Jump to content

Miraclemaker11

Members
  • Content Count

    15
  • Joined

  • Last visited

Community Reputation

0 Neutral

About Miraclemaker11

  • Rank
    Member

Recent Profile Visitors

The recent visitors block is disabled and is not being shown to other users.

  1. As always Pistol, you are on target (pun intended). This is so very helpful. I figured that Guanfacine and Midodrine worked on different types of alpha receptors and this explains it best. Thank you. The next thing I’m wondering about is whether or not it makes sense for my son to take both Guanfacine and Midodrine simultaneously. I really hope and pray that the Guanfacine helps with his aggression. Here’s wishing you the very best in your quest for greater health (and humor).
  2. Dear Friends. I’m hoping for some insight and help on this question. My son has been taking Midodrine for his POTS and this seems to help increase his energy. We are going to start him on Guanfacine ER tomorrow to help with his adrenaline surges/aggression. Where I am confused is that both Midodrine and Guanfacine appear to be Alpha Receptor Agonist except that Midodrine constricts the blood vessels/raise blood pressure whereas Guanfacine dilates the blood vessels and presumably lowers blood pressure. How is this possibly since both of these meds are alpha receptor agonists? My son alrea
  3. 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
  4. 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 abou
  5. 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
  6. 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
  7. 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!
  8. 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
  9. 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 r
  10. 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
  11. 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
  12. 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 autoi
  13. 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
  14. 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
  15. 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,
×
×
  • Create New...