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
Since last April I've gained 35-40 lbs - with NO changes to diet or exercise either. My husband and I have puzzled over this, but haven't ever figured it out. And like you Bax - it was just about a year ago that the doctors discovered that I had an enlarged thyroid, but it has always tested as normal. I was having headaches as usual, but no visual problems at that time - and the headaches have been such a part of my life that I never thought twice about them. The neck pain started just a couple of months later, and a few months after that I started having the vision issues...which gradually led to where I'm at today.
I [third?] the group hug button idea. :-)
This thread proves me what I've been suspecting for a while...weight loss/gain is a very sensitive subject over here... Well, some of you already know my story. Losing 32 pounds in 5 months made a huge difference in my condition and I'm about to officially go into remission as a direct effect of the pounds I shed. As many of you, when my PTC was Dx on Nov 2008, my doctors recommendation were to lose at least 7% of my weight if I wanted to see improvement. Another doctor told me that 80% of the patients that lose at least 20% of their body weight do see improvement. If this is true or not, we are yet to know. But, which were my choices then? There was nothing else for me to do, besides dealing with the Diamox side effects, than trying to drop some pounds. I was somehow able to do it and I saw the rapid improvement in my condition. I can only say that it works for me. Also, I keep watching what I eat since I can fairly guess that if I gain those pounds back my PTC symptoms could strike me again.
As for previous weight history, this is it: I was VERY skinny my whole life. Skinny as in 130 pounds for 5'6" height. Then on Nov 2004 my thyroid went crazy and I had to kill it with radioactive iodine. Then I started to use the supplements (synthroid). I rapidly gained weight since I was used to eat everything labeled unhealthy in this world (pizza, sodas, junk food, fried food, fast food, you name it). My habits did not change as my doctors advised me. So I went from 130 to 180 in the next years. When my PTC symptoms started I was 170 and gained the last 10 pounds in barely 3 months. That's when the papilledema made evident that the migraines I've been having twice weekly had an explanation which was PTC. So, I did gained more weight after my HA's started but I've been gaining weight long before due to the endocrine problem.
So, what's the message. I here have to agree with TJ, it doesn't matter if it's a cause or a symptom, because if it's a cause (or looks like a possible cause as in my case) dropping the pounds will help. If it isn't then you should move toward another factor and try to do as much as you can do and be happy with your efforts no matter what's the outcome. I tried very hard to lose the previous 50 pounds in the past 5 years because I wanted to be as I was before the thyroid problem, but every effort I made did not help and frustrated me more. I really don't why I didn't succeed before and why I could do it now, but this last time for me it wasn't about being skinny again and wearing size 10 again (and not size 16 as I was on Nov 2008). It was about not losing my sight, my job and my life.
If PTC is a complicated condition, much more it is the subject of losing weight. So many books have been written, diets designed, programs and yet there is no certain magical method to overcome obesity. Every person should look and find which is the best (if there is any) that fits his/her needs.
We are certainly here to help us each other and shed some light to this oscurity which has each one of us here together in this group. Where's that group hug bottom?
From where I'm standing (which is on this side of remission) the word improvement is a bit fuzzy. Since December, I'd say I've improved. I've lost nearly 15% of my bodyweight, but I'm also on a slurry of medication. I'm not anywhere near well yet and it's hard to see how my weight is effecting anything. At least yet. But I try to remain hopeful about it.
(I'm going to take a moment to go off on a related tangent to complain... please disregard if necessary) What really annoys me is how there are some individuals I meet to tell me how lucky I am to have lost so much weight. I am sick and miserable and have lost all joy in food, but I am lucky. Sigh. Some people would rather be sick than chunky. What should be lucky is self-acceptance. Sigh.
Bax
I apologized in what was later described as a "retracted" statement, ONLY because I thought that perhaps what I had initially written COULD possibly be construed as a personal attack. My first posting here to TJ's recommendation that we read the "Danish" literature was, as always, appreciated. There was obviously a great deal of information there that would prove helpful when faced with a ER doctor who was unfamiliar with PTC. What I merely stated and still do, is that having JUST received a letter from the IIH foundation that stated that a recent study shows that weight gain is a symptom I was relieved to know that I wasn't crazy. That's it. I was relieved. As such, I was merely stating that the section of the Danish literature regarding obesity might be outdated. That's it. That's all.
However, I was truly concerned that by saying that I may have offended TJ somehow. Obviously, that was not my intention. So, out of concern, I immediately wrote a follow up to point out clearly that it was not my intention to be offensive. And, now, I'm realizing that it was a mistake to have apologized and to have stated that I had a knee jerk reaction because that would make it seem that I have something to be sorry for. Am I sorry because I merely stated that a more recent study regarding weight being a symptom brings me comfort as opposed to a 3 year old study that says weight gain is a cause??? No...I'm not....why would I be. I said I was sorry IF anyone was offended by what I said. But, I didn't do anything wrong here.
Furthermore, I will say that even with the extra 30 pounds....I am not obese. This is part of the reason they missed it for so long. My doctors have said that visually I don't fit the "profile". I have stopped the Diamox, because truthfully I feel like my chances are much better for losing weight if I can get out of bed and actually move. So I'll be working on that, along with eating vegetables, working out, and drinking 8 full glasses of water a day. Once I've lost 30 pounds....I'll either be in remission or not. I will keep you updated.
And while group hugs might be necessary for days when we're down...do we really need a group hug button because I said that I was comforted by a new study that says that my weight gain is a symptom....really? Was what I said truly that offensive? Seriously? No....really????
And just to clarify...it's not necessarily the subject matter that I feel passionate about as much as it is the feeling that by mentioning it that I need to defend myself. Regardless of your position on this matter, I hope the debate has offered information that you may not have otherwise known. For me personally, I don't know what the answers are...I just want to make sure that all patients showing symptoms whether thin or heavy are treated appropriately and that symptoms aren't ignored based on size.
Having said that, I will dismiss myself from the DS site for some time as I'm not sure that what I have to say is beneficial anymore. That being said, I truly wish healing, happiness, and success over IIH for you all. Even in my absence you will be in my prayers.
Much love,
MM3 (Khrystine)
I have been reading all the recent posts about weight gain and IIH. I think that the debates have been heated but we all are passionate about this subject. I understand that you might need to take a break, but I hope that you will come back soon. I value your opinion and the opinions of everyone in the group a great deal. Reading all the different opinions has helped me shape my own view points on the issue of weight gain and IIH.
I hope that you don't feel like everyone is against you because I don't feel like that is the case at all. I will not pick a side in this debate however I will say that debate on these is well needed. I just wish doctors would do this more, maybe they could figure out how to fix us. You are also in my prayers and I'm also wishing you healing, happiness and success over IIH.