TXPOTS

I just wanted to resurrect this post because I am looking at POTS and exercise in a new light. Dr. Levine's team was kind enough to give me some tips. I was starting to question whether I would make any more improvements and feeling yucky from the hot weather. Over the last week, I am feeling better than when this whole nightmare started 2 years ago. Yesterday I was able to be up all day and play with my kids. It was heaven! The type of exercise makes a huge difference!!!! I don't think I was ever deconditioned, but my body needs a certain kind of exercise due to genetic variation. I'm not saying his treatment is for everyone, but it is making a big difference in my life. I am still on medication, so I am using a mix of Dr. Levine's methods and my own POTS doctor's suggestions. I think I have been over-analyizng all the studies and various sub-groups. Now it's time to relax, have a more positive attitude and strive for a more normal life, and let the researchers battle in out. If you are on an exercise program, I would advise staying positive and not let posts like MY former posts and rants discourage you. Dr. Levine's study should be coming out soon, and I hope it helps many patients.

Simmy, I assume you just take the DDAVP before bed and consume lots of salt? Thanks for posting. This was me 6 months ago every day. My veins get full after DDAVP, but I must take Florinef or my sodium levels get too low while on DDAVP.

I'm in agreement with this theory. My NE levels upon standing were 1089, and my local cardio thought I'd benefit from clonidine. I couldn't even tolerate 1/8th of the normally prescribed dose without my BP plummeting (and it normally rises with upright posture). So yes, in my case the elevated NE levels were a healthy, compensatory reaction to pooling. I am on the tail end of 10-day trial and taper off of the clonidine. Prior to clonidine, My blood pressure had been running high when upright, and I was experiencing the adrenaline surges many of us are so familiar with. I noticed the clonidine took away the symptoms of the adrenaline surges, but my primary orthostatic symptoms (headaches, coat hanger pain, brain fog, dizziness, and fatigue) were worse. I'm feeling better now that I am off, but I'm glad that I gave it a go. I know clonidine benefits many POTS patients, but it wasn't for me either. My new plan is to hit the gym and rowing machine to try to strengthen my heart to maximum capacity. I do pretty well with exercise, but the sitting or standing without aerobic activity is torture. I am grateful for the Florinef and DDAVP, but the other medications have been a bust, so on to more non-pharmacological methods.

Or just the bodies natural compensatory mechanism to getting blood to the brain and other critical organs when blood is pooling down south?

The catecholamine level is definitely not a requirement for a POTS diagnosis. It is just an inclusion criteria for some of the recent POTS studies at Vanderbilt, not a diagnosis. I venture to guess that these levels vary from day to day in POTS patients anyway.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/ For some on Vanderbilt's current studies on POTS, an inclusion criteria is a NE > 600 pg/ml. The article I pasted above states the "hyperadrenergic" group often has levels > 1000 pg/ml. So, by this definition, you would not have the hyper sub-type. I have no idea what levels are in the normal population.

I wrote somewhere about getting a rowing machine yesterday. I too was surprised by my weak abdominals and upper body. But my legs are, and always have been strong. I noticed my legs are fine when jogging, and they held up fine when rowing today (upper body was a different story). However, when I moved to the leg weight machines, I noticed I had lost quite a bit of strength when comparing myself to 3 years ago on these same weight machines. The funny thing is shortly before I got POTS I had stopped doing my regular stair master and weight routine and shifted to a heavy swimming routine and jogging. I wonder if it's not so much how much you do if you are predisposed to POTS, but the type of exercise???

I am trying something new and adding rowing and weight training to my regimen. We joined a gym today. Boy, despite being able to run so far and do my recumbent bike for so long at home, I was astounded by how weak I really am. I have no upper body or abdominal strength. Excuse my former posts about not being deconditioned. I completely proved myself wrong today.

For those on clonidine, how long did it take before you saw an improvement in POTS symptoms? I have noticed my adrenaline surges are gone, and my blood pressure, which was running high when upright, is back to normal, along with my heart rate. Unfortunately, I have not seen an improvement in my main orthostatic symptoms (coat hanger pain, headaches, dizziness, and fatigue). As a blood pressure medication, clonidine works within 30 minutes, but I realize there may be a different timeline for POTS.

Last July my husband and I flew out to LA to see a cerebrospinal leak specialist. I was originally misdiagnosed with a CSF leak because the symptoms for both disorders are similar. Anyways, I could not believe how much better I felt in LA. I felt so much better that I decided my "leak" must be sealing itself, and we flew home without further exploration of a spinal leak. I got worse back home and ended up seeking more treatment which led me to my true diagnosis of POTS. I noticed a major change going from hot, humid July Houston to dry, cool, sunny LA. We can not afford to move there at this time, but I noticed a significant difference. Not saying everyone would, but I did.

I also thinks it's a misconception that because you can exercise your POTS is not that bad. I can run, but I can not make dinner for my family or sit up at a desk. I use a lap top in a recliner. The standing kills me, but I am better when moving, the faster the better. Forget accompanying my families to restaurants, getting my hair cut, etc..., The movement or increase in heart rate must get more blood to my brain.

Kexia, Yes, taking Florinef will artificially lower aldosterone and a beta blocker will lower renin levels. You can differentiate between POTS related low aldosterone and Addison's by performing a Cosyntropin stimulation test. I saw an endocrinologist for these labs. Like firewatcher said, your ANS testing may have been enough to direct therapy. I really needed these labs. I was clearly hypovolemic and need of further studies in addition to ANS studies. Just a side note for tearose... I don't advocate drugs for all POTS patients. My point was that in an ideal world it is best to find the underlying cause, if at all possible, before embarking on drug therapy and throwing drugs at patients until one seems to stick. I don't know what you are disagreeing with or where I said all POTS patients should be medicated. This thread is not even related to drugs. Just for the record, most pharmacists I know try to avoid taking drugs. It's a misconception that pharmacists are drug pushers. I think you misunderstood the point I was trying to make which was the medications for POTS often have different mechanisms of action, so POTS patients are a heterogeneous group and patients should be individually treated.

I'm with you. I run 5 miles every day and ride my recumbent for an hour. I know this seems excessive, but I was very physically active when POTS hit. It is part of my self identity. Plus, the only time I feel good is when I am running. The movement almost eliminates symptoms. I am horribly symptomatic otherwise. I can not sit without leaning back or stand for long without the POTS symptoms. I am homebound, aside from my jogging jaunts. I agree with your point. Exercise certainly helps, and if possible, we should avoid a deconditioned state.

Im pretty sure angiotensin II catabolises in half an hour - so it would probably need to be measured on tilt. Actually, Ang II was measured supine, NOT on a tilt in Dr. Stewart's studies. This is the Quest lab that ran my test, so I am confident in my results. The sample must be frozen. I think the point is these patients had very high ang II, even when supine. Up to 200 ng/ml. In the control group the levels averaged 32 ng/ml. Mine was 13 ng/ml. From Dr. Stewart's article. Following a 30 min equilibration period, venous blood for assay purposes was collected from the catheter in the antecubital vein with subjects supine. All assays were performed by Quest Diagnostics Laboratory (Nichols Institute, San Juan Capistrano, CA, U.S.A.).

That's what I'm trying to do. I need a direction to start looking so I can figure out what to try next. I know I get pooling in my legs, that vasoconstrictors sometimes help, that vasodilators are always BAD, that klonopin doesn't do anything for me. That midodrine used to be great, before it stopped working. My most debilitating symptom is actually brain fog, not passing out or exercise intolerance. I'm hoping if I get enough little clues I'll be able to figure out where to go from there, since it's pretty obvious no doctor is gonna help me. I know how you feel. When the doctors don't have answers, you are forced to search for answers on your own. Has your doctor suggested Ritalin? There was a study that discussed Ritalin for patients that failed Midodrine. My POTS specialist also mentioned Provigil for brain fog.

Yes, I did, and they were normal.

I have noted that pulse pressure is the most predictive measure of how I feel. The more narrow my pulse pressure, the worse I feel and vice versa. The pulse pressure correlates more with my symptoms than heart rate.

I totally agree with, firewatcher. The researchers still have not agreed on sub groups, although I personally find the research interesting and may mention interesting tid bits found in the articles I have read. Unfortunately, I don't think the sub groups translate well into individual therapy. My POTS physician said there is a data base with POTS patients and therapies, but the sub groups have not dictated therapy. Unless the cause is isolated in an individual patient, therapy seems to be trial and error though certain parameters may sway therapy in one direction or another. For example, a patient who is already hypertension, may want to avoid vasoconstrictors. On the flip side, a patient with orthostatic hypotension, may need to be more careful on drugs that lower peripheral resistance. The hypovolemic patient may want to start with volume expanders. There also seems to be overlap within subgroups. I wish there was a better way to target therapy! A good philosophy for all POTS patients is too start low and go slow with any new medication under the guidance of a trusted physician, since we seem to be prone to adverse drug reactions. Notgivinup, Since you are hypovolemic, have your physicians considered starting you on a tiny dose of Florinef. I know you mentioned taking it once and awhile, but Florinef actually needs to build in your system and then you should be tapering slowly off, if you need to stop or reduce the dose. I imagine, as with the Adderall, you'll have to keep a close eye on your blood pressure. I wish we all knew WHY we had POTS.

I have the low renin, aldosterone, absolute hypovolemia, and reduced body mass index with many of the hyperadrenergic symptoms. My blood pressure has been running high since becoming afflicted with POTS. Of note, I just received the results of my angiotensin II done by a reputable lab. It was well within the normal range, so I am happy to rule this particular pathophysiology out and move on. Yes, I went back and reviewed the article, and Dr. Stewart mentioned a high percentage of low flow patients had high angiotensin II and this group with high angiotensin II were exclusively females and had low BMI. My understanding is that NET deficiency is very, very rare and tends to run in families. Is this true? One more question... are there are studies analyzing the NET in POTS? Could the transporter become damaged per say?

Hey TXPOTS- Like you, I exercise hard 3-4 days a week and I am also DRENCHED in sweat. It's so embarrassing. I do a boot camp-style class & I am the ONLY one who looks like she got out of a shower (I am THAT wet!!!) at the end. It's certainly harder in warm weather. My AM class starts around 60 degres and ends at 70 degrees farenheit. I find that drinking lots and lots of water during my work out to replace the fluid lost by sweating is helpful. I began this really tough regimen last June and found that consistently exercising outside throughout the entire year helped me acclimate. I'd LOVE to move to a cooler, less humid climate. I live in northern eastern GA and 100 degrees farenheit, with 100% humidity is the norm in the summer. Our work & friends & LIFE is here though. Hard to relocate. Try to keep it up. Run early. Drink. Drink. Drink. And then, Drink . I'm considering switching to G-2 rather than water now that it's heating up. That may help some. I've also switched to running shorts vs. running tights and sleeveless tops- even though it's 60 degrees. Once I start moving, the sweat starts rolling. Grrrrrr. Just wanted you to know that you are not alone. Hugs- Julie Thank you so much for the pointers and encouragement. I wonder if my body will acclimate to the summer heat in a few weeks, as you mentioned. I'm glad I am not alone with the sweating. This did not happen to me before POTS. In fact, people would comment that I didn't seem to sweat? Now I am literally drenched from top to bottom like someone hosed me down. We have decided to give the Houston summer one more go. If I still find a drastic difference in the seasons by next year, we will relocate to a cooler climate. I am still working on tweaking my medication regimen and hope to add some core training to my work outs. I'm like you. Our lives are here, but I was taken aback by how drastically the heat has affected me. My life is so limited that I was initially a bit down when heat took the spark out of my jogs.

Thankful, I appreciate your insight. You make some very good points. I guess there is no no magical POTS free land.

We are in the process of joining a gym. I am a little nervous because I don't want to stand too long around waiting for equipment, and jogging on the treadmill oddly always pulls the same muscle on the top of my foot. This only happens on treadmills. However, I am sure that I can go when it is less busy and find other cardio equipment. It's hard if I want to go to my children's activities. The cooling vest doesn't do much for me. I think I may need an entire cooling space suit as someone mentioned. Hosing off before a jog is fine, but I don't think hosing off is practical before one of my kid's soccer games. Maybe some of the dads would appreciate it. Just kidding. Just kidding. Bad, bad brain foggy joke. This is part of living with POTS. We have to re-work our lives. I think the issue with Texas (this also includes much of the US south and the world for that matter) is that it stays very hot for very, very long.

I'm curious. What is tilt training?

I actually live just outside The Woodlands in Magnolia off 1488. I do dread the summer here as well. I try to go out early in the AM and late evening. I can not tolerate the day time heat. I also have a hard time extreme cold, I can never get warm. I would love to live where is was sunny (high pressure) and 80 year round. Moving is not really an option for us right now. On another note, have you had a lot of success finding a Dr. in this area that understand POTS. I have an internist who has been willing to research things and has tried meds but he has very little experience POTS. I'm in The Woodlands. No, I've had no luck finding a doctor locally or even in the medical center. I have a good endocrinologist downtown who performed my renin, aldosterone and water deprivation study, but she is not a POTS specialist. I see Dr. Suleman in Dallas, but it is a challenge to get follow up due to the 4 hours difference. He formerly diagnosed my POTS after a long diagnosis battle. I'm sure he would be happy to be my primary POTs physician if I lived in Dallas. I have also considered seeing Dr. Levine just for an alternate opinion because i am still so debilitated. The two strikes against living here are the heat and lack of POTS physician in the Houston area.

cooler. Portland, OR temp- Jan Feb Mar Apr May Jun Jul Aug Sep Oct Nov Dec Year ?C 4.1 6.0 8.3 11.0 14.1 16.9 19.7 19.6 16.9 12.6 8.0 5.2 11.9 ?F 39.4 42.8 46.9 51.8 57.4 62.4 67.5 67.3 62.4 54.7 46.4 41.4 53.4 Source: PORTLAND data derived from GHCN 2 Beta. 1426 months between 1873 and 1991 Looks like my idea of weather heaven. My husband is being recruited for a job there. If I absolutely can not tolerate another summer here in Houston, we may seriously consider it. I seem to do well in cold temperatures, but the heat is doing me in.