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...
I'll try not to make this wordy but apologize ahead of time if it gets long.
I've seen my Neuro 2x since the initial finding by my eye doctor of paps a year ago. At the time I first saw him he seemed ok, there is a language barrier but it isn't too bad. Definitely lacking in the bedside manners but not rude. He continues to say just lose weight (I'm not trying hard enough apparently) and I will be fine. Even after the trip to have the emergancy LP in May when I was having vision problems he didn't want to see me just said call if you have problems. He didn't even request my meds to be raised that was my primary care doctor. At my first appt he told me just to make sure I keep seeing my eye doctor every year. I said well he is just an optomitrist (sp?) not an opthamologist and he said that was fine. He never requested any blood work or anything after putting me on Diamox. I was never given any information or warnings, do's/don'ts or anything of that nature on the condition. (hence me taking an forbidden antibiotic). Anyway after being on this forum and another I hear you guys talk about seeing your neuro's more frequently, and seeing NO's or at least an opthamologist on a regular basis and I am wondering if he is doing his job...not that he is bad but maybe just isn't familiar enough with it. Insurance isn't a problem with me, we are military and while it is a hassle I can get into other neuros but I don't want to bail ship for for no reason with him (plus I'd have to drive 2 hrs to go to a new neuro cause he is the only one in the area).
Having never had to deal with a specialty type doctor before other than ENT docs I don't know what to expect. Should I be expecting more out of him? I saw him in January and then had a phone consult with his nurse in May when he ordered the urgent LP, never heard anything back from them despite several phone messages left after the LP and finally 3 wks later got a call from the nurse saying just plan on coming in at your next appt Aug. 29th. My primary care doctor has checked my eyes every couple of months to make sure the paps aren't back but my neuro doesn't know that.
I guess I'm just curious what kind of care you guys get from your neuros and if this is normal or should I be looking for a new neuro?
Oh and for the love of pete is there anything I can do about my hair falling out? I really can't take how much hair I am losing....I know this is totally off the wall from my whole post.
Thanks, Danielle
I've seen my Neuro 2x since the initial finding by my eye doctor of paps a year ago. At the time I first saw him he seemed ok, there is a language barrier but it isn't too bad. Definitely lacking in the bedside manners but not rude. He continues to say just lose weight (I'm not trying hard enough apparently) and I will be fine. Even after the trip to have the emergancy LP in May when I was having vision problems he didn't want to see me just said call if you have problems. He didn't even request my meds to be raised that was my primary care doctor. At my first appt he told me just to make sure I keep seeing my eye doctor every year. I said well he is just an optomitrist (sp?) not an opthamologist and he said that was fine. He never requested any blood work or anything after putting me on Diamox. I was never given any information or warnings, do's/don'ts or anything of that nature on the condition. (hence me taking an forbidden antibiotic). Anyway after being on this forum and another I hear you guys talk about seeing your neuro's more frequently, and seeing NO's or at least an opthamologist on a regular basis and I am wondering if he is doing his job...not that he is bad but maybe just isn't familiar enough with it. Insurance isn't a problem with me, we are military and while it is a hassle I can get into other neuros but I don't want to bail ship for for no reason with him (plus I'd have to drive 2 hrs to go to a new neuro cause he is the only one in the area).
Having never had to deal with a specialty type doctor before other than ENT docs I don't know what to expect. Should I be expecting more out of him? I saw him in January and then had a phone consult with his nurse in May when he ordered the urgent LP, never heard anything back from them despite several phone messages left after the LP and finally 3 wks later got a call from the nurse saying just plan on coming in at your next appt Aug. 29th. My primary care doctor has checked my eyes every couple of months to make sure the paps aren't back but my neuro doesn't know that.
I guess I'm just curious what kind of care you guys get from your neuros and if this is normal or should I be looking for a new neuro?
Oh and for the love of pete is there anything I can do about my hair falling out? I really can't take how much hair I am losing....I know this is totally off the wall from my whole post.
Thanks, Danielle
You should really see a neuro-opthamologist. According to my MD and regular opthamologist anyway, because they eye is considered brain tissue. They said it's treatable but you really have to watch it.
My NO has me going to see him again this week. I was there last month. It's going to be regular visits for a while. They need to check the eye scans and field of vision. I really like him, he's a cool guy.
About the hair- Mine is falling out too right now. It was falling out like crazy last summer and I thought it was from the brazillion blowout, but it wasn't breaking, just falling out from the root. They told me to see an endocrinologist. They actually told me PTC can be caused by a metabolic disorder. You may want to look into seeing one as well.
Because I'm new to this, I don't quite have enough information to answer your question just yet, but I do offer my support and I can share with you what I've seen my neuro do. Since my dx in Feb I have seen him 3 times and he has called my home randomly to check in on me or return my phone call at least 4-5 times. He did the same for my son who has another type of neurological disorder. I also felt my neuro may not know much about IH after reading some of the posts on here (seeing me often is not enough when pressure and paps are elevated for so long). I'm sure you will get a lot of great info from everyone here.
The very best to you.
Hi there. I have been on here infrequently lately, but have been a member since early last year. I have been through a lot of treatments and I think I can give you some in site. Sorry it has taken me so long to get to your post. I know when you are worried about something it's nice to have an answer sooner rather than later, my apologies.
To get to you you questions. My neuro was pretty much the same way, a little better, but overall now helpful. I would try and seek out a new neuro or a neuro opthamologist. The bonus of having an NO is that they not only will be able to keep track of your your papalidema, but they will know more about PTC (about headaches, weight loss, and other treatments that may work better for you). I cannot say this for a fact because I only went to an NO once. This is because I do not have paps and my GP was making up for what my neurologist didn't do for me.
I don't know much about your story, again terribly sorry, and how severe your condition is. I have had 24/7 headaches that were moderate to severe. I was tried on almost all of the medications for PTC, Diamox was the only one that somewhat worked for me. I had no life, I lived in my room (18 years old, so my parents take care of me). I tried an LP shunt and now have a VP shunt. What my doctors didn't do, until I met with my neurosurgeon, was to find an under lying cause for the PTC. My neuro tried some of the more obvious reasons, none of which were the cause. In fact, my NS was the one to discover that I had Arnold Chiari Malformation (the underlying cause for my PTC).
Since you say it is more of an inconvenience to go see another neurologist, you may want to try to see an NO in your area, see if he or she is more on top of your condition and wants to work with you to help you to get better rather than saying "you need to lose weight". I too was told to lose weight, that it would "cure" me, so I did. I lost 40 lbs. The thing is, that when you start to really try and lose the weight and say you lose 10 or 20lbs and you don't notice the slightest of
difference... It is most likely not a weight related issue. (it also depends on how "over weight" you are as well, if you are not all that over weight you shouldn't have to lose that much. I lost 25% of my body weight...my neuro told me that because I was on diamox and that I had lost weight I should be feeling better. She also wanted to pawn me off to another neurologist, lol.
I am sorry you have been through so much, with little help, no answers, and frustration.
As far as your hair falling out, I will be the one to tell you the unfortunate news that it is in fact due to Diamox. I was on 1000mg-1500mg and I had hair falling out left and right. I am lucky to be blessed with a lot of hair, so it never really showed. It was upsetting and I too wondered why. Even being off of Diamox it took a while for the hair to slowly stop falling out, I would say a good 1-2 months.
Much love and hugs sent your way.
I am sorry you are another, of the many who suffer from PTC.
If you have any questions you would like to ask me feel free to ask me here or on a private message.
Mallory
Weight loss will lower your inter cranial pressure, this is a fact, but it may not be enough to bring you back down to your normal pressure. This is why they suggest weight loss, at least that it what my NS said. My opening pressure was low for someone with PTC, 25, and with no paps. The thing is that my normal is 10, so 25 is way too high. I learned this when they would do an LP and told me the opening and closing pressure. I have had a total of 3 LPs, first closing was 12, second was 10 and the third I don't know. I felt best when they lowered it to 10, that's how I knew what my "normal" was.
Mallory, thank you for your help! Interesting how you know what is your ideal pressure. I've had two LP's the first I don't know what the closing pressure was but I felt great afterwards my opening had been at 28. The second, my opening was at 30 and the closing was 18. Both were done by the same doctor so I don't think it was technique related but the second one I had horrible low pressure headaches for 4 days, to the point I was almost ready to go get a blood patch.
I am very blessed to not have this PTC very bad (right now) but I do still get some headaches and a LOT of face pain/eye pain which I never know if it is from my wretched sinuses or my pressures. As for losing weight I can't lose weight to save my life even with hyperthyroidism (which should have the weight falling off of me). I really believe I can't lose weight because I can't push myself far enough. I can walk 4 miles every night (different routes) with my neighbor and she will complain of her legs hurting afterwards but my legs never hurt, they don't even feel like I've worked out at all BUT by the end of the 4 miles I can barely breathe and my face is so red (some of it is allergies and I am sure some of it is from the Diamox). Anyway I feel that is part of the reason I can't lose weight...cause I can't ever push myself hard enough to work those muscles. Loosing weight through dieting is a joke for me because I don't like to eat so I have to push myself everyday to hit the 1000-1200 calorie mark everyday so I don't go into starvation mode and the nutritionalist said what I am eating is "perfect," and my being overweight definitely isn't genetic....my family all look like they are anorexic (they aren't but they are that tiny).
As for the hair loss, to me it is so discouraging because the Diamox is working and the side effects I can handle...well except the hair loss so I don't see me going off it anytime soon and at this rate, I will be bald by Christmas. I'm tempted to go back to taking multivitamins because that did help but I stopped because everyone was saying they are bad for IIH/PTC people.
Thank you again for all your help! I'd be lost with out all of you!
Danielle
Doesn't this disease just keep getting better and better? :(
As far as not being able to lose weight, your metabolism is working to burn off a lot of calories, even without all of the exercise. This may sound crazy, but maybe your body still isn't getting enough nutrients through food (maybe you need to eat even more calories?). You could try adding cliff bars to your diet, they are high in protein and have a fair amount of calories which is nice if you don't like to eat but need the calories and want something healthy.
I have the opposite problem, in a way, as you. I have insulin resistance, so whenever I put anything into my mouth my body wants to store it as fat. I used to have to exercise six days a week playing soccer for two hours and be on a diet to not gain weight. I basically lost the weight through a medically supervised program where you ate no more than 800 calories (yes, it is almost starvation only the supplements had all the nutrients I needed to no be in starvation mode). Oh! In case you didn't know this fact already protein burns much faster than carbs..so if eating more doesn't work, you could try adding lean protein or protein supplement bars. Just an idea.
Best to you!
Mallory
You should read the "How bad should it get before you go to the ER" thread. Think that might help you understand what is or is not an appropriate response.
Everyone needs to realize is you can and will go blind if you do not get this disorder if you do not get proper treatment and that's the mildest thing that could happen.
PTC/IIH does directly kill the patient but it can indirectly. Every day,hour, minute you are in pain or anything other than normal then you are putting additional stress on your body. With more stress comes high blood pressure which causes Strokes.
The moment you experience the slightest visual change/disturbance you should notify your eye dr and your Neuro Surgeon. From that point your doctor should start talking to you about shunts.
Plz Armywife read that other thread completely. It has great info that can help you with talking to your docs better and it talks about how to stand your ground.
Courtney A.
carrington_350@hotmail.com
A Brazilian Blowout is straightening of the hair that last for a while, so if you have curly or fizzy hair you don't have to try to straighten it every day. ;)
I am surprised the doctor left your closing pressure at 18. My doctor takes it down to about 7, and I felt awesome for 3 days