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Faintinggoat

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About Faintinggoat

  • Birthday 01/03/1990

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    Over the Rainbow

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  1. Hello everyone, I know there have been some comments on other posts about this recently, and also posts in the past but wanted to collect things on one recent post. Who here has tried or is currently on Northera? I saw Dr. Grubb yesterday and he is working on getting me set up on Northera. My understanding is that it has been super effective in the treatment of Orthostatic Hypotension and has much fewer side effects than some of the other options. This makes me particularly hopeful as I've been developing a major sensitivity to medications as of late. Pyridostygmine, for example, landed me in the hospital for a week. Thanks everyone
  2. Thank you all for your responses. Though I am only now writing back, I have been reading each of your comments as they have come in. I know that pretty much everyone on this forum is here because they understand that feeling, and those bad days. I really appreciate everyone of you and each person on this forum. I know that there are still a lot of options for me and that research changes every day, but its like everyone here has said, we all have our good and bad days. I have my therapy today, so I will try to talk to her about how I feel about dealing with this condition, and how I don't feel like we've been addressing it adequately. Thank you all again, Goat
  3. Hello everyone. I've been here a while, but I've been more of a forum lurker than a poster. That being said, I am feeling the need to reach out to some fellow Spoonies. I don't know if this is the pattern that other, but I will try to describe my experience. When I first got sick, I never really experienced any mourning or grief from being sick because so much of my life was about finding out what was wrong with me. I think part of me wanted to hold on to the hope that once they figured out what was wrong with me that I would be okay and that they'd be able to stop it completely. When I was finally diagnosed there were two experiences for me. First the excitement that I finally knew what was wrong with me, and then that was followed by finding a doctor who knew how to treated, and despite understanding the actual reality of living with POTS, I still held onto hope that someone would come along that would fix me completely and I'd be fine. Now, I am being realistic about my diagnosis and it really stinks. I am on several medications that by all means have helped an amazing amount. Specifically I was fainting every single day sometimes multiple times a day, and now I am fainting about once a week or 10 days/ I know that I should be happy about that but I'm not. I hate that I'm still fainting, and even though I hate fainting with an undying passion, the fainting everyday really helped with the other symptoms because it would kinda reset my system. Now that I am fainting less, I have more symptoms (e.g., sleepiness, dizziness, etc.) I am also starting to struggle with coming to terms with having a chronic illness, and facing the prospect that this could be the rest of my life. I am really struggling with this last part. I have a therapist, but I started seeing her for other issues, mainly PTSD and OCD. But now the biggest issues for me are the POTS and Chronic illness, but she isn't really a health psychologist so she hasn't been helping with any of this, sadly. I know that and have read of others having the same experience or feelings so thought that I would just reach out to others for help. Thanks everyone, Goat
  4. The way the explained it to me is that the anemia is associated with the blood pooling and resultant hypovolemia. So it kinda becomes a perfect storm of things to make me faint. My heart rate increases, my blood circulates too quickly to adequately oxygenate myself (hyperkenetic circulation), my blood pools (and I become hypovolemic) making the already deficient amount of oxygenation, even worse,
  5. Thanks for all the responses. Tammy, so happy to hear that you got on the September schedule as well! A lot of my story overlaps with yours. Similarly to you, I have quite the drive to get there. I live in the middle of Pennsylvania and it is about a 6 hour drive. I also have someone else driving me, mostly because fainting and driving is a big no no, and I make a terrible passenger as well lol especially when I'm anxious. My first specialists who knew anything about POTS was at the Cleveland Clinic, and was in fact diagnosed there. I really liked them, but they were going the conservative approach and were very reluctant to do anything more, even after the conservative approaches were clearly not helping. So, I hope that he has answers for both of us! I have been sick for at least 2 years (fainting for that long at least). Have been taking Propranolol, which has decreased the fainting, but alas its still 4-5 times a week. Just restarted florinef because my blood volume/pooling tests showed that I becoming severely hypovolemic and anemic. I was on it once before, but got so sick when we increased the dose. So we are trying it on the lowest dose only. Anyway, best wishes to you! When do you go? I will be there the 22nd.
  6. I just got the call scheduling my appointment with Dr. Grubbs office for September. I'm nervous that they wont be able to help me and my fainting, but overall am quite excited that I finally got an appointment. I know there have been other posts about this before, but thought I'd start another so as not to take over someone elses post. Who all has seen Dr. Grubb and/or Bev? What was your experience like? What kinds of questions should I ask?
  7. I was on Florinef and had to stop because it made me nauseated, and even made it so I couldn't eat and threw up when I did. Additionally, Sodium tablets are incredibly harsh on the stomach, I personally have to take mine on a full stomach or I get super sick. Since its so soon after taking meds, my guess would be it is the sodium, do you take it on an empty stomach? Even if you have been taking it for a while, I didn't start getting sick taking sodium tabs on an empty stomach until a few weeks after I started taking them. Hope this helped Fainting Goat
  8. I went to Cleveland Clinic last year, and that is where I got diagnosed. I saw Dr. Shields as my primary doctor, but also saw Dr. Jager during some of my testing. They are worth seeing if you need diagnosed or if you have been floundering for a while without anything that really helps. I was diagnosed and then was told I needed to wait quite a while doing these life style change things (like increased sodium and fluid) before they would even consider doing anything else. This was frustrating for me at the time, but I do understand it. They also offer some training/therapy in things like counter maneuvers and various other things that are meant to help with symptom management. They are pretty good at keeping your doctor update on what is going on, and provide both you and your doctor with the full chart after. Um, I'm sure there is more information to tell you. If you have anymore questions feel free to ask here, or to send me a PM. Fainting Goat
  9. Soo, I saw a new cardiologist in the area yesterday. If ever there was a doctors appointment to cry over, it was that appointment. First off, I was told my symptoms were slightly abnormal, that the world spinning sensation was abnormal with POTS, and "amnesia" with the syncope is almost never seen in POTS. Maybe I'm just over sensitive to these things, but I thought the syncope amnesia was my brain fog. He told me that he would have been more likely to think that I had seizures than POTS. I was tested up and down for POTS for MANY months, up to and included wearing a ambulatory EEG for 72 hours. It's definitely seizures. I was also told that the reason they put off testing me for POTS for so long is that some of the stuff was a bit more likely in other disorders, but not unheard of in POTS. Finally, all of my Cleveland Tests supported the diagnosis of POTS, blood pooling, positive tilt, etc. So even though most of my doctors have no doubt it is POTS, this one doctor trying to reinvent the wheel and diagnose me with things I definitely do not have just set me over the top. The next thing he said was that in order to try mestinon, after I think I somewhat convinced him that we ruled out everything else and that the tests support POTS, was that he wanted me to see their EP. I may just still be over frustrated at the moment, but right now I am leaning towards cancelling my EP appointment. I can't keep going from doctor to doctor being told I cannot be helped. It's not good for my mental and physical well being. I think I am just going to return to my primary physician and try asking her for IV Saline therapy. Anyway, I needed to just wind down from the appointment, and I do that best by writing things out. Fainting Goat
  10. I have asthma as well. I was diagnosed long before I developed the POTS symptoms, but it has gotten worse since I developed the POTS. We have been significantly more hesitant of what medications (especially beta blockers) that we can use with the asthma. Additionally, some of the medications that are typically used to treat asthma exacerbation (e.g., prednisone) actually trigger my POTS and can make it worse. If you think that you might have asthma it might not hurt to see your primary doctor, or even an allergist or pulmonologist. My allergist and PCP communicate over the treatment of my POTS. I also can't have the normal tests anymore to track my asthma (e.g., spirometry) because it makes my heart freak out and causes syncope/pre-syncope. Because of this my doctors work with me with other tests to try to keep track of my asthma. If you do see a doctor because you think that you might have asthma make sure they know about your POTS, and that some of the normal testing might make it worse. Hope this helps! Fainting Goat
  11. Corina, that's pretty much what I did with my doctor. Both the Florinef and Midodrine were suggested by me, we both did research and decided together to give them a shot. But its nice to have found someone that has had experience with POTS.
  12. Thank you all for your responses! Today I was told basically that my only options are: to accept things the way they are and hope that they get better over time (not likely since I am barely functional), or to accept a referral to a bigger clinic out of state since I was turfed from the clinic that diagnosed me. I was SOO frustrated to say the least. Accept that I am 24 and not functional, heck no. So I started spam calling all the cardiologists that I could find at bigger medical centers in Pennsylvania and I found a Cardiologist in my town that has expertise in treating patients with POTS. So, I figured what the heck to I have to lose, and scheduled a new patient appointment for the 18th.
  13. For those of you that this applies to: What do most people do if both Florinef and Midodrine failed? I was on the Florinef for a while, and started at .1. This dose was fine, and I did notice some positive things, but it really wasn't at all significant of a response. So we increased to .2 then .3 a week later. I started noticing very minute appetite changes on the .2, but when I got to the .3, I was having very bad reactions to it. I could not eat at all and when i would force myself to eat, I would be full very quickly. Shortly thereafter, I was not able to eat at all without getting sick. So we came back down to .1 in a tapper, but I was still having a lot of issues with eating so we came off of it all together. After that we tried the midodrine. I noticed no positive effects from the midodrine, and had just about every possible side effect that you could get, including extreme pain from it. So we came off of that immediately. Now we are at a place where we aren't really sure what to try next and are waiting to hear from my cardiologist. I only see my primary anymore (unless something is seriously wrong), which I prefer because the bouncing from doctor to doctor is very hard on me. I was just wondering if anyone else had major issues with those meds and what they tried next? I am already on a great beta blocker that I have had a lot of success from, but there is still room for major improvements in my life and functionality. Thanks! Fainting Goat
  14. ah yes good points IceLizard! its important to put syncope on there if you faint. Mine says Syncope caused by POTS
  15. I have a bracelet because I am also a fainter and and worry about fainting in public. I ordered mine from creative medical id but there are tons of sites on the web that you can order from. Previous I have ordered from Lauren's Hope. I liked both of them, and had no issues. Both had good quality jewelry. The former is hand made at purchase so it does take a while for them to get to you. just do a bit of searching on the internet and you will find several sites. I would be very cautious if you do get one about what it is made of. I had a thin rope bracelet one before my current one, and it had absolutely no chance with the fainting. I broke it quite quickly from fainting. Both of my bracelets were about $50.00 which seems to be a competitive price. When I ordered mine I asked my physician what I should put on it, and this is what she told me to put on and what I have on my current one. Full Name: Diagnosis(es): ICE (an In Case of Emergency contact number for someone close to you) and if you carry a medical card in your wallet with medicine lists on it it might also be helpful to put something like SEE WALLET Oh, this just popped into my head, I also prefer to order bracelets that you can have black engraving with. My last bracelet didn't have black engraving and my current one does, and the black makes it significantly easier to read. Hope this helps!
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