Serious Pressure migraines and more

I am kind of at a lost, seen many doctors in the last 3 years with NO help. I have had migraines my whole life and normally can control them with mild pills but i've had for the last 3 years sinus pressure with migarines there and at the eyes, nose and forehead area, they have always been in the back of my head. I also have Nausea, Vomiting, dizzyness, light headed and pain attacks. I've had Ct scan, MRI, Thyroid test, EMT doc, Hormones checked, lots of blood tests. and they have found Empty Sella Syndrome(said it wouldnt case any serious issues), very minor growth hormone being border low, I'm aneamic, and i am insulin resistance tho they found no issues with that either. I feel pretty lost dunno if anyone can help it would mean alot thanks

[horselip]

Oh poor thing-
That just sound awful. Well it sounds like focusing on that cycle issue first makes sense. Maybe if that is dealt with other things will let up. i would imagine that this amount of blood loss might be contributing to anemia which would certainly be part of it. The headaches tho- like you say- may have changed in when the Pituitary thing happened. That would be "all in your head" like you say. Just not in the mental type way :)

I had a cyst in my Pituitary gland rupture. This did some nerve damage and i have had an ongoing headache since. My headache pain is well managed now and thankfully I have more good days than bad. My neuro endo has told me that he has several pituitary patients who are dealing with head pain. So he was very helpful in getting me into pain management.

Maybe once you get the cycle thing dealt with, you can get yourself into pain management for the head pain.

Sending you a hug from Hawaii-
Horselip

[horselip]

I know a little bit about empty sella symdrome and it can throw you for a woozy. It means that your pituitary gland is squashed and that the "sella" (that is the name of the little cavity that it sits in) is often filled with cerebral spinal fluid. Often that gland itself does not function right and needs special tests.

Did you have a child three-four years ago? Or were you in some type of accident?

Your best best would be to see a neuroendocrinologist. That is a special type of endo who would work at a pituitary center at a larger medical center. They know what lab tests to run. Sometimes regular doctors runs the labs and say everything is ok, but they did not do them right. For example, did you have the Growth hormone stimulation test?

RE the new headache it may indeed be a different type and be connected to whatever caused the empty sella.

Horselip

[MimiBarnes]

The most tests have been run by a neurendo she did tons of tests, she said the growth hormone is there and low but she said it was bordline low. 3 years ago i had a miscarriage. they keep saying the Empty sella isnt the cause but i feel it is

[horselip]

Ok now it makes more sense You might read up on Sheehan's syndrome and see it any of symptoms seem to fit you. Simply put though pregancy hormones sometimes causes the pitutary gland to malfunction and implode. Then it doesn;t function right after that. depending on the degree of how it self-destructs many woman lose most or all pituitary function which in turn affects the ovaries, adrenals, thyroid. A good neuro endo is key.  And to be of any help they should be looking  at your lab work and your symptoms. Low but in the reference range values nee a little creativity (if symptoms are there)

So tell me more about how this seems to affect you?
Thanks
Horselip

[MimiBarnes]

Some of the biggiest issues are my monthly cycle lasts for 2-3 months then i have 1-2 weeks off then back on it again, they are trying to focus on the right now. Sheehan's syndrome doesnt seem to fit tho. Most of my symptoms are nausea, vomiting, migraines, sore muscles, depression, dizzy, vertigo, feeling faint or light headed, tired easy and memory issues. I dont see to have any other problems, I feel very wore down and almost feel insane as they cant find anything i am starting to think its all in my head

[horselip]

Oh poor thing-
That just sound awful. Well it sounds like focusing on that cycle issue first makes sense. Maybe if that is dealt with other things will let up. i would imagine that this amount of blood loss might be contributing to anemia which would certainly be part of it. The headaches tho- like you say- may have changed in when the Pituitary thing happened. That would be "all in your head" like you say. Just not in the mental type way :)

I had a cyst in my Pituitary gland rupture. This did some nerve damage and i have had an ongoing headache since. My headache pain is well managed now and thankfully I have more good days than bad. My neuro endo has told me that he has several pituitary patients who are dealing with head pain. So he was very helpful in getting me into pain management.

Maybe once you get the cycle thing dealt with, you can get yourself into pain management for the head pain.

Sending you a hug from Hawaii-
Horselip

[sara12345]

Hi,

You should definately try to get at the root of the problem as discussed above.  Also have you seen an otolaryngologist--ear, nose and throat specialist, in case you have something like a sinus infection?  But if they recommend surgery, get a 2nd opinion.   Both my husband and I had that experience and were treated instead after 2nd opinions.  

You don't talk much about what is being done to control the pain.  If you take pain medication, even Tylenol, it can cause constant rebound headaches.  If this is the case, you should look into prophylactic meds which you take daily to prevent headaches.

I have had a severe migraine 24/7 since my stroke 3 years ago.  No one knows the cause, but think that my stroke caused it which is fairly unusual, but can last the rest of my life. After trying many prophylactic meds which help others, nothing worked or I had bad side effects until I got on Petadolex--an herbal medication which did help some.  Their website is:  www.petadolex.com and their free Patient Info line is:  1-888-301-1084.

Also what helped me even more are nerve block injections every 4 weeks and Botox injections every 9 weeks, plus a neuropathic gel that acts like an anti-inflammation on the skin.  Plus more serious pain killers when nothing else works.  And inspite of all this, I still have to go the ER when nothing else has worked.

So get some relief if the doctors can figure out anything else rather than suffer so much.

So try to find the cause, but there are remedies to help with the pain.

[MimiBarnes]

I've been to a ENT doc he said i was perfect. I actually take nothing for the pain as it causes me to bleed. They are about to try some hormone oral pills to try and stop the bleeding because its getting me close to ovarian cancer they said by the time i hit menopause i will prob have cancer... i want to have a hysterectomy because my chance of cancer is so very high it just makes sense not like i can have kids in this state anyways

[horselip]

Was thinking..
in your last MRI report that mentioned the empty sella, did it say anything about about your cerebellar tonsils being amiss? I am wondering if Chiari has been completely ruled out given that your headaches are at the back of your head. And, also now that sinus stuff has been ruled out.
Horselip

[MimiBarnes]

The headaches are all frontal, they just started me on a high dose of Medroxyprogesterone which will prob make the migraines worse.

[horselip]

oh well-
Hopefully that will calm down the cycling. ugh.
Feel better soon
Horselip