Chaos

Just to clarify, Mestonin isn't a beta blocker. It's a totally different category of drug so if beta's don't work for you it might be another option to explore with your doctor. There is research on it relative to POTS. Personally propanalol worked for me almost immediately. Changed to Nadalol after a couple years as it's an extended release and propanalol is short acting in the lower dosages that are usually prescribed for POTS.

I think POTS is preceded by a viral illness in many patients which is where the whole "viral onset" concept began. Usually if they don't know the cause they refer to it as idiopathic rather than viral onset but every doc is different.

Yes, I get that same thing. Sometimes I check my blood sugar to see if that's the issue if my BP and HR are normal. If the blood sugar has had a rapid change though just seeing a single point might not give you an answer either. Sometimes I wonder if we are still getting the same abnormal release of neurotransmitters underneath but the meds we are taking are just masking the symptoms so we don't see the results i.e elevated HR etc. Don't know enough about the biochemistry of the drugs to know how they work, but that's how it feels in my body at times. Glad you are feeling better today MedicGirl!

Hi and welcome. Haven't tried Atenolol but have used a combo of midodrine with a beta blocker (propanalol, now nadalol) to deal with symptoms. I think mestonin is also supposed to help control HR without affecting BP in some dysautonomia patients. A certain percentage of patients get good relief with it but like every drug it doesn't work for everyone. Good luck!

Good thing about propanalol is it's short acting (assuming you don't have the LA form) so hopefully it won't take you a long time to recover if you react badly to it. Hopefully your doc is also starting you on a really low dose. Best wishes!

Here is a link to the actual letter from FDA to 23 & Me http://www.fda.gov/ICECI/EnforcementActions/WarningLetters/2013/ucm376296.htm Here is a link to another article about the issue http://www.forbes.com/sites/matthewherper/2013/11/25/23andstupid-is-23andme-self-destructing/ While it is not wise for a company to not communicate with FDA for 6 months after being warned about their product being considered a medical device, I find it somewhat disturbing that FDA wants to regulate this because, in part, 23 and Me "markets the PGS for providing “health reports on 254 diseases and conditions,” including categories such as “carrier status,” “health risks,” and “drug response,” and specifically as a “first step in prevention” that enables users to “take steps toward mitigating serious diseases” such as diabetes, coronary heart disease, and breast cancer." (My bolding) How terrible that people might actually use independent thought and reason to research things and take steps to prevent possible health risks. Oh Horrors! Preventative medicine!

Always good to hear from you and know that you are still doing well. That's great news! Thanks for sharing your info from the POTS specialist you saw.

I took it for a couple years and it was very helpful. I was told by my doc that it was short acting so eventually my POTS doc changed me to nadalol to get better coverage in symptoms. Propanalol was one of the most helpful meds I have taken for my POTS. Just goes to show how we are all so different. Good luck with your trial of the med.

I tried most all the SSRI's and SNRI's and couldn't tolerate them. Was afraid to try Wellbutrin because I'd had friends have bad reactions to it. I finally gave in and took it and it was probably the easiest med I've ever started. I was shocked. For me the SR worked great. The XL when I tried it made me wake up every morning at exactly 4 am. Was talking to a friend who is a psychiatrist and he was able to explain the chemical difference between the two forms and why that could happen so I didn't feel totally crazy. Went back to SR and had no more issues with it. I took florinef and Wellbutrin together for awhile but didn't care for florinef due to side effects. I've had palpitations and PVC's on the Wellbutrin but don't think it's related for various reasons. My POTS neuro wasn't a fan of Wellbutrin when I started seeing him so he had me wean off it for several months. My POTS symptoms got much worse so he's now a believer in it for some people. Good luck!

Looks like from your signature that you have peripheral neuropathy so there may be some pooling going on. Do you see discoloration or swelling in your legs when you're upright? I personally don't get that often and generally haven't found compression stockings to be much help. However, I think I tend to pool more in my abdomen and do get some help from wearing compression garments over that area (like under armor or something along those lines). Were you by any chance a pilot and might have a G-suit? Some people have found those to be helpful. Again it's something you should check with your doc since you have so many issues going on. As far as the meds hiding vs exacerbating a problem...probably hard to say. Since they are dealing with the same neurotransmitters that are controlling these other issues like HR, BP etc,it may be having some effect. Like Katy said, they are meds that are frequently used to treat POTS symptoms. On the other hand, with everyone being so different and people processing the meds differently thru their livers etc, it's almost impossible to say how they will affect any one individual I think. Not related but in a similar vein I read an article recently about how they found an old style anti-depressant works to treat lung cancer better than the newest cancer drug. So it's really hard to know exactly what all these meds are doing in our bodies until you stop them and re-test without them.

Wow Elizabeth, sounds like you've been thru the ringer. Glad you've been able to rule out several things and sounds like you are working with knowledgeable providers. I've not had any kind of similar rebound reactions when my midodrine wears off. It seems like you are having pretty sever reactions when it wears off so you might want to let your doctor know about that. Since you are having good effects from the midodrine while it's working, it's too bad there's not something that would provide similar effects with better long term coverage. Best wishes!

Can't help you with FMLA, but for me I had to go to employee health when my doc put me on medical leave for the 8 weeks. They were the ones who started the short term disability process. I only qualified for one week of short term. However, they also said I should begin the process of applying for long term disability at that time "just in case" as it can take a long time to get it. Then if I was able to return to work it was no problem to not use it but if not it would be available. I stalled a long time in applying as I was convinced I was going to be able to get myself back to work but eventually they pretty much forced the issue. I still plan on getting back to work somehow/sometime but at this point it's not realistic or feasible.

Hi, welcome and thank you for your service! I'm sorry for all you've suffered as a result of your service on behalf of us. I am guessing that they would suggest you stop the effexor and lexapro as they are both meds that affect the same neurotransmitters (e.g. norepinephrine, epinephrine, seratonin, etc) that are involved with dysautonomia. By stopping them they may get a better picture of what's really going on. I have had all my tests while on my meds and have always wondered how they would differ if I was off them but none of my specialists wanted to do it that way. Maybe you can let us know how much your results differ when you have the repeat tests off the meds if you would be so kind? Glad you found us and hope we can be of some assistance or support to you. hugs!

Never drank diet soda and avoided artificial sweeteners so that wasn't the cause of my POTS. (I always insisted on having real sugar with all the artificial chemicals in my sodas. ) Like Yogini said, I had healthy habits in most every other part of my life and a soda a day is my source of caffeine. I always drink them over a lot of ice as well so they are pretty diluted.

There is a lot of overlap between Fibromyalgia, ME/CFS and POTS/Dysautonomia so you may still be looking here for answers to some of your questions. Glad you got a diagnosis and somewhere to start looking. You might also look at "overtraining syndrome" to see if that has any similarities to what you're experiencing.

Not sure if midodrine would be causing cerebral vasoconstriction as it appears that it does not readily cross the blood brain barrier. At such a low dose I wonder how much is actually getting into the brain. I'm not a pharmacist so just throwing things out here as ideas. Do you only see your veins sticking out when you are warm or do you also notice them when your limbs are in dependent position, i.e. hands are hanging at your sides? Usually a classical 'hyperadrenergic' POTS patient has high NE levels along with elevated BP upon standing. I'm like you with low BP usually so my POTS specialist says I have "hyper" characteristics but he says "you'd never see these low BPs with a 'true' hyper POTS pt." He thinks the pattern we have may be directly related to how the body is compensating due to the EDS. From a practical standpoint, I suspect what you'll do is what your physician is willing to try next. Since you're seeing a specialist now he may have his own ideas of how he likes to work thru the options based on what he knows about your case.

I always worked part time so couldn't get covered by FMLA, even though I'd worked for the same employer for many years. I too was on my feet 8-11 hours a day and had a pretty physical job so couldn't continue with that. My doc put me on medical leave "for 8 weeks" to get symptoms under control. That was 21 months ago. Still haven't been allowed to go back to work.

Mylan makes mine although at one time I had another brand (can't remember which, sorry) but the pills were considerably smaller and came in various colors depending on the dose. They actually seemed to be more potent than the ones I usually take. Made me wonder if they just had less fillers in them?

Just attended a continuing ed. course on mito disease last week with a specialist from New Orleans. I think there are just a few docs that specialize in it in the country. This one was a geneticist. Not sure if they all are. Hopefully others with personal experience will chime in but I think the absolute test is a fresh muscle biopsy, although frozen biopsy can test for most things. Because it's a relatively new field there's a lot that's unknown and if your test comes back negative, it doesn't mean you don't have mito disease, just that you don't have one of the types that they've identified so far. Sounded like, from this doc anyway, that the treatment is largely supplements/nutritional etc but he seems to be having some success with helping his patients. According to this doctor there is "nothing" that absolutely rules out mito disease as a diagnosis. Good luck

Yes, it would be nice it they would do more studies to figure out a LOT of things about dysautonomia. However when I was talking to my doc at Mayo at my last visit, he was talking about several studies he wanted to do. He said it's "nearly impossible any more to get any funding for them". If he is having trouble getting funding when the insurance companies are paying to keep his section of neurology open, you can imagine how much harder it will be when they aren't. Not only insurance companies want to make a profit, but hospitals and clinics need to do the same. If insurance companies stop reimbursing for testing, hospitals will not keep offering the services. Then the docs who are currently performing those tests (and research) are going to be forced to start seeing other types of patients and we will once again be left out in the cold. TTTs have a fairly significant rate of both false positive and negative results so having other data points (like Qsart, catacholamine tests, etc) help make up a more complete picture. For me, the totality of data helped my doctor determine a treatment plan. It has also probably SAVED my insurance company money in the long run because I'm not running from doctor to doctor, or to the ER, because of my symptoms now that I have had these other tests. The other point is that by having these centers where more complete testing is being done, you have access to doctors who see more patients with your condition as opposed to just having a TTT at your local hospital and being treated by a doc who has never heard of POTS or maybe has read an "Up to Date" article on it. That helps them with their research as well as helping the patients who benefit from their specialized knowledge.

This is definitely a very disturbing development. It's hard enough for patients to get to a doctor who knows something about our condition but then to not have insurance cover it once they find a provider is just ridiculous. I know DINET has a policy against "soliciting" on this forum, but I hope they will allow this thread to remain as it is critical to the well-being of all Dysautonomia patients. If we don't have insurance coverage, we won't have doctors who can get paid to see us therefore no one to do research and thereby no help for us. This is something that we really need to be informed about and the forum is one of the few means we have to communicate something of this magnitude.

A major insurance company has recently announced that it will no longer cover autonomic testing. We all know how devastating that will be, not only for individual patients, but also for Dysautonomia research in general. Here is a link to the story. http://www.dysautonomiainternational.org/page.php?ID=166 At the bottom of the story is a sample email if you are so inclined to help protest this kind of decision. You might also want to get your friends and family involved. This company has decided to stop paying for the testing and another one is considering following suite. We do NOT want this to happen. After all the years of being shunted from doctor to doctor trying to get answers, the last thing we need is this!

Instead of an abdominal binder I use the "foundation garments" (something along the lines of spanx but cheaper). They help with warmth as well as the blood pooling issues and are more comfortable in my opinion than a binder. May not provide quite as much support though so a binder may be better in that regard. If you search this forum for the topic you might find some good ideas of places to order stockings from as there have been other discussions on this as well.

Think you know your body best and given your reaction to the propanalol I can certainly understand your hesitation to start the nadalol. (Personally I love nadalol but that's me, not you.) Seems like a lot of docs recommend lifestyle changes first before they add any meds. Did your doc mention raising the head of the bed 4-6 inches? My POTS neuro at Mayo did and I am trying to find the article that talks about why it might be helpful but it might be something to consider. If nothing else it provides comic relief as you keep sliding down and trying to climb back up every night. Good thing about lifestyle changes is they are pretty benign and you are in control. Also don't have a lot of side effects for the most part. I have heard people having success with them. Like everything else with this condition it's all so individual the only way you'll probably know is to try. Good luck.

Hi and welcome. Sorry for all you are struggling with at the moment, especially while trying to care for 2 young children. That's a full plate you are carrying there. Like others have said, I think every one of us is different and have different underlying etiologies that play into our symptoms and prognosis. There seems to be a group of people with dysauto who are able to exercise and improve, some stay the same and then there seem to be others who are markedly worse for trying to push exercise and activity or maybe they just get worse over time regardless? Don't know that the stats are really there yet to prove it on a large scale, although in the pediatric population that seems to be the case as reported in a recent study from Mayo. Personally, despite doing cardiac rehab and pushing exercise at a high level I continued to get worse until I reached a point where my doctor mandated my leaving work to help get my symptoms under better control. That was almost 2 years ago and we're still not there. While we're all different, you and I have a lot of similarities in diagnoses. I think there is some thought that ME/CFS and dysautonomia may all be parts of the same spectrum of disorders. Where exactly EDS and Mast Cell fits in with that, not exactly sure although there are a lot of us with those co-morbidities as well. Hope you get some answers from your appt.