be seen ASAP and then you can get in right away (it's done all the time).

Ok, universe MM3 has had enough crap thrown at her and now it is time to give her the support she deserves!

Jazzy

ps. I will kick that NP to the curve for you! (like when I hurt my back at work and I went and saw a NP who said I could go back to work and I hurt myself more and had to go on disability....after that only the Dr. saw me and kept kissing my you know what since his NP messed up big time).

I just thought of something, you should ask your NP then why you do you have papilla edema since that is a classic sign of PTC!

Jazzy

MM3-

When I read your post I raged! You are dealing with terrible providers who minimize because it is easier to say your crazy rather than actually doing their jobs. Before I was diagnosed I was going to the doc, weekly begging for some help because I thought I was dying. I was always sent home with an antibiotic and told it must be a sinus infection even though I had no signs of infection. Before I lost my sight (it was temporary and I gained my full vision back in four months after getting my pressure under control) I was told that it was a psychiatric issue. When I had lost my vision is when I was finally taken seriously but it was because the clinic was certain that I had a brain tumor. When I was finally under coordinated care with both an opth and neurology docs working together, we started to make progress and learn about PTC together.

Do not let their lack of professionalism get in your way. Rage and go to a new clinic ASAP. Any new system will be better than the group that thinks it is fine to let you suffer. If this Sh$% keeps up they might end up with a small army of angry women making their professional lives hell. We can do that. The providers are ranked annually and it determines the pay scale that they fall under from insurance companies and this is the type of BS that brings them down.

When I finally ended up with a wonderful neurologist he told me that intracranial noises are not normal and are always an issue that must be taken seriously because it means that there is pressure in you head and a sign of PST, tumors, stroke, or slow bleed annurizm and needs to be monitored. He told me that docs who discard this symptom and give out rediculious speculation that it is normal should be not allowed to practice.

I wish you lived in mpls so you could go to my doc. Anyone in MM3's area that has a good coordinated care clinic please share info.

Warm wishes to you and stay optimisitic, you will get this crazy disease under control.

Much love

Peggy

I am slightly mortified that I hit the post button without spell check first. You all now will know that I have a dirty little secret that I can not spell worth a damn. Hopefully some of you can find it humorous and to think I actually made it through college.

KSMama: I am so proud to have you in our group and happier still to have your support. Thank you. Many of you mentioned that I should immediately find a new NS. The problem is that I have seen almost every NS in the Rochester area and they are all the same. I actually thought this one was a winner. And who knows...maybe he still is. He may not be aware of what his NP is saying to me. I will have a talk with him on Monday. Rochester is a funny place. Both of the major hospitals are teaching hospitals so while your in you are poked and prodded by a dozen or so residents and occasionally visited by your Dr. If you think the Drs. don't know what PST is...you should see the Residents. One of the Residents actually asked me what I was diagnosed with. When I told him, he said, Oh...where is the tumor located??? The Drs. offices aren't much better as almost all of them are filled with Physician Assistants/Nurse Practitioners and you rarely actually see the Physician. While I respect PA's and NP's they just don't have enough knowledge...especially about rare diseases such as this. My mother said that in Ohio she has never seen a Physicians Assistant. Do you guys see this trend in your area....or is this just another crappy part of Rochester???

As for the specialist...due to the lack of education on the subject in our area combined with a limited number of doctors, I doubt I'll be seen any time soon.

Never: I don't doubt myself. I know I have PST, and maybe I'm going off the deep end to stop the Diamox. But, I am so tired of feeling as if I have to justify my illness. Tired of being pushed off because what they thought would work didn't and now they don't want to deal with me. I have been through this more times than I can count. So, I'm going to do something about it. I have a load of pain medicine in my arsenal should I need it. You may be right, and I probably should listen...Thank you for your concern. You are very sweet. And, no...you didn't impose. There is nothing you can't say to me.

Talitha: I've been in your shoes as well. Spent time in the hospital several years ago for a hemiplegic migraine attack. After a week on a Dilaudid IV...I started having horrific rebound HA's. I also had a nasty infiltrated IV. I spent 8 hours begging for something else to control the pain. The residents laughed at me. Instead of contacting my NS, they finally contacted an Internist. He said that my team had ordered Dilaudid...so they could either give me more of that (which I obviously refused), or he could give me asprin. I called my husband and walked out of the hospital. Went home and took my pain medicine. I'm so sorry that you have had this same experience. I have been in and out of the ER more times than I can count over the past two months for PST HA's. Yet, still the staff has no idea what I am talking about when I tell them I have PST. They mark down that I have a migraine and try treating me as such. This last time, the ER doctor said he was going to give me Imitrex to treat the "migraine". I reminded him that I had PST and that as a person who also suffers from hemiplegic migraines, Imitrex could cause me to have a stroke. Nice one doc! (He was a Physicians Assistant by the way)

Jazzy: As always, I can count on you for endless support. You know, I like your idea about trying to educate the NP...but, she just won't listen. She already knows everything. I know this because, as with the "whooshing" noise symptom, she didn't care to hear it. She is convinced its nothing. But, again, I will speak with my NS about the conversation. I so wish you lived closer so you could just give 'em hell! Thank you.

Poleary: Clearly you have been down this road that I'm on before. (I'm sorry.) We are treated like we are crazy. Which leads me to share with you that I suffer from depression. I take Wellbutrin XL everyday and have for about 10 years. The condition is and has been well under control. I bring this up to you because I know that many people with chronic pain suffer from depression, as well as those who have neurological illness such as migraines, parkinsons, head trauma, MS, seizures, etc. And sometimes, depending on where the disease effects the brain, patients can also suffer from bipolar disorder, anxiety, etc. I mention this because, very often, once a NS sees "Depression" on my medical record they begin to question my sanity. If I have pain and I am on medication that they feel should be working to keep the pain and HA's under control...well then it's the anxiety from the depression that is causing this psychosomatic response. HELLO??? I've never been hospitalized for depression. I've never tried to take my life. I've never exhibited actions associated with extreme anxiety. Yet, all of a sudden the depression becomes an easy excuse for what is wrong with me when the Dr's. don't know how to do their jobs anymore. In fact, that hospitalization I mentioned previously due to the hemiplegic migraine?...When my pain worsened due to the Dilaudid rebound, one of the Residents stated to me that she knows that I suffer from depression and that my pain could just be an extension of that. That they aren't going to give me anything else because the don't condone drug seeking behavior and she knows that some people who suffer from depression try to self medicate. WHAT????? I hardly ever use narcotics. My PCP/NS would give me a prescription for a 2 week supply that would last me 3 months. I was rarely in the hospital except for uncontrollable pain. My mom was sitting there as I began to cry, and I literally thought my Mom was going to choke her.

So, I've seen it all. I was just hoping that I wouldn't see it again. Lo and Behold...Here we are. I really feel that once we get this under control I should begin a career in Public Speaking. My audience will be Doctors and Nurses. I will educate them on the importance of the proper care for the patient who is in chronic pain. And that even if you can't see it...it doesn't mean it's not there. Furthermore, I would like to educate them on PST/IIH. I will share our stories....and in that dream I hold on to hope for better health and a better chance for our children. Better yet, maybe we could start a movement in each of our areas. We could educate together.

Thank you all for cheering me up. We had a Thunderstorm tonight and I haven't had my afternoon or evening dose of Diamox. So far so good....We'll see how things are tomorrow.

MM3,
I did'nt mean to come across that you had to educate this NP or do anything of that kind, but I hope you refuse to see or talk her and only talk with your NS.

Where I live only 1 NS at the hospital has a NP, but she is part time and sees the pt's after the neuro Dr. and for standard things...not complications like you are having.

They are pretty common in Ca, my PCP has a great PA so I trust him, plus he goes immediatly to my PCP (while I'm in the room) if he is concerned about anything. Nurse practioners usually just see people with standard issues, either this one you have thinks she is so great or has so much pride that she is not willing to go to the neuro Dr. and ask for advice..while I don't mean to put down any nurses who come here, they are not freaking Dr's., and I have refused to see ones when I knew the Dr. would be able to help me more.

I wish I was there to do your phone calls and go to appointments with you!

I'm sorry you are going through so much right now.

Blessings, Jazzy
"There is a light at the end of the tunnel, and it's not just a another train coming".

Dear Poleay,

I'm so sorry you have been through so much and the Dr's at first said it was a psych issue. That infurates me!

I firmly believe that when a Dr. says this (and I have heard many Dr's report this while I worked in hospitals) its because they are stumped and can't figure out what is going on...there is so much to our bodies that still isn't known.

I was reading a story about a woman who has an adult like disease of mad cow disease (its called jacob somthing disease) and her Dr's wanted her family to commit her to the psych ward (even though she had also phsycial symptoms)...finally her family found the only testing facility in the US and sent a blood sample and that was, or course, what she had! I always think of this when ever a Dr. hints to me that maybe I'm just stressed or something..I know when I'm stressed, but I def. know when something is not right with my body.

Blessings, Jazzy

Jazzy:

You don't have to convince me to educate the medical world. I am determined to do it or make sure it's done. This may be rare but exists and certainly enough that the medical community should be aware of what it is at the very least. Most certainly in the hospital environment.

Just my opinion of course. How I wish House worked at my hospital!

-MM3