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soundandvision

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About soundandvision

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  • Birthday 10/01/1982

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    kileyenfrancais
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    Female
  • Location
    Menomonee Falls, WI

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  1. BBs have made me gain weight like crazy. I'm really pretty upset about it because it's overall just making me feel a lot worse but I have to be on a BB for my high bp. It's totally a ****** if you do, ****** if you don't situation.
  2. You're definitely not alone! I have both too and have experienced all the symptoms you've listed. Getting sick after a hot shower, moving positions and getting lightheaded and the pain at the back of the head/neck (right at the cerebellum, yes?) are things that come along with POTS. (At least the headache did for me--I noticed not long before my POTS dx a new dull head pain that would never leave and was different from my normal daily headaches/migraines). In any case, I hope the doctor is able to help you and get you on your way to feeling better soon!
  3. Sorry this is a little late to the game but, I was recently handed the study and was verbally told what the exercise regime would entail by the new EP I'm seeing, Ryan Cooley. Basically the exercise is based on your heart rate, I'm not entirely certain what that means he didn't offer any further explanation. But you start off doing recumbent exercise via swimming, recumbent bike, or rowing and then graduate to walking upright or an elliptical, and then from there work up to core training like Pilates and weights etc. I understand that some kind of exercise is important obviously to keep us from deconditioning and it helps us when blood begins pooling. However to say exercise is going to cure it is a bit much. I was active before this condition, I had an extremely active job. I continue to try to exercise and still move as much as I can and I'm still doing worse. And not once, after all the numerous amounts of heart studies I've undergone did someone tell me my heart was smaller than normal (in fact, my left atrium is enlarged from arrhythmia). As far as I know, Dr. Cooley is pushing this regime out to all his POTS patients, regardless of type. Anyway, tl;dr: I have the study (dated June 15, 2010) and the consent form if anyone is interested. I can certainly scan it in and share. I'm not entirely certain if I can share the consent form in its entirety though. I wasn't told I couldn't but since this has been rather hush-hush, I don't want to run into legal issues. However, I imagine paraphrasing is OK (correct me if I'm wrong)?
  4. bruc - As far as I know Jaradeh is leaving the entire state and I was not able to find out where he went, they were mum on the subject. I'm sure Barboi is a great doctor but I don't see how the clinic "can't" help me. For someone to judge my quality of life and tell me, "Oh I'm sorry, you're just not sick enough" is not only insulting but pretty darn awful particularly when they haven't received the full story. I'm happy he's been able to help so many others I just wish that I was one of them. I can understand their unwillingness to take on new patients if they were dealing with anything but a rare syndrome. There just isn't a lot of help out there for this it's not like you can turn the corner and run into another autonomic clinic. As I mentioned, I understand that they probably have a full case load and are busy doctors. I'm not saying I expect them to drop everything and help asap but I have my reasons to see them and one measly visit months down the road (or at the very least consulting with my GP) would be beneficial. If I'm that "easy a case" as they seem to think I shouldn't be taking up enough of their time to be problematic. Sadly Mayo is not an option. My insurance isn't covered there and I'm in no way financially OK to begin amassing even *more* medical bills. Thank you for the suggestion though!
  5. kcmom - I think I'll definitely get in touch with Dr. Grubb, perhaps he can suggest a closer colleague or work with my GP. It's worth a shot. Their reasoning is they can't help me and seem to think my GP can manage this which again, just isn't possible. How can someone who doesn't know what dysautonomia is manage it (particularly when things are getting worse)? Instead of being bounced around to 10 different docs (because she will refer me to them when she doesn't know) I could just go to one place, to a doctor who knows how POTS affects everything and is at least a resource. Yes I think miscommunication is a part of it. I'm going to see if my GP can speak with them after I give her the laundry list of why I feel a specialist is necessary. Thank you for the advice and commiseration!
  6. Unfortunately I didn't even have that option, both refused to see me (Jaradeh is actually leaving the clinic). They passed me off to Dr. Hiner who also has done the same thing. (Sorry I just realized now I didn't properly explain that earlier.) I'd be more than happy to wait for an appointment with one of them if they'd give me a chance!
  7. I am having the absolute most difficult time finding a doctor and am pretty much at my wit's end. I have been trying for the past year to get in to see someone at the Dysautonomia Clinic at Froedtert Hospital here in Milwaukee. My cardio referred me to Dr. Barboi & Dr. Jaradeh when she couldn't do anything more than offer me Florinef and I managed to get an appointment with a Dr. Hiner in the fall 2010. Dr. Hiner waited three months and called me the day before my appt and told me don't bother coming in, I won't help you. I pushed the issue and said I think you can help, let's give it a try. And he came back with, "Well I'm going to do a full autonomic workup." And I said, "Great!" and asked him to go forward. He, of course, didn't. At the time I was going in and out of the ER every 2 weeks thinking I had MCAD (couldn't eat anything, lost a dramatic amount of weight, reacted to all things), so I never followed up to complain about Dr. Hiner. Fast forward several months later and I don't have MCAD/IA (thank goodness!), but the gastro issues are far worse, and POTS is not getting any better (and all the fun extras are getting worse like the pain, neuropathy, migraines, and attacks). So I spoke with my GP and asked her to send in another referral and after lots of office problems I just found out today that Dr. Barboi is refusing to see me because Dr. Hiner did so before, so he "can't" help either. Dr. Hiner never refused to see me, he said he "wouldn't" which makes a big difference. My GP, as kind as she is, knows nothing of autonomic disorders and doesn't know what to do with me. I need someone to help me and their excuse is that my GP can. Really? Because it's been working just *great* so far! I truly do not understand why this is so hard, that when I find someone who specializes in this they won't even give me the time of day. I understand they're busy but give me something, another name, an appointment five months from now, something! I'm tired of trying to handle this on my own and I guess that's why this isn't working. I didn't build up a case this spring and didn't spend thousands in seeing my GP at every attack and stomach issue so I'm not deemed worthy to treat. Had I constantly complained instead of suffering through it like I do with all my problems, I would be getting help by now (maybe). Anyway, thank you for letting me rant. And if anyone knows of a doctor worth seeing outside of these two, anywhere in WI or in Chicago, please for the love of all that's good, let me know.
  8. I do too, unfortunately. Glad to see I'm not alone though.
  9. Hi Everyone, I recently found some medical studies that suggest reflux can trigger POTS attacks. Naturally I can't find the info for the life of me and wanted to know if any of you incredibly intelligent people have run across similar info or have experienced it themselves? I'm supposed to meet with a new neurologist on Friday, though now that looks pretty grim as he more or less phoned me and told me not to bother coming, and I wanted to be prepared with some data. I was dx with POTS in July and spent the next four months convinced I had a mast cell problem due to what I thought was idiopathic anaphylaxis (had a real problem finding food that was "safe" and lost *a lot* of weight). I only recently, as in last week, have been told that I'm in the clear from MCAD (thank goodness). What I had experienced was reflux, unbeknownst to me, triggering really severe POTS attacks that would shoot my BP to 200/100 every single time. Of course when experiencing it it feels exactly like anaphylaxis. Now that I know that I'm not actually going to die when I'm hit with these attacks I'd like to try to figure out how to control the POTS aspect of this. I've been put on Prilosec 2x a day which has helped quite a bit. I take Florinef daily (.1) and of course keep my hydration and salt intake up. Interestingly, and maybe someone else had similar results, when I had my TTT in July I didn't have the typical "drop" in BP. My heart rate jumped 34 BPM however my BP sort of fluctuated high then low, high then low. During the attacks I mentioned earlier it hasn't gone much over 200/100 however it takes forever to come back down and drop to what I consider quite a low number for myself. And usually I experience uncontrollable shaking along with it which scares the bejesus out of me. I'm assuming, since I go ice cold in my extremities, it has something to do with all my blood collecting in my stomach? Any info on that would also be amazing. I know that not every POTS patients has the typical drop in BP and since mine jumps this high in bad attacks should I be looking into hyperadrenergic POTS? I don't totally have my mind wrapped around the differences between POTS and H-POTS so if I'm totally wrong please tell me so. I know treatment is totally different for the two so I'd like to make sure I'm not making things worse with the Florinef. Otherwise if any of you have info (or commiseration) on reflux and POTS, triggering etc, I would greatly appreciate it. And even better if anyone knows of a doctor worth seeing in WI (I'm in MKE) or the Chicago area, I'd be even more appreciative! It amazes me how difficult it is to find a decent, knowledgeable doctor. And sadly I could not get in to see either Dr. Jaradeh or Dr. Barboi at Froedtert Hospital (the two recs I've come across for my area) because I'm not "sick" enough--they passed me off to a colleague in the office who as I said called me and said don't bother coming in. How sweet. Sorry for the bitterness, I'm just a tad bit frustrated. Thanks in advance for taking the time to read through all of that and for your help! -Kiley
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