What do Cushing's headaches feel like?

[mandyisme]

I am still waiting for all the lab reports to come back to find out if I have Cushing's.  And today I have another one of my headaches.  (OH JOY!!)  I know headache is common in Cushing's but exactly how do Cushing's headaches feel?  If it's not Cushing's then the only other option for my headaches are allergy induced and I am on 4 meds and allergy shots right now.  Soon I will be on the shots only.  My head throbs and is usually on my right side.  Today it feels like it is at the top of my right side of my head.  Sometimes it hurts in my face around my eyes but almost always on my right side.  It is a throbbing pain that softens and hardens and hurts so bad that it makes me sick to my stomach.  About the only thing that sometimes helps is taking meds and lying down but you can't do that everyday so sometimes I just endure.  The docs even checked to see if I had any broken bones there because my headaches are so bad cause that's sort of what it feels like but no broken bones.  I do not have any warnings that the headache is coming on as some people do with Migraines.  It will go from slight to bad though in about 30 mins.  any ideas?

[rumpled]

Pituitary tumors do cause headaches. However, people with migraines and without them are out there too - so doctors say the tumors are not a factor, but if you talk to someone with a pit tumor, pretty much 100% have headaches. They say it is hormonal. I am not so sure.

As for calling the doc over a headache, I am not sure of the relationship you have with your doc and if she is treating you for them. Sadly, they may not take the individual symptom and not one like a headache as a symptom to be an endocrine disorder per se, but instead fob you off to a headache person. No one looks to the source these days and you would need the symptomatic relief anyway of migraine meds from a neuro.

Labwork for cortisol and on pituitary, adrenals etc. will get you to Cushing's - headache, not so much in my experience.

[Queenie22]

I am also having recent onset of migraines as well.  Last night it was very severe one.  I am waiting on my lab work as well and a salivary test to see if I have Cushing's.  I have every symptom pretty much of Cushing's.  I am so tired all the time, no energy, and not myself at all.  I want answers so badly.  Should I call my endo today and let her know I had a migraine last night and how bad it was?  I am just so frustrated and want answers so bad.  i hate waiting.  I am wondering if I have a pituitary tumor causing the headaches.  Is this possible?

[rumpled]

Can you please detail the tests, the levels and the ranges, and the times you took them? Please?

There are other reasons... Few doctors are experts at Cushing's.

[mandyisme]

Well finally got my reports back... the good news is there is no indication I have Cushing's.  All my blood, urine test came back fine except for Vitamin D levels which I am already on but now am having to do the same thing I done 6 months ago to try to bring it back up.  1 for a week , then one a month.  The bad news... I guess I just have a ton of symptoms from being overweight.  There is no other explanation.

[rumpled]

No, the fat is pretty uniform... I have pics of my belly post-op bilateral adrenalectomy, but I don't post them as they are um, gross.

You may have something else going on there - fatty deposit = lipoma.

I take a preventative (topamax) so I don't have to take as many abortives (imitrex). I was at the point once where I was getting them daily, and could not function. For a while, I could get away with 25mg topamax, but then had to increase it and now I am on the full dose of 200mg. Not thrilled but otherwise, I am not functional. The weather kills me - I know when a storm is coming, I am sick to my stomach!

Other things to try - upping your magnesium, B vitamins... what else have you tried?

[LivingInHope]

I personally don't have Cushing's- perhaps Rumpled would know?  I believe she has friends that have it in addition to her own experience with the disease.

[mandyisme]

Yeah I reckon that is what it is.   Honestly I don't want to take more meds.  I feel like a loser because I am on so much medicine and so far I have no real medical diagnosis just a lot of problems.  With cushing's can one side of your stomach get bigger than the other?  Around my belly button on the right side.. it is bigger than the other side but it doesn't hurt and is not discolored or anything.  I showed it to my Gyno last year and she said she couldn't feel anything that maybe it was a fatty deposit.

[LivingInHope]

So you have an abortive, but not a preventative then?

[mandyisme]

I do have Max Alt to take but I am not suppose to take it too often.  Sometimes it helps sometimes it does not.  Usually if I can take the MaxAlt and then Lie down for like an hour it will get rid of it.  I have had these terrible headaches for about 10 years now.  ... still no test results back yet... I called yesterday and they said the doc was still going over them.

[LivingInHope]

Classic migraines give an aura prior to the migraine.  Common migraines typically do not.  It does sound mostly like you are describing a migraine headache attack.  Are you taking any preventative or abortive medications for these attacks?  

[rumpled]

That sounds like a migraine. Have you thought about taking one of the preventative medications?

While headaches are so very common among pit patients, I don't think that anyone ever has "qualified" the type, but I get migraines. I also get visual migraines.