Forum Replies Created
-
AuthorPosts
-
ourfullhouseParticipant
You can have both, they are not exclusive of each other. Addisons or the better name Adrenal Insufficiency is when not enough cortisol is made by the adrenals to sustain life. And as you mention, it can get low enough to cause symptoms, without being to the stage of life or death.
True Addisons is usually either autoimmune (there is a test), from having had TB, having something physically wrong with the adrenal gland (cancer/removal). There do seem to be some that have Addisons/Primary or type 1 Adrenal Insufficiency that there adrenal glands just stop working. This seems to be with complex patients with comorbidities going on. The pituitary is sending out the “signal”, ACTH, to the adrenals, but the adrenals do not respond. Usually ones ACTH levels will be elevated because the pit will continue to send out more and more ACTH trying to get the adrenals to respond and send out cortisol. Signs of high levels of ACTH are hyper pigmentation, dark blotches on the skin, looking tan/golden when you haven’t been in the sun. Common to type 1’s are fluid imbalances, not being able to hold onto fluid you take in (just pee it right out)needing fludricortisone to be taken along with the cortisol replacement, Hydrocortisone (pills or injectable – not the skin cream).
Secondary Addisons is when the pituitary is the problem. The pituitary is not sending out the signal, ACTH, to the adrenal glands, so the adrenal glands have no idea they are supposed to be making cortisol. ACTH testing will show low to no ACTH. Pituitary’s can be damaged in many ways, also autoimmune issues, tumors (very tiny), huge blood loss (such as in Sheehan’s Synyndrome). Usually if the pituitary is the problem there will be other hormone deficiencies (other ones the pituitary makes, which are numerous!).
Typical low cortisol symptoms can include: no appetite, nausea, vomiting, weight loss, no energy, sleeping more than normal (can be a lot more than normal), hair loss, low blood glucose levels, low BP (can get dangerously low), low or high potassium, low sodium (all electrolytes can get very messed up), etc.
Hope this helps!
ourfullhouseParticipantI think you are right about getting a more accurate picture being off Diamox for imaging, but I don’t really know how many days you need to go off of it.
And, be sure not to be dehydrated either, the day of imaging.
I had a CINE flow study done last year, which ended up being a complete waste of time and money because I was severely dehydrated due to an adrenal crisis (didn’t know it was a adrenal crisis at the time). I was diagnosed with Addisons a couple weeks later, but nearly died before it was figured out.
All that to say yes, we want our fluids to be at their normal levels for imaging!
I don’t get the symptoms you are describing when Diamox wears off. Same area, but pain and headache not numbness.
ourfullhouseParticipantkfelty,
As far as the doppler ultrasound goes, the one you are having is arteries and CCSVI is about the veins. Two very different mechanisms going on in the two systems. So I don’t think it will be of any help if you are wondering if it will help you know if you have CCSVI. I had the CCSVI doppler ultrasound and have had two CCSVI venoplasty procedures, so if you have any other questions just ask. My veins are very abnormal (I have EDS too, so is that the reason?) with webs across one and my valves are malformed. That’s besides the stenosis all the veins they look at for CCSVI have. I felt really good after my first treatment, but my veins won’t stay open and there are not any safe stents for the jugulars and azygos veins.I totally understand about the fatigue you have. It’s awful. Some days I just have to take caffeine pills to be able to get out of bed and get anything done. One thing I found out that has helped some is that I have defects in the MTHFR genes, which means I don’t have the ability to convert/absorb B vitamins from food/supplements. I have to take special formulations of B’s that my body can actually use. That makes a difference for me. I used to take B complex every day and I would actually feel worse after taking it. Or I would go get nutrient IV’s, loaded with B vitamins, and though “everyone else” feels great after one of those IV’s, I would feel ill and more fatigued. My dr tested my MTHFR genes and voila there was the problem. I mostly take activated folic acid (there is an Rx form called Deplin – but only the name brand, not the generic, works) and activated B12 injections.
So sorry you are feeling so bad and unable to work
ourfullhouseParticipantBarbara,
Really don’t want to go the way of the collar quite yet. She isn’t very symptomatic, except for headaches, right now. If that were to change, definitely would try it.Today they did an orbital ultrasound to see if there were drusen in her optic nerves. And, of course, there are not. It’s painful to go through all these elimination steps. But with this out of the way, I’m going to call the neuro ophthalmologist office tomorrow and ask for the Rx to be changed to the regular Diamox and to order a metabolic panel. If he won’t do the blood work, I’ll have to make an appt with her pedi and ask to get the labs done that way.
Any thoughts on what dose of regular Diamox would be vs the ER type? I know it should be dosed 3 times a day instead of the twice a day she is on now. She is on such a high dose of the ER (1000mg BID) I can’t imagine needing that much in regular Diamox, based on my own previous use of it (which I think was 125, 125 and 250 – though I had to take bicarb to keep it working). Pretty much for me I could tell it was working if I got at least a slight tingle in my hands or feet each day and if I didn’t I could pretty much figure it was time for more bicarb. And so, I’ve been really wondering about how effective the ER my daughter is taking is because she has only had a slight tingle maybe twice in the two months since she started taking it. I know everyone is different but since we are related and so similar in health issues I would think she would have more tingle from taking it if it was working well.
ourfullhouseParticipantI think what it is meaning is that once you are on diamox and you get the pressure under control (which can take higher doses and take a while to achieve) you might find that you can take less diamox to maintain the lower pressure. For instance if you started at 500 mg three times a day (or whatever) and after some time at that dose your headaches and other high pressure symptoms went away you could try going down a little at a time and find where the symptoms start to come back. Dr. Diana always says to take the least amount of diamox you need to reduce the high pressure because diamox has side effects and so less is better, but you should always take enough to be therapeutic.
I think the part about stopping taking it is that some people can take diamox for a time (6 months, a year, etc.) and whatever was causing the high pressure heals (like in a brain injury or compressed nerves, etc.) and people can wean down and then find they can go off it without the high pressure symptoms returning. This is what you can find in medical literature because diamox is used for a lot of different reasons and lots of different patient groups, not just our flavor of zebra’s that we mostly see on this forum (in other words, I don’t know of anyone who has gone off it for very long without symptoms returning, but maybe we just don’t hear from them after they are doing better?).
All that to say it isn’t meant that when you start out that you would take it only for days you have symptoms. I hope that makes sense.
ourfullhouseParticipantThank you so very much Barbara! These are the things I thought I was seeing also. Which looks a lot like my own MRI’s.
I think I am going to have to start with getting her pedi to order labs to prove to the neuro ophthalmologist if she is too acidic for the diamox to work. Then ask him to change her Rx to the non extended release form. Then recheck her optic nerves after those changes and see if that doesn’t bring the swelling down. After that, go from there, with maybe having to try to find a neuro that works with kids that will actually believe those other things going on in her brain are at least partially to blame for the high pressure.
The neuro ophthalmologist she is seeing only goes by what he can or has read in studies. I wish there was something I could print and give him that would prove to him about the extended release not being as good and that acidity works against diamox working. When I tried to talk to him about how my potassium dropped off, he adamantly denied that this is due to diamox, stating that there was a recently concluded study that followed first time diamox users for 6 months and their potassium never changed. He said a lot of people/doctors have believed that potassium goes down with diamox use and that is why the study was done. So now that this study disproves it, labs don’t need to be done to monitor a patients potassium, etc. I told him my potassium didn’t drop till 9 months after starting taking diamox and I had to take supplements daily because of it. All he would say is “hmm”. A six month study is just not long enough to prove or disprove this. Argh.
ourfullhouseParticipantThe short answer is that Diamox is taken daily, not only as needed. Dr. Diana speaks of taking it 3 times a day, every day. Is that what you wanted to know?
ourfullhouseParticipantBarbara,
No injury. Yes,I think she has low tonsils, just like I do. The MRI doesn’t show much of her cervical vertebra as they were looking higher up mostly. I’ve attached two of the best side views. Let me know what you think. Thanks!ourfullhouseParticipantI see that the book is a PDF. Can I read it on my kindle or only on a computer? Does anyone know? Thanks!
ourfullhouseParticipantThank you for posting this information! My neuro is sending me to biofeedback (I’m in Oregon) and now I have some info to compare whatever this place I am going to here is compared to this program in TX.
ourfullhouseParticipantLow HCG levels usually mean the baby is either not as far as long as first thought or the baby isn’t doing well and a miscarriage might happen. Serum HCG levels have to be taken at least 3 days apart. HCG level should double every 2-3 days. HCG levels only increase until about week 12 and then start going back down again.
I have HEDS and have been pregnant 20 times, with 8 miscarriages (one in the second trimester, the rest in the first trimester). We are blessed with 13 living children (one pregnancy was natural fraternal twins – so got a bonus baby!). It was frustrating that no one would do anything about my chronic miscarrying (one pregnancy they thought for sure I would lose due to heavy bleeding. Went on bed rest for a month and that baby made it) until I had had 8 miscarriages. Then, my new OB looked at my progesterone level and found it to be too low for early pregnancy, so started me taking progesterone for the first trimester. My last two pregnancies ended up making it and I believe that was due to the progesterone. I’m not sure that any of that can be pinned on HEDS or not.
What did happen to me that is HEDS related is that my cervix would dilate very prematurely. After spending months on bed rest in the last trimester a couple times, I realized it would thin and dilate, but my water wouldn’t break and I never went into labor. On the contrary, I never really ever went into labor on my own. Had to be induced. That was especially frustrating after months of bed rest to keep baby “in”. Even my twins had to be induced at 38 weeks cause I was just too huge to keep going (they were 7 lbs each).
Totally agree with high protein during pregnancy!
January 29, 2014 at 8:23 pm in reply to: The Driscoll Theory Validated — new video out! Comments? #4827ourfullhouseParticipantArgh NHS! When I lived there as a teen I desperately needed my tonsils out and waited and waited on “the list” to get mine done. My dad finally conceded I needed it sooner than later and we went to a private doctor and I had the surgery within a few weeks. I have no idea how much that cost my parents. I was 17 at the time and thought that like in the US when you get your tonsils out you get popsicles, flavored jell-o, etc. Not in the UK. Ha. First meal I was given was dry toast and hot tea. OUCH.
January 26, 2014 at 9:40 pm in reply to: The Driscoll Theory Validated — new video out! Comments? #4807ourfullhouseParticipantThanks Barabara for all the info. If you have all the Dx for CCI, Chiari, etc. are you wanting to have a decompression and stabilization,IF you could get National Health to pay for it? Did you go to TCI in NY for your imaging? Would you/are you considering paying for the surgery out of pocket? I can’t imagaine living in the neck brace 24/7 as a viable way to live if there is something out there that can help this?
January 25, 2014 at 11:27 pm in reply to: The Driscoll Theory Validated — new video out! Comments? #4800ourfullhouseParticipantBarbara, thanks for pointing out you posted that video. :cheese: I am fairly certain the hard collar will bring relief and also be somewhat diagnostic in itself. Have to ask you though and I know you are in the UK so medicine works differently (lived there two years as a teen) if you had head and neck injury and Diamox helps, have you had imaging, rephrase, GOOD imaging (upright MRI, Flex/Ext MRI or such?) to see what is going on?
Interesting about the head and neck injury connection. I remember when I was in what turned out to be the temporary IRB for CCSVI treatment, ahem, one of the questions was if I (patient) had had a head injury/fall as a child. And, I had two bad falls onto my head as a small child. Had a whiplash injury at about 21 y.o. also. Plus HEDS. Besides being sick all through my childhood, the one thing that really disrupted my life, starting at about age 11 or 12 was the back of the neck/top of shoulders pain. Unrelenting. Dr’s stuck different labels on it (Scheuermann’s Disease first, which I believe was totally wrong Dx and later tendonitis). Then at 14 the headaches started. CT report said Pseudo Tumor Cerebri, but doctor told my mom that didn’t mean anything, so I went untreated until 2.5 years ago when I started Diamox. My neck subluxes and goes out of place easily, very unstable.
Which brings up one other thing that might have lead up to this extreme flair up, and that is that a few days before this intractable head pain started I had a chiropractic adjustment. Hadn’t had one in a long time and my neck was so tight I wanted to give it a try. And, even my chiro commented that I adjusted (cracked) more than I usually do.. by a lot (my ribs too). Still, the pain didn’t start till 4-5 days after that. So ???
Dr. Diana, my levels are monitored and are all good, potassium included (I take Potassium Citrate every day). I too would like surgery to be of last resort, but from where I am right now, with a house full of children who depend on me, I need help now. :down: If I get imaging that shows structural issues, the kinds that Dr. Henderson sees/treats I guess I’m not understanding how anything but surgery can help? As it is, getting into see Dr. H is 8+ months out right now (just read that on another forum). He’s getting as “popular” as Dr. Francamano.
It is difficult to walk right now (like you mentioned, dizzy when I turn my head, plus my balance is just totally off, left leg is dragging, etc.), brain fog is so thick I can’t think very well and struggle to find words (you can’t tell from this post, like how many mistakes and how long it took to write this, ha), reading words incorrectly, etc. and the totally disabling fatigue on top of the intractable head/neck pain. Oy.
January 25, 2014 at 6:40 pm in reply to: The Driscoll Theory Validated — new video out! Comments? #4787ourfullhouseParticipantAfter trying every medication out there, and drinking gallons of Gatorade, Pedialyte, taking salt tablets, and being told I needed a neck fusion and likely Chiari surgery (then later a brain shunt) — GADS — I’ve come out the other side with no surgeries, and basically “normal bodily functions”. 😉 I was even told to have my gall bladder removed, I needed surgery for a “broken” ileocecal valve (between my large and small intestine), I needed surgery on my rotator cuff(s)… The list goes on. I *think* many folks are like me — we may be able to avoid much of this if we can identify what’s happening in each one of us, and hit the source of the problem. Otherwise, I think we’d just have loose joints, basically, right? Not me! EVERYTHING in my body was shutting down. This is a horrific condition. Let’s see what we can do to make it merely “an annoyance”. In my mind, that’s what it should be. Ditto for Chronic Lyme Disease, “Fibromyalgia, Chronic Fatigue Syndrome. It was suggested (incorrectly) that I had all of these (as did my kids). I have some ideas as to what is going on — beyond The Driscoll Theory. But we need to take care of this in “layers”, as I’ve found, and the layers discussed in The Driscoll Theory are a necessary beginning. Big hug…
Dr Diana, after 2.5 years on Diamox it seems my body has hit a wall, and like you wrote “everything is shutting down”. My PH is fine, I’ve upped the dose, and no help. I’m living in a soft collar, which helps a little, and about to order a hard collar as traction greatly helps reduce this horrendous back of head/neck pain. I have been researching Dr. Henderson’s work and my symptoms all line up with CCI/chiari/occult tethered cord/etc. Trying to figure out how this ties in or doesn’t tie in with the Dricoll theory? If a person has cranial instability (caused by our defective collagen and extreme looseness) that is causing issues, might it be the real root of some of our symptoms? Have you seen “A Unifying Theory” by Dr. Andrew J. Holman? http://www.youtube.com/watch?v=Ei8LbUDkQno
I’m desperate for relief from this back of the head/neck pain, and looking into going to see Dr. Henderson, no small feat as I’m on the opposite coast. If he found CCI/chiari, etc. I would gladly have the surgery if it would end this pain and that it might help with autonomic issues as well. I’ve already lost my gall bladder and now have severe problems with my bile duct (SOD – already been treated once), my stomach isn’t digesting food much at all anymore (everything goes right through undigested into the toilet- with severe diarrhea that even 6-8 Imodium doesn’t slow down, and might be why Diamox isn’t working, cause everything exits before it can be absorbed..???), and I have to have surgery in the next month to have numerous kidney stones removed because they are chewing up my kidneys (probably exasperated by taking Diamox).
I would love to hear your thoughts on Dr. Henderson’s work and how his surgeries have helped EDS patients, etc.
-
AuthorPosts