TXPOTS

Oh goodness... I am so sorry to hear about your frustrating appointment. I have had a few of these demeaning appointments before being officially diagnosed with POTS. My only advice is to turn around and never look back. Put this appointment out of your head and be persistent in your quest to find a doctor who stays more current on the latest POTS research. It is NOT you, it is him. Hugs!

Unfortunately, the withdrawal symptoms can hang around for days or even weeks after the drug is out of your system. Plus, the half life is 19-50 hours in adults. So, think of it this way, if the half life is 20 hours in your body. Fifty percent may be out of your system in 20 hours, 25% in 40 hours, 12.5% in 80 hours, etc.... It changes your brain chemistry (GABA system), so the brain must adjust back. Each patient is so different. Some patients have absolutely no trouble with relatively quick tapers, while others really need a slow, tedious taper. The two biggest factors are dose and how long one has been on the drug. I would not continue to cut the dose down further if I was experiencing bouts of anxiety/ adrenaline surges. Don't hesitate to relay what is happening to your doctor if this continues. The official statement per manufacturer and literature is that patients with anxiety do not develop a tolerance to Klonopin over time. However, I have had several patients tell me that they have noticed a decrease in effect over time, and as an anti-seizure medication, Klonopin does lose effect over time. I certainly believe these patients. It's really a individual patient thing. I, personally, have not developed tolerance over a year. In fact, I was able to cut back on the Klonopin to 1/3rd of the original dose after we started treating my POTS. However, I have not been able to come off completely, but my POTS is still here, just not as severe. Hugs! I hate the adrenaline surges. I have hypovolemic and suspected neuropathic POTS, and I still get these awful surges. They are so miserable.

I'm a pharmacist, and I take Klonopin for my POTS. I fought the adrenaline surges for awhile and finally caved and started taking Klonopin after a bad reaction to SSRIs. I also tapered myself down to the lowest effective dose that I can tolerate without the horrid, adrenaline surges. For me, this is 0.125 mg in the am and 0.25 at bed time. There are 3 possibilities I can think of: 1) This is just withdrawal and will pass. It may take awhile because Klonopin has a very long half life. 2) You tapered a little too quickly. I cut my pill into fourths. I cut down by a fourth of a dose per day every two weeks. This is a slower taper than most physicians or the drug manufacturers recommend, but many benzodiazepine experts recommend a more gradual taper depending on how long you have been on the drug. 3) This is a re-emergence of your old symptoms.

I absolutely agree! I think it is a form of transient or postural diabetes insipidus brought on by lack of blood flow to the hypothalamus and pituitary. I have had ADH measured several times (I know it is a dodgy test, but the hospital labs were running it, so it should be correct) and I never even registered as having any (always below the detectable limits!) This was with a serum Osm of 304! I have alternately had the posterior pituitary hyperintensity on my MRIs. I think that sometimes we make it and sometimes we don't. POTS definitely effects the HPA/HPO axis, they just haven't looked that deeply into it. Most of the research has been on the cardio side. There is a new test coming out this year for measuring ADH that should be far more accurate so that we will KNOW if it is DI or pseudo-DI. Very, very interesting indeed. My ADH levels have also come back undetectable, and this was at the end of the water deprivation test. However, I swear the severity of my DI changes from day to day, which should not happen with full central DI. I'm glad to hear there is a new ADH test coming up this yea. Keep in touch Charmed and Firewatcher, so we can compare notes. It's so interesting how many of us have these odd ball, overlapping symptoms.

#2 or 3, because they clearly show the awkward squatting position we must resort to in public

I can not imagine having to undergo a 24 hr salt fast and 12 hour water dep test outside of the hospital. My water dep/ salt fast was done in the hospital under close supervision. I was dying at the end of the test for water and salt. They gave me IV fluids and DDAVP before leaving, which helped tremendously. Just to add.... Look into the renin-angiotensin-aldosterone system. There is a good, basic diagram on wiki. If your renin is low, angiotensin and aldosterone will be low. This system is partially responsible for triggering the release of ADH from the pituitary. We are in uncharted territory, but I believe they are finding more and more POTS patients that have low output of vasopressin. It's not the classical central diabetes insipidus, but a diabetes insipidus like syndrome. The closest explanation I have gotten is sympathetic denervation of the juxtaglomerular apparatus in the kidney which causes dysfunction of the renin-angiotensin-aldosterone system (also known as the renin-aldosterone paradox). The Florinef did help my urine output, but I still do best with small doses of DDAVP. They can do a specialized MRI of the pituitary to check if you have the pituitary flare. If this is present, this means there is vasopressin there. In classic cases of central DI, this flare is missing. I had the "flare", so it's not that my pituitary and hypothalamus are not producing the vasopressin, but that it is not being triggered to release. We have to be careful with the DDAVP. I found out the hard way when a doctor put me on DDAVP without Florinef. I went into hyponatriemia and ended up in the hospital for 3 days. We need both the salt and the water, so it's best to start with Florinef, as you are doing. Best of luck with the endo. I hope these POTS researchers continue to search for explanations. We are very much alike!

Just a quick chime in about the Florinef. I'm a pharmacist (non-working due to POTS) and take Florinef. As much as Florinef helps many of us with POTS, it can potentially increase irritability and anxiety. I must take my dose first thing in the morning, or I am tossing and turning at night. I have waves of terrible anxiety FROM my POTS. I would describe these waves as feelings of impending doom. I never had issues with anxiety before POTS. I have to get in a zone and gradually the feeling passes, but it can be downright miserable. My urine output was also 6 liters in 24 hours. I see an endocrinologist who diagnosed me with low renin, low aldosterone, and diabetes insipidus during a water deprivation test. I have to take both Florinef and DDAVP. If your urine output is that high, it may be worth inquiring about a urine and serum osmolarity to rule out diabetes insipidus.

Many, but certainly not all patients with orthostatic intolerance are hypovolemic. Measures like increasing salt consumption, drinking copious amounts of fluids, elevating the bed, an exercise regimen and some medications are aimed at increasing or maximizing blood volume per my POTS physician. I wouldn't hesitate to call and ask if you want to know your doctor's thoughts.

This is one speculated way of increasing blood volume over time. They will also tell you to try to rest in a recliner, rather than spending time in bed. Prolonged bed rest can cause orthostatic intolerance in otherwise healthy individuals, so if you have hypovolemic POTS, it's best to avoid lying flat during the day unless absolutely necessary.

Good thought. My periods have been regular, so I assumed all was ok, but the bladder pressure seems cyclical. I better have this checked. Many thanks.

Thanks for the responses. I initially saw an ob/gyn who referred me to the urologist. It seems very isolated to my bladder. It is especially bad right after I eat or the more concentrated my urine is. If I back off my Florinef, salt and stop the DDAVP, my bladder is better (not perfect, but better) which then causes my POTS to act up more. It is very, very frustrating. From my own reading, it sounds most like interstitial cystitis. I am just so darn frustrated. Everything, medication wise, that I try to take for my POTS causes another unbearable side effect. I have also tried clonidine and Midodrine. I had bad reactions to both of those. I will look into the Cyamalon. The urologist wants me to go under general anesthesia and have a cystoscopy to check for IC. It seems to be med related, so I really am against doing this due to the implications of general anesthesia.

Yes, they numbed my back, then put the needle in to withdraw some spinal fluid for testing, then they put in dye and did an extensive scan of my spine and brain. It was a top facility and they were very thorough. After that, they sent me to the recovery room for a few hours. The funny thing is that was the last time I felt good. Now I realize why......it was the IV I was getting in the recovery room. I forgot to add before, along with the pituitary problems, I also have low normal aldosterone and very low renin levels. Mine was .32 and normal is 1.9 to 3.7 ng/mL/hour. I think that's why I am so thirsty. Even though I drink 2 L of water, 3 bottles of Gatorade and other fluids daily, the problem with the renin keeps my body from being able to hang onto the fluid. How do they diagnosis hypovolemia and do you know if Dr. Suleman does that testing in his clinic? Thanks for your help and encouragement! I think I've met another version of me... lol. I was the same way. I always felt better after receiving IV fluids in the hospital, but I would spiral downwards at home. It's nice to meet someone who has the same type of headaches. My aldosterone was undetectable with barely there renin levels. If you were ON Florinef when they tested you, these levels would be low anyways. Hopefully, they drew the levels before they put you on Florinef. Dr. Suleman figured out that I had hypovolemic POTS based on my history and the testing he did. I was very ill when I was there, so I went in the hospital a couple days and received IV infusions of saline (and albumin). The difference in my blood pressure and heart rate was dramatic. After I got back home, I found an endocrinologist who performed the renin, aldosterone and water deprivation test for diabetes insipidus. I then started Florinef and DDAVP. I am doing better now, but I am still stuck at a 5 (on a scale of 0-10). Like many POTS patients, I've had side effects from other meds they have tried. The newest issue is my bladder is acting up. They think I may have interstitial cystitis, possibly from all the salt I have been ingesting over the past 3 months or the increased concentration of my urine from treatment. It's a big IF though. Dr. Suleman does all the testing there. Whatever the case... what you have, I have. I wonder if Dr. Suleman can come up with a plan for the headaches for both of us. You are describing exactly what I have been through with these headaches.

Did you have a CT myelogram? I see you have low pituitary hormones. Do you also have diabetes insipidus. I assume not if you only drink 2 liters/ day, unless you are on DDAVP. It's really hard to differentiate between hypovolemic POTS and a spinal leak. Sometimes spinal and cranial leaks are hard to detect, and it is now being documented that they can cause autonomic dysfunction and pituitary hyperemia. However, you have had orthostatic hypotension for years before these headaches and a negative work up for a spinal leak already. I was like you at one point, and I gradually was able to be upright in a bed and then in a recliner and now for several hours off and on during the day. I found the more and longer I was down the worse I got, but if I pushed it too much, the headache could get horrendous. In the end, we learned I was severely dehydrated. Maybe it's time for an autonomic specialist to get you over this hump and evaluate your volume status. If you are hypovolemic, there are more options than just the Florinef. I know it's frustrating. I had the nausea too at one point. I really, realy do sympathize. Better days are ahead.

I just wanted to sympathize with you. Orthostatic headaches have been the absolute WORST of my POTS symptoms. I find that instead of lying flat (which can decrease blood volume further over time) I can lean my head back in a recliner or rocking chair. The headache then goes away, but it is really, really awful. I still can't shake these headaches. I was initially misdiagnosed with a low spinal pressure headache, but finally was redirected by a world renown spinal leak specialist to my correct diagnosis, hypovolemic POTS. Dr. Suleman, in fact, explained that low blood volume to the brain can cause these headaches, as well as tension. Some POTS patients tend to tense up when upright. Hugs. Hopes for a better week.

There was one study that linked XRMV to CFS, but 2 later studies failed to show the connection. There are many, many theories and no definitive answers yet. I agree that CFS patients should definitely not be giving blood anyway. I have hypovolemic POTS, and I feel terribly ill when doctors order multiple tubes of blood! Interesting topic. We need more solid research.... more studies with a decent number of patients published in reputable journals.

YES, I was misdiagnosed with a condition called intracranial hypovolemia from a spontaneous cerebrospinal leak due to my orthostatic headaches (and all the other lovely symptoms that accompany my real diagnosis, POTS). My spinal pressure was unmeasurable at 2 different institutions. I underwent over 30 blood patches despite the fact that a leak was never visualized, and I did not have pachymeningeal enhancement on a brain MRI with contrast (a positive finding in 80% of csf leak cases). Later, after many failed attempts and 2 years lost, it was determined that I had severe hypovolemic POTS. Low blood volume or a state of dehydration can cause low spinal pressure. These syndromes are hard to differentiate. As the above poster mentioned a good neurosurgeon or neurologist can order a brain MRI with contrast. There is also a T2 weighted MRI that can detect some leaks. This technique is less invasive than a myelogram which requires another LP.

Thanks for the welcome and reply. I don't have many of the MCAD symptoms, but that is a very interesting correlation. Gosh, I hope it is not IC, but that seems to fit best. I do not want to have to undergo general anesthesia as my POTS is not particularly stable. Oddly, the DI seems to come and go. The severity fluctuates as does my POTS. I am in a phase where I seem to have fluid on board because my veins are full and huge. I went for 2 years with shrunken veins. I am trying to figure out if the bladder issues are related to my meds, fluid status, or more likely, IC. As we all know, lack of sleep, is so bad for POTS, and this bladder pressure is making life difficult.

Dr. Suleman officially diagnosed my POTS. I agree with the above poster. He and his staff are definitely compassionate. I wish that I lived closer, so I could take advantage of the PT consultations, dietician, and other services. He diagnosed my POTS, but he recommends follow up and treatment in your hometown, which can be a challenge since there are so few physicians that understand POTS. I would recommend him for an accurate diagnosis and autonomic testing.

I was finally diagnosed with hypovolemic POTS after 2 years of being misdiagnosed. I have the very low renin, aldosterone, and partial diabetes insipidus. The DI is central, but not due to lack of ADH in the pituitary. It is thought to be neurologic due to denervation of the kidney and lack of triggering of the renin-angiotensin- aldosterone system which has partial control of the release of ADH from the pituitary. My regimen is Florinef, DDAVP, salt, and exercise. This has brought me from being totally bedridden to about a 5 on a scale of 1-10. In arrives another problem.... After being on the meds for 3 months, I have developed this annoying bladder pressure. My DI appears to fluctuate. I am seeing a urologist who has no idea what this is. I am on potassium citrate to see if alkalinizing my urine helps. I have also cut back on the salt until we sort this out. I will move on to treatment for overactive bladder if the potassium citrate doesn't help. As a last resort, they will check for interstitial cystitis which the urologist said involves general anesthesia. No thank you! I do not think this is related to my POTS. I have had this for 2 years and never experienced this bladder pressure. I do not have a UTI. It seems to be worse before my period. The bladder pressure started 3 days after I started taking DDAVP during the day. Any ideas? Anyone experience this? It feels like someone is stepping on my bladder, and I have to pee, even when my bladder is nowhere near full. I suspect it has something to do with the meds, but I am not sure which one or why. I'm a pharmacist, and I still don't have a clue, along with my urologist. I am interested in any thoughts, suggestions, or motivation to get past this latest set back! As if having POTS wasn't bad enough!