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

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?

Checkup at UCSF

Today I went to see another endocrinologist at UCSF, Dr. Ku. I don't know if I should name names. Especially when I complain :-D They bounce me around between doctors a lot (fellows), but at least this one seemed nice and actually concerned. I can't say the same for one of the head doctors there, Dr. Tyrrell. He gave me my shots but generally seemed in a hurry to get me off his hands every visit. I can at least thank him for prompting me to plead with my primary physician to do the monthly shot (because they initially refused) - and now I don't have to travel to San Francisco every month.

Dr. Ku made sure to check all my vitals and actually asked questions, etc. I told him about my fatigue and headaches and he gave me the normal "don't know what to tell you about that" answer that I get (and expect now) from all of my endocrinologists. He told me the labs for the glucose suppression test came back with the GH at 2.1 and IGF-1 at 389. Back in 5/07 my IGF-1 was 370 and GH was 1.3. This doctor told me that they've changed the normal range so much on the IGF-1 over the years that it's not always a very accurate way to judge things because the range has been so skewed. This is the first time I've heard that one. He also said that he thinks my GH should be below 1.

If I'm to believe the readings are correct, then my levels have actually raised some since 5/07, even on the monthly 10mg Sandostatin LAR. So the doctor is raising me to the 20mg and I'll get checked again in 5 months. Hopefully I won't have issues. I asked how often I should have the MRI done and he said every 6-12 months. The surgeon who operated on me, Dr. Kunwar, hasn't followed up with me because they're so busy there. So the endo says they'll follow that. Well I should hope so! I can't believe that's not a normal concern for the endo with my condition. It's as if he expected the surgeon to follow up with me, I'd think that's an endo's job? Anyway, I know that "I" will follow up with myself. Dr. Ku also mentioned that just because my GH seems to have risen some, doesn't necessarily mean my tumor has returned. That's good news but I'll still be interested to see the next MRI.

One Year Anniversary!!

I can't believe it. I just realized in 3 days it'll be one year since I had surgery. I guess I should do an update :-) I'm doing really well now (knock on wood). A lot has improved since surgery, and even more so since starting the monthly Sandostatin LAR shot back in April. I feel almost normal again. I have an appointment the 18th with my endo in S.F. to check my levels again.

After surgery my depression seems to have completely gone away, where before it was chronic (YAY!). I'm still fatigued daily, and I notice that I tire easily doing simple things like getting on the computer, socializing, and driving long distances. I get headaches and neckaches often. Tylenol and Advil are my friends. My BP is under control with meds (Micardis at the moment, switching to Diovan end of month). My GH and IGF-1 are controlled. Most of my soft-tissue swelling has gone down now. My nose is back to normal size. I've gone down about 2 ring sizes to a size 7 I believe, and I can fit in my 8 1/2 shoe again!! (Down from size 10). My weight is good at 135, but I still get extremely hungry at times. My hair still seems to curl too much but I've discovered the straightening iron. I have to stretch before any exercise now or I'm extremely sore afterward (I may just be getting old in this case, I did hit the 3-0!). And I notice I still have the beginnings of TMJ. Luckily I'm not in pain but opening my mouth is awkward at times, and I deal with the awful clicking sounds/feelings.

My biggest complaint is probably wishing I knew more how to control my illness, wishing my doctors could provide me with more information. Some days the headaches, neckaches, and fatigue are unbearable (I know my limitations better now, and when I need to rest - I rest!) I get juggled around between endo's in S.F., and I never seem to have the same doctor. All they seem to do is tell me my GH and IGF-1 and not much else. At the same time I realize I could be much worse off and I do realize how lucky I am.

I've received a lot of contact lately from other acromegaly sufferers (a pleasant surprise!). It's great to hear from you and swap stories. I hope things are going well for all.

What Do I Do??

I'm having too many of these moments lately. I find myself in a "situation" and I feel like I can't make a decision for fear of making the wrong one. In this case my doctor is really pushing BP med. My BP has been elevated to about 140/90 for the last year. I refused medication initially because I hate to take prescription meds, and I didn't do my homework. I finally researched and realized having untreated hypertension is much worse than taking medication.

I also didn't realize that many people have had success stories with homeopathic methods. So I let my doctor put me on BP prescription meds. Now that I know about the homeopathic options I'd like to try those. However my doctor really doesn't want me to be off prescription meds, she's really pushing them. I told her I'd follow her advice. But now I'm second guessing things. I guess ultimately it's my decision. Even though I respect her advice as a doctor, she is a "guide" in my health care. I don't see what's so wrong with *trying* the homeopathic course for a few weeks to months with daily checks of my BP. If that didn't work, of course I'd switch back to prescription meds. *sigh*

Sandostatin and GH update

It seems like I'm doing extremely well. I just had my 4th Sandostatin shot. Physically I'm finally starting to look like I did 10 years ago, I'm very excited! I still have some headaches but that may be related to my hypertension. I'm trying to keep my blood pressure controlled with prescription medication, but I've read some home remedies really work. I'm hoping to try a combination of garlic and calcium, or possibly the apple cider vinegar and see if I can get off the prescription meds.

I also talked to my primary care doctor about doing the shot in office. She refused in the beginning, but I just found out her husband and partner in the practice has done the shot before. They're going to start doing them for me starting next month so I don't have to travel to San Francisco!

GH Level

I had another oral GH test. GH level is still about the same at 1.4. Need to have my IGF-1 checked again as well. My endo in SF changed again. This time when this dr gave me my shot he hit a nerve and it was painful. I'm not impressed with him so far. He doesn't seem to take me seriously, and takes 2 weeks to return messages. My first visit he asked if I could be seen by another endo closer to home, basically because he didn't have time for me. As if I would travel 3 hours roundtrip to SF every month if I didn't have to. Unfortunately my primary dr refused to do the shot, and the only other endo I saw closer to home I personally didn't like, and felt that he was unqualified to treat me. I'm tired of dr's who just don't seem to care. I asked my primary dr again if she'd consider doing the monthly shot. She said she'd consider it but I haven't heard from her in 2 weeks either.