Acromegaly

In 01/04 I was found to have a pituitary tumor (Acromegaly), was followed up by Endocrinologist, Neurosurgeon and had  Transsphenoidal resection on 2/26/04 to remove the tumor which was Pituitary macroadenoma.  Since this surgery I have complained about head pain, lack of energy, extreme tiredness and some faint/dizzy spells.  The head pain is not like a headache but more of felling that I have been hit in the head and it often is worse on pre-stormy or stormy days.  the faint/dizzy feeling is not like vertigo but more of a feeling that i am goint to faint although I have never actually passed out.  After these faint spells I get very, very tired and weak and usually have to lay/sit down for sometime afterwards.  I am followed by an endocrinologist every 6 months and take an injection of Sandostatin LAR
(20mg) monthly.  I also see a neurologist often for the faint/dizzy spells who has been treating me.  I have had hearing tests to rule out inner ear, Tilt table test, physical therapy, and recently a 3 day EEG study which did not show anything even though I had some of the faint feelings while on the EEG. Yhe Doctor thinks it may be Simple Partial Seizures and treated me with a couple of different prescriptions that I had more side effects with the medicene than the faint spells. None of the problems that I have now ever existed prior to the tumor being removed. My question is...is this normal for me to expeirence these feelings that I have, especially the head pain and extreme fatique that I have.  I had to get done work in February as I just could not cope with these issue and continue working.  I was exhausted all the time and it seems that I have felt worse in the last couple of years than I did the first two years after my surgery.I seem to have no motivation to do anything, lack of interest in things I used to enjoy, mood swings, the faint dizzy spells (sometimes feels off balance after these happen), seem to be very sensitive to hot and cold, have ringing in the ears (Tinnitus) and then developed high blood pressure to go along with all of this.  My life has changed completly as I always was very active (was a Maine State Police Officer for 20 years) and never took any time from work as I was always on the go.  This had slowed my life to a crawl and most days I feel like doing nothing and even if I do anything I usually run out of energy quickly to the point that i almost stumble over my own feet.  And yes, I had my last MRI on 2/07 and everything was OK then.  Also my bood levels are always normal as my IGF-1 is usually around 199.  I can not figure this out, it has my endro stumped on the fatigue and my neurologist stated to me that I am more of a guessof what my be causing these issues with me.  Sometimes I wished my Doctor could expeirence this so they could say, "Wow, something is definetly wrong about the way I feel".  Sometimes I wonder if my surgeon was as expeirenced as he was supposed to have been and maybe I am having some complications as a result of the surgery.  I look forward to hearing from you as I have been searching now for sometype of clue of what may be causing this.  If this is the results of the Acromegaly disease that I will have to live with that but it is difficult to continue with sometype of normal life feeling the way I do.  

Thank You,
Linnwood Hersey
P.O.Box 274
Oakfield, Maine  04763
***@****

[jules21]

Linny0228  When I read your story I started to cry and called my mother and read the whole thing to her. I read is the life I live everyday. I also was diagnosed with acromegaly and have identical symptoms. I go back and forth to my endocronoligists to my neuro doctor and I cant seem to get any answers as to why I feel this way. I feel so trapped and feel like no one understands how i feel. I often say to myself i wish the doctor could feel how I feel so they can understand. I feel like they are missing something. Iam so happy to find somebody that gets it. I hope we can get in contact soon. my email is ***@****