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Poohbear

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Everything posted by Poohbear

  1. Most patients who have some form of autonomic disturbance don't "need" (for lack of a better word) a drug to "create stress". Standing up is enough stress for them. I think for most people the mere fact they are having to go through a testing procedure produces enough adrenaline naturally. The literature shows repeatedly that in healthy sujects they had a much higher incidence of syncope or near syncope when given nitro or isoproterenol. Nitro is a vasodialator so it opens and widens all the blood vessels--that's why it's given to heart attack patients to help blood flow and create less work on the heart. Not everyone that gets nitro passes out but on the other hand if they did you couldn't say they have POTS or NCS or any other autonomic disorder. I agree that the "poor man's tilt", as they call it, is probably most useful--people aren't as likey to lock their knees and stand in an awkward way as some of the TTT protocols do. The TTT is useful but honestly, a lot of facilities do the test wrong and many folks don't know how to interpret the results and there is also growing concern that things are now shifting to the opposite end of the spectrum where patients are being misdiagnosed as having autonomic BASED problems. Doctors need to remember there is a list of criteria to be met when diagnosing patients--passing out, having tachy or brady or bp issues are symptoms of MANY conditions not just autonomic disorders. Having symptoms of autonomic dysfunction doesn't necessarily mean the underlying condition or disease is an ANS disorder. I'm glad you have a good Dr working with you!
  2. I have brain fog complaints too. I haven't found any medications that help and I seem to be extremely sensitive to meds and everything else really). The thing I notice that sometimes creates drastic changes is laying down if I have to think or process anything heavy.
  3. I don't know the "official" answer to your question but I can tell you that none of the "top" facilities that research and study these disorders use nitroglycerin or any of the other drugs sometimes used at other places when they test patients. I have always been told the test really isn't reliable if drugs are used as part of the test.
  4. I think it's normal for you to notice an increase in heart rate with the increased activity level you've recently had. You know your body best but in general I think it's best to push ourselves to some degree because it's been shown over and over that deconditioning will only worsen your symptoms. Give yourself time and go slowly. What's that saying....."slow and steady wins the race". Maybe you could time your 'upright' time at about the time your body is peaked with your medication. If you feel like you are about to pass out then of course stop and rest. As others have said the tachycardia, in and of itself, is most likely not harmful (though certainly talk to your Dr to get his opinion for YOUR case) though it certainly is uncomfortable and can add to your fatigue. It takes a while to find a balance between things but keep working at it and listen to your body along the way.
  5. Brianala, You can try to vote again. If it already 'registered' and accepted your answers then it shouldn't allow you the option to vote again. If it says "you've already voted" then it should have gone through already.
  6. Thanks Brianala! I added the option of "doesn't apply to me" for the third question. I don't think you can edit your poll but thanks for bringing it to my attention so I could add it as an option for others.
  7. Hopefully this poll will work! The first two questions allow you to check all that apply to you. The Third question asks you to choose the 1 biggest obstacle. I'd like to hear from as many as possilbe...newer and "older" posters. If you are in contact with folks who don't post here much anymore please ask them to drop by so we can hear from as many as possible. Sometimes when folks do better they drop off the boards and we don't get the benefit of having their answers in these evaluations and it would be helpful to have their input! Thanks everyone!
  8. I'm glad this option is working for you! I am set up to get the temporary placement next month. I have questions and would like to talk to others who gone through some of this. Would you be willing to pm or email me?
  9. Here is one link that may help.... http://www.fda.gov/oc/po/firmrecalls/ethex01_09.html
  10. I got an email from FDA about a week or two ago....I can't find the email anymore but I remember Metoprolol being in the list (and it was a VERY long list). There was one company Ethex or something similar to that name that recalled ALL of their drugs and I believe the email said they were all generics and were recalled at both wholesale and retail levels. Something about not being manufactured under compliance with good manufacturing practices some pills were larger than they should be, some released drugs faster than they should have etc. so all were pulled. You can go to the FDA website and search your drug to see if that's what the issue still is. Since they were all recalled though it makes sense that it will take time to get a new good supply into the marketplace again.
  11. I think you have to be careful not to blame everything on your dysautonomia. I'm not saying there is no connection there MIGHT be, however given that more than 35% of the American population has GERD it is extremely common and in most cases probably not linked to the dysautonomia at all. There might be complications for those with dysautonomia in how it's treated or factors that influence each other but probably no direct link to one causing the other.
  12. Gayle, Check this out.... I realize this is addressing the topical form but hello?????!!!! If it can do this in the topical form I would imagine the injected form would be more potent in this area. You may want to report this as an adverse event to FDA http://www.fda.gov/medwatch/safety/2009/sa...htm#Anesthetics This was just posted 1/16/09. I would share it with all of your Dr's including the ones who did the procedure and the cardio and make them answer to you on this.... Topical Anesthetics Audience: Consumers, radiological healthcare professionals, emergency room healthcare professionals, risk managers [Posted 01/16/2009] FDA issued a public health advisory to remind patients, healthcare professionals, and caregivers about potentially serious hazards of using skin numbing products, also known as topical anesthetics, for relieving pain from mammography and other medical tests and conditions. FDA is concerned about the potential for these products to cause serious, life-threatening adverse effects, such as irregular heartbeat, seizures, breathing difficulties, coma and even death, when applied to a large area of skin or when the area of application is covered. FDA is working with healthcare professional organizations and other media that distribute healthcare information to spread the message about the potential hazards and safe use of topical anesthetics. The Advisory and the Dear Colleague letter provide recommendations to both doctors and patients on safe use of these products.
  13. In my case it seems I do have VCD and yes, speech therapy has been ordered for that. My symptoms overlap with other autonomic symptoms but they are distinguishable. I also have some respiratory stuff going seperate and apart from the ANS and the VCD stuff. As for the laryngeal spasms-- that is a rare form of VCD from what I understand. There is nothing they can really do to stop them. When I pass out the spasm releases and I can breathe again. If I get to where I stay in spasm and it doesn't release on it's own then they have to intubate. They can also release on their own sometimes after a minute or so (give or take a few seconds) In my case I am dealing with numerous conditions at the same time but having the underlying ANS dysfunction makes the others harder to control I think. I'm feeling super frustrated that I am constantly battling various rare conditions (althought the vcd isn't rare....just the laryngeal spasms) and everytime I have a laryngeal spasm it triggers the adrenaline response and then all my POTS symptoms flare and then the respiratory stuff gets flared. All the treatments for the various things conflict with each other so the end result so far is that I lay around unable to be up and around much at all. I FEEL LOUSY and I'M TIRED AND WEARY OF ALL OF IT!!!!! I know everyone here can probably relate to those feelings!
  14. What I'm dealing with is sudden severe spasms of the vocal cords and larynx that completely cut off air supply. There is NO way for me to get air in my lungs when it happens. It is a medical emergency when it occurs. I do have some of the other symptoms you describe at other times--lump in the throat, tightness when singing and those symptoms fall under a milder vocal cord dysfunction but the larnygeal spasm is much worse and very severe. I do understand the ANS controls these involuntary muscle groups. I guess I'm trying to get a sense of if others on this site have these spasms. I've known for years that I have much more than just "POTS" going on but since symptoms overlap I was just wondering if others on this site have also been diagnosed with VCD and/or laryngeal spasm. It seems I'm having all the muscle groups affected----esophageal spasms, diaphram spasms, laryngeal spasm, cricopharyngeal spasm etc etc. mkoven, how do you know your shortness of breath was misdiagnosed as vcd? What tests did you have that distinguished the differences for you?
  15. Anyone on this site have laryngeal spasms and/or vocal cord dysfunction to the point they quit breathing altogether? I'm told this is another thing the ANS controls but haven't ever heard of anyone on this site having the kinds of problems I'm having with it.
  16. I am in the process of having someone scan my paper files into pdf format as well but for now, I have large 3 and 4 inch D-ring binders that I hole punch and stick in the binder. I have a tab for each area of specialty for example: labs, test, EKG's, pacemaker reports, neurology, cardiology, etc. On the labs and test sections I have an Excel spreadsheet that I keep updating with a list of the test and the date done. I keep all records wiithin each tab as most recent showing first.
  17. I'm sorry this happened to you. I know there is a lot of politics within hospitals. Can you or have you filed a complaint with the medical board? If this person was a nurse or an aide they still have to be liscenesed---report them to the board responsible for providing that individuals lic. Still....it may not get the results you want but at least it's officially on file and attached to that individual so that others will see the report if they do a background check (like if he goes to get another job). You could also try contacting a reporter with a local newpaper or tv station to do a story and put pressure on the hospital but in doing this you would have to understand that it would become very public. It's a personal choice and you would need to decide if that is something you could tolerate. Keep fighting and pushing for whatever you need for your own healing!
  18. Just wondering if anyone on this site has been through this program? If so, what was your experience? (Feel free to PM me if you want the info to be private). Here are links if anyone is interested In the link it says, "Some patients with non-pain conditions that have experienced significant decline in function are also admitted to the program, including patients with chronic fatigue syndrome or postural tachycardia syndrome (POTS)." http://www.mayoclinic.org/pain-rehabilitation-center-rst/
  19. For all the folks who have ports, piccs or for any reason use Heparin or Heparin Lock flushes..... Most of you are probably well aware of the recalls that have been taking place. There have been several over the last few months. The more serious (ie. fatal) events have been with the larger/higher doses of Heparin. To make a long story short--I had some adverse reactions to a particular brand of Heparin Lock several months back. My reaction always cleared on it's own within a couple of minutes but acted like an instant (albeit, brief) allergic reaction. It was a really odd thing. I had been using one brand of Heparin and then I moved and the home health agency here provided a different manufacturer's brand. Whenever I used that one brand I had problems but I had no problems with other brands. The infusion company checked everything--making sure there were no preservatives, that the heparin was made from pork intestine (as the other brands I had used had been made of) and not something else. In the end I was told the ingredients appeared to all be the same but everyone agreed my reaction was too significant and scary to keep using it. I was instructed to stay away from that particular manufacturer's stuff and go back to using the other brand that I had no problems with. Now, with all the recalls we know that this was not just my weird body being ONLY sensitive. Yes, it still may be sensitive and picking up a problem in a much smaller dose than the ones that have caused some deaths but clearly there is a problem with the supply I had. I spoke with someone in the FDA office today who was so nice and helpful. Anyhow, they are needing people to report any odd reactions people have had with the Heparin or Heparin lock flushes. Especially since they have confirmed a problem with Baxter supply at both U.S. and Chinese facilities. So, if anyone here has had odd side effects (even if it did not require hospitalization or a trip to the hospital) to heparin or heparin flushes please report it to the FDA. It is easy to report (they have an online adverse event form). My reactions occured from late fall 2006 thru the fall of 2007 on several occasions and it was only when I was given doses from Baxter. Luckily, I still have a vial unopened that came from the same lot so they will be getting that and testing it. If anyone needs help or further info just let me know. Poohbear
  20. For those interested, the segment will re-air on Discovery Health Channel, Mystery Diagnosis Saturday, Feb 2nd at 8pm Eastern time (7pm Central) and again at 11pm Eastern (10pm CST) and again on Sunday, Feb 3rd at 2:00am (1am CST).
  21. Melissa, Just wanted to remind you I'm thinking of you. You have great strength and inner wisdom and I know you will do what is best for you. Wouldn't it be nice if "solutions" were simple and life and death issues did not provoke such fear in people? Anyhow, sometimes people, out of their need to dimish their own fears about life and death project solutions and expectations onto others. I wish you didn't have to experience any of that at all but if/when you do know that it's ok to keep what fits for you and toss the rest. Surround yourself what feels good and right to you because that is all that matters. Love you, Poohbear
  22. Sara, Yep...I've had both of those problems too. I was told the D Dimer can also elevate with any inflammation in your body. I was told that typically if a person has a clot or a heart issue that the D dimer will be WAY elevated and/or climb over a period of several hours. If your level was "mildly" high and did not elevate you probably have nothing to worry about in that dept. but you may want to ask for a repeat in a week or so just to check on it. As for potassium, I have found that the increase in Sodium does lower the potassium and it's a fine balance. What works best for me is eating a meal and taking K+ supplements. (Klor-con is the only thing my stomach will tolerate though). HOpe you feel better soon!
  23. Yippeee! I am happy for you that you got approval to try this and I will pray that you see some good results from it.
  24. Sending lots of love and hugs your way! Poohbear
  25. Rachel, I'm sorry you are having to deal with this too. Sounds like you are already doing the right things. There aren't many meds out there but there are a few. I never had any luck finding a GI in your area who really understood or was willing to take the challenge with the autonomic dysfunction on top of it. I do have a Dr in Nashville (used to be with Vandy but he's gone elsewhere now) who does specialize and is familiar with how all of this fits in the overall bigger picture with folks like us. If you need his name and contact info then email me. Even with him though----there still aren't great treatment options. I have a lot of allergies and issues so I can't handle the typical supermarket liquid supplements but I have used Unjury (www.unjury.com) and I've also had to have special mixes made when I've needed tube feedings.
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