MightyMouse

I have hyperpots, and produce a huge amount of chatecholes compared to normal people. I have only had the shaking one time, and it was full body, like shivering. I've never had tremors. That being said, I am not representative of most patients because I know my version is related to a genetic disorder that involves collagen and bone growth and is most related to dwarfism

OOOf. half thought... tired this weekend and brain is all POTSy. I wanted to also say that yoga really helped me calm my nervous system down; even if just the breath and meditation part of it. For me it was a refuge in the middle of what felt so chaotic and out of control--i knew i could control only me (to a small extent anyway).

Cheaters are cheaters regardless... mine cheated on me after 18 years. The shock and disgust were terrible. The emotional upheaval for folks like us really mess us up physically--the body doesn't really make a distinction for us between physical and emotional stressors--either way, the balance was WAY out of whack. I started regularly going to yoga around that time--I'd started before that, but went more often when i was living alone--and don't think I did all those crazy poses...I modified significantly I know it's hard to think about right now, but a world of possibilities has opened. I didn't believe that either--and yet, my life improved in so many ways afterward. Yes, it was VERY hard for the first year or so, particularly when I had to physically move out of my home of 12 years. The stress took a big physical toll for a while, and then things settled down...and i met someone BETTER. Who knew. I'm getting married in November.

unlikely

Take a deep breath and let it go--because you always must remember doctors are just human, with their own strengths and failings. Move on until you find a doctor you trust and work well with. It has taken me years... okay sadly, 2 decades... to find mostly doctors I trust. I still am not so impressed with my GP, but at least she takes my concerns seriously and is willing to do what I ask--but she's not made herself better informed about my problems, so I remain the expert in that area--I do give her credit for recognizing that I know far more about autonomic function than she does...but when I'm in crisis, it's disconcerting to have to be the one thinking about treatment when my brain is functioning at half steam or less. kick to curb and move to the next choice... lather rinse and repeat until you get what you need

Try using a different browser if you can to see if it functions better. The other thing is that it may be working but very slow b/c of our host company. We will probably be porting the site over to another hosting company within the next few months which may speed up search capability

I have a few friends who've used her and were very happy with the care they got. She is in upstate NY now, but was previously a Mayo doctor. She is very knowledgeable about autonomic issues and serves on the DINET medical advisory board. http://www.dinet.org/medicaladvisors.htm

This may be a chicken or egg argument-- I have a confirmed diagnosis of hypovolemia--however, does that cause my POTS/NMH symptoms? or is it that my POTS/NMH causes my body to lose too much fluid and I become dehydrated/hypovolemic. I don't think the medical answers are in yet on this one. There is some research about some patients "salt wasting" (urinating out more salt that most people)--but this isn't a consistent finding in all patients with hypovolemia as far as I know.

I've been to none of them-- so I wont vote. Personally, I got really a really good diagnostic workup at Columbia Presbyterian in NYC. I have great follow up care with an EP cardiologist at the Univ of Penn hospital system in Philadelphia. He's more than happy to also connect with Dr. Grubb, who I saw for a 2nd opinion, confirmation of diagnosis and tweaking of meds for several years. Honestly, I don't think there's any such thing as "the best hospital" for this stuff--in my experience, each has their own strengths and weaknesses. For example, many members have complimented one hospital or another for their diagnostic workups and sorting out more complicated issues--but then complain that follow up care is nonexistent... or the opposite--the site doesn't do much in the way of diagnostic work, but is great with managing longer term care. Just my opinion having been around the medical block a few times. Ooof. I think I just called myself old.

I actually just went through this process with my gastroenterologist. I can only tell you what I did and that it worked for me--doctors are humans too, so each may respond differently. I have strongly suspected mast cell problems for years, but doctors have pretty much ignored all my previous efforts to go down that diagnostic path--I think, mostly, b/c they themselves don't know the condition well enough to identify it easily. I had gone through a series of tests with my gastro, who I've only been seeing for a year now (I had one prior for about 15 years but felt I was going no where) to try to figure out why I was having break through reflux even though I'm on enough a ton of meds. *Theoretically* I shouldn't have any inflamation of any tissues, stomach or otherwise, and yet, I still do. 2 nexium a day, 50 to 100 mg of benadryl, singulair, zyrtec and symbacort. I explained that I was concerned that my tests still showed inflamati on of the valves, the stomach lining, and duodenum. I also told him that my sinus doctor describes my sinus linings the exact same way--persistent inflamation. I brought an article with me, told him that I was aware of a significant subgroup of people with my collagen problems that also have MCAD or MCAS. I told him I wasn't looking for a cure, but was looking for an explanation of why I have so many treatment resistent problems--and I was looking for an explanation that took the big picture into account. I then asked him what he thought of my theory... I showed him the diagnositic information in the article and had highlighted for him in yellow all of the items that were a total match with me, including treatment resistant high cholesterol, multiple environmental allergies, and history of hives to anaphylaxis and hyper reactivity to medications that seems to go in cycles of high response to no problem whatsoever. He sat for a minute and said, "you know, I'm not that familiar with this so I'd like to ask that you give me a few weeks to read this and consider it--but I think your request is completely reasonable." I calmly said thank you and I would give him the time, but on the inside I was doing a little victory dance. Not sure where it will all lead --perhaps no where, but for a little while I felt like I had some control of the direction the ship that is my body is going. Good luck, hope this helps you in some way...or helps someone.

Pheo is pretty rare--yes, we've had members who eventually tested positive for it. In the 10 years I've been here, I can only recall one or two. You can try searching the forum archives for pheo information. One of the doctors I saw at NIH, Dr. Goldberg, I think?, specialized in Pheo. There's information in the "help yourself" pinned topic, and he's also co-author of the book by NDRF that we have linked there--which is free and is all about the different types of dysautonomias and how to rule out various causes.

Please search the forum for answers... they are already there for nearly all of the questions you've asked in this topic and others.

Yes, you can recover from POTS, some people do, such as Michelle Sawicki who was one who started this forum and the POTSPlace website (now DINET). I believe the research says that those who have sudden onset are more likely to recover as it's possible that the problems may be viral and eventually some people get over it. I will not be one of them b/c my issues are genetic.

I've had symptoms since birth--I have a genetic condition that gives me the same type of problems as HEDS, but is more closely related to dwarfism.

Oh my my--another bad allergy day. My eyes are bright red and running like little faucets. Yeah, H1 and H2 are on board 24/7 and singulair too. I'm looking forward to the rain tomorrow for a relatively easier day. OY. I have to pick up Rx's today at Target so I'll see if they carry the nasal chrom--I used it in the past, and can't recall if it helped me back then--perhaps not so much b/c at the time, it was before I was on zyrtec all year long.

My appointment with my gastro went pretty well. He agreed to read the articles I brought with me and said "I think your ideas on this are very reasonable". Apparently he knows another doctor at his hospital that deals with mast cell issues, so he's going to run my case by him and we're supposed to connect via my online health account (we can email securely there) in about 3 weeks with his thoughts. BTW, the past few weeks have been BRUTAL with allergies. I'm back on symbacort and the big mama jama nebulizer, rinsing sinuses 2x a day with hypertonic solution just to keep on top of the infection that's giving me bronchitis and aggravated the asthma that's been under control for years--I went off Advair more than a year ago. Ugh. Tree pollen is supposed to peak this week and then I hope to be in the clear for a while. (would be nice, anyway)

Thanks--I have a long history of anaphylaxis, multiple medication allergies, and I've been on proton pump inhibitors, singulair, and zyrtec for many many years. I also can't survive without benadryl each day.

Thanks guys... appreciate all the ideas...and the link to the Mastocytosis site. I have an appointment today with my GI doc at U of Penn, and I will be advocating for him to put me on gastrochrom in order to treat the inflamation he keeps finding upon testing.

Hi all, I'm trying to figure out what kind of doctor to hunt down to help me with ongoing allergic reactions. Now that spring allergy season is running strong in my area, I'm one big allergic mess, and my stomach and sinuses are continuing issues all year long. Thanks for your suggestions.

Katybug, my thoughts exactly b/c the FDA has online forms to fill out in order to report adverse events. http://www.fda.gov/Safety/MedWatch/HowToReport/default.htm

Not everyone is hypermobile. EDS has many forms--as far as I can tell, EDNF has the best information on the various types, outside of medical journal articles. See http://www.ednf.org/index.php?option=com_content&task=view&id=1347&Itemid=88888968 for the basic stuff, and then you can get information there also on each specific type

Have you ever been checked for a collagen defect? It can cause excessive bruising--and if you were on your feet longer than usual, that could potentially cause you plenty of pain. Just curious--I too have had multiple episodes of costocondritis, and I have a genetic cause of collagen problems

Like Dizz, I pretty much had self selected much of the diet before refining it with going caveman because certain foods made me feel terrible for days. Some of the things I eat that are not-so-paleo are dairy items, although I try to stay with femented/aged items b/c I need to be careful to keep my gut flora in check lest the C. diff. takes over again. I also eat things like saurkraut, kimchi, etc. because they have bacterial cultures good for my guts. And I second Dizz's caution about watching out for hucksters out there making money on things like "paleo bread" and other so-called-paleo treats and snacks that are, as I said before, often laiden with things cavemen were unlikely to eat. for those not sure with what paleo is/is not, it's essentially eating anything a caveman would eat, and keeping activity level on par with caveman practices as well...and is based on the idea that we should eat what we evolved eating in order to be healthier. Some of the things that are considered good to eat on this diet are counter intuitive to what moder medicine tells us to eat. Items good to eat on paleo include full fat things like bacon (even this is limited though to bacon that's been treated without things like sulfites), butter, ghee, coconut milk (which is very high in fats), etc., and all sorts of animal proteins, occasional nuts and fruits, plenty of seeds, and vegetables (but not things like potato, and other similarly starchy and cultivated/farmed items) Also, part of this means acting like a caveman too...so lots of slow movement, occasionally sprints (so you don't become some predator's meal), along with periods of rest, and occasional low food intake periods (when food sources were scarce). Things that are decided not caveman foods are pretty much anything that's been cultivated and/or farmed: grains/grasses, corn, beans, tubers, yada yada, and things that contain non-natural items like preservatives, stabilizers, etc. Also, eating meat, eggs, and dairy that have been fed on what they've evolved to eat (grass fed and in open pastures, not factory farmed), non-farmed and organinc fish free, all items of drugs, and where the land/sea is dealt with in an organic fashion are preferred. I'm fortunate to have a local shop that carries organic cage free eggs and raw milk. Finding meats that fit the above wish list are harder to come by unless you order online. There are a few really good places online, but can be very expensive when compared with traditionally farmed items; this can put the healthier meats/fish out of range for me most of the time. Keeping $$ in mind, I do my best to at least meat some of the wish list. Certified organic is better to me than not organic. As a general rule of thumb, I try not to eat things that have loads of ingredients listed with the exception of spices. It's now suspected that I may have MCAD or MCAS; I'm unable to survive without my zyrtec, singulair and benedryl...every day.

I have been fully paleo for almost 3 years now. It was easy for me to do b/c I was already eating gluten free, so most grains were off limits to me. Personally, I think it helped me stay healthier for longer stretches. If you are interested in the resources I used, I read through the free downloads available through Mark's Daily Apple. I also purchased his book "The Primal Blueprint" to help me with various questions that come up. The hardest thing for me was finding food when I eat out at restaurants, but it's much easier now. My only "wish that I knew" item was to not beat myself up when I stray off the paleo path; Mark Sisson, says to be happy with yourself if you can keep yourself to about 80% on the plan--shoot for 100% but be pleased if you keep to 80%. So, I have a cookie or two or three, until I'm satisfied, and that way to don't drop off the plan altogether. For me, I have to stay pretty low carb to feel good. I find that when I eat too many carbs, I feel sick, almost like I'm on the verge of getting a cold... Best wishes on your journey! What's really funny to me at this point is that despite eating EVERYTHING that "common wisdom" says NOT to eat, like loads of bacon, cream, butter, eggs and meat, meat, and more meat, my cholesterol DROPPED. Oh, also, some sites that claim to be 'paleo' may not be--for example, there are ones that have recipes for paleo breads are probably not for everyone b/c they use so much nut flours. Remembering that if one were a caveman, the likelihood you'd have a pound of almond flour/almond meal to eat or bake bread is unlikely. A caveman would probably only have a handfull of nuts a day at most. All that being said, when I crave bread, the almond meal bread is better for me than the grain based bread since I have celiac and repeated episodes with c-diff.

I've found that sometimes happens with my own monitor when my bp drops so low that the machine "thinks" it's an error.