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Everything posted by castronovo112587

  1. I am so happy to share this with you guys. If anyone has any questions I am here. Thanks for the kind words!
  2. Hello all. It has been a while since I have been on here and I wanted to make sure I come back here and share my progress and what I did to help give me my life back. I joined this forum about a year and a half ago after about 6 months of very severe daily symptoms I was having after giving birth to my 2nd child. I already had a pretty extensive health history as I had carcinoid cancer previously in the past but had been cancer free for 5 years. Pretty much after giving birth to my daughter in June 2013 I started to have a wide array of scary and debilitating symptoms within a couple of days after the birth. I was in and out of the hospital, I was having chest pains, trouble breathing, a severe headache for weeks that just would not go away, crazy blood pressure fluctuations, I was constantly dizzy and foggy headed, flushing episodes, I couldn't get up and do much of anything around the house because I would feel so dizzy and out of breath and I was getting palpitations constantly and my whole body was in pain and I felt like I had the flu everyday but I wasn't sick. They had put me on Beta Blockers due to extremely high blood pressure and high heart rate (but then my blood pressure would bottom out and get too low) the Beta blockers made me not able to breath and my symptoms even worse. I started doing a wide variety of testing to see if they could figure out what was going on. Everything was turning out okay, so eventually the discussion moved to my carcinoid being back because carcinoid syndrome just so happens to have the same symptoms as pots. My cancer doctor seemed sure I had some residual carcinoid somewhere due to my intense daily symptoms. I went to see a Carcinoid specialist a couple of hours away at a big cancer institute and was certain he was going to say that my cancer was back. I went over all my symptoms with him and had done previous blood work and urine to test for carcinoid syndrome and to my complete surprise he said he was pretty confident my cancer was not back because my numbers were fine and I wouldn't have such intense symptoms without it picking up in my urine and bloodwork, although he would do further testing just to make sure. He then said he believed I had an autonomic dysfunction called pots based on all that I was telling him and that I needed to get a tilt table test. So I did an octreoscan and ct scan and repeat blood work and urine and sure enough there wasn't any carcinoid back. My next step was to get a tilt table test which was performed and sure enough it was positive for pots. Meanwhile I had also gotten tested for food allergies and wheat, soy, eggs, milk and peanut popped up as well as environmental allergies. I was absolutely miserable and pretty much homebound and going through the toughest time of my life. My body was overly sensitive to everything and any medicine I would take would make me feel a million times worse. My diagnosis was a follows: Pots and fibromyalgia. My thyroid numbers were off as well pointing towards hyperactive thyroid but I no longer have insurance and haven't gotten a chance to have it fully checked out. After months of being in and out the hospital and feeling miserable all day everyday I found this forum and it gave me hope and it was a relief to talk to people going through the same thing I was with the same symptoms. I want to share with you guys what I did that worked for me and helped me feel wayyyy better. Once I received the paperwork on the allergies I decided to change my diet(I had an absolutely terrible diet including fast and processed food) I cut out wheat, dairy, soy, eggs and peanut(due to the nut allergy) I also stopped eating anything with preservatives, GMOs and msg in it. I adopted a completely healthy diet made from real ingredients without any of the bad stuff in it. It took some time to see a change about 2-3 months but I slowly started feeling better. My brain fog was disappearing, my pains all over my body were becoming less, my headaches becoming less, palpitations becoming less frequent and I felt like I was starting to get my life back. I also was making sure to eat more potassium and increased my salt intake. As I started to feel better I was able to start to be more active. Beforehand I was pretty much housebound and struggled to maintain even the smallest chores around the house. As my symptoms started improving I was able to get out and go to the grocery store and start moving around more and becoming more active which in turn started to help condition my heart back to a more normal state. I started to work again part time and if I was feeling out of it and having symptoms I was able to sit down in the office and rest or leave early. I just kept slowly improving more and more. Now today after a year and a half of changing my diet I would say I am 85-90% back to my old self again. I now am very active on my feet for hours at a time. I can go out with my family and have fun at the park. I can go out with my friends dancing at night and even have a couple of gluten free beers and feel ok. I of course still cannot go out running a marathon or do hardcore workouts. But I can do some treadmill at a nice steady walking pace for 15min and some biking at the gym for a few minutes as well(this is only recent within the last 4 months) prior I did no excerise and just stayed active by walking around and doing errands and just being on my feet at work. My heart rate used to be about 120-130 prior to now with me just sitting there not doing any activity. Now being up and around on my feet it will be 85-90. My brain fog is completely gone, pains only from time to time and way more minor, headaches only come now during that time of the month due to hormonal changes, palpitations are only every once in a while and very shortlived and I do not get short of breath anymore. I wanted to share this with everyone because I remember how down I was a year and a half ago and how I felt stuck and like I was going to feel this way every day for good and never feel better and have my life back. I am not a doctor or medical professional but this worked for me and wanted to share with all of you. If you are interested in doing a fully clean diet(no GMOs, msg or chemicals) and cutting out the wheat/gluten, dairy and soy(which are,known to cause symptoms in people who have sensitive bodies) I just want to say that you have to be very strict and completely stick to it and give it time to work. I still keep up with the diet today and I eat a wide variety of foods that are very tasty and make 90% of my meals at home and if I go out to eat it is only at a restaurant that can make me a special meal for my dietary needs. I also cut out the red meat and pork and just stick to chicken and turkey(without antibiotics and steroids) this wasn't a big deal to me as I never cared for red meat beforehand. Obviously you should not cut anything out of your diet before talking to your doctor first. All of my vitamin and mineral numbers are fine and my iron numbers are actually better then they used to be. I want you all to know that I enjoy my diet and it is not something that I have to struggle to do. As I said I eat a wide variety of foods and eat good everyday. I am so glad to have my life back and wanted to make sure that I came on here to share my update with you and share what worked for me. The reason why I think changing my diet worked is that when you have pots your body is oversensative to everything: smells, medicines, when you get sick. So it makes sense that your body would also be oversensitive to food and react if you are eating genetically modified foods, msg and other chemicals in most grocery store food. If I would break free from time to time a few months back and eat msg or GMOs my body would react and I would get the headaches and dizziness other symptoms. Basically, by me changing my diet my symptoms started to improve which then led to me being able to be more active which then helped with my heart rate and helped condition my body back to a more normal state. Sorry for the long post guys. Just wanted to share this with you.
  3. Hello. I have not been on here in a while but I would just like to say that changing my diet into a completely clean and healthy diet has eliminated my brain fog to the point where I will just get it slight now only every once in a blue moon. I had terrible brain fog every day for months and months and I cut gluten, dairy and soy completely out of my diet and and I feel sooooo much better. It may take about 2 months or so to start to see results but it is well worth it. I have not eaten any of these ingredients for a year and a half and also do not eat any GMOs, preservatives or msg and I have been feeling so much better. I would say to at least try cutting gluten out for 3 months and see how you feel. You have to cut it out all the way and stick to it. I wish you the best of luck. ?
  4. Hey I just wanted to say that when I first developed pots pain was constant all day everyday. I changed my diet completely one year ago and cut out the 6 most common food allergens and all fast, processed and GMO food and the brain fog is gone and my pain has improved 85-90 percent and most days I do not have pain at all. It is worth a try it would take about 3 months before you start noticing a great change.
  5. Thanks for the replies guys. I do not take midodrine or any other medicines( I just keep very well hydrated and eat more salt) it hasn't happened again since then but I have had other nerve issues like rand numbness and tingling so I'm sure it is just part of that.
  6. Hello all. Has anyone experienced weird nerve problems. There is a new symptom that I have and I do not know what way to describe it but to say that my teeth and toes and other nerve areas are feeling very uncomfortable tonight. Pretty much that feeling you get when there's a scratch on the chalkboard is what I am experiencing on random areas of my body. Has anyone experienced this? If so what is going on and what helps?
  7. I developed pots post my 2nd pregnancy and it is over a year later and I still to this day wonder if if was really from the child birth or if its from the Tdap (or tap one of the two) vaccine the have me in the hospital the day after my daughter was born. I felt fine after birth and received the shot the next evening and went home and everything started the day after that. I guess I'll never know the true cause but I'll tell you one thing I will never get a vaccination again.
  8. I acquired due to pregnancy and child birth. I have heard that during pregnancy many women will feel ok due to the higher blood volume but I imagine after the trauma of childbirth you would experience a big flare up. Best wishes
  9. I changed my diet drastically 8 months ago. I no longer eat any processed, GMO or food with msg and cut out wheat, eggs, dairy, soy and peanut. Some due to allergy and some because I know my body cannot tolerate it. This is what has helped me most of all. I'm not back to my old self but I would say I feel 75% better than he before this diet. I also drink apple cider vinegar each day and eat a raw clove of garlic which has helped my fibro symptoms a lot.
  10. Beta blocker made my breathing problems wayyyyy worse. It needs to be a selective beta blocker. That is way better for people with breathing problems then non selective. I however cannot tolerste any meds at all including any type of beta blocker. In addition the bets blocker gave me insomnia which is a known side effect. I did not sleep for 48 hrs one time while on it and had a hard time sleeping every night.
  11. Hours* sorry about the messed up words typing fast on my phone.
  12. I have the same exact problem and comes in spells like yours as well and will include the sensation/pain in my chest as well. I have never been tested for sleep apnea, I will get tested one day but I feel it is either just part of the autonomic dysfunction or some sort of weird adrenaline rushes that are happening inappropriately at the wrong time. O have also had theories that it is some type of anaphylactic thing from possible mast cell issues. Mine can go weeks without happening and when it does happen or can last only a few min or hpirs that night and then be that way for the next few nights. Next time try taking a benedryl and see of it helps. It has helped me before.
  13. Does anyone's toes and fingers ever feel like there's glass stuck in them?
  14. All is ok gjensen . My numbness and tingling was explained to be from my fibro. Have you ever looked into fibro since you have headaches and other pain. Also o mist say that after eating a clean diet my headaches and numbness and brain fog have decreased by 80%. Somthing to look into. Hope you are feeling better today.
  15. I changed my diet completely back and in September. Not wheat, dairy, soy, eggs, or peanut. It took 3-4 to really notice a drastic difference. I also do not eat anything processed or GMOs and I felt 75-80 percent back to myself. It is unbelievable how much better I feel and if I happen to cheat every once in a blue moon and eat processed or GMO food at a restaurant my headaches and some other problems will come back for a few days. Just hang in there you may feel worse at first before you feel better as your body is riding you of all of the gluten and wheat, it has to re adjust. My major diet change along with drinking apple cider vinegar and eating a raw clove of garlic every day has me back to almost normal onost days. I have a day here and there if I don't get much sleep where I feel a little icky.
  16. I had an active ebstein barr(mono infection) in highschool. Since then my numbers have been through the roof but not the ones indicating an active infection. I believe many people with CFS have these high numbers.
  17. I get it too. You can get it from fobromyalgia and also if you are deficient in somthing such as b12, calcium or potassium.
  18. It sounds about right to me. I am always carrying water and a salty snack with me as well as benedryl!
  19. Benedryl works for me without any potsy symptoms. It is good for allergic reactions in the moment bit usually not for an everyday preventative. I've heard claritin is good for that.
  20. After having my daughter when i first developed pots my bp went up to 181/132 not sure how I did not stroke out or have a seizure. For a good 2 months after my bp would go anywhere from 160/110 to 90/50 it was so scary my bp was ALWAYS 115/75 or 120/80 before this I'm glad you got checked out. Have you started any new meds or anything lately that could trigger bad bp fluctuations?
  21. I cut out wheat, dairy, eggs, soy, peanut and do not eat any GMO or processed food. It took me a good 3 months to start to see major difference and I feel sooooo much better then before now.
  22. My son was born with chiari 1 malformation and had brain surgery when he was 4 he was diagnosed from a brain/spinal cord MRI it was a special one that can tell you if there is a blockage in the flow of cerebral spinal fluid (many people with chiari have this problem) the MRI was not upright but I am sure an upright one would probably be even better. Definitely make an appt with a neurologist and maybe hold off on the chiropractor till you get this figured out. Do you have trouble swallowing food and do you snore? Many chiari patients do. My son had a swallow test done as well. Best wishes
  23. I'm with you my PCP as an excellent Dr as far as getting you in right a way and doing the proper tests and referring you to someone but doesn't seem to buy into the whole pots/autonomic dysfunction thing. He seems knowledgeable but doesn't seem to put too much concern into it. Hopefully you can get referred to someone who can help you. I need to see my allergist again I guess he would be who I should start with.
  24. I've never had a c section but doesn't the spinal they give you for it drop your bp as well any way? I know general anesthesia will as well as an epidural of course.
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