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Posts posted by potsgirl

  1. I fit the tall and thin mold. I'm currently 5' 8" and weigh between 110-114. I was 105 just a few months ago. I feel like I'm eating enough, and I feel full, but can't seem to gain any weight, and that's without much exercise. I've had to cut down on my work-outs because I've been in a "low" place lately and am too fatigued to exercise much. It's very frustrating. My PCP told me three weeks ago that if I didn't put more weight on, I needed to go to an eating disorder clinic...I did go to one once about 25 years ago, but haven't shaken all of my anorexic habits.

    That would be any interesting question to add - I'm guessing there might be a population of women/men out there who have struggled with eating disorders in the past. If anyone has, and you don't want to publicly write about it, feel free to PM me!

  2. Hi Azmusiclover,

    As you can tell, there are several of us in the Phoenix area. We really should set up a meeting sometime so we can all get together and meet. I've met Issie (wonderful woman) so far, and would love to meet more of you. I'm in Tucson, and my next appointment with Dr. Goodman (great doc!) is on Tuesday, October 9th. I'm sure we'll spend a night or two in a hotel up there, so if anyone's available...let's plan something!

  3. Hello Everyone~

    I've been having a lot of problems with my Midodrine, becoming tolerant of my dosages fairly quickly. I went from 5 mg to 22.5 - 25 mg in about 6 months. My doctor doesn't want me above 15 mg, but I can't function without the drug. It's a Catch-22 situation. I have also lost about 15 pounds after taking this medication, and am now dangerously thin.

    Northera, the drug that Chelsea Labs was trying to put on the market in place of Midodrine, has not yet been approved by the FDA, and it looks like another major drug company is buying them out and will hopefully get Northera approved in the US in the next year or two. I'm about ready to fly to Japan, where Northera is sold as "droxidopa" and has been legal there for years, with excellent results.

    Please let me know your thoughts and take the poll.

    Thanks and Cheers!


  4. Trach,

    My symptoms are very similar to yours, but my headache has been going on for about 6 months now. It's gotten progressively worse, to a point that I was in the ER before Thanksgiving and again last week. They gave me Ativan and Dilaudid. At home, the Dilaudid just didn't give me nearly the relief it did when given intravenously. My neuro dysautonomia specialist at Mayo is sending me to a headache specialist to see if those occipital nerve blocks will help me. I'm going on Wednesday. If I get the block, what should I expect the rest of that day?

    Thanks so much! Hope all the headache sufferers out there get more relief in 2012. ; )

  5. Since I've started having seizures and still pass out at times, I feel that driving would be a very bad idea. Not just because I might injure myself, but because of the harm I might inadvertently inflict on others. What a nightmare that would be! It's very difficult for me to be stuck at home all week, and I have to wait to do things over the weekend when my fiance isn't working. Thankfully, he's a teacher, so he has the next two weeks off, and of course other breaks and summer. We get in all of my medical appointments during his breaks, if we're lucky. Fun, fun!

  6. I had an upper GI about 6 months ago, and they diagnosed me with a small hiatal hernia and esophagitis. I take Prevacid now when it's acting up, and that seems to help. I still need to do a colonoscopy since I have issues in that area, too, but am procrastinating scheduling an appointment. I just have such a hard time swallowing all of the prep!

  7. Marcia~

    Usually you get a pacemaker if you have bradycardia and you have symptoms from it. Have your cardiologist do a cardiac monitor (Holter monitor) on you for a couple of days or a week. When I did it, they found that my heart rate was going into the low to mid 30s, and I was extremely fatigued all the time and either felt like fainting or actually fainted during some situations. They normally won't recommend a pacemaker unless your heart rate is in the 30s, or possibly low 40s. I know most cardio's don't seem to get too upset with a heart rate in the 50s, even though you may feel lousy.

    The pacemaker did help me, and it's set so that my heart rate will not go under 60 beats per minute. Of course, all of this would be individualized for you. You can't do an MRI and you have to be patted down at the airports in security if you have one, but they're doing more of that now, anyway.

    Good luck! Let me know what happens, and PM me if you have more questions.



  8. I was also diagnosed at Mayo with small fiber neuropathy after they tested some nerves around my ankle and calf. It started as burning in my feet, then pain progressed from my feet into my hands and wrists. It makes it very difficult to hold heavy things or open up things in the kitchen...Have you been checked for that? It can be caused by our autonomic dysfunction or other reasons.

    Hope you feel better soon,


  9. I don't have many problems flying, I just make sure to keep myself hydrated and get up to stretch my legs once or twice during the flight. You can contact the airlines and arrange a wheelchair to meet you at the gate, and they're pretty good about it. You may need to wait a little, and you're the last one off the plane, usually. Eat some salty snack while on the flight, and I think you'll be okay. Most likely you'll just be really tired when you get there. Plan to go one day early to rest before your appointments, and if you can afford it, stay at a hotel connected to the main clinic...it's worth it! I hope you have someone traveling with you?

    Also, you'll be taken to the side at airport security and 'patted down' instead of going through the electronic device. It's really not a big deal. You do still have to put all of your belongings through the security scanner like usual.

    Good luck!


  10. I have the same problems that you and giftcreations have. I don't feel like I'm having any problems, and then all of a sudden I need a root canal. I am waiting right now to get off my Coumadin so I can go and get 3 root canals and crowns done. I've been like this for a long time - all but the 6 teeth in my bottom front of my 22 teeth have crowns. Very expensive, too!

  11. I was diagnosed with dilated cardiomyopathy of my left ventricle before I was diagnosed with POTS. I was in congestive heart failure at the same time, and had absolutely no energy. They put me on Coreg and Coumadin (since I also had atrial fib) and eventually my heart got better, but I still have problems with it. Currently I have a blood clot in my right atrium that we're treating. Have you have an echocardiogram? I would ask for that test, because it's one of the best to see what's really going on with your heart. Then they can treat whatever is going on appropriately and hopefully you'll feel better.

    Good luck, and feel free to PM me if you have more questions. I think I got my dysautonomia diagnosis soon after my heart condition cleared up....



  12. I have a good friend that has similar issues to yours. The Viagra and other pills didn't work, but the shots did. He's very happy with the results, and you can start off with a low dosage and build up. I think you'd get used to the shot fairly quickly, I just had to inject myself for a couple of weeks to get my blood thinned out quickly, while taking Coumadin, and it really isn't that bad. Good luck!


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