Poohbear

Or when you understand the MISUSE of medical terms/procedures shown on tv

Just wanted to say that I DO understand some of your hurdles and didn't mean to minimize how difficult finding an outlet for your feelings can be. I mentioned the journaling, collage etc. Those are things I still do at times but it's drastically different than I used to be able to do. I literally paste one or two pictures at a time on a collage. I can sometimes sit for 20 minutes and make a bracelet but it makes me exhausted. I pretty much can't get up and do anything without getting syncopal or at least needing to sleep a while. Similar to you....most of the things I used to do for distraction, stress relief etc I can no longer do and you are right--you can only be so creative before you hit a wall. I'm thankful for my laptop though!! My fellow dysautonomic sufferers are my lifeline ya know?! Hang in there and vent away here all you need to!

THinking of you and hoping you are feeling better today. I wish I had something really helpful to offer. All I know to tell you is that these times are hard and chronic illness in general brings a very unique and different perspective on grief and loss than what most in our society are trained to deal with. I find that sometimes you need permission to feel your feelings and express them the best way you can so they don't stay bottled up. Sometimes working on a collage, poem, journaling, painting....activities like that help me express my feelings and then I can "move forward again" and at other times I just try to distract myself. I hope you are able to find something that is of some comfort to YOU during this time

I have no words of great wisdom for you but I can relate to what you said. I have spent most of my holidays alone year after year and it is very hard. I've tried to come up with "traditions" that are doable but it's not the same and the grief is real and it is awful sometimes. I spent my Thanksgiving in the ER (after spending 7 days in the hospital with only being home for 2) with Dr's who know nothing about this illness and who are refusing to pull an infected picc line and my main Dr is out of the country so.....Yes, I do have a bad attitude right now. I know I have things to be thankful for but at the moment it's hard to feel happy and content when everyone else is eating a plate of good food, going shopping, hanging out.....all things that you and I can't do anymore and it stinks! I wish you lived closer to me 'cause at least we could cry on each others shoulders and then watch a movie in between our nap times, medication schedules and liquid nutrition. Honor your feelings and allow yourself to grieve your losses. I wish I knew what more to say but I do care about you and I do hope things will improve for you! Meagan

My Sleep specialist said SIDS is definately ANS related and he said most of us with ANS dysfunction will not have normal sleep studies. For myself, I do not get the deep stages of sleep. The Dr's explanation is that the ANS has to take over when you are in the deeper stages of sleep....my body/ANS system can't handle that. My study showed that my brain was waking me up very quickly after entering a deeper stage of sleep. The Dr said as long as the ANS doesn't work right it will try to wake you up so that you continue to breath. He said in infants, the difference is more pronounces and their ANS system is wired bad and the ANS system CAN'T wake the baby up.

Sorry you are having such a difficult time with pain. I've not yet had a port implanted so I'm limited in information. I did want to tell you though that when I had my pacemaker implanted I had pain similar to what you are describing. The pacemaker is implanted much deeper though. Pain is such an individual thing; I've had a lot of nerve pain with my picc line. Is it possible that your port is laying on or around a nerve? I know it took me a good 7-10 days when I had my pacer implanted to not have a lot of pain, to be able to sleep on that side etc. As long as you don't have extreme swelling (you may have some if the procedure was just done), fever or any other signs of infection. Remember, to some degree your body will try to fight this port---it's a foreign object in your body and it DOES take time for your body to adjust and heal. Be gentle with yourself and if you can, please do take a few days off to rest. You will probably also find that the more active you are with that side/arm right now the more irritated it may feel.

Thanks Ernie, Corina & Sunfish!!! I SO appreciate the encouragement and advice. I have tried every dressing out there and even the mostly cloth light adhesive broke me out. I'm now starting to react to just the cloth dressing. WHAT???? I do NOT understand why unless it is just that my skin is so irritated it doesn't want ANYTHING on it. Go figure! I'm tired of being so unique---I would like to be normal for a few days! Yes, there is an arm port-- one is made by P.A.S. port and I know Bard also makes several that can be placed in the arm. I am leaning more to having the chest port though because #1 I think since I've had so much nerve pain with the Picc in the arm I would have the same problem with the arm port. #2 With the chest port you have both hands free to place the needle if home health nurse isn't around. I have been told that most likely we will avoid Hickman, Broviac or Groshong lines as those are more prone to infection than the ports. You are right...each Dr has their preference. They seem to feel that having a totally "closed in" system is the least risk for infection. Both the Dr and the home health agency said they have never seen an infection with the port but they do see infections regularly with hickman, broviac, groshong and piccs. However, the former cardio I had said "no" to the port because it was closer to the heart. I really don't understand the difference because the picc line sits at the top of the right atrium. Don't ALL these lines go directly to the heart?? If so, if you were to get an infection, it is going to get to the heart no matter what. If that's true then it seems the port would be less risk in my case. Ahhhhh.. Just one more thing to figure out and research huh? I just hate that any of us have to deal with these things. Sunfish, I'm sorry you are still struggling so much too!!

Yes, I've had this or something very similar to it anyway. Have you been checked for Atrial Fib just to be safe?

Ernie, I am so saddened to read all of this! I feel for you and wish I had some good words of advice. I've had to deal with finding the energy to resolve all kinds of issues from poor ER care to horrible home health agency etc etc. It seems we have to fight for EVERYTHING and it does make one weary doesn't it? I don't know about you, but I know I get just bone tired weary to the core with some of these issues. It is tough because if your labs are "normal" even if you didn't have to sign to agree to leave the ER you still would have trouble suing because your labs are "normal". However, if you give them "credible" documentation of your illness, research articles, your PCP's note and make them keep it on file at the ER then their liability would probably change. My first thought was a patient rep or hospital ombudsmen office so it sounds like you are on the right track there. They usually are the people who can get things done if anyone can. I don't know what to tell you about transportation. I have some of those same issues and they remain unresolved for me although, my situation is not as severe as yours. I know what you mean about giving your body time to rest. I hope the rest will help you and that in the meantime you can get some solutions to these issues. HUGS!

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Hi to all! I've not been posting much since my health has steadily declined and on top of that I had to move. Anyhow, I've had a PICC line for a little over 12 weeks now. The Dr had originally said he would leave it in at least a year (the power piccs are now designed for that and actually a lifetime if needed). The line itself has done well and the IV fluids do help with my stabilizing my hr and bp. What has not done well is that the line is sitting near a nerve so I've had lots of nerve pain off and on. The worst part for me is that I was sensitive to adhesives and tapes beforehand and I did ok with Tegaderm for the first 7 weeks and then my arm said "no more". We tried various types of dressings and now ANYTHING and EVERYTHING that has adhesive gives me a very severe reaction. Every nurse and every Dr that has seen my arms gasps in horror when they see my arm and they all say, "We've never seen anything this severe with a picc site before" (Don't you just get sick of hearing stuff like that???!!) Luckily the insertion site itself has done really well aside from the skin irritation. Anyhow, the edema in my arm is not wanting to subside even though we've gone to a complete cloth dressing (which isn't sterile so it increases risk for infection) and the new Dr where I now live, wants to pull the picc and replace with a port. She said something about she would give me the option if I want the port in my arm or in my chest. In some ways I really don't want a line at all. I have a pacemaker so if I get an infection it's more serious than that of a "typical" patient because the pacemaker wires could have to be removed however, at this point my veins are shot and I am getting fluids, nutrition and some of my meds via IV access now and the Dr says this will probably be a lifetime issue in my case. For some reason the port seems scarier to me (probably because I don't know as much about it). Any experiences from folks here? I was leaning to wanting the port access in my arm but I don't know if that's a good option. The picc line in my arm has caused lots of nerve pain in addition to limiting me in what I can do. I was told I would be able to be "normal" with the picc but I found with moving that was not the case. If I try to pick up anything of significant weight the line acts up and wants to inch out. Any experiences or words of wisdom would be welcome!

I'm so sorry to hear this Carmen! I sure hope you are able to do okay with the Gatorade for now. Are they talking about replacing the port at some point when you fully heal? Take it easy and let your body heal and rest! Hugs to you!

Hi Amy! Glad to hear you got the picc and it's working well so far. The power piccs are designed to stay in a lifetime if needed and that's why they told you to rotate days but as Melissa said, it shouldn't make that big of a difference as long as you are infusing only saline. You may want to print a calendar off the computer and put your color coded days on it and check it off when you flush and clean the line. Having a "check list" may help you remember. Another thing I've found is that every hospital is different when it comes to their protocol for care of a PICC. Some have you flush with Saline followed by Heparin and others have you flush only with Saline. I've done both ways and not had a problem either way but I do prefer using the tiny amount of heparin just to be safe because early on in the game I had a line that nearly clotted off (not because of flushing problems but because there was a loose connection and air got in the line). I'm also happy to hear you had a good home health nurse. I've been through h*ll and back with a bad agency and when I finally switched and got good care I was shocked at how big of a difference it made. If you get a bad agency, do not be timid---call and complain and if needed file with the state. I've not had any line infections with my picc but I've had severe and serious skin reactions to ALL adhesives which forced me to go to a cloth dressing and my arm is still not healing well and it's not the best idea anyway because my picc line is not secured at all with only a cloth dressing. In my case, we will be pulling the picc soon and replacing it with a port. I'm nervous about it but I'm now on fluids, iv nutrition and other meds via line so I have to do something. It will get easier the more you do it and what helped me the most in the beginning was a detailed list of exactly what I was supposed to do and then the checklist as I mentioned.

John, You probably qualify for FMLA time IF the following applies to your situation however, the employer does not have to pay you for this time so that is another issue as well. #1 You have to have been employed with your current employer for 12 months and worked at least 1,250 hours. #2 You only have protection of FMLA if your employer has at least 50 or more employees and those employees live within 75 miles of the worksite. Also the FMLA allows you up to 12 weeks but if this time is taken intermittently, you will need to carefully and closely monitor both hours and days missed from works to ensure the employer does actually honor 12 weeks/60 work days. Some employers will even count hours instead.

John, I know how hard it can be on both you and Linda to have her up there by herself! I do have a suggestion that worked for me. #1 Look at your insurance policy to see if you have coverage for any home health services. If you have this coverage look in the rochester phone book under home health agencies (check to make sure the agency you select is accepted by your insurance) call and explain your situation and see if they can help. #2 Ask to speak with a Medical Social Worker or Patient Advocate office and tell them you need to find someone that can be with your wife. If your insurance does not pay for home health care then you may want to contact a company such as Home Instead Senior care or some other similar type company to see if you can pay them to sit with Linda some. They will NOT provide nursing care but they can be with her, push her in a wheelchair, help her get meals, sit with her during wait times at the clinic etc. Good luck!

Having been to Mayo in Fl several times....my recommendation (for the 2 cents it's worth) is to AVOID the neurology dept down there. They do not know the difference between NCS and POTS. The cardio dept is ok but it all depends on which cardio you get as to how much help you will obtain. The FL office ended up sending me to Rochester, MN because the FL location does not have the equipment to do all the testing and workup for dysautonomias. In the end, Mayo simply wrote my Dr's back home and said, "we have no effective treatments for these disorders either....you may want to keep re-trying the various different meds". Mayo was good for ruling out other diseases or problems that could have possibly been causing the dysautonomia. Vanderbilt was good with trying to help me find the right combo of meds. So these two resources, in my view, offer very different things and neither is very good with follow-up care because of the nature of their practice so just keep all of that in mind and try to pick the place you think will give you the most for your $.

Welcome!! First off, you are not crazy. Although I understand it's easy to FEEL that way sometimes. It sounds like you are on the right track though and at least know the Florinef helps you. Be sure to have your potassium checked regularly if you take florinef because your body will retain sodium and deplete potassium so for some people they need prescription potassium supplements. As for the TTT it does not give a definitive diagnosis. It is a useful tool to be used in conjunction with other testing and symptoms. There is a high percentage of false positives and false negatives with the tilt and many Dr's don't know how to properly read the results. It's a useful tool and worth having done in my opinion. Check out the main pages on this site. You may want to go to www.ndrf.org and go to the Patient Handbook and read up (there is a pdf format for free online)--there is lots of good info there and will explain the various tests and meds used. MSA is statistically not likely so try not to worry too much about that. Neuropathy is diagnosed in different ways depending on which nerves are being tested and it's a complicated process to have good testing of autonomic nerves (because most Dr's don't know how to do the testing and most do not have the equipment to test autonomic nerve response) Good luck with your search for answers!

I think we need to be careful about giving other people medical advice because it is often NOT dangerous to go off BB's cold turkey and it really has to be based on each individuals situation. You should be fine but certainly let your Dr know. Metoprolol is a short acting beta blocker and with the short time period you were on it there isn't likely to be much of a buildup in your system so as long as your problem has been tachycardia with a normal sinus rhythm you should be okay but you may indeed feel more uncomfortable for a while. Sounds like your Dr is unresponsive though so I would suggest you look at getting a second opinion at least and also talking to the pharmacist. BB's have a rebound effect when coming off of them so it may make your tachycardia worse temporarily. Generally, the longer you've been on a particular BB the longer the rebound effect.

What is the status on the T-shirts?

My understanding from most of the researchers in the field of Dysautonomia is that in MOST cases they will not find the root cause. I think at some point you have to accept that, try the various therapies that are out there and then re-focus your life on living the best you can instead of running yourself ragged with Dr's. Most of us have Dr's who are afraid of our cases but it's also true that the symptom controls available are not very effective for many of us. Just my opinion but I think another TTT is a waste of time and money.

I understand your dilema and I'm in a similar situation it seems. I was diagnosed over 10 years ago with NCS; then about 4 years ago I was told it was POTS. I went to Mayo in FL who said it was NCS and "something else" and they sent me up to Mayo in Rochester. Then I was told I actually have both NCS and POTS. Little by little my situation has progressed. I've also been seen by Vanderbilt. Now I'm being told that I have progressed into PAF and yes, you are right the data is conflicting but my experience has been that Mayo, Vandy (the 'experts' so-to-speak) agree with what data they do have to date that PAF is not fatal. I don't know that I necessarily agree with them because I see in my own life the damage that has been done to various organs which HAS to have a lasting effect. I do believe though that MSA is still the most scary/life limiting of the dysautonomia's that they know about. I am reminded by the researchers that those of us who have been through the research studies are their data. Since this field is relatively new and they've only been doing research for about 15 years now they are essentially learning on us. If it's been a few years since you've had the testing at Mayo you may want to see if they think repeating the testing would help identify your current status more clearly. At this point, it really doesn't change your treatment options and you still have the battle of symptom management so hang in there and do your best to find the balance between your need to know the specifics of what you are dealing with and living your best life. I hope that makes sense. I'm tired and brain fogged!

You may want to look on www.ndrf.org and read the patient handbook. PAF is not believed to be lethal although it is chronic and can be disabling (just like all other forms of dysautonomia). Have you, or can you, seek one of the autonomic specialists to be evaluated by (Mayo, Vanderbilt, Dr. Grubb etc) so that maybe you can get more definitive answers? You will find that MANY of the symptoms cross over between the various "diagnosis" (POTS, NCS, MSA, PAF) and you really can't go by symptoms to diagnose. It's best to have all the testing (tilt table, sweat test, qsart, catecholamine testing etc) done to determine exactly what portions of the nervous system are/aren't working which helps to narrow down the correct diagnosis. Many people confuse PAF with MSA but they are not the same thing.

There was a post on here just yesturday with a template letter asking people to join effort for awareness of dysautonomia by writing your local congressmen and senators. The post is now gone so I'm assuming it was removed but I don't know why it would have been.

check out this link.... http://www.socialsecurity.gov/disability/p...cular-Adult.htm check out this link.... http://www.socialsecurity.gov/disability/p...cular-Adult.htm You want to list POTS but I would have your Dr list IST or syncope as primary. You will also need to show that you have attempted the medications to control heart rate and blood pressure and that they failed. Then, and maybe most importantly, you have to show HOW your illness prevents you from doing activities of work (including a desk job) otherwise, they will most likely deny you. You and your Dr both need to let soc sec know how this effects your ability to sit, stand, crouch, bend, lift etc etc.

Sorry I'm late chiming in...been sick and in and out of hospitals myself. I wish you the best and hope you are feeling a bit better and looking forward to going home tomorrow!!!