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Everything posted by CJ65

  1. Thank you @Chiara. Yes I’m aware of the dangers and I won’t do that again 😬
  2. Thanks @Pistol. Yes not ideal, I did wean a bit. Interestingly this is the 3rd major POTS center that had me hold meds for testing. Now I need to know your secret to getting off Guanfacine!
  3. Hello Im enrolled in a POTS exercise study and had to be off meds (Guanfacine and Propranolol) for the assessment. It has been a while since I’ve done that and I felt so sick. My BP was up to 220/126 and HR in 150s, couldn’t sleep, the “buzzing” and pain were rough. How do you all get through situations like that? Ill have to repeat it again and would love some tips. Thank you
  4. I’m so sorry you are going through this! I ended up hiring 2 attorneys, one for SSDI and one for my long term disability insurance company because I was denied multiple times. Regarding SSDI almost everyone gets denied the first time so keep at it. It is worth having a discussion to see what your options are. I am not sure what the rules are in Ohio so check before proceeding but in California if you hire an SSDI attorney you won’t have to pay them unless you win and then it is a max amount of $6000.00 which comes out of your retroactive pay. Private disability insurers will challenge your case and deny so if you can do it hire an attorney. I finally hired one after 2 years of trying to do it on my own and it was the best thing I did. At the very least they can advise on the best course of action. They also take over communication with insurer so you can focus on your health and not increase your stress level which makes you sicker! There are resources on DINET about disability that are helpful. Feel free to message me if you have questions. Good luck!
  5. @Bobannonif it makes you feel better I was also sent to cardiologist when I first got sick who was an EP and she told me I couldn’t have POTS because my BP rose when I stood. To her credit she called me that day to take back that statement. Then she referred me to autonomic specialist (9 month wait), prescribed clonidine and sent me the Levine exercise protocol and told me to do it with absolutely no instruction. Fortunately my primary manned the ship while I waited to go to Stanford and she and the cardiologist communicated directly with Stanford for guidance while I waited to be seen. Fortunately appointments opened up and I got in in 6 weeks with a different clinician. Call the office and ask if they use a waitlist for cancellations. Ask your family doc if she can communicate with EP and like @Pistol said give your primary a list of exactly how you feel. Use concrete terms and data like your HR and BP readings, changes from your baseline etc. You described it beautifully in your post. Doctors are constantly under time pressures so clear cut info helps them. If you are feeling worse don’t worry about being a squeaky wheel. Good luck!
  6. Hi @Bobannon I don’t have answers for your excellent questions but I do want to say that the diagnostic process is absolutely anxiety provoking, and I think everyone here has felt it at one time or another. It’s so hard to get thoughts organized when your body is working hard to stay upright. AND trying to get your questions answered during a time-limited face to face with your provider! Can you email a list of questions to the different docs? I imagine your heart rate decreasing is because of the beta blocker doing what it’s supposed to do. You didn’t mention blood pressure-do you know what is happening with that? Can you monitor it at home? Some POTS patients respond well to beta blockers and some don’t at all. It does take some time to adjust so you may need to see if your symptoms improve. Feedback to the prescribing MD is important so they can adjust dosage or medication if needed. It’s a lot of trial and error to find the right medication and treatment regimen. I think your visit with autonomic specialist will be very helpful. Hang in there and keep reaching out to your medical team and to your POTS community!
  7. @MTRJ75 I’m so glad you brought this up. I started having glucose instability when I started propranolol last summer. If I eat carbs in morning like cereal I absolutely crash about an hour later with post prandial glucose in 50s and diarrhea (sorry TMI). Needless to say I don’t do that anymore. My doctor said it is reactive hypoglycemia but it definitely came on with propranolol. It also feels like dumping syndrome but endocrinologist said no. My A1C is normal. Now I only eat protein first meal and i eat before i get hungry, it’s helping. That is interesting that eggs make you symptomatic too…
  8. @POTSie78 I second everything @Pistolsaid! I really thought that I would be able to go back to work and fought my body which made everything worse. SSDI and approval for LTD can take some time so I would go ahead and start the process. Do not be discouraged if you are denied, it sometimes takes a few denials before you are approved. I found a website dedicated to the process of getting on disability specifically for invisible illnesses: howtogeton.wordpress.com LOTS of good information. It really helped me organize myself. I think that whether your LTD insurer still pays you if you get approved for SSDI is dependent on your policy. In my case I still get LTD and SSDI but the LTD if offset by what I get from SSDI. I hope that makes sense. Please reach out if you have any questions! Start getting your medical records together now, ALL of them so you know what is in there and breathe…you will get through this.
  9. @Knellie thanks for the info! I see Dr Jaradeh at Stanford so I look forward to the video! In my experience assisting with spinal taps, csf is always clear and “straw” colored unless it’s bloody or infected. Does your leak look like that? Testing it is a great idea, thank you. Very interesting about IIH too. What would I do without the POTS community ??
  10. Hi @Knellie yes elevation is a bear for me, you are not alone. Its also hard for some people with no other health issues. I get some of the symptoms you describe when I go to Tahoe (6000 ft) from Bay Area. 10,000 feet is way up there! People who live at higher elevations adapt to that environment over time and develop higher levels of hemoglobin and number of red blood cells (hematocrit). The body also gets better at hanging onto oxygen in low oxygen environments (oxygen dissociation). At sea level we breathe 21% oxygen and at 10,000 ft it is equivalent to about 14%. It is no wonder that your saturation was lower. The bottom line is you need time to adapt and work your tolerance up slowly. The good news is once your body adapts and you have changes to your red blood cells those effects last and your RBCs have “memory” as long as those cells live which is about 120 days. This info is available in many reputable places online. I have used research from The University of Colorado when I taught about oxygen carrying capacity for the fetus and newborn. Lots of good research there. I’d love to know more about your nose issue because in the last few months mine also runs uncontrollably on right side when I’m upright and active, it isn’t allergies. What the heck is that??
  11. Fantastic letter. I saw Dr Biaggioni and send him questions from time to time which he or his NP answer. Have you asked them about Northera? I’m sure they could give great input. Best of luck
  12. @racingheart77Are you talking about Takosubo syndrome? I teach/taught about this in regard to grief. It is a documented form of cardiomyopathy. I have not heard about this for POTS patients in general. This may be a trigger for anyone experiencing loss but I will provide an example. My friend lost her newborn son. She knew he had a lethal condition before he was born. After his death she had chest pain and her arms hurt for months. She had Takosubo syndrome. One day they were planting a tree for him and her dad handed her the pot with the tree. It weighed about 8 lbs. Suddenly her arm and chest pain went away. She was literally aching for him. She created a program called the Comfort Cub which are weighted bears that moms could hold and take home so their arms aren’t empty when they leave the hospital. They are now used for all kinds of grief and trauma. So Takosubo is a very real manifestation of grief.
  13. @CallieAndToby22 I’m so glad you are feeling better (at least from the vaccine standpoint)!
  14. @MTRJ75 I love your questions and the way you group the possible mechanisms of action. I am an example of actual physical damage leading to POTS. During my cervical spine surgery my 9th cranial nerve -the glossopharyngeal nerve was damaged. This nerve ennervates parts of the throat, posterior tongue and carotid baroreceptors among other things. My efferent (motor) pathway coming from the brain works so I can swallow etc. It took 2 years for me to realize that I had no gag or feeling in my right throat. A scope showed my afferent pathway was damaged. The same pathway that comes from baroreceptors back to the brain. My brain thinks I’m bleeding out so it throws sympathetic NS into overdrive. It’s not baroreflex failure but definitely impairment. So when people tell me I can rewire my brain I want to know: if the nerve is cut and hasn’t started working in the last 5 years how the heck can that be rewired? I don’t believe it can. And so I slip into the acceptance that this is as good as my health is going to be: limited, chronic and I try to find joy and hope where I can.
  15. Yes. My pain is more inflammatory in nature to joints and pretty bad myofaschial pain to upper back. Definitely worse after sitting and when I do too much. POTS and all of my issues started after cervical spine surgery. Unfortunately I still had pain in my neck and arm post op plus the new added hyperPOTS bonus. I have tried all the pain modalities with some relief that makes it bearable for the most part. That includes: mindfulness, ice, heat, acupuncture, massage, trigger point injections, epidural, TENS unit, foam roller, Qi Gong, yoga, PT, cymbalta (I had very bad serotonin syndrome reaction and horrific withdrawal before I knew I had hyperPOTS), NSAIDS (can’t take anymore because of my BP), Gabapentin etc etc. What helps me most daily is gentle movement (my PT says “motion is lotion for the joints), resting as needed throughout the day (if I push through fatigue and don’t rest all of my body hurts-listen to your cues), and when it gets worse later in day I often take Tylenol or Tylenol with codeine. I’m not advocating for opioids in general but I've been taking the same low dose for a few years now without a problem. Probably the most helpful thing was early retirement/disability. I fought doing that for 3 years because I loved my career but in the end it was the best thing to do for all of my symptoms.
  16. I have Hyperandrenergic POTS and I had Pfizer. I expected the worst and except for a little extra fatigue and a sore arm I was absolutely fine.
  17. I take 5 mg THC indica edibles to help me sleep through the night. It is legal in my state (CA). I haven’t noticed any relief with plain CBD although CBD/THC combos do work for me. The great thing about dispensaries is that you can talk to the “bud tenders” haha and tell them what your issue is, tolerance level and desired outcome and they will help find the right product/strain for you. It’s trial and error. I do love seeing the clientele in the dispensary: all ages, all health levels.
  18. @tandori you are absolutely right about newer data showing that masks help. I spent my career in an academic medical center nicu where we told staff and visitors that if they were sick enough to ask for a mask then they shouldn’t be there. That is still true. We 100% wore/wear masks to protect patients in sterile/surgical settings. And we do wear them when we know the patient has a documented infection. We believed that mask wearing in general can give a false sense of security. Masks get damp/wet with normal breathing and we always touch the masks to adjust them then go touch something else potential spreading bacteria/viruses. Hello hand washing! There really weren’t any studies on global pandemics but now we have data on millions of people and we know that masks and social distancing work. Look at the low number of colds and flu last season. I’m with you, I will still wear masks especially during cold and flu season and to protect myself and my family from variants. POTS and illness is a bad combo.
  19. Hi Muon I came across this article from last year by Dr Miglis at Stanford. Is Postural Orthostatic Tachycardia Syndrome an Autoimmune Disorder? And Other Updates on Recent Autonomic Research https://link.springer.com/article/10.1007/s10286-019-00661-5#citeas Not exactly summer reading but very interesting. There is some discussion about specific andrenergic receptors and clinical significance/expression.
  20. I get it if I really push myself physically. Thanks for bringing it up, I thought I was the only one!
  21. Hi @CDNPortGrl I should have clarified that the post spinal pain is all headache, caused by leaking csf from the puncture site. When the normal pressure bathing the brain in csf drops = wicked headache. It’s not supposed to happen with epidurals but sometimes it does.
  22. That’s great to know @Pistol. I do allude to long haulers when I explain what POTS is to family and friends. Even my closest people’s eyes glaze over when I try to explain my illness but now that most of them have read about long haul Covid they seem to understand now that healthy people can turn into chronically ill people in a flash.
  23. @CDNPortGrl when you had the blood patch was it because you had terrible headache after spinal anesthesia? In my limited experience being around post partum women with blood patches (I’m NICU nurse), it seems like that type of leak reoccurrence would cause pain. Is that correct?
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