headaches

[kristiann]

Does anyone know of an Addisons related reason that I would be having chronic headaches?  I have had a constant headache for over a month now.  I get migraines and it's different from that. It is in the back of my head and radiates around the sides like a hot rubber band.  I feel like is an occipital nerve issue. My primary doc has given me muscle relaxers. I have seen a chiropractor, accupuncturist, masseuse and tomorrow I have an appointment for a craniosacral massage.  I also have an appt. with a neurologist but it isn't right away.   Any ideas??? T hanks.

[Idaho Dusty]

Kristiann,

Sorry about your headaches.  You seem to be trying every avenue to get relief!

How long have you been diagnosed with Addison's?  What steroid, how much at what times?  Florinef?  Other meds?  Enough salt?  Any other diseases?  Celiac?  Have you tried eliminating gluten and dairy for a few days?

I hope you can figure out something to get rid of your headache soon.

Have you had a head CT with contrast?  Have you ever had this type of headache before?

:) Dusty

[kristiann]

Hi Dusty,
Two years with Addisons.  20 mg HC. 10mg in the morning, 5 at noon, 5 at 6pm.  I take .1 mg of fludracortisone. I also have hypothyroidism and take synthroid .88mcg.  I researched celiacs and I didn't think it sounded like me but...
I have never had a headache like this. It doesn't come and go. It just IS.  My gut tells me that I have a pinched nerve or some kind of nerve issue but it always amazes me how Addison's creeps into other areas.  Thanks for your support. I hope it goes away soon too. I feel crazy again, not good.
Kristen

[Shannon]

Are you having any visual, or eye symptoms, or head pressure?

I have never had migraines.  When I was getting diagnosed with addison's, I had head PRESSURE, and pressure between my eyes.  It did radiate to my occiput, L>>R.  Turns out, my brain was swelling from the low serum sodium...cortisol and florinef have helped.  I still do get it sometimes....adding a little more florinef helps (I think because it increases sodium.)  

Also pregnenolone (or DHEA) have been helpful.  Both pregnenolone and DHEA are considered "neurosteroids", meaning that they are very prevalant in brain tissue.  Being on hydrocortisone and florinef chronically, supresses the adrenals ability to make pregnenolone and DHEA.  So, I am not sure I exactly understand it, but either of those two, does help my occipital headache when I get one.  

Do you know if you are primary or secondary?  Have you ever had a MRI of brain/pituitary?

Could be that it is simply musculoskeletal....in which case, hopefully the PT/chiro help.
Take care,
Shannon

[kristiann]

Hi Shannon, thanks for your good thoughts.

I have primary adrenal insufficiency. I have not had an MRI but see a doc on Monday who will be ordering tests of some kind. He mentioned MRI and CT scan. I never thought to include the pituitary.

They are definately pressure headaches. Like a rubber band (a hot one) is wrapped around my skull and squeezing.  They feel like what I have read occipital headaches feel like.  I have been reading posts about DHEA. Maybe that is worth a try.

My doctor suggested craniosacral massage therapy and I went today.  It was an amazing hour. I feel so much better now.  Almost too good to be true. I'm laying low and hoping to remain pain free.

Thanks so much for your suggestions!

[Shannon]

Hope the headache has stayed away.

If you continue to have pressure headache, have your doctor check your sodium, to make sure it is normal (if low, you could need more florinef or HC, more salt, less water.)

If headaches remain persistant, they might want to do a scan.  There is at least one gal on this site who thought she likely had primary, went to Dr. F, found out it was secondary, and that she had a "benign" spot on her pituitary.  

For anyone with AI, pituitary issues are always a possibility.......especially if you are having very persistant headaches even if they are occipital.

On the other hand.  If craniosacral/PT/chiro effectively make them go away, and you are not suffering daily, then perhaps just musculoskeletal.
Shannon

[kristiann]

Shannon,
Thanks so much for your information.  I read about tumors on the pituitary. T hat sounds as much like what I have as anything else.  tThe craniosacral massage is the only thing I have had that has provided some beneift. How does someone know if they are primary or secondary.
My Dr. appt. is at 12:30pm om Monday. My husband found a connection and I am seeing by a doc who will at least be oble to order the right tests for me. I can't imagine I will leave without an order for a CT or MRI of my head.  I also wrote my end and posed the same question I asked here. Any suggestions on what I shoud as her?  By the way, my sodium according to a recent lab was normal. Thanks so much.
Kristen

[ShannonD]

Kristi

Have they checked the sodium since you have been having headaches?  

The one thing that guarentees that it is primary adrenal problem versus secondary is a high ACTH, and profound hyperpigmentation at the time of diagnosis.  Mild hyperpigmentation and other lab tests may just "point" to primary versus secondary.

have they checked your thyroid lately?
Are your periods still regular, or are you having any hormonal symptoms associated with your headaches?

Are you swelling or secreting a lot of salt in your sweat or on your skin?

regarding whether it is primary vs secondary? Do you know the results of your original testing cortisol, stim test, acth?  Do you know what your TSH was prior to diagosis?  Was thyroid first or adrenal?

Have you ever had a head injury or hemorrhage?

I think it is certainly OK and safe to try some pregnenolone or DHEA to see if it helps with headaches.

Take care,
Shannon

[Idaho Dusty]

Kristen,

How are you feeling?  Is your headache still gone?

:) Dusty

[kristiann]

Hi Dusty,
My headaches althought not gone are so much better since the craniosacral massage. I cannot get over that treatment. I did talke with my endo. I confirmed that I am primary, which I thought, that my sodium is at the appropriate level and that she doesn't believe this is anything related to Addisons. I have a CT today and an MRI next Tuesday.  The doctor I saw this week, who ordered the tests, thinks it may be arthritis of the neck.  My gut tells me that I pinched something when I started running and that the craniosacral therapy is going to do the trick. The tests that are scheduled will tell. Thanks for checking in!
Kristen

[galliar]

Kristiann,

To your question below: How does someone know if they are primary or secondary.

When you have the ACTH Testing there are a couple of indicators to watch:

Resting ACTH level is high, and Resting Cortisol levels are low, coupled with a small rise of Cortisol levels after an ACTH injection:  

This says that high ACTH, which is supposed to kick the adrenals into gear to produce Cortisol, is not having much affect, and possibly the adrenals are weak also.  When you then get stimulated with ACTH, if the levels of Cortisol don't increase much, it pretty well says the adrenals are weak, or primary adrenal insufficiency is present.

Normally with primary adrenal insufficiency, aldosterone levels are also low, so sodium, and calcium specifically go low, potassium normally goes high.

Make sure you get a base ACTH level, and Aldosterone level with the ACTH test.

I just recently was put on florinef (for primary AI) and my energy level has significantly increased.  I noticed right away that the typical muscle weakness (it usually hurts to hold my arms parallel to the ground) had almost vanished.  My head is clearer also, and I don't use the bathroom every 30 minutes!  I think this is due to sodium retention.

Of all things though, now I have a severe cold, sinus pressure, and plugged ears.  I thought I was getting a flu, but my temperature is now 97.2.  Just when I was finally feeling great....  Oh well.  It is a constant challenge.

By the way, do you drink caffeinated drinks?

[ShannonD]

Kristi,
Glad to hear that your head is largely better.  
Let us know if it crops up again.  

Another thing which did help me with head pressure (which for me was associated with addison's) was pregnenolone.  Worked way better than aspirin.  

But for me, if I have enough florinef, based on the amount of salt I waste whether through exercise, drinking water, or drinkin alcohol,.....if I have appropriate amount of florinef, and get enough salt in my diet....I do not have head pressure.  If I do occasionally get it despite that, I take 25 to 50mg of pregnenolone.

If it is musculoskeletal....keep up with the cranial sacral. Sounds nice
Take care,
Shannon