Hello all,

Finally posting, last I checkd this board, the most recent post was 2016.  Now there's some more recent ones.  I'm going to post what I know.  For context, I just came from a very dark place over the last few months; I had to stop work back in October 2018 because I had a setback where I was getting massive head pains / heavy nausea, etc.  My disability through work was denied in December 2018; had to go back to work.  Had another severe episode in March 2019, acute head pain/trauma, with tightness spreading through my chest and my organs feeling like they were being squeezed or shutting down; I know what kind of blood sucking siege having this condition feels like....

In short, diagnosed June 2017 when I had a stroke.  I'm 55, I had no idea I had acromegaly. Doctor says I may have had it for 20+ years.  They removed a nickel size tumor from my pituitary gland in a 7 hour operation.  I haven't been to the doctor (before June 2017) in probably 25 years.  Explains a lot of what's happened in my life that was unexplainable.  Just now getting over myself, I'm basically sick of myself, and my lack of strength in facing this, and I mean really facing it.  But maybe this mental/spiritual torture phase is over.

Here's what I know:

-I also got notice that my insurance may not cover somatuline anymore.  That's the every 4 week injection treatment they give you (sandostatin).  I've taken it for 4 months now (Nov/Dec/Jan/Feb); every month it's been less effective.  This last one in February 21st has provided no relief, and then I got the notice from CVS a week ago that there's something with my co-insurance that's off and they couldn't ship my most recent rx scheduled for 3/21.  Maybe it's a sign because it's no longer working, at least for me.

General practice doctor is 0 help.  I'm sure they are good people with good intentions; just little knowledge about this condition.  Also have an endocrinologist I've been working with since my surgery; again, good people, I'm sure they have good hearts etc,, but I'm just another patient in their office, which feels like a 'patient-mill'..you know, lets do a 30 minute appt and send them on their way.  They just use a standard playbook for treatment and the playbook says to try Somatuline as a post operative curative option.  My MRI's don't show anything growing back on my pituitary, but my IGF level is still quite elevated (923 on last blood test in Nov 2019, it was 2,000+ prior to my surgery).  So it's come down, but it's still quite high. Have to go in again and get another expensive blood test.

And now insurance is having issues covering these Somatuline injection treatments.  The home nurse who administers it told me she is hearing a ton of folks who were denied on insurance, very recently.  So some event has taken place (administratively speaking) because it's wide-spread.

Now the good part, here's what's worked, most of this is my own research and testing things on myself:

1. CBD oil - for those with headaches/migraines, it does help, and remember it does not have any of the THC elements that give you the 'high' from cannabis.  Prior to this, I was smoking cannabis too, and this does help.  I get CBD from nuleafnaturals.com.  This is not an endorsement of them, but my son found them online.  I get a 240mg bottle, it's expensive (with promo code $30), i put about 10 drops under my tongue, and let it sit for 45 seconds or so.  Started this on 3/14.  While it doesn't take away everything, it's taken away a lot of the nausea and my head pains are better..not gone by any stretch, but I can manage through it.  Now that they've legalized help at the federal level, this market will open up further over the next few years, so prices should level out / come down further.

2.  Redwood - again, this is not an endorsement, just a synopsis of what I'm doing for my situation.  Look it up online.  It's a natural extract (all natural), combo Vit C & garlic, pine park, and something else to improve circulation by promoting NO (Nitric Oxide) flow.  NO is known to aide in circulation.

Haven't seen as much of a change on this one, at least for me.  But I do know that the HGH (human growth hormone) that my pituitary has been telling my liver to produce (via IGF1) expands not only your skeletal structure (feet, hands, nose, jaw, etc.) but it also expands your tissues.  This of course can 'squeeze' your blood vessels and inhibit circulation.  Some have neuropathy like symptons, tingling/burning in feet, cold fingers, etc.  When I was in the hospital, and even today, when I take my blood tests, none of the phlebotomists can get a successful blood draw on 1st attempt.  In ER, they had to try 10 times and use 4 nurses.  They said my skin and vessels are really hard, and they couldn't even get the needle through.  I'm taking the Redwood to help naturally promote a softening of the arteries, make them more malleable, to promote better blood flow.  It's had limited effect, maybe even placebo effect, but I feel good taking it, and it's got some other natural healing stuff in there.

FULL DISCLOSURE: I'm a full-blown advocate of natural solutions, not a doctor.  But the medical doctors have provided 0 options that help.  I do take some beta blockers (carevilog, losartin, amlydopine) to help manage Blood Pressure (BP).  My BP sometimes spikes up to over 200, can sometime stay at 180/125 range for days.  But then sometimes it goes all the way down to 110/70, that's what it was on my last appointment with my family doctor. 

I've come to believe that what the endocrinologists will tell you is that only what they know based on documented treatment; as many of you are painfully aware, there is very little about this condition out there, it's very rare.  The symptoms are 'asymetric' i.e. it can come at you quickly and then subside.  Similar to when you're at work and try to convey that your PC is having a problem, but the IT support folks can't recreate the problem, so they think it's 'user error' or you're hallucinating.  They can't find  the root cause, simply because they cannot re-create the conditions of the problem!  So they chalk it up to you being bat-sh^^^ crazy.  My general practice doctor basically told me on my last appt. 3/7 that the acute head pain episode I went through recently where I felt like my organs/chest were contracting/ being squeezed could have been an 'anxiety' attack.  It was a jarring experience, as many of you can imagine.  Now, I just laugh.

3. Water - there is something about water that helps this condition, I think my version that I have is probably the 4-alarm fire version, when I had my stroke back in July 2017, my BP was 245, the nurses said it was the highest they've EVER seen.  So yeah, my condition has been running amok for decades, and finally blew the lid, ending up with a stroke.  If not for that, they would have never found it.  But there's something about water that changes the composition/interaction of how the brain commands the pituitary to regulate the HGH levels.  I'm looking into taking up swimming as an exercise.  Baths do help.  Showers where the water runs down your head, helps.  

Our nurse said hot/warm baths should be avoided because it can affect BP.  She's a good person.  But with all due respect, NONSENSE.  It does help.  I have a BP monitor, and check my BP every day.  I didn't before because it was just discouraging as hell.  Now I do because I am testing things on myself.

4. This may be the one that save my life post-surgery. Diet.  Yes, it's not for everyone.  It's the hardest change.  Prior to surgery I was at 220 pounds (I was 5'9",now I am almost 6 ft), so certainly not obese or anything.  I am now down to 172 or so.  My son wanted to try plant based diet (not vegan mind you) to be healthier for himself.  I supported him and changed my diet with him.  He has since dropped this, he just couldn't sustain it, but I found a love for vegetables.  I still have chinese takeout here and there, I have a pop or two a week, and even go out to fast food (maybe once a week).  But most of my diet is plant based. Broccoli, kale, celery, lettuces, cabbage, kimche is awesome. Fruits, although I try to stay organic because some fruits (from these corporate farms) have chemicals, glysophate, etc.  Always organic, when possible.  I don't eat steak, burgers, etc. anymore.  I don't miss it.

Things like kimche and sauerkraut are like a pro-biotic, the fermentation has a 'cleansing effect' on the colon and helps flush out the body by contributing good gut bacteria.  Gut health it tied to reducing inflammation.  And inflamation is the number one thing that creates the chronic pains people experience in their bodies, the body perceives the pain, and tries to compensate for it.  So you feel the aches, your BP goes up, and people end up in the hospital where they just treat the symptons with medication, and eventually send you on your way.  I've found that gut health = reduced inflammation = more manageable symptoms (headaches, body aches, tingling in the head/face, blood circulation).

Finally, I'm trying to get out and exercise more, I've tried before, but this thing does get you fatigued easily.  That's why I'm going to try more water related therapy, swimming, etc.  It's good for the spirit too.  In fact, I may move to a sunnier location to help promote an outdoorsy lifestyle, again, it probably does wonders to lift your spirits, and that may be half the battle right there. 

Folks, I hope this helps.  For sure try CBD, I believe this will give many at least some short-term relief, while you concoct a plan for the other symptoms.  There's a biomedical company in MA coming out with some type of 'pill' targeting acromeglics, it's in Phase III testing and it may have FDA approval by end of 2019.  It may work, but just be aware, it's a pharma company.  The vast majority of people who try to find these cures have good hearts and are trying to find real cures for us. BUT THEY ARE STILL PART OF THE SYSTEM, AND PROFIT IS STILL A BIG MOTIVE.

Take care,

Tom