Hypovolemia Pots

[Psalm 23]

I am another one of those very high NE level, very labile b/p (80's/50's-200/110) with a salt loading recommendation in addition to medication and other therapies. I am presently consuming 9gm and 2.5 liters fluid per day.

Janet

[ramakentesh]

1. All the etiologies presented for 'hyperadrenergic POTS' involve low blood volume and reduced vasocobstrictive responses in the splanchnic circulation except the very rare central hyper which is more like baroreflex failure. The postural hypertension is either just an expression of increased peripheral resistance with reduced central, thoratic and stomach constriction or it is the potentiation of NE effects peripherally.

This means that none of the dangers of essential and sustained hypertension are present and salt loading and volume expansion ARE essential.

2. Where aldosterone levels are low or suppressed oral salt loading may be useless other than acutely.

3. In low flow pots when patients were given a vasodilator on tilt their symptoms worsened suggesting that the peripheral vasoconstriction is not the primary problem and may even be compensatory.

4. Angiotensin II blockers are given to suppress sympathetic activity not to vasodilate.

5. Midodrine was nit suggested for low flow pots.

[ramakentesh]

Low Flow angiotensin II pots is the 'renin aldosterone paradox' subgroup. Neuropathic pots may result in sluggish aldosterone responses. Sympathetic activation alone can cause volume loss. In NET deficiency elevated peripheral dopamine may cause duiresis.

[ramakentesh]

Low blood volume goes hand in hand with all hyper pots. essential hypertension have elevated volume, sustained high BP, kidney vasoconstriction, increased cerebral volume. The opposite occurs in POTS so sodium and volume expansion are essential.

[NMPotsie]

I was dxd hyperpots at Mayo and also hypovolemic via sodium and eventually blood volume testing. I don't know a lot about it, but my doctor explained that the hypovolemia causes a drop in bp so my body dumps a bunch of NE to raise it, which causes a kind of rebound hypertension and the high bp and high NE levels. Thus, I have to first salt and fluid load to build blood volume so I'm less likely to get the hyper episodes; the beta blocker then lowers the heartrate (and sometimes the bp too much). I will go from 90/60 flat to 140/90 within a couple of minutes, so I experience both ends of the bp spectrum. I also had abnormal QSART results and neuropathic issues.

I have hyper pots but clonidine causes rebound hypertension in me because my bp gets too low. Perhaps this distinction is not useful, as I think Rama has suggested (sorry...I don't always understand everything you say ); I'm thinking one day we may find they have subgroups based on cause, rather than manifestations of the syndrome (as "hyper" pots sometimes seems to be).

I don't really find this classification helpful; in fact, sometimes I resent it because they want to apply a one-size fits all treatment to hyper patients (ie you shouldn't salt load because you've got high NE...yet many of us do).

[kitt]

I was dxd hyperpots at Mayo and also hypovolemic via sodium and eventually blood volume testing. I don't know a lot about it, but my doctor explained that the hypovolemia causes a drop in bp so my body dumps a bunch of NE to raise it, which causes a kind of rebound hypertension and the high bp and high NE levels. Thus, I have to first salt and fluid load to build blood volume so I'm less likely to get the hyper episodes; the beta blocker then lowers the heartrate (and sometimes the bp too much). I will go from 90/60 flat to 140/90 within a couple of minutes, so I experience both ends of the bp spectrum. I also had abnormal QSART results and neuropathic issues.

I have hyper pots but clonidine causes rebound hypertension in me because my bp gets too low. Perhaps this distinction is not useful, as I think Rama has suggested (sorry...I don't always understand everything you say ); I'm thinking one day we may find they have subgroups based on cause, rather than manifestations of the syndrome (as "hyper" pots sometimes seems to be).

I don't really find this classification helpful; in fact, sometimes I resent it because they want to apply a one-size fits all treatment to hyper patients (ie you shouldn't salt load because you've got high NE...yet many of us do).

NM Potsie, NOBODY explains things better than you. I always 'get' what you say. You can speak up and I never feel like you speak down.

Thanks for that, and this explanation is great. Makes me smile, cause I always understand what you're saying, and more importantly you've usually helped me better understand what I'm thinking.

Smiles!

K

[ramakentesh]

I was dxd hyperpots at Mayo and also hypovolemic via sodium and eventually blood volume testing. I don't know a lot about it, but my doctor explained that the hypovolemia causes a drop in bp so my body dumps a bunch of NE to raise it, which causes a kind of rebound hypertension and the high bp and high NE levels. Thus, I have to first salt and fluid load to build blood volume so I'm less likely to get the hyper episodes; the beta blocker then lowers the heartrate (and sometimes the bp too much). I will go from 90/60 flat to 140/90 within a couple of minutes, so I experience both ends of the bp spectrum. I also had abnormal QSART results and neuropathic issues.

I have hyper pots but clonidine causes rebound hypertension in me because my bp gets too low. Perhaps this distinction is not useful, as I think Rama has suggested (sorry...I don't always understand everything you say ); I'm thinking one day we may find they have subgroups based on cause, rather than manifestations of the syndrome (as "hyper" pots sometimes seems to be).

I don't really find this classification helpful; in fact, sometimes I resent it because they want to apply a one-size fits all treatment to hyper patients (ie you shouldn't salt load because you've got high NE...yet many of us do).

I was dxd hyperpots at Mayo and also hypovolemic via sodium and eventually blood volume testing. I don't know a lot about it, but my doctor explained that the hypovolemia causes a drop in bp so my body dumps a bunch of NE to raise it, which causes a kind of rebound hypertension and the high bp and high NE levels. Thus, I have to first salt and fluid load to build blood volume so I'm less likely to get the hyper episodes; the beta blocker then lowers the heartrate (and sometimes the bp too much). I will go from 90/60 flat to 140/90 within a couple of minutes, so I experience both ends of the bp spectrum. I also had abnormal QSART results and neuropathic issues.

I have hyper pots but clonidine causes rebound hypertension in me because my bp gets too low. Perhaps this distinction is not useful, as I think Rama has suggested (sorry...I don't always understand everything you say ); I'm thinking one day we may find they have subgroups based on cause, rather than manifestations of the syndrome (as "hyper" pots sometimes seems to be).

I don't really find this classification helpful; in fact, sometimes I resent it because they want to apply a one-size fits all treatment to hyper patients (ie you shouldn't salt load because you've got high NE...yet many of us do).

Exactly. And I dont understand myself sometimes.

[ramakentesh]

sorry if my responses were abrupt - typing on mobile phone while standing on busy train.

[HyperPOTS8]

Because of the mechanism that NM Potsie explained, Dr Grubb may use midodrine in my case which would seem on the surface not to make sense since my BP can go very high. He said it doesn't make the high BP's higher.

[BarbaraC]

I have been diagnosed with hypovolemic POTS. The Mayo Clinic developed a test that specifically tests blood volume. It involves radioactive dye and plasma spinning after taking the blood at different intervals. I believe that it tests how quickly the die moves through your body and therefore is able to give the doctors an estimate of your blood volume. The doctor was able to give me exact numbers on how low I was on overall blood volume, amount of red blood cells, and plasma levels. For me, I am low on all three. My doctor at Mayo explained that low blood volume is causing the POTS, so by treating the blood volume, I can improve the POTS. I am on a specific exercise regimen now and on a salt (15,000 mg a day) and water loading plan, and over time have been getting better. The exercise is really hard, but I know the end result is worth it.

I am at Mayo Phoenix, but the radiologist told me that all three Mayo Clinics have the blood volume test. I had previously had all the blood tests, 24 hr urine tests, and a tilt table test, so this was just the final test to be sure.

[BarbaraC]

Forgot to mention, I do have low blood pressure all the time with the low blood volume. It goes even lower upon standing and sitting, often with near fainting.

[looneymom]

Wow Barbara! Thanks for your information. My son was diagnosed at MAYO at Rochester, MN back in December 2011. This test was not done with him. He will be seeing the cardiologist in two weeks and there is a hospital nearby that has the machine. Since he has already mentioned this to us, I'm going to ask about having the test done.

The cardiologist thinks the low blood volume may be part of the problem. He has requested that our family doctor run some autoimmune test, so my son will see him tomorrow.

The exercise part is hard. Before my son had the flu, he could ride a stationary bike for 15-20 minutes. He could also walk or stand around for about 10 minutes before he would start shaking and have to sit down. My son was able to maintain three months at this level of functioning. He is nowhere near this level of functioning now. He remembers this well and want this all back.

He has never fainted on me yet. He is heat intolerant and can recognize when he is getting in trouble with the heat. He has low dopamine and serotinon levels and has always had trouble with constipation. I am hoping that our doctor will run the AAG test. This a blood test that has to be sent to MAYO.

Hypovolemic would also play a role in this disease. I really want this to be just plain old POTS but my son has so many symptoms. The more research I do, the more questions I have and the more frustrating it becomes. But I refuse to give up because my son deserves his life back.

Keep posting. I'm sure this post must be helping someone else besides me. Hope everyone is having a symptom free day.

[BarbaraC]

I am glad to hear your son will be able to get the test done. It was very informative, especially because it was able to determine the 3 different types of low blood volume. I also have low dopamine and serotonin levels, and antidepressants have helped these numbers and my general health and fatigue. I have a lot of digestive problems, but I have found eating smaller meals and keeping my feet up while I eat helps a bit. But a lot of days, I just have to deal with it unfortunately. The salt tabs and/or florinef (both aiding in water retention) help in general too.

When my crisis started in October, I couldn't sit for more than a couple minutes and could barely walk to the bathroom unaided. My doctor started me with standing 3 min twice a day, leaning against a wall and then increasing a min/day as I could up to 30 min. It was so awful at first, but I was able to get there. Now that I am comfortable with that, I am increasing to an hour twice a day and 30 min twice a day on a treadmill. I also raised the head of my bed and salt and water loaded. The doctor said that this will basically retrain my body that it can stand/sit. He said that so far the patients at Mayo who have followed the protocol have seen an almost complete reversal in their symptoms in 1-3 years and they haven't had any recurrence of symptoms in the 5 years they've been doing this.

So, hopefully that will give you and your son some hope! I have had a lot of steps forward, but some steps backward too (like with your son's flu), but overall there has been a lot of progress. I am standing 40 min twice a day now and walking 5 min twice a day. I've been able to start some of my regular activities again too, like cooking, dining out (where it is casual enough for me to put my feet up), short trips to the store with my husband, having friends visit, etc. I am hopeful your son will soon get there too!

[MightyMouse]

This may be a chicken or egg argument-- I have a confirmed diagnosis of hypovolemia--however, does that cause my POTS/NMH symptoms? or is it that my POTS/NMH causes my body to lose too much fluid and I become dehydrated/hypovolemic. I don't think the medical answers are in yet on this one. There is some research about some patients "salt wasting" (urinating out more salt that most people)--but this isn't a consistent finding in all patients with hypovolemia as far as I know.

[looneymom]

BarbaraC

Before your POTS diagnosis, did you have lower back pain? This pain for my son started before he actually could not walk anymore. He would complain of pain in his lower back, knees, and ankles while he was walking. Was this part of your condition?

After he had the flu, the occupational therapist set a goal for him to set up an hour in the morning and an hour in the afternoon( feet down in a living room chair). My son was successful in reaching this goal ( was able to do 2 hours in the morning and 2 hours in the afternoon). However, he began having tremors, shaking so much more and his back pain increased. The shaking got so bad at physical therapy sessions, that he could not finish the session. The cardiologist stepped in and cut this back due to all the shaking and pain issues.

It's hard to push through things like this. Have you experienced anything similar to this after you started your standing?

[ramakentesh]

This may be a chicken or egg argument-- I have a confirmed diagnosis of hypovolemia--however, does that cause my POTS/NMH symptoms? or is it that my POTS/NMH causes my body to lose too much fluid and I become dehydrated/hypovolemic. I don't think the medical answers are in yet on this one. There is some research about some patients "salt wasting" (urinating out more salt that most people)--but this isn't a consistent finding in all patients with hypovolemia as far as I know.

the prevailing thought in NHM and neuropathic pots it might be a combination of sluggish kidney responses, plasma volume being extracted after leaking out of micro circulation and maybe even dopamine effects but its still murky.

[BarbaraC]

Oh your poor son! That is so tough! With the standing, at the beginning, I would be crying in pain trying to make it to my goal for the day It just hurt everywhere, but especially from my feet up to my lower back from the blood pooling. I think that's why my doctor had me start out so gradually. And some days I just couldn't make it and had to try again the next day. It took me about 2 1/2 months to got from 3 min to 30 to give you an idea. And the doctor said it was normal to go backward sometimes with the progress.

Compression socks help a bit with the foot to knee pain - my doctor had me get the ones that go just over the knee. I'm not sure if your son has tried them yet. You can get some comfortable ones now that feel just like real socks.

When I first got sick at 15, we found that I had had a large growth spurt - about an 1". It was so much, so fast, that one of my vertebrae actually popped out in my back. This obviously caused quite a bit of back and body pain. Could your son have recently grown? At the time, the Dysautonomia doctor I saw surmised that the growth spurt is what instigated my illness.

I hope that information helps. Feel free to PM me too for any additional information.

[issie]

.

[diabeticgonewild]

BarbaraC

Before your POTS diagnosis, did you have lower back pain? This pain for my son started before he actually could not walk anymore. He would complain of pain in his lower back, knees, and ankles while he was walking. Was this part of your condition?

After he had the flu, the occupational therapist set a goal for him to set up an hour in the morning and an hour in the afternoon( feet down in a living room chair). My son was successful in reaching this goal ( was able to do 2 hours in the morning and 2 hours in the afternoon). However, he began having tremors, shaking so much more and his back pain increased. The shaking got so bad at physical therapy sessions, that he could not finish the session. The cardiologist stepped in and cut this back due to all the shaking and pain issues.

It's hard to push through things like this. Have you experienced anything similar to this after you started your standing?

I know I am not BarbaraC, but I had bad low back pain and even bone and joint pain.

Has it been considered for him to be checked for adrenal insufficiency or electrolyte imbalances?

I have tested for low cortisol concentrations before, but I didn't have adrenal insufficency when they did the cortisol stimulation test. I think it had to do with the amount of Florinef I was taking at the time (0.3 mg). 0.4 mg of Florinef can cause "adrenal suppression" according to a publication by Dr. Grubb. Also, I get bone and joint pain (even tooth pain, for that matter) when I ingest too much salt in general, due to fluid shifts and electrolyte changes. Florinef added to the mix certainly made it worse for me.

I am just trying to give active input regarding the situation and to keep an active dialog.

[looneymom]

My son has been checked for adrenal insufficiency two years ago and everything was fine. However, I do wonder about the electrolytes. He dose take .2mg of Florinef in the morning. For POTS, salt loading is supposed to help but too much will effect the adrenal system. Which in return can cause high norephrine levels. Someone correct me, if I'm not getting this right. There is a blood test to check electrolytes but is this the best test to check these levels. His levels were checked the end of February and in range. However, his symptoms that he has had since the flu have not gone away. How often should someone have their electrolytes checked?

[Guest Alex]

looneymom,

I believe the blood work for electrolytes is what is used to determine if things are OK,at least that's what my dr used. While i haven't seen any written info on the frequency of the testing for electrolytes while on florinef (the recommendation is 'often' which is quite vague) I used to have them checked every 3 mo or so. One thing I learned the hard way is that florinef doesn't only deplete potassium, but can also lower calcium and magnesium levels, so you might want to ask for all of these to be included in the blood work.

My understanding was that a higher salt intake is increasing the adrenaline/epinephrine levels (but I might have gotten the epi and norepi mixed up).

Alex

[diabeticgonewild]

Looneymom,

I agree with alex74alex.

I am an adult, but when I take around 6 grams of salt a day, I get muscle/joint pain, in addition to "muscle cramping". Salt causes fluid shifts in the bloodstream, and can cause various electrolyte imbalances. Diabetes doesn't help this matter either. Also, sometimes I drink up to 8 liters of fluid a day (!!!), which doesn't help at all. (I could probably benefit from a blood volume test, to say the least!)

When I was on Florinef, I would get low back pain, around where my adrenal glands were. I also had my cortisol tested when I was on this medication, and I had a low cortisol value. My adernal stim test came back fine, but the low back pain did not go away until I discontinued the Florinef (gradually tapering down) for a few days.

Discontinuing Florinef may not be an option for your child. Erythropoietin may be another option (although it is very expensive). Octreotride is another option too. Both are injectable drugs, and last awhile like weeks, at least, so this may not be the best option for your child, given the situation at hand.

Saline IV infusions may be the best option, given the situation at hand. If IV access is poor, a port may be the best option. Care of the port is critical, and the port must be flushed at least once a month. You will always have to keep a close eye on whoever accesses the port-and be ready to tell a person accessing his port improperly to stop and use proper techniques- because sepsis or an infection is a risk.

This will give you an idea about port access, although formal training is essential

What I would discuss with his doctor:

1. Side effects from Florinef

2. Muscle, Joint Pain, and Flank (low back) pain, and how salt and Florinef effect this.

3. Blood volume testing and possibly electrolyte values (an electrolyte test/metabolic panel may be useful, but this is not always an indicator of the problems your child is experiencing)

4. Future treatments, that will not likely compromise health if the future treatment is ineffective (for any reason), given your child's health situation. This could be brought up, especially if Florinef and Salt loading are potentially causing problems. I imagine that this would be pending on the results of a blood volume test and metabolic panel. Potentially bring up other medications (like the injectables I mentioned), saline infusions, or even a possible referral to somewhere else.

I can imagine you addressing all of these points at an appointment. However, I do not think that all of these issues can be resolved with a single appointment. So, prompt follow up with the treating physician could be probable, after the appointment where you address issues.

[looneymom]

Issie

Have your dopamine levels been checked? My son's dopamine levels in blood work are nonexistent. However if I'm understanding some of the answers on different post, high NE levels can be produced from different sources in the body. Is the only good test to measure NE levels is by standing up and drawing blood? Or is there another test that can measure it. Like you my son also has low renin and aldosterone. So I am still confused also but I have many questions to ask the cardiologist in June.

[issie]

I don't remember if my dopamine levels were checked or not. Will have to go back and pull out the old testing.

What happens with those with high NE levels and those that they seem to put into the hyper response catagory - is the lying and resting NE levels change considerably when you stand - it raises up abnormally high. There should be a rise --but, not to the levels that it goes. That is how they determine this. I don't know of another test that they are doing in this regard. If both resting and standing levels of NE are high - they start to look more at pheo's.

There is some theory that this rise could possibly be compensatory response. Which means --it could be a good thing. It causes more constriction of veins and it could help with blood pooling and also blood flow back to the heart and brain. I don't think this idea has been researched or proven to be the case --but, it seems to make sense.

I think we have a lot more to learn yet.

Issie