Poohbear

Interesting. Keep us posted on your progress!

I don't know that I have much advice for you but I do have lots of empathy! I have had lots of injuries as a result of fainting. Broken toes, foot, fingers, wrist, ribs. Tons of pulled muscles, concussions etc.. I live with bruises all the time. I have a power chair and since I am using that more and more I injure myself much less but it's hard to resort to using the chair all the time because I WANT to be up and moving around. I use a pilates machine to keep my muscle tone up and that works well for me since pilates is not cardiovascular (although for me, it's cardio exercise enough because my heart rate still goes sky high). I've learned to vacuum from the power chair but it is very challenging to do so. The hardest thing though is not having an I.V. pole that will attach to my chair so sometimes I'm trying to operate the power chair and move an I.V. pole at the same time. I hope you are feeling much better by now and that your teeth aren't hurting!

I too have small fiber/peripheral neuropathy. My local neuro as well as the research facilities I've been to say this is common with folks like us AND that it's also common for this not to be an issue early on in the illness/syndrome. My neuro says she tends to see this develop over time-- in her practice, on average 8-10 years after POTS symptoms first appear. I get severe pain from this at times but nothing has worked. Fortunately the pain doesn't usually last for long periods of time for me. I have found that keeping my hands and feet warm all the time seems to help prevent the pain

Rachel, I haven't read all the other replies so I'm sorry if I'm repeating something someone else has already said. I have also been diagnosed with this and have been intolerant to various meds for different reasons. Honestly, the thing that has helped me the most is listening to my body. I am more of a night owl naturally (I always have been). I found that if I stay up until midnight-ish I tend to get more consolidated sleep and deeper sleep. I still don't get enough hours a night and I"m still tired all the time but this has helped. It is important to get up at the same time every day. Basically you are making yourself stay up until you CANNOT stay up any longer and then when you go to bed you are most likely to sleep a bit longer in the deeper stages of sleep. I also find that if I eat higher in carbs in the evening/night I do not sleep as well and I also find I sleep much better if I do not eat anything 4 or 5 hours before going to bed (I have gastroparesis though so my food tends to sit in my stomach all night anyway). Good luck with getting approval for the meds you need.

This is a GENERALIZATION but.... the majority of insurance carriers follow medicare guidelines when it comes to this type of thing. Private insurance will usually pay BETTER than Medicare but if Medicare out right denies coverage for a procedure or an item then the majority of private insuranc will also deny coverage. This is the case for many folks when it comes to compression hose. Having said that, you may have a better chance for appeal with a private carrier but you would probably have to show substantial savings to the insurance company and have your DR write a detailed and thorough letter. For example, if compression hose lessened your ER visits then you could show the cost to them is a savings in the long run. It's a stretch in this case and you would still have to purchase them up front yourself to even know or prove this type of thing.

It's always good to keep an eye on things. This time of year is when all the colds, flus and viruses start so it makes it harder to tell sometimes what is causing what. I hope you feel better soon!

I wish I knew what to say. I'm thinking of you. Keep us posted as you feel up to it.

Amy, I hope you are improving with each day and getting stronger! Hang in there and know that you are thought about and missed on the board!!

Thinking of you and hoping you will get some solutions to your issues soon. I can relate to the lung problems and the port problems. I had a lung collapse earlier this year that was almost a total collapse on one side and I never had the "typical" symptoms that one is "supposed" to have. I kept telling them for days that I couldn't breathe and I kept telling them their breathing treatments were not working and it wasn't what I needed. When I FINALLY got a Dr to listen to me and order an xray they all flipped out when they saw how bad it was. Once they saw how bad it was though they were rushing me down to surgery. Long complicated story but they actually had to put me under to get the chest tube in. Anyhow...I hope you don't have to deal with anything like that and that new med clears this up. Why have they not taught you how to access your own port yet? You may not feel up for all of that yet but it's easy to do once you get the hang of it. Mine is finicky and now I won't let anyone else access it but me because if I access it I usually get it right on the first try but when nurses go to access it they don't do so well (even though I explain the quirks with it) and I get stuck multiple times. I'm pretty adamant about it now. My home health nurses let me do it but occasionally at a Dr's office I'll have an issue with a nurse who will say, "Oh, NO! We can't allow a patient to access their own port" I always reply, "Look, I do this several times a week at home, I have home health care. Then I politely tell them that it's finicky and very painful so the option is to let me access the port or they don't get the blood draw". I've had several ER visits the past few weeks and I always go with my port accessed so I don't have to fight them about it!!!!! I hope you've got a great selection of funny movies or whatever your heart desires. Know that you are always in my thoughts and prayers! Sending hugs your way

I've had several lumbar tests done. Are they just drawing a sample of fluid for testing? If so, this should be pretty straight forward. Expect some pain and discomfort but generally they have you lay down for a few hours and rest overnight (if you are having this done in the afternoon then just lay flat for the night). Try to lay down in the car on the way home. Newer studies show that most of the time, if you are going to get a spinal leak headache you will do so fairly soon after the procedure. You need to rest to try to help your body heal though so don't engage in anything too active for the first day after procedure. You can help your body a lot by drinking LOTS of water both before and after the procedure. It will help the procedure and it will also help your body heal that hole. Bedrest for several days is probably not necessary unless you are having some lengthy procedure done or unless you have complications from the test. I did have soreness for a long time though.

I have runs of V-tach but they are short in duration. My pacemaker does record the number of runs and rates each month so the Dr's keep an eye on it but they feel it's ANS related. I'm more concerned about it then they are. It often wakes me out of sound sleep and it's miserable when it happens and it also tends to set off ANS storm after it happens.

Hi Sunnyfish!! I hope you're feeling better with each passing day. Hopefully you've gotten my cards to help cheer you up as well. Have they cleaned out your bowl well enough for you to consider going back to your home tank soon? Talk to you soon!! Big hugs coming to you!

Here is an old link that you may find interesting. http://www.pediatricnetwork.org/medical/CF...dvolstudies.htm There is a newer journal article out published by Vanderbilt that also cites the above and adds to what you are raising. If you are interested in the article pm me and I can email it to you (it's only 4 page article) I have had several blood transfusions this year--not for the purpose of correcting my blood volume but it did help with that issue for a couple of weeks. It is a temporary solution though so the risk vs. cost vs. benefit is not so good. That would be my guess as to why it hasn't really been done much--just my guess but it's pretty much what you think as well. I had to have filtered blood and I still had reactions to the blood and I learned that getting a blood transfusion is not as simple as many people think.

Check out this pubmed abstract as well...it has some newer info and may lead you some additional searching ideas if you so choose to look into it. http://www.ncbi.nlm.nih.gov/sites/entrez?D...Pubmed_RVDocSum

I'm SO HAPPY for you! Congratulations and keep us posted as you feel up to it! I hope the adjustment continues to go well for you.

Lauren, I was on Florinef for several years. The main problem I had with it was drops in my potassium, weight gain and high bp. After several years of being on it, my body kinda went nuts and the Dr's determined it was the Florinef so I had to go off of it but all in all, I did well on it as long as I watched my potassium and bp. When you say anti-arrythmic I think of drugs like Norpace. If that is the "class" of drug your cardio is discussing then I would be leary I think. First of all, you owe it to yourself to try the "typical" course of meds first--beta blockers, calcium channel blockers etc etc. Secondly, before you take a drug such as norpace I would get 2nd and 3rd opinions, move forward with the EPS and try to see a autonomic specialist if at all possible. I'm no Dr and of course I don't know your history but IMO it makes more sense to try Florinef and beta blockers first if the non-med options have not worked for you. Good Luck!

you need to read the main pages under "what to avoid". There is lots of data and research on this so you will find all you need if you search for the topic. http://www.dinet.org/what_to_avoid.htm

This can be a tricky issue. There are some differences between getting SSI vs. SSDI payments. Are you only getting SSI payments at this point? Has your SSDI payment been approved? If not, you may not yet have Medicare coverage. Once you are approved for SSDI payments then you will have Part A Hospital coverage as of the date they deem you disabled. For Part B--Dr's visits and other outpatient care you will have to wait for 2 years from the date Soc Sec deems your onset date to be. Once you are approved for Part B you will have premiums to pay for it (Part A is free to you). If you are receiving both SSI and SSDI payments then you may qualify for state assistance to offset the premiums for Part B and/or if you are receiving SSI payments then you may want to check with your state to see if you qualify for your state's Medicaid program. THis is from Soc Sec website: Before age 65, you are eligible for Medicare hospital insurance if you: get Social Security disability benefits-SSDI and have amyotrophic lateral sclerosis (Lou Gehrig's) disease; or have been a Social Security disability beneficiary for 24 months; or have worked long enough in a federal, state, or local government job and you meet the requirements of the Social Security disability program.

Rachel, In terms of the EP in GA...yeah...I was in the same boat---they didn't know what more to do for me themselves but they did facilitate my getting in with Vandy, Mayo Clinic's etc etc. AND they were willing to follow the treatment plan and call for help when they needed it. It got to where the EP would say, "You've tried everything I know so what do you want to try next?" and then they'd write for whatever we all agreed on. At Vanderbilt--in terms of the research study. At times getting through the four hours is difficult. You have the rest of the day to recover though and as Melissa pointed out...if you get too sick (pass out etc) then that usually warrants stopping that particular study. It's research but you always have the right to refuse and withdraw from the study at any time. As for the records, I got most of mine before leaving there. They don't always share everything with you but they share most of it and they do give you the summary of which meds were used on which days and limited info on how your body responded to each med. If you go for the med trials I would recommend keeping your own journal about how you felt, what your symptoms were etc. In my case for example, I had a good heart rate response to one drug but the side effects were awful. So even though they recommended the drug to control heart rate it didn't work for me because the side effects were bad and in fact, I ended up being allergic (which we didn't find out until I had a higher regular dose) so then we went on to option #2. Sounds like you have a lot up in the air on top of trying to make another move. You may find that once you do go to a specialist and have their records that your local Dr's are more willing to follow their treatment plan regardless of where you live. When I was in Georgia nobody really knew how to treat me but they were usually willing to follow the specilists outline and I certainly didnt have as much grief about whether I had a correct diagnosis once I went to the "top specialists" (which in some ways is sad because even the "top places" don't always get things right for every person). I hope you are able to come to whatever decision is best for you and to be at peace with it.

Goldicedance, I just wanted to say that the "q-sart/sweat test" that Jacksonville Mayo clinic does is NOT the same one that Mayo in Rochester does. Not only that, but they (Jacksonville) measures something different than the other clinics. I wasted my time and money in Jacksonville and in the end THEY had to refer me to their Rochester, MN clinic because they said they did not have all the equipment and testing that the "home base" had.

Hi Rachel! I'm so sorry you are stuck in this boat. I've "been there, done that" and to some degree, remain there. Based on my experiences with the various places, your current location etc. here is what I say: 1-Don't waste your time with Mayo in Jacksonville. It's not that you would get no help (although you might not) but if you saw the cardio I recommended in Georgia he knows just as much if not more than the Dr's in Jacksonville AND Jacksonville does not have the equip. to do much of the testing you could best benefit from. 2-If you need the more sophisticated testing and want to rule out some root causes (i.e--sweat test, q-sart and other autonomic testing) then aim for Mayo in Rochester or Vanderbilt with the understanding there will be little follow up. 3-If you are looking for the right combo of medications then the inpatient research study at Vanderbilt is probably the way to go because they really do aim to find the med combo that they think will work for YOU and it's based in part, on your medical records and their autonomic testing. I have had very good experiences with Vanderbilt and they have been most apt to follow up, return calls and emails to my Dr's etc. Especially being in GA this may be the case for you because you are reasonably close and they have a working relationship with the Cardio in Atlanta already. 4-If you don't qualify as a research patient and you've already had all the fancy tests then I don't know that I would spend the time and money going anywhere because although Dr. Grubb and the others are nice and could offer emotional support, the reality is that you probably won't get any more answers than you've already gotten and you may be more disappointed and more financially drained then anything else. Hope this helps in some way and please do keep us posted. Feel free to PM me if you want more specifics on my experience, specific Dr's seen etc.

Research and read the ENTIRE fine print of the policy before purchasing this type of insurance. Most likely, since you now have a diagnosis, the policy would exclude coverage for your diagnosis or anything very closely related.

Something that hasn't been mentioned yet..... Many insurance carriers (including Medicare) will only pay for ONE mobility device and certainly only one wheelchair for a lifetime. There are exceptions but this is the "standard" and "typical". That being said, the best advice I got from PT/OT was to "Pick the chair that fits your needs now and the one that will still accomodate you 15 years from now if you are worse off". Read your insurance policy carefully before proceeding with this process. If your insurance has already paid for a walker or some other medical mobility device they may not pay for a wheelchair.

You may want to read this link. http://www.ichelp.org/TreatmentAndSelfHelp...tivityTest.html

RJH, A compounding pharmacy is one that makes a medication specifically for you. For example, the lowest manufactured dose pill of metoprolol is a 25 mg pill. If I break that pill in half it would be 12.5 mg which is still too much for me. Quartering the pill is difficult and still too much for me. A compouding pharmacy, in this example I am using, uses the same main ingredient that the pharmaceutical company uses to make the pills but alters the strength as needed. They take the powder form of metoprolol and mix it with whatever inactive ingredients are needed to create the strength I need. Then, I end up with a prescription that works for me--meaning 1 to 2 mg of the drug at a time vs. the manufactured pill in which it's difficult to get less than 12.5 mg even in the lowest dose pill. Many women now use compounding pharmacies for HRT. The thought behind it is if you can take only what YOUR body needs then you may greatly reduce the side effects or complications. It works for me in the case of metoprolol. If I take the higher dose pill form it kicks in my asthma, makes me too groggy, depressed etc. Taking it in a tiny dose works for me without the side effects. It is sometimes difficult to get Dr's on board though----my Dr's are now really supportive but initially some of them struggled to believe that such a tiny dose of BB would work and most of them did not even know drugs could be compounded. I "lucked out" once while in the hospital and I had a Dr who looked at all we had tried, saw how reactive my body was to medications and decided to try me on an infant dose and it worked. We were all shocked but excited to find something!! To this day, my Dr's still get a chuckle that this tiny dose actually works for me (they say most adults would never respond in any way to this tiny dose) but they are believers after seeing my case. Without the ability to get this drug compounded there would be nothing I could take (tried them all already). The down side to compounding pharmacy is that there is greater room for error because there are not the checks and balances that a mfg. plant/drug company has. You really have to know and interview the pharmacist. Learn what their training, background and experience is. Learn where they buy their supplies etc etc. Another down side is that it is more expensive because it's 'custom made'. Some insurance companies will pay and some will not. Most are pretty good about it if you can show documentation of the drugs you already tried and can substantiate the need for a small dose. ***Another option to consider in regards to medications. ASK a pharmacist if the medication you want to try is available in a liquid form (they may have to order it but often it is available). I have found that this is another good option because you can adjust and lower the dose this way as well. I tried nortriptyline (sorry if i'm spelling this wrong...I'm really tired) in liquid for nerve pain and was able to greatly reduce the dose by taking liquid.