Chaos

http://circ.ahajournals.org/content/127/23/2336.full Try again with the link to the article

http://circ.ahajournals.org/content/127/23/2336.full%C2'> This article that Rama posted recently discusses a bit about this topic in the section on hypovolemia and POTS. Interesting that the article is discussing low aldosterone and renin levels (in standing) with high angiotensin ll levels. That doesn't seem to fit with your particular pattern at the moment but wonder if they drew your blood while standing.

Tell me about it. Now all 4 of my kids have decided rock climbing is just great. Double ugh! Like I needed more things to worry about......

I think one of the reasons the research hasn't been done is because they didn't recognize how many other problems were associated with hypermobility until recently. I think Peter Rowe was one of the first to make the connection between EDS/hypermobility and the autonomic issues so many of his patients were having and that was just in the last decade or so. Perhaps in the UK there are more advances in research being made, but here in the US, the vast majority of schools are still teaching that hypermobility just means patients have more range of motion than usual and have no clue as to all the other issues that go along with it. Elizabeth- you may be right. Personally I've been hypermobile my whole life but only developed POTS in 2007.

Hey Kris, No he hasn't mentioned any side effects. Haven't observed any either. Just know that within a week of starting it, we were able to see almost daily improvements in his symptoms and he started getting back to being able to do the things he has always liked to do. He literally had been looking like a 90 y/o man creeping around, not able to get out of bed, roll over, turn his head, use his right arm, put weight on his leg, etc. without excruciating pain (and he has a high pain tolerance). Within a month he was able to play basketball again. He still has some pain post exertion if he does impact activities so now he has taken up rock climbing. Ugh!

Hi Ginger! Good to see you back here again, although I'm sorry to hear you're still having problems. Have missed seeing you around. When I was talking to my doc recently he had suggested Lyrica for pain issues. I said I hadn't tolerated Cymbalta and he said that Lyrica was different enough chemically that I might be ok with it. Haven't tried it yet as he also suggested trying some magnesium and curcumin first. Have had some success with those two supplements decreasing some of my pain issues a bit. I have a friend with fibro who is treated with low dose amitriptyline and has had good success with that decreasing her body aches. Obviously these are just things you might want to discuss with your doctor to see if they might be helpful in your situation.

My son had an acute onset of inflammatory arthritis/ankylosing spondylitis last year. Humira has been a miracle drug for him. I hate all the possible side effects but seeing him looking like a 90 y/o man barely able to move and in severe pain wasn't so great either.

I'm curious how you are able to pinpoint them to your BP fluctuations? Personally my BP moves around so much that it would be hard for me to say for sure that my migraines are related to that. So unfortunately I can't help you with any experience with that aspect of migraines. Have you noticed if they are triggered at all by weather changes? Sometimes mine will be set off the day before a weather system comes thru. Would your BP changes be more reflective of variable hydration perhaps and not drinking as much when you are really busy? I've had that be a trigger for mine as well. Certainly not sleeping will be a big trigger for mine. Then, sometimes I wonder if it isn't that something is just "off" in the brain and then everything triggers them. I mean, when I first got sick, for a few years, I was having about 20 a month. It seemed like everything was triggering them and "nothing" was triggering them. Now, I'm on topirimate (topomax) at a low dose and rarely have one despite all the same possible triggers. Migraines are miserable. You have my utmost sympathy! Glad to hear you have been doing so well the past 4 years.

My lowest pulse pressure has been 8. It usually only gets this low when I'm in the midst of a major relapse in symptoms. Narrow pulse pressures are not uncommon in dysautonomia patients I've been told by my POTS specialist.

Whenever I have a major flare or relapse of symptoms I have weight loss that accompanies it. Have lost as much as 17-20 lbs but not as much as 30. Usually I lose my appetite and have early satiety so I can't eat much more than a few bites so that probably accounts for it in my case...along with the nausea and the "revved up" metabolism that comes with the tachy etc.

Rachel- Very exciting to have another course of action open to you to pursue. Always hopeful! To put info in your "signature" (like the supplements etc), click on your user name in the upper right hand corner, click on my settings and then click on signature on the left hand side. I've been advised to use the acetyl L carnitine and the CoQ 10. Have tolerated it ok in the past. Haven't used the other one but I think I remember it being discussed in the past so you may be able to find prior discussions about it.

Interesting. Thanks for posting. I had heard a couple other docs mention this in various videos but had forgotten it. Thanks for the reminder. Nice to hear someone's personal experience of it being helpful.

Another source you might look at is Martin Pall's NO/ONOO theory on Oxidative Stress. His research is mostly around CFS and fibromyalgia but the overlaps with our stuff is pretty significant.

This is really interesting. I also have low ferratin (although no docs will say that since the lab calls them "normal" at 12). How are your B12 and MCV levels? I read recently that "iron can drive bacterial virulence" so maybe that's why your doc doesn't want to force a faster supplementation? The whole NO thing is really fascinating. I wonder if the low ferratin is actually just a symptom and not the cause. I think there may be other things that are the problem and the low ferratin is just another indicator of the fact that we're not dealing with NO well. How is your LDL? Have you looked into methylation/MTHFR at all?

As others have said, lists help, although even if it's on a list, I will frequently forget to ask it. It helps if I've told my husband (or other family member accompanying me) about things I especially want to ask about as they will help me remember. I also like to record the visit. Most docs have been ok with this if they are specialists in this disorder as they know about the foggy brain issue. I always ask before doing so. Once I'm in their office, I will frequently lie down on the table to help get blood back into my brain so I feel a little more cognitively intact when they come in. It disconcerts a lot of them to see me lying down when they come in. Strikes me as funny how some of them can't handle having me lie down and want me sitting up to talk. Hello! This is how i have to spend much of my life. Maybe they need to see this more often to help them face the reality we live with all the time.

Frustrating indeed. Were you titrating up on it at all or how were you dosing it? I was on 30 mg 3x/day and was supposed to go up to 60 mg 3x/day. Did ok on the 30mg but when I tried to increase was when things went bad and then even when I went back down, it just wasn't doing it for me. HR was staying in the low 60's even when I walk up stairs and BP was way too low for that low of a HR.

If my brain fog is letting me remember right I think a lot of ME/CFS patients are found to have metabolic issues and I think they tend to be more acidic frequently. I think that goes along with their tendency to have lower anaerobic thresholds which causes them to produce more lactate as a result of increased anaerobic metabolism. I know Julia Newton's group in England has released some really interesting studies linking a lot of these things together, including some of the autonomic issues we have.

I have been experimenting with mestonin for a couple months now. Have also been doing several other things at the same time so hard to say which is mestonin and which is the other stuff, but like you, I'm stopping the mestonin now to see what happens. Thought it helped some things, but in combo with midodrine and beta blocker it kept my HR so low it was making me feel really bad. Couldn't find a good balance between them all.

I had that same reaction to the florinef. Also had headaches/migraines with it. Apparently it's a "rare" reaction to it, but it can happen. Was very relieved when I finally got off it, especially as I also gained weight on it.

Hang in there. It's often a lot of trial and error for all of us as we attempt to find a med regimen that works. While our docs (who aren't POTS specialists) frequently act like we are freaks of nature to have such odd reactions to meds, those of us on here know all too well how weird our reactions can be. You definitely aren't alone. Going thru a lot of different meds is not unusual for us. Personally my primary care doc has told me he never expects me to have a "usual" reaction to a med. Says he knows to look first under the "rare" list for my drug reactions.

I had to start at a lower dose of the Nadalol than prescribed for a few weeks and then work up to the full amount- which is still a low dose. Sorry, can't remember exactly how long it took but I remember it wasn't an "immediate relief" like the propanalol had been.

Do you have an out-patient infusion center nearby that might be able to do it? In order to qualify for homecare services you usually have to be "homebound" which means you aren't leaving the house for any reason other than an occasional doctor's appt. That might be one reason they are denying it. Just a thought. If you were admitted to the hospital (not just the ER) and then they wrote for the homecare after you got out, it might be approved, but not sure for how long. And, it is all dependent on each insurance co. I have to go to an infusion center to get my IV saline on a regular basis.

There have been some studies that have shown a paradoxical reaction in some POTS patients where they have vasoconstriction in the cerebral vasculature even when their BP is low. Typically in a "normal" person the body does everything it can to make sure it keeps blood in the brain, but for some reason, some POTS patients have an abnormal pattern of cerebral vasoconstriction in situations where normally people wouldn't. Some people find that their brain fog is less when lying down in these situations.

The first link didn't take so here it is again. http://www.ncbi.nlm.nih.gov/pubmed/16501663

There are more and more studies showing a link between cytokines (inflammation producing) and brain fog as well as depression etc. Here are a couple links. and http://www.psychologytoday.com/blog/health-matters/200903/depression-inflammation-immunity-and-infection I think spec scans are also showing evidence of hypo-perfusion in a lot of ME/ CFS patients and given the overlaps in patient populations it may be relevant in our situation as well.