Chaos

I've been on beta blockers for several years. (propanalol which was changed to nadalol this Jan.) I just started mestonin 30 mg 3x a day 2 weeks ago. I'm also on midodrine. Jury is still out on the mestonin. Have been having pretty intense nausea on it, which isn't one of the usual side-effects. Was supposed to go up to 60 mg 3x a day after 1 week, but only got up to the full starting dose a few days ago, so am going to stay here for awhile before increasing. Haven't had bradycardia, but still having some tachycardia, especially in the mornings or before all the meds kick in. I was hoping it would help with the weakness that continues to be one of my most limiting issues. So far it hasn't.

We used tilt tables in physical therapy to get post-op patients up in the distant past. They always thought they were going back beyond horizontal when we put them back down, so I think it's normal for just about everyone, not just POTS patients.

Here's a video of tremors similar to what I've experienced in the past. Also kind of the breathing issues I've experienced. I think when you are describing the tingling/numb and "unreal" feeling, it's because of the changes in your breathing that are in effect making you hyperventilate for some reason. I think there is something physiological that happens that causes our breathing to change and then we get these sensations as a results. Because of the change in CO2 levels you get the resulting numbness/tingling and unreal feelings. If you talk to the people in the ER, they'll say you are hyperventilating (probably due to anxiety) and blame it on that. I don't think that's the case. From my experience, I personally think there is something that happens at a biochemical level first that leads to the change in breathing as a compensatory mechanism and thus the sensations that occur naturally from the change in O2/CO@ levels.

Thanks for the reminder!

I think Vanderbilt did a study comparing their POTS and POTS/ME-CFS patients and found that nearly all their POTS patients met criteria for ME/CFS as well. They said maybe it was because they were a tertiary care center and seeing "the sickest" POTS patients but it was definitely striking that there were so many correlations between the two. I know the autonomic nervous system is a huge area of interest for study for people doing research on ME/CFS right now as they are realizing how often it is adversely affected in people with ME/CFS. There are an awful lot of overlapping symptoms and sure seems like it could all be points along the same spectrum of illness. I know the immunologist I see calls it Neuro-Immune-Endocrine Disease rather than CFS as he feels it's a much more accurate description of all the systems affected by our disease(s).

Wonder if this doesn't apply to a lot of us even without a fibromyalgia diagnosis- especially if you have pain that migrates. So many of us have temperature regulation problems and have issues with cold hands/feet etc which would seem to indicate that the vascular system isn't working well (aside from the obvious blood pooling). It gets chalked off to "dysautonomica" but wonder if it's not specifically related to this AV shunt mechanism aspect of the autonomic system? I can't remember the last time I recorded a "normal" temperature on a thermometer personally. Thanks for posting.

Wonder if you might also have other infections going on that you weren't aware of and the antibiotics are doing double duty? Have you seen a good immunologist to have a thorough work up of your immune system? There is a theory that a lot of us have immune system issues as well, so we run high viral titers and/or heavy bacterial loads (eg.mycoplasma pneumoia) all the time because our immune systems can't take them out. Finding a good immunologist with knowledge in this area is a challenge but may be worth your while.

Had biopsy, DNA test and one other test all of which were negative for gluten problems. Apparently you can have varying levels of gluten problems however from celiac (which they can test for) down to gluten sensitivity (which I don't think they can test for at least in a regular doc's office).

I can relate to several parts of your post. My POTS symptoms started initially after a hysterectomy. A beta blocker was enough at that time to get me back to work but I wasn't ever back to my pre-op condition. Eighteen months later I had another surgery, followed by a post-op infection which left me with the POTS symptoms plus more neuro symptoms (weakness, paresthesias, Raynauds, never ending fatigue, balance loss, temperature regulation problems, etc etc.) Like you, I have had orthostatic hypotension most of my life, but it never was much of an issue. (So, everything goes black when I stand up. Just stop and wait and it comes back in a minute,right?) Likewise, migraines and reactive hypoglycemia. However, those all became much bigger issues when all this other stuff came up. My daughter had pulmonary emboli last year and has also been recently diagnosed with POTS. I think she actually started exhibiting symptoms 6 years ago when she had major surgery. We have HR challenges when we go up stairs together to see who has the faster HR at the top. According to my POTS neuro, anesthesia is frequently a trigger for this and is known to cause "full blown neuropathy". I've been diagnosed with low blood volume, EDS, autonomic neuropathy, as well as "most likely an autoimmune" source for my POTS. I seem to cover most types. Sorry you're having to deal with this as well. I second MomtoGuliana's idea to check into Sjogren's syndrome. It can mimic a lot of dysautonomia symptoms. Don't feel like a hypochondriac. You're being your own advocate and that's frankly the ONLY way you are going to get any help with this condition. Hang in there!

There is another form of dysautonomia called convulsive syncope which is frequently confused with epilepsy. Apparently the specialty clinics are seeing a big upsurge in referrals for these types of patients. So sorry you are having yet more symptoms to cope with. Hang in there!

I have done saline infusions as needed but found them so helpful that I was doing them 3x a week regularly thru the summer. I think if you don't do a port or a PICC line the risks are pretty minimal. I went to an infusion center for them. For me having the saline warmed and infused at a slower rate (1 liter over 2 hours) helped me retain the fluids better. When they went in fast, they came out faster.

I've had a similar issue with stomach problems that always seem to occur after dinner when they occur. Have not been able to tie it to any particular foods/ meds/ seasons/ or anything else. Have also had episodes where I've lost significant amounts of weight like this but then also episodes where I've gained it back when it didn't seem like I was really changing much of anything about the way I was eating or exercising. Glad you are getting things checked out with your doctor to make sure it's not something else before you just pass it off as being due to the dysautonomia.

I want to go! Problem with it being in Hawaii is a lot of docs will go for the trip and not bother going to the classes. Hopefully our "good" ones will be there learning all they can though. Maybe we could offer to go and take notes for them. LOL

If I'm not mistaken, crossing your legs (or in your case sitting cross legged) is a "counter maneuver" that they teach people to do to increase blood pressure when they feel like they might pass out. So if you were checking it when you were sitting like that, I wonder if that might have had something to do with the higher readings?

Well at least you keep changing things up. Last we heard I think it was your other end that was keeping you occupied and miserable. DC to Dallas...hmmm...that must be some sort of culture shock. At least you're close to Dr. Levine there so you can go get set up on an exercise program with him. Maybe that will solve all your autoimmune problems. You can wear an eye patch while you row and look like a pirate. Ahoy matey! Sorry to hear about your struggles. Can't help you with the ON. My son had pars planitis which is another auto immune inflammation of the retina but not the optic nerve. Glad you have someone there to support you thru all the joys that dysautonomia brings! Hang in there. Good to "see" you again. Oh BTW knock-knock.......(never mind, it's not that good.)

Obviously standing isn't the best thing for us, but recently doing a tour of a computer company with a family member and he was telling us about how they are now implementing "treadmill desks". Apparently they let you walk at a slow speed (1 mph) while you work. Might be enough to keep the muscle pump working whereas just standing wouldn't? Interesting article. Thanks for sharing.

I frequently have a reaction to simple sugars but it's usually a faster onset than you are describing. It's usually within minutes that I'm having palpitations and tachycardia etc. Ironically when I'm in a relapse I find I frequently crave more carbs and simple sugars which don't tempt me at all usually.

Suthrngal- I saw an immunologist who specializes in viruses etc. He did extensive testing and based on my results he decided which anti-viral would be most appropriate to try. Have you had success treating your MTHFR with supplements? Has it provided any symptom relief?

I think this is pretty common for anyone who is sick. I saw the same thing happen when my mom had terminal cancer so I don't think it's limited just to those of us with chronic diseases. Just harder on our friends and family who stick by us as they have no end in sight. LOL I also saw it from "the other side of the bed" when I worked in hospitals and home healthcare for 30 years. Personally I think part of it comes from people not wanting to admit to their own mortality or having to acknowledge that they too might be susceptible to having something like this happen to them. People like having a sense that they are "in control". (Didn't we all feel like that once upon a time before we were so brutally shown that we weren't?) By having to associate with those of us who have experienced these unexplained, untreatable conditions it makes them confront the fact that we really don't have a lot of control over what happens in our lives. Most people don't want to face that. I know I was always one who was active, exercised, did yoga, ate right, didn't smoke, did all the "right things" to stay healthy and look where I am! Who wants to hang around with someone that shows them that all their hard work doesn't necessarily pay off in good health? I also think part of it comes from being an impatient and shallow society as a whole. We don't have time for infants, the elderly, the sick, the mentally disabled etc. We focus only on the young, active, healthy and glamorous. If you don't fit that criteria we seem to think you should be pushed aside and left behind, left in institutions for "others" to care for, kept out of sight so you don't offend the young, active, healthy and glamorous. Like you, I've lost many friends mainly because the things we had in common I'm no longer able to do. That may not be so odd. As I look back over my life, I've had many friends come and go based on whatever activities I was involved in at the time. If you don't interact with people on a regular basis you tend to lose touch and if you no longer have things in common you don't have a lot to discuss. I am however truly grateful for those true friends who have stood by me and continue to hang in there even though I'm not the person I was when I first got to know them.

I'll try again as the system dropped my links I had put in. This is the link to the protocol I'm using http://forums.phoenixrising.me/index.php?threads/b-12-the-hidden-story.142/ This is the link to the modifications to the protocol that have made since it was first published in 2009 http://howirecovered.com/active-b12-therapy-faq/#changed Hopefully they come thru this time.

badhbt- In early Sept. my doc told me to take 15mg of l-methylfolate which he's having me order on line. I did notice some improvement very quickly but I'm my own worst enemy because every day I felt better I overdid things and ended up back in bed. In mid Sept. he had started me on another med which was really a bad idea and wiped me out for a couple weeks. Now that is out of my system and I'm heading back upward again. I'm also just starting to play around with this protocol http://forums.phoenixrising.me/index.php?threads/b-12-the-hidden-story.142/%C2'> I have avoided reading all this methylation stuff because it was too overwhelming and I was too brain foggy, but now that I know I actually have the gene mutation, the more I read about it,the more it makes sense and the more it seems like it may provide some relief of symptoms at least. I'll let you know. (Having taken the antivirals and having that help clear a lot of the brain fog helped too so I can finally understand a little bit more of what I'm reading. It's still overwhelming though! )

Good luck with the midodrine. I take 7.5 mg 2-3 x a day along with nadalol to keep my HR down and BP up. I didn't really think the midodrine kept the HR down much but when I tried going off it a couple months ago, I definitely found out how much it helps. While I've had some episodes of bradycardia, it's not been long lasting enough to be too worrisome.

Hanice- Interesting that you have the CC mutation on 1298. (That's the same one I have.) That apparently decreases your ability to produce B4 by 70%. B4 is a critical ingredient in the Krebs cycle which is used to produce energy in the mitochondria of your cells in order for you to function. This is a gross simplification based on what I've been reading over the last several weeks so you should probably look into it on your own and don't take my word for it. My understanding is that it's best, if you choose to supplement, to use methyl folate and methyl B12 as those of us with this mutation can't utilize the more standard form of B12 or folic acid. It would appear however that you have a doctor who has ordered a big group of tests so I am assuming he/she would be advising you how best to proceed with the information they've gained from the testing.

http://www.fda.gov/downloads/ForIndustry/UserFees/PrescriptionDrugUserFee/UCM368806.pdf In April 2013, the FDA held a stakeholders meeting with patients, physicians, and researchers from the ME/CFS community in an attempt to jump start drug development to treat this disease. Here is the link to their report on the synopsis of their findings regarding patient symptoms and the impact the disease has on everyday life. Reading through it, it certainly sounds to me an awful lot like what many of us complain about on a daily basis. If in fact POTS and ME/CFS are just points on the same spectrum of neuro-immune-endocrine disorders then we aren't quite as few in numbers as we've been lead to believe and maybe will find some hope in the future with the research that is currently going on. It would be nice if the researchers realized they may all be climbing on the same elephant however and could combine their resources. Wondering if other people recognize themselves in the report?

http://howirecovered.com/active-b12-therapy-faq/ Try again here. Not sure why so many of my links keep getting dropped by the system when I try to attach them these days. Sorry !