Chaos

Depending on how far apart they are, if the first one does genetic testing but you still want to see the second it might be ok because then you'd already have some results to discuss with the second doc. Since EDS type 3 has no known genetic marker it's usually diagnosed by clinical evidence so unless she has the vascular type or classical type, there wouldn't be anything to show from the testing anyway. I think some geneticists stay on and work with their patients longer term (thinking of Brad Tinkle and Clare Francomano) but many others just diagnose and dismiss.

Rheumatologists tend to use the term BJHS while geneticists tend to use EDS 3 or EDS/HM. Because there isn't a genetic marker for EDS/HM yet, some docs are not willing to call them the same thing but there was a review article by Levy that my geneticist gave me which pretty much concluded that they are one and the same. Given that there is nothing "benign" about it and given how many body systems are involved with it, most people are using EDS/HM or EDS lll currently....at least to my knowledge. Congrats on finding an answer as to the cause of your POTS. Now if they could just find some answers for EDS! I did read one article by an EDS specialist (MD) from South America (Bolivia? Sorry I can't remember right now.) who suggested that perhaps EDS might be somehow connected to the MTHFR mutation. He was theorizing that since those mutations are involved in the processing of B vitamins and folic acid and can cause neural tube defects, they might also be contributing to the collagen deficits that occur with EDS. Interesting theory and might explain why they haven't found the genetic marker for it in other places yet.

Sounds like BeforetheMorning gave good advice. Seems reasonable to me. It is surprising that the second geneticist, who it sounds like has good experience with EDS, wouldn't understand the tie in with dysautonomia. Although, when I saw a local geneticist (who was lovely) she also didn't get it. In fact she told me that she had seen loads of EDS patients thru her career but never one with dysautonomia. Then she went on to describe all the symptoms many of her EDS patients experience and I told her those were dysautonomia symptoms. She's been seeing patients with dysautonomia all along but didn't recognize it for what it was. I think she does now though! Some docs are willing to be educated and she was one of them. In my case it was serendipitous that I had just been diagnosed with the dysautonomia by a well known clinic so I could tell her all about it. Good luck. Hopefully the first doc will be great for you and you can cancel the second. But I've found it's always good to keep as many options open as possible when dealing with the medical profession.

Sorry you're having a tough time right now. I think we all go thru periods like this, especially when symptoms flare and the reality of our current lives hits us square in the face. I also think, for me personally, that any depression I get tends to occur more readily when I'm in a physical flare. It makes sense given that the same neurotransmitters that are involved in POTS (norepi, epi, dopamine etc) are also the ones involved with moods. So if they are "off" it will affect not only my physical symptoms but also emotional ones. The only way that I've found to get thru this is to do anything I can to keep hope alive. If I'm having a bad day one day, I tell myself that the sun will come up tomorrow regardless and maybe THAT day will be better. I try to remind myself that I've been living with this for 7 years and I've had good times and bad times so when the bad times hit, I try to focus on the fact that eventually a good time will come around again. My last bad episode lasted over a year so it was hard keeping up a good mental perspective for sure. But now I've had some better months, even though I still have some pretty bad days. At least having some good days intermixed makes things easier to bear. The other thing I do to keep hope alive is to keep researching as much as possible to explore every avenue I can to see what might be new that I could try to help my situation. This led me to see an ME/CFS specialist who is treating me with antivirals and anti-inflammatory drugs. This has been helpful. It also led me to look into 23 and Me (genetic testing) which showed that I have significant MTHFR mutations and led me down the path of trying various supplements which have also been helpful. It also made me search out an acupuncture doc who specializes in Neuro problems. She has been helpful as has a chiropractor who also has a lot of experience in "functional neurology". He doesn't do adjustments on me but has given me many helpful ideas and suggestions. As long as I keep finding new things to try it feels like I still have hope. I also find reading the current research to be hopeful as it reminds me there are people out there studying this stuff and trying to find answers for us. As long as they're trying to help, I can't give up hope. Hang in there! Sending you lots of hugs and warm regards.

I got so tired of my local docs doing this run-around with me. No one would change anything if they hadn't personally prescribed it so I was always being instructed to call this doctor or that doctor to see if they would change a dose or medication or whatever. It was really frustrating. Personally my POTS neuro agreed to manage all my meds and now my ME/CFS specialist does the same. I think these specialists, who are familiar with the fact that this is a multi-system disorder, are more willing to adjust any medication than their counterparts in the medical field who only treat one area. It would seem that a GP should also be willing to do that but it seems many aren't. I recently saw an integrative/holistic MD and even he seemed reluctant to suggest changing any of my meds without approval of the prescribing physicians. Maybe that will change as he gets to know me better? Perhaps if you can find (or have) a provider who is more comfortable treating POTS (or at least researching it) they would be willing to handle this. My PCPs have not had an issue prescribing my Wellbutrin in the past for this reason but currently my POTS neuro handles it. Congrats on the new baby! How fun!

I've been seeing an acupuncture doc who specializes in treating neuro patients. She does scalp acupuncture in addition to traditional treatments. In the past when I tried regular acupuncture I had horrible reactions to it, but this doctor seems to be helping some. I've also done specialized PT/body work similar to what's described in this video. Dr. Rowe who is presenting in the video is well known for his research into POTS as well as ME/CFS and hypermobility/EDS issues. This was an interesting study he did in conjunction with a PT at Johns-Hopkins recently. In my case, I did this kind of PT when I was early in my illness and while it was very helpful, the effects only lasted about 4 days and then I'd go back to feeling terrible again. I'm considering going back and trying this again based on the results of this study and another one yet to be published. I was a yoga instructor for years before I became ill but haven't been able to resume a regular practice as any type of exercise triggers post-exertional neuroimmune exhaustion in me. I miss it tremendously as it was a great practice. With NCS, I would be very careful about the type of yoga you try and how often you are having to change positions from floor to standing. Be sure to check out instructors and I would suggest trying to find someone with a medical background or a lot of experience as a teacher who has dealt with people with health issues. While yoga is a great practice, it can frankly be dangerous if done incorrectly and without correct supervision. It terrifies me to see what passes for "instruction" at some gyms. At the very least, look for someone with a 500 hour RYT certification or 20+ years of teaching experience. Tai Chi comes in various forms from the little I know about it. There is a gentle form which I have minimal experience with. If you tolerate standing ok, you might be ok with this form as you are rocking on your legs which will help keep the muscle pump active and keep blood moving up to your head. I tried this when I was teaching yoga and found it too passive for what I wanted at the time. Ironically it would probably be too much for me to handle now. It was a peaceful practice however. Good luck. I'd say it "never hurts to try" except I've had bad reactions to lots of things I've tried. However, I'm still trying new things and won't quit until I either get better or die. I'm just getting smarter and being much more selective in who I see and doing much more research about things before I jump into trying things than I used to do. Best wishes as you try new things.

I've been using it for about 2 years and have found it helpful for sleep and body aches. I wasn't sure it was helping until I stopped it and then it became quite clear. I've heard on other forums that it can take 4-6 months for some people to notice effects from it. There are several things that need to be considered when it's being compounded so be sure you have a reputable pharmacy who knows about those issues. Some of those specifics are reportedly that they shouldn't use long acting naltrexone and it has to be compounded with specific fillers that won't render it less effective. There's an LDN site that lists which those are but I don't have the reference right now. I'll try to find it for you. My insurance was covering it but recently stopped. It's still relatively inexpensive compared to many of the other meds I'm on. Good luck!

Thanks for posting this information! When I went to the site I found a link to all of last year's conference videos which had some great info on them. Haven't gotten to watch all of them but the one by Claire Francomano MD on EDS was interesting and if you're new to Dysautonomia the one by Dr. Guzman was good as well. Thanks again. Hope this year's conference goes well and hope we can see the videos again. So glad to know that some people are connecting these dots!

Diagnosed myself with help from a lot of people on here. Got the information and encouragement I needed to find the right docs and eventually got the right diagnosis from them. Are you in the same process?

LDN is low dose naltrexone. Here's a link to a review article on it's use by a researcher from Stanford http://www.ncbi.nlm.nih.gov/pubmed/24526250 Methylation is complicated and I'm certainly no expert but basically it refers to genetic blocks in one's ability to utilize folic acid (in particular) and B12 in the forms they are being presented in modern dietary forms. As one of my docs said, he was trained that it was no big deal because 20-30% of the population has these genetic mutations, but he's finding in his practice (specializing in POTS/ME/CFS, looking at acquired mito issues, etc) that >95% of his patient population has these mutations. While he doesn't think it's the cause of our problems, he thinks it could be a component that needs to be addressed. The C677T gene for example has been linked to high homocysteine levels and increased risk for thrombosis. According to Ben Lynch's website the A1298T mutation has been linked to The BH4 cycle is absolutely critical for these various functions: assists the breakdown of phenylalanine helps form these neurotransmitters: Serotonin Melatonin Dopamine Norepinephrine (noradrenaline) Epinephrine (adrenaline) cofactor to produce Nitric Oxide (NO)You can google Ben Lynch at mthfr.net for more info. There are also lots of other sources of info online about it. As you know B vitamins are critical in mood and nervous system function though so it might be a serious consideration to think about. If you want more links I can send you some. Hang in there. Depression is the worst!! That's why it was so frustrating when POTS onset and the docs kept saying I was depressed. Umm, NO, I'm not! Been there, done that. THIS is not depression. Nasty, but not depression. Same neurotransmitters seem to keep popping up though so clearly some fault in the system keeps rearing it's head in various ways. Totally unable to tolerate SSRIs or SNRIs other than kind of tolerating a microscopic dose of zoloft. For some reason Wellbutrin and my system seem to do really well together. Sure hope you can find some relief. Sending best wishes and lots of hugs. Stay strong!

I use Wellbutrin which is dopamine/NE and do well with it. While I have components of hyperPOTS, I don't have consistent high BP. For insomnia and sleep phase shifting, I've had good success with LDN and melatonin combined. Took awhile for it to start working but it has helped my sleep tremendously. Have you looked into methylation/B12 issues at all? That is thought to be frequently involved with some of this. Might be another route to explore. Sorry you're struggling with depression. As miserable as POTS symptoms can be, I'd rather deal with them any day of the week rather than go back to the black places of depression I've experienced in the past. Hugs!!!

I think there are quite a few of us with reactive hypoglycemia on here. When I had a glucose tolerance test my blood sugar dropped to 36 and I had nearly all the same symptoms that I had after my TTT where my BP dropped to 30s/20s. It was amazing to me how my body reacted in the aftermath of those 2 events in almost the exact same way, so I think Science Girl is right that it's the interaction of the glucose and the neurotransmitters that is the cause of a lot of our symptoms. Jerry, a standard glucose level on a regular blood test may not tell you much related to this problem. You would need a glucose tolerance test with insulin levels drawn along with it. Doing it later in the day may be helpful too. Only problem is you have to fast before you do it.

For a POTS diagnosis, the standard is 30 BPM rise in HR in the first 10 minutes of standing. Most publications say the HR should rise without the BP dropping during that time for a POTS diagnosis. As others have said POTS is just one form of dysautonomia though so it can get confusing. For example, some of us have both POTS and neurally mediated hypotension or neurocardiogenic syncope. So we may get the initial HR increase without the BP dropping immediately, but then get a big pressure drop a little later. If you see a >20 point change in systolic and >10 point change in diastolic BP that may indicate orthostatic hypotension or NMH/NCS possibly. If you see the top and bottom numbers getting closer than 25% difference, then you have what's called a narrow pulse pressure which is also common in dysautonomia (for example, 100/84 BP would give you a pulse pressure of 16 points, which is less than 25% of 100 therefore considered to be a NPP). Probably best if you can record your findings and then show them to a knowledgeable physician so they can assess the significance of them since the above are just rough ideas of what you could be looking at in general.

I've had improvements with Barral techniques working on the vagus nerve but unfortunately they never lasted more than about 4 days for me. I've heard of other people having more lasting results however and Dr. Rowe encourages his patients to see therapists who use this or similar manual therapy techniques to help with their symptoms. Here's a link to the Barral institute website. http://www.barralinstitute.com/ If you aren't familiar with Dr. Rowe's work, he's one of the pioneers in dysautonomia research who was one of the first to make the connection between people with hypermobility syndrome (aka Ehler's Danlos Hypermobility Type) and dysautonomia and Myalgic Encephalomyolitis/Chronic Fatigue Syndrome (ME/CFS). While he works with pediatric patients a lot of his work has been very helpful to adult patients as well. Here's a link to an article describing one of his most recent publications and the type of physical therapy he suggests for his patients related to this topic. http://www.cortjohnson.org/blog/2014/07/06/strained-neuromuscular-problems-causing-chronic-fatigue-syndrome-me-cfs/

If you are noticing the trembling associated with meals and thinking it might be endocrine, you could try buying a cheap blood sugar monitor at Walmart or Walgreens. I think the monitors can be purchased pretty cheaply OTC. If you buy an off-brand one you'll save money on the test strips which will be where the money is really spent. Might be interesting to just watch your blood sugars for awhile to see what they are doing. While I'm not diabetic, I have noticed a definite relationship between what I eat (especially sugar) and tremors and tachycardia at times. My blood sugars will usually stay within normal ranges, although I do get hypoglycemic, but sometimes the rate of change is pretty fast which can make me feel bad as well. As far as a poorman's TTT, it's generally best to do in the morning as you've been lying down all night. Otherwise, lie down quietly for 30 minutes first. Then stand for 10 minutes by the side of your bed (so you can quickly lie down in case you get symptomatic and need to stop the test). Take your BP and HR at 1 min, 3 min, 5 min, 8 min and 10 min and record them. Do this with as little movement as possible and while you are standing try to avoid any excess movement like wiggling your toes, shifting weight etc. You can do this several different days as most people will have different results on different days. The idea is that with dysautonomia the ANS isn't capable of maintaining normal homeostasis on it's own and therefore has to rely on the muscle pump to keep blood circulating back up to the heart and head. That's why you want to minimize movement while doing the test. Good luck with your neuro appt. Hopefully you'll have a good one, but recognize that not all neuros are created equally and a lot of them don't know anything about ANS issues.

My POTS neuro at Mayo told me that surgery is frequently a trigger for dysautonomia. He said that anesthesia could be a trigger for "full blown neuropathy, including autonomic neuropathy". Mine was triggered by a surgery in 2007 and while I was able to control symptoms with meds at that time, another surgery and post-op infection in 2009 totally blew things up for me. I think I had POTS/dysautonomia after the 2007 surgery and with the infection added in 2009 it moved into ME/CFS when it got the immune system involved as well. I know some people do have some vagus nerve impact after gallbladder surgery though. Have you seen a physical therapist who is skilled in Barral techniques? Might be worth a try to see if you get any relief of symptoms. Best wishes!

Welcome back! Have missed your kind and thoughtful insights these past several years. Sorry to hear you have been brought back down in the trenches again. So hard seeing our kids struggling with health problems. As hard as it is to live with these issues ourselves, I'd much rather do that than watch my kids suffer. My 4 have had way more than their share of major health issues on their path to adulthood so I can relate. Did your son have an illness that triggered an uptick in his symptoms? I always wonder what it is that causes the genes that we've had our entire lives to suddenly switch on and become problematic. I think this whole arena of epigenetics and neuro-immune-endocrine diseases is going to be revolutionary when they finally start getting some serious research money being put toward it. Hang in there. Glad you're back.

Ugh! Sorry Sarah to hear that things continue to be so challenging for you. It's about time for you to get a break I think. I'm guessing that with a calcium that high they have ruled out hyperparathyroidism already? Have you seen an endocrinologist yet? The 2 QSART procedures I had were relatively easy. They place electrodes on your skin that deliver a little stinging sensation for a brief period of time. I know some people have described them as being more painful but for most people I think it's not bad. Can't remember exactly how long it lasts but it's less than 10-15 minutes start to finish I think. The cardio autonomic reflex testing I had done at CC was in 2010 so they may have changed things since then but at that time again it wasn't bad. If I'm remembering right it was things like the valsalva test (blowing against resistance) and paced breathing and one other thing I can't remember right now. At that time they were also doing the "hand in cold water test" but I didn't have to do that one. I don't remember these tests as being horrible. Certainly nothing like the TTT. There weren't IVs or meds given for them. The hemodynamic test had IV meds being pushed if I remember correctly. Between being really ill after the TTT and the 26 vials of blood they took and time that's elapsed since then, I'm afraid I've forgotten a lot of what happened there but overall I don't recall it being too horrible....other than the 2 TTTs (the first one and the one for the catecholamines), With your Hgb of 9 and Hct of 32, hopefully they'll be really judicious in what they draw in the way of labs. Good grief! Good luck with the Topomax. Hope it gives you some relief. For some reason I thought you had tried that previously? Are you seeing a neurologist while you're there? I think Dr. Shields is the one with a lot of POTS knowledge there. Wonder if he might be helpful to get some input from as well. Hang in there! Sending major hugs your way!

Remembered! Always a feeling of success in a day when you can do that. Here is a link to all the videos from the Stanford University Symposium on ME/CFS that they held in March. There is a lot of interesting info in several of them if you are interested in spending some time watching them. Jarred Younger's presentation on Leptin and fatigue and brain inflammation is on video 2 I believe. http://mecfs.stanford.edu/2014SymposiumVideo.html The Zinn's research is also on these videos. They were the ones that documented the EEG changes across the whole frontal cortex of the brain and the delta waves that were occurring during waking. I don't have their actual paper available to me yet. When you go to the site to view the videos, Stanford has a little donation box there to help fund their research if you feel that the information is helpful but it's totally optional. Don't want to have it deter anyone from watching the videos who might find the information helpful.

Rachel- Harvard study http://www.ncbi.nlm.nih.gov/pubmed/21722376 Japanese Study (This has gotten a lot of attention around the world, even though it was small, it apparently was considered to be really well done. A larger study to confirm the findings is underway I believe.) http://www.ncbi.nlm.nih.gov/pubmed/24665088 Stanford study regarding Leptin levels and fatigue http://www.translational-medicine.com/content/11/1/93 There was a video presentation I watched by Younger that explained the role of Leptin in the body and how it could cause inflammation in the brain. Can't find it right now, but I'll try to remember where I saw it and post it later. In it he described a whole list of things that could potentially be used to address the leptin levels although he said none of them should be used for treatment at this time. But it included chinese herbs as well as meds already available on the market so if they could confirm these findings, there should be some treatments available in the not toooooo distant future for at least this subgroup of patients.

There was an EEG study out of Stanford University that was released this spring which showed that in the ME/CFS population there was a greater than 50% reduction in peak alpha waves over the whole frontal cortex of the brain. These are the waves that regulate your sleep/wake states so with that much of a reduction it would indicate that these patients aren't as "awake" as normal people. The study also found that ME/CFS patients had increased delta waves when awake. Usually you only see delta waves in sleep. So that's two strikes against these patients for their brains being alert and working normally when awake. Again, since there is so much crossover between the two populations (POTS and ME/CFS), and some docs are now saying they think it's really just a continuum of the same thing, this may apply to us in varying degrees. There was another study also released at Stanford which showed a direct correlation between Leptin levels and fatigue in ME/CFS patients. Leptin has been known for it's role in weight control but it's a cytokine that has many roles in the immune system. It can apparently interact with microglia in the brain in such a way that it makes them much more prone to causing inflammation inappropriately. Another study, from Japan, found that there is inflammation in the brain in ME/CFS patients that correlated with their subjective complaints of cognitive impairments and this same study showed that microglia were involved with that inflammation. A 600 person study done at Harvard was able to clearly show differences in EEG patterns between ME/CFS patients, controls, depressed patients and patients with general fatigue. So it seems like these all show that there is clearly something up with the brain in this patient population- which many of us fall into. Now they just need to figure out what to do about it and how to treat it.

Thanks Rachel. Nice article! Corina- It looks like this article is from 2012, unless I'm misunderstanding you and you're asking about the date for one of the cited reference articles.

Kitt- I have skimmed the paper but didn't have time to read it thoroughly like I want to. Brain fog has been bad so nothing much is making sense these days. I will keep it to read later though. I have seen some of his YouTube videos in the past. I take the liquid cromolyn and use 1 vial 4x a day. It's prescribed for 2 vials 4x a day but I was too dumb to realize that when I first got the prescription and I did ok with the dose I was taking so I've just stayed with that. When I tried going up, I had more side effects so figured I'd stay with where I was being successful. I get mine thru our mail order pharmacy so I get 6 months worth at a time.

Definitely! I noticed a correlation between this symptom and the weather when I first became ill and it continues even now 5 years later. My kids claim I'm a better weather barometer than anything they find online.

Blue- it's helped with my IBS symptoms. When I had a colonscopy recently they tested the biopsy samples for mast cells and the pathology report came back saying all the samples contained higher than normal numbers of mast cells. It may be helping with other things as well but I'm on so many different things it's hard to say what's doing what any more. Kitt- I had my IgE tested 5 years ago when I first became ill and it was very elevated. It was tested last week and it was normal.