Empty Sella Syndrome and CFS: A Proposed Patient Study

February 12, 2011

Posted by Cort Johnson

Empty Sella Syndrome: A Proposed CFS Patient Study – We propose a study to possibly characterize the first anatomical abnormality in CFS – empty sella. Adin suggested this study based on his MRI records showing that a filled sella early in the disorder and an empty sella later on. I know of another person who’s has substantial sella abnormalities as well and their clinical picture is strikingly similar.

The sella is a depression at the base of the skull that holds the pituitary gland – the master gland of the HPA axis.

MRI’s are used to characterize sella abnormalities. How could an empty sella been missed with all the MRI’s ME/CFS patients have done? A small depression in the base of the skull, it’s often simply not looked for. An empty sella (or empty sella syndrome ESS) does not always affect the individual’s health but when it does it looks suspiciously like ME/CFS…We think of this as possibly one small piece of a complex CFS puzzle. Dr. Holtorf believes all the HPA axis problems in CFS lie ‘higher’ up in the axis; either the pituitary or the hypothalamus.

Secondary Sella Syndrome - Some people have primary ESS – a developmental problem. We’re interested in secondary ESS. Secondary ESS occurs when the pituitary gland regresses or basically disappears or gets pushed out of the cavity or shrinks in it after an injury, infection (?), radiation or some sort of pituitary gland dysfunction.

Symptoms – Individuals with secondary ESS due to destruction of the pituitary gland have symptoms that reflect the loss of pituitary functions, such as the ceasing of menstrual periods, infertility, fatigue, and intolerance to stress and infection. (sound familiar?). Empty enlarged sella is also often combined with primary thyroid dysfunction, obesity and female preponderance.

Some History

http://pituitaryadenomas.com/emptysella.htm

The term empty sella was first applied to an anatomic finding at autopsy by Busch in 1951. He found that in 40 patients with no known pituitary disease, the pituitary gland was severely flattened against the floor of the sella (5.6 percent of the series)…This latter condition resulted in a partially empty appearance. Busch pointed out that an empty sella was far more frequent in females than in males (34:6).

Although contemporary series suggest that the presence of an empty sella is fairly common (8 to 35 percent of the population), fewer than a third of individuals with the condition ever develop symptoms. Clinical studies of the symptomatic patients with primary empty sella syndrome have revealed a variety of associated problems, and it seems likely that several etiologic factors are involved in producing an empty sella.

Several things may cause it but!!!! it usually shows up one fairly distinct group of patients……and guess who those people are…

Despite this diversity, patients with primary empty sella syndrome are a surprisingly homogeneous group. Over 80 percent of these patients are women, more than 75 percent are obese, and the majority become symptomatic in the decade from age 40 to 49, with over 80 percent presenting between 30 and 59 years of age.

Two very interesting facts – most are women and the abnormality usually presents itself in middle age..and there is an increased incidence of obesity. And then there are the symptoms….Take a closer look

Symptoms - Initial complaints fall into three categories: neurological, endocrinologic, and systemic. Headache is the most common presenting symptom, occurring in 50 to 80 percent of these patients. Other neurological complaints include memory loss, balance impairment, dizziness, seizures, and rhinorrhea. Papilledema, decreased visual acuity, and visual field loss are somewhat less common (10 percent). Endocrine complaints leading to investigation include amenorrhea, galactorrhea, loss of libido, and diabetes.
‘Subtle endocrinological abnormalities’ are generally a hallmark of CFS.

However, subtle dynamic endocrine testing is able to reveal some degree of hypothalamic-pituitary dysfunction in up to 80% of the patients assessed. Only 31% of the patients were referred for endocrinological problems. In children evaluated for growth hormone deficiency, primary empty sella varies from 10% to 58%

Lab Tests

Empty Sella Syndrome

Significantly altered pituitary stimulation tests are noted in 30 to 50 percent of these patients. The most commonly observed abnormality (30 percent of patients) has been deficient growth hormone (GH) secretion during stimulation tests. Abnormalities in the secretion of adrenocorticotropic hormone (ACTH) (11 percent of patients), luteinizing hormone (LH), and thyroid-stimulating hormone (TSH) (15 percent)

Hyperprolactinemia and intermittent increases in prolactin (PRL) levels have both been associated with the primary empty sella, and as many as 25 percent of women with an empty sella have elevated prolactin levels.

CFS – almost all of these have been found in some degree or the other in CFS
Prolactin,for instance, is increased

J. Affect Disord. 1996 Nov 4;41(1):71-6. Increased prolactin response to buspirone in chronic fatigue syndrome.Patients with CFS (males) had significantly higher plasma prolactin concentrations and experienced more nausea in response to buspirone than did controls.

‘Sex Differences in Plasma Prolactin Response to Tryptophan in Chronic
Fatigue Syndrome Patients With and Without Comorbid Fibromyalgia’http://www.ncbi.nlm.nih.gov/pubmed/20384451 Results: Women with CFS alone, but not CFS + FM, showed upregulated plasma Prolactin responses compared with controls. There were no differences among groups of men. http://phoenixrising.me/forums/showthread.php?4381-Sex-Differences-in-Plasma-Prolactin-Tryptophan-Response-in-CFS-with-out-Comorbid-FM

Conclusion – we’re not saying ESS causes CFS but if we can show that a higher than normal percentage of patient demonstrate ESS – then we’re talking biomarker territory and a documented physical abnormality. We’re committed to exploring this further and we will be asking around to see if there is a researcher who would be willing to look at patient MRI’s..

The Proposed Study

Four questions:

* Have you ever been diagnosed with Empty Sella Syndrome?
* Do you have an MRI of your brain? (we need to figure our which views are best).
* Do you have MRI’s dating back to before you were ill or were taken very early in your illness?
* If you have an MRI’s would you be willing to allow a researcher to examine it/them?

Email me at phoenixcfs@gmail.com if you’re interested….

41 comments

{ 41 comments… read them below or add one }

Maija Haavisto February 15, 2011 at 6:17 am

I have clear pituitary problems, but I just had a pituitary MRI and it came back entirely normal.

A previous doctor had recorded my prolactin level as “normal”. Later it turned out to be something like 496 when 498 was the upper limit of normal in women my age. :-P

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Cort February 15, 2011 at 7:44 am

Like so much else in CFS – nothing is very simple is it? :)

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Denise March 18, 2011 at 12:02 pm

Not sure if you are looking for people interested in the conducting the research study or participants but Ihave an MRI and findings were “mildly enlarged, subtotally “empty sella”. MRI done for weakness, fatigue,vertigo. No old MRI’s. I incidentally have an enlarged thyroid.

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Cort March 20, 2011 at 8:03 am

Thanks Denise….the next step for us is finding a researcher interested in assessing these MRI’s. We’ll put you on the list.

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Denise March 20, 2011 at 10:11 am

I am also an RN and work at a hospital that does a lot of research. Maybe I will make some inquiries to see if there’s any interest

Robin Layfield April 4, 2011 at 9:47 am

I have a question I have a partial empty sella, and my hormones are normal. But, I am so fatigued and having some blurred vision because my eyes seem to be working against each other. I shake now from being tired. M cognitive thinking is bad lots of the time to the point I cant think of words. Im at my whits end. Im not sure where to go from here.

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Lynda Parton September 3, 2011 at 8:49 am

Hi – I have empty sella – found accidently following brain scan when I suddenly became deaf and suffered severe tinnitus. My hormones are OK but I also suffer rheumatoid arthritis and very bad visual problems = very blurred – no-one seems to know what to do with me !! I get exhausted all the time. I am 63 years of age and was diagnosed 3 years ago.

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cynlouhoo November 2, 2011 at 7:03 pm

My empty sella was found during an MRI to rule out more serious conditions such as MS. Interestingly, I didn’t request a copy of my MRI report and the specialist never told me about the empty sella finding at all. My guess is that she felt it was benign and not causing any of my list of troubling symptoms….now that I’ve done more research, I am not so sure! I am annoyed that nobody is taking this seriously. I most definately have CFS and I have been Dx with Fibromyalgia as well. I have developed a lot of cognitive problems over the past several years, but my doc always chalked it up to Fibromyalgia. I once had a very strange visual disturbance….kind of like a funky laser light show design in one eye……no pain. When I asked the doc about it, she said it must’ve been a “silent migraine”, though I have never suffered from migraines. I’m at a loss, but I am quite willing to be involved in research…problem is that I don’t have any MRIs prior to the sella showing up. I am eager to find a doc that might actually take this stuff seriously…..I haven’t had any tests dealing with my endocrine system to see if all is working well there. I am in Canada, so often it is very hard to get specialized testing without being seriously ill.

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cynlouhoo November 2, 2011 at 7:30 pm

I forgot to ask. How do we know for sure if we are dealing with a primary ESS or a seondary ESS?

Cort November 7, 2011 at 8:57 am

You are on the cutting edge Cynlouhou with these strange migraine like problems. A recent study suggested that this type of thing is not uncommon.

We’ve been unable to get researchers interested in ESS and CFS; they do seem to think there may be a connection but that its a subset of patients and they just don’[t have the funding to get involved. Hopefully it will come out over time. I

Lisa November 2, 2011 at 7:51 pm

Hi I was told several years ago while having an MRI for my neck injuries that I had Empty Sella, before this I remember complaining to my co worker about a swishing noise in my head. fluid like but this had gone away before having the MRI. Most recently I have been having sypmtoms since Friday dull headache with sharp shooting pains at times near fainting episodes, dizzyness or become imbalanced visual disturbances and short term memory loss I also have hypothyroidism for years as it also runs in the family however my last blood work up showed my tsh to be lower that it has ever been and my t4 to be higher that its ever been very unusual I have been on 150mcgs of synthroid brand name for years after several years of adjusting now its been lowered to 137mcgs. Could all this be related to Empty Sella??

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Cort November 7, 2011 at 9:00 am

Being an amateur I would hate to say one way or another. Its a very complicated situation. The pituitary gland plays a big role in the HPA axis functioning and in blood volume and other areas – so its a possibility; as to whether its actually the problem is a big question as some people seem to be able to function normally with this problem and others do not.

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carol June 10, 2012 at 9:03 am

My empty sella syndrome showed up on an extensive ca scanI My eye specialist ordered it after he found some abnormalites in a field vision test!! i hve had cfs and fibro for years,also hypothyroidism! I have some dwarfism[short fingers and hardly any toes] I have always been very active and i eat healthy foods with a smidgen of chocolate[ha] but I have fought with my weight problem for years and never seemed to be able to keep it under control!!I also get extremely fatigued,have bad migrians,and poor balance along with periodsof confusion or forgetfulness!!I never seemed to get that elusive thing called “second wind” and my metabulosm has always been very slow and I have low bloodpressure!!I could go on but you get the picture! i will be 69 this year so I have basically given up trying to lose weight,and instead I am trying to focus on keepin myself as healthy as I can! I have no diabetis,no high blodd pressure and no high cholosteral,so for this I am thankful!! Blessings carol

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Cort June 11, 2012 at 2:54 pm

Thanks Carol.Interesting…We’ve had trouble getting a study going but if we do we’ll be touch…

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Amy August 15, 2012 at 7:53 pm

Hi I am a 30 yr old female, diagonsed with ESS and hypothyroidism 3 yrs ago, its been rough trying to find proper treatment and Dr.’s who actually understand what’s going on. I have hopes that since I am finding this out so young that research will come through and help with a healthy and fulfilling life for the future. I have both MRI from before and after diagnoses and am currently seeking treatment in a city quite a ways from my home. I guess really its just nice to find people who understand exactly what I’m going through

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Nathalie September 27, 2012 at 1:11 pm

Hello, I have empty sella syndrome and a whole bunch of symptoms. A few years ago they removed my milk ducts because they could not explain why I started secreting “milk” from one of my breasts. I have migraines every day. I am on medication to control the tremors and the tachycardia. I feel like they simply put bandaids on all my symptoms. The latest is the urinary issues and the ovarian cysts. I have visual disturbances and brain fog. I have reached a point in my life where I can no longer cope with them ignoring me. They recently decided that I simply have acute anxiety. My hormone levels are low but the doctor said don’t worry at least you are no where near menopause. The problem is my FSH levels were prepuberty numbers. My growth hormone was low as well as my ACTH. I could use some help finding a Doctor who will understand what is happening to me and who will be willing to treat the problem not only the symptoms. I would also be willing to participate in the study if it means helping others.

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don November 9, 2012 at 9:52 pm

im a male 55 years old with empty sella,ive had several mris and cat scans,my health is declining,headaches,i cant handle any stress at all,very cold one minute and overheated the next,im on synthroid,hydrocortizone,hgh,testim gel,its like having the flu everyday of your life,please let me know if there is help for this condition.

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Penny January 3, 2013 at 6:51 pm

I am a 55 yr old female with hypothyroidism since 1998. Recently told I had a pituitary adenoma found on a cat scan. MRI results shows empty sella syndrome. Thank you Cynlouhoo for explaining that “funky light show design in one eye” I have been trying to explain that for a while. Have pain all through my body everday, including constant headaches with stabbing pain on one side of my head, and always tired. Have not had any other diagnoses. Thanks for giving me direction to speak with an endocrinologist

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MishMash January 9, 2013 at 7:48 am

Regarding Empty Sella Syndrome: There is a fairly compelling study theory out there that ME/CFS has it roots in mild “hydrocephalus”. Which means: people with this illness were born with too much brain pressure from the spinal fluid squeezing inside the skull.
- This is attributable to the fact that many patients have Ehlers Danlos Syndrome, or some similar genetic weak tissue disorder. So the Cranial Venous Duct, and other conduits emptying the brain fluid are floppy, twisted, narrow. The fluid pressure just builds up inside the skull. It squeezes all parts of the brain, especially the brain stem, AND the pituitary.
- If you have mildly over-pressurized brain from birth, all you need is some kind of viral or environmental stressor to cause the already-narrowed Venous ducts to shrink even further. Pressure on the brain goes way up, thereby squashing the pituitary flat. This is when you officially begin to experience classic ME/CFS symptoms, such as:
– Dysautonomia, or POTS/OI/NMH, whatever you want to call it.
– Endocrine, and deep HPA dysfunctions. For women that would be reproductive and pelvic issues for women, and over-sensitivity to the environment, such as MCS.
– Post exertional malaise would be a form of over-reaction by the dis-regulated HPA.
– Many patients complain of difficulty sleeping, irritablilty, depression and other anxieties. In fact, many patients with pre-existing hydrocephalus tend to have “low-level anxiety” and are given to mood swings, highs and lows. Hence, this gives doubters and numbskulls (Wessely) the mistaken belief that our illness is rooted in psychological issues. This is simply because the brain is suffering from too much pressure.
– Empty Sella Syndrome provides some proof that at least some patients have too much fluid pressure inside their brains. Also, excess brain fluid would explain why certain patients exhibit Chiari Malformation. Because the pressure of the brain is squashing down the brain stem.
–The researcher expounding this theory believes that patients of ME/CFS also have Mast Cells issues, leaving allergic or over-sensitized, and chronically inflammed in several parts of the body.
–In addition to ESS and other classic ME/CFS issues, many patients have cerebral spinal fluid leaking from their skulls into their ears, noses, mouths. Tinnitus, or a need to allows be unclogging your stuffed up ears (like when taking off on an airplane) that there maybe cerebral fluid oozing into your ear cavity. Such leakage might also cause balance and equilibrium issues.
– The researcher has also found that such patients, from years 1 to 5 months, had difficulties when their bodies were trying to seal the plates of the skull. This was due too high brain fluid pressure. She has done study on adult head sizes to show ME/CFS heads are more frequently largeer than the norm.

The theory is quite interesting and novel, and given the lack of evidence for any other hypothesis, it is worhty of study.

For the full study: Please go to website “prettyill.com”. Listen to all the vids and see if any of it pertains to your case.

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Lisa January 25, 2013 at 1:42 pm

I had a pituitary tumor macroadenoma removed in 1997 and have had regular MRI’s every year. I recently started having new vision problems. I had my visual field done and failed it. I have passed them all since my surgery except this one. My eye dr. Said my vision has changed alot since my last exam so he ordered my MRI. I got it done on Jan 21st of this year. It says that I have a prominent CSF signal area in the sella. The impression is an intrasellar arachnoid cyst or more likely empty sella turcica syndrome. All my other MRI’s have never said anything like this. They say normal study. My neurologist don’t seem concerned so I will be seeing a neurosurgeon for another opinion. My eye dr. Seems to think something is wrong and my vision sure has changed so something is going on. I have diabetes and neuropathy so I already suffer with balance issues and other health problems that I wouldn’t know could be related. If this is so normal like my neurologist said, then why didnt all my other MRI’s show this? My vision is very important to me and I know what I went through when I had that tumor so I’m not taking any chances. Also I’d like to say that the tumor I had was non secreting and all my hormones stayed normal. I was diagnosed because my menses just stopped and I was having headaches with vision changes. People know their bodies, and I wish doctors would listen to us.

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Maggie January 28, 2013 at 8:52 pm

My Sella is expanded and Pituitary tissue is compressed into the floor of the sella and along the floor. Remainder of the contents of sella are CSF density indicative of an arachnoid cyst. There is an appearance of the sella being partially empty. This is all documented by NIH on an MRI from last week. I have copies. I am not diagnosed with CFS, but have thyroid issues, visual issues, endocrine issues like hyperaldosteronism. I had the MRI due to what I percieve as cognitive decline, auditory processing problems, brain fatigue and I attributed it to a history of TBI. I would like to know of any research or clinical trials or studies in this area. I have a history of several years of having a spinal fluid leak that was blood patched after I ended up with menningitis. I found an article that linked spinal fluid leaks, menningitis, to empty sella or compressed pituitary issues. Let me know what you hear or come up with….I’d appreciate it!

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Latona February 20, 2013 at 3:45 pm

I have Empty Sella, which was also found whilst trying to rule out MS. My Dr never even told me of it. I was just sitting reading over the reports in the waiting room and found it. I went home and looked it up. The next dr’s appt, I asked them specifically if it would contribute to my headaches I was having. They told me “No”. In fact, they acted like they didn’t even know what it was. I had already been diagnosed with Fibro by then and was getting angry with them and wanted answers. I am extremely fatigued. I can take B12 shots, and drink two five hour energy drinks over top of it and still not be able to move. I can’t think of small words, can’t remember what to say at times when I answer the telephone. I can’t form sentences correctly. The back of my head feels like it’s been beat with a baseball bat and my neck, and right shoulder must of been mangled by a pride of lions. I have all over body pain. Pins and needles, palpitations, fire, unexplained weakness in the limbs, jerking, twitching, TMJ, my eyeball feels like it’s gonna pop out when I have the headaches. I get dizzy, nauseated, blisters in my mouth constantly, sore throat on a regular basis, low grade temp chronically, depression, weight loss, then weight gain….no one can tell me why other than “it’s your fibro”. I can’t stand light a lot, loud noises, smells, etc. That isn’t even the end of my symptoms, just some. I also had the left side of my thyroid turn into a huge tumor, had to take that out, yet they say all is fine and well? If your pit gland is smashed like a pancake, then I would imagine, something isn’t right about that? I’d also be afraid that it would affect your thyroid and parathyroid? Anyone know?

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Shanna March 19, 2013 at 11:35 am

I have recently been diagnosed with empty sella syndrome. I have gotten progressively worse since Nov and was admitted to the hospital where I spent 5 days. I have insomnia, extreme fatigue, hot sweats, sweating through clothes, fever occasionaly, vision blurriness, loss of balance, nausea, vomitting, severe pressure in back of my head unlike your ususal “migraine” its a severe pressure, I loose balance, I have a loss of words, short term memory loss. I have been a relatively healthy fit 35 yr old woman up until I became sick in November. They did do an MRI where they diagnosed it here in Montana while I was in the hospital. They prescribed me toprimate and I became so sick off of it that I quit taking it. I have a hard time believing that this syndrome has no treatments or possible relief from the pressure of the fluids? My whole life has completely changed in 3 months due to this illness. Any help or suggestions would be helpful!
Thank you
Shanna

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Jill October 29, 2013 at 12:14 am

Shanna, I, too, have empty sella syndrome. Many of your symptoms sound like mine, either, now or in the past. Please see a doctor who specializes in the pituitary, if possible. This would be an endocrinologist. I have found that many endocrinologists do not know the pituitary very well. I am not a doctor, but was a nurse before I got sick over 20 years ago. I just got diagnosed last year, after I insisted that they do an MRI. I live in the Phoenix area, and there is a pituitary specialist here. They are usually located in the larger cities. You may need to travel for treatment if there is no qualified doctor in your area.

I sounds to me that you could very well have hormone deficiencies related to the empty sella. There are 8 hormones secreted by the pituitary gland. I have deficiencies in four of them: follicle-stimulating hormone, luteinizing hormone, thyroid-stimulating hormone, and growth hormone. I am taking hormones to replace what my body isn’t making, and I’m very slowly getting better.

With this rare disorder, you need to be your own advocate. You’ve got to fight for your health. You need to find a doctor who will do a lot of labs, and, if needed, other tests, so you are diagnosed accurately and completely.

I wish the best for you.

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Shanna May 17, 2014 at 12:48 am

Thank you Jill i just came across this a year later. I am feeling hopeless that I will feel better again. Im a single mom who works 2 jobs/16 hr days for 3 of the 5 and I have to work to provide for my family. I go to work feeling horrible and have been referred to an ENT becauae the cyst on my sinuses they werent worried about dec 2013 is now covering my entire left side of face and covering nasal cavity. I had gone in because of my vision becoming blurry, nausea, head pressure and he wanted to do an mri on the arachnoid cyst (empty sella) on my brain to see if it has gotten larger. I went in for Mri and went to primary afterwards for a sinus infection that wasnt going away (2 antibiotics later) and the radiologist phoned dr while i was in the office to tell him that is was huge and obstructing my nasal cavity, My primary dr said the ENT should remove or biopsy it. I waited anxiously for my ENT apt even though i had a few nights of sleeplessness and trouble breathing…i didnt want an ER bill. So I get there only to be dissapointed because the dr was a jerk. Said i had sinusitis that smoking was the cause of all of these problems, i told him i have been really trying to quit and he said dont try just do it. he didnt offer me any prescribed med to help me quit or any suggestions on how to quit, everytime i tried to tell him the pain/symptoms i have..he would say quit smoking. i started cryjng and said i work 16 hr days, im a single mom, i need relief so i can continue to work, im exhausted, nausea,throwing up fever chills, night sweats, popping like on a airplane/ears but with my face and back of head. He said we will do a cat scan and get u back in a month. I said my dr said its huge and covering my face and nasal cavity. he said well there is a cyst but i dont treat them unless you have persistant symptoms . i said thts why im here i have been sick for a year now and last 4 months its been the worst. I have never been exhausted by 11. I had kept a journal of my health history and symptoms and i was so frustrated when he kept cutting me off with his quit smoking comments i didnt even get it out. He didnt care. I have 2 huge bumps on back of ear for 4 months that have grown. I asked if he could look at those. he said they are just cysts. he didnt give me cream or do a biopsy on them, he said the cyst didnt look cancerous and there was nothing he could do unless i had continual symptoms and that is probably just my brain (migraines) that was causing me discomfort. I was so upset i cried the whole way home. Im trying very hard to quit smoking but the stress and pure exhaustion of this sickness is not helping. I feel like i am gonba to neurologist and he is gonna say you just have migraines. Im in a neverending circle of no help and no relief. It isnt a migraine its intense pressure. I just pray i get a dr who will actially care and listen because i dont know how much longer i will be able to work like this. Im on empty. I am gonna call my primary dr monday and see if i can get in to an edocrinologist. Im on facebook champaign, il if u want to look me up i would love to have people to connect with that can understand how this feels and knows how frustrating this is.
Thank you Jill wishing you better & healthy days ahead

Nicole Marie Xavier July 17, 2013 at 4:58 am

I have primary empty sella and have always had severe headaches and fatigue and TMJ problems. Swelling of the pituitary gland during a recent pregnancy caused secondary sella to develop and the the gland is flattened. Now experiencing progressively worsening eyesight and hearing disturbances and hormonal imbalances. Seeing pituitary endocrinologist who has prescribed thyroxine with some improvement in mood and skin. Waiting on neurologist. Study would be great. All of the research questions at the beginning of this proposal are applicable to me.

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Taunna Jarvimaki August 3, 2013 at 12:39 am

Has this study been completed? If so, what were the findings?

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Sarahjane patterson August 9, 2013 at 11:06 am

I have recently been diagnosed with primary empty sella and am waiting for a neurosurgeon appointment. My symptoms are headache, dizziness, disturbed vision, my body temperature is erratic and I seem to be sweating more. I also have mood swings but don’t know if that’s just frustration at waiting to see the surgeon! All my blood tests have come back at normal levels. I look forward to reading this study and finding any help I can get

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laura co September 6, 2013 at 1:39 am

Hi. Just recently having seizures during asleep at nightime since 2010. Prior to my first seizure, I took piracetam –together with cherrifer– for 6 months because my friend told me that was safe to take as brain enhancer. 2 months after i stop taking, i had my first seizure. I never had any eye vision problems yet. My eye doctor diagnosed, in 2005, that i have an eye astigma since high school days i always have headache. and lately, found myself to be forgetful on somethings. But been reading articles how to get rid of this –and its very helpful to remember things! I am just thinking this might be due to a lot of things in my head. No secretion experience or any difficulty in sleeping. I had an EEG last 2010 but accdg to the physician who attended to my case, all were normal. I made a list on my seizure attack, if i eat only, with preservatives products, i dont get enough sleep nights before and certain food i am not sure their content.. Just when i thought i am doing great, 9 months after i had another seizure. I had my MRI on brain area and found that i have an ESS.. I am doing research and reading for my case. Hope you could help.. Among signs that i have read: headache (if i dont eat on time) seizure (list food earlier, no enough sleep). Hoping you could help. Thanks..

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Melanie Mixen December 5, 2013 at 11:01 pm

I have pseudo tumor cerebri and started after high dose of levothyroxine. I also have pituitary engourgement. Every time they up my Levi my head gets worse. Would love to tell more . I had 6 surgeries in 6 months and I’m very sick.

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Jan Ede February 3, 2014 at 4:50 pm

I was diagnosed with SESS. It started with migraines and hair loss (round patches/bald spots and then I had memory issues…I couldn’t remember my name when someone asked me for it. I have vision issues lately as well yet the last vision screening was 20/20. I was not obese when diagnosed nor am I obese now. My blood work has always come back irregular. The doctors said it was caused by tumors that put pressure on my pituitary then the tumors dissipated. A couple of doctors thought that my husband had brought something back with him from Saudi during the Persian Gulf War (kinda like agent orange). The doctors also said that my pregnacy accelerated the tumor growth. For the last 7 or more ( I’ve lost count)years I have had fluid leaking out of my nose (right nostril) and my short term memory is progressing. I was instrycted to see an Endocrine specialist and have an MRI done yearly. I did up until my insurance ended. The only thing that changed on those MRIs were more residual tumor findings. I have no insurance now and I have young children who I would love to be around for a long time. I always say it’s mind over matter but recently the memory issue has me concerned. Would I be eligible for research or testing? I would volunteer.

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Leslie February 16, 2014 at 1:17 pm

I was diagnosed with ESS back in 1995 after the birth of my second child. It was a rough pregnancy and I had early labor from 31 weeks. During the pregnancy I had hurt my back then quickly developed classic migraines with aura ( the light show) I was convinced at times I was leaking CSF. Eventually after trying everything to deal with he migraines ( including acupuncture, cortisone shots into the base of my skull) and many others an MRI showed ESS. Every doctor I have ever asked stated that the condition did not have anything to with my headaches. A few years go by and my headaches get better but I now have extreme fatigue and pain. In 2009 I was diagnosed with CFS and Fibromyalgia. I have gained 40 pounds without increasing my food intake. Last week while undergoing a neck sonogram they found 2 nodules on my thyroid. My T3 and T4 came back normal and now they want me to wait 6 months before doing another sono. I am convinced that the ESS and my thyroid and my CFS/Fibro are all related. I have my after MRI but that is it. Anything I can do to further research to help anyone I would be glad to volunteer. Thank you for all your posts. I am seeing an endocrinologist this week. I am not waiting anymore. God luck to all who suffer.

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Andrew March 17, 2014 at 2:41 pm

I am male, 63, BMI 25, and live in UK. Had MRI to rule out auditory meatus. Symptomless – I never get headaches and have no endocrine problems. Consultant asked a few questions and almost apologised for calling me in. No treatment, no specific advice.

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Elizabeth lattanzi April 7, 2014 at 10:27 pm

I had severe headaches for years and they were considered atypical migraines. My diagnosis came after an MRI about 5 years ago. I had serious double vision one night while driving. The double vision continues but it never been as bad as the first time it happened. I’ve had several CTs of the brain and two MRIs. Falling became a huge problem but no one thought there was any causal relationship. No one is able to find a cause of my drop attacks. I was stared at 30 my periods became scant and I was having problems with my sex drive. My headaches started at about this time. I worry about leaking CSF.

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Linda Acre Luce June 10, 2014 at 5:24 pm

Im almost 60. female and I discovered ESS when I went into have my vision checked as I had terrible vision woes. She tested me along time and then said she would like me to have a MRI. I did and she was right. That was about 16 yrs ago. Ive since seen a doctor to has kept up with me. Last time she said it was almost all gone. That was 8 yrs ago. She said my facial swelling had nothing at all to do with ess. Yet another doctor said it was. Most days I hide in my home and it scares me to look in a mirror;( Along with the swelling I have head aches. eye problems and I feel very tired and lethargic. I Am now obese and have diabetes. help is very needed here.

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latasha August 19, 2014 at 9:33 am

I there a cure for this

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Elissa September 12, 2014 at 4:19 pm

My son was diagnosed with ESS at 13. I had been very worried about his short stature as he basically stopped growing around 9. We went to see the endocrinologist dans was sent for an MRI before being put on growth hormone. This is when they found the ESS. We have also been diagnosed with hypothyroidism as well. I am looking to find from others, any help or guidance when dealing with an adolescent that is the age of 14 and a body of a 10 year old, no puberty yet.

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Judy C October 1, 2014 at 12:33 am

I was ordered an MRI (September, 2014)because of a mass I was seen to have on CAT scan, but the MRI showed enlarged lymphatic tissue (the probably cause of my sleep apnoea) but no cancer, also it was noted on my MRI report – partially empty sella. My symptoms as of 2003 rapid weight gain (30lb in 30days) several vertigo attacks lasting mins to days, lethargy, blurred vision intermittently, also intermittent memory loss. I appear hypothyroid, but my levels are on the lower end of normal, I am insulin resistant and weigh 104kg, when I used to weight 47kg. I feel the heat terribly, I was told by my physiotherapist I have Fybromyalgia, luckily I do not suffer with headaches. The Doctor that examined the MRI report, completely disregarded the partially empty sella, didnt even say what it was, it didnt even come into the conversation. I have just looked it up because I wanted an explanation. What should I do now?

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Judy C October 1, 2014 at 12:36 am

What is the treatment for it? Can it be treated by alternative medicine or only traditional? Is it a precursor to brain tumor or alzheimers

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Cort November 7, 2011 at 8:58 am

Unfortunately that’s going to be a mystery until someone takes up this subject.

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Shanna March 19, 2013 at 11:38 am

Hopefully somebody does because i just want to be back to myself. I am so tired of not feeling good.

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