January 26, 2012 at 7:26 pm #95
Hello My Friends,
A lot of us are noticing that we are doing SO MUCH BETTER on Diamox and/or mast cell meds. That is wonderful. A lot of us have gained from 10-30 pounds. Maybe not so wonderful.
I think most of us lost some weight due to malabsorption, nausea, etc. But we’re putting our heads together to see how everyone is doing now.
My weight has gone up and down for no apparent reason. Up a little now (yuck).
I’m suspecting our hypothalamus is out of wack (my ACTH and cortisol is in the dumper, but still responds — sort of — to a stimulation test. How about you?
🙂 DianaJanuary 27, 2012 at 9:32 pm #1707ourfullhouseParticipant
I recently found a great site that is answering some questions for me and part of it explains weight gain. It is:
The doctor here has extensive research into perimenopause (AKA 8-10 years of pure misery for some of us, and can start much younger than at least I thought!). There is tons to read up on at this site and you can discover the weight gain connection to too much estrogen. And, there is hope and treatment options explained extensively!January 28, 2012 at 12:40 am #1708
Well, I keep getting called skinny even with the scale not moving. I am smaller than I was at this weight before but don’t know how I’m 30 lbs denser without working out. I could still easily afford to lose 30 lbs so no worries unless the 40 I lost tries to find me again.February 2, 2012 at 12:18 am #1715
Ooh, Ooh, I do believe I’ve figured this out! Hormone fluctuations can certainly play into it, but because some of the people contacting me were already in menopause, or were teenagers or in their early 20’s I knew there had to be more to it!
By George, I do believe I’ve got it. Now, do I slow down Part 2 and get it in there? 😛 Probably. The good thing is that I think we can fix this, and I will be a guinea pig for you all, OK? Fixing this will also correct our dysautonomia if I’m right, so I want to prove it to everyone first! I’ll take one for the team, my friends, and if all goes well, my son will be next! 🙂 OK, getting back to work to wrap up this puppy! Thank you so much, my friends! 🙂 DianaFebruary 2, 2012 at 10:02 am #1716
Can I be 3rd if guinea pig 1 and 2 do well? 🙂February 9, 2012 at 1:46 pm #1734Meg kateParticipant
I call guinea pig 4 if the spots open 😉
I’ve been really skinny my entire life and about 4 months ago I gained about 15-20 pounds within weeks. We first thought it was due to the fact that I had just started Cymbalta and that it was the reason that caused the weight gain. 3 months later off the Cymbalta I still have lost no weight. At least I haven’t gained anymore (yet). I saw a doc a couple weeks ago who insisted he knew more about EDS than I did and that it didn’t cause severe pain and that my connective tissue would heal itself…. ohh boy. After fighting with him for a week I finally was able to get the tests to check my thyroid, acth levels, cortisol levels – am and with stim test, b12 w/ folate, serum potassium and fasting glucose (type two diabetes?) and several others. I’ve had severe issues with the hypothalamus in the past, caused a bout of hyperthyroidism with no labs to prove it, and well I’m not to excited about the results of these tests too. Not really sure where to go if they come back negative for everything like they always do. Some of my docs suggested that it might be Cushings syndrome caused by the steroid I was on for about 4 months this last spring…
It’s not just the weight gain thats become an issue, extreme exhaustion, no adrenaline, acne, sudden loss of interest in food (happened last spring with the hyperthyroidism) and other symptoms that are hard to distinguish from the EDS pain issues.
Help?? I really need to get rid of this weight – its killing my knees and hips.February 9, 2012 at 1:59 pm #1735
Hyperparathyroidism? I dunno… guess we have to wait with baited breath until Part II hits the presses.
Pictures Jack Nicholas and Tom Cruise…
I want the truth!
You can’t handle the truth!
Ok, random reference, but seems to fit how I feel at doctor’s offices a lot of the time. Unfortunately they have no “truth” to give. Only lies and BS.February 9, 2012 at 8:39 pm #1736Meg kateParticipant
Okay, Just got all my labs back. Everything is normal – so insanely frustrating…February 9, 2012 at 9:36 pm #1737
I suspect my weight issues have something to do with my brain being squished to varying degrees. (That is when I am making good food choices of course.) Waiting to see what Dr. D has to offer on this subject.March 6, 2012 at 3:44 pm #1789
I want the truth!
You can’t handle the truth!
Palomino, you crack me up. OK, it looks to me like we are developing “metabolic syndrome” (actually a variation of it — we are not fat, lazy old ladies). Ahem. but if our hypothalamus is not getting the right signals from our pancreas, and we are developing insulin resistance, combined with an increase inflammatory cytokines, the body hangs on to fat. To some degree, it is trying to “protect us” with the fat, but unluckily, fat also kicks out some inflammatory cytokines, so THAT isn’t good!
As your guinea pig, I am exploring vagus nerve decompression (or better), vagus nerve stimulation. Additionally, I started on a drug to decrease a BIG inflammatory cytokine, and it is helping. When it comes to drugs, we need to do this right (i.e. all ducks in a row, ethical, clinical trial likely). I am working with a couple of doctors now on that to see if we need to actually run a clinical trial, or if we can run with it as an “off-label” treatment. I will make a video soon and start collecting volunteers! 🙂 So please let me know if you’d like to be on the list, OK? Meanwhile, my kids are on it and doing well, also. Yea!
Thanks so much, everyone!
🙂 DianaMay 28, 2012 at 7:10 pm #2239PrettytiredParticipant
Dr. Diana, did I miss this video? I am VERY curious about what you’ve found (what meds are working); I will volunteer if you haven’t gotten that far yet. So many of my symptoms bother me, but the 35 lbs weight gain is driving me nuts!May 29, 2012 at 8:35 pm #2243
Dr. Diana, did I miss this video? I am VERY curious about what you’ve found (what meds are working); I will volunteer if you haven’t gotten that far yet. So many of my symptoms bother me, but the 35 lbs weight gain is driving me nuts!
No, you didn’t miss a video on this. It is just another puzzle piece I’ve been trying to put together. Some of the answers will depend upon our medications, etc., and we may need to look at our lab work together. We certainly retain water, and that is something I’m working with another researcher on. I’m making some progress. Prettytired, are you taking Diamox? Do you have EDS? POTS? We’ll figure this out… 🙂May 29, 2012 at 8:49 pm #2244PrettytiredParticipant
I definitely have POTS. I suspect I also have EDS, but am scheduled to discuss with my doctor June 11th. I’m hoping to get Diamox at that appointment. My symptoms have taken a fast nose dive over the last 2 weeks. I just sneezed & for the first time had that AWFUL pain in my head that others have described. So, I think it would do me some good. And I’m definitely a water retainer! My feet & calves swelled up like crazy this past weekend, my weight fluctuates daily from the water.
I’ll keep you posted once I start the Diamox.June 1, 2012 at 3:04 pm #2282SweetFeatherParticipant
Dr. Diana and friends! 🙂
I was reading on Dr. Jack Kruse’s blog (he’s a neurologist who talks a lot about evolutionary biology, leptin resistance, low carb Paleo, and cold thermogenesis and optimal health) He’s a bit controversial… he has a group of detractors, he was kicked off a cruise, and his Facebook was hacked! But he is gaining a large following because he has an incredible analytical mind and explains complex issues in a way that even my brain foggy mind can grasp. Many of his readers report weight loss and major health improvements. I decided to take a closer look after seeing his and his son’s before and after pictures… I’m a visual learner. lol.
Anyway, a poster on his site mentioned “Senobi Breathing” for weight loss. So of course, I had to do a PubMed search…
WoW, Wow, Wow! “REGULATING THE AUTONOMIC NERVOUS SYSTEM” caught my attention!
Dr. Diana… is this working because it is stimulating the Vagus Nerve? By improving blood flow? Both? Is there a danger this could cause mast cell degranulation in some due to the release of catecholamines? What do you think?
SENOBI BREATHING. (You can do this SITTING down too, my Potsie, friends!)
“The “Senobi” breathing exercise was found to be effective for weight loss in obesity possibly by regulating the autonomic nervous system and the hormone secretion.”
“After one minute of SBE, significant up-regulation of sympathetic nerve activity and increased concentrations of catecholamines, estradiol, and growth hormone were observed in OWD (depressed) group.”
“Senobi” stretch ameliorates asthma symptoms by restoring autonomic nervous system balance.”
Dr. Jack Kruse also has some interesting ideas on weight loss. He advocates Cold Thermogenesis. He suggests starting with dunking the face in cold water.
Sound crazy? Dunk your face in cold water and lose weight? Well… what about dunk your face and lower your heart rate? He mentioned the “mammalian diving reflex” so I googled THAT! And WOW! Again!
I didn’t know it but…
“humans experience bradycardia when simulating a dive by holding the breath and immersing the face in cold water.”
“The decrease in heart rate due to immersion in the presence of apnea is 8 beats/min, which, when added to the 10 beats/min reduction
caused by apnea in the presence of immersion, is close to the total reduction of 20 beats/min caused by the simulated dive.”
Yes, this is transitory… but what if we could use this through time to have an effect on our autonomic nervous systems and have a heart rate lowering effect that is more lasting? What if???? Could this help us lose weight and lower our heart rates?
Studies have found holding breathe at 60% lung capacity with shorter dunks had a larger decrease in heart rate than bigger breathes with longer dunks. Fascinating!
Oh… and Dr. Diana, I’m excited to hear what you think of all this it seems like it fits right in with The Driscoll Theory!
“A slowing of the heart rate occurs relatively quickly upon facial contact with cold water. The trigeminal facial nerves (5th cranial nerve) transmit the information to the brain which innervates the vagus nerve (10th cranial nerve) causing bradycardia and peripheral vasoconstriction. The colder the water, the faster the reaction. Temperatures above 21° C (70° F) do not elicit a response.”
I’ve got a mini pulse ox which also has HR and I’m going to test this with both cold dunking and with wet washclothes. Looks like my Mom was right about the cold washcloth on my face when I’m sick all these years!!!!!
I know cold can be a trigger for some for mast cell degranulation… so I am proceeding with caution.
Oh, that reminds me, … Dr. Jack tells posters that if they have cold urticaria they need to optimize their Omega 6 and Omega 3 levels as in they have too high of levels of the 6’s. I wonder if some of them have mast cell activation? So far I haven’t had any cold urticaria and I’ve been trying to optimize my Omega 3’s for a few years but who knows, maybe cold isn’t a big trigger for me since I live in the FarNorth?
OMgosh, I think I’ve just had a big adrenalin dump… I’m so excited about this. Hugs all around!
My best, SweetFeather
🙂July 22, 2013 at 6:30 am #3928Zebra FamilyParticipant
I’m currently looking into this also. Myself and my eldest daughter have been diagnosed with EDS III, my son has too and he also has Chiari Malformation. Which leave my other two daughters that have a one in two chance of having EDS also.
My youngest un diagnosed daughter has gained weight in the last few years, especially around her tummy thou none if us are larger builds, her diet is fairly good and she is active. She also has other symptoms like developing severe allergies with mild anaphylaxis reactions to things she wasn’t allergic to before,
Mild Scoliosis, weak stomach muscles, weak hand muscles whilst writing, she has always had mild eczema and has developed mild asthma, pale skin, visible veins , darkening of skin on knees and elbows and starting to click and clack in joints
Our Paed checked for diabetes but got the all clear though tests did show high cholesterol at age 8, we then saw a dietician who suggests its familial as I have this also.
I’m really starting to agree with the metabolic syndrome and mast cell activation as a big cause to all of these issues, as they are commonly mentioned with EDS. we have an upcoming follow up appointment so I want to ask for more tests. If you have any suggestions on what I should be checking I would love to hear them. I am thinking along the lines of thyroid, cortisol, vitamin deficiencies ?
Thanks in advance
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