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Everything posted by mully2014

  1. I will even have breathing issues while I am passed out and come to. I have O2 readings that are low or not in the normal range during some of these times and even occasionally when doing orthostatic checks at my doctors appointments. More often now do I have problems getting enough O2 and my eyes will even get extremly bloodshot looking when O2 levels are not good.
  2. I just got a puppy and have been training it to be a service dog. He is 14 weeks old and I can take him anywhere I want already!!! Make sure that you get to keep the dog and you are the one to train it not other people so the dog makes the bond to you. If you have any questions message me!
  3. I am part of a planning committee for a run/walk at my school for another disability. Let me know if you want any info or help based off what we are doing. Along with the run/walk we also have a pancake breakfast thing, silent auction, etc. I wasn't at the school when they did it the first time but it was a huge success then and is expected to be a big hit again.
  4. Wow that is an insanely short TTT. I've had two and they were about 30mins and 45mins each!
  5. With any drug you can get new side effects with an increase in dosage. I have this happen to me a lot and sometimes when I go down from the increased dose I will still have the problems I got at the increase.
  6. My sister is on Florinef .1mg she is 13 and is MANAGED very well on it!!!!! She doesn't have any side effects on it either. I am also on florinef and have been for a couple of years. I am extremely sensitive to meds but I didn't have any side effects from florinef. I am currently on .3mg but have been on .4mg before. When I started out I was on .1mg. I hope this really helps you!!!
  7. Wow thanks everyone!!! Sounds like I got lots to try
  8. I get really bad muscle tension that seems to be related to my conditions. Does anyone else have this problem if so what do you do to help? I have done massage and chiropractor but it adds up especially when it doesn't hold/help for very long (on average only 24hours) and just started up with manipulation and physical therapy. I'm hoping to feel better especially when I will have to sit all day long at school in a wheelchair.
  9. Lauren's Hope is where I ordered mine from it holds up really well and you can have different bands that hold the alert part. All my friends and family comment on it and love it. I like that it looks like jewelry and can get a starting point for anyone that would be around me when I pass out. I put my name, conditions (NCS: syncope : fainting, P.O.T.S.) then allergies, and a contact number for a family member. I had fainting put on the alert so anyone would be able to understand that it was I medical condition and it was a normal thing for me. I didn't include meds because they are constantly changing. For me the medical alert bracelet became even more important after I had mutiple concussions and ended up losing my memory.
  10. FLorinef is a great med to start out with if you are worried about side effects. My sister is on florinef and she is managed very well! I hope you can start feeling better soon I would give meds a shot though if your doctors are recommending it. You never know what might help you or get you managed its different for each of us.
  11. I have an IEP and 504 plan but they still seem to mess things up! I got another meeting for my IEP tomorrow so I hope it goes well.
  12. Thanks for the thoughts Alyssa I will keep that all in mind!
  13. Makes me smile to think of getting better!
  14. Soooo happy to hear this it gives me even more hope!!!
  15. Oh I hope that your family can be supportive of whatever you decide. A wheelchair can be nice for events every once in a while and can help with symptoms.
  16. I went to Mayo in MN and I had a good experience there and my regular cardiologist still keeps in contact with my doctor there. They didn't have much for me personally to help me but they did reassure us in a lot of our thoughts and treatments. The cardiologist I normally see always goes above and beyond and Mayo said they couldn't believe everything we had already done.
  17. About the running thing I have exercise induced hypotension. We have never been able to manage my other conditions so we haven't ever really focused of the exercise induced hypotension so I don't have much advice on how to help with it, sorry.
  18. I have lots of relatives that have symptoms of dysautonomia but I definetly have the worst problems with it. On both of my parents sides there is issues with low blood pressure, one person has laughing asthma that cause them to faint, others have orthostaic intolerance, my younger sister has some similiar symptoms and is diagnosed with POTS. My family medical history is a long confusing web of connections to dysautonomia that seems to increase all the time.
  19. I take three florinef tabs and I was in the low normal range even with a high sodium diet I would've thought it would've been higher than the results.
  20. SItting, laying, standing, exercising I can pass out at any time!
  21. Congrats that is so great!!!!! And I hope that everything goes well!
  22. I haven't taken the temps before but I get really cold and hot randomly and it can be kind of a pain cause I never know what to expect.
  23. I know of a lot of organizations I filled out all of the work and sent it into capable canines but haven't heard back yet. There is also custom canines and the canine partners for life. A problem I found is that some of them want you to travel to their training site for a long period of time and stick to a specific training schedule but with my body I don't think I could make the traveling and be able to go train on a schedule like they say. I normally don't have a schedule that I must follow becasue things do come up so instead I consider it "goals to get done".
  24. Thanks Wendy C. I will look into it!
  25. I am trying to get a hold of a service dog organization and am wondering what groups people on here have been able to get in contact with them about the dogs and if they are a good canidate for a service dog. I would really like to get one but every group we contact they don't contact us back which is disappointing since I know it would help out with every day.
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