Chaos

Raisin- Here is a link to a synopsis article that has links to the specific studies in it.

http://www.cortjohnson.org/blog/2014/07/17/mystery-longer-big-picture-emerging-chronic-fatigue-syndrome-dr-bateman-talks/

While the article is targeted for the ME/CFS population, as you scroll thru it you will see that POTS is directly addressed near the bottom. Also addressed are viral onset, hormonal fluctuations impacting the illness, cognitive issues, immune and endocrine system problems, sleep problems, autoimmunity as a possible cause, and specific EEG findings that could "produce pain and fatigue, poor coordination and balance, slowed and more difficult movement, hypersensitivity and poor working memory." To me it sounds an awful lot like what many of us with POTS describe as our symptoms.

If you have degeneration in the lumbar spine, that may be part of the problem as well. I have severe degenerative disc disease at a couple levels in my lumbar spine from a spondylolisthesis and I know I have pretty severe pain after trying to stand for awhile, especially on a hard kitchen floor.

As Katy said, core stabilization helps. When I was still able to teach yoga, even with the degenerative disc disease, my back and neck felt so good I forgot I even had a history of back problems. Since I developed POTS etc and have such severe PEM with any exercise I try to do it's a vicious cycle of trying to keep my core strong without flaring everything else up so badly I end up stuck in bed.

Hi and welcome.

Here is a link to a prior thread with an article link about a possible connection between ANS dysfunction and fibromyalgia.

Like others have said, if your rheumatologist isn't helping you, you might want to shop around for another one. Especially older ones tend to still be of the mind set that it's psychological or there's "nothing really going on" that they can do to help. While there aren't any cures, there are some treatments that can be helpful.

For example, here's a link to an article that was published in the Journal of Arthritis and Rheumatology on the use of LDN in Fibromyalgia that was conducted by a doctor at Stanford University. Too bad so many rheumatologists don't bother to stay up to date and read their own publications.

http://onlinelibrary.wiley.com/doi/10.1002/art.37734/abstract

Unfortunately we are in the position of having diseases that require us to be our own advocates and do most of the research for ourselves to find our own best treatments. Then we take them to the docs who are willing to be partners with us and help us find things that work. Docs who don't fit in that category are best left behind.

Glad you found us and hope we can be a support to you.

Has been helpful for my GI symptoms.

I have this as well. Some days I find I have to walk with a very wide base of support and keep reminding myself to bend my knees appropriately as I move, and other days I feel like I'm very uncoordinated in my gait pattern. As Corina said, it feels like the automatic button has been switched off.

There is more and more research coming out showing inflammation occurring in the brain of people with our compilation of symptoms so I wonder if this is part of why we have problems like this and loss of balance and cognitive issues etc.

Your hips might be referring pain into the areas you are describing. Given the amount of arthritis you described in your other post about your hips, that might be the source of some of your pain. Or, it may be that you are having to change your posture or your patterns of movement due to the hip arthritis and that is causing muscle and fascia pain due to these new and abnormal patterns you are developing, most likely unconsciously.

Just a couple of thoughts as to what might be contributing to the pain after you're up for a period of time.

This group is doing some great ANS research. Here's a link to a YouTube video that Julia Newton (from the above research group) did which explains why some of us might feel better with exercise and some of us don't.

While it's labeled for ME patients, her group's focus is largely on understanding the connection between ANS abnormalities and ME so it's very relevant to us. If you check out the link on YouTube you'll see that there are several other ones she's done there as well which are also interesting.

I think they're in phase 2 or 3 and results are expected out pretty soon.

I just got a prescription for celebrex to see if it's easier on my stomach than naproxyn so I'm going to be curious to watch now and see if I notice any change in my POTS symptoms when I switch over to it. Thanks for the head's up on that.

Not completely related but I know there are some drug studies going on now testing the combination of celebrex and antivirals in fibromyalgia patients. The ME/CFS community is watching it closely given how many overlapping patients there are between groups and given how many ME/CFS patients have POTS, it may certainly have some application to this group as well.

As far as the migraine- immune system relationship....I recently had an insight into this from personal experience that has me wondering even more what the connection is.

Since developing POTS, I was having around 20 migraines a month. I eventually started on topomax which definitely decreased the intensity of them but only dropped the number down to about 14-16 a month.

After further immune testing I then started antivirals. After being on them for several months, I noticed I went for about 6-8 months without a migraine at all. I didn't think it was related to the antivirals until my doc had me stop the antivirals in May and within a week, I was back to having near daily migraines. Stayed off them for a month and then restarted them and after about a week, the headaches started decreasing again.

I run really high titers to many different viruses including EBV (both IgG and IgM) even though I don't recall ever having mono.

There was someone else on here awhile back who was undergoing treatment for breast cancer but I keep wracking my brain for their name and can't come up with it. Was hoping they'd chime in.....

Best wishes on your surgery. Think it's tomorrow?

Praying that all goes well and you have the best possible outcome!!

Mega-gentle Hugs!

So sorry to hear this Poohbear!! What a major drag.

Don't have any advice for you but am sending you major big HUGS and prayers!!

Both my daughter and I have been officially diagnosed. I suspect 2 of my 4 siblings and a couple of nieces have it as well.

My POTS doc says it tends to run in families but he didn't know of any particular studies showing it other than the ones related to a particular family with the NET gene abnormality and the ones with the specific type of inherited familial dysautonomia.

Very interesting how he tied in the CO2 levels with the cerebral vasoconstricition.

Really glad you found some answers. He sounds like a very thorough and thoughtful doc.

http://www.deepdyve.com/lp/elsevier/postural-tachycardia-syndrome-in-children-and-adolescents-2u5KusIvIN

Here is a review article from 2013 that also mentions hyperadrenergic response of increased blood pressure upon standing. I think Dr. Raj from Vanderbilt has some more current review articles too but I can't put my finger on them right at the moment.

Very Cool! Even if it holds up in the bigger studies at Vanderbilt and OK, other places will need to verify the findings to have them validated so I'm glad to see that DI is keeping the fund open.

Thanks to everyone who donated/will be donating!!!

I hope somewhere along the line they have you do a cardiopulmonary stress test where they measure your O2/CO2 during exercise.

I know it's frustrating to be seeing all these docs and not finding any positive results but it really may not be a bad thing to be seeing all these specialists. Personally, I'm glad to hear they are sending you to see these various docs. When you're talking about having seizures and turning blue and low O2 sats etc, it really is a good thing to make sure there isn't something that they can identify that could be treated easier than mito disease. As others have said, dysautonomia, mito, are frequently diagnoses of exclusion so that means they have to exclude all these other things first.

Have you had your husband videotape any of these seizures you have? Maybe have him do that, along with showing the O2 sat monitor readings that are low at the time. If you can show the docs those tapes it may make it pretty hard for them to say it's all in your head. Obviously his first priority is making sure you're safe during a seizure but if he can possibly get evidence to show the docs, it may make your complaints more real to them.

Best Wishes!

Potsticker63- the 14% was referring to a study done on different antibodies at Mayo. It was not in reference to this study at Oklahoma and Vanderbilt.

When I'm having this symptom I feel like I'm always having to take extra, deep breaths after even minimal amounts of exertion. Find myself doing a lot of deep sighing type breaths. When I try to talk I get lightheaded just saying a few words and again have to take deep breaths to catch up. I can feel that my lungs will fully inflate though so it's not a restriction in the lungs themselves.

It's one of my least favorite symptoms.

I see Dr. Goodman who is a neurologist at Mayo AZ for my POTS. I'm not familiar with Dr. Shen but am assuming he must be aware of Dr. Goodman since it's not THAT big of a facility and POTS isn't THAT big of a specialty.

I know that Mayo AZ has an autonomic lab for testing in the neurology department and they also do the skin biopsies etc for small fiber neuropathy. There has been some discussion on here that Mayo isn't accepting POTS patients over the age of 50. Don't know your age but maybe they are putting you into cardiology first and then will refer you to neuro for further follow up? I know Dr. Goodman is getting really hard to get in to see so maybe they are getting you in quicker this way?

Sorry I can't help you with info re: Dr. Shen but Dr. Goodman has been very thoughtful in his approach to treating me. Hopefully you can get referred over to neurology once you're in the system.

I have an Omron as well but it never works when I'm most symptomatic.

I finally just went and got a manual cuff and stethoscope. They have some cheap ones even at Walmart where the cuff and scope are hooked together. That's the only way I can capture my weird readings- although when I'm really in a bad state it's sometimes hard to concentrate enough to register the numbers in my brain as I hear the sounds come and go.

What kind of symptoms are making you stay down all day? As Jan said, your BP and HR are definitely looking good but as we all know that doesn't necessarily correlate with how you feel.

POTLUCK- I don't know which specific test he was referring to that came back with a 14% prevalence but these are the antibody tests that I had run at Mayo recently. When I was at Cleveland Clinic a few years ago, they ordered some of these same antibody tests and sent them to Mayo so it seems you can have them drawn elsewhere and sent there.

Neuronal (V-G) K+ channel Ab

AGNA,1 Serum

AChR Ganglionic Neuronal Ab S

CRMP-5, Serum

PCA 2, Serum

ANNA-3, Serum

PCA-Tr, Serum

GAD 65 Ab

Striat Muscle Ab

PCA-1, Serum