Any hope? Hypothalamus

[mjay915]

Please let me know if there's anyone at all who has an answer,for my condition of Hypothalamus. It is a horrible condition to suffer through,and living through everyday is very hard to bear. Amy,i sent you a message,regarding our conditions. The doctor's tell me it takes time,but,i don't know anymore. i have been ill for 4 months now,and can't stand much more. Living in New Hampshire,i also have to suffer throught the cold winter days,and going outside makes the condition all that much worse. Hypothalamus makes you chilled to the bone,and gives you flu symptom feelings,yet,as it gives you feelings of cold,you sweat profusely.Please help!!..If anyone has an answer,please help!!

[21taters]

My heart goes out to all of you who have posted here.  I have other hypothalamic issues (not the disease you talk about here), but thought I should mention several tests/issues that I have encountered in trying to treat my various hypothalmic problems.  I have an "allergy" to changes in temperature (so I get "welts" and my throat itches and starts to close if I get overheated too quickly, and same if I get cold too quickly).  For a year I was put on a medication called an anti-cholinergic (which helped blunt my bodies "overreaction" to changes in temperature).  I dont' know if this would be of any benefit to any of you, but felt I must share it.

Also, I have a rare condition caused by the hypothalmus acting up during rapid-eye movement stage sleep.  I suddenly experience severe inflammation in my brain and wake up in extruciating pain (about 4 times nightly).  I was told that my diurnal (daily/nightly) body rhythms probably got confused from several years of shift work, traveling through many times zones frequently, then moving 3100 miles across the US and trying to "adjust" to a new time zone.  A potent antiinflammatory taken 2 hours prior to bedtime helps about 92% of the time.

Finally, I have auto-immune hashimotos thyroiditis (no one else in my family has this) and also polycystic ovarian syndrom.  Both are endocrinological disorders, which also have ties to pituitary/hypothalmic function.  Hashimotos has caused hypothyroidism, and when my thyroid gland is out of whack (low TSH) I get very cold with very dry skin.  I wondered if your physicians had not tested your TSH;  But also,some people can be hypothyroid at levels that are in the "normal" range for other people.  Taking thyroid supplements and keeping my thyroid function at a very low TSH level (.5-1) is the only way I feel better.  Anything over a 1, the symptoms return (chilling cold, dry skin, weight gain) as well as autoimmune sequelae (hair loss, etc).

I am so sorry to hear of the "hypothalamic disease" and hope that all of you can get to the root of the issue, and get some relief.  

[dmuich]

I have the same chilly coldness and muscle cramping off and on throughout the year so I started on GABA for the anxiety and depression and get some relief from the chilling/body temp trouble. I am going to try D3 for the coldness, sometimes I just shiver indoors with the house at 80 degrees fh. I remember this off and on my entire life and I am 46.
Also I have suffered from the depression and anxiety from this condition and sometimes the hopelessness has been very heavy, and I do seek support from my 12 step program friends.  The Chilly feeling comes on sometimes very fast and can stay for days or even weeks, and I remember several seasons of this throughout my life and I am just hearing that others have the same junk going on ------ you guys are the best for thischat room of wonderful hope. please keep in touch.
Later
Doug

[sharkymcmuffin]

Wow, it'difficult reading all of your posts. I certainly understand what you and your families are going through.  My sister has been living with me for a year and a half now.  She was recently told that she has a "mass that's spreading" on her hypothalamus.  She's been experiencing some of the following symptoms:  
-Always cold
-balance issues
-fatigue
-Sleepy all the time
-poor eyesite
-slurred speach



Given the news, we decided to have the mass biopsied.  Told that she'd spend Two days in recovery... back to work in 4-6 weeks some people go back to work in two... My sister spent 4 days in recovery and almost 7 days in Rehab.  
Its been a month after the biopsy now.and she's much worse now than she was before the biopsy.  The Dr's are calling this disease Neuro Behcets Disease.  Each time I speak with the dr's or Phys assist they keep saying we have them stumped and they've never seen this before.  So our next stop is to John's Hopkins in Baltimore.  

Personally, I don't think she has NBD... From most of the stuff i've read about NBD, most people complain of joint pain, headaches, skin or body lesions, but she doesn't suffer from any of those symptoms.  I first noticed something "wrong" with her back when she lived with my wife and I about 7 years ago.  That was when i first noticed her eyes bulging from her eye sockets.  In the time before the mass diagnosis, she had an ovarian cyst removed from her.  From what i've been told, the hypothalamus controls the "girlie" parts, too.  

Has anyone else experienced anything like this?  Oddly enough, I noticed amos150 is from Altoona, PA.  My sister and myself grew up a couple minutes outside of Altoona.  Any input or help is very much appreciated!

[amos150]

Dear Doctor,  I have been through a battery of tests.  Have been to a neurologist and had an MRI, cat scan, blood tests, skin patch test, EVOKS tests etc. etc.  Went to an endrocrinologist in Pittsburgh at UPMC...had blood tests, urine tests, cortisol level tests, thyroid work up etc. etc.  Every test was negative.  I am actually a pretty healthy person.  The only thing they could come up with was a faulty hypothalamus.  The doctor in Pitt said if I wanted to I could go to a neurologist that specializes in the Hypothalamus...I didn't realize there was such a thing.  Anyway, in the meantime I lost my health insurance so I can not presently afford this.  I did have a period where the coldness went away....but is has returned once more.  A major side effect of having this condition is depression.  Depression because there doesn't seem to be a "cure" depression cause it severly affects your quality of life and you can not enjoy life fully.  It is a burden on your family and friends as there is nothing they can do to help you.  
Thanks for replying to my friend Michael's(mjay915) who I met on this site and my postings.
Pray for us,
Amy

[DrNoopurMD]

Hi,

Sorry to hear about what you are going through.
Hypothalamus controls our sensation of thirst, hunger, body temperature, sex drive and release of hormones from various glands. Treatment of hypothalamic disease depends upon the cause. Incase of tumors, surgery or irradiation provides relief. Hormone deficiencies are treated by replacing the missing hormones.
A detailed medical history is required to give a clinical opinion. I hope you have consulted a neurologist.

[amos150]

Wow, I can't believe I finally found someone who also has this condition.  I actually had a reprieve from it for several months but it has returned this week again.  It is bitter cold here in Pennsylvania also, we are to go below 0 tonight and tomorrow the high will only be 8 degrees.  I went to Pittsburgh to endrocrinologist and have been to a neurologist....he told me I just had to learn to live with it...which I left the office in tears and was completely depressed.  I am going through the change of life so I thought it might have something to do with that...so I went off of my hormone replacement pills.  That is when I suddenly started feeling "normal" again....but here I am again...it is starting to act up again.  I am all bundled up drinking hot tea...and now I am starting to sweat.  It is so hard to live with this...as you know.  I feel your pain...I can hear the desperation in your message.  If it helps at all please know that someone else out there is struggling with the same thing you are.  Please write anytime you want.