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Everything posted by p8d

  1. Yep, I had this very badly shortly after I was diagnosed and it got terrible on my TTT. I saw a gastroenterologist that works with dysautonomia patients who works with my neurologist. I can’t take omperazole or anything in that class due to side effects. After an endoscopy I was told it was neuro/ANS and put on gabapentin because every time I ate it felt like I was eating glass. I lost 25+ pounds and was hospitalized and put on TPN for 6 weeks so it’s nothing to mess about with if it’s impacting your ability to eat enough. After a few years on gabapentin I slowly (critical) decreased the dose
  2. Yes but I was switched to carvedilol for better BP control and it has some alpha blocking too, that was over a year ago. I also take guanfacine ER for alpha blocking. I still think for a beta nebivolol was my favorite. It didn’t cause palpitations or fatigue like the others. It’s cardio selective.
  3. My dysautonomia cardiologist left the state and while there is a nurse practitioner who worked with him with dysautonomia patients I am notoriously difficult to treat (supine hypertension/orthostatic hypotension/hyperadregenic POTS/autoimmune disease all of which the cardiologist was familiar with). I sought out a regular electrophysiologist. He told me that I was better off sticking with the NP that understands dysautonomia than seeing him. At least he was honest.
  4. Hi Kim,

     I don’t want to post this publicly so I thought I would send you this in a message.

    I started LDN at 1mg increasing by 1mg/week and got to 3mg/day for a couple of weeks before stopping for a week before and after my second Covid vaccine. I am titrating back up 1mg/week and just hit 3mg/day yesterday. My max dose is 4mg/day. I did get insomnia and weird dreams after starting for about a week and after increasing the dose for a couple of days but it’s had an amazing, and I mean amazing effect on my autoimmune and dysautonomia symptoms. Once I hit 3mg/day for a couple of weeks it brought me out of an AI flare that had been going on for 6 weeks and it’s stabilized my BP like north has ever. My BP after being upright for several minutes is around 125/80 HR around 70-80s and sitting reclined is around 138/80 HR 60s. I don’t know if it’s helping with fatigue which is my biggest problem at the moment because I haven’t gone anywhere and haven’t done much in several months. I am also on SCIG and Plaquenil but my theory is that the LDN crosses the blood brain barrier and works on neuro inflammation and maybe the CNS (I react better to CNS meds). My cardio NP was not at all surprised by the stabilizing effects (neurologist prescribed LDN they are in the same system/clinic) and said many of her patients have reported the same thing. My advice is get a lower dose, 6mg is too high. Start slow and titrating up. If you have a Dr that will prescribe it I would think they will send it to a compounding pharmacy for you. 

  5. I had my second Moderna shot almost two weeks ago now. I had a headache the day of and the next day, fatigue, malaise, probably a low grade fever (I didn’t check) for a couple of days but almost exactly 48 hours after the shot I was feeling better. The third morning I was back to my normal. No flare in dysautonomia symptoms except a very slightly higher HR (10 bpm above my usual upright) during the first 48 hours. I have healthy family members who had worse reactions. All my specialists recommended it and I followed their advice.
  6. I have been on this twice. I don’t remember why I stopped it the first time but probably because I developed hypertension which is now only when supine. I don’t know about the discount card but the first time I started this I got it from Canada. It was easy, I just needed a paper prescription and not terribly expensive. My insurance covers it now. I stopped carvedilol recently in the mornings and only take 2.5mg of ivabradine. Even that caused palpitations for a week or two. I found starting at a low dose and working up slowly effective or the palpitations were awful. I take carvedilol in the
  7. @JFBMight The rheumatologist Be willing to let you try plaquenil for a few months (it takes that long to work) or a short course of steroids to see if it helps? If it does it should indicate an autoimmune disease and then they might treat for sero negative autoimmune disease. Some Drs will do this, many won’t.
  8. @JFBLyme and autoimmune diseases are differential diagnoses. Have you been checked by a rheumatologist for any autoimmune diseases? I was misdiagnosed as having Lyme and was treated with a load of antibiotics that did nothing when in fact I had an autoimmune disease (or a few). Once I started treatment for the autoimmune disease I improved and the low grade fevers are a rare sign of a flare now. Just FYI you need a really good rheumatologist that won’t say you don’t have it based off the lab work alone which is what most do. After many years of suspecting I had autoimmune disease and many ANA
  9. Thanks to everyone posting about this. I had my first Moderna vaccine last month and the second is this coming Sunday. I had increased fatigue and a sore arm for a few days. I increased my supplements per Dr Klimas before the first shot. I spoke to my cardiology NP this week and asked about her dysautonomia patients responses to Covid and the vaccine. This is a clinic that treats 300+ dysautonomia patients and she said that none of the patients that had had Covid have returned to baseline and that she only had one person question a flare induced by the vaccine.
  10. I am so sorry that you are struggling with this. I am 59 years old and have been in full blown dysautonomia for 6.5 years. Like you, I find it increasingly difficult to deal with stressful things as I get older and have noticed that my healthy family/friends also do so. Maybe it’s part of aging to some degree? I have hyper POTS, OH, extremely labile blood pressure (supine hypertension, OH), autoimmune disease etc. This past year has been a very anxious one for me. I find an alpha blocker for the excess norepinephrine, exercise, nature, hugs, dogs, weighted blankets, just having a prescription
  11. Anybody else with autoimmune disease get a flare of that and dysautonomia from sunshine? We finally had some lovely spring weather and sunshine the other day and I spent a few hours outside and everything started flaring the next day. Fatigue, joint pain, low BP, high HR, malaise etc. I know it can cause lupus and RA to flare but I am not aware of it causing POTS to flare. I am also not aware of it causing me to flare :^(
  12. I take 2.5mg/day but it definitely has an adjustment period. I had bad palpitations for several weeks and the higher the dose the worse it is. It definitely helps my HR.
  13. While this is a very small study it is good news for those of us with autoimmune diseases https://creakyjoints.org/living-with-arthritis/covid-19-vaccine-inflammatory-disease-antibodies-study/?utm_source=GHLF+COVID-19+Support+Program&utm_campaign=17d672e5f8-PSP_realtime_59&utm_medium=email&utm_term=0_e0b05b1451-17d672e5f8-233526025
  14. I have some anhidrosis and SFN and had the flu (mild, I had had the vaccination) a couple of years ago and the symptoms were all there, achy, fatigue, fever but I don’t recall sweating being an issue. I do sweat in some places so I figure I will sweat there if I need to.
  15. Keep getting ANA tests if you can. I was tested roughly every 5 years for suspected AI issues and they were always negative. After I developed dysautonomia I was tested 3 times in 18 months before one came up positive. The tests really aren’t terribly reliable and that’s why a good rheumatologist will treat based on symptoms.
  16. I, too, tested negative for MCAS but take quercertin and singular daily. I recently started LDN for pain (from a compounding pharmacy) at 1mg the first week and working up by 1mg/week to 4mg. On the advice of the pharmacist I had to stop it for a few days before my first vaccine and then stayed off it for 4 days and restarted at 1mg/day for a couple of days yesterday. I will increase every few days back to 3mg/day which is where I was before the shot. I have not noticed any difference in my dys symptoms but my inflammatory arthritis, migraines and a trigger finger have improved. Cause and effe
  17. @dizzytizzy The first rheumatologist I saw said everything was fine with my labs (there was some weird results that he didn’t interpret as abnormal) but did offer me steroids. I refused him but my then PCP offered a medrol dose pack that really helped. 24 months later when an ANA came up positive with autoantibodies my PCP recommended a different rheumatologist who is wonderful and treats based on symptoms not just labs. Can you ask this wonderful dermatologist for a referral? She might know a sensible one. The dermatographia sounds like MCAS. Maybe she can recommend an immunologist? I have f
  18. @PistolAny and everything Covid as a topic. Experience about people who have had it, vaccine info/reactions, mitigation strategies for the vaccine etc. I think we are all interested in this.
  19. @Sushi Thank you for posting Dr Klimas’s advice. May I ask how severe your MCAS is? I have increased some of my supplements and plan to take Zyrtec anyway but I think I have a relatively mild form of it.
  20. @Pistol that’s wonderful! I am happy for you. I have always thought that dysautonomia is an autoimmune disease, it is wonderful to see so much research starting to show it. After several months on plaquenil for post POTS diagnosed AI disease it was the first drug to help with fatigue/joint pain/malaise. I did have significant diarrhea for a couple of years but stuck with it. SCIG helps even more and I recently started LDN for the neuro inflammation and pain, joint and migraines, that the other two don’t help. I still get flares of quite bad joint pain and fatigue which is why we started L
  21. I am so sorry that you are going through this. I tried powering through in the beginning and ended up very, very much worse. When I hit the point where I prayed to die every single night and my body wouldn’t (I was extremely ill, just out of hospital with severe malnutrition) I finally *decided* that I had to do everything within my power to get better and never go backwards again. That meant getting home physical therapy for 2 years followed by 2 years in person, trying every drug available, compression stockings every waking moment, 3 liters of oral rehydration solution and after 18 months f
  22. I was just prescribed LDN for inflammatory arthritis/pain/migraines/autoimmune disease and dysautonomia (autoantibodies to alpha a-1 receptors). I likely have a low level of MCAS but not officially diagnosed with it. I am wondering if anyone has any advice on starting/side effects of LDN? I am starting with 1mg daily and increasing to up to 4mg over several weeks if needed. I am not on Facebook and know to expect vivid dreams at first but what else? TIA.
  23. I have standing orders for PRN IV fluids from my neurologist and when I showed up at an urgent care clinic to get them the PA flat out refused to give them to me. He knew nothing about dysautonomia and said that the risk of infection was too great. This was after 5 days of diarrhea and I weighed 88 pounds. I was hospitalized a week later. If we have the orders they should not second guess our specialists! After that experience I simply won’t call for paramedics or go to an ER unless I am in complete fear for my life.
  24. I can’t do any type of breathing exercises except for maybe two breaths or a few minutes without getting very symptomatic. Mindfulness meditation, no way—I get tachy and anxiety and I have no idea what my BP does. I have a HRV device that you breathe to a Mandela and I do really well for about 3-5 minutes then all h*ell breaks loose, not only in HRV but how I feel so it’s definitely physiological because I can see it in the device. I think for some of us this causes sympathetic overdrive symptoms. I tend to do better lying down or sitting in my recliner and distracting myself with a book or cu
  25. Oh @PistolI am sorry that you are flaring. I also get weakness when I flare badly enough. I have been flaring lately, not just dys but also my autoimmune disease and have had a lot of weakness, joint pain etc. I think it’s partly the weather that’s doing it. Hang in there. Sending good thoughts your way.
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