sue1234

So, what kind of tumor do they think it is? Is it on or near the pituitary?

That is all fantastic, and I know we all can't wait to hear back on the results! What a fast-tracked method of doing research!

I have had that issue, even prePOTS. All I could think of now, years down the road, pertaining to it happening to me, was maybe I don't handle the pool chemicals well. That could've been either the chlorine and/or the copper fungicides. I have become so sensitive(not allergic) to all kinds of things, like scented soaps, etc., so who knows. The only other thing for me is I have a history of low blood sugar, and it may be that being in the pool used a lot of energy and made my glucose go lower without me understanding what was going on. So, I have no real answers, just two of my own theories.

I hear you on the 'jumpiness' symptoms! People that have true adrenaline surges from a pheo tumor are usually started on an alpha blocker, and then a beta blocker as needed. Maybe you could try one, or one of the alpha/beta combos? Might be worth asking your doctor about. I take Xanax at night to sleep, as it is the ONLY way I sleep. I very rarely use it during the day, but if I have to go to something that is going to make me nervous, I take a tiny dose just to hold down the adrenaline. It works great and just puts a calmness over me.

Yep, curious how it went?

I started with POTS symptoms at 46 and am currently 54. Mine was sudden, and I never had symptoms my whole life, so I think mine must be autoantibody based. That's why I am so interested in the very latest studies on them finding the antibodies, because there are treatments for that. I think what they probably mean is, the people with some kind of hormonal basis, such as it mostly hitting young females, is why it mostly hits younger women versus older women. But, there are sooooo many reasons people get POTS. This is what I've learned over the years from what I've read in past studies(I just call everything POTS, but they each can be a separate name): 1. There is the group of slender adolescents that go through a growth spurt. Due to there "tall, lanky" body type, the kidneys don't have enough fat support to hold them in place. Due to this, the kidney vein gets compressed and causes symptoms. When the person puts a little weight on, this gets better as the kidneys are physically supported. 2. Some adolescents have anemia that isn't "jump out at you" obvious, and in turn causes POTS. When this is corrected, the POTS gets better. Just a thought here, but maybe this would be the basis for the "women over 50 don't get this", as menstruation stops and they are not likely to be anemic if they were before. 3. EDS. This is genetic, so began early. Maybe symptoms began early and maybe not. It may be they hit a tipping point later in midlife. 4. Viral autoantibodies. This can hit at any age, most likely sudden onset. I believe this is the type I have. Just some vague categories I've noticed pop up over the years.

Looney, I began the Acyclovir and didn't notice anything for about 2 weeks. Then I had a couple of days of stomach pain/diarrhea/nausea, so I stopped it. I need to start it up again, because I'm supposed to take it for 3-6 months. Blue, I am like that with my gi system. Sometimes it just stops, as in I need to burp due to air buildup and nothing. The worst is the gas in the intestines that just builds but doesn't move. It really puts a lot of pressure on organs, etc. in me.

Looney, I'm curious what antibodies they found, also. That's why I was hoping someone could message me the full article. I like to have these things in hand for when I make a trip to a specialist. I should clarify that in the title I say "gastroparesis", but in actuality, it is slowing of the whole gi system, from stomach, small and large intestine.

I would think no. It would be like taking midodrine before the test(constricting blood vessels).

I found this posted on Dys. Int'l FB. It talks about research at Mayo where they found that gastroparesis might be autoimmune, and thus be treated with IVIG. I realize it was a smaller study, but they did find 74% had improved gastro symptoms. Surprisingly(or not), they said that most of their patients had "extra-gastrointestinal" autonomic symptoms. After treatment, in the group or responders, 85% of the patients had improved autonomic control. I have ALL the symptoms they list, although nausea is minor and only very occasionally for me. The others get to a severe level, enough that I've been to the ER for them twice in the last 8 years. ANOTHER study that show that IVIG, or actually doing something to address the autoimmune part of POTS, is what is needed to see if it can improve. I'm not saying everyone is autoimmune, but some of us that literally got it overnight or in a very short time-frame, this is a good possibility. I am ready to try this! I would appreciate if anyone who has access to the full article could inbox it to me please. Thanks! http://www.ncbi.nlm.nih.gov/pubmed/25039328

Gjenson, good to know you are getting some benefit. Chaos, oh my! I'm sure I also have a CFS component directly related to the POTS, so all that research could definitely apply. I agree, they need to find some pertinent results that could help. Reading that the various sleep waves are active in the daytime would make sense to explain the "unwakefulness" that I feel. I do know that when my thyroid is not at its adequate level, my mind is fatigued. BUT, when I do get it at the right level, sometimes even on the hyperthyroid level, I still have that fatigued brain to some degree that affects my daily cognitive abilities. Please let me know if you find any new research with some helpful results on this matter(the studies that you referenced). I don't want to miss something new.

Jensen, so are you going to continue the CCB? Does it help in other,areas?

Yea, I'm the same. IF I wake up somewhat, it will be late afternoon/early evening, also. But I definitely always still feel that "unawakened" feeling.

In my past normal life, I would wake up and be all chirpy. I remember my college roommate asking how in the world can I wake up and just be so talkative and happy?? I used to drink coffee and it would add a little boost to my step. Anyway, in the last 2 years or so, I wake and go straight to my living room chair(where I spend most of my day). First thing in the morning I drink iced tea, but I never get that mental boost I used to get for the previous 50 years. If it happens to be too much caffeine for me for that particular day, I will feel my heart beat a little faster and a little stronger, but I get zero mental boost. Anyone else have this? Why is the brain not responding to the caffeine boost? Is there a problem with receptors or something? (I am way too sleep-deprived for my brain to even think. BTW, on nights I do sleep, I still constantly have this "unawakened" brain).

Thanks Katy and Chaos. I have had reports in the past on some lumbar degeneration on CT scans and/or x-rays, but I never had any issues so I never pursued asking about it. And, I am not familiar with how arthritis works. I am only familiar with when older people say they wake up with pain and have to use their hands a while for it to feel better. So, I was assuming I would have pain most of the day, but like I said I am not familiar with this. I think it is time to see a neurologist to check on the lumbar stuff. If they don't see anything that might be causing it, then I guess I can chalk it up to the arthritic hips. In that case, I can still have my replacements, which I don't want to have if I can skip it!!

I get that if I am doing walking that lasts over about 10 minutes. It is like my legs begin to get somewhat stiff and I notice I am working harder at my hip level to bring my leg forward. I have no clue why.

I was just wondering if anyone else had this? I do not have EDS, so it is not any type of hereditary joint laxity issue. I'm not saying I couldn't have acquired some laxity related somehow to POTS!? I find in the last 2 years I've been able to build up my standing time from about 10 minutes 8 years ago to about 2 hours now. That 2 hours is NOT standing still at all, but like moving around in the kitchen constantly while cooking. I might be up for 20 minutes, then feel I should sit for 10 minutes. Then, back up for 15 minutes and down for 5. And so on. I've been building this for the last 2 years. For the whole first year, I told myself that after 6 years of mostly sitting, I had to slowly build up muscle strength. Well, I'm sure I have built some leg and core strength to go ahead and be upright for those 2 hours. BUT, what stops my upright time is "girdle" pain. By the end of my time limit, my hip bones hurt, my very lower back hurts, and everywhere in between those. I don't know why, and that is bothering me. I was told I could use hip replacements, but that doesn't explain the pain around the whole girdle/upper thigh area, so not sure why I hurt so much. My upper back doesn't bother me an ounce from standing and bending to cut/cook, so I don't think it is just unused muscles. Sorry for the rambling...it is hard to explain it all. Anyone else have a clue why I have issues standing? I just want to mention that before POTS, I had zero pain standing all day. The first 6 years of POTS I had zero pain with my limited standing.

So, regarding this promising new research posted in this topic, did they in fact draw blood at the Dysautonomia Int'l conference last weekend?? I was kind of concerned on how they would verify that each donor did in fact have a specific diagnosis(various POTS kinds). I was hoping they found a way to circumvent the specifics and just test blood to see what came up.

I agree, also! I do still get somewhat !!! over articles like this. The research needs to be on the origins of this issue, such as the study looking at autoantibodies. Doing studies like this is a waste of time adding in the psyche angle to it. That's like trying to say someone with cancer can be fixed by giving them counseling. Our illness is NOT psychologically caused. There is no doubt that we do have ranges of anxiety and/or depression, but it is due to having whatever causes the POTS. I am passionate about this, as 30 years ago I began having anxiety attacks out of the blue(sorry for repeating my story, just like to get the awareness out). My heart would begin racing for no reason and I would get mental anxiety. I was diagnosed by my GP as having "anxiety issues"(labeled), and given meds to control it. I had to grapple with how I could not control my anxiety, and I judged myself(felt weak) and was judged for it because I could not work due to it. Fast forward 25 years, and I bought a glucose monitor under the suspicion of having glucose issues. The first time I had my usual out-of-the-blue anxiety attack, I checked my glucose and it was low! A huge adrenaline release happens during hypoglycemia as the body tries to correct the low. Twenty-five years of having low blood sugar and having been chalked up to having a "psychological" issue. So I get really upset when that label is given because they don't understand the root problem.

I voted for a problem with "social phobia". I was never like that before POTS, in fact being very involved in my small town. Since POTS, even though I'm in a decent daily mood(no depression), I don't want to be around people.

Northerndarlene, I don't know if it causes POTS, but boy, wouldn't it be nice if we found out it did?! It looks like something that could be "fixed"! Arizonagirl, did you notice any side effects from taking methylfolate? I took some over a year ago, but it seems like it made me feel bad(don't remember what exactly), so I quit.

I always have high folate and high B6. I do not take supplements. I have read before that gut bacteria take the intake products(food) and make B vitamins. I have had issues with bacterial overgrowth, off and on, and I just assumed it might be from that. I don't know. I am MTHFR heterozygous, so don't convert some of my folic acid. I do not have a high folic acid intake from processed foods as I eat gluten free so prepare most of my stuff.

What exactly do they do to measure blood volume? I had something done with Dr. Suleman where they injected some tracer material then did a scan over my heart for about 15-20 minutes. Was that it?

I forgot Katy, thanks for the well wishes! I hope I do get some benefit. Kris, I'm glad you are better. I'm not sure how much,if any, the EBV plays a role in symptoms for me, but we'll just see. I can't remember right now, but what calmed your immune system down?

I forgot to mention that my crash was exactly a year ago, and I've been "down" for the last year. I am also trying to get my thyroid normalized, and that has been going on since last fall. It seems like at some point during a year, I'm like, "wow, another year just went by and I didn't make any headway." I am 8.5 years into this and just now beginning to get impatient about finding something to heal(as in, what caused this in the first place??).