HopeSprings

Abby - I'm so glad you're not doubting yourself anymore. Doctors (bad ones) can really get into our heads, but I think we kinda know when something more is going on. If it were me... I would work with the family Doctor who seems open to the possibility of POTS for now, get through the pregnancy, recover from that and then pursue testing at an autonomic center. Since pregnancy itself and post pregnancy hormones can affect symptoms, I would wait until a little while after the birth. Would be nice if you could get testing done closer to home, but if you're considering traveling to the United States, I would contact the facility now because my understanding is the wait for an appointment can be many months. You can always cancel the appointment if you decided not to go, but at least you'd have it if you still need it. I would talk to someone at the facility beforehand to discuss the situation, the fact that you're pregnant, that you're on this medication and find out what their protocol is for testing. For example, would you need to come off the medication and how long beforehand. I would also let the OBGYN know that you suspect you have dysautonomia - that you have symptoms, but won't know for sure until you have autonomic testing after the birth. Even better if you're family Dr. will back you up on this. This way if anything did come up during labor/ delivery the Doctor will have a clue what might be going on. That would be my plan. Please keep us posted on what you decide to do.

Now this drives me crazy. I don't understand the first Doctor prescribing SSRI's without first doing some testing and trying to get a diagnosis. I swear they'll throw an SSRI at anything! I would think being on medication could affect test results. I would want a clear answer about where my body is naturally - unassisted by medication - and then go from there. However, you can't just jump off of an SSRI. You would need to work with a Doctor and have a plan for that. I also wouldn't bother getting testing done with a Doctor who isn't taking you seriously. The last Doctor seems to be insisting it's anxiety, so why does he even want to test? Also, is he suggesting you have this testing done while pregnant? Is that even safe? Is there anyone else you can see?

Elizabeth - can I ask what type of EDS you have? Also, are you saying there is a relationship between EDS and small fiber neuropathy?

Called the eye Dr. this morning and they told me to come in this afternoon. Had a full exam and all looked fine except for my thin tear film - incredibly dry eyes... which in this case I believe does relate to my dysautonomia. I already knew I have that, but he thinks this could cause the smokiness I'm seeing. I'm not sure that fits? Anyway, I do need to address the dry eye because it causes a lot of discomfort. Anyway, the point is not lost - we shouldn't take a chance and ignore weird new symptoms because you never know. Thank goodness you had it checked ou, Ophelia and will be ok with medicine. We also shouldn't neglect basic care. I was long overdue for a full eye exam. I've spent all my Doctor time looking for weird diseases that could be causing my dysautonomia, but have neglected the basics! I feel a mammogram coming on....

Oh. my. God. - I cannot believe you posted this today. I had a few episodes over the summer of seeing smoke that wasn't there. It has become more and more frequent since then, almost daily now. I figured it's just one of many weird symptoms and there's no point in going to the Doctor because they never find anything. I just said to my husband last night maybe I should see an eye Dr. about this. Thanks so much for this post - I will be making that appointment!

I'm sorry this Dr. made was so rude and dismissive. Not worth one of your tears, although I understand and have cried too after similar encounters. I can't believe the statement he made about CFS. I thought more progress than this had been made! I agree with filing a complaint and with it I'd attach a copy of the CDC website's description of CFS which says "Chronic fatigue syndrome, or CFS, is a devastating and complex disorder," as well as a copy of a statement made by an FDA spokesperson who said the FDA considers ME/CFS to be "in the category of serious or life threatening diseases." And I guess he was thinking of Pott's Disease which I understand is a complication of tuberculosis, so you could also throw in an article on our POTS. I'd send it to the hospital administrator. I agree with Bella Mia - we should use these opportunties to educate, plus it allows us to take back some of our power I think. http://www.cdc.gov/cfs/general/index.html http://www.fda.gov/downloads/Drugs/NewsEvents/UCM320310.pdf Comments on pages 13 and 14

I developed tinnitus when I first became sick and it's been with me ever since. It's constant in my left ear and I sometimes get it in my right too. It gets louder when I have a cold. It can be distressing at night - sort of a constant reminder that things are not right with me. I agree though - not the worst symptom compared to the rest! I've had hearing loss since childhood, although mainly in the high frequencies, so it's not a huge problem - except for beeping fire alarms which would be nice to hear! I sometimes have problems hearing people when they speak, so I've relied on watching their lips too. Amazing how we adapt, isn't it? Have you been evaluated by an ENT for the hearing loss? What do they say?

Just wanted to pass along some info. Dysautonomia International put out a message regarding a video put together by a Doctor and patient about dysautonomia/POTS and asked that this info be passed on to other dysautonomia groups. "Dr. Lawrence Kinsella and POTS patient Darren Rosener have submitted this outstanding video to the 2013 Neuro Film Festival. The winning video will be shown during the 2013 American Academy of Neurology Conference in March, the largest gathering of neurologists in the world. If this video is shown to a massive gathering of neurologists, it could do wonders for spreading awareness about autonomic disorders and POTS to the physician community. Please circulate this around to all of your friends and family, and other dysautonomia groups. Darren & Dr. Kinsella needs as many YouTube "Likes" as possible to win the Fan Favorite award." Hope it's ok to post this here. If not, sorry, just take it down or edit.

Me too for years - after many tests, no explanation. Story of our lives it seems.

Welcome. Yes, I feel jealous sometimes too. A lighthearted example... My husband mentioned to our PCP during his physical some various aches and pains that come and go, a back ache here, a shoulder pain there. Our PCP runs some blood and my husband immediately gets a positive ANA. I was kinda jealous and even said to him, do you know how long I've been trying to get a positive ANA? LOL. Then he did it again - they re-tested and he got another one! I was like stop doing that. I'm the one with all the symptoms, been tested for everything under the sun - can't get a positive anything if my life depended on it. That ANA should be mine. As far as we know my husband is fine and not suffering from an autoimmune illness. And here's another one - my husband has been sick the past two days (bad cold) and has had the luxury of lying on the couch for 48 hours while I do everything. Under normal circumstances this should be fine, even expected, but because of my chronic ilness there's this little part of me thinking I feel terrible every day and no one takes care of me, I never get to rest - this isn't fair! I'm sorry your family is not more understanding/concerned. If you're like most of us you probably don't "look sick" so nothing shows on the outside, most people have never even heard of this diagnosis, and it's an ailment that makes you feel like death, but doesn't actually kill you. I think it's hard for people to understand how bad we feel no matter how hard we try to explain it. Now tonsilitis on the other hand -people understand that. It took me a long time to get my family to begin to understand. I'd say years had to go by with me complaining about the same things over and over before it sank in... she really must not feel well. Yeah, like I said. All I can say is keep working on them and I hope they come around soon to support you.

Ok, now I've been thinking about this. I looked more closely at the Beighton Test and my elbows can do the same thing she noted about my legs. So doesn't that get me at least a 4? And I'm pretty sure at least one pinky goes up 90 degrees. I forgot to mention other symptoms like early stretch marks, chillbains, degenerative disc disease, spondylolisthesis, arthritis in my neck and knee, deviated septum, spider veins, tiny broken blood vessels, areas of stretchy skin, the bone crushing pain I feel in my legs at night... I'll bet I can dig up more. These things may be common in the general population, but is it common for one person to have all of these? I mentioned VEDS testing to her and suprisingly she agreed to test for it. I also brought up Mitochondrial Disease and gave her the list that Rachel recently posted - and again shocked she's willing to test. She did say that EDS and Mitochondrial Disease have become "fashionable" - I didn't like that, but she did call me on a Sunday morning to discuss things so I can't dislike her! I think once that testing is done and I go back to follow up, I'm going to ask for a full Beighton Test and be more direct in pointing out some of the "symptoms." I'm not trying to put a square peg into a round hole here, but I want to make sure I'm not missing the diagnosis because if I had EDS, so much would make sense! I don't want be grey - I want to be postive or negative. Thanks Chaos - I'll look up those threads. And I brought up CFS to this Dr. to which she said there does seem to be a connection for people with EDS. Weird about them not looking at the large joints - seems kinda important?? Altruism - that's interesting that they will be re-classifying. Maybe that will help clear up confusion. I hope your test is negative. Monica - I hope putting the pieces together will lead to effective treatment for you.

I'm glad this topic came up because I'm in a state of confusion myself. I hadn't pursued EDS until now because I really never thought of myself as flexible, but I do have some of the other signs and since it is so associated with POTS, thought I might as well check it out. So I recently went to see a geneticist who specializes in Marfan and EDS. I told her about the POTS, pointed out my thin skin, very visible veins, told her about the easy bruising, flat feet, ankles turn in and someone recently told me about this reverse prayer pose being a sign of EDS - which much to my surprise I can do. This is the one area I can say I do feel very "loose" - my shoulders. When the Dr. examined me she mentioned soft skin, something about a scar on my back, and when I stood, she looked at my legs and said "ballerina legs" with no further explanation. I think this refers to one of the items on the Beighton test. She measured a bunch of body parts, had me tuck my thumb under all my fingers, asked me if could touch the floor and something with my hand - I forget now, I think asked if I could touch my thumb to my wrist. I can't do any of those things. End of the appointment, she couldn't tell me whether I have EDS or not! She said I'm not a classic case, but there are signs, but I'm in a grey area. WHAT? So - is it really this hard to diagnose? Do you have to be super hypermobile to have it? Can those of you diagnosed do ALL the stuff on the Beighton test? And anything else you can tell me..... Thanks.

Oh, the electric brain zaps can also happen with discontinuing an SSRI - just throwing it out there just in case.

I'm sorry too. I think the stress and emotion of the situation, plus the hormonal changes, plus the lack of rest could understandably make you feel much worse.

Hmm, pain seems to be the worst symptom for PCS. It doesn't hurt - just lots of pressure. Bananas - your icon is so funny!

I don't think I have EDS, but I do have POTS. I get the head vibration symptom too. It's something that comes and goes. I'll have it on and off for a day or two, then it will go away and come back weeks or months later, stay a few days, leave again. I think it's like you described - like a buzzing vibration lasts a second, stops, then again, stops, etc. and can go on for quite a while. When it happens I swear it's coming from somewhere inside the house or it's something outside - but I quickly realize nope, its coming from inside me! It's very weird and annoying and kind of scary. I also started getting it in my foot this past year, sort of feels like the vibration of a cell phone in my foot. I have no idea what this has to do with POTS.

My first thought was frenzle goggles! I had a test a while back at a dizziness clinic where they used these goggles which magnified my eyes really huge on a screen (very funny looking) and some testing was done at the same time. This test picked up nystagmus that you wouldn't be able to see just looking at me. I think this is it or something similar - it talks about eye tracking. http://www.dizziness-and-balance.com/practice/tracking_test.htm

So our vitals look like those of a person who is in a state of shock that might occur after having an accident, trauma etc.... Except we're up walking around trying to function like this?

Just wanted to add (as people have suggested to me in past) even if the medication initially causes side effects, it could be a matter of adjusting to it. I think that's a personal choice - whether you can or want to tolerate side effects to see if it eventually begins to helps. I'd always check with the Doctor to make sure those side effects are normal or okay though.

I'm not good with temperature extremes either way - too hot or too cold makes symptoms worse.

Confused. If you're symptoms got worse or new ones came when you took the medication and then went away when the medication wore off, I would think you were experiencing side effects. If you felt the same symptoms when not taking the medication then it's something else. What I've done in the past is test out a medication and if I had what I thought were side effects - get some distance from the medication, then try it again say a week later and if the same thing happened, I knew it was the medication. I'd give it another try if I were you and see what happens. I can tell you that even a pediatric dose can cause problems in a medication sensitive person - which many of us are. Not saying this is the case with you, but it is possible. I'm sorry you're going through this. I would think post pregnancy hormones can mess you up for a while. I hope that once things get back to normal in your body you'll start to feel better.

How does one get checked for pelvic congestion syndrome?

Me too - exactly what you both described, except I have visible pooling in my feet ands hands as well.

Joy - I'm re-reading my post trying to figure out if I said something innacurate? I said heartrate increase on standing or tilt test. I think I know the research you're referring to and if they're correct, then maybe Doctors should do both the stand test and the TTT just to be sure they don't miss anyone. There was a thread here about this (wish I could paste, but my computer won't let me for some reason!) Some people said they passed the stand test, but failed the TTT... so I guess it can go either way. The article also said rely more on symptoms for diagnosis and not just numbers - and I think that makes the most sense. You shouldn't feel terrible just from standing up!

I read a lot of this over the weekend. It was a really good summary of all the research, all the different theories etc. on CFS/ME - and in easy to understand language. Not as impressed with all the "alternative" treatments listed, but I guess the author was just trying to cover all bases. Thanks again, Kitt!