Pseudotumor Cerebri Support Group
Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...
Okay, the good news is that I made it through the weekend with my family visiting and like 87 hours of watching dancing at the recitals this weekend. (Although tiring...it was worth it, my girls were awesome!) I did have high pressure over the weekend with whooshing in my ear and some back pain...felt like a HA was coming yesterday and this morning but, it never came.
Saw the specialist today, and while I was there for 3 hours I saw the doctor herself for about half an hour. I was nervous the entire visit and on the verge of tears because I didn't want to start out on another journey with a new doctor only to be disappointed again. I did feel like she and her staff listened to me, but somehow I left feeling depressed and, ...well, underwhelmed. She asked how I've been feeling lately, and of course I explained that mostly I've had severe back and shoulder pain with whooshing and pressure. But, after the eye exam she said my eyes looked good and she didn't see papilledema. She said that I had PTC, but I don't have it now. (???) She said that she thinks I also suffer from hemiplegic migraines...(Duh). So, given my current symptoms...quick question...without doing an LP, how can she say I had PTC 3 months ago but don't have it now based on an eye exam??? I feel like TJ a little bit. Am I in Pseudo-Remission? When I asked her about the possibilities of empty sella and/or mentioned that I had this clear fluid running out of my nose all the time, she kind of blew it off and said, "Hmmmmm." I had taken a CD of my MRI from my March hospital stay, when I was diagnosed. She said that it shows a whole body scan but they left out the brain. So, instead, she pulled up a MRI I had done last October. (Which isn't as relevant.)
She is starting me on Topamax, one tablet at bedtime for a week, than two, than three...etc. I took my first tablet tonight and have experienced some chest "aching" and tightness...should I be worried? Before we left her office, my husband asked if she was going to give me anything to help control pain should a HA occur. She said, "Like what?". (Huh???) I said, like something to control pain. She asked if I've ever used Naproxen. (IS SHE SERIOUS???) I said...ummmm...yes and it doesn't help. Than she said, "Well, even though it is contraindicated for hemiplegic migraines, we could start you on triptans. They say they can't be used for hemiplegia, but there are no studies to back that up." (Again...Huh???) I explained, that early on prior to being told I had hemiplegia triptan meds were tried and they failed. So, finally, I came out and said...can you please give me a prescription for Dilaudid since that seems to help? She said, "Yes, but, I don't want you taking it everyday. Only use it for severe pain." (Felt like I was being accused of drug seeking again by the supposed PTC specialist. My husband was even freaked out.) I said, "Well, I typically try Excederin Migraine first." She said, "Well, that can cause problems too if used too often." So, should I just ride the pain out like a superhero or something?
Regardless, I took my Topamax and script for Dilaudid home and I have been depressed and crying ever since. Is it valid for me to feel this way or am I just reading this all wrong? I just feel like I've been living the last several years in the Twilight Zone.
(Sorry so long...this is very long. Just lots to say I guess. Thanks for listening!)
- MM3
Saw the specialist today, and while I was there for 3 hours I saw the doctor herself for about half an hour. I was nervous the entire visit and on the verge of tears because I didn't want to start out on another journey with a new doctor only to be disappointed again. I did feel like she and her staff listened to me, but somehow I left feeling depressed and, ...well, underwhelmed. She asked how I've been feeling lately, and of course I explained that mostly I've had severe back and shoulder pain with whooshing and pressure. But, after the eye exam she said my eyes looked good and she didn't see papilledema. She said that I had PTC, but I don't have it now. (???) She said that she thinks I also suffer from hemiplegic migraines...(Duh). So, given my current symptoms...quick question...without doing an LP, how can she say I had PTC 3 months ago but don't have it now based on an eye exam??? I feel like TJ a little bit. Am I in Pseudo-Remission? When I asked her about the possibilities of empty sella and/or mentioned that I had this clear fluid running out of my nose all the time, she kind of blew it off and said, "Hmmmmm." I had taken a CD of my MRI from my March hospital stay, when I was diagnosed. She said that it shows a whole body scan but they left out the brain. So, instead, she pulled up a MRI I had done last October. (Which isn't as relevant.)
She is starting me on Topamax, one tablet at bedtime for a week, than two, than three...etc. I took my first tablet tonight and have experienced some chest "aching" and tightness...should I be worried? Before we left her office, my husband asked if she was going to give me anything to help control pain should a HA occur. She said, "Like what?". (Huh???) I said, like something to control pain. She asked if I've ever used Naproxen. (IS SHE SERIOUS???) I said...ummmm...yes and it doesn't help. Than she said, "Well, even though it is contraindicated for hemiplegic migraines, we could start you on triptans. They say they can't be used for hemiplegia, but there are no studies to back that up." (Again...Huh???) I explained, that early on prior to being told I had hemiplegia triptan meds were tried and they failed. So, finally, I came out and said...can you please give me a prescription for Dilaudid since that seems to help? She said, "Yes, but, I don't want you taking it everyday. Only use it for severe pain." (Felt like I was being accused of drug seeking again by the supposed PTC specialist. My husband was even freaked out.) I said, "Well, I typically try Excederin Migraine first." She said, "Well, that can cause problems too if used too often." So, should I just ride the pain out like a superhero or something?
Regardless, I took my Topamax and script for Dilaudid home and I have been depressed and crying ever since. Is it valid for me to feel this way or am I just reading this all wrong? I just feel like I've been living the last several years in the Twilight Zone.
(Sorry so long...this is very long. Just lots to say I guess. Thanks for listening!)
- MM3
Also, do your headaches feel better when you lay flat than when you stand up?
Sounds like the specialist wasn't very special. I'm really sorry, and if I were you, I'd keep looking for answers. I don't think she's the right person. Have you tried getting recommendations from the foundation for someone in your area?
Hugs, sweetie. We're still here for you.
I agree with Autumn that your specialist wasn't very special and after waiting soooooo long I can only imagine your disappointment. Maybe you need a road trip to Ohio or somewhere that has a real PTC doc. Since you have had some correspondence with IHRF why don't you send them an email and see if they can recommend someone.
As for saying you had it but dont now that is strange. I guess that if she had access to your medical records and saw a dx she could say that. Reminds me of my first optho visit when he called my neuro a quack cuz I didnt have papiladema therefore I didnt have PTC. Huh?
Sorry to hear this was such a dissapointment but a diaudid script is a nice thing so not all is lost. Hope it lasts until your find your next doc.
TJ
PS How does it feel to be me?
I am so sorry, I know that you have been waiting for this appointment for so long, and this Doctor doesn't seem to know anymore then the last. I agree with TJ maybe you should think about the road trips because it does make a difference when you have those specialist that do know what you are going through, Sweetie. I wish I could hug you and give you a good shoulder to cry on.
When you have those hemiplegic migraines on top of the ptc it is not fun, and then not to have a doctor that understands is a added problem. I went for years with that, and I wish you didn't have to go through the same thing.
Take care, and if there is anything at all you need me to do, (except call a hit on the doctor they frown on setting that up on the internet:) Blessings, Karen
Autumn: To answer your question...Yes, I do occasionally get a metallic taste in my mouth and at the back of my throat. As far as if my HA's feel better lying down than sitting up...if I remember correctly, yes, I think they do. IRONICALLY, the new doc (specialist) called me today and said, "I have a question...Tell me about the drainage from your nose. How severe is it? What is the consistency? Do your HA's feel better lying down or sitting up?" So, maybe she isn't a bad doctor. Maybe she was just distracted yesterday. I guess she re-checked my file and/or spoke with her nurse and picked up on it and called me to ask. She said we would have to look into that further.
I also told her that after taking the Topamax, I had the chest tightness, nausea, dizziness and that I have had a HA all day and haven't been feeling well. She recommended that I cut the pill into quarters and start with 1/4 tonight and see if it's any better. She said, "The goal is to make you better not worse."
Still confused by the visit, but, her call made it a little better.
TJ: Thanks for responding...and BTW, it sucks to be you! :) Can she say that I don't have PTC now based on an eye exam without an LP reading??? IDK. How are you feeling anyway? How is life with the new shunt?
Karen: Don't worry, I won't ask you to take anyone out...at least not yet. :) Thank you for the constant support. The good news is that my husband was at the visit with me yesterday. When I got upset and the doctor had left the room he was good for a laugh. He said, "Hey! Let me check your eyesight. Do I look hotter in lens 1 or 2? Do my pecs look larger in lens 3 or 4? Does my butt look juicier in lens 5 or 6?" And if you could see my husband, who looks like comedian Kevin James, you would understand why through the tears he had me falling off my chair laughing. So, I'm okay. But, of course, I know I couldn't survive this nightmare without the support of you and the others in this group. So, thank you.
I see the specialist again on the 15th of July so, we'll have to see how things go. But, certainly, if I don't feel like things are working out I'll have to try out a doc at OSU.
MM3
Of course, that might not be what you have, but that's why I asked about the fluid and the laying down vs standing up with your pain. I wonder if they can test the fluid to see if it is CSF?
When does she have you taking the Topamax? I was told to take it right before bed and I could be crazy, but I swore I read the same thing on the Topamax website. This helps quite a lot because you don't have to deal with the crappy side effects all day - at least not until your body adjust to it and they up the dosage.
I'm glad the doctor gave you a call back. I'm wondering about your headaches though and maybe this may be something more serious than PTC with the drainage. My headaches are worse when I'm lying flat and get some better when I get up. My Neurologist told me that PTC is worse when you are flat because the fluid is building up in your brain, but once you stand up, it allows the fluid to drain down to a certain point like gravity. That is probably why the doctor was asking you this. My doctor has me sleeping on a wedge to try and help me since my first symptoms were waking up with the headache from you know what.
Please keep us informed, but I am very concerned about the drainage. I know it has to be the cerebral fluid, because I was having the problem with taste after my eye surgeries and when I mentioned it to the doctor, he told me that was sometimes a common problem for the fluid to drain down into the taste buds.
Hugs to all of you!
Liz
Liz: With my PTC headaches I definitely feel better when I am sitting up, however, with my regular migraines I feel better when I am laying down. This is just one of the ways I can tell the difference between the two. I've noticed that recently the drainage has been better so...maybe I am in a pseudo-remission???? Hard to tell. But, I absolutely believe there is something to the drainage that I've had in the past and I am mostly concerned about what TJ had mentioned in another post...CSF Rhinorrhea: Spinal fluid leakage from the nose (rhinorrhea) is a result of high intracranial pressure erosion of the bone separating the skull from the nasal cavity. YUCK! We'll see. I'll keep you updated.
Thanks for the thoughts and well wishes.
MM3
I recall a somewhat hilarious facebook conversation about how to um... "test" your um... "nose drainage" for a metally flavor. My point now, is to remind you that this conversation was AGES ago! Next time you talk to your doc, say "My snot tastes metallic and I want you to test it for CSF." Don't wait for the doc to put two and two together. You knew what you were talking about when you told her the symptom.
Go be assertive!
Bax
I think it is very valid for you to feel upset, you have been to so many Dr's and just to find one who will take the time and listen to you is not too much to ask for..plus you need pain control and she doesn't seem very aware of your issues, its like she didn't even read your history before she saw you...though your hubby sounds hilarious.
I wish I was there to help you with all of this and be your pt. advocate..it is very hard to advocate for yourself when you feel crappy or are in so much pain. I'm kind of out of it right now, but I wanted to say that you deserve the best and have a Dr. who will treat you with respect and help you in anyway possible feel better, plus to trust your instinct if you think this Dr. is okay or not...I wish I had trusted my instincts on some Dr's I have had. You are in my prayers, and many, many Blessings, Jazzy.
Jazzy: Sorry you're out of it right now. I hope everything is okay. You are always there for all of us sometimes I forget you are sick too. Hang in there my friend.
MM3
Jazzy