October 14, 2013 at 3:54 pm #597
I’m new at this as I just ended up falling to pieces only 5 months ago (after a virus and heavy medications). Anyway , I’ve been focusing on my inflammation/mast cell- type symptoms because that has been what is causing me the most suffering by far but I’m kind of uneducated about dysautonomia. I have visual snow, adhd, brain fog, raynaud’s, inability to sweat normally, difficulty regulating my body temperature, floaters,tachycardia, gastroparesis, tinnitus (that kind of comes and goes and even changes pitch), sleep apnea, bruxism and a lot of other things. Occasionally I see black when I stand up, and this has been happening for many years. I recently began experiencing this bouncy castle feeling, where when I’m walking I get these waves of feeling like I’m walking on a bouncy castle and feeling like I could randomly just drop to the floor like a ton of bricks. So I guess my question is, could all of this be symptoms of dysautonomia? If not, what symptoms are and what symptoms aren’t?
Also, I have had a series of concussions throughout the years and the most recent ones were caused by bumps to the head that were pretty minor but yet I went on to develop “post concussion syndrome” which lasted forever. I had severe sensitivity to light and sound, my sense of smell got all weird and episodes of extremely severe derealization. Could these symptoms be linked to dysautonomia too? Or could they actually be dysautomomia themselves? I have a difficult time judging where by body is in space, which is why I’m so accident-prone.
Anyway, while all of these symptoms can be incredibly annoying and pretty scary, I can still walk, so I am grateful for that and I know that I’m not as bad off as many people. My most debilitating symptoms by far are that I feel like I’m literally burning to death, internally and externally. When I eat or drink anything it actually feels like acid is tearing my whole entire GI tract to shreds and it feels like someone is dousing my body in gasoline and just literally burning me to death. And I’m reacting “allergically” to everything so I was diagnosed with MCAS.
I can only eat organic quinoa, rice and organic oats and sometimes I can get away with pear juice, rice milk, whey protein and sweet potato baby food.
I take double dose zantac/zyrtec, gastrocrom 4-5xs a day ( I sneak in a 5th time because I feel like I really need it), hydroxyzine, and a neubulizer 6xs a day with gastrocrom in it half of the time and albuterol in it the other half of the time, a ton of quercetin (a supplement that has 70mg of it 6 times a day and another supplement with 260mg of it 5 times a day), luteolin, rutin, hyaluronate sodium, chondroitin sulfate…etc. I tried Ketotifen but my body reacted weirdly to it (in that it made my symptoms worse), but I think that may have been because I didn’t start off slowly and I dove right into taking 4 a day.
Anyway, while all of these are very helpful, they haven’t come anywhere near close enough to truly alleviating my symptoms because my MCAS-like symptoms are just so far off the charts.
I’m so beyond grateful for Dr. Diana and her videos because that is how I began to piece together what the heck was going on with me!! Without her information I have no idea where I would be!! Probably incredibly lost, confused, terrified and suffering the max amount without any helpful treatment at all. I’m sure that many of you on this forum feel the same way! Seriously, thank God for Dr. Diana!!
~KatieOctober 14, 2013 at 9:23 pm #4510
I forgot to mention retching. I’m constantly retching and shaking violently, almost like convulsing. It’s really scary, annoying and inconvenient. I feel like people think I’m acting or looking for attention when it happens because it’s often a very dramatic spectacle but I just can’t control it :(. Also my forearms arms have this weird bright purply pattern on them that seems to be worsening. Is that a vascular thing? Dysautonomia thing? MCAS-esque-associated thing? Or nothing to be worried about?
Also, anyone know what’s up with that other rash thing? Anything to be worried about do you suppose? The doctor didn’t know what is was and didn’t act very concerned (but after the experiences I’ve had with doctors throughout this whole nightmare of a journey so far, that doesn’t provide me with any comfort).
~KatieOctober 14, 2013 at 9:23 pm #4511
weird rash thingOctober 15, 2013 at 2:35 pm #4514
Do you have Ehlers- Danlos Syndrome? Have you had an MRI of your brain? Have you heard of Chiari One malformation? Those symptoms mimmick Chiari and vise versa. There is a subset of EDS patients who have a chiari malformation which is harder to diagnose without upright MRI.October 15, 2013 at 2:36 pm #4515
The diamox might really help you.October 15, 2013 at 6:55 pm #4516
Thank you! Yes, I have been diagnosed with EDS type 3. I have had MRIs in the past but they were lying flat and no one has ever looked for Chiari. I was referred to the Chiari Institute by my geneticist but I’ve been so sick that I haven’t been able to follow through that. Also, I have never been into the idea of surgery, so I’m not even sure if I’m going to go to the Chiari Institute. Yes!! I definitely want to try Diamox!! I just want to be sure that I do it correctly. The dysautonomia and/or Chiari symptoms are kind-of secondary to the symptoms of burning to death and reacting “allergically” to everything but it would certainly be nice to get improvements wherever I can!
What are the differences between Chiari symptoms and dysautonomia symptoms? Since they mimmic each-other are there any differences or are they pretty much the same?October 15, 2013 at 8:47 pm #4517
http://onelegoutofbed.blogspot.com/2010/09/most-common-dysautonomia-symptoms.html this is a link to symptoms of dysautonomia. http://asap.org/index.php/disorders/chiari-malformation/ here is one on Chiari symptoms. Here is one on MCAS http://www.medpagetoday.com/resource-center/anaphylaxis/mast-cells/a/37978. They all have overlapping symptoms. Good luck!October 15, 2013 at 9:36 pm #4518BarbaraParticipant
There’s also a symptoms chart, showing a good comparison of:
Compressed Cervical Spinal Cord, and
Fibromyalgia/Chronic Fatigue Syndrome
It mentions ‘Dysesthesiae’, the burning pain, lower down the list. I think you will see that many of the symptoms listed there are similar to those suffered by EDS people, even though EDS (and Dysautonomia) aren’t the specific conditions mentioned.
The lacy vascular pattern on your arm looks like it a light dose of ‘livedo reticularis’ to me, tell me, does it go away if you warm up the arm ? Have you been checked for Antiphospholipid problems, it might be worth asking your doctor to check ?
(UK)October 17, 2013 at 11:57 am #4520
Thank you so much for the info!! Wow, I most definitely have dysautonomia!! It seems that Chiari symotoms are there as well but are little less pronounced than the dysautonomia symptoms. And I just googled livedo reticularis and that definitely seems to look exactly like what is going on with me arms. I’m not sure if I have ever been tested for an Antiphospholipid problem because my doctors seem to just run a boatload of blood tests on me and they never tell me what they were testing for!! Like Dr. Diana recommends, I have to start asking for the raw data so that at very least I can find out what the heck I have even been tested for.
I do have a positive ANA and a speckled pattern immune system though….
Thank you again for the great resources! 🙂October 17, 2013 at 9:43 pm #4524Dr. DianaKeymaster
What a smart group we have here! Everyone is right! That is a GREAT picture of livido reticularis, which can be due to numerous forms of vasculitis, blood-thickening disorders — like anti-phopholipid syndrome, or it can even be due to some medications. But trust me, it’s not normal, and I knew my kids were doing better when their livido went away (finally!). The second rash — did that itch? I also *really* believe that you (and many more of us) are suffering from much more than mast cell problems. I’m trying to hone in on the culprits now. You’ve probably heard me say that I felt like I was being eaten alive from the inside out (eww…) but I also began to develop that HORRIBLE burning — just as you described. A part of me thought, “heck”, and the other (geeky-scientist) thought, “Great! Now I can figure out what is wrong with these folks!” 😉 I am running lots of tests on myself and my poor lab rats (my kids. ha). I am determined to figure this out, and have some blood work out looking for some pretty unusual stuff, but I think I can figure this out. Hang in, my friend. Like many of us, I just don’t think that mast cells are actually our “true” enemy. I think they just sort of become attracted to the inflammation, and they become a sort of red herring. By all means keep up the treatment (it helps), but it is not an end-all-be-all… Big hug…October 18, 2013 at 12:38 am #4528
Yes, I do remember you saying that and I feel like I’m being eaten alive too!! It’s a very strange feeling because while the antihistamines do a decent job of suppressing some of the burning feeling, I still always have the “being eaten alive” feeling no matter what I take or do! I always just thought it was from the other chemical mediators from the mast cells that the antihistamines weren’t hitting (because I was so deep into mast cell land- thinking, that I didn’t know what else to think). It’s constant, very weird, annoying and kind-of maddening. I appear to be getting increasingly mentally impaired, in that I keep repeating myself to people because I can’t keep track of or remember a lot of the things I say and do and I’m a total space cadet, since all of this happened, so it doesn’t help matters when I tell people that I feel like I’m burning to death and being eaten alive!! Lol!! It’s very easy for people to just jump to the conclusion that you’re completely out of your mind with all of these crazy symptoms going on.
I know I keep saying MCAS but I don’t really know what else to call it so I just keep saying MCAS, lol. Maybe I’ll just call it BEAD (Being Eaten Alive Disorder). It’s like we have a zombie virus!!
You know things are pretty bad when being a lab rat sounds wonderful!! I would give anything in the world to be a lab rat (I’m my own lab rat but I’m failing miserably at it)! That is amazing that your son and daughter’s livedo reticularis cleared up! And incredibly encouraging. You must be doing something right, that’s for sure! 🙂
The other rash stuck around for about a week and then went away. It was only very slightly itchy (but that could have been because my skin is always itchy anyway….it was hard to tell) , which is good because I got nervous that it would turn out to be shingles.
Please keep up the amazing work because when you save us all from the connective tissue – eating zombie disorder there has to be a movie about it!! I have some contacts in the media field. It can totally happen. 🙂
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