Chaos

Macca- I'm really curious to read the article. Thanks for posting it!

I have heard a couple different theories on this. One given to me by an ex-ICU/CCU nurse was that the IV fluid gets into different "spaces" (vascular beds?) than the oral fluids do. Argh, there is another word that I am forgetting there that I want to use but can't think of now. The second theory has to do with the whole Renin/Angiotensin/Aldosterone cycle that they have found to be "off" in some POTS patients whereby we don't retain fluids normally out of the kidney. That explains why many of us tend to run a litre or so low on fluids. Not sure if it's part of the same theory or a third theory that the autonomic neuropathy some of us have affects the kidneys' ability to retain fluids as well. Therefore putting fluids directly into the vascular spaces tends to work better for some folks. It is frustrating when you drink so much and don't feel like you have much to show for it. I know I always feel kind of silly going in for IV's and always want to explain to the nurses that I'm really not just lazy or not drinking.

Had this last winter with pneumonia, although I was having more trouble with low BPs but definitely all the other POTS symptoms were much worse. When I called my POTS neuro they seemed to think it was very normal to have the symptoms exacerbated with illness. Hope you feel better soon!

MedicGirl- When I did the two day exercise testing and found the (extremely low) point at which I hit anaerobic metabolism, the woman running the tests was saying that your anaerobic threshold could be even lower if you were ill or had an acute infection or had some other type of physical/emotional/mental stress (or combo of all three) affecting your system. I would think you would certainly be in this situation with your health as it is right now- unfortunately. Wish I had some suggestions to help improve it but other than drinking water, I haven't found much in the literature.

My CRP is usually normal but recently tested elevated when I was having a big flare of pain. My rheumy had prescribed plaquenil last spring as "a shot in the dark" med when those markers were all normal still. Haven't tried it yet but am almost tempted to now. Haven't been able to find anyone willing to test the C4a yet. Thanks for the info!

MedicGirl- Is it possibly a side effect from your chemo? I know ME/CFS patients have been found to go into anaerobic metabolism at a very early point in activity. One of the by-products of anaerobic metabolism is lactate which is thought to be responsible for the muscle aches/burning that a lot of ME/CFS patients get. I wonder if the "stress" of the chemo you are getting is causing this to happen in your body at an earlier point than usual? There haven't been studies done on POTS patients (that I'm aware of at least) to document this same phenomena but given the overlaps between the two populations, it could apply in your situation. I know when I have an acute illness and am in a bad POTS flare, I will have this kind of muscle burning in my arms and legs from something as benign as trying to roll over or walk across the bedroom. Other than rest I haven't figured out anything that helps, unfortunately. Still looking though. Katybug- I think I remember you saying your immunologist ordered the C4a levels. Do you routinely have an elevated ANA, CPR or SED rate?

I was also thinking an osteopath might be helpful.

Hopefully this link to Julian Stewart's study works. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1796865/ He has done several studies regarding CO2 levels (hypocapnia/hypercapnia) and hypoperfusion related to orthostatic intolerance in CFS patients.

I haven't had nitro on any of the 6 TTTs I've been given so not familiar with what they are looking for after it's administered. I know when you have that type of crash in BP without nitro a person will likely get an NMH or NCS diagnosis along with a POTS diagnosis. Not sure if that's the case when it's triggered by nitro. Do you suspect that you might have any kind of connective tissue disorder underlying this? Any history of freaking people out in school with what you could do with your joints? Do you form wide scars that look like papyrus paper? Asking because my POTS neuro has told me that he's learned over the years of treating his POTS patients that the ones who have hypermobility issues underlying their POTS frequently don't do well with clonidine. Just a thought in case you have that in your medical history along with the POTSie type symptoms. I think most docs are realizing that the terminology currently used for the subgroups of POTS is probably not very helpful. There seem to be quite a few of us who have characteristics that go between the various "types". At my last visit my POTS doc just threw up his hands and said he had no idea what type of POTS I have because I have components of all types but don't fit neatly into any one category. Don't feel alone in not fitting into any one set group. I think it's not that uncommon actually. Makes finding meds that work all the more interesting. For most of us it's a trial and error thing even when you supposedly know what type of POTS you have.

Interesting clip. Wonder how they were able to isolate that the lack of blood flow was from gluten and not from something like POTS? Although maybe the argument would be that POTS was from the gluten sensitivity. Interesting nonetheless. Thanks for posting.

Well, that didn't work. Not sure why the links didn't get included in my post again. I'll try again here..... Julian Stewart's study: http://www.dynamic-med.com/content/6/1/2 Julia Newton's study: http://www.ncbi.nlm.nih.gov/pubmed/24179772

This is a link to an article that describes a possible mechanism whereby pH is disturbed in the blood, thereby causing problems with cerebral blood flow and thus CO2 imbalance. If you pull up the full article it has other articles referenced that also describe similar issues. While the studies are about CFS patients they are investigating the orthostatic intolerance (POTS/NMH) issues that those patients have so these studies are probably relevant to us. This is a link to one of Julian Stewart's articles on hypocapnia. Again, targeted toward the CFS patient population but looking at the ones with orthostatic intolerance issues. From this one you can find more links as well. This is an older study but he's done more recent ones along the same lines. I'll see if I can find one....

Really hoping they come thru with some ideas for you and Tyler. You all have been thru the wringer!!

Sue- I was told something very similar when I had the same tests....basically the doc said just because these tests came back negative doesn't mean it's not auto-immune, just means it might be an auto-immune we don't have a marker for yet. He has been willing to try a couple rounds of steroid bursts for me but that's about it so far.

Do you live near Mayo? Since you are referring to a 40 point increase I'm assuming you're under 21. Have you checked into the other places that work with younger patients?

SO SO sorry to hear that this was the result of your appt. SO not what you needed, especially at this point in time. I am really glad to hear that you went straight to the supervisor to report the bad behavior though. Good for you! Thanks for helping all of us out by making these unprofessional people accountable for their actions. Until more people do that the situation is never going to change. Not that I think patients should be nasty or aggressive toward providers. BUT, if the providers treat the patients badly, then I definitely think it needs to be challenged and they need to be called on it. Sorry...going off on my own rant here. Sarah- I have had significant brain fog in the past before and after being on topomax. I think much of it has been improved since being on anti-virals. When I started the topomax I titrated up really slowly. Got up to the dose the doc wanted but felt like it was too much in the morning so backed off a bit on that dose (with his approval) and have been fine with it.

It may be helpful to send some of your personal readings from home monitoring (like the low BPs and high HRs) along with the TTT results. Also you might want to include a letter briefly describing your symptoms as well when you send in your records. A referral from the cardiologist who thinks you have an autonomic dysfunction may be helpful also. Good luck!

I feel like that and I'm on midodrine, but I was having that before I was on Midodrine as well so for me at least I think it's more of the dysautonomia than it is the meds.

I think usually they say it's a sustained increase, but it doesn't sound like a typical TTT from what you are describing. At least I haven't heard of anyone having it done 3 times in a row like that. The other thing to keep in mind is that in order to be diagnosed you need to have the HR change but you ALSO need to have clinical symptoms. Sounds like you have plenty of those. I've heard of TTTs being 10 minutes or 45 minutes but not 10 minutes, done 3 times in a row. By doing an extended version (45 minutes) it allows them to look for what's called delayed accentuated tachycardia which is a HR increase which may occur beyond the first 10 minutes which is also abnormal. It may also allow them to diagnose NMH or NCS if you have a vaso-depressor and/or vaso-vagal reaction beyond the 10 minute mark. Hard to say what your doc will say you have as it doesn't sound like they are particularly familiar with how to diagnose this disorder. However, it is good to have it done and then you can get the full records (not just the report) so you can send them along if you try to get in to a specialty clinic to see someone who knows more about the problem. The other thing to keep in mind is that our symptoms tend to vary from day to day so just because you might not have a "technically" positive result today, it doesn't mean you don't have the disorder. A doctor more familiar with the disorder will know that.

Me too! Have been thinking of you a lot and hoping we'd hear from you. Praying everything is going ok.

For me it depends on what triggers the flare and what kind of symptoms I'm having during the flare. My flares can last from a couple days to several months. As far as what helps, I try to double check that I'm still keeping up fluids, salt, getting enough rest, etc. IV saline is helpful getting out of flares at times when my BP and HR are more unstable but not as helpful when fatigue and weakness are the primary symptoms that are bothersome. I try to balance resting with being up and moving gently- enough to avoid the dreaded deconditioning but not too much as excessive activity is one of my worst triggers for flaring my symptoms up. Hope you get out this flare quickly.

If your GP won't do it, do you have a cardiologist or neurologist or any other specialist who might know a little more about POTS who would be willing to write the order? Or could the doctor who diagnosed your POTS maybe write the order for you? Personally I had my specialist doctor from out of state write the orders but then the local infusion center wouldn't accept them so I had to get my local cardiologist to write the order. He was willing to do it, especially after seeing the orders written by a more experienced doc from elsewhere.

I keep watching Julian Stewarts research in NY along with Julia Newton's group in England. They seem to be figuring out some of the connections with the CO2/O2 thing and it's connection to the autonomic nervous system. They are also linking it to cerebral hypo-perfusion which may be why we feel like we're becoming brain damaged- whether or not it shows up on MRIs.

A GP who will do what you ask can be quite helpful. Beats the heck out of docs like the endo I saw today who just rolls his eyes when I say something. How are you doing today? You might want to keep a record for a week or so and see if you are still having the big shifts in BP over time. I know my POTS neuro insists on making any med changes slowly and one at a time. He also says you need to stick with things for awhile as the ANS takes a long time to sort things out once a change is made. Best wishes!

Sorry Becia! Such a major bummer when you go to a new doc with the hope that MAYBE this time they'll actually be helpful and they aren't. But then when they pile on by adding rude and condescending on top of it....Ugh! Having other people there helps sometimes but I know when I went to see a local neuro once I even took my sister who is a nurse practitioner and he was still terrible and behaved much like you are describing. Ironic that so many docs want to blame our conditions on depression when the only time I'm even mildly "depressed" is after leaving one of their appointments! Doubly ironic that we get labeled as anxious when it's a perfectly normal reaction to going to see doctors after the way we've been treated time and time again. Hang in there. The fact that your MRI is normal and the EEG is mostly normal may actually be good news. May feed more into the theory that this is related to your dysautonomia rather than a true seizure disorder. Just because the neuro doesn't know what the problem is doesn't mean that there isn't a problem. Just that HE doesn't have the answer you need. Keep looking. Hopefully you'll find a doc with better answers in the near future. The old adage about "you have to kiss a lot of frogs before you find a prince" holds out for doctors as well.