I found out in 1993 that I had ESS, but was told by the neurolgist I saw at the time it was nothing. That it was a anatomical defect and would cause no problems in my lifetime. Now I find out after reading finding this online quite by accident, that I may need to see another neurologist and endocrinologist. I am female 53 and have suffered for years from obesity (and now morbid obesity) and high blood pressure. I stopped having periods at age 42. Which I thought was odd. I am constantly fatigued. I have symptoms that sometimes mimic MS but have been previously told I don’t have that. I can’t regulate my body temperature. Which I thought was menopause but I am not so sure anymore. My teeth hurt most of the time that I have given up drinking cold beverages all together. I have constant sinus infections until recently when I started on XanGo a mangosteen juice. I cannot stand or walk for very long but have a L5-S1 disc degeneration. I have had spinal blocks and radio frequency and still can’t walk. However, I am having constant headaches and God forbid I get angry my head feels like it is going to explode. Like something is wrong in my head. Has anyone had a similiar experience? Does anyone know of any good doctors in Michigan? Thanks for listening. Anja
Hi … I have ess secondary to a car accident. Since then my cerebral spinal pressure has been way too high causing headaches, pressure and dizziness. Have you had a lumbar puncture to check the csf pressure level? I am now on acetezolamide which is most frequently used for mountain climbers to reduce pressure on their brains as they ascend mountains. It works similarly for me helping to keep the pressure better. Actually I see my neuro tomorrow for a check up.
Best of everything to you…
Hi … I have ess secondary to a car accident. Since then my cerebral spinal
pressure has been way too high causing headaches, pressure and dizziness. Have
you had a lumbar puncture to check the csf pressure level? I am now on
acetezolamide which is most frequently used for mountain climbers to reduce
pressure on their brains as they ascend mountains. It works similarly for me
helping to keep the pressure
better. Actually I see my neuro tomorrow for a check up.
Best of everything to you…
Hello my name is Kimberly and 33 years of age and I have some of the same issues. I was diagnosed with ESS last year and this is how they told me… you have ESS which is a rare brian disease, but that it’s normal. OKaaaaaaaayyyyyyyy NORMAL but rare hmmmmmmmm how does that work??? is what went in my mind. Anyway they have no clue about it because its rare and on that note they have nothing to tell us.
All my test come out normal for thyroid, hormones and everything the physician and endocrinologist have takened. They say everything is good just to not eat so much carbs. I was so angry because I do not eat that much let alone carbs. They blame me and think I am over eating and thats what is causing all the problems. I am 4’11 and 199 pounds. Never in my life have I ever been so overweight… I was even sick before I got over weight. I have headaches every day…get stressed out easily, high blood pressure, get low blood sugar symptoms once in a while, feel anxiety sometimes and cannot lose my weight even on a diet and I am extremly tired all the time. I also do have a low immune system, I get sick easily and I am sensitive to medications. If it has a rare side effects I will get it. One time the doctor told me maybe you are depressed and you need to be put on depression medication. I said I am depressed because nobody can help me out and only go by the blood test and not how you feel and somehow investigate these issues out. It seems like people with ESS basically have the same symptoms but no doctors have heard of it. All doctors should go to these forums and learn from the patient not from books only. Anyway I have not found anyone who will help me out all I can do is take it one day at a time and thank God I have my kids in my life because I have thought many times to just end my life… but it’s the wrong way not the right. I would never think of it but when your sick everyday almost you feel like there is no hope in the world. I am glad for the support on here anyway.
God Bless everyone : )
I have had similar experience in the UK. I was being treated by the chief endocrinologist at a large hospital in London. I had an appointment with a houseman and he told me my MRI scan showed ESS, I asked him how I could still be alive? he said he wanted to find out and carry out studies for his thesis.
When I went back a month later for a follow up appointment I saw the Chief endocrinologist. He was flicking through my file which was about three inches thick, he asked me what was wrong and what treatment I was on. When I told him about ESS he said “poppycock, if you did’nt have a pituitary gland you wouldn’t be alive”.
He reprimanded the houseman and my study did not go ahead. What a plonker!
To cut a long story short I now attend Barts and have been seen by a leader in this field but I am still tired and despite tiredness being a side effect of the drugs and according to some sites a side effect of ESS, my specialist says it cannot be.
All I know is if I am going through a tired period, even If I go to the gym and start exercising my eyes just want to shut.
So where does that leave me. At the moment I am on a never ending quest for my own treatment and am taking amino acids to boost the levels of HGH production which should increase energy levels. If anyone else knows the answer let me know, meanwhile I’ll sleep on it … zzzzzzzz