MelissaCrystal

I think a lot of people don't understand that POTS is just a list of symptoms that many, many disorders can cause. There are people who have POTS that can only attribute it to a mystery case of Dysautonomia, (perhaps caused by a virus, pregnancy, or puberty for example). But for most people, POTS/Dysautonomia is -caused- by something else, like a deficiency, mast cell activation, EDS, chiari malformation, the list is VERY long.

I try to encourage people to never give up looking for the cause because it can be something that can be corrected, or maybe something that has a specific set of treatments that work better in controlling the POTS! I'm thinking that most people are confused and just treat their symptoms rather than looking for the bigger picture. So I say definitely go to a doc that knows about EDS and find out if you fit the criteria, and maybe go get tested. Definitely do a lot of research yourself on other causes too if you're curious---the more knowledge you have on the subject, the easier it will be dealing with docs!

Yeah I wouldn't recommend extreme yoga, that's for sure. Gentle, normal stretching is good for your muscles, but don't test your limits anymore if you have EDS.

I'm pretty sure it's related to brain fog, or lack of bloodflow to the brain somehow, because I feel like this if I go out without eating breakfast. So my BP must be pretty low when I experience this... I also REALLY feel like this whenever I try to exercise. Afterwards I'm floaty and I feel kind of high, but not in a good way, it's sort of a dizziness like I'm not all there in my head.

I definitely think it'll be worth it to know, since also 50% of your offspring will have it activated, and all will carry it! Also, I was told I'll need regular cardiology checkups to make sure my heart tissues are healthy, since a lot of EDS types (and even the hypermobility type) can have heart complications like Mitral Valve Prolapse.

My doc says that other joints that aren't on the test are just as important for diagnosing EDS---some people don't pass that test, or barely do, but you have to get evaluated by an expert and they often use hips and shoulders because those are the problem areas for EDS patients. I've dislocated both my hips before, and they're extremely hypermobile in odd ways (can't do the splits but they rotate outward and towards my chest all the way). My doc actually doesn't like that test, says it makes too many people think they don't have EDS---same with the stretchy skin criteria, which not all EDS people have.

My ankles are floppy and weak too. Keep in mind that the knees and stuff don't always have to be hypermobile---when I've walked a lot or gone up stairs, that's when my knees threaten to hyperextend, which is painful. They're pretty unstable when that happens. My doc says that's not normal, and common to EDS. So you don't need to be a gymnast to have EDS, that's for sure!

It does change your treatment plan because some of the mechanisms and causes of blood pooling etc is different than other causes of POTS (because it's a tissue problem rather than just a Dysautonomia problem). There are certain meds that work better for EDS patients on average and it's also more common and understood by more doctors than POTS alone, supposedly. My doc said there is more research on EDS than POTS alone too, so that means there may be more research done in the future on EDS since the starting point is older and there are more resources out there for docs to conduct more studies. I don't know, I think it's worth knowing the cause, because it's also recognized by the government and doctors and hospitals much more than POTS alone. My doc says it's looking so far like 50% of EDS patients have POTS so EDS specialists may be better doctors to go to than the rare cardiologist or neurologist that knows how to treat POTS.

I definitely don't have the binocular vision, though it's interesting! I bet a lot of people here might have that. I have ghosting/double vision in each eye. A ghost of the object I'm looking at appears overlapping to one side, and it's different on both eyes when I have the opposite eye covered. My docs can only attribute it to my pupils---because ghosting is common with dilation.

Wow, how did they rule out MS when that's exactly how they diagnose it?

I am new to this.. so bare with me.

My vision.. clarity and focus ..seems to go in an out..sometimes blurry or double vision where letters are seen BELOW the letters not doubled as in twos..making me very dizzy and spacey. It seems to coincide with autonomic symptoms. My new neuro who is the middle of diagnosing me but does think I have an auto nomic disorder..says he thinks my pupils are constricting..affecting my vision.

Anyone have this?? Along with weakness..dizziness etc?

I am afraid as its been affecting my job.. my typing..and ability to be mentally focused as well.

Thanks...Jan

My pupils are dilated too much naturally, and my docs think that it's the Dysautonomia doing this. They can't find another explanation. It's causing the same exact issues as yours'. Also, when I'm not feeling well sometimes my pupils are EXTREMELY small, and it causes some other issues.

It was like that for a couple weeks in Sac when I was a teenager... I will always remember those days. No going outside for me.

In SF it was over 100 only a couple times I was there----no air conditioning in most apartment buildings, so it was even more difficult than sac.

I hope people in Melbourne have air conditioning =x

Is 51 HR normal for a healthy person? I monitored my brother's HR the other day and it was LOW. Very very odd.

...As for babies, honestly, I'm sad that I have been given advice not to. ...

While it may be the case for your specific situation .... I was told countless things by any number of "specialists" in my day. Sometimes people can only see what is in front of them. I did finally find an OB/GYN who was willing and able to take "high risk" pregnancies. He was knowledgeable and supportive and my advocate every step of the way.

In my specific case, EDS caused my Dysautonomia, and I have a type that causes fragile skin and organs. Highly risky for my uterus... Not impossible, but risky no matter what. With my history I kind of think it'd be a horrible idea.

I think anyone who has POTS should not give up on searching for the cause of their case. I'm so glad I know why I have POTS/Dysautonomia. I think if each person was able to get down to why exactly their body has nervous system regulation problems, then it might be easier to make decisions like having kids. I'm going to look into having a test tube baby so that I don't pass on EDS (highly dominant gene) and maybe have someone carry it for me? I don't know.

Mine couldn't stand my problems the first few years (thought I was lazy + selfish, pulled him down)---broke up many times, but I had other redeeming qualities that kept getting us back together (he loves having an intelligent girlfriend who is pretty! His words). We stuck with it after the third year when I started looking for a diagnosis, and we sort of pledged that we wouldn't let my stuff get in the way of our relationship. That was the turning point, and now we're happy despite my worsened health problems. It's not perfect of course, but we're great teammates and best friends.

I haven't had an issue -meeting- people, but they do have a tendency to want to run like **** when I start to introduce them to my past (growing up with abuse) and my present (health) conditions. If you're a really understanding person with friendship qualities and practiced empathy, I don't think you're going to have an issue finding someone. Just try not to stress them out with your issues right away, is my advice. Unfortunately, we have to deal with our issues alone for a while before having someone volunteer to take care of us, or else no one will want to! But we've been doing that most of our lives though, haven't we? I do believe if you let the person fall in love with you, not your situation, first.... then they will be more than happy to deal with your situation in order to love you =)

Keep in mind also that a lot of men LOVE to take care of their women, makes them feel manlier sometimes. You may not want that type, but... just a little encouragement ;p

As for babies, honestly, I'm sad that I have been given advice not to. My mom offered to carry my baby though, which is endlessly sweet of her. I'd feel kind of horrible making her carry one at fifty though lol

I also realised that when I go with someone else, especially a man, doctors are much more respectful.

Men, really? I've found the opposite for some reason. All the men doctors I've been to treated me like a worry-wort young girl. Constantly talked down to =( I think it definitely depends. We've both had bad luck with both sexes!

Melissa Reid. That is good advice. How do I go about finding a dysautonomia specialist? I think the other dr that I see at the Mayo Clinic (where I was today, and that is the first dr of many that I didn't like) is a specialist, but don't realy know. I know he is a neurologist, but he had different dysautonomia pamphlets in his room. And should I see him for everything. I was referred to the allergist by the GI doctor who originally had me tested for the neuro antibodies. She also thinks I have dysmotility. (I don't know if I am spelling that right or even if it is the right word.) So I am scheduled for a EGD. I really honestly don't know what I am doing, or where I am going. I just keep doing everything the drs say, and am just worn out. I am sorry you were treated bad also.

Thank you everyone.

Suzy

I assumed he was just an ignorant doctor, it's even worse if was actually qualified! I'm so sorry about that. There are some resources on the net for finding the right docs, but for mast cell I'm ignorant on exactly where. If I had time, I'd look for you, but I'm already too nauseous to continue on my comp for the rest of the day, so maybe later I can help you out if I have time. Luckily, someone on these forums recommended my doc to me, so maybe you can make a post about your location and ask if anyone has seen a good doc in your area?

I was relieved after my POTS diagnosis. At least I knew I had something - all my crazy symptoms no one could link and I was running from doctor to doctor was finally explained in one diagnosis!

Well, exciting for you! Let us know about the genetic test (always interested in what those show!) and looking forward to your post on Doc Friday. It's hard to find a great local doctor (I have one in the Chicago area in case anyone needs info)...

I am not that familiar with EDS but hopefully they have a good treatment for that, too.

When I was diagnosed with Dysautonomia/POTS I was relieved for the same reason, but I've been soooo insistent on finding out the cause of the Dys/POTS, I'm glad I didn't give up. EDS causes POTS, so now there is no more searching for me =) Unfortunately I can only treat the POTS/symptoms, not really the EDS. Are you looking for the cause of your POTS or are you just going to treat the symptoms as best as possible? My curiosity eats away at me because there are so many causes of POTS/Dysautonomia.

I'm thinking I have the Classical type because of the wide-spread range of effects on my systems. But I gotta wait until the genetic test to know anything for sure =)

Don't waste your time with non-specialists, and what I mean by that is make sure to find a Dysautonomia specialist or someone who specializes in POTS. It took me a while to find one, but once I did, my frustration was completely over. Every other doctor, even ones who say they know about POTS, have just treated me bad. Please please don't hurt yourself more by going to regular specialists. Do research and find one that is worth your precious time!

My doc said it was common to POTS and it's just blood not being able to fuel your muscles. Without proper bloodflow, we feel really heavy and our muscles don't work well, which is why people with hypotension are really weak. So it would make sense to me why a limb would feel heavy if it was either full of blood or doesn't have enough to operate it, right? Not sure what your doc was getting at, but I think maybe she's looking too far into it... seems like a typical blood volume/flow/pooling problem with POTS patients.

What we have is a recognized disability, so for sure you have the right to make a formal complaint to your boss and have the accommodation of a scent-free environment. Breathing is very important! State and federal laws recognize this =p

Hey guys,

So all of you who thought I had EDS were right. The biggest indicator: my history of hip dislocations. One of you had told me something along the lines of, "the hip is supposed to be the most stable joint in the body, so if you're dislocating it at a young age, it's definitely not normal." Dr. Karen Friday, a Dysautonomia specialist at the Stanford Cardiology Clinic, basically told me the same thing. She also said there are not many other tissue disorders that can cause POTS AND dislocations, so that is why she is 99.9% sure I have EDS. I'm getting a genetic test to see which type, but she's pretty sure it's the type III. It's definitely effecting a lot of my body though, so she wants me to rule out the others.

I don't have stretchy skin, and I don't have any of the EDS typical features, but I can move a lot of my joints abnormally (not all, and not crazy-flexible). I'm not generally flexible, like I've known a lot of my friends to be. I actually have really stiff muscles, so not a lot of range of movement in most places, but my ligaments are very loose and I subsequently have floppy ankles and unstable hips.

So if any of you have suspected EDS but have your doubts about having it, my advice is just go and get it checked out to make sure. Might be worth it for your search =) I had my doubts, but now it makes so much sense because of my bruising, and skin tearing. Stuff I thought was normal turned out not to be.

Thanks for your help guys! Now I can focus on treatment of my symptoms =) I'll be grabbing my first dose of Florinef on monday.

I'm going to make a post sometime for the bay area people who are looking for a doc, because Dr. Friday has been the best thing that ever happened to me. I highly recommend her, and she gave me sooo much info on my treatment options that I feel it'd be a waste not to post it for others who may be curious. A lot of people have messaged me in the past, asking me who my doc was because I was from SF, so I gotta tell them now---it's Dr. Friday and it's imperative that they see her =)

I am so glad I discovered these forums and I am glad it is changing people's lives for the better, including my own!

Yep, my monitors did this to me and caused a lot of dizziness and nausea as well. Had to have the highest refresh rate. Some flat screens don't have refresh rates---so look for those. I think it's plasma, but check to make sure. I have plasma and I am happy with them =)

My veins are small, but they are numerous and bright blue under my transparently pale skin =) When I'm sick or sweaty, they're all over my chest and ribcage. Not very attractive.

http://dinet.ipbhost.com/index.php?showtopic=11459

Was on the front page of the discussion---I believe it's in the treatment section.

Raising the foot of the bed at night can increase blood volume.

There's also some iphone applications that have recent articles and studies that are worth looking into if you have an ipod touch or iphone (can they open on the computer?) I was going to make a thread about them, but I haven't had time. I'm sure there's some kind of website that you can pull up all the articles available on POTS though.

When I'm not feeling good, my pulse pressure drops below 10. I usually just stay in bed, because whenever I move it feels really dangerous. During my TTT my PP was 11. This happens so often with me, and I have told my doctor about it many times but she just shrugs and said I should mention it to the Stanford doctor. I'm not sure why she didn't freak out-- I've been told I should be in the hospital when my PP is that low. I think my doctors are just too overwhelmed by me, they don't care anymore.

When I go to Stanford to see Dr. Karen Friday, I'm going to ask her about it specifically, because it's one of my most alarming symptoms---dropping below 10 pulse pressure. I'm pretty sure if I ever passed out during one of these episodes, no one would be able to find my pulse. It's scary how faint it is-- especially with tachycardia added onto it. It's like my heart is pumping away with no blood making it through. It's easy to go into shock in that state, so if your PP ever gets that low, be extremely careful with your body to prevent going into shock.

In most of the articles I've read, it recommends laying down with your legs slightly elevated---gets more oxygen to the brain, and according to one of the articles, prevents morning troubles.