PotsMom

We have experimented with IVs just a bit and it is the only thing that has had any noticeable benefit for my son! The downside is it is very transient and cost can be prohibitive. We would really like to experiment more with this but it is very expensive. I have not given up, however, on finding a way to be able to use them, if nothing else during big crashes. One of my son's secondary issues relative to the most debilitaing ones is that apetite-wise there are not a lot of things that are appealing to him. Also he generally hates the thought of eating until later in the day. Each time he has had an IV, not only has he felt much better overall afterwards, but he immediately wants to go get something to eat and often requests a hamburger, which he has no desire for normally. This in and of itself is remarkable for him. Kitsakatsa, interesting about the difference for you with the hypertonic solution. Also, are you saying that when infused more slowly the benefits are greater? Just curious about that. I too would love to hear from others about your experiences with this. I would also be interested in the kind of pricing you have encountered with this. What I have found for the most part has been $200-plus per infusion. Is this in line with others experiences? Thanks for all input.

I'll bet that is the same info I have. I had heard he was going to put it in pamphlet form. The one I have is a more informal document with info for patients; however, the info there is some of the best general info I have seen about POTS. Lenna, as discussed I'm sending you what I have - I would guess the info in these is very similar.

I had a doctor recently point out something that I think is helpful. He emphasized that POTS by definition is a syndrome - a group of symptoms that occur together and are characteristic of a disease or a condition - and that while orthostatic intolerance is a hallmark manifestation, it is one piece of a collection of many other manifested symptoms of the syndrome. As we all know all too well, this is very true, so I think focusing on the fact that it is a syndrome and then listing some of the various manifestations that your son has and that are common to many POTS patients would be helpful. At one point someone shared with me some general patient information that Dr. Fischer at Mayo gives to patients. He also emphasizes the fact it is a syndrome and that while POTS is characterized by excessive heart rate with standing, that it is not just the changes in heart rate but a collection of many symptoms. Understandably many focus on and "get" the postural tachycardia part when it is explained to them, but for most patients it is usually the many other manifestations that are the most debilitating, and unfortunately that fact, the syndrome, is lost in translation and of course is much harder to explain as well.

Lenna, That'a a great question - how these kids get an education - it's a huge dilemma. There are so many different scenarios with the various kids/patients. My own kids are certainly examples of that. My daughter was out of school entirely for over a year. She had such a good record as a student that they simply wrote off part of that time and passed her to the next grade. She then homeschooled for a while which gave us a lot of flexibility, without which she would not have made it, and then her junior and senior years she attended classes part days and had a 504. Even so there were many tears and many days I didn't think it was possible. However, she graduated last spring and it brought proud tears to my eyes to see her walk across that stage. She would never have gotten through it without the homeschooling and the 504. Now college is a whole new dilemma. She is going to a community college this year and taking just a couple of classes. She is struggling with the reading because of the fatigue. She also did not qualify for college level math because it has been a while since she had algebra and with the memory issues she was not able to pass the qualifying math test so she is taking a high school level preparatory math class. She said the other day she just doesn't know if she can do it, but I told her we'll take it one step, one day at a time. My son, however, fatigues so quickly and severely with studying, reading, etc. that formal schooling is just not possible. We have tried everything and many various scenarios, including the benefit of an IEP and attending for one or two classes a day, homeschooling, etc. and he just simply can't maintain the energy to do it. He has had some major crashes in the process of trying. With the last one he told me, "Mom, nothing is worth that - you have no idea what that feels like, it is not worth the price." His last crash over such an effort was well over a week. Thus I can understand why he feels that way. It is amazing to watch the fatiguing process - how quick and very severe the onset - it is quite obvious. I frankly don't know what the answer is, but I have finally accepted that he will likely not be able to get a high school diploma. My hope is that possibly over time he can prepare for the GED in tiny bits and pieces. Even that, though, may very well not be possible. It is frustrating because in spite of all of this he is a smart kid who is well-spoken and writes well. I am sure he is much better educated than many kids graduating from high school these days. He watches a lot of educational TV, video documentaries, etc. and it is amazing all that he has absorbed this way. It is frustrating though because without the "paper" to formally document his education, it is still going to be difficult as far as future. However, he can only do what he can do, and we will continue to take it one day, one step at a time. Hats off to all these kids and the daily struggles of dealing with dysautonomia while also missing so much of the fun of being a kid and/or a teen.

This is a great thread - thanks to all who are contributing. Hope for All and Sarah4, I too can relate all too well to your son's stories. I have two teens with POTS - a daughter, 18, who has come a very long way from where she started at 12 and a son, 16, who has not had the significant progress she has had. The past several years have been a tough road - we all here can certainly attest to how tough it can be. My kids had very different onsets, and it took my daughter's very sudden and severe onset and the disabling start of her journey to bring to light my son's diagnosis. There is no doubt for me now that he has suffered with dysautonomia from a very young age. So many things make sense now when I look back with a dysautonomia perspective. He has always tired easily and from the beginning of school has struggled with anything that required memorization or anything that required significant mental effort. Intelligence testing showed that that was not the problem, and no one could figure it out. His symptoms grew in number and severity as he neared puberty, and when we did the poor man's tilt on him at home a year into my daughter's diagnosis, there was no doubt. His formal tilt shortly thereafter was very strongly positive. For both of my kids fatigue and fatigue with mental exertion have been the most problematic and most difficult to deal with issues, with sleep issues being large as well. For my son formal traditional schooling is impossible as he fatigues severely within five to 10 minutes of reading, listening to lectures, or anything that requires significant mental exertion, We have tried multiple medications including stimulants and antidepressants with no relief. Because sleep has become a major and worsening issue, our physician has recommended a sleep study, and we are currently working on setting that up. I believe one comment was made here that a doctor had said that sleep studies are not done on children/adolescents. They most definitely are, but you do have to look a little harder to find a sleep clinic that works with children and adolescents. You also have to look closely at pricing as this study is expensive to begin with, and we found that the only sleep clinic in our area that accommodates adolescents is a pediatric clinic and we learned that their charges are far and above the going rate for sleep studies. Thus we are currently looking at other possible locations. Julie and Christy, I have followed here and on other similar threads some of the things you have shared that have been helpful with your sons. I have made notes of some of these to ask our doctor about experimenting with after we have had the sleep study. The doctor understandably did not want to try any new medications until the sleep study is done. I do appreciate you taking the time to share things that have been helpful. Thanks to all for sharing. This place is a valuable resource and support.

It's wonderful that you have a PCP who has taken an interest and is willing to learn. Frankly I'm more and more coming to the conclusion that those types of doctors are in fact the best ones to work with anyway. Even the leading "expert" doctors who treat dysautonomia are experimenting as well as they don't have the answers either as these conditions are still too poorly understood. I sometimes think, too, that the doctors with a lot of dysautonomia experience tire of it a bit as I am sure it is very discouraging after a while as it is so hard to treat, especially the severe cases. I really think that a PCP who takes an interest in a dysautonomia patient, is willing to learn, and is willing to work with you long-term to find various pieces that help you feel better is the best alternative overall.

Julie, Thanks for sharing that. We have an appointment soon and it's an idea I will bring up as a possibility.

That's a great question. We see the same thing with my son - we know his serotonin is low and yet the serotonin medications we have tried do nothing for him and in fact make the sleep issues even worse.

Our experience has been that hot flashes go with dysautonomia with or without reason for them otherwise, e.g. menopause, etc. My teen kids both have had a lot of problems with hot flashes with POTS. My son will often use a cold pack from the freezer to put on his head when he is having a siege of them and finds that somewhat helpful. When my daughter was quite acute, she would get sieges of hot flashes every evening, one after another. My son's seem to come more irregularly but it is usually in the evening.

Thanks so very much for sharing this! I find it very interesting because a couple of years ago our naturopath ordered a 24-hour urine to measure neurotransmitters for my son, many of which were out of the normal range and serotonin was significantly low. I found that very interesting but I also found that apparently many MDs do not think much of that kind of testing as no one who has seen my son since has made even a passing comment about it. I have always thought it was of very significant interest, but what do I know??!! The fact that my son among many other things has increasingly horrific problems with sleep certainly goes with that as well. We have an upcoming visit soon, and this article will go with us, attached to those previous studies! Thank you so much for sharing the link!

Issie, In what way(s) does it make a big difference? Thanks!

I agree - this is very disappointing. It would be interesting to read the entire article and to have details about the patients in the study. Small heart? I would think that that is something that could easily be identified with testing, and if that is the only issue then yes this might help those patients, but clearly a small heart is not the cause in severe cases!! I thought it was also interesting that the conclusion was that there was no autonomic dysfunction. Then how to explain all the many various symptoms that go hand in hand with dysautonomia? I also don't think a decrease of only 9 bpm is going to have any significant effect on a patients symptoms. I have many questions in my mind about the details of this study and hope at some point we can get access to the full text. I'm going to try to reserve further judgment until I can see it in full, but what I see in the abstract version makes me feel the article does more harm than good. Exercise does help some patients. Certainly exercise involving the leg muscles has been and continues to be of benefit to my daughter. However, her progress has been very slow over a long period of time, and while it can be a contributing beneficial factor, it is by no means the cure for POTS or any other form of dysautonomia nor does it relieve all the symptoms, by a long shot.

POTS Dad, One of the many frustrating things about dysautonomia is that each patient is so unique and what works for one doesn't work for another, etc. What you're seeing with your daughter is a perfect example of that. I see it with my own kids. You just have to do exactly what you're doing, though, keep trying various things and hope to find enough individual "pieces", as I often say, to help improve symptoms and give better quality of life. B12 definitely doesn't work for all. Doesn't work for my son but for daughter it has been one of the very helpful "pieces" that helps with fatigue. However, from experience we also found that certain types of B12 work better than others for any given patient. She uses the cyanocobalamin. At one point she had one injection with another type - the name escapes me now but I want to say it started with an h - anyway, that did not have any effect for her at all, though I've heard that that type actually works better for some. I'm sure you've probably tried cataflam and Anaprox for cramping but just thought I'd throw that out there in case you haven't. We have found those very helpful. It may well be that the pooling is making it worse and one has to wonder too if the cramping itself perhaps even triggers or exacerbates pooling and thus also exacerbates the pain. I have a question for you. You mentioned that your daughter will be having a 24-hour blood pressure monitoring. Is your doctor ordering that or do you have equipment for doing that? Just curious. That is something I've thought might provide some beneficial information for doctors in my son's case and I haven't actually heard of it being done before. I would be interested to hear more about that. Keep us posted on the exercise program if she gets in. I will be interested to hear how she does and your assessment of that program in general.

Your daughter's story is all too common - searching and searching for answers and finding few in the medical profession who are familiar with dysautonomia and recognize the symptoms. Her course and problems with school are also very typical. It is awesome that you have believed in your daughter and have not given up. I have two teens with POTS and I know all too well how difficult it can be finding answers. I often think about the many kids who are out there dealing with dysautonomia whose parents do not believe or recognize there is a real problem. My heart goes out to them! It sounds like you are doing the right things for trying to treat the symptoms. Each patient is unique and what works for one doesn't necessarily work for another. It is a lot of trial and error. Excercise can definitely have its benefits but it has to be slow and gradual. My daughter, 18, has had a lot of help from excercise, particularly leg work. If there is something that your daughter has enjoyed in the past that is good for the legs, e.g. skating, biking, weight training (particularly squats), starting something like that verrry slowly and gradually could potentially be very helpful. My daughter has come a long way since being totally debilitated at 12 and 13, but even with the very significant improvement she is constantly reminded that POTS is still very much alive and if she misses the regular exercise of her legs for more than a day or two she starts getting a lot more dizziness, lightheadedness, etc. On the other hand, my son has not been able to tolerate the exercise and we are struggling to find significant progress for him. As I said, it's a lot of trial and error and finding what works and doesn't work for a given patient. It sounds like you are very diligent and that is what it takes. Places like this are also a big help for sharing and getting ideas of things to try - read, read, read - forums like this, articles, etc. One other thing that is very helpful to my daughter is B12 injections. That is a topic in and of itself as there are various kinds of B12, some more effective than others for a given patient, etc. and for some it is not helpful at all. It helps my daughter some with fatigue issues. Some young women are also helped by some of the oral contraceptives, especially those who have worsening around the menstrual cycle, so that is also something to consider with your doctor. Your daughter is blessed to have parents who recognize there is a problem and will not give up in pursuit of answers!

It does seem that vitamin D deficiency is common in POTS patients but it also seems to be common now in a much more general population as well. My kids were both found to be very low, similar to your numbers, and were given high dose D3 to get them back in normal ranges and they continue to take lower doses. It has not helped POTS symptoms but they continue to take it.

Tearose, That is interesting - thanks for sharing. That makes sense - it's frustrating that nothing can be done about it but like you said it is validating nonetheless. Do you have insomnia as well as lack of restful sleep? I would love to have a sleep study done for my son as getting to sleep and getting restful sleep are huge problems for him. However, we too are in a very high deductible situation so it is out of pocket. I feel it's going to be like everything else - may provide validating information but nowhere to go from there as far as treatment. So hard to know what to do. My daughter takes Neurontin (gabapentin) for her restless legs and that has helped give her more restorative sleep. We tried it briefly with my son and it didn't seem to work for him.

That's very interesting. My kids had the Q-SART testing. Son's results from that were very similar to results of your skin biopsy: "sweat production is decreased to less than 50% of minimum values at the distal leg indicative of length-dependent impairment of post-ganglionic, sympathetic-cholinergic nerve fibers." Daughter's Q-SART was normal except "the 'hung-up' pattern (persistent sweat production after the stimulus cessation) was observed at the foot which is observed in hyperalgesia secondary to neuropathies." Based on symptoms in her feet the neurologist in his report mentioned she has symptoms suggestive of small fiber neuropathy. Based on these test results and our family history, the neuro recommended that they both have ganglionic acetyl choline receptor antibody testing. They did, and it was "normal" for both of them. However, regardless of the results of that test I am still convinced, due to their history and family history, that their dysautonomia has an autoimmune cause. I am also pretty convinced that the IVIG my daughter had helped to set things in motion for some improvement for her, and that too would seem to fit with the likely autoimmune cause. The more I think about this the more I think we should seriously thinkg about pursuing potential IVIG for my son.

Keely, Thanks so much for sharing your very interesting story and I hope you will keep us updated in this thread as to your continued experience with the IVIG. Do you know which antibody titres you had that you mentioned were negative? Thanks again. Do keep us posted. This is a very interesting thread...

arizona girl, That's interesting that the timeframe we saw is similar to what your neuro had said. The doctor who ordered this for my daughter had talked about a similar timeframe, but he felt it wasn't worth doing more of it as the changes that we saw were so small and thus not conclusively as due to the IVIG. However, in retrospect I wonder if some additional treatments at intervals similar to what your neuro has recommended would not have been very helpful. This discussion is making me rethink looking into this possibility for my son. Both son and daughter have had testing that indicated they have a "length-dependent neuropathy" with signs of small fiber neuropathy. Very interesting in light of this discussion. As for autoimmune in my family, severe Sjogrens x 1 and very likely x two more, arthritis, Hashimoto's, Parkinson's disease, colitis, and some very highly elevated autoimmune panels. There is also severe fibromyalgia and chronic fatigue syndrome which I am not sure are technically autoimmune but I have found it very interesting in talking with others that it is not uncommon for patients with dysautonomia to have these in their family history.

I will add our experience to this thread. When my teen daughter was quite severe with POTS four-plus years ago, she was put in the hospital for a few days for observation and one of the things they tried while she was there was some IVIG infusions. We were told that the benefits, if any, would not necessarily be immediate, but it was worth a try for anything at that point as she was completely debilitated at 13. We will never be able to say for sure if the IVIG had impact, but interestingly about two months after the infusion she began to show the first flickering signs that things were changing. She had been down for almost exactly a year at that point. She was miserable and unable to do anything. I will never forget the day I saw her get off the couch and sit on the floor and play with the dogs for about five to 10 minutes. That may sound ridiculous, but I was ecstatic. Though seemingly miniscule, it was a major change relatively speaking. For a year she had been horizontal on the couch and was in agony when we tried to force her to walk around a bit, etc. Now for the first time she was voluntarily sitting on the floor doing an activity. That was the very tiny beginning of her improvement. She has always told me that she felt like something switched in her body at that point and that it was ready to begin recovery. It was very, very slow progress over a very long period of time, but that was the marker that we always look back to as to when things started to change. Did the IVIG have something to do with that? I don't know, but you really have to wonder and she has always thought that it did. There have certainly been other factors that have impacted her progress over time as well, but I will always think that the IVIG had something to do with setting things in motion, though we of course cannot know that for sure. She is still not completely recovered but she is night and day now from where she started. I have often wondered if we should give it a try with my son, 16, who is still struggling greatly with dysautonomia and has not had the progress that she has had. We have extensive autoimmune issues on the maternal side of my family including myself. I am absolutely convinced that the dysautonomia with my kids is tied into that. If IVIG is helpful with some autoimmune issues, then that would be additional support that the IVIG likely did in fact have an impact on my daughter.

When my daughter was in the most acute stages of her POTS she had a lot of trouble with outbreaks of hives. Her back would sometimes be nearly completely covered, and they would come for no apparent reason. One time before the POTS diagnosis when we were desperately searching for answers for all of her symptoms, we actually went to a hotel for the weekend, thinking that perhaps something in our house was causing her wide array of strange symptoms. When we tried to get her in the pool, she just stood in the water for a few minutes and when she got out, she was covered in hives everywhere the water had touched her. Later that night she broke out again, seeming to be precipitated by the bedspread in the hotel. When she was diagnosed with POTS a few weeks later, the doctor said that this was all part of the POTS and he gave her hydroxyzine to take with outbreaks. She only had these particular symptoms when she was at the most severe stages. During this time she also had severe hot flashes that would come in waves, usually late afternoon and evening. Our son has only occasionally had a single hive, never the outbreaks like this, but he has the hot flashes on a regular basis, usually in the evening. A malfunctioning ANS can do lots of strange things!

Yes! This is a problem for my son. He is rarely hungry until later in the day and more often the evening. Anything he eats before that is due to me trying to force it in my hopes that eating will at least give him a bit of additional energy. He always says, "I'm not hungry! Early to late evening he will then eat and seems to make up for what he didn't eat earlier in the day. The other thing is that the variety of foods that he wants/feels like eating is very small, and interestingly they are all mostly carbs/high salt. I've had opportunity to see how healthy teenage boys eat, and it brings home once again the reality of dealing with dysautonomia. My son had a couple of IV infusions at one point, which I must say is the only thing that has been of significant benefit for him. It was like watching a flower bloom in front of my eyes. Anyway, besides watching him visibly have increased energy, etc., the other thing of significant note was that both times towards the latter end of the infusion he said to me that when he got done with that he needed to go get something to eat. That was shocking enough since this was late morning/early afternoon, but in addition, one of the days he even specifically requested a hamburger, something that he rarely wants! If there was ever any doubt that the appetite issues are related to the dysautonomia, those two experiences put those doubts to rest.

I definitely think it has to do with the body trying to get oxygen due to pooling, etc. My son gets very tired with mental exertion and along with the fatigue he often begins to yawn a lot. My daughter, who also has POTS but is significantly better than she was for a long time, has had the same. It's not as severe for her now as it was when her POTS was more acute. There is no doubt in my mind it has to do with the brain trying to get more oxygen.

Firewatcher, You mention the melatonin but what else did you ultimately settle into to help you sleep. Sleep is a huge problem for my son as well. He took melatonin for some time; it was semi-helpful but he had to take it at higher and higher doses for it to help. We finally gave up as then he began to sleep too much during the daytime, and that seemed to directly relate to the high dose of melatonin he was taking. When he came off of it, the daytime sleeping issues resolved. Just curious what you are taking besides the melatonin.

We see the same trend with my son. I feel there is some kind of adrenaline surge that allows this kind of thing and then once it's over there's the crash. It is very frustrating as there is no way to explain this to others who don't deal with it on a daily basis as a patient or caregiver, and this often includes family members as well. Being able to do that thing one really wants to do is great, and I'm always very happy to see it. At the same frustrating time it gives others who don't understand the opportunity to mistakenly perceive that actually the patient can do what they really want to do, so how real is this?!! It tears me up to see my son suffer so and at the same time to have to deal with so much disbelief!!! The human body in general and this disorder specifically are both so complicated and it will likely be a long time, if ever, before all these puzzles will be solved. Meanwhile patients have to deal not only with the illness itself but a huge lack of belief from so many.