Clairefmartin

Happy Dance - woot woot! SO happy for you!!!!! And good call on Dyna kids, I've heard from many teens it is really helpful. GREAT NEWS!

Claire

I have been on blood thinners for a year now, with no reactions. Not Asprin, but many rounds of heparin and then Lovanox. I would think if someone is hypovolemic with "concentrated blood" like I had during pregnancy, it may help a bit? NOt sure. And Ibupfofen actually helps me a lot - at least in the pain department, with no adverse effects.

The only thing directly reated to POTS that could makes clotting and increased risk is being sedentary. The leg pooling itself will not cause clots, but sitting or laying for copius amounts of time increases risk. I am the blood clotting queen, I had multiple DVTs, a huge clot in my heart, and over a dozen pulmonary emobli - all from a PICC line. But I had ALL the major risk factors: pregnant (huge increase in risk), on bed rest, PICC line (known for causing in clots on 50-70% of patients), and I have the Factor 5 Leden gene - thankfuly heterozygous.

Do you have symptoms of a clot? If you are laying down or have your legs elevated (or wear compression stockings), that should reduce any pooling/swelling. Clotting pain is very specific - it is a deep pain in a small area, and the area gets swollen usually and is hot to the touch. My jugular was completely clotted off before the negelgent rehab facility I was in finally dscharged me so I could get help - I couldnt move my neck. And lots usually hurt more when upright. I felt like I was being strangled and suffocating with my chest clots (emboli).

Claire

Just a quick update and question: I got my 24 hour methylhistamine back and my trptase - and both were "well within normal range". That was all I was told, because we were waiting for the paramedics to get to my house, I was having severe chest pain similar to my previous blood clots, and had to go get checked out (and I cant travel by car yet, only stretcher). I didnt think to ask for numbers. And no more emboli (thank God), just "residual pneumonia" whatever that means.

I need to get the actual numbers, and will do so when I go in on the 16th for my follow up appt. My question was should I ask for another test? Are there other tests besides the urine and blood work? My GI tract is such a mess, I'm wondering if they do endoscopies/biopsies or the 24 hour pH test as a part of a mast cell DX work up?

I'm a fit for MCAS - have every issue listed as common with it, and I know sometimes the lab tests can come back negative if you are not in an accute attack. I have never had my throat close up completely, but have itchy/swelling/hive/weird reactions to random foods and triggers. My allergist thinks my skin definitely lends itself to mast cell issues, but my lab tests do not.

Any thoughts? If my neuroendocrine doc on the 16th isn't much help with this, I may see if I can go see Dr. Stewart in Richmond, its only 90 minutes away. Does he see patients based on history? Or do you need lab numbers?

Sorry for all the questions - and thanks again!!! Such a confusing disease, but it just fits everything together I have been dealing with since my teenage years!

Claire

GReat summary- thanks!!!

No other input I'm very confused! But thanks Jangle, and I read your entire thread! Good stuff!

Hi everyone,

There is a lot of research and talk going on, an I just wanted some clarification if you don't mind taking the time. I am on the hunt for anwers for myself and of course others I know dealing with POTS.

So....what are the current theories on what causes POTS? I saw RAMA summarize 5 main theories quite nicely and can't find the thread! Especially hyperPOTS (where no other cause is found such as EDS, Lyme, or Sjogrens)

I know there is the Low Flow/Normal Flow research going on

The NO deficiencies

The Ang II issues

Mast Cell Issues

If you have any input or links to papers I'd apprecaite it, I'm trying to present this to me local docs (for what it's worth). THANK YOU!

Claire

Thanks Jangle! I am scheduled to go to Vandi in July, I will add it to my list

And my 2nd pregnancy was also horrid - I'm thinking I have an autoimmune issue as well since I have Raynauds and possible Celiac (getting tested for the gene, I have been GF for years). And every woman in my family on my Moms side had thyroid and autoimmune issues.

Thanks again for all the info!

Claire

I think being a Jedi would help tremedously - with no head transplants needed!

How do they test angiotension 2? Blood work? I'm in the middle of getting lots of on demand labs to try and figure out whats causing my POTS, and I have autoimmune issues. Thanks!

Great post! I think anything that helps is great, I just don't like the "cure all" thing.

Question - what was this referring to? "When I was first hooked up, my coherence was only 3 % in the 15 minutes they were recording it.The dr just looked at me and said "this is not good". After 5 treatments and working at home I was able to get 55% coherence." Have never heard the term coherence.

I'm looking into a doctor who does these "auricuar treatments", http://fibromyalgia-treatment-center.com/Diagnosis.html - my insurance may even cover it - they are local and I guess he is one of only 5 doc in the country licensed to do it. I have had bad luck with traditional medicine, am looking into combining it with more homeopathic and alternative treatments.

Please keep letting us know how it goes! Thanks!

Claire

I was agreeing with you Rama - I'm usually hypovolemic but nursing is like getting IV fluids for me right now And there is amazing research going on, and more people speaking up to get the word out - hopefully motivating doctors and maybe drug companies who fund much of the research moving. I see an a lot of angry patients on various boards/pages, and they are fighting for treatment, which makes me happy.

I wonder what hormone or mechanism that controls nursing switches the flip - or if aldosterone is invoved? I just had all that lab work done, and I think they tested my aldosterone, and I'm wondering if I'll need it re-checked after I stop. You are very knowlegable about the mechanisms of POTS, would love any thoughts if you don't mind. Thanks! (And sorry for hijacking post)

What Carol said is so true, it really looks like POTS is a symptom/syndrome and not the disease itself - something is causing POTS, be it autoimmune, hypovolemia, NE, etc...I wish more doctors would look for the cause and taylor treatment to it, instead of trial and error meds.

And Julie - my first pregnancy did the same thing, complete remission! Lasted through nursing. Second was a nightmare, but now that I'm nursing, I know I am retaining fluids - I can see my veins (Wendy and Rama) and am not peeing constantly. I gave 20 tubes of blood the other day with no clotting in the tubing, before they struggled to even get a single tube out of me. I wonder if I can just keep pumping until menopaus (sp?)? I still feel terrible, but I know I am hydrated, and my BP is much higher than normal (unless I stand up for a minute or two). I don't want to know what will happen when I wean my baby.

This is part of the problem with the studies that keep being published - they make sweping statements about the causes and cures for ALL POTS patients - but that includes people over 59!! Makes me so mad. Sorry you wasted your time, but hopefully it is a blessing in disguise!

Wow! I worked around decaying marine mammals right before I got sick - doing necropsies and rescues off the beaches here for the local stranding team (not always live ones). I wonder if this is true of marine mammals? Thanks for posting - how interesting!

Love hearing this! And I too stayed away from teh forum when I went through a few years of well time - it was very depressing and hard to read. So thank you for coming back with an update! Best of luck!

FOR THE WIN!!!! Yay!

Which is why a certain doctor's sweeping statements about all POTS being caused by deconditioned small hearts is balony. That is my edited word for it.

ME! I was actually setting up an underwater reserach site when POTS hit, swimming 5-6 hours a day while diving. Also had started sports and dance at 3 and done everything - snowboarding, skateboarding, soccer, basketball, etc....Still wnet to the gym on and off for years with POTS and was very active (would design flowers for 16 hours a day sometimes) until recent "relapse".

Thanks Thankful I love saying that. I think I'm going to talk to the neuro about the SFN of nothing comes of the test I had. they did say they had a QSART, and they may end up doing it if they didn't see anything.

And Jackie - did you do the whole breathing test? I'm really worried about being reclined - I wanted to push to get the extreme reactions I get when upright (even sitting) so they can Dx me and see how bad my POTS is right now. And did you do the sudoscan thing? Did they find anything? Thanks for chiming in I was going to PM you.

Thanks!

I just found this!! WOW!

http://biologyofkundalini.com/article.php?story=Histamine

Great summary and breakdown of how histamine works in the body.

And thanks Lyn, that is one of the few great articles linking hyperPOTS and MCAD.

So sorry to hear about your Mom, Carol. VERY sad. Sounds like she was quite mismanaged medically, but her docs had probably never heard of POTS/MCAD. There IS a strong genetic component to this (despite the medical literature) and my Mom is also affected. You will NOT have the same outcome as your Mom because you are figuring it out and getting the proper treatment.

I didn't mean to be a downer when I said that I see patients worsening as they get older- I do, BUT that's because symptoms that may have been mildly present our whole lives kick into high gear with major life stressors- surgery, accident, any trauma, chemical exposure, etc. Those things tend to accrue as we get older. MANY patients (like me) ultimately find med regimens that are very effective. I STILL have bad episodes, but know how to treat them to recover more quickly. I certainly no longer feel like I am fighting for my life on a regular basis

Claire, as far as GI stuff being related to MCA- oh YES!!! The GI tract is FULL of mast cells. GERD, excess acid, IBD, "D", "C", motility issues, nausea, vomiting, etc are ALL manifestations of MCA. Gluten sensitivity is common among the masties, as is Reynaud's. Most of us end up having the Addisons/Cushings work-up as MCA presents similarly. Sounds like you have a great doc and are getting a thorough work-up. Ranitidine (and PPI's if needed) really help with the GI stuff- as does gastrocrom, a mast cell stabilizer. Having a good MCAS/MCAD med regimen will help with the GI stuff and

Thanks for the clarification! That would explain A LOT! I have all of the above. Do you know of any good journal articles that outline that? I only have two articles regarding MCA issues, I'd like to add to my coolection

Thanks again!!

Claire

So had my first round of autonomic testing by my new endocrinologist yesterday and it was interesting - and I'm a little concerned. I was administered the breathing test, but they had me in my reclined wheelchair, and my BP didn't do much. If my legs had been down, my BP would have gone crazy, as I get symptomatic just from sitting up straight and having my legs down. They didn't want me to push it, and actually nixed the entire 5 minute standing portion (I would have been out in a minute or two). My heart rate did increase, the tech seemed to think it jumped significantly. I do know that I was shaking and felt terrible after. The valsalva breathing gave me childbrth flashbacks

I then had a SUDOSCAN, which is the new fancy sweat test out of France. It supposedly uses ionic response to measure neuropathy and autonomic disfunction. Here's the link: http://www.impeto-medical.com/clinical-research/completed-studies-sudoscan-plus/ . You rest your hands and feet on nickle plates, and the scan only takes 2 minutes.

It came back completely normal according to the tech, which is weird, because I have terrible pain and tingling/numbness in my hands and feet. I asked if it tested for small fiber neuropathy, and she said yes, but that it was hard to diagnose. I thought you had to get a biopsy to test for SFN? I'm a bit confused.

They then took almost 20 (big)tubes of blood, incuding a bunch of testing for endocrine tumors, autoimmune issues, and tryptase (for mastocytosis). Needless to say I'm feeling pretty worn out, and a little worried that everything will come back normal and I will still have no answers as to why my BP and HR are still so crazy 5 months postpartum. Or why I have POTS, which is my real question.

A neurologist from the Cleveland Clinic just moved to the hospital group 2 blocks away from me, I already requested a referral from my cardiologist just in case I get no answers from this endocrine doc. I'm hoping this was just the first round, I was expecting a full autonomic workup, not just the two tests. They did no standing NE, which I have never had and really want. I will ask at my follow up in a few weeks.

Anyways, thats it. I have to get back to caring for my barfing 3 year old with a virus and my infant FUN! (this is why I need to get better!)

Claire

Thankful - I just talked to the allergist, and he said there is a new thing called "pork-cat syndrome", where the albimin in pork has a shared epitope. I'm VERY allergic to cats. How weird - who knew?

Or maybe it is the amine issue - I will look into that as well. THANKS!

I'm so sorry you are being told the same junk most of us have heard. Here is a great journal article to

share with any future docs (and maybe ditch the one you just saw):

http://jnnp.bmj.com/content/80/3/339/reply#jnnp_el_4620 There are 4 journal citatacions in that as well with other studies differentiating between stress, anxiety, and POTS.

Also this from my blog because I am so fed up with this issue: http://bellaflorablog.blogspot.com/2012/01/open-letter-to-all-doctors-regarding.html

Good luck and don't give up!!!

Claire