541196 tn?1293552936

not doing well

Ok, I just need some support.  I am not feeling well.  I am an emotional wreck.  The last few days I have experienced severe dehyration with a pulse of over 130.  Extreme dizziness with bouts of almost falling or near fainting.  Crying at any thought of anything not perfect.  Lactation has resumed with 3 weeks of dostinex.  I think some of my problem is due to the fact that my Lexapro has run out and my damn primary dr. has left the practice and I can't see her until the old office transfers the files to her which is now going on 12 weeks!  I think most of it is withdraw symptoms of the lexapro (dizziness anyhow). I don't know what to do.  My endocrinologist approved my last refill, but said my primary would need to do it next time... and I can't get her too without my records.  

I am really feeling down (not dangerous down, don't worry)... just like world is crashing around me.  I came home early from the office today and was a bit concerned if I could even make the drive with how dizzy I was.  As I type I am crying like crazy.  

I just want to feel better and get to the bottom of all my crazy wacked out hormones.  
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Avatar universal
Hi Sarah,

I hope today is a better day for you, as I know this comes a few weeks after your original post. I feel your pain and can completely relate.

Most recently, I've had days that I have been in a dangerous place, mentally. Thankfully, I have my family to think about and on better days, I'm able to rationalize and intellectually bring this rationalization into the bad days.

I was diagnosed over 2 years ago and I've done a ton of research over the years.

I only just found this forum yesterday and I think the support that we are looking for is right here in front of our eyes. Besides the Pituitary Network, this is the first place that I have found real people explaining the same symptoms and daily problems that I experience.

Though I wouldn't wish any of this on my worst enemy, it does help to know that I'm not alone in all of this and there really are people who understand.

One of the toughest things for me to deal with has been MANY doctors telling me that nearly all of my 100+ symptoms are NOT related to my 1.5cm (at last check 6-08) pituitary tumor that has also displaced the infundibulum (the stalk that connects the pituitary gland and hypothalamus). But it seems strange to me that ALL of my symptoms which led to the first MRI started within 6 months of the diagnoses.

Though my research and every bit of my instincts tell me this is all related, it's still tough to hear so many docs say there is no relation and several suggesting psychological help... especially when my own family insists that the doctors 'know more than I do" and I begin to doubt myself. The world starts to seem very scary and lonely.

I also have visual problems from time to time. The MRI's show that the tumor is very close but not definitely impinging on the optic nerve. Two visual field tests have come back inconclusive. Naturally, this has be scared out of my mind that I'm going to wake up blind some morning.

For the first year, I was put on the 'wait and see' list. The one neurosurgeon I seen, insisted that the tumor wasn't causing any problems, therefore there was no reason to remove it. I was also on Dostinex at various doses for the first year, which accomplished nothing.

Due to a lack of resources, I don't currently have any insurance, therefore, I'm not receiving any treatment or monitoring for the tumor or hormones. I've been self employed for the last 10 years and since I've felt so aweful the last few years, my finances are really screwed up -- so I'm not even in a position to attempt any kind of financial assistance right now.

While I was being monitored, all of my hormones were in 'normal' range... with the exception of an occasional slightly elevated prolactin level (32-38)

I think I've been on just about every anti-depressant out there, with no success. I also take Klonopin for severe anxiety and panic attacks that seem to rule my life, amongst many other problems. The Klonopin helps most of the time but is just a band aid that lasts a few hours.

Needless to say, I know exactly how you were feeling the day you wrote your post. I was disappointed to see so few replies but over the last 24 hours, just reading other's posts have helped me and provided a great deal of support. I hope you have found the same here.

Love, respect, have faith & hope...

Helpful - 0
745975 tn?1258960922
Sarah! I am so sorry you are going though this! It sounds horrible. I have some of those symptoms but not as severe as you and even with my symptoms it can cause me to be an emotional basket- case so I can totally understand where you are coming from!

Sometimes the most frustrating part is not have a 100% clear diagnoses and treatment plan.

I hope you can get the medicine you need! maybe your endo will be willing to fill it one more time if you explain the circumstances!

As long as you know it's just hormones, maybe you can do your best to not let it get the best of you... Remember it's not YOU it's the HORMONES! :)
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