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jackiemxoxo

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Everything posted by jackiemxoxo

  1. I developed pots about 6 months after my third gardasil shot. I sometimes question if it had anything to do with my symptoms developing.
  2. Hey chaos, what does IOM, ME, and SEID stand for? I guess I need to do more research, was doing well for awhile and then bam was hit with another relapse. Thanks!
  3. Within the last few months, I have noticed that I am getting pain in both legs that are similar to body aches when you have the flu. I don't know what is causing this symptom and I am still having some GI issues. Does anyone else get these? Do you know if it is dysautonomia related?
  4. Have you been worked up for mastocytosis? It could be issues with mast cells. If you had a gi biopsy then they could also stain those slides to check for mast cells. The GI docs should have also checked for Eosinophilic Esophagitis. I was having similar issues after having an allergic reaction a couple of months ago. Mastocytosis can be hard to catch though and taking a tryptase level is best during a reaction. I found that doing an elimination diet helped. Especially cutting out wheat and gluten as well as taking a PPI twice a day. Also, I bought everything organic and tried to stay away from anything processed. If you look up leaky gut syndome, it can explain a lot. Some doctors will say it exists and others will say it doesn't but I think it definitely makes dysautonomia worse. I hope you start feeling better soon! Also, feeling dizzy after meals is a dysautonomia thing because the blood is rushing to your gut. Its postprandial hypotension.
  5. I worry about the long term effects of my heart working so hard. I think most people with dysautonomia do though. Like you said though, I think the best thing you can do is take care of your health and hopefully more treatments will be made in the future.
  6. If you are hyper pots then your blood pressure may not drop and you may not need to increase salt intake. I think increasing salt intake is mostly for people whose blood pressure drops. I could be wrong. My diastolic blood pressure is often a little elevated and my doctor was not concerned and said that if I took medication to lower it then it would make me feel worse. He said I could be on a betablocker if needed but I don't seem to tolerate them well. I would ask your doc what he/she thinks. Also... Even though mine is high sometimes it varies quite a lot so it is not constantly high. If yours does this too then it is not as much as a concern rather than part of the dysautonomia.
  7. I thought this video was really interesting even though it is not directly related to dysautonomia. He does talk a lot about the sympathetic/parasympathetic pathways as well as autoimmune connections and other stuff. I really wish more doctors were informed about the gut/brain pathways. The link to the video is below. https://www.youtube.com/watch?v=Am7kr-vP0Ys&app=desktop
  8. A lot of people with mcas do the zyrtec and zantac combination. You could bring that up to the doctors? I just read your post about mthfr defect which I think is helpful, I have that too. I got my tryptase levels checked but they are normal but the doctor said next time I have a reaction that I need to get them checked then. Also, my IGE is elevated. I think a lot of my symptoms are due to an allergy but am having trouble finding what. Also, I am having a lot of GI symptoms which is the most debilitating right now. Some things which I feel are helping me.. - taking D3 vitamin drops (instead of pills) I would recommend this to anyone who has a vitamin d deficiency. I switched from prescription pills to drops and my level is finally starting to rise. I think our guts does not absorb d well. - stomach acid reducers.. right now I am on protonix and zantac but I am still having trouble here. - after meals taking choice organic easy digest tea- it contains Organic Ginger Root, Organic Licorice Root, Organic Lemongrass Leaf, Organic Turmeric Root. I think this has made a difference and some of those are histamine reducers. - taking a methyfolate supplement, I am only taking one with 2.5 mg. You have to be careful not to take too much because that can cause symptoms too. Again, these are just what I am doing and thought I would throw it out there for anyone who might find it helpful. I would consult your doctor and ask them about trying these things.
  9. yes, it has been awhile since I have been on it but my symptoms were very similar to yours. I think paxil helped a lot initially with my heart rate, stomach pain, and keeping me calm. It did cause me too much sympathetic activity with dilated eyes though and eventually my endocrinologist wanted me off of it. Another time I switched to lexapro which seemed to have similar effects but were not as strong. At the time I was also on small doses of florinef to help too cause my blood pressure was still dropping. I think ssri's can be really beneficial for "restarting" the autonomic system.
  10. I never have had full syncope but pre-syncope (like Kadybug) when I first became sick. I could feel the pooling and dizziness even when just sitting. I treated it the same way as full syncope with meds and fluids. At the time I had iv's, paxil, florinef, and some gi meds. Eventually I knew I was getting better because sitting got easier then standing. This is just my experience though and everyones can be so different. Also, I agree that positional changes can affect it as well.
  11. If you think you may have it, you can go to a doctor check your tryptase levels checked which is just a blood test. However, a real indication would be tryptase during a reaction. I went to a hematologist to get it checked out. There are also some other tests they can do. If you have had gi biopsies, like during an endoscopy, they can stain them to check for mast cell infiltration.
  12. I am currently on an elimination diet that is pretty much paleo but I still eat brown rice products. I have cut out gluten, soy, dairy, corn, eggs, oat, nuts, and shellfish. Also, I have switched to everything organic and grassfed beef. I am still having some digestive/reflux problems but my hematologist said it can take 8 to 10 weeks to heal. I think paleo can be helpful or just cutting out a lot of white carbs in general. I think if you look up leaky gut and the factors behind it that there is a lot of truth there. Changing your diet to heal your gut can be more helpful than anything whatever diet that may be. Also, I think leaky gut is another reason a lot of us don't absorb certain nutrients like vitamin d. Pinterest has been extremely helpful with recipes.
  13. Like someone else mentioned, everyone's experience is different. To me, vaginal birth was preferred because c-section is major surgery and I didn't think I would be able to handle anesthesia well but be prepared for anything. While I was pushing, my heart rate would jump all over the place but luckily my OB understood and let me guide what I could handle. I got an epidural which my pots doctor said was fine but I had it titrated because I am hypersensitive to medication. It made my blood pressure drop and they had to give me ephedrine and that made my blood pressure shoot up right away. I am more hyperpots though and my blood pressure was raising during the last month of pregnancy so I was induced. I felt really potsy after birth for about 2-3 weeks but after that things improved. I think pregnancy was miserable during first trimester but was really good during second. I felt better than then when not pregnant. This is just my experience, I hope your pregnancy and delivery go smoothly!
  14. Even though my blood tests show positive, my stool didn't so my gi doctor did not feel that I have an active h.pylori infection. He thinks my issues have to do more with allergies so i'm being worked up for that.
  15. I hope you find relief whatever you decide. I know that my first trimester of pregnancy with my daughter was pretty crazy with pots symptoms but the second and third were much better. I think most ppl find this to be true with pregnancy regardless. Also, not all people are bed ridden after birth so don't let that psyche you out. I would talk to your family, doctors, and others who you are close to for support and then try and figure out a plan. I think the fact that you are the only means of income can be adding stress to the situation. Also, you may want to play around with a low histamine diet if you think cytokines are contributing to inflammation. Maybe not a strict one since you are pregnant but reducing inflammatory foods might help.
  16. Have you been seen by a rheumatologist? The joint pain could be from inflammation/possible autoimmune so if you haven't before it might be worth getting checked out. I am currently being worked up for mast cell by a hematologist and I get a lot of the leg pain you are describing which I think it was interesting that he asked if I had that symptom too so I am thinking it might be related. I also used to get a lot of numbness in my feet/legs which I think is related to pots but I never found out. I see an neuroendocrinologist who does a sudoscan which can scan for small fiber neuropathy which I think I have in my feet. He explained it to me before that I needed a bone density scan at our next appt but I was having a little trouble following him about the neuropathy in my feet but it can cause pain/numbness.
  17. I think pregnancy and pots can really vary depending on the individual. I would recommend that you try when you are going through a good period (which seems like you are) and to start taking prenatals early. Doctors will recommend that you start taking them at least 3 months in advance anyway but you could start even early to learn which ones you tolerate best. I recently suffered a miscarriage (which i think might be linked to the fact i have the mthfr gene) but I also have a very healthy 2 year old. I have had POTS for 5 years but it was in remission at the time i decided to get pregnant. Like you, I was super nervous but everything went pretty well. I will premise this with everyone's experience is different, but honestly I never felt better than when I was pregnant in my second trimester. The extra blood was awesome, my gi symptoms improved, and so did my moods/anxiety. The first semester was pretty nerve wracking because I went through weird fevers and pots symptoms around 6 weeks but I read more about this (i forget where) and it explained that an autonomic storm can occur during this time. After the first trimester I began to feel better. My blood pressure got high around my third trimester (i'm hyperpots) and I ended up being induced 2 days before my due date. I got an epidural and talked to the anesthesiologist about this before time because I am super sensitive to medication. He titrated the dose very slowly but my blood pressure tanked and I almost passed out. The nurse gave me epinephrine which worked within seconds but I felt awful with high blood pressures for about 2 weeks after delivery. I breast fed my daughter for 15 mths which I think helped improve my pots symptoms too. Like I said everyone's experience is different, I worked closely with my ob and maternal fetal medicine because of possible sjogren positives and to make sure my daughters heart was ok. Good luck and keep us updated, hoping for the best for you!
  18. That is a really good article. I definitely get the red patches on my face, neck, and chest.
  19. Hello, I can so relate to your post. I feel like every time I think I am getting better, bam, I am hit with something that pushes me back. I feel with chronic illness that it is a lot easier to focus on the negatives than the positives. I have to force myself to appreciate the little things in life right now because I know it is better for my mind and body. This is a lot easier said than done though. I agree with Chaos that researching more about the illness can help. Alternative medicines and therapies may be useful. I am in the counseling field (had to take time off due to sickness) and I have heard positive stories about biofeedback as well as other alternative therapies. I hope to eventually go this route when I am not feeling so sick. Also, tell your therapist what is bothering you most because that is what you need to talk about. Honestly, I think the most important thing is to not lose hope. I have to believe that things will get better and not always be this way. Even if they don't, I still have to believe it because that is the only thing this illness can't take away from me. I also have to hope that more research will be done and new treatments will be discovered. Vent as much as you need to because I think this forum is full of people who truly understand what you're going through when other people do not.
  20. Hi everyone, thanks for the well wishes. So far I am doing a food elimination diet but I still feel like crap so I don't know if it is really working. I got blood tested for food/indoor/outdoor allergies and everything came back negative which from what I read on the internet does not mean much. My IGE levels are still high elevated so my body is having an allergic response to something. I am just trying to take it easy for now and research ee and mast cell.
  21. Thanks everyone, I just found out I'm pregnant so I am really limited with testing. I am hoping to be able to get my symptoms under control with an elimination diet.
  22. Florastor is just a different one that a gi doc recommended to me once. I think everyone tolerates probiotics differently though so its not a one size fits all approach. A lot of people will try kefir or other things too. One may be good for you while another may cause discomfort. You could always switch up your diet too and see if that helps. I really think a good GI doctor could help you though.
  23. Your GI could do a gastric emptying studying to see if you have gastroparesis. I agree with others about probiotics and they do vary. The one that I found useful was florastor, culturelle did nothing. Also, if your GI thinks its ridiculous that it would not be related to dysautonomia then you might want a second opinion. Regardless, your GI should still work you up for symptoms and try other testing.
  24. Hi katie, the articles you listed were helpful. My GI thinks it is allergic esophagitis and my endo thinks it might also be mast cell. I just did a blood allergy test today so we will see. I know for sure that I react to chicken and that is probably what set off my initial symptoms. I am down to eating a handful of foods and hopefully healing my GI tract to see what I can tolerate.
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