Poohbear

Well....this is just based on my personal experience. I have been to Mayo in Jacksonville, FL twice; Mayo in Rochester, MN twice and Vanderbilt too many times to count. Mayo clinic is good for ruling out rare potential root causes but for the majority of folks the root cause is still never found even with the extensive testing. All-in-all I have gotten better care from Vanderbilt when it comes to autonomic issues. With all of that being said, none of these centers have 'magic answers'. There are numerous medical journal articles out there that go over what meds and behavior modifications are used. Your local physician should be able to read up and educate themselves a bit and try you on those meds. If they don't work then none of the other centers are going to have any new meds to try either. If you can't get local physicians to help then you may have to go to one of these centers. FYI---Univ. Mississippi Medical center in Jackson, MS is gearing up to open an Autonomic Lab and the Dr. heading it up knows what he is doing. So for any folks in the deep south that may be another option. If you want more info PM me.

Generally speaking, PICC lines are intended for more short term need. Like if you need I.V. antibiotics for 10-14 days. You can, in theory, keep a PICC line in for months but in reality it usually won't work that way for a long list of reasons. PICC lines also carry a much higher risk of infection because you have an exposed outside entry to the vein. Ports are more invasive to place but are "enclosed" under the skin. With a PICC line you can't get it wet...you either can't shower or you have to take much effort to wrap and tape everything so that no water gets to it. With a port, as long as it is not accessed you can take a shower, swim etc. I have been to a few facilities (mostly large top-notch, teaching hospitals) that have the accuvein (or something similar to it). I have not found it to be helpful in my case. You can see the veins all you want but they still blow, roll, etc. I've even had use of interventional radiology where they used fluoroscope guidance but if you don't have the veins there is nothing to see. And, again.....just because they see them doesn't mean they can successfully access them if your veins are truly in bad shape.

megan2, I don't know what YOUR answer is....if you are having to be admitted on a regular basis you may need to seriously consider the port option. Research, educate yourself on the pro's and con's and then make the best choice you can---that's all anyone can do. I was landing in the hospital two or three times a month for well over a year (literally) and had no vein access left anywhere in my body. There were spending over two hours trying to get a line in me. It was difficult for them to even get a PICC line in me and when the PICC wore out they had a really tough time finding a vein for the port. I was in a similar position (and still am even WITH a port). Long term the goal is to find other therapies that will work in the long run because the port is not designed to be a "forever" option either. Have you tried medications for the intense vomiting? It sounds like they don't have problems accessing you but that you have a frequent need for I.V.'s. Have you gotten your Dr to write an order for you to go to an infusion clinic? This would save you the hospital visit but still get you what you need AND it would give you more time to work with your Dr's to find an effective treatment for the vomiting so that hopefully you could avoid the port. In reference to some of the issues discussed earlier in this post.....there is another issue I continually run into that folks who are considering port need to be aware of. Everybody says, "Oh, if you are difficult to access get a port and then you won't have that problem" . Well....first of all that's not always easy either because I can tell you that when I am dehydrated they can't get blood return even from my port. The other problem is that most Dr's offices, labs and EMT's are not allowed to access a port and/or they don't even have the supplies needed to access it. It requires special needles and supplies and few dr's offices stock these supplies. So, 95% of the time when you go to a dr office, lab or have to call an ambulance they are still going to have to find a peripheral access. So being a "difficult stick", in and of itself, is not enough reason to get a port and probably won't accomplish what you expect it to.

I was told by more than one nurse that you, as the patient, can always refuse blood draw or i.v. until the IV spec. team comes. It does delay your treatment and could prolong the time you are at the ER but it is an option to potentially avoid some unnecessary sticks. If you have to frequent the ER and your main reason is for IV fluids then I would suggest one of two things: 1-Get hooked up with an outpatient IV infusion clinic to go to for fluids when you are needing them 2-Talk with your Dr and hospital administrators about the problems you have with the ER and ask that your chart be documented for the need upfront to call iv specialty team. Another little trick is to keep one of those therma-care packs in your purse in case you end up in the E.R. Many hospitals will tell you they don't have heating pads so the therma care packs are sometimes helpful to place over your arm to heat the veins and get the blood to rush to that spot so they can access the vein. You can also fill a sink with hot water and stick your hand in the water as hot as you can stand it for a few minutes and that will sometimes pop the veins in the lower arm/wrist up enough to access. Yeah, I would not call a punctured lung an easy fix. That happened to me and despite the fact I woke up from surgery saying, "I can't breathe" nobody really listened to me for three days at which point I had a major lung collapse and was rushed for emergency surgery, spent extra days in ICU and more than a week extra in the hospital and my lungs have never been the same ever since. Not to mention, the chest tube was the worst pain I've ever had in my life---much worse than when I had a spinal leak headache from lumbar puncture. I was on the strongest narcotic available and it didn't touch my pain.

2. Does it hurt to access it and draw blood or receive IV fluids or meds? Yes--you are still sticking a needle through skin and it is a larger diameter needle that has to be used for port access than the tiny needles you can use peripherally. 3. What is the risk of infection? With a port most Dr's will tell you it's not a matter of IF you will get an infection but WHEN. And then it becomes a matter of if the infection will be treatable before it kills you. Approx. 1/3 of patients that get Sepsis die. Over 1 million people die a year from Sepsis (not that all of them had central access though) and Sepsis is the 10th leading cause of death in the U.S. 4. Is the risk of infection HIGHER than the risk of getting an infection with a regular IV? Yes! Peripheral I.V. carriers only about .05%-.09% risk. Getting a port in is not always easy. If you have poor venous access then even getting a port in place can be a major battle. It took more than one try for my vascular surgeon to get an accessible vein even for the port (I had no vein options left for a PICC line either). I can relate to what you are saying about ending up in the hospital once a month and frequent ER visits but leave the central line options as a total last resort.

I don't know that I have any answers for you. It sounds like a tough problem. Have you tried calling your state's insurance assistance number (every state has one) and asking them for advice. I don't understand your statement about your partner's Soc sec being too high for you to get Medicaid. Are you married? If you are not married then I would think you would be considered "independent" and medicaid eligibility would be based only on YOUR income. Aside from that, the only thing I know to tell you is to fight for SSDI so that you can get on Medicare. Have you tried contacting the hospital social worker to see if they know of programs in your area?

Sorry you are having to deal with this!!! My situation was very different from yours as I have 'neurogenic' bladder but I have had virtually no problem with incontinence. You really need to see a Dr to rule out various things---there are a lot of issues that can cause what you are describing. I would suggest when you see your Dr that you ask him/her about doing kegel exercises and inquire to see if there is a physical therapy specialist in your area that specializes in women's pelvic floor issues. It may not FIX the problems but it may help rule some things in or out, it may give you some symptom improvements. One of those "won't hurt, might help type scenarios". Good luck!

Sorry to hear about Sophie....I will keep her in my thoughts. It's a confusing topic and there are differences of opinions among physicians. Some physicians don't believe in the term "autonomic seizures". A "true" seizure, if it is caught on EEG will show abnormalities (though these episodes can be tricky to catch while they are happening). Some seizures will still show changes in EEG waves within 24-48 hours after an episode but otherwise you would need to capture episode on EEG while it's occuring. If you have EEG changes then they are likely to diagnose you as having a seizure disorder. If EEG is normal but you have the autonomic symptoms then you may autonomic dysfunction but to use the word "seizure" in that scenario is medically incorrect. At the same time....and to make it more confusing for you ....people with seizure disorders often experience autonomic symptoms right before, during or right after seizure; I forget the percentage but it's really high like as much as 60 or 70% of patients with epilepsy or other seizure disorders. There are other symptoms that can distinguish seizures from "only" ANS dysfunction but it's too complicated to explain in a short post.

I would suggest you keep a diary of your pain levels. You can also draw the body (if you can draw....I can't) or you can google the term "pain diagram" and find one you can print; this will allow you to mark on the diagram where you experience pain. It's hard to know what to tell you to ask because they first have to figure out if you have any condition that falls under the scope of rheumatology. Beyond that I would inquire to make sure common vitamin deficiencies have been checked and corrected if applicable---low iron, low vitamin D and low B vitamins can all severely impact muscle issues and can cause muscle problems.

There is no problem with wireless routers and pacemakers. You can research this stuff on medtronic website and/or call them. For the newest pacemakers all typical household electronics, microwaves etc do not present any problems.

I have pacemaker for bradycardia issues and it has helped with that. It does nothing for the tachycardia or the POTS but I failed all medication so it was my only option. Just be careful to choose a Dr who truly understands the ins' and outs' of dysautonomia and it's relationship to your other cardiac issues. Any device comes with hassles and headaches and the pacemaker is no exception. I can also tell you that having a pacemaker doesn't necessarily mean you won't also need the medications. One piece of advice that I wish someone had given me; If you do decide to get a pacemaker try to have any MRI's you might need done prior because it's still not safe to have an MRI once you get a pacer and it seems everyone is always wanting to review my "mri".

My understanding is that coming off Clonidine can have a nasty rebound effect. I think that's true for many meds but I didn't realize how powerful an issue it is with clonidine until recently. Is he on the patch or pills? Talk to the Dr about a way to SLOWLY taper this down. You are both in my thoughts and I hope you find some 'tricks' to help get you through this rough patch.

I think there are some good points made in this discussion. It is certainly true that chronic illness takes a toll on the ENTIRE family and close friends. I think it's our responsibility to be as independent as possible and to acknowledge the pain and losses that our loved ones face in this journey. It's nobody's fault when illness strikes but often there is frustration, anger and a host of other negative emotions in this journey and everyone in the family needs a safe place to vent that and work through it. I know it isn't an option for everyone but I think a therapist can be invaluable--it is a place you can "dump" your feelings and frustrations and be heard, but it's with someone who isn't involved in the situation and somone who doesn't have to react in the same way family and friends may feel they should. Having said this---it's also true that you could do everything right and still lose a relationship. Some people simply can't handle it or don't want to. Is it possible we can be self absorbed? YES. But it's also possible that in some cases things won't work because our partner or other loved ones are self absorbed. We can only change ourselves. Yes, I think this is sometimes true. Like anything else.....if the foundation is weak or there are problems prior to illness then the illness may be the "straw that breaks the camels back" but isn't the 'real' problem.

My understanding is that POTS is not a true diagnosis. POTS is a term used to describe a Syndrome. If someone tells you that you have idiopathic POTS then that really means that the root cause remains unknown. Any Dr who gives you a "diagnosis" of POTS is simply basing that on your symptoms since they don't know what the root cause is. Even the people who were probably born with this are suspected to have an autoimmune component but to this day there is not yet confirmation of that--there are researchers currently working to find the antibody(ies) potentially responsible in those cases.

I did not like her. She didn't listen very well and ignored the input of other physicians. I didn't feel she was a good team player. She also jumped down my throat telling me I should be better now (I've had this disorder for a long time) and that most people improve. I felt it was the mentality of, "Since most people see improvement and you don't then this must be your fault or something you haven't done well enough" She told me I should "move on with my life" (I have no idea what she thought I was already trying to do!) I have seen others in that dept at Mayo and I would choose one of the others over her if I had a choice.

.It's actually the other way around----people with POTS are said to have Chronic Fatigue as a symptom but those diagnosed with Chronic Fatigue may or may not have POTS.

I've never heard of anyone throwing up every morning due to dysautonomia. I know there are many on this site who deal with nausea but I don't recall ever reading anything in all of my research or hearing from any physician why sleeping would cause nausea. To me, based on what you've written, it doesn't sound like a piece of the dysautonomia puzzle. I would certainly be asking your Dr to explain it to you again. Have medications, including anti-nausea meds been tried?

This isn't so much legal advice as it is about the disability system. I don't know if you would be eligible for student loans; I know you would not be eligible to ever have them discharged due to disability if you are currently disabled and taking the loans out. In general, it would not be good to take loans out if you can't pay them back. Student loans do not qualify under bankruptcy and the fed's can and will garnish your wages/disability earnings to get the money back. So, be sure you can afford to pay them back if you do borrow money for school. The bigger issue is that if you are disabled and receiving payment from SSDI (or some other disabilty service) you may have a hard time proving you can't work if you can take classes. If you take classes they may terminate your disability payments.

Maggie, I think it's normal and natural to expect to have Dr's who are truly specialized and knowledgeable however the reality is that in the field of various autonomic dysfunctions there are very few specialists across the country, the knowledge about these disorders in limited. Most people, no matter how extensive the testing they've had, do not find the root cause of their illness. That means that treatment options are still very limited and narrow--mostly consisting of fluid increases, salt increases, various beta blockers, midodrine, florinef, sometimes SSRI/SNRI's, sometimes combinations of several of these things. Then there are behavior modifications added in. While it is nice when you can get to a specialist it's also sometimes not helpful beyond diagnosis. Once a person has a diagnosis, they don't really need an "autonomic specialist" to play the trial and error game of medications. As many on this site have been around for years can tell you, even when you go to one of the 'top specialists' in the field they specialize in their own narrow piece of the autonomic nervous system and are usually unable to address all the needs of the patient. It would be unrealistic for us (in the case of dysautonomia's anyway) to expect any one Dr to treat us---the ANS controls too many organ systems and no Dr can be expected to specialize in the ENTIRE ANS system. There are MANY diseases and illness where little is known and the specialists are few and far between. This places patients who have those illnesses in the position of having to do their own research and advocating for themselves. Yes, there are cancer patients who have to bring in their own research to the Dr!!! There are several in my family with a rare form of cancer that is not known or understood by many oncologists (most oncologists never see the type of cancer that runs in my family their entire careers!). If myself or other family members were not able to research and read up and take things in to the physicians caring for these family members, they would have died by now.

I don't think Mayo would be helpful to you....you already have a diagnosis. Your local specialist needs to understand that Mayo clinic isn't any better at treating this in most cases than he is. That's because it's trial and error. Mayo clinic doesn't follow patients (for the most part) so all they will do is prescribe the top meds that tend to help people the most and tell you to try them. Your own local physicians can do that. Get copies of the journal articles that discuss the medications that are tried for folks with these conditions, read this site and other dysautonomia sites and get your local Dr to start prescribing trials. If you want to go to Mayo clinic to rule out certain causes or attempt to try to find the root cause then perhaps it's worth a visit but I think you will be disappointed if your expectation is for them to treat you or manage your case.

I have not had an ablation. I have my pacemaker for other reasons and had it prior to ablation even being a potential option. I have had lots of Dr's recommend ablation but I've also seen the 'experts' who are trained and cross-trained in this area who were able to explain the in's and out's of my case. I too many be looking at ablation down the road but as miserable as I am sometimes, the risks (for my case) do not outweigh my current situation. It would be great if it worked but statistically speaking, people in my shoes who have had ablations tend to get worse after ablation....not better. It's a long story that I do not feel up to typing out fully (I am currently recovering from surgery now) but the short version is that ablation was initially offered and I declined because I was still able to work. When things got worse and I changed my mind and decided to have the ablation the surgeon changed his mind. Over the last 6 or 7 years new data had been learned about the potential negative impacts of ablation for many patients with dysautonomia. You may truly need an ablation but all I'm telling you is that there are very few physicians who are truly trained enough in both dysautonomia and cardiology combined to be able to give you a well educated opinion. The last I heard, there were literally only a few cardiologists who were neuro-cardiologists and most of them were at Mayo in MN. You have a huge decision in front of you that could greatly alter your life (for the better or the worse)--this is the time when you have to go to the 'top' and get all the explanations and facts FOR YOUR OWN CASE (because everyone's is different) so that you can make the best informed choice. Being pacemaker dependent is not complication free either. There are problems and arrhythmias that the pacemaker can cause that are not always easy to correct. Again....things can start out great but over the years changes take place especially in the population of folks dealing with dysautonomia on top of other cardiac problems. Hang in there. Arm yourself with the best knowledge you can get, go to medical libraries and do your own research if possible and weigh all the pro's and con's. Listen to your gut once you've done those things--it will lead you right!

April, The potential problem with ablating again is that you may end up back in the very spot you are currently in only worse. They can completely destroy sections of the heart but the heart also has cells that can regenerate and other parts of the heart that can take over and do the job of the former part. It's complicated to explain but think of it like stroke victims or any brain injury---a part of the brain can be destroyed and sometimes it will regenerate and/or sometimes another part of the brain will take over the function of the destroyed part. You can only destroy so many pieces of the heart before you start having other problems that will be worse than what you have now. Plus, I think 3 ablations is the limit in terms of how many times they will ablate so you may not want to exhaust that option as young as you are. Hopefully Dr. Grubb can help you but personally, I feel Dr. Wen Shen at Mayo is much better trained in this particular area you are struggling with. Vanderbilt would also be a good option for another opinion but having seen them, I still believe Dr. Shen is the best for this piece of what you are dealing with right now. I was like you....the pacemaker initially was a life saver for me and got me back on my feet but over time it became less effective as the heart learned ways "around" the pacer. I do understand how miserable it can be and I feel for you. I started having problems with my heart in high school and have been dealing with these issues for 20+ years.

I'm sorry you are struggling so much. As for Johns Hopkins---I'm not sure I'm following your post clearly but to me it sounds like everywhere else....they evaluate you in bits and pieces. If you want other issues addressed you can request other consults but they may not occur over the same visit and even with all of that you are still lacking a Dr who would coordinate your total care. I don't find many facilities are good for coordinating total patient care....Mayo clinic comes closest but they are not the best to go to for all problems---it depends on what you are dealing with and what your current goals for treatment and evaluation are. I hope you get things sorted out soon and find someone to coordinate for you.

Bella, Not all Patients have low blood volume. There are many reasons why a person can have POTS or other forms of Dysautonomia and many have nothing to do with low blood volume. The only way to know for sure is to have a blood volume study but even that is not "fool proof" because your blood volume can change over time; still the test can sometimes provide valuable information to the patient. Different facilities do the test differently so it's best to contact the hospital you are having the test done at to inquire what their process is and what tracer they use.

Angela, Many POTS patients have high resting heart rates. My resting heart rate is seldom less than 100. BUT, IST is Not just a high resting heart rate; IST also includes any heart rate that is "inappropriate" given the activity level (which often includes POTS patients) Either way, Ablation is not necessarily appropriate for either condition