TXPOTS

Awesome news. I have also noticed that when I roll with my symptoms, rather than fight and analyze everything to death, I seem to feel better. Not cured, but I feel better. I hope you have turned the corner.

As a patient with POTS, the biggest obstacle I have come across is lack of knowledge of the disease by the medical community. I live in Houston. We have one of the largest, most renowned medical centers in the county. How many POTS specialists are there? Zero. I was initially misdiagnosed and had to travel across the county to get a proper diagnosis which came over a year after my initial symptoms. I am a very classic, cut and dry POTS patient (poster girl) who displayed typical symptoms many times during multiple physician appointments and hospitalizations. My husband and I work in the medical profession and have relentlessly tried to encourage electrophysiologists in the area to learn more about the disease. I find physicians very insecure about treating a disease they know little about. I don't think POTS is that uncommon if 1/100 teenagers becomes afflicted with POTS. I believe there are more patients out there that have this condition, but do not have a proper diagnosis. As awareness in the medical community increases, I believe we will start to get better treatment and generate more interest.

Sertraline=Zoloft= SSRI The SSRIs have been of help to some patients. Interestingly, all the SSRIs and SNRIs (example Cyambalta), have tachycardia listed as a possible side effect. Some POTS and IST patients find improvement on these medications, so the only way to know for sure is to try and watch for improvement or worsening of symptoms. I believe they are hypothesized to work by re-equilabrating the autonomic nervous system. I don't think the researchers are absolutely sure why they work in some patients.

I agree. I did not find the excessive salt consumption without Florinef helpful. I started feeling better after starting Florinef. I still consume a salty diet, but not the massive amounts I was instructed to take before Florinef. Plus, I think the excessive sodium gave me interstitial cystitis. I had to see a urologist who had me cut down on the salt from 10gm sodium/ day to 4gm sodium/ day.

From Raj's article: Patients with orthostatic tachycardia who were also hypovolemic have low levels of standing plasma renin activity and aldosterone compared to normovolemic patients [21,22]. Of course, not all patients with POTS are hypovolemic. Hypertensive patients and patients with CHF tend to have lower renin and aldosterone as a compensatory mechanism to decrease blood pressure. Even POTS patients who do not fit into the hyperadrenergic category, have higher levels of circulatory NE. Perhaps this is compensatory due to selective peripheral denervation. Researchers are still debating. At any rate, vessel constriction at the level of the kidneys would reduce renin secretion. Our bodies could think we are hypertensive, and therefore, the low renin, low aldosterone despite hypovolemia. Fixing the hypovolemia may help, but does not address the root problem. I had my renin and aldosterone tested during a water/ salt deprivation protocol in the hospital. It was not pleasant, but it was an accurate way of obtaining results. The Florinef and DDAVP have helped, but I still have POTS. In a non-POTS or POTS patients without hypovolemia from low aldosterone, if they ingest salt, aldosterone will naturally drop. In a hypovolemic POTS patients who is consuming normal amounts of salt, aldosterone is low to begin with. Many POTS specialist recommend the high salt diet because aldosterone is already low, and these patients need the extra salt. The only way to know is to have renin and aldosterone tested after a sodium fast under the guidance of a qualified doctor who is familiar with POTS. Sorry to butt in.... I am always game for a renin/ aldosterone discussion, since I've been affected by this issue.

I have too many lipomas to count. I'm very thin. My father has the same thing, so I assume it is genetic in my case. New ones pop up every few years. My father had one removed because it was pushing on his rib cage and causing irritation. The haven't bothered me in the least. I really have never given them a second thought.

Thanks for the shout out, Issie. Goodness, no wonder you are in benzo withdrawal heck. 10 mg of Valium (diazepam) is equivalent to 0.5 mg of Klonopin (clonazepam). You must be miserable, poor thing. How are you feeling now? Different physicians have different tapering protocols, but as a pharmacist and fellow Klonopin user, I find it best to taper very slowly. The half life of Klonopin is long (24-72 hours) , and it can take 5 days of therapy to reach a steady state. When I reduced my dose from 0.5 mg bid to 0.125 in the morning and 0.25mg at bed time, I reduced the dose by 0.125mg every 4 weeks. This is way conservative, but I still experienced mild withdrawal symptoms. I think with POTS benzo withdrawal is especially difficult because we live day in and day out with high adrenaline levels. Well, now you know the dangers of benzo withdrawal. Live and learn. Honestly, it is a blessing that you did not have a seizure (one of the worst consequences of severe benzo withdrawal). I hope you are feeling better, but give yourself time, and do not reduce the dose further while you are having withdrawals side effects. I would let your physician know what happened. You may be able to map out a better plan and dose strategy. Best of luck!

Hi Sarah, Gosh... where to start. As you know, POTS is incredibly disabling. I don't know if this will help you in the least, but I still find it comforting that POTS is not a fatal condition. As awful as I feel day in and day out, I remember my young friend who passed from breast cancer last year on Halloween. She had 2 little boys the same age as I mine. I think of her, and it gives me the strength to persevere and look on the bright side. I was in the hospital at the time with severe POTS symptoms. I am incredibly sensitive to smells, lights, and especially sounds. You are not alone in that respect. I feel as though the volume knob in my world has been turned up to the MAX, and it stuck in this position. I also can not handle very normal levels of stress, and I have a terrible startle response. I do want to give you hope. I had very severe POTS. I was in the hospital 5 times in 2009. My husband had to assist me to the restroom and with baths. Today I exercise 2 hours/ day. I still have moderate POTS, but I have found that exercise and movement actually ameliorates my symptoms. I still can't sit straight upright for long and have to move around while standing, but I feel like I have made progress. I so agree with Issie, try to sit in a recliner, and do not lye flat in bed. It's about finding what works for YOU and taking it one day at a time. I never in a million years thought I would be able to exercise for the length and intensity that I do. I think it's quite atypical for POTS. There are certainly remissions and even people who do not make full recoveries gain a great deal of functionality over time. I have found it is better to stay positive, but not to despair when I have a bad day or week. I got this from another poster, and it stuck in my head... The only thing certain about POTS is that POTS is uncertain. OK, which one of you said that? My first bout of POTS was moderate and triggered by heat and dehydration. I did not know at the time that I had POTS. I had no idea why I felt awful for 6 months. My second bout has been severe, but I have made progress. I suspect it was triggered by a severely stressful event. It's interesting that many posters have noted that POTS started after a stressful time in their lives. I have always wondered about this. I am also on Florinef. I can handle only 0.1mg. It is smart to "start low and go slow". Yes, I think even a small dose can help and effects should be cumulative over time. Hopefully, you will get more guidance when you see the dysautonomia specialist. Best of luck!

I'm sorry, Issie, that sounds miserable and frustrating. The blood is obviously in the wrong place at the wrong time. Have your doctors ever suggested octreotide? Just curious, it primarily constricts veins in the abdominal area. I know there is at least one ongoing trial. Do you tolerate drugs that constrict your vessels? I think I remember you mentioning having EDS, so perhaps floppy vessels.

I have heard various sources recommend 4-10gm of sodium/ day, but I would definitely run this by a physician, because everyone is obviously different. I take Florinef, but I know other patients have tried licorice. Do you mean get the water to go in the vasculature and not other tissues? I had an infusion of normal saline and albumin that would accomplish this, so there may be infusion centers that offer this. Albumin keeps fluid in the vasculature, but it must be repeated for long term benefit and is expensive. I was a shriveled prune, not a water balloon, so we sound like we have different mechanisms at play.

But what if you were spilling sodium and not using extra salt or on meds? Then, water would follow sodium, and you may become hypovolemic. This, personally, happened to me. This could be why many patients will POTS have lower blood volume than control groups.

So, you could spill sodium into your urine, even IF you hadn't upped your salt intake or been on Florineff if your renin and aldosterone were low? I wasn't doing the extra salt or meds when tested last. Thanks for explaining!! Hi Issie, If you were upping sodium consumption (without taking Florinef) and had low renin and aldosterone, you would be spilling a considerable amount of sodium, but, hopefully the sodium would build in your system over time, despite excess spilling. With Florinef, your body will retain sodium, and the dose of sodium and Florinef would be "tweaked" to find a perfect balance between too much sodium retention leading to high blood pressure, swelling, and headaches or too little Florinef where one would still be spilling excess sodium. Your results should be accurate if you were not on meds and sodium when tested.

I meant to say that POTS patients are spilling sodium in their urine due to low renin and aldosterone. I can't figure out edit on these new boards

If a patient without POTS were to increase sodium consumption, then aldosterone production would decline to allow the excess salt to be excreted in the urine. In some POTS, patients are spilling sodium in their urine despite low renin and aldosterone levels to begin with. If aldosterone levels are low to begin with, the added sodium in diet is not going to have a clinically significant effect. Florinef replaces aldosterone, so this will obviously decrease aldosterone levels, but again if the levels are low to begin with than supplementation may be necessary. Ideally, a patient should not load up on sodium and be off medications that may alter aldosterone levels before a blood test for renin and aldosterone.

Thank you Rama. This makes sense in my particular case because they have determined I have increased peripheral resistance. I appear to over-constrict. They are postulating this may be why my RAAS has shut down. I failed a trials of clonidine, L-arginine, and nitroglycerin. My blood pressure fluctuates from low/normal to high, which makes this hard to treat. I have a prescription for losartan, but I am afraid to try it because my renin and aldosterone were very low (measured pre-Florinef). My angiotensin II is already low/normal. I have only been able to tolerate 0.1mg of Florinef, else I am too wired and my bp shoots up. Balancing POTS is for the birds. I greatly appreciate everyone's comments and support.

A puzzlement indeed. Chaos, have you found an effective treatment plan? They also measured my CO2 emitted during my TTT, and it was high. The PA and technician who performed the test said I did not appear to be hyperventilating. I was trying to calm myself by taking slow, deep breaths because I started to feel panicky on the tilt. I didn't last for more than 10 minutes, which was better than the 6 minutes I lasted back in December. No more tilts for me.

Regarding hypocapnia... Well, that's what I initially thought, but my POTS doc claims he has only seen this result once back in the 90s (a high RQ that normalized with exercise). He performs many of these cardiometabolic stress tests on POTS patients. His staff also claimed that I did not appear to be hyperventilating. I do not breath rapidly to my knowledge, but I may be breathing too deeply. I swear there is something OFF with my breathing when upright. Would breathing too deeply expel too much CO2? I have no idea whether the cardiometabolic stress test measures rate or depth of respiration. Regardless, I'm going with the hypocapnia theory because it makes the most sense to me. Stewart's research suggests that this is a common finding with POTS, so I am baffled why my physician does not routinely see this. I lost faith when my physician was unable to interpret the result and told us to find a pulmonologist who knew what it meant. Well, that has been totally unsuccessful. I guess there is nothing more to do with this other than except it as part of POTS? I looked into an impedance type breathing apparatus that may help OI, but it looks like it is only designed for emergencies and orthostatic hypotension. It requires a prescription. Thanks everyone!!! You guys are wonderful when I have a difficult question.

Dianne, That's very interesting indeed. Thanks for posting. I am being referred for some possible metabolic changes that may be from hypoxia or vice versa. I will be interested to see if PET/SPECTs are used more for research purposes or to diagnosis POTS.

I've had MRIs, MRVs, and MRAs. They have all been completely normal. I have not read any research suggesting brain abnormalities/ ischemic changes are typical in patients with dysautonomia.

I have trouble with this as well and had an abnormal response to Valsalva autonomic testing. A Valsalva manuever or anything (like deep breathing) that increases intrathoracic pressure reduces venous return to the heart. Blood naturally flows from a high pressure gradient to a low pressure gradient.

[i have had no adverse effects to adding weight resistance, though I was very, very weak at first and started with light weights. I also started slowly on the recumbent bike and progressed to cross training and jogging. I have found the rowing machine very comfortable, probably because I am in a seated position. I should have graduated from the recumbent bike to the rower rather than going straight to jogging.

You are describing me to a tee!!!! I also have the seat reclined in our vehicle. The ADH should be run at the peak of water deprivation, and in that situation it should be above zero. If you have POTS, he/ she should also run a renin and aldosterone to make sure that you can properly retain sodium since the side effect of DDAVP is hyponatriemia. I have to take the Florinef along with the DDAVP and wait until my urine turns colorless again between doses. The tablet is less potent than the nasal.

I can not comment on the calculation, but a higher osmo is a typical finding with diabetes insipidus. I take it you are not on DDAVP? Are you the gal who spends the day moving between recliners? I thought you wrote this in a post, and I can really relate, because that is so ME. I can exercise, but at home, I am in trouble if I am not moving and spend my time up and down between recliners.

If you have serum osmo taken make sure the lab uses a direct measurement machine. Some lab/ physicians do not have the technology and run the calculations by hand, which is not as accurate.

Thanks firewatcher, I'll give it a read.