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Miraclemaker11

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  1. Hello again Friends. Thanks for your patience with my delay in responding. I’m just trying to keep up with everything here. KimInOrlando - I’m sorry that the Northera didn’t end up panning out for you, but very much appreciate the endorsement of it as another option for my son. Thank you! Pistol - That’s one of the best explanations about POTS (and related disorders) and the issues with sympathetic tone and the under or over reaction of the autonomic nervous system. I know you have both high and low BP, so that must wreak havoc on you. With my son, we are only seeing the lower blood pressure but with erratic adrenal surges and aggression. It’s interesting that the Midodrine (essentially a vasoconstricting stimulant) actually calms him. And, I’m now worries that some of the sedating medications he takes (clonazepam, mestinon, etc.) might be making him worse by weakening/relaxing the muscles too much. How exactly did you get your diagnosis of the low blood volume and oversized red blood cells? For as much testing as my son has completed it still isn’t clear to me that his actual blood volume has been measured. Interestingly, I’m having my own broadly similar symptoms - lightheadedness, having to lay down to elevate my feet, high blood pressure (my son’s is low), etc. I lot of my cardiovascular tests have been normal but I’ll be getting a tilt table test (for the first time) in 2 weeks. RecipeForDisaster - How do you even survive and make in through your day with a BP of 72/40??? I suppose that the short answer is ... IV Fluids and DDAVP. But, what a disruptive and invasive way to live. What do the lactated ringers do? Also, what diagnostic tests came back definitive for you with respect to any aspects of your medical issues? My heart goes out to you (and everyone here). There has to be a missing component that links many of these disorders and makes for “the invisible illness.” Is it autoimmune???
  2. RecipeForDisaster - It was indeed you who had shared about taking the Midodrine at a lower dosage more frequently. I’m glad that you get at least some relief from that. How often do you need to take the IV Fluids? To what extent and in what manner does the DDAVP help you? Lastly, when you do get side effects from Midodrine, what are they? My son does not seem to get any kind of high blood pressure from Midodrine, but it appears as though he gets headaches when the benefits of it wear off and his blood pressure starts dropping again. KiminOrlando - Thank you for that suggestion about trying Northera. I did write it down on list but have yet to ask the doctors about it. I’m assuming you take it. If so, what exact benefit do you notice? Thanks again to both of you. All of this means a lot. I hope that in some way I can help you too!
  3. Hello again my friends. Thank you as always as we are doing our best to help our 22-year-old autistic son with POTS. He has chronic low BP (although not as low as I’ve seen from others on this board) to go along with his POTS. He is clearly “normal” when his BP gets close to normal or stays there but is otherwise chronically fatigued and erratically aggressive. We tried Florinef again for a couple of days and this clearly made him worse (much more fatigued, headache, disturbed sleep, etc.), so that does not appear to be an option for him. Of everything we’ve tried Midodrine works the best. He is now on Midodrine 7,5 mg four times daily. While this helps, the effect/benefit only seems to last about 2 hours. I’ve read from one other poster here on DINET that he has had great response to Midodrine 60mg daily taken 2,5 mg every hour. Has anyone else had a positive response like this to Midodrine? It seems that lower dosage (2.5mg) given more often boosts the benefit and lowers the side effect risk. Also, what are folks general observation as to why so many people with POTS and low blood pressure have normal functioning hearts? It must be something like a neuromuscular defect that impairs circulation that cause the low blood pressure, right? And, in turn, this might explain why many of these medications have a limited effect. As always, I appreciate the thoughts, support, and feedback!
  4. Hi again Targs66. I’m so very sorry to hear that you are suffering in this way. And yet you’ve been compassionate enough to respond to the thread about my son and his POTS. It sounds like your heart might be functioning well enough (but it is so scary to not know for sure) but the autonomic cardiac components are not working right at all. I see you’ve tried all of the key meds and natural remedies but with very little benefit. Having said that, I saw where another person posting on DINET had success taking Midodrine 60mg per day and split it up by taking 2.5mg per hour to reduce the side effects. I know that’s imperfect math there, but I wondered if that might help you instead? I’m actually going to post this question to the board later today. I truly hope you get some answers and relief.
  5. Thank you again Targs66, It’s one step at a time over here. No luck for my son on the Florinef after a couple days of his being back on it. He was noticeably more fatigued, had disturbed sleep, headaches, etc. It seems that a lot of this is a guessing game. We’re not clear if his POTS is actually caused by low blood volume. If that’s not the case, then the Florinef can cause increased intracranial pressure and make you worse. It’s back to the drawing board over here. I’m sending you lots of compassion as well as to the others on this thread and board!
  6. Hello Friends. Happy Thanksgiving! Thank you for your help and patience. I know my response has been slightly delayed. Clb75 - That’s a great question and suggestion about Florinef. We tried it one day for my son and it gave him a headache. But, after speaking with his cardiologist earlier this week, we have decided to have him go back on it (lowest dosage) in combination with his Midodrine. Today is the first day trying it, so wish us luck! Also, while we never found another specialist we are closely coordinating the care with his family doctor/PCP (who is kind and thorough and willing to learn). Targs66 - I’m sorry that you went through all of that with the clonazepam. My take on that is apparently POTS operates very much like Chronic Fatigue Syndrome and some of the medications (like Midodrine) that help are actually stimulants. So, when you have POTS and take a sedating medication like clonazepam maybe then it worsens the fatigue and exacerbates the downward spiral. We’re going to try to get my son’s BP elevated with the addition of Florinef and, if that works, will very slowly wean him off of the clonazepam. JaneEyre9 - Hello again to you! You are so very resourceful. I had come across that information about licorice root but have yet to try it for my son. Is that something that is fast acting? Can you take it for a sharp blood pressure drop? We’ll consider that too and will make sure to closely monitor his potassium levels. Thank you - always.
  7. Hello Friends! I wrote here a few weeks back on behalf of my 22-year-old autistic son (I’m the dad) who was diagnosed with POTS back in August. His main symptoms are the chronic fatigue, erratic fitful sleep, heightened anxiety (much more so than his usual sensory sensitivity related to his autism), and marked aggressive episodes. He was a totally different kid (energetic, loving, playful and NEVER even remotely angry) up until 2.5 years ago. He takes midodrine, mestinon, vistaril/RelaxMax/magnesium (at bedtime), and clonazepam. Of all of these medications, we most notice a positive response to the Midodrine. He’s now on that 7.5 mg four times daily. This seems to help his mood and energy but only for about 2 to 3 hours. When we increased the Midodrine to the recent dosage/frequency, he had 9 straight days without any aggression. Thus, it’s like a chronic fatigue syndrome such that with the chronically low blood pressure (still dose not get close to normal even with the MIdodrine, salt, etc.) it seems that his body over corrects to wake him up by producing adrenaline (which causes the aggression). Any thoughts on this? Any different meds to raise the BP more consistently during the day, take Midodrine more frequently perhaps? And, we’ve also considered Clonidine but my understanding is that, while it relaxes/dilates the blood vessels and improves blood volume it also LOWERS blood pressure. I’m afraid to have him take it because he already has low blood pressure and that’s when he is at his worst. Thank you for listening and your compassion.
  8. Thank you again JaneEyre9. We are encouraged by this recent relative good news for our son. And, hopefully, we’ll have luck being able to get that testing done. I’m wishing the very best for you. Everything counts in small amounts
  9. Hi again JaneEyre9. I see that you’ve really done your research and put in the full effort toward your flight back to health. I’m familiar with some of these adaptogens but have never heard of or tried Holy Basil/Tulsi. I’ll buy the tea and give it a try and hopefully it can also help my son. Here’s an interesting development in the past 4 days. We’ve increased his Midodrine dosage to 7.5mg three times a day and 5 mg in the early evening, and he is considerably better - much more like his old self more often. AND, he sleep has markedly improved these past 4 nights. So, it’s interesting that a stimulant (midodrine stimulating the alpha receptors) results in him being more relaxed and getting better sleep. Thank you for the link to the more detailed study and that lab in Germany. I had tracked them down before but was not exactly sure how to order the kits. I’m hoping that maybe Dr. Grubb actually has some of these kits and we can get them through him. I’m also going to take the test given that there is a lot of overlap between my son’s symptoms and my own. I do wonder how much of these dysautonomias are actually autoimmune in nature, particularly given that you’ve seen that in your own family? Thank you again for your kindness and knowledge. Every little bit helps. And, I will make sure to share what I am learning with others.
  10. Hello JaneEyre9! Thank you for reading and listening intently and revealing the depth of your empathy. I’m so thankful to hear that your integrative and diligent whole health treatment helped you get your life back. My son (as well as myself) also takes many of the supplements that you are on, and we are gluten-free, dairy-free, and vegetarian. Thank goodness the dimmer switch on your inflammatory response is controlled and dialed down so you can life a better life. I am so happy to know this I also came across some information about this study on revealing the presence of autoimmune antibodies to both alpha and muscarinic receptors (present in 90% of those with POTS in the study) and can see how this might apply to my son. Do you happen to know where we can get this specific testing completed? The article mentions as ELISA test but doesn’t say what lab they used. Also, I don’t think it’s a coincidence that I was previously diagnosed with Autoimmune Hypopituitarism with Secondary Adrenal Insufficiency, am now having a recurrence of those symptoms, and previously improved on Prednisone. It might explain why my son seems to be having the best response overall to Midodrine. While it’s mostly used to treat POTS, it is also a medication that is prescribed for Adrenal Fatigue. Thank you from all parts of my heart.
  11. Pistol - thank you for your thoughtful response. My heart is with you envisioning how you even try to make it through your days. It seems like what is most tricky for you is that you are getting alternating over and under activity of the autonomic nervous system. That throws you into the Hyper POTS and high variability in blood pressure. It would seem that, if your blood pressure could remain stable and close to normal then you wouldn’t end up with adrenal surges or surges. Has that been true for you? It does seem that Carvedilol and Diltiazem help along with the port and IV fluids. I’m sorry that the Midodrine didn’t work for you. Did you actually get the supine hypertension from it or did it simply not work. I’ve actually read in a couple of places where people have done well on a low dosage (2.5 mg) of Midodrine taken every 1 to 2 hours. The low dosage apparently prevents extra high blood pressure and helps avoid the #1 side effect of headaches. It does look like (even in Hyper POTS) that the adrenal surges are counter regulatory to offset the low BP and drops in BP, so if you can actually boost the BP and keep it stable then you prevent the maddening see-saw of symptoms. As for my son, I just now gave him his Midodrine about an hour ago and he is COMPLETELY normal - just like his old self. He’s having no fatigue, no mood symptoms, is upbeat, mentally clear, etc. This is definitely not Bipolar - not even close. He has no mood (other than happy and pleasant) or psychological symptoms when his BP is normal. We are fortunate to have specialists working with my son in Northern Virginia, but that is 5 hours from us. We are trying to arrange a way for our follow ups to be by phone but it seems they are resistant to doing that. Having said that, the treatment team and two doctors up there have been excellent. Overpots - thank you again and again. Just by caring and thinking it through you’ve already helped my family. I too think that that Clonidine makes the most sense, and at some point we should try that. Without a doubt , if my son is experiencing constant norepinephrine overload then his sleep will be impaired (true), he’ll be even more chronically exhausted (true), and more prone to these rages (true). My hope that is that the Clonidine would do exactly as you described. If the blood vessels dilate more the blood volume would increase and you would think that the blood pressure (because the vessels are more dilated) might rise. But, it seems that the actual biggest downside of Clonidine is that it lower blood pressure. My son runs low blood pressure for a greater portion of the day with the sole exception being for about a 2 hour period starting an hour after he takes each Midodrine dosage. He’s never had any high blood pressure (only normal) over the past 8 months we’ve been measuring it. We are fortunate to have a very caring family physician that helps our son. He is willing to try any treatment and quite kind. But, he’s not a dysautonomia/POTS specialist. We are very lucky to have him because at least there is the will and demeanor to assist. He is one example of the type of physician you mentioned that is open to learning more about dysautonomias in general and that’s a great start.
  12. Thank you Random-Symptom Man and Overpots for your insightful and compassionate replies. Random-Symptom Man - it is much like you described ... being trapped in an Iron Maiden and then the adrenaline surge appears to help get you out. I admire your awareness and restraint which seemingly must require super-human will power to execute. The best book I’ve read on this subject is “How to Help the Violently Aggressive Child” by Dr. Ralph Ankenman. These adrenal symptoms are so common in POTS/Dysautonomias, but you have to know whether your surges are of the Alpha, Beta, or Bipolar Type to then know the best and right treatments to pursue. Right after these surges my son is indeed shaky and jittery and suddenly gets very sleepy. Overpots - I also appreciate your kindness and observations. The provider who refused to treat my son did mention psychiatry and also wrote a script for Propranolol, but there were/are other ways to approach this. I’ve been in many of these situations as a psychologist and always offer to set up separate meetings (later) with the family members to discuss what’s happening rather than leaving them stranded. Unfortunately, the psychiatrists that I know really lack knowledge overall and, in many cases, make people worse because they leave it up to guesswork. The same has been true with the neurologists. That being said we’ve had the best experiences with the family physicians, nurse practitioners, and cardiologists. You’re right about a Beta-1 blocker possibly being part of the answer but they also lower blood pressure and low blood pressure is one of my son’s most prominent and persisting symptoms. I’ve read that if you add an Alpha-1 blocker then that can help with the rages. You’ve got this cycle of Alpha Adrenergic Fatigue with persisting elevated norepinephrine levels leading to constriction of the blood vessels, low blood fluid volume, low blood pressure, cold extremities, dizziness upon standing, tachycardia, and exhaustion from being “wired and tired.” Here’s what’s tricky and confusing. The Midodrine helps tremendously (and this seems to be true for many people with POTS) and is an Alpha Adrenergic AGONIST. During the 2 to 3 hours this medication works my son has never had a rage or even a weird or strange mood. He’s close to “normal.” So, it’s confusing that a medication that stimulates this alpha adrenergic response can help but these other alpha or beta blockers are supposed to help by lowering adrenaline. Maybe the answer is that people end up having to take both of these kinds of medications simultaneously. We did try Propranolol for 4 days and my son had horrible insomnia and nightmares and actually ended up worse. That’s made us gun shy about starting any of the other adrenergic-blocking medications. I have already spoken with neurologists, psychiatrists, and even some autonomic specialists about this and they seem to have the “deer in highlights” look and cannot follow the line of reasoning. Plus, many of them have also never heard of POTS or Dysautonomias. And, it’s not like I’m in a rural town with less access to healthcare. My metropolitan area is just shy of 2 million people. The main takeaway from you and Random-Symptom Man is your kindness and genuine deep effort to understand and heal. I am very moved by both of your messages and shared them with my wife. She is also extremely thankful. You are right in that we cannot do this alone. As an aside, the first people to get the correct diagnosis for my son is a website called CrowdMed. What a tremendous resource. Thank you both for caring and sharing. I wish for your own healing. Let me know if I can help in any way.
  13. Hello Friends. I’m here writing on behalf of my 22-year-old autistic son who was recently diagnosed with POTS back in August. We are thankful to have a diagnosis, although it took over two years to figure out. I suppose we’re lucky because I’ve read that it takes folks many years and many misdiagnoses to get it right. We also have had our share of specialists who either lacked compassion, knowledge, or both. We have three main concerns for our son at this moment - chronic fatigue, insomnia, and severe aggressive episodes. He takes Midodrine, Mestinon, lots of salt and water, Clonazepam, and other supplements to help with relaxation and sleep. What’s most interesting is that, as we have increased his Midodrine his blood pressure rises and, when that happens, he seems like his old jovial self. The problem there is dosing because too much gives him headaches. Right now he takes Midodrine 7.5mg in the morning and at midday and 5mg in the mid afternoon and early evening. That’s 25mg of Midodrine total per day. His rage episodes are the worst I’ve ever seen in anyone - so scary for him and us as his parents. We take his BP several times a day and he never appears to have high BP. As we’ve increased the Midodrine, his blood pressures and mood sometimes approach normal. This doesn’t not look like Hyper POTS to us. It looks more like regular POTS combined with chronic fatigue. My take is that the chronic fatigue and persisting low BP leave his body in a position where it tries to counter that by over producing norepinephrine which, in turn, contributes to his rages. As his dad, this is heartbreaking because I feel like I’ve lost my sweet son who was never ever like this up until 3 years ago. We even took him to one of the top Autonomic Medicine specialists in the country (nearby and after a long weight) but, because my son had a rage episode while there (brought upon by fear) this physician refused to treat my son or see us again. While I somewhat understand this physician’s perspective, it was disappointing that he did not offer to follow up with us by phone or suggest a separate consult/meeting with us as his parents. In my own work as a psychologist I would never turn my back on a family in need. Thank you for any ideas and suggestions and also for your compassion and patience listening to what I have to say.
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