Wednesday, October 8, 2008

Onto a New Theory...

I can't seem to pinpoint a real link between excess sugar/caffeine and my headaches. So my new theory is maybe it's TMJ (Temporomandibular Joint Disorder) causing the headaches. I never knew TMJ could cause so many problems. I had braces that helped to correct a big overbite when I was younger, so I guess I thought my teeth must've been perfect afterward :-) It seems that isn't so. I haven't helped things any by failing to wear my retainer at night either..for the last couple years. I've had many symptoms over the years that I didn't connect together, much like I didn't connect my acromegaly symptoms.

TMJ symptoms/contributing factors: bruxism (grinding teeth), malocclusion (misalignment of teeth), head/neck/shoulder aches, clicking in jaw, inability to open jaw as wide as before, ear problems (feeling of fullness/muffled hearing - my hubby thinks I'm going deaf because I turn the tv volume so loud!), dizziness, feeling of jaw "catching", stress, bad posture, jaw pain (when pressure applied)

I didn't think I could have TMJ since I don't have noticeable jaw pain, even though I have all of the other symptoms! I didn't realize head/neck/shoulder aches could be caused by TMJ. Or that it could be aggravated by stress. I did think it was interesting that when I have slight headaches, and I've pressed on my upper jaw, sometimes the headache seems to lessen.

I was prompted to see my dentist this time by the fact that no matter how careful I chew, my teeth keep biting the skin inside my mouth and my tongue causing painful canker sores. I'd never had one on the tongue before and I can say it is very, very painful! I've also developed sores from my teeth rubbing against my mouth while I sleep! I decided it was time to get my teeth in alignment again and also ask about the TMJ. She referred me to an oral surgeon who confirmed the diagnosis.

The acromegaly has caused my lower jaw to push forward so far that the oral surgeon said I'm a class 3 malocclusion (I believe I've got that right!). He said my case isn't really bad yet, so that's good! I now need to have a night guard (or splint) made by my dentist, then I need to see my orthodonist to see if he can do anything to help with the alignment of my teeth. The oral surgeon suggested I try to manage the TMJ by trying not to clench my jaw, cutting my food into small pieces or trying a softer diet for a while, avoiding stress, etc. I could handle a milkshake/smoothie diet :-D Hopefully I'll have found the answer to my problems!

Friday, September 19, 2008

Headaches & Sugar?

I've been having almost daily headaches since I was diagnosed in 8/06. Two years of headaches and I'm finally getting serious about trying to find a way to stop them. I've just assumed they're part of the disease (I've heard of other acromegalics who have headaches after surgery), but maybe that isn't so.

I've been to a neurologist who wanted to medicate me, which I didn't want. So I let her send me to physical therapy. The heat and massage helped, but didn't solve it. I notice I get headaches when I get stressed (never used to happen before acro). My neck tenses on the left side and then the headache is always on the left side of my head. I've had blood tests to check for vitamin deficiencies, glucose problems, etc. Everything is normal. And I am happy about that :-) I've been to the chiropracter, that seems to have helped. I learned my C1 vertebrae is out of place slightly. I'm looking forward to seeing how the chiropracter may help my headaches. Although insurance doesn't cover it so I can't go very often, not 3x a week at $40 each visit. As a result I'm trying to locate other possibilities.

I'm wondering if I'm creating my own problems. I always had a sweet tooth when I was younger. But with the acromegaly the sugar cravings (mainly for refined sugars it seems) really seem to have grown. I noticed so many things that I buy are sweet things. Maybe it's a combination of things? Too much sugar, and not enough water? Fluctuations in blood sugars causing headaches? I don't think it's a caffeine problem. I have a soda a day or less. So I just started a journal a few weeks ago to try to pinpoint the cause of the headaches. I believe it was Ken who mentioned early on to me that sugar and coffee were very bad for acromegalics. I kind of brushed that off, probably because I love them so much! :-D In the first article below I read, "One of sugar's major drawbacks is that it raises the insulin level, which inhibits the release of growth hormones." So maybe my sugar cravings have been my body's response to the disease, trying to decrease my elevated growth hormone levels. Interesting.

Hopefully I'll have some interesting answers to report in a few more weeks. I'm trying really hard to cut out refined sugars (seems impossible in our fast food/prepackaged society).

Sugar's effect

Sugar: Pleasure or Poison

Sugar Sleuths

Tuesday, May 20, 2008

GH Update

For some odd reason I'd hoped this visit would've gone well. No such luck. Went to UCSF today to see my endocrinologist. My fasting GH was 2.8 ng/mL, suppressed GH after 1 hour was 2.7 ng/mL, after 2 hours was 2.2 ng/mL. Didn't quite make it under 1 ng/mL. My IGF-1 was 464 with a reference range of 126 - 291. My doctor told me again that as far as he's concerned the assay range for the IGF-1 has been changed too much recently to use my IGF-1 level as a predictor of how well I'm doing.

So going strictly by my failed GH testing he's recommending I go up to the 30mg Sandostatin LAR, and check back with him after 3 full months on the med. Visibly I look better, more swelling has gone down with the increase in the last few months to the 20mg. But I really don't want to think of where I go from here when I find out the 30mg doesn't work. I'm sick of fighting with this disease already. I feel more like a 50 year old than a 31 year old. I'm fatigued all the time even though my thyroid and other numbers are good. My headaches have improved but I still have them quite often. I have heart palpitations sometimes but my EKG was fine. Everything seems *fine* but I don't FEEL fine. I'm still waiting to discuss my latest MRI with my doctor. But my last MRI was good and my GH was still too high. I really don't want to consider radiation and possibly damaging my pituitary gland further, but what option do I really have?