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Posts posted by potsgirl

  1. 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!

  2. 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!


  3. Maxine~

    My heart goes out to you having all of these troubles right now. Sometimes I feel that traveling is just not worth the price some of us pay when we get back and have to recup for days or weeks.

    Believe it or not, someone here on the Forum has had the same trouble you're having with smelling smoke. She swears she can smell it coming through her walls. She lives in a townhome and shares a wall with her neighbor. It was driving her crazy, too. I'm not sure if she ever figured that out, but I'll check with her.

    Hope you're feeling better soon!



  4. So sorry you're suffering through this....I've had chronic constipation for many years, and a doctor in the ER told me to try 'Senna' tablets. That's generic for 'Senobkot', much cheaper, and you can find the generic at Target or Wal-Mart. I take two in the morning and two at night and am able to go every day, easily. It's terrific. I've been relying on them for about 4 years now, and my gastro and other doctors tell me it's safe to stay on it. I do need to do a colonoscopy soon, too, but I can't seem to drink the gallon of fluid that's necessary!

    Good luck, and let us know what works.

  5. I've used both Afrin and Flonase sprays and never had any reactions to either of them. I have bad allergies, and so I take the Flonase almost daily, and the Afrin for a week or so if necessary when I'm traveling and my nose gets plugged up. Nothing worse than a stuff nose and breathing out of your mouth - yuck!

  6. I have the same problem, especially when I'm having a bad headache or migraine. The back of my head gets super sensitive to touch, and I can't stand anything on my head at all. I can never wear headbands or barrettes anymore, either, which is a bummer because I have long hair and like to have some options to keep it out of my face. On certain days I can wear a loose ponytail.

    Well, now here's a new business for someone!

  7. I realize all of our stories are on this board, if not entirely, in bits and pieces. I was wondering if people would be willing to post just briefly their specifics. I forget who said what and who has what and who has tried which med, etc. without looking back through numerous posts.


    1. Jana

    2. 47

    3. POTS/OI, cardiomyopathy, diastolic dysfunction (possible amyloidosis), migraines, vulvudynia (chronic pain in vaginal area)

    4. 44

    5. Tucson, AZ

    6. Extreme fatigue, dizziness, syncope, very low BP, migraines, tremor, severe shortness of breath, loss of coordination, brain fog, GI track issues - wheelchair

    7. Fatigue, headache, shortness of breath, GI track issues - can get out and walk and perhaps do a short errand, brain fog - no wheelchair

    8. Cannot tolerate Midodrine or Florinef. Cannot take BB, any heart med that lowers BP

    9. Paxil, Xanax, Klonopin, small doses of Percocet when really necessary. Water, salt, yada, yada...Nuun hydration tabs



  8. I've struggled with severe constipation for years, when some times I couldn't go for 7 - 8 days in a row. After heading to the hospital one too many times, one of the ER docs told me to try Senobkot. It's natural and lets you go easily. I've used one in the am and again in the pm for the last 3 years, and have had an 'easy' BM 95% of the time, on a daily. It's been a lifesaver, especially since I couldn't tolerate the other meds for IBS, like Amitiza. You can find the generic, Senna, at Target stores for about $4.00 per 100.

    Hope this helps,


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