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Everything posted by ANCY

  1. I can look back on my childhood and see evidence of dysautonomia. Probably the biggest thing is that I can remeber from around age 4 I thought it was normal to black out when you stood up after touching your toes. I thought it was normal so never said anything. There are times that looking back I was very close to loosing consciousness but never did fully. I always liked things tight, like a compression garment, and constantly was sitting on my legs, still do as a way of helping my bp. I also consumed tons of salt on my food and drank 2-3 times as much water as my brother and sister. I had stomach troubles as well but mostly chalk those up to the very frequent antibiotics to treat recurrent ear infections.
  2. I live in Peyton Colorado, just outside Colorado Springs at 7,369 ft. We travel frequently into the springs for dr appointments etc which is about 1,000 ft lower. I always have some difficulty coming back if I spend longer in the Springs, IE hospital stays. Whatever symptoms I get from it are only slight but makes me feel lethargic and fatigued much quicker than my normal. What we have observed is when some people come to visit Colorado from low elevation they experience altitude sickness for a couple days. Others do not. Not sure exactly why some are affected and not others... Water is your best friend for dealing with altitude, also not jumping straight into strenuous activity. My Aunt who does Triathlons had trouble with shortness of breath just walking around Garden of the Gods. I hope that you are one of those people that don't get hit severely and you are able to enjoy your trip!
  3. I didn't notice any benefit for a month when i first started. I second Clb75, it is only as effective as the fluids and salt you take in. It helps the body hold sodium which in turn helps the body retain more fluid.
  4. I went through several neurologist until I found one who took me seriously and wanted to help. He then recommended a cardio. GI and others i asked for recommendations.
  5. About 3 weeks ago I was admitted to the hospital with sever anemia/blood loss, I had a hemoglobin of 5.1. I lost 2/3rds of my blood so they had to be careful not to dilute my blood further with iv fluids. It certainly made my pots/dysautonomia symptoms much worse and by the time we went to the ER I was having great difficulty with recall and stringing sentences together. They transfused 3 units of blood which brought my hemoglobin up to 9 but then started dropping again so they gave me another unit 10 days later before I left the hospital (was down to 7.3). A week out from the hospital I was up to 10.4 and feeling a lot better, was at 10.4 on admission to hospital Monday but then dropped to 8.6 the next day amd was at 8 when I left the hospital yesterday. With having a PE, IVIG, and sepsis during this time it's hard to absolutely distinguish between symptomology but i do know that it made a big difference in my baseline to have more blood on board. Tachycardia, brain fog, hypotension, syncope weakness all improved.
  6. My service dog can alert me when im going to pass out. Gives me enough time to get into a safe position. My family is going to try and bring her to the hospital tomorrow so I can take a shower. She has prevented so many injuries, especially in the shower, so will not shower without her. Sorry that it came across that way, I do benefit from IVIG but if my recent troubles are linked to IVIG i think im going to have to discontinue.
  7. I stay home alone for 4-10 hours about 4 times a week. I don't drive because I can pass out while sitting without very much warning. For the same reason I spend time alone mostly in bed where we know I'm safer, at least from falling. We live out in the country half hour or more into town so if I need help it takes a while for them to get there. but have some great neighbors who are home almost all the time so able to call on them if I need something while family is gone. My 3 dogs do keep me company and when I feel well enough to get in my wheelchair amd let the dogs out my sisters horse often comes to the door to say hi and see if I have a carrot lol! Even though it does pose some difficulty living in the country, I wouldnt trade because it is so peaceful and less stressful.
  8. Thank you, yes, they ran IgA testing and the risk is for anaphylaxis. Fortunately I don't have the antibodies that would cause the problem so pretty safe. They do give me benadryl before the infusions. Thry do fun it really slow over 2 days, ive been doing my best with trying to get fluids through J tube but also have been able to do a liter of saline on ivig days.
  9. Thank you, I will have to look into that. We've never explored any clotting disorders. Unfortunately they just told me one of the cultures is positive so have sepsis for the 8th time... Really hard to hear because I really don't want to loose my port...
  10. Just wanted to ask if anyone using IVIG as a treatment for immune caused dysautonomia has ever had negative reactions with it? I'm back in the hospital, they think maybe I have sepsis because I have SIRS and with my history. However ID is not convinced and thinking that maybe IVIG is making my body crash and maybe caused the Pulmonary Embolism 3 weeks ago. Thinking maybe Mast Cell might be playing into it but not officially diagnosed. Anyone who could share their experience with IVIG would be greatly appreciated! Thanks so much!
  11. I think you are right on point as that is EXACTLY what my pulmonologist told me a couple years ago. He was trying to determine if I really needed oxygen since it was only dipping and coming back up. After he pointed out the profusion problems with low BP and we watched BP and O2 in correlation to each other it was very obvious that BP was the culprit.
  12. Breathing, something we take for granted until it's difficult... I can relate to a lot of what you are saying and it happens to me when i get pre-syncope. When I do pass out sometimes I regain consciousness and feel like I'm suffocating, then follows some coughing, panting, and lots of yawning. Some actions, like yawning force you to breathe deeper and so can be beneficial in some situations. I have a blood clot in my lung right now and require supplementary O2 to keep my sats up. Even though it's small its caused fluid accumulation, collapse of the lower parts of my lungs, and straining my heart which is now enlarged. With all that I've just experienced I have a new found admiration for people with difficulty breathing. Feeling like you can't catch your breath AT ALL is the worst. With the O2 i have right now seem to be seeing that it help with my shortness of breath that happens when my bp or hr go crazy. Hypothesis we came up with (my nurse and I) is that it helps because the blood that is circulating is fully oxygenated and so profusion is better. I hope you are able to find some answers and get some help soon! Just as a side note, have you looked at any medication you are on? I've been on meds that suppress the respitory drive and quite litteraly "forget" to breathe, bringing my respiratory rate really low.
  13. I'm on 0.1 mg 2 x a day currently, have taken 0.2 3 x day before, thankfully I don't need that much any more. It is a bear to get off of if you've been on it for any length of time. For me i find that although it's a small dose my body still reacts to it as a steroid. Send my system haywire for a while, have not found a way around that... I do use midodrine, zofran, Tylenol to help relieve some of the symptoms when transitioning if it's possible. Maybe ask about using a small dose of something else that's fast acting to counter the blood pressure drop? I use midodrine, nice for me because it's half life is around 3 hours so if it over corrects I'm only hypertensive for a short period. I also use clonidine in the same manner for the odd occasion my blood pressure is running high. Something that has helped me with morning issues is getting as hydrated and salted as possible before even getting out of bed. Easy for me to do now as I'm on tube feeds but prior to that I brought bottles of water AND Gatorade to bed and drank at least 16 oz before getting out of bed. This didn't solve all my problems but happy to have had even just a little help from something non pharmacological. Right now my team and I are working on getting me off of morphine. I find slow and steady is better for me as it doesn't throw my body into a downward spiral. Still have mild withdrawal symptoms that trigger autonomic issues but much less severe. We have only been going down by 1/4 of a dose every 4 weeks but I'm down to 1/6th of what I was on 6 months ago. When I change a dose I start with every other day or every 2 days to start and do that for about a week and then every day for at least 2 weeks before making another adjustment. Sorry for the rambling, this got really long...
  14. Thanks so much for the well wishes and prayers! Things are starting to look up, switching to an oral blood thinner today which I can go home on and the dr has ordered another transfusion. The hope is that it will bring me up enough that if something happens I could make it to the ER. I'll still be low but not on the verge of critical and so the hope is to let my hematology dr handle it from there. As long as all is well post transfusion they hope to send me home today. Im so ready lol! 10 days in one room, going a little stir crazy lol!
  15. Update for those who are curious: Blood loss still being primarily blamed on my stomach although it seems I may be loosing slowly still as hemoglobin counts have been trending down and down to 7.3 today. Also found out today after a CTA that I have a pulmonary embolism which is the culprit of my fevers and breathing difficulties. Looks like I'll be here a bit longer...
  16. TCP unfortunately not feeling great, just got through another fever... Dr's are stumped, doesn't fit into a box but at least they're still looking. Possible reoccurring of my osteomylitis exacerbated by the IVIG I had last week. I'm also on gabropentin, not sure that is compromising anything at this point. Thank you mom to Giuliani!
  17. Thank you dizzy girls! Pistol, my stomach is very erosive and has lesions but they don't think that can account for that type of blood loss. Temp has gone up again and still don't know for sure what he's treating... Hoping he can figure it out..
  18. I think that is what the er doctor told me, anybody would have symptoms at that point. I'm sorry you have such trouble with your periods, have similar issues there. I get iron infusions because I can't absorb an exhaustive list of oral iron. Fluids definitely help me though, we've been doing 3 liters a week for a couple months now which has really helped. Really hoping my port is not infected, don't want to loose it. Been treating me with 3 iv antibiotics for some kind of infection since late morning as I meet the criteria for SIRS/SEPSIS... Cause when could ever be just one problem? We were hoping I'D go home tommorow but that ain't happening lol!
  19. Just curious if anybody deals with blood loss and how it affects your dysautonomia? I was admitted yesterday with a hemoglobin of 5.1, lost 2/3rds of my blood. Likely been bleeding for a while but dismissed symptoms as just dysautonomia getting worse. Last two days I've been extremely tachy which has also affected my breathing. Anyone experience anything like this?
  20. I am having IVIG next week, 3rd time having a mega dose. Insurance doesn't agree with it's usefulness as a treatment though so not sure if we will be able to continue treatment. I see a massive benefit from it for about 3 months. I do get aseptic meningitis from IVIG but it wears off and then I get to reap the benefits for 3 months.
  21. Thanks Dancer, totally agree! Dogs can be so helpful and leave a hole in your heart when they're gone. Cara, I don't know of anything they have identified scientifically, when I did my research the most prevalent theories were either by scent detection due to hormonal changes in the body or by listening to the heartbeat. Whichever it is its incredible! We have 3 dogs but my great dane is the only one that will alert. We fostered what started as a concerned, focused, attention, unusual for her as a 6 month old puppy, that we observed when I was experiencing pre-syncope. We originally adopted her as a pet but greater things were in store. She is very smart and very very good at problem solving. I think that is also probably key. I have given her doggy puzzles before but stopped buying tbem as she figures them out in minutes and even when we took it away after 6 months she automatically knew how to manipulate it. We have goats and horses and she heards them, we can ask her to cut one from the heard and she knows exactly who we are talking about. She has had 0 training for this and it's pretty amazing to watch. Our boy goat actually enjoys playing with her, except when she confuses his horns for dog toys lol! Otherwise she is very gentle and mothering to nannies and kids alike. She certainly is a gift and a pleasure to own her!
  22. Thanks Pistol! She is pretty amazing and frequently mistaken for a Dalmatian, never a cow though lol!
  23. We are continuing to work with/owner train my Great Dane. She started the alerting behavior on her own we just encourage it and working on manners ect. We may not push to the point of having her as a full time SD but when I need her most is at home in the shower anyway. No more concussions in the shower for me! Once I get to the point of being able to stand and walk a little without passing out we may double down on the other aspects of training so I can be more independent. I think it's crucial to take into account all aspects of a SD handler relationship before making a decision as there is so many variables. It would be impossible for me to have my dog, or work with her, without the amazing help I get from my family. It can be a lot of work and a big undertaking not just for the handler. I hope you are able to find what works for you! (Here's a pic of my girl, I'm just proud of her lol!)
  24. I use one, not directly for my dysautonomia but do find it helpful sometimes managing symptoms. Primary reason is for my sleep apnea becuase of my abnormal ear/oral/sinus structure (due to cleft palette) when I wear a cpap I have a problem with getting ear infections. So my Drs figure something is better than nothing with the O2. A Pulmonologist told me in my case that my low blood pressure prevents adequate profusion to my fingers to accurately give an O2 sat level so the "lows" I was seeing were incorrect, the problems lied elsewhere. I do however drop my O2 throughout the night even while laying down with fairly normal BP. At any rate I do find the O2 to be especially helpful with managing brain fog, migraines, and dizziness and also mildly helpful in overall symptom management. I hope that is some small help, let me know if there's any other questions I could answer.
  25. My BP is all over the map right now, we've dealt with it by using midodrine (10-20 mg 5 x a day) florinef (0.1 mg 2 x a day) and clonidine as needed for dangerously high spikes. The midodrine has served me well as its short acting and if I end up higher than I should be it's only for a couple hours. Florinef is more long acting so we don't mess with the dosing, it does help (most of the time) maintain a higher baseline bp. That's been my experience, I do get headaches from the midodrine and some other side effects but for me the benefits outweigh them. It really boils down to wether your body can tolerate the meds and how useful they are for you as a part of your treatment plan. I have a feeding tube so had roughly the same intake day to day for a while. Despite this, I still had a wide range in BP. Right now I'm struggling to get adequate hydration and nutrition which is of course lowering my baseline BP.
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