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...

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Begining to notice a pattern

armywife96
armywife96
Now if I could just figure out how to stop it, life would be good. The first 9 months of IIH I was doing really well aside from the one instance in May when I got very sick. From the end of May to the begining of Sept. I was doing better each day (I reffered to it as the farther I got from that episode the better I got). But Sept, Oct and Nov, I've detected a definite pattern to my days of feeling good or feeling bad. (by feeling good I mean, no eye problems, no whooshing sounds, headaches are minor, etc) So much so that I can actually see it in my school work. I will score 100's on assignments except if they fall during that 4 day window then I score 70-80's. The content isn't any harder or any more difficult to understand and I can go back and look at it and be so frustrated at myself, because I know the correct answers and put something completely ridiculous down at the time. I've noticed during those 4 days (consistently 4 days long) I am extremely depressed, cryinig, the whole 9 yards usually for no apparent reason, and so physically exhauste I can't stay awake. Increasing my diamox to 750mg helps some but somedays I still feel like I could go up to 1000mg to really get relief, where on the normal days 500mg is more than enough and sometimes I can even go as low as 250 mg. I can't figure out what is causing it because while those 4 days are cyclic it does not coincide with my cycle. I have to assume it is hormone related but I don't know what I could be doing that could be throwing my hormones so out of control...and what hormone is the offender?
I guess in keeping with being thankful this November, I can be thankful that I am going through it now and hopeffully (if it follows previous months patterns) it will be over in a day then I will be ok to take my final exams next week. I am not saying that I don't have headaches everyday but they are usually very minor for which I know I am very lucky but this really has me baffled. I'd like to stop it, if it is something I have control over!
magnatomamma
magnatomamma
That is very interesting. I am guessing when you say the days do not line up with your cycle, you mean it is not during your period. You should plot out your cycle, and headache cycle together and you may get some answers. Different hormones spike and taper off during different times in your cycle. I can't remember what they all are now, duh, but I did a lot of research back in the day when I was having problems getting pregnant. I had to keep charts of my cycle and did find out some interesting information.
Keep us posted if you figure anything out! I hope it passes and your exams go well. I know I am as dumb as a box of rocks sometimes and can not make a decision. I can't imagine how frustrating that would be during homework or tests!
Amy
mary1973
mary1973
I was recently told that I am premenopause, yet so young, I feel those pangs you're going through. Ovulation and the fluctuations in hormones during that time, along with cysts breaking in the ovaries., Im telling you you have to be suffering like I do, I think they are naming people like us with Premenstrual dysphoric disorder (PMDD), it can last weeks before your period starts, weeee lucky us!
mary1973
mary1973
Oh the hormone is estrogen, in my case atleast.
armywife96
armywife96
Yes, Amy I am referring to my period. Mary that PMDD you mentioned is interesting. I read a few articles on it and some of it sounds very much like what I go through and some of it is opposite of what I experience. There were a few things that caught my eye that makes me think it probably isn't though. they said people with PMDD have low tolerance to pain and stress. The doctors have all commented on my unusually high pain tolerence. I cut off my finger in a door back in February and while yes it hurt I was standing around talking and joking to everyone while they figured out what they were going to do....for 8 hours before I was given pain meds! Stress is like my middle name, between being a military wife with multiple deployments, family problems (not immediate, but with siblings), school, work (when I did), IIH, and general crap that always seems to find me, I am told I handle stress extremely well, I would be one of those people who doesn't know how to react under calm, non-stressful situations. I know not everyone has every symptom though. I am always suprised when I have symptoms of my hormones being off though because according to lab work mine could be the poster child for the middle range of normal. Well except for my thyroid but that is another story...unless this is somehow related to that but then I would be back to what is triggering it for those 4 days.
I will definitely tuck this information away and ask my endocrinologist about this when I see him next. Thanks again for your help!
SeaSprite
SeaSprite
Armywife,

Do you think that they may be able to do something to balance out your hormones? Wouldn't be great if that was the answer to everything?

I'm not sure changing diamox dosage up and down over the month would help much. It takes days if not weeks for diamox to consistently help, at least for me. For me it actually takes a couple of months.
armywife96
armywife96
Sea, I wish they could figure out what is up with my hormones. Sometimes I think I felt so much better before they started treating me, wish they would have just left me alone! lol. I had no obvious symptoms other than the papilidema (which was giving me no visual problems), until I started treatment...now my symptoms seem more prevelant...probably coincedience but frustrating.
I have always said I liked being on birth control because I felt better on it (which is backwards from most people). But everything about me is backwards from the way things are suppose to work. I have hyperthyroidism yet I'm overweight. I work out a lot and eat right yet can't lose weight, they have said my hormones (on bc) were all perfectly balanced (estrogen, progesterone, etc) but if being on bc influences IIH (due to increased estrogen levels) it doesn't explain why after I went off bc it got worse during my period.
Who knows :-) I guess as long as it keeps me guessing I will have some form of entertainment! :-)
Danielle
mary1973
mary1973
Armywife i may have asked you this before, but have they done MRI with contrast looking at putuitary
armywife96
armywife96
Yes, when they did my MRI to diagnose IIH it was with contrast but I don't know how closely they looked at the pituitary. It is the only one I've ever had done. Had a ton of CT's for my sinuses but only the one MRI. Several years ago they talked about doing one because I was having so many problems with my cortisol levels but it was so sporadic (one day I would be normal and a week later have a reading of 77 (high norm was 20 on their scale)) that after they suppression test came back normal they chalked it up to coincidence that 3/6 I had done where high. I asked my endocrinologist about it when I was first diagnosed with HYPER thyroidism but he claims if I had anything wrong with my pituitary my prolactin levels would be off first and mine are perfectly normal, so he says it is fine!
Part of the problem is if I see the doctors at the military clinics, they change every 6 months so you are never with the same doctor for very long and they all want to start from the begining. So you are literally starting over every 6-8 months. I saw a civilian doctor when we were in CO he said he thought t was all related to allergies and my body's handling of that kind of stress (excess cortisol, etc). Who knows though! :-)
Danielle
mary1973
mary1973
Did you get thay mri disc amd report? Can you het your latest labs? This is the same crap thy were doing to my daughter, you can call her endio ask if she will consult you via email and phome, send her your labs, mri report and they can bill your insurance, its worth a try. I know i told you they found adenoma in her pituitary.
The info below is from the National Endocrine and Metabolic Disorder info service concerning high cortisol.
Dexamethasone-corticotropin-releasing hormone (CRH) test. Some people have high cortisol levelsbut do not develop the progressive effects of Cushing's syndrome, such as muscle weakness, fractures, and thinning of the skin. These people may have pseudo-Cushing's syndrome, a condition sometimes found in people who have depression or anxiety disorders, drink excess alcohol, have poorly controlled diabetes, or areseverely obese. Pseudo-Cushingsdoesnot havethesamelong-term effectson health as Cushing's syndrome and does not require treatment directed at the endocrine glands.

The dexamethasone-CRH test rapidly distinguishespseudo-Cushing's from mild cases of Cushing's. Thistest combinestheLDDST and a CRH stimulation test. In the CRH stimulation test,aninjection of CRH causesthepituitary to secreteACTH. Pretreatment with dexamethasone prevents CRH from causing an increase in cortisol in people with pseudo-Cushing's. Elevations of cortisol during this test suggest Cushing's syndrome.