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...
YEAH....I'm so excited I sent an email to the IH Foundation last night after filling out my registry. I asked several questions about my complex number of symptoms. I thought you all might be interested in knowing what information I was given.
Regarding my symptomatic history with PTC:
RESPONSE: "Your history is very complex from the point of symptoms a number of which are somewhat unusal for intracranial hypertension. However, some are characteristic such as headache, the swishing noise (pulse synchronous tinnitus),neck and shoulder pain,and the finding of papilledema and high opening pressure. Patients have complained of memory and cognitive difficulties and nausea and dizziness as well. Of concern is the clear discharge you mentioned from your nose. Spinal fluid can leak from the nose and therefore this drainage shoould be checked to see if it is CSF (CSF rhinorrhea). You mentioned an MRI but did not describe what was seen . Do you have an "empty sella"? This is also a not infrequent sign of intracranial hypertension and can be associated with rhinorrhea and since the sella is where the pituitary is located there can be changes to the pituitay gland itself and occassionally altered endocrine function."
One of my questions was regarding this occasional swelling that I get below my chin, and other swollen lymph nodes in my neck. This symptom started about the same time as my other PTC symptoms.
RESPONSE: "Recently it has been established that spinal fluid can leave the skull and drain through the lymphatic sytem ultimately down through the lymph nodes of the neck."
Of course, I asked about Diamox and why it may not have worked for me.
RESPONSE: "Diamox does not work for everyone but it does work for many. There are side effects that may cause it to be stopped such as loss of potassium which can be replaced with oral supplimentation.(Lasix and Topomax also cause low potassium). Low potassiun leads to severe fatique. Also it takes a while before the Diamox can work. So it is hard to judge whether the higher dose of Diamox would have worked if the side effects were controlled."
Weight gain...is it a cause or symptom?
RESPONSE: "About obesity..most believe that obesity is an associated cause while others believe the IH causes the weight gain. Actually we recently review research done in Sweden in our latest IHRF member's newsletter (InSight),(http://www.ihrfoundation.org/intracranial/hypertension/info/C39) that argued that IH came first followed by weight gain."
I am so excited that I have received this info. I hope that the information is as helpful to you as it is to me.
- MM3
Regarding my symptomatic history with PTC:
RESPONSE: "Your history is very complex from the point of symptoms a number of which are somewhat unusal for intracranial hypertension. However, some are characteristic such as headache, the swishing noise (pulse synchronous tinnitus),neck and shoulder pain,and the finding of papilledema and high opening pressure. Patients have complained of memory and cognitive difficulties and nausea and dizziness as well. Of concern is the clear discharge you mentioned from your nose. Spinal fluid can leak from the nose and therefore this drainage shoould be checked to see if it is CSF (CSF rhinorrhea). You mentioned an MRI but did not describe what was seen . Do you have an "empty sella"? This is also a not infrequent sign of intracranial hypertension and can be associated with rhinorrhea and since the sella is where the pituitary is located there can be changes to the pituitay gland itself and occassionally altered endocrine function."
One of my questions was regarding this occasional swelling that I get below my chin, and other swollen lymph nodes in my neck. This symptom started about the same time as my other PTC symptoms.
RESPONSE: "Recently it has been established that spinal fluid can leave the skull and drain through the lymphatic sytem ultimately down through the lymph nodes of the neck."
Of course, I asked about Diamox and why it may not have worked for me.
RESPONSE: "Diamox does not work for everyone but it does work for many. There are side effects that may cause it to be stopped such as loss of potassium which can be replaced with oral supplimentation.(Lasix and Topomax also cause low potassium). Low potassiun leads to severe fatique. Also it takes a while before the Diamox can work. So it is hard to judge whether the higher dose of Diamox would have worked if the side effects were controlled."
Weight gain...is it a cause or symptom?
RESPONSE: "About obesity..most believe that obesity is an associated cause while others believe the IH causes the weight gain. Actually we recently review research done in Sweden in our latest IHRF member's newsletter (InSight),(http://www.ihrfoundation.org/intracranial/hypertension/info/C39) that argued that IH came first followed by weight gain."
I am so excited that I have received this info. I hope that the information is as helpful to you as it is to me.
- MM3
Great info! Thanks for sharing. As you know I am a huge fan of IHRFoundation.org. This is just one example why. They are the most current about our condition and respond quickly to questions.
I am also glad to hear you FINALLY registered. Please everyone! It is a great organization and they need our help to find a cure so please please do your part and register today.
TJ
IHRF Ambassador
Thanks for posting this!
I feel alot less crazy, especially about the weight gain. I excercize each day, count calories, and never lose a pound. Now I know, PTC could very well be causing some of my weight loss problems.
Thanks Again,
Lucy
Lucy: I know, I know, I know. I too feel much better knowing that I'm not crazy! I watched as my scale has gone up, up and up over the last two years and I couldn't figure out what was happening. When I got this diagnosis I couldn't figure out what I did wrong. Glad to know that I didn't do anything wrong. I've always been somewhat health conscious and I couldn't figure out how I gained 30 pounds. Glad the Swedish figured it out! I feel much better about it all now!
Wouldn't it have been funny if SOMEONE wondered if your runny nose was actually CSF and asked you if it tasted metallic? LOL!!!!!!!
Bax
Concerned Snot-Checker... (Ewww...Maybe we'll leave that to the professionals, too)
http://www.aoneuro.on.ca/Articles/IIH-Review-Cephalalgia.pdf
And if are really curious there are 184 references sited that you can personally check out for more details. Definately a good cure for insomnia.
TJ
This Danish study from '06 still believes that obesity is the cause and weight loss is the cure. And...please note: this is not an argument I make to try and make an excuse for the 30 pound weight gain I've had since becoming symptomatic 2 years ago. It just is what it is.
What the medical community has come up with thus far as both cause and cure has been insufficient at best. The medications cause unwanted side effects and can make us toxic (although I don't discount that for a select few they have helped.) The surgeries can create complications and typically require multiple surgeries afterwards to fix the new problem you've developed since having the surgery that was supposed to fix the original problem.
I may sound pessimistic. But, as far as I'm concerned the medical community has yet to figure this out. So, I'll stick with the most recent data as opposed to going backwards. I am so frustrated with the constant guessing games. I am equally frustrated with being told and hearing from others here that their Neurologists or Doctors are blowing off their/my symptoms. What the medical professionals aren't saying is that they don't know. They have no clue what to do with us. Everything they do is a test. If it works...great. If it doesn't than, I'm sure they can find somewhere in medical documentation where it worked for one person. So, if it didn't work for you than, "Oh well....I've done what I can. Maybe you should find a new Dr."
Sorry, TJ. Don't take my comments here personally, because you know I am grateful for your friendship, knowledge, and support. I'm just po'd that nobody can seem to figure this out, and the doctor's in the field are equally as confused. AAARRRGGHHH....
Am I having a bad day????
Ummmm...yes. Sorry.
- MM3
Your moody friend
This is what happens when I have a knee jerk reaction to something and instead of just thinking about it I open my mouth. After re-reading what I wrote....it sounds so nasty.
Not my intention. Just a point to say that the Swedish says "It's not your fault". The Danish study says, "It is your fault." That is so frustrating and more importantly....painful.
I started gaining weight at the same time I started having symptoms. That has to account for something, doesn't it?
Additionally, as you have all read before, I am angry that my neurologist "fired" me from his practice because I kept arguing that what I was experiencing was more than just a migraine. While time would prove that I was right.....time would also go by without a diagnosis allowing for my symptoms and weight gain to worsen. Had my neurologist done the LP, had he listened to me, I may have been able to get treatment, and subsequently never gained 30 pounds to begin with.
I guess what I am ultimately saying is that the Danish report has burst my bubble, and that truly bums me out. That, TJ, is not your fault and I know was not your intention. As I said, please don't take my remarks personally. I'm not shooting the messenger here.
Again...I'm sorry for the pessimism. SORRY.
- MM3
Eternally regretful for letting my temper out of the bottle
I'm sure TJ will understand your frustration. I must admit my little bubble got burst too when I read the article, though there was tons of useful info in the article, so thanks TJ for posting it!
MM3, it's just that what the sweedish had to say made me feel like my daily excecize and calorie counting is not all for nothing...like somehow internally I am still healthy, it is just the PTC keeping me from losing actual lbs. and looking healthy externally.
This is an angering and frustrating illness. I'm heading toward my 13 year PTC anniversary, and while I tend to go in and out of remissions, it is a constant worry becuase I always need to be monitored.
Fortunately my current neuro thinks my weight has nothing to do with my PTC, but my primary care doc, obgyn all give me the obesity lecture and then give me the disbelief look when I tell them I excercize every day. GRRRRRRRR.....sorry for the rant.
Guess that's a sensitive subject eh?
No offense taken.
As I said it is a little old and new studies are being made which is good. And yes there are some inconsistencies but overall for some of those ignorant doctors out there who are clueless I thought it might be a useful document that describes our illness from an accredited source so that we do not get looked at like you have what? and told its all in your head.
Me more than anybody knows that IIH does not come from being overweight or being female or being in child bearing years because I am not any of those. In fact, the weight loss that I had from Diamox almost killed me from malnutrition. Thankfully I have put that weight back on and I look normal again.
And please lets not forget that no one person truly understands the hows and whys of our illness and that it impacts us all differently. To the point that weight loss is definitely a cure for some people and should not be ruled out as not helping improve symptoms until it has been tried and subsequently ruled out.
Its ok to have a bad day but please dont shoot the messenger for delivery old mail in a world where not much comprehensive new mail exists.
TJ
Your Sympathetic Friend, who is just trying to help us all.
Just posted this then saw your retraction so take my post for what it is.
You didnt shoot the messenger.
Thanks for the follow up post. I understand your frustration.
TJ
Quasi-good listener today
my Neuro, neuro-op and primary all agree that the weight is caused by the PTC, My primary and neuro made me smile with it because they say if it was weight related I would have all the other weight related issues, which I have none of.
Unfortunately my neurosurgeon is the idiot who thinks if I lose the weight it will all go away, forgetting that my worst symptoms were at a much smaller weight more than 11 years ago. My primary doc even thinks that the weightloss that he wants wont happen even with bypass surgery (Neurosurgeons answer so he doesnt have to be responsible)
Charlotte
It comes down to chicken or the egg questions, when you are really wanting to know about evolution or creation. (Which came first... no, where did either come from?) The brain is so involved with every organ system. Every breath. Every blink. Every thought and action. Imagine how hard that is to tease apart.
I remember hearing about a "set point" with regards to body weight when I was in college. (Don't remember what class, but I majored in psych) Basically, it hypothesized that we are engineered to have a certain set point that our body finds homeostasis at (environmental factors not taken into account). So we adjust ourselves, eating more or less depending on our needs.
Assuming this set point idea is accurate, could it be that IIH happens first, and the pressure effects the brain in the area that effects set point, as it does optic nerves, as it does hormone production, word retrieval, and spatial memory, and so on.
Or, is it weight gain, or being overweight (two different things), that triggers CSF production which causes the other symptoms. Do they know with any certainty? Can they point it out and say "see... this is where it starts."? They can't say they know it anymore than we can. Correlation does not imply causality. How frustrating.
I'm one of those nerds who might actually read some of those research studies, because I'm into research, and it's an important thing to find a well-designed study. Sometimes they are hard to find.
Bax
Now, can I say that part of this could be due to the pain and chronic fatigue impairing me from being as active as I once was? Absolutely. I am certain that has a good deal to do with it. I also believe that just as women who are going through menopause gain weight when their periods stop or become irregular...that the same might be said for us although we haven't hit menopause yet.
But, ultimately.....I know that my weight gain began when the other PTC symptoms started. So I will finalize this argument by saying that I know, without a shadow of a doubt, that for me personally, my weight gain is a result of PTC not vice versa. Whether that is due to hormonal changes brought about by elevated pressure, or due to my having had mono as a teen and epstein barr as an adult, or whether I have a thyroid problem or pituitary problem due to excess pressure, or whatever.....I don't know. But, I know that I wasn't gaining weight prior to the symptoms. And I am willing to bet that there are other women out there who have had the same problem.
That's all I'm saying. Now.....where is that group hug button Bax mentioned???
(Hey!!! That's when I met Mr. Bax! Too bad I like having him around).
Maybe we should write an email to somone askin for a group hug button. Until then I will stand in my front yard, swaying, singing wind beneath my wings!
Interesting that you mentioned the swollen thyroid with normal thyroid tests because I had that problem too! Hmmmm????