Clairefmartin

I have been on lovanox for a year with no side effects, I have heard of Coumadin causing problems with many people (even non POTSies), so I opted for the lovanox shots. Have they tested you for clotting factors? I would HIGHLY recommend it - the Factor 5 Leden gene can make clotting a real issue, and cause issues with amy kind of PICC or Central line/port, and is fairly common.

If they can not help you, they can inpatient send you to another hospital that can. I was shipped off to Hopkins, thank God, from my local hospital. There is nothing wrong with asking if you dont feel you are getting the care you need/deserve. You can also demand different doctors. It sounds like you have some serious issues going on, and the clotting (even if its not a DVT) makes it a BIG deal. Did they check everywhere for clots? Including your jugualr and heart?

Sorry about the 20 questions, but I was improperly cared for with a PICC line and clots - and it almost killed me and could have been prevented. Feel free to PM me

Claire

Go in. I had a doc tell me if it was once in a while, and just a few - normal. If it's that frequent and thats not your "normal" - get it checked asap. Not an issue to mess with. IMO. (((hugs)))

Claire

I have often wondered about this myself since mine started at the end of pregnancy when all those structures tend to enlarge. I remember seeing my heart beat in my stomach when I was about 25 weeks and it has been that way ever since.

me too! my entire pregnancy was messed up POTS ****, and I never had pooling before it. Now apparently all the pooling is going into my right leg, where i have a massive neuropathy painful patch on my right thigh (occured during pregnancy), and all my weakness issues are on my right side of my face.

Weird.

Issie - thanks for info - i've been GF since 2004 I think mine are related to a spinal fusion surery, thats when all my issues started. I didnt feel my right foot for a year. inteterstingly, thats the foot/leg giving me isues. As well as thr right side of my neck and face. Weird.

Issie - I'm all for purple bandaids!!! I love purple. My "plan" is to go at it hard to get this figured out and get a solid DX before starting the trial and error pharm meds, and make the rounds to all the specialists - then add in the suppliments. I alsways iove up and have never gotten asnwers (over almost a decade), but I am so non-functional I can't afford that now. No one has even tested my D or B levels, and some others I want tested to find out if I have difficiencies.

Next stop: neuro (moved here from Cleveland Clinic), a GI doc - need to find one, andmaybe a genetisist if my hematoogist fights me on testing for some of this stuff.

Jackie - I know they are testing my C1 emelayse (sp?), which I looked up and is for Lupus. I have asked for Sjogrens, and I asked for my aldosterone levels to be tested (which they did not - annoying!). I also asked fro a biopsy for SFN, I have patches of neuropathy all over, and the techs said they would mention it (b/c my sudoscan came back perfect, but they agreed I needed a biopsy). I'm now taking everything to the neruro Chemali, as he diagnosed a friends severe life threatening Sjogrens that came back neg on all the other tests - it had been causing neuropathy and her POTS, she is now getting IVIG and regained function big time. I guess he is a really great diagnostocian. If you have the name of a GI doc that knows anything about dys in our area (it may be in our PMs) I'll take it

Thanks for all the input everyone. Baby steps i guess ....

That did make sense Bren, thank you. I'm possible MCAD or autoimmune something, as well - we sound similar. I cant wait to get the standing norepi results, if I'm hyperPOTS/ hyperadrenic or whatever they call it, I will go ahead and pursue the MCAD - they want to biopsy my stomach/intestines for mast cells.

I'll have to do more research on OI, I have always thought of that as more of a catch all term when they dont know whats causing tthe postural change issues. And one of the techs mentioned idiopathic POTS - which is a load of crap IMO (I just wrote a LONG blog post on this), something is causing my SNS to be wacked-ified!

Rama - I always think of OI as "POTS lite" Yeah, NMH fits, but y heart rate going up 50-60 bpm upon standing is POTS!

Jackie - thanks, I'm glad you chimed in, Matt (the PA - have you met him? REALLY nice guy), said I have definite dysautonomia, with sympathetic overactivity, and tachycardia. But kept saying "you are not presenting for POTS". He even said Vinik doesnt believe in TTT, and wrote a paper about how they end up causing misdiagnosis. No neurapathy mentioned, they didnt test me for much in terms of autoimmune stuff, I'm requesting a sjogrens work up and SFN biopsy.

Katie - I agree! I am now getting copies of all my tests and visit notes so I can see what they are saying. And we will be discussing the POTS issue, I'll bring the recent Autonomic Society definition of POTS to my next visit, it really bothered me.

Oh - and in the good news department - I was JUST approved for SSD! Yay!

Had my second autonomic function testing (CANS test) this AM - looks like my sympathetic is WAY out of whack, overcompensating for the fact that I have massive pooling in my right foot - they followed the CANS up with a doppler heat scan test with heated electrodes attached to my feet. There was a huge difference between my feet - my left was high, but my right was literally off the chart (they were actually whistling - that a new one). Funny thing is, my feet don't even swell, just turn red/purplish.

I was also FINALLY tested for hyperPOTS, I only lasted standing for a minute for the catecholemine blood draws, then grayed out (lost vision but could hear) and collapsed twice.

During the Cannes test (ANS breathing test with valsalva), my HR went up to 150 on standing, BP goes up a bunch, then crashes. I greyed out 2 more times, once while just sitting. They told me I did not present for pots - which I told him was crazy - and we went over the semantics, but it looks like once they find the cause of your pots, like whatever they will call this (hyperadrenic maybe and nmh?) they no longer refer to it as pots?? I'm confused as to why they would keep saying I do not present for POTS, as my HR more than surpased the minimun requirements. Anyone know why they are saying this, or encountered this?

So I feel like death, but got some answers (it's a start). I will be taking these results to the neuro in a few weeks, as this doc can't see me to discus until April. The PA mentioned midodrine and full compression stockings. We'll see. Sorry so long!!!! Oh, and they said my ANS is intact and I don't present for MSA of PAF, which is good. Thank God! Any input/thougts appreciated. Thanks.

I had taken the same low dose (under 1mg/day) of Ativan for years, and was feeling terrible, but when I switched to Klonopin it changed my life. My terrible tremors and the constant internal shaking/adrenalin surges were controlled! It was wonderful. I took .5 in th AM and .25 in the PM. I never felt any side effects or high/drowsiness/oversleeping - if you are on the proper dose it should just calm your CNS, no other effects.

That said, when I found out I was pregnant, I freaked, and tapered off under Dr suprvision. I still think they took me off too fast, and it, along with my crazy POTS gone wild, ended me up with vertigo for a month straight. And non-stop, crazy, zero gravity vertigo. I guess they treat vertigo/Meniers with Klonopin, and the docs mentioned that it may have caused my ears to retain fluid in some way (while the rest of me was dehydrated) due to withdrawl. It only subsided one they had me on slow drip (100/hour) IV fluids.

So I came off it, and was ok once on fluids, but was in the hospital the whole time. Then I found out I had a massive clot in my heart from the PICC line they had placed (just waiting to break off and kill me at any time), and my anxiety levels skyrocketed. At 14 weeks along, they started me on Florinef, and I had to start the Klonopin again to counteract the steriodal crazy feelings I had from the florinef.

Long story short, the Klonopin was slowly tapered up -that was how they treated everything with me while I stayed hospitalized for almost 9 months (I came home late August). I have been on 1.75-2mg/day since then, and I'm annoyed the dose is so high, but it seems to be the right dose for me for now. It is the only thing that aleviates my symptoms, and since I cant stand right now for more than a minute or two, I'll take any relief I can get.

Some people are very anti-benzos, but klonopin is supposed to be the easiest to come off of (according to my multiple docs) and is way less addictive than the others. I plan to try and get back to my old dose once I am up and moving more, but until then, I'll take any help I can get!

Sorry so long - but Klonopin gets a bad rap, but it helps many, and just needs to be monitored closely.

Best of luck!

Claire

There is also a new Neurologist in Norfolk, VA who is from the Cleveland Clinic that many POTSies online love, his name is Dr. Chemali. I'm thrilled he is here and am in the process of getting an appointment.

Hope it goes well with Dr. A - he's supposed to be great!

Claire

Thank you for posting this! I just got all my neuroendocrine reults back and my insulin was high, they are looking into it more. And I have the SAME issues - my blood feels like it sloshes around my extremities. I raise my hands, they turn white. I let them hand, they are swollen and red. And I have massive reactions to sugar/carbs! And all the symptoms of hyperPOTS, I'm finally getting the standing catecholemine tests done next week.

I may have missed it, but what were his treatment suggestions? I'm actually going to print this out, because I really feel with my insulin issues, it is relevant. Unfortunately, the doc I saw wants to treat with BBs. I DO NOT do well with any BBs I've tried before, and don't want to use any more.

Thanks again for posting!!!

Claire

they said I have NO peripheral neuropathy ( is that the same as SFN??? or the autonomic neuropathy?) based on this new Sudoscan test. They didn't think I needed a QSART, or any other tests until we do the CANS breathing test again.

What is this Sudoscan test? Just want to mention the autonomic testing I had done did not show neuropathy, but a skin biopsy did. And what is the CANS breathing test? This Dr. doesn't sound totally useless, but glad you're going to Vandi anyway.

That is what I have heard, lots of negative until an actual biopsy is done. There is a neuro from cleveland clinic that just moved here that I have heard is good, and diagnosed a POTS friends SFN, and Sjogrens actually, I'm going to see him next if I can't get it straightened out.

Here is a link to the Sudoscan http://www.impeto-me...or-dysfunction/

I had never heard of it. It is a set of metal plates you place your hands and feet on, and they measure ionic output.

He did say that he thought my PNS was out of whack with my SNS and we need to figure out which is causing the problem so we can straighten them out. So that is promissing.

I'm just tired. This is a decade of dead ends, but now I'm so freaking non- functional and there is no end in sight, I am just so angry/tired/worn out/etc.... its really overwhelming. I usually handle things well, but I've been homebound for over a year and I'm ready to see some kind of improvement.

I had my hopes all high for this visit today, and as always, was let down. They did not even stand me up the other week for my breathing test (he called it as CANS test), and I told the tech that I needed to be stood up to see my symptoms - but she didn't want me to faint, and said they would still see what they needed to while reclined with my feet up in my wheelchair (bull!). So all they saw was tachycardia. The PA and doc were annoyed, but I had to push for explanations and lab result numbers.

They now have to re-do the test correctly, and will be drawing (at my instistance) standing catecholemine levels - norepi, dopamine, etc... to test for hyper POTS, finally.

All my neuroendocrine stuff came out normal, they said I have NO peripheral neuropathy ( is that the same as SFN??? or the autonomic neuropathy?) based on this new Sudoscan test. They didn't think I needed a QSART, or any other tests until we do the CANS breathing test again. All my autoimmune tests came back negative (I'm waiting on the list of what was tested), my MRI (without contrast) was normal for structural abnormalities, which is good. I asked about having another MRI with the contrast and they said "lets see if you even have POTS first". REALLY??? ***!!!! I have had POTS for almost a decade - I offered to show it to them by just standing up. They saw it when I stood up last time, and my BP plummeting as well, but I guess they want the formal tests to show it, but they did not order a TTT. The only thing off was my Alkaline Phosphatase was high (I have to look that one up), and my insulin was a little high, but I had just eaten and am fat from being in bed for over a year now so they weren't concerned.

They also told me to go see a GI doc ASAP, i have really bad right side pain, and upper chest pain on the right, and when he palpated my stomach I yelled when he pushed on that quadrant (I have been trying to ignore it). So now I have to go get checked for my gallbladder. Along with the searing pain in my esophagus and crazy stomach acid issues.

Oh and my trypase was 4.6 - totally normal, and my methylhistamine was perfect they said, so they don't want to pursue MCAD, but are testing me for another autoimmune marker - C1 Astrase - have to look that one up too.

I'm so pissed right now if I could muster the energy to move I would throw something.

Sorry for REALLY long angry post. This doc is supposed to be one of the best neuro-endocrine docs in the counrty, and the only one with an autonomic lab in town, and I'm losing faith FAST. I'm glad I kept my appointment at Vandi.

Ah, do you have the link to her blog? I'd like to read!

Its www.POTSgrrl.blogspot.com - Lauren is my blogging buddy Great info on there.

Rama - I feel like you need a third option: Recieved IV therapy and have good longer term results - or something of that nature. Some people I chat with get IV infusions once a week and do well on it.

Thanks!

Claire

((((Chrissy)))))

So sorry you are dealing with this disappointment. Relationships are tough in the best of circumstances, BUT you were dealing with a long distance component, not to mention your illness. My thought is that he was in love "with the idea" of you, without realizing what he was really getting into. I'm guessing you felt the same way about him. When you date long distance, you have the opportunity to only show the best part of yourself....which worked fine until you couldn't sustain the image.

The thing that bothers me the most is that he was IMing your MOM, complaining about you. ARE YOU KIDDING ME? You must have been furious. When you're calmer, please have a talk with your Mom and request that she re-direct your "significant others" if this should ever happen again. She should have said: "I'm sorry, ________. Please let Chrissy know directly what you are feeling. I will not be in the middle of your relationship." You must feel a little betrayed by her as well as him.

Your young man sounds VERY needy to me. I think you are better off without him. I know it doesn't feel that way now . You are wonderful & someone who is willing to take the time to learn all about the real you is around the corner. I suspect you can do better.

BTW, I think it's great to keep the "Happily married" and "Happily-in-a-relationship" categories for your poll. It IS possible

Big Hugs-

Julie

A big old "I agree and don't need to repeat Julie!"

Sounds very very needy. My husband being so domestic (he's from Germany, men do chores there!) has been a huge plus for us (me specifically), and his laid back self sufficient attitude and nature balances out my Type A-ness, plus how needy I am now that I'm in a major flare up.

Anything that bothers you gets magnified by 2 milion when married, or living togther, so GO WITH YOUR GUT!

-Claire

McBlond - has your BP mproved?

My friends Dad owns a pharmacy that does compounding in the US, I had asked about this a few weeks ago, this was the response:

"Hey Claire, He doesn't compound aldosterone because it is insanely expensive without much need. The precursors to aldosterone are not expensive though and should convert to extra aldosterone in your body. Progesterone being one of them...may I ask you a question? During the third trimester were you doing a little bit better? I know you were stuck in a hospital...no fun, but I am curious if you felt slightly better in your 3rd trimester than before you hit your 3rd trimester? My father said he would be curious about hormone levels, mineral levels and fatty acids that your body is producing. Thought I would ask. "

Thoughts?

-Claire

Thanks for summing it up so nicely! TOTALLY AGREE! And I'm for reporting the ones that are extra nasty, they have no right and I don;t want to see others go through what I have.

thanks!

Did you just whip that response out off the top of your head??? Why are you not working in a lab somewhere (or are you?)? I have a bio lab background and feel a little spaced out and am drooling a bit from reading all this

In other words - thanks Rama! We need to start sending your thoughts to these researchers! So basically any number of checmicals could be triggering the NO and causing vasodilation, or a lack of NO causes vasoconstriction?

You have 31 people in your family with POTS? Or did I read that wrong?

I'm very sorry about the ignorant stupid doctor, I hope you keep pushing and find someone with their head connected to the right end. Do you have POTS as well? That makes it even harder to keep pushing. Good luck and I hope you get some treatment, that is terrible.

A lady I know whose kids have MCAD and POTS compiled some really interesting research, would love opinions on this (sorry if its already been discussed, I searched the forum and didnt find much):

"OK, I wonder if I may be on to something here. At the very least, I’m learning a lot. Please post your thoughts.

We know that Nitric Oxide levels tend to be high in POTS patients, as seen here:

Cutaneous constitutive nitric oxide synthase activation in postural tachycardia syndrome with splanchnic hyperemia.

http://www.ncbi.nlm....pubmed/21642500

(Splanchnic hyperemia is blood pooling in the stomach)

Flow-mediated vasodilation and endothelium function in children with postural orthostatic tachycardia syndrome.

http://www.ncbi.nlm....pubmed/20643249

Nitric Oxide also is shown to be increased in patients with migraines:

Increased asymmetric dimethylarginine and nitric oxide levels in patients with migraine.

http://www.ncbi.nlm....pubmed/21359872

Nitric oxide supersensitivity: A possible molecular mechanism of migraine pain.

http://psycnet.apa.o.../1994-14066-001

And in patients with CFS/ME:

Kindling and Oxidative Stress as Contributors to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

http://www.ncbi.nlm....les/PMC3022475/

(This is an excellent and thorough article that points to oxidative stress as a factor in autonomic function.)

As well as Multiple Chemical Sensitivity:

Elevated nitric oxide/peroxynitrite mechanism for the common etiology of multiple chemical sensitivity, chronic fatigue syndrome, and posttraumatic stress disorder.

http://www.ncbi.nlm....pubmed/12000033

In fact, Nitric Oxide’s role is multifaceted, and an excessive amount can lead to neuronal injury:

Nitric oxide in health and disease of the nervous system.

http://www.ncbi.nlm..../pubmed/9246670

Neurobiology of nitric oxide.

http://www.ncbi.nlm..../pubmed/8978984

Including Mitochondrial dysfunction:

Nitric oxide-induced mitochondrial dysfunction: implications for neurodegeneration.

http://www.ncbi.nlm....pubmed/12543245

Nitric oxide, mitochondria and neurological disease

http://www.sciencedi...005272898001686

So what causes high levels of Nitric Oxide? Histamine? Quite possibly:

Nitric oxide: a regulatory mediator of mast cell reactivity

http://journals.lww....st_cell.47.aspx

Nitric oxide accounts for histamine-induced increases in macromolecular extravasation

http://ajpheart.phys...6/6/H2369.short

Nitric Oxide and Histamine Induce Neuronal Excitability by Blocking Background Currents in Neuron MCC of Aplysia

http://jn.physiology.../2/656.abstract

Nitric oxide production in human endothelial cells stimulated by histamine

requires Ca2+ influx

http://www.ncbi.nlm....pdf/9480877.pdf"

Thanks Rama!

I agree with Lenna...I'm on Losartan, too, which decreases Renin/Aldosterone production in the kidneys and adrenal cortex to decrease vasoconstriction, and I have symptoms of hyper/ low flow and high flow, so where do I fit into this weirdness One minute I'm an ice cube, and freezing and the next, I'm on fire and sweating/flushing. Very rarely do I feel normal, temperature wise. I'm thinking it's my hypothalmus.... I'm way past menopause, so I can't explain it away with that, as I used to think, to understand all of this!! In fact right now, my right hand is cold and my left hand is hot, and I'm typing

That may be PD POTS - which I have heard is like bi-POTS, with the swings? Anyone else heard of this? It was mentioned in another group, many of the teens are diagnosed with it, which makes me believe it may be hormone related?

Cleveland Clinic is right near by, and will have specialists across the many "ologists" needed to treat POTS or POTS related issues. Can't hurt to get a second opinion - even if you feel you will be "cheating" on Dr. Grubb He is a wonderful doc I've heard, but you need to get your medical needs met, nothing wrong with that.

Best of luck, keep us posted!

Claire