MightyMouse

Sorry that happened to you. Unfortunately, it's tough living through trial and error treatments. I had an allergy Rx that sent me into an 8 hour long run of high tachy and the next day I felt like I'd runaway marathon ... My cardio said, "well, your heart did." Don't let this bad experience stop you from finding something rip that helps you.

Mine happens more when I'm up and about--it was so close the other day that the nurse where I work couldn't actually hear a bp at all on one side, and when she switched to the other it was 90/100. No wonder I felt icky.

Sadly, from a distance, no one here can have an answer for you... however, if she did have a heart attack, they'll be able to tell via blood work and ECG readings. I hope she is feeling well soon!

I had a bilateral breast reduction in 2006; not quite the same surgery, but certainly was major surgery in the same area. It took me about 2x as long to recover as a typical patient. Additionally, they were well aware of my autonomic problems and took special precautions when it was time to get me up and walking.

just a suggestion here, but any time you have something heart related that is not normal *for you*, you should probably consider seeing a doctor about it; especially if it happens more than once.

Sadly freaked, one of my dear friends is a medical professional in the UK and ended up after years of getting nowhere with NHS, coming to the US for treatment. Even a doctor with POTS didn't get a basic standard of care for their illness via NHS. Sad statement about the UK system.

I certainly can't hurt you to see someone who is knowledgeable about the various types of EDS--some don't have stretchy skin as an issue, but rather have problems more with veins and arteries.

I have a genetic collagen defect and DO have very mobile joints--my joint pain did not start until I was in my 40's.

I have severe allergies and have never had a problem with any probiotic. In all likelihood, the symptoms you're having are from something else...that being said, it's more likely that you'd have a reaction to a supposed "inert" ingredient in a supplement, such as the binding agents. Also something you may wish to ask a medical professional about.

Hi KJay... I did the elimination diet about 20 years ago for quite a long time. Biggest offender for me was wheat and other glutens...

my guts are somewhat better than when I started this thread; but still not normal. And my BP has been incredibly high for me, perhaps from pain, or perhaps unrelated. Hard to say. My blood work continues to be normal with the exception of persistently low magnesium.

Some days I feel like I'm just pretending to be Mighty Mouse ...

I did feel very well while on a full paleo diet, but then I got C diff and after that all bets were off

Please please please see a doctor. My friend had what you described and as it turns out, she had an issue that required brain surgery urgently...not saying that's your issue, but unequal pupils are certainly not normal and worth investigating with a neurosurgeon or a neurologist.

I feel for you dude... personally I think going to the ER is a complete gamble b/c you never know if you're going to get someone as your lead doctor who is great or someone who is dismissive, or even worse, thinks you're either faking or a mental case. In all my years of ER visits (I had 3 this month), I've had exactly ONE ER doc who knew about my disorder and was super helpful...it was the very last visit I had two weeks ago and I almost cried with happiness when the doctor said to me "you know, sometimes with autonomic problems you can have serious gut motility problems, and you can also have a much longer recovery from the gi flu that any typical person would get over in a few days could take you weeks." I literally started laughing when he said that! and he gave me a quirky look, so I said, "you're the first ER doc I've ever had who "gets" it!" Big smile. and I said thank you too...

Nina

My mom has it as I mentioned in the other post...rather rare compared even to autonomic probs.... 1 in 100,000

I do occasionally cheat on my gf diet... and Becia, I'm with you, I crave potatoes when I'm not feeling well. Unfortunately, the last time I ate them was 2 weeks ago, threw them up violently for about 15 minutes. Sorry if TMI... So for right now, it's kind of hard to think about potato without shuddering a little.

I think the hardest part for me about the diet is that I'm a scientist at heart, and finding reliable evidence of usefulness of the diet from a medical basis is tough. I mean basically, lots of the recommendations seem to be based upon folk wisdom.

Nina

I have the exact opposite problem... my sisters and I carry genes for a variant of hemochromocytosis which leads to higher than normal serum iron. Thankfully, this hasn't caused any problems for any of us yet

I have never passed out during any testing, and I have POTS and NCS.

My doctor wants me on the GAPS diet before we discuss surgical options... however, my mom will have it done in 2 weeks so I can tell you more then. (hers is for treatment of achalasia).

Nina

Oh, I see Corina and I were replying at nearly the same time--thank you Corina, you literally took the words right out of my fingers.

Hello Gemma, I think that question would be best addressed by a physician or a pharmacist...or an MCAS specialist.

Just for my own education, I did a scholarly search on the subject of Mast Cell Activation and SSRIs and found no articles indicating a problem of use of SSRI's with MCAS patients.

From personal experience, I believe I've had mast cell problems for years, and adding an SSRI didn't cause a problem for me with my allergic problems

From what my doctor has told me, as long as your ecg and echo are normal, ectopic beats and/or pvc's like I get are not something to be concerned about. However, if you've you've not had those tests done, it may be something to consider asking your doctor about. Also, I had blood work in the ER showing my blood salts were off For me it was magnesium, but calcium and potassium also can provoke disturbances.

here's info on magnesium deficiency http://ods.od.nih.gov/factsheets/Magnesium-HealthProfessional/

calcium http://ods.od.nih.gov/factsheets/Calcium-HealthProfessional/

Oh...I probably should have put a link to what the diet is inside my first post-- so here it is http://gapsdiet.com/GAPS_Outline.html

I have no affiliation with the author or the website, nor to I endorse any of the products that may be sold there--just posting so you can look over and see if it's familiar to anything your doctor(s) has had you do.

I get PVC's which are exceedingly uncomfortable--but mine only come that quickly when my magnesium levels are too low--which happened to me 2x in the past few weeks. The first time was so low that the ER infused me with magnesium.

7 prescriptions, 2 over the counter meds, and 2 supplements all per my physicians.

Hi friends, my gp saw me on Fri and for the 2nd time has strongly recommended I change my diet to match the GAPS introduction diet. As someone who's been gluten free for decades and at one point, also Paleo, I have to tell you that GAPS seems even more restrictive than what I'm used to... and she wants me on it for the long haul (i.e. forever).

If you have used this diet with or without success, I'd love to hear your experiences with both symptom management (GI symptoms or motility issues, reflux, pain and spasming) and difficulty of food prep. I don't love to cook so making all my broths from scratch isn't my idea of a fun activity to spend what little energy I have each day to spread around.

Thanks in advance for your input.

Agreed Corina--when I am having liver and gallbladder issues, my bm's color and consistency are all wrong, which I'm living through now with a dysmotility flare up. My gp is still checking me for infection via stool culture since I have a history of C-diff infections 3x, but I have a feeling the test will be normal.