HopeSprings

Victoria - I'm sorry my memory is failing me at the moment. Are these new diagnoses and are they based on tests done? If so, what sort of testing was done? My next area of inquiry will be with a Dr. to look for small fiber neuropathy. I had some sudomotor testing done when I had my original testing done for POTS, but it came back normal. I still think with my burning feet that SFN is possible and I'd like to get a biopsy done. So does your diagnosis "explain" the POTS symptoms? I mean is the root cause of your dysautonomia ...autonomic neuropathy? And did they say anything about what they think causes that? Congratulations on getting some answers - hope it helps direct treatment and you will be able to get some help.

Well, Hallelujah! You made MY day! Good luck with your surgery. I had my gallbladder removed about 10 years ago. Seems like several of us here had that surgery.

I think the beginning of summer like weather is throwing a lot of us for a loop. It must be very disapppointing to feel bad again after having a period of normalcy. It's like God, I just want to leave all of this behind me and move on with my life, right? It's really great though that you can have better days. I still haven't found a way to do that. Maybe you can take comfort in knowing that it is possible for you to feel better - and hopefully one day that will be permament. (((hugs to you))) Janie said: My mom is ill, and I try to think how I treat her especially when she's not feeling well. There's no expectations, no guilt, but I just wait with her until she feels better. That's the same type of grace that we need to give ourselves. Beautifully said.

The last two days have been AWFUL. My head feels like it's going to explode - so much pressure and dizziness. My heart feels like it's going to come out of my chest. The weather here turned WARM. I understand the heat affects us, but this has been DRAMATIC. I am just still stunned at how bad things can get with this. I don't expect a reponse to any of this - just had to say it to knowing ears (well eyes in this case).

WOW. No wonder my little 1gm salt pill wasn't doing anything. Maybe I need to up the dose. I got my tablets at CVS. They don't have them on the shelf where I am, but can be ordered. I'm sure any pharmacy can get them for you.

It's just mentally reassuring to understand what is causing the way you feel. Also, if we can narrow down the cause we can avoid unneccesary (even harmful) treatments. And hopefully (hopefully) target treatment towards the ACTUAL problem.

For those who take sodium chloride tablets - how many do you take per day and how do you space them out? The neuro who diagnosed POTS recommended a 1gm tablet once a day. I tried it for a few weeks and didn't notice any improvement, then it occurred to me - maybe it wasn't enough? Anyone know?

I get POTSY sometimes while eating (and after too), especially larger meals. It just happened over the weekend, was in the middle of eating mexican food when the dizzy/drunk like fog washed over me. It's such an obvious switch from sorta ok to totally out there. I don't get all the other symptoms you described, but definitely dizziness worsens.

That's ok Janie - just thought it was worth a shot. Do you know if it's safe to wear compression stockings laying down in bed? I mean is there any possible reason not to? I was going to try it and see if it helped at all.

Wow, that's how my hands look too. Wonder if it's just us or do "normal" people also get this when it's hot? Now I'm gonna be looking at everyone's hands this summer - as if they don't already think I'm crazy.

Thank you Todd - this was very helpful. I will also check out the website you mentioned and see what I come up with. Did you need a Dr. referral to see a geneticist or were you able to just make an appointment based on your POTS diagnosis?

I would think the opposite would happen with Florinef, but what do I know. I have this problem at night. Pretty much fine during the day - I lay down at night and the pressure comes. I can pee several times in a row and still feel the sensation. It wakes me up during the night. Very annoying.

Janie- this is from my MRI report: mild degenerative disc disease at L4-L5 and L5-S1 with perhaps minimal anterolisthesis of L5 on S1 and probable pars interarticularis defects. Do you have any idea whether this could cause pain in both legs and/or the burning feet? I'm suspicious because the back pain comes at the same time as the other stuff. The neurosurgeon said no, look into SFN, but a physiatrist I saw said yes, it could be coming from the back. So they cancel eachother out.

This has happened on and off through the years, but there are nights (like last night) that are just unbearable. It was so hard to get to sleep. I start out fine.. within half an hour of laying in bed my legs, from the knees down start to hurt/ACHE like crazy. The bones in my feet, my ankles, my shins, calves all ache so bad and it accompanied by the burning feet. My lower back starts to hurt laying down too and I have some lumbar spine issues, but a recent NeuroSurgeon said this should not cause my feet/leg problem. Anyone else have this terrible leg pain? Is this something with POTS or likely something else? I know neuropathy can cause burning, but not sure about bone/muscle ache. Thanks.

Todd- I hope you don't mind. You seem so certain about the mito connection - I want to know all about it. I could struggle looking through old posts, but it would be easier for me to start fresh. You wrote: "I had metabolic testing, lumbar puncture (spinal tap), and fresh tissue muscle biopsy. My treatment plan was based on the results from those tests, and a year later I don't feel any different or any better. Naomi you're correct most of the information out there is for known mitochondrial variants, what's new in this testing is looking for breakdowns in the 4 complexs of the respiration chain or oxidative phosphorylation." What type of Dr. do you see for this and how do you approach the topic? Can I go in and say "I have POTS - can you please test me for a mitochondrial disorder?" I'm serious. Thanks. ps - I don't really even care that it doesn't change the treatment approach, I just want to know WHY I am like this. Anyone else diagnosed with this?

Is this recent? You started Florinef again, right -- maybe it has something to do with adjusting to the medication again? I'd google "dizziness laying down" and see if you come up with anything. Maybe you should see an ENT and see if it's an inner ear thing? Or go back to whatever Dr. is prescribing the Florinef and see if they know anything? Maybe it just has something to do with POTS -- BP often goes lower laying down. Misstraci (post above) said she has it laying down also and maybe you two aren't the only ones. Try not to be scared. Sorry - hope not to confuse you more - just thinking.

Todd - can you explain mitochondrial disorder? When I looked into it (a while ago) I just came up mostly with specific disorders that affect mainly children (or are obvious from childhood). Can you tell me about mito in easy to understand terms - I found this a confusing area to explore on my own. What is it, what type of Dr. knows about it, how does it cause POTS etc. Thanks.

We think alike. When this all began I looked at Dinet's list of causes and figured I'd go one by one, like going down a checklist, until I found THE cause. So I've been checked for a lot of them - no real answer so far. I still have a few things left on the checklist, but I'm beginning to run out ...and that's when it gets scary. It's also difficult with some of these to find a Dr. who knows anything or would be willing to explore the unusual with me.

Actually I do find that odd. So you feel less lightheaded while standing? I am usually (markedly better) lying down. I assumed it's because of the theory that not enough blood is making it the brain while upright, but laying down allows the blood to go the head. Can't prove it though! I'm sure your lightheadedness is probably POTS related, just not sure how to explain the positional thing?

I haven't tried SSRI's for POTS, but took them in my early 20's (before I was ill) for some anxiety stuff. I had some difficult side effects and the withdrawal was horrendous. I believe that this class of drugs and/or the Klonopin may have triggered my initial illness - my "CFS" or whatever we're calling it. I was not SICK until I started with the "psych" meds. I wouldn't go near an SSRI or a benzo with a ten foot poll. This was MY experience and many other people that I know of - however, I'm sure many people feel they are helped by them.

Definition of Prostaglandin F2-alpha Prostaglandin F2-alpha: One of the prostaglandins, a group of hormone-like substances that participate in a wide range of body functions such as the contraction and relaxation of smooth muscle, the dilation and constriction of blood vessels, control of blood pressure, and modulation of inflammation. Prostaglandin F2-alpha(PGF-2 alpha) is a stable prostaglandin that stimulates the contraction of uterine and bronchial smooth muscle and produces vasoconstriction (tightening) in some blood vessels. Ok, so this is still on my mind. If the above is correct and this "hormone" is involved in these bodily functions ...and yours is low??? I'm sure it's not that simple, but I'd ask the Dr. about it. You never know when someone might just stumble across the answer. Please let us know what he says. ps - I'm not relating this to Mast Cell stuff, just POTS

I assumed most of us were low, until recently noticed several people are high - just wanted to see what's most typical with us. Please answer based on where your BP would be without medication.

What an inspiring post! Good for you - you did the right thing. Sometimes it's hard to see the stress being caused when we are smack in the middle of it all and then one day it's hit us... wait, this is toxic and I don't have to be here! I have eliminated certain people from my life that were bringing me down - I have enough to focus on, my children, my health... finding a cure don't have the energy to focus on nonsense.

--I was curious about your low prostaglandin and found this: Function There are currently ten known prostaglandin receptors on various cell types. Prostaglandins ligate a sub-family of cell surface seven-transmembrane receptors, G-protein-coupled receptors. These receptors are termed DP1-2, EP1-4, FP, IP1-2, and TP, corresponding to the receptor that ligates the corresponding prostaglandin (e.g., DP1-2 receptors bind to PGD2). The diversity of receptors means that prostaglandins act on an array of cells and have a wide variety of effects such as: cause constriction or dilation in vascular smooth muscle cells cause aggregation or disaggregation of platelets sensitize spinal neurons to pain decrease intraocular pressure regulate inflammatory mediation regulate calcium movement control hormone regulation control cell growth acts on thermoregulatory center of hypothalamus to produce fever acts on mesangial cells in the glomerulus of the kidney to increase Glomerular filtration rate Prostaglandins are potent but have a short half-life before being inactivated and excreted. Therefore, they send only paracrine (locally active) or autocrine (acting on the same cell from which it is synthesized) signals. --I bolded the first line because it stuck out in relation to POTS. What did your Dr. say about the results? Naomi

I know, it's crazy isn't it? And it's the bizzarity (is that a word?) of it all -- the inability to make sense of the symptoms, that is most frustrating. I have the pressure in the head thing A LOT and when I am especially dizzy, I feel the pressure most in the back of my head too. Doesn't correlate with BP for me either. I was feeling pretty dizzy and pressury yesterday too and I wonder if it has anything to do with all the rain we've been getting. Maybe something to do with barometric pressure? Glad you are doing a little better now.