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Everything posted by RichGotsPots

  1. Tachy- back in 2006 when they diagnosed me with asthma they gave me Singulair for 3 months and I actually did get better but they stopped it since they didnt think it added anything. I did read the singulair and churg strauss warning thats probably the first time I heard of Churg, but I recently watched the Vasculities Symposium videos and on there the Mayo Dr. says that he doesn't think there is a connection at all. He says that it's just a coincidence that so Churg people with asthma don't know they have churg and then they are given singulair and later they find out they have Churg. Who knows...
  2. Hi Sarah, Welcome to the group! I have hyperPots and Orthostatic Hypotension. Is that what you have? I tried Mestinon and Florinef without and relief. i also have all sorts of breathing issues breathing. beta blockers made them worse. I have Clonidine but I wont take it until I get the hypotension stabilized. When I get a hypertensive crises I chug water slowly so that I can pee out the NE. I also take antihistamines and olive leaf extract both lower BP slightly. Keep in mind all POTS meds are bandaids they don't treat the cause. The first thing I think any Dysautonomia person may want to do is get a sweat gland nerve fiber density skin biopsy. Its painless and take 5 min. Neuros usually do it but any doctor can order a kit and do it in their office. That will say the extent of their autonomic sympathetic post ganglia nerve damage. If they can't get that they may want to try to get a QSART, even though it's much less sensitive. Then in my opinion people may want to get their doctors to order the Mayo Clinic Paraneoplastic panel. And try find top Rheumatologist, not local random ones, to look deeper at autoimmune causes. Blood is only positive in 50% of all autoimmune disease so do not rest because a dr says you dont have it when all they did was a blood test. Usually scans and biopsies are needed to really rule them out. It took me a year and a half to find out I have Sjogren's Syndrom an autoimmune disease. There is a group of 40 of us with POTS and Sjogren's in a group on facebook. I run a group on facebook with POTS and autoimmune disease and I have around 70 members so far in that group. The best way to knock pots into remission it to treat the underlying cause. It's not only autoimmune for example people with diabetes have it but I believe most have autoimmune disease. Also triggers are not the same as actual underlying causes. Rich
  3. Toporol xl made my breathing worse. All beta blockers are contradictory in asthma patients to begin with. Also BB lower blood pressure which I think makes breathing worse. There is only one med that lowers sinus tachy without bothering breathing but its not in America yet. Some potsies take it in canada and Europe and it helps, others don't like the side effects. A few ppl in America get it imported in, but none of my docs with write me a script for it.
  4. No one can tell how sick I am if they just met me or have only known me since I became very ill 2 years ago. But I lost 35% of my body weight and to me it's very noticeable. Sometimes I can look every pale when I am very unwell. But I get stares if I ride around in the motor carts in store, but I'm used to it by now
  5. I've been saying this for awhile and I think like Orthostatic Hypotension, POTS should be reduced to OT Orthostatic Tachycardia. But it's true that Tachycardia makes it sound like only a heart condition. I have two main belief for the future of our syndrome. 1. It will become a Rheumatological illness 2. It will be defined by types of autonomic nerve damage, for example: instead just autonomic neuropathy. They will say the patient has autoimmune Orthostatic Tachycardia with pre-parasympathetic gangliopathy.
  6. Yes I think I have talked about this issue on here a few times. Mine got extremely worse 8 months ago. So I switched to a Paleo Diet because I found dry foods were the main thing that made it worse. So I don't eat any grain at all, or dry foods like nuts, nut butters, potatoes, etc... Also if I eat starchy veggies I usually low cook them and it breaks down the starches so they are better digested especially beans. It really helps. The only time I get it now is usually if I eat too much and am so full. In my case it could be a number of things like stomach blood pooling, my Sjogren's which drys everything out or it could be inflammation. Surprisingly I don't have any trouble with fish, eggs or meat. So I eat 80% fruits and veggies, 10% proteins and 10% starchy veggies for carbs. I don't think it is an allergic reaction at all but if it's an overactive immune response it could be inflammation. Also could be a hiatal hernia on top of the other things that isnt helping the situation any.
  7. First thing you need to see a cardio to rule things out and make sure its only POTS. A friend of mine who has hyper pots had a heart attack 6 months back. There is also something called MicroVascular angina/chest pain http://www.heart.org/HEARTORG/Conditions/HeartAttack/SymptomsDiagnosisofHeartAttack/Microvascular-Angina_UCM_450313_Article.jsp The singer Toni Braxton had it. Its diagnosed with an exercise MRI, thats what the top MicroVascular doctor at John's Hopkins told me in an email. Be well, Rich
  8. Good thing they never tried DDVAP on you, it retains urine to inclease blood volume.
  9. Never mind I see it says settled for $1 mill wow
  10. Here is another link but you need a subscription to see the full case http://masslawyersweekly.com/2013/09/25/college-denies-handicapped-student-medical-coverage/
  11. Since she theoretically could inject herself with the med it's not ivig or plasma, its more likely a blood volume expander like hemocrit or Octreotide. I think they cost around that much each injection. Is $1 million what she was filing for or was it the amount she won or both?
  12. Corina, Thank you! looney/Rachel, Thank you! To answer your q. About paraneoplastic panel from Mayo, I have not taken it but I have known about it 2 years now, but no doctor around here wants to order it which is so wrong. I think it needs to be standard protocol. I believe 80% of all POTS is autoimmune related and that it will become a rheumatologist disease eventually and that all pots wacky symptoms are do 100% to autonomic neuropathy. We have different symptoms depending on the type of nerve damage. POTS will be like a subset of Guillane Barre. Also I know about 30 people who had that panel done and found antibodies and got IVIG from it. Some had AAG and some had LEMS or other autoimmune illnesses. Eventually they will had twice as many antibodies on that panel as they keep finding more and more. KatyBug/Katie- thank you! Kthe orphan drug is Mepolizumab (proposed trade name Bosatria) is a humanized monoclonal antibody that recognizes interleukin-5 (IL-5), and is used to treat certain kinds of asthma and white blood cell diseases. Alex- Thank you! i will for sure update everyone after my appointment in 2 weeks. Sue- thank you! Chaos- thanks! I promise even if I recover completely I will keep up my research for the sake of the whole group badhbt- probably a few hundred hour of research in the last 2 years. At times I got burned out I couldnt look at studies for a couple of months lol for someone who would never do this in his whole life I really had to learn to read medical termonology and read between the lines. A lot of conclusions in studies are theory and I don't always draw the same conclusion as the researcher. Only person who I think can relate is Rama. He has been at this many many years and he also doesn't have a medical background. When I first started talking with him, like many, I thought he was a doctor or scientist lol I like to be the driver of my own destiny but illness takes that away from us, so over the years I found that knowledge and research gives me a little bit of that back. Spinner- Thank you! I never thought about having to become my own doctor but this journey certainly forced me down that path and now with all this newfound medical knowledge I try to put it to good use for others. I must have looked into over 200 illness very deeply and maybe another 200 briefly. I was never interested in science so naturally I wasn't inclined towards medicine but all that's changed because our medical sysmtem is seriously flawed on so many levels. If I get healed I am thinking of going for a masters in public health to change the whole system. I used to be a journalist at one point in my career and maybe I will write about about the mess we call a medical industry or else maybe a few articles at the least. I have seen nealy 35 doctors in the last 2 years and about ten were well intentioned but only about 3 were well informed. There is no one size fits all in medicine but sadly thats how they treat us. Dysautonomia is a great example of how we are all different in so many ways. My feeling is that you have small fiber autonomic neuropathy and not Fibro at all. I will for sure update everyone after the visit, thanks everyone for all your well wishes! Rich
  13. Hey Tachy Phlegm, my asthma used to be controlled with very high doses of inhaled steroids, this time around when I ended up in the hospital in 2011 they gave me inhaled steroids and IV Prednisone which helped maybe 15% but then out of the hospital they told me to taper. But I suspected either autoimmune or neuromuscular back then and made this pulmonologist give me a bunch of prednisone. i took about 50mg for about 2 months but it didn't help. For Churg Strauss a lot of people become resistant to steroids alone. Also since I have autonomic neuropathy I really think steroid don't work like they should. I read a Cleveland clinic study that said that was 100% true for Sarcoidosis patients, which is also an autoimmune disease. And in that study they said IVIG helps 66% have a complete recovery.
  14. Hey Alex, I got Melatonin for my ex gf to help her sleep and it worked like a charm. So I got it in 1mg dropper form for myself. i got to sleep around 7am and wake up 3pm. It is awful especially in the colder months, I see no sunlight. I have been too chicken to try it since I have orthostatic Hypotension and read a pots study that said it lowered BP. Rich
  15. If anything climbing stairs would be better circulation then lets say running because the activation of your leg muscles is supposed to return the blood to your heart faster. Do you ever just lift weights? Perhaps it's due to lactic acid build up from the lifting not so much just the incline. May of us report that when they over due it with any physical activity it can cause a flare. For example some marathon runners are fine then they start really pushing it in the middle of a contest and boom they flare. Swimming is by far the best physical activity for us because the water pressure act as a mild G-suit.
  16. Nicotine is a parasympathic activator that's why it has a calming affect if anything it should lower blood pressure so if cigs raise yours then its probably an added ingredient. Caffeine is a mild sympathetic stimulant that's why it raises blood pressure. There have been studies on it and actually decaf coffee raises blood pressure aoutnthe same so they think there is another chemical besides caffeine at play. Also what's interesting is that habitual coffee drinkers decaf or not become immune to the blood pressure raising affects. The only caffeine I drink is white tea.
  17. I have recommend this on here over a year ago because it can see perfusion in the blood. But the way it should be done for dysautonomia is both laying and standing to compare.
  18. @foggy 01 how are you feeling these days? A pulomologist I recently saw told me he doesn't think its autonomic nerve damage because in lung transplants patients get all their autonomic nerves destroyed. So I asked how do they breath then? He didnt say anything. But that made me wonder. I think the nerve damage still could be be reason because nerves are constantly regrowing and in transplant patients with normal nerves the nerves probably instantly start growing around the transplant but for us something is blocking them from growing. And this constant regrowth probably explains why some times are better than others and why some recover. I have found out that I have Siogren's syndrome on top of my autonomic neuropathy, just recently. I know 40 other patients with pots and sjogren's Sjogrens can cause nerve damage and it attacks exocrine glands that secrete saliva or moisture products, so maybe deep down the alveoli are getting dry and stiff. I am getting an evaluation for Churg Strauss Syndrome in 2 weeks and that is an inflammation of small Blood Vessels. 95% of patients have late on set asthma and 75% have sinus issues.
  19. Welcome! POTS is not just a racing heart rate but an increase in heart rate of more than 30 beats/min from the laying position to the standing position. A tilt table test makes the testing more objective. But if you have a pulse ox or a good continuos heart rate watch you can do this your self, then have it confirmed with a tilt test. Lay flat for 10 min, then stand up slowly for 20 min in one spot. Make sure its a quiet place with no TV or radio or other people talking to you. If you can take you blood pressure every 2-3 min, so have a clock in front of you. I never knew that I also had a drop in blood pressure too because in the dr office they tell you to stand but take the blood pressure right away. On the tilt table it took 5 minutes for my blood pressure to fall over 50 points in one shot. It started at 122 systolic, then when titled up went to 144, then after 5 min. It all of a sudden dropped to 90. Also I had my BP taken on a pulmonary stress test where I walked and then within 2 min it fell that low.. So often there can be a delay. If you test positive on the tilt table test, then see a special neurologist about getting a sweat gland nerve fiber skin biopsy for autonomic nerve damage or a QSART. Good luck!
  20. Many of you know me for two year now and it has been a long down hill battle against POTS, IST and Orthostatic Hypotension. I diagnosed all this on my own then went to 2 different specialist who confirmed it. It took me about a year to finally get a skin biopsy for autonomic neuropathy which showed I only had 19% of my sweat gland autonomic nerves. Then 2 months ago I finally got confirmed for Sjogren's Syndrome and autoimmune illness. But after talking to so many Sjogren's people I found that Sjogren's just didn't help to describe my breathing problems. My Sjogren's Rheumatologist happened to do a detailed White Blood Cell Count for Neutrophils, Baso Phils and Eosinophils. My Eosinophils were 3-4x as high as normal and my Sjogren's specialist didn't think that was remarkable so I kinda of forgot about it. Well two things came together for me. The first one was I was researching a giant chapter in a book that lists each and every cause of neuropathy broken out by types of neuropathy. The autonomic section is brief and does not mention vasculitis. But I was just browsing the other sections and I came accross Churg Strauss and it said high Eosinophils were a classic sign. BINGO!!! So I double check my Eosinophil labs and looked up the normal values and mine were sky high. Well that's one symptom in the criteria. The other thing that came together was I openned an old laptop I had and I had old documents on it I used to bring to doctors when this first started and on one of the documents was a list of breathing conditions that could be causing my problems and what do you know Churg Strauss was at the top of my list, hut my pulmonologist back then blew off everything on the list. Okay so here is the criteria for Churg Strauss all put together. There are 6 criteria and 4 are needed for a diagnosis, just like with Sjogren's. I had 4 out of six in Sjogren's. Now I already have 4 in Churg Strauss. 1. Late on-set asthma that can become uncomtrolled with to prednisone or pulmonary infiltrates-got it at 27 and its not controlled anymore like it was when I was 27 2. Sinus problems- in 20008-2009 my sinuses were so bad I couldn't breath through my nose at all, couldn't taste anything or smell anything so I had surgery to have my sinus polyps removed, but still gives me trouble. 3. High blood Eosinophils- as mentioned above 4. Peripheral Neuropathy- I have autonomic Peripheral Neuropathy, its not typical so I will have to see if the specialists accept this one 5. High Eosinophils in any biopsied tissue- never had this before if they would have known in 2009 maybe they could have biopsied the polyps 6. Necrosis of any organ- this usually is life threatening and the final stage of the illness The illness usually starts in stages. 1. Asthma and sinus stage. 2. high eosinophil stage 3. Necrosis stage There are other issues associate with this illness. It is an ANCA antibody vasculitis like Wegners but only half the people have positive ANCa in Churg Strauss. There can be inflammation in the heart, lungs, kidneys and Gastro system. The most famous person who had it is Ben Watt from the band Everything but the Girl. They caught it late for him and it destroyed 80% of his colon but he is alive and way better now and alive with 3 new kids after 10 years or more. It just so happened one of the top Vasculitis doctors moved from Boston to Philly only 90 min away 3 months ago. I am going to see a dr he hired in 2 weeks because he didn't start taking new patients yet. Wish me luck! I'm hoping this gets me IVIG and I found a new drug that has little side effects for treating it before they used high dose steriods and a chemo drug in combo and then mexatrexate after that to maintain remission. This new drug is not as toxic and just got orphan status approval by the FDA. Your friend, Rich
  21. Wow Alex! I just saw this post for the first time. I am so glad you finally got approved. i have been trying to for months. I have autonomic neuropathy and Sjogren's like Lauren Stiles, but I am beginning to think my Sjogren's is secondary to Churg Strauss. Once I get my Rheumy involved I think I will get approved too. The only thing is the protocol is more like Guillane Barre then AAG. They actually might alternate Plasmapheris and IVIG. Glad you made it threw your first infusions. High dose steroids are great for autoimmune too so that can't hurt. The only thing I would ask add to your pre load before infusion is IV Saline for extra hydration. If you are on facebook there is IVIG groups. Also Primary Immune org that arizona mentioned has a medical guide for IVIG infusions because that community gets it the most. I know a guy who has been getting it for 30 years every month and never even used a port. He is on one of the forums. It all depends how much /KG you get but most ppl I know take 6-8 hours. Also for diabtics there is a type without sugar in it. Also if anyone can't take it any more as mentioned above then they can always try out plasmapheris. That is your own blood being taken out and filtered of autoantibodies and then infused back in... Works very similiar to IVIG except it can only be done in the Hospital. Both AAG and CIDP ppl get this or both. Also I found a research paper that said you need to test for IgG level right before and after. They found that if your IgG levels didnt rise substantially from before levels then it need to be given at higher dose or else its not affective. I dont have the link to the article right now as its 5:15am lol but maybe another day I will post it here. Prayers it starts working soon. If I get it for Churg Strauss it is 2g/KG and I alternate with Plasma :-x
  22. Those are from this http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1221991/pdf/11463332.pdf
  23. NOS INHIBITORS There are a bewildering array of NOS inhibitors described in the literature and in use as pharmacological tools. Of these the most widely used have been -NMMA, -NNA and its methyl ester prodrug (N G-nitro--arginine methyl ester, ‘ -NAME ’) and aminoguanidine. Table 4 shows the efficacy of some of these in inhibiting the three human NOS isoforms
  24. NOS inhibitors may have very different effects on biological systems depending on whether they inhibit the syn- thesis of both NO and other species [e.g. NG-nitro--arginine (-NNA) on nNOS] or not (e.g. -NMMA on nNOS)
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