McBlonde

Wow! He's one in a million!! Hang onto him! So glad for you!!

When mine was tested, they had me lie down in a quiet room for 15 minutes and do a draw and then strand up for 15 minutes (or rather try to) and do another orthostatic draw. As I remember it, they put it in a very cold tube and it has to be spun immediately and then iced to be done correctly.

Oh no Issie!

I am so sorry to hear this!! Steroids .... was it Prednisone? can do this to a patient. They did have you taper down, right?

Hugs and prayers to you!!

I thought this was an interesting article. I know my hypothalamic-pituitary-adrenal axis doesn't work correctly. I don't feel depressed, but sometimes more like do feel like this:

http://neuro.psychiatryonline.org/cgi/content/full/17/2/159

Also celexa is different than an antidepressant, it is an anti anxiety

Actually Celexa is an SSRI as well - its an antidepressant selective serotonin reuptake inhibitor.

There are a few things going on in POTS. Firstly your sympathetic system (flight or fight related branch of the nervous system) is overactive when you stand and sometimes all the time. it is this way either as the primary problem (according to a few theories) or is activated to compensate for a circulatory or autonomic abnormality that is causing abnormal blood flow.

The results of this activation are that we can sometimes feel hyped up, jittery, sensitive to fright and startle and we find that all the things that engage the sympathetic nervous system - scary movies, over stimulating environments, or minor stress or nervousness - make our bodies over react to the stimuli or actually bring on POTS symptoms. Sometimes the body will shoot of adrenaline to try and reroute the abnormal blood flow but this can actuall make us worse - incrase sympathetic stimulation and cause more vasodilation from beta 2 receptor activation or trigger vagal/parasympathetic withdrawal.

True panic attacks are psychogenic in nature. A thought or a fear cascades into a full blown fear episode. Research suggests that in true panic attacks there is a massive increase in serotonin reuptake and turnover in the brain.

In POTS there can be true panic attacks, but more often there are what people call adrenaline surges - simply the results of sympathetic excess or adrenaline being used ineffectively by the body to correct the blood flow problems abnormalities. But the same branch of the autonomic system that is partially involved in making the adjustments to standing is also involved in preparing the body for flight or fight and the brain can actually misinterpret these symptoms.

In terms of working out what 'type' of POTS you have its pretty hard because you cant really tell from symptoms (as all POTSies have increased sympathetic activity) and secondly the research understanding of the delineations is in its infancy and subject to wide disagreement between research groups. Some break them up based on leg blood flow, others claim that true hyper patients are those that are hypovolumic (low blood volume), others that its to do with the faulty reuptake of a chemical that activates the sympathetic nervous system. None of these various theories haev at this stage translated into different treatments.

Normally what they do is try florinef or a beta blocker and see how you respond to those. But you will find wide variation in people here because POTS may actually represent 12 or more separate diseases. Confusing or what?

Wow.... that's really a great explanation ..... Thanks for spelling it out like that!

I'll have to look into celexa, I was taking clonozepam for quite some time but it didn't help with the pots at all, or really at all in general. And thanks for all the support, I haven't been able to find anyone who understands and then luckily I found this website, such a big help!

That's a clue there. If it were just panic attacks per se, the Klonopin would have controlled them most likely. I know exactly what you mean, too. Even after 9 years of this, tonight when I posted earlier, I was feeling like I was at death's door. issie was so kind and reached out. Then, my daughter came by and reminded me that the last time I tried doing the bath, washing the hair and drying it..... I collapsed the same way the NEXT day! Sad to say she remembers it but I don't! It's certainly a help knowing your not the only person in the world this is happening to....

If there is anything I can do, just say the word. I have an upside down sleep cycle, so I'm probably on Alaska time! because I am awake most of the night in Central time! If you lie down, does the attack get better?

Yes, me too! When I first got sick they were awful. Effexor 75 mg helped me. Sure sounds like adrenaline surges. Do you have a good doctor?

I have that happen sometimes too. I have to sit to shower and wash my hair and by the time I'm finished - I'm shaking like a leaf and nauseous and totally wiped out. I have to make sure I don't get the water too hot and also do my hair in stages - because using my arms overhead will get me. Hope tomorrow is better for you.

Issie

Yes! I don't know what got into me to do both. I know better. You would think after 9 years I would have learned wouldn't you?!

I feel so dehydrated and scared. I have had plenty of Gatorade today. I took a bath and washed my hair last night and I woke up feeling like death warmed over. I just don't know what to do anymore.

Hang in there and take it one day at a time - sometimes, it may be one minute at a time. (((((Hugs - to you))))))

Issie

I appreciate that so much Issie! Sorry, I didn't mean to hijack the thread..... I'm now able to roll over and type, so that's an improvement, The only thing I can think of is I took a bath AND washed my hair last night. Maybe this is the aftermath of that.... it's all so crazy!

why dont they study this anomoly more?

Bren

Im the same a lot and if its any help to know, most of the research going on at Vanderbilt is looking at the renin/ald paradox, blood volume and two on kidney dopamine and salt handling in POTS.

Would that fit my low renin/low aldosterone results?

I've had this strange thing happen twice. It's been going on for a week and I also had it for a week in November. I'm generally always thirsty since having pots and I pee frequently. However, twice now I've had these weeks where the thirst is extreme, but I'm also extremely dry. I'm so dry all over, my skin is rough and dry, my eyes are dry, bloodshot, and burning, and my mouth and lips are dry. Basically every mucus membrane is dried out and I'm more thirsty then ever in my life yet no amount of fluids will satiate it. Also, I'm peeing every thing I drink out and my pee is clear. I have tried increasing salt and it doesn't help. I've been tested for DI so I know it's not that. I'm also negative for Sjogrens. What could possibly be drying me out so bad. It is awful. When this happened in November it just suddenly stopped after about 4 days. I'm going to the doc this afternoon what should they test for?

Oh.. I just read this. It's exactly how I feel tonight to the extreme. I can just lay here barely able to type. ...dying of thirst which I can't quench. One of the worst days I've had when I am lying down.

I feel so dehydrated and scared. I have had plenty of Gatorade today. I took a bath and washed my hair last night and I woke up feeling like death warmed over. I just don't know what to do anymore.

My abdominal CT scan showed 4 very large hemangiomas. Three in my liver and one to the right of the liver. I am wondering is that could have anything to do with nausea when sitting up if blood was pooling in my abdomen. Does anybody else have hemangiomas?

I remember someone on the forum doing a study a couple of years ago about the different climates, barometric pressures, etc. as triggers for symptoms.. It was pretty amazing, because there were so many different answers of where every one was their best. Mine was being in the the salt of the ocean in the humidity of South Florida. Somehow the salt water makes me better. That's crazy sounding isn't it?

Also, Google has a new tracking mechanism that is (I believe) part of the controversy of their new privacy terms. The new policy being where it (like Facebook) keeps all the info of where you go and what you do on the internet.

Very interesting. Does that mean my pathway is my neuroendocrine system?

That is GREAT news! My son lives there!

That is so interesting! I don't know why I thought everyone had the fatigue. My doctor explained to me that my fatigue is caused from the constant up and down of my HR and BP. When I was little, I used to faint a lot. Then lived a fairly normal life until 2003 when I woke up one morning and out of the blue I was struck with this unrelenting fatigue... hardly able to make it to the kitchen that day. Crushing fatigue even after a solid 10 hours of sleep. An endocrinologist measured my aldosterone and renin first while lying in a quiet room and then when standing up. Both aldosterone and renin were low. I did ok (off and on) until 2009 when I was driving home from work and got a terrible headache and nausea which they FINALLY pinned down on my HR which was 166 sitting down... very disabling unfortunately.

Also low renin and ald is associated with low flow POTS.

What's this one? Low renin and ?

I know CFS has some carryover with POTS, however in my personal case I don't really suffer from fatigue during the day so I don't know how applicable this is to me. Still, I wonder if there's been any studies about antioxidants for CFS patients?

Oh my!! You don't have the fatigue? Count your lucky stars on that! Is it because your HR and BP are controlled?

Thanks, McBlonde - very interesting. I am thinking I may need to have my thyroid function checked, since on another online group someone suggested to me that some of my symptoms may be consistent with hypothyroidism.

You're welcome! Low Vitamin D3 is also being found in pre-diabetes, too. Here is the list of symptoms of low vs high ...

http://www.goodhormonehealth.com/symptoms/gland_hormone_symptom_table.html

Oh... I remember that being posted. Let me see if I can find it on Google.

I don't know if this information helps but I have very low Vit D 3 and my doctor said that the majority of endocrine patients do.... paper he wrote on it.

http://www.goodhormonehealth.com/VitaminD.pdf

But, there is also a connection in the renin/aldosterone deficiency - if they are both low - people are not supposed to increase their potassium and spirlactone does increase potassium. I guess, you'd have to see if with this deficiency you are holding onto too much potassium before you'd try this drug.

Makes allot of sense - because so many of us do have autoimmune issues that we're dealing with. And speaking for myself - I think my whole body is one big oweee and I do have EDS.

Thanks jangle, for all the research!

Issie

That's so interesting, Issie. You're the first person who've I heard had the same thing as me....low aldosterone and low renin. My endocrinologist says that nearly all endocrine patients are low in Vitamin D3. He prescribes 50,000 units once a week for 8 weeks and then have your D3 rechecked.