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Everything posted by srb

  1. Midodrine has been the most helpful med for me so far. The goosebumps, coldness and skin crawling have unfortunately not subsided for me after almost a year - but I can tolerate that in exchange for the significantly improved functioning. I take 5 mg 2-3x a day. I work and I have two preschoolers so I need all the help I can get. I believe it depends on each person how many side effects they feel they can tolerate.
  2. I can really empathize with your thoughts and feelings, Jeng5158. I had to get a second opinion before I got help. And I have moments when I'm proud I didn't give up and moments when I feel so guilty for all the time and money spent on this horrible disorder. I just received a bill of over $3,000.00 for lab work - just lab work - because I decided to finally pursue the hypermobility/EDS possiblity for the cause of my POTS. Ugh. So I don't have answers for you, but I do understand that unbelievably frustrating place you are in... For me, I felt that I needed medication to meet my responsibilities so that was the main reason I persisted I guess.
  3. That's a great link, Katybug. I am thinking about getting a pet also, but I worry that would be selfish because I can barely take care of myself and my family already!
  4. The midodrine helps me with this some, but it can be brutal when it's wearing off. I'm supposed to try a stimulant like Ritalin soon
  5. Thank you looneymom. I have never heard of LDN.
  6. I was diagnosed without the TTT. However, the rheumatologist I just saw did inquire as to why I had not had it done. Here is the article that was posted on Facebook by DINET recently regarding this issue: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3478101/ I noted that the Dysautonmia Clinic posted a response in the comments when it was shared there.
  7. Yes, my cardiologist recently gave me permission to reduce the Florinef if I'm able to tolerate that. I'm trying taking it every other day instead of every day. I've quite a bit of blood work recently and things seem okay except for slightly low potassium.
  8. Thank you for replying with your experience. I'm encouraged to hear how it did help with pain. The lists of side effects online said about decreased appetite/nausea so I'm surprised to hear about weight gain. I already have a bit of a weight gain issue with the Fludrocortisone (Florinef) I take :-(
  9. Hello all, I searched past threads and read up on members' various experiences with Cymbalta. Just looking for any more recent input or anyone taking it for joint pain associated with hypermobility.
  10. Hmmm, I can't say that I recall having that problem. I had the Upsher Smith brand in the beginning. But now I'm stuck with Mylan brand again. And I'm also having trouble splitting them, even using a pill cutter.
  11. I also rely on caffeine along with the midodrine to keep myself going. It doesn't cause me the adverse effects that I have seen many others mention. The only thing I have to be aware of is to get enough protein/grazing snacks along with it.
  12. Yes, I have heard of it and suspected that it was the answer to my eating difficulties as well. Ever since I started following the eating suggestions for people with rapid emptying, I have been doing much better. The study that Aimes posted above was one of the keys in my research on this.
  13. Just wanted to add that I talked to one of my pharmacists the other day and asked about getting back on the Upsher brand but he claimed that he couldn't get any other brand other than Mylan currently.
  14. Oops, meant FDA approval... I was forced to switch to the Mylan brand for the time being 'cause it's all I can get, but I would like to go back to the Upsher.
  15. There was a past thread about this - http://forums.dinet.org/index.php?/topic/26340-midodrine-backordered/ Also, Lauren Stiles (of Dysautonomia International) looked into the problem and posted an update on the facebook POTS group recently. I believe she found that the one prominent manufacturer had stopped producing or run out and it caused an overall shortage. She was not able to find a link between the problem and the ongoing FDS approval process for Midodrine. If I can find that post, I will reply again.
  16. I have this as well. It is quite frustrating. Also hard to explain why I try so hard to avoid naps despite always being so tired.
  17. Hi, this question may relate to mine in this recent thread: http://forums.dinet.org/index.php?/topic/26340-midodrine-backordered/ I'm actually not sure what brand I'm currently taking, but it might be the Mylan because they are thick, hard to swallow. They are a white pill, with an "m" stamped on top. These are the ones I was able to get as a stop-gap from a CVS (not my usual pharmacy). I was happy with previous pill that I had been on since first starting this med and I'm still confused about what is going on with it. My pharmacist suggested getting my script rewritten for 10 mg to cut in half (I'm on 5 mg dose) because he still has those in stock. Ugh.
  18. Hi TaraMc9, so sorry to hear you're having the same problem that I am! I am flabbergasted that my pharmacy didn't offer any assistance either. I had to insist that they at least call me when they receive some (which they still haven't). I was able to get a month's worth via a local CVS. As a librarian and college instructor, I put 10x more effort into making sure students have the information they need than my pharmacy ever has toward making sure I or my daughter have the medications that are essential to getting out of bed! My husband did go back to my local pharmacy last weekend and asked if they are still out of stock. The pharmacist acted surprised that he was even asking BUT, when pressed, he did say that he had 10mg in stock still and if I could get my prescription rewritten (I take 5mg), we could cut those in half. So, that's an idea you might want to try also?
  19. Wow, thank you Katybug and Raisin. Your words mean a great deal to me. It didn't/doesn't feel a brave thing to do... I'm always afraid of being seen as a whiner or a weakling. But vulnerability and honesty is not really weakness. Knowing with whom to trust our feelings and struggles is the tricky part, I guess. It's harder after having bad experiences. I think one of the reasons I finally shared was for that reason you mentioned, Raisin, to try to stop the feelings of aloneness and embarrassment from growing any larger, to bring myself back from the edge of quitting. Another reason was to try to encourage people to look around them because there might be someone nearby who could use some help or encouragement. Sometimes I am acutely aware that all around me are struggling people. And I feel unworthy to share my struggles as a result. But I had one person on facebook tell me that it helped them to read my post, that it put their own problems in perspective. So I guess there are ways of sharing even difficult things that can help others!
  20. Donut crumbs, huh? Exactly why I detest beards. I've thought of numerous things over the last couple years, but can't seem to settle on something. Maybe that's why I haven't done it! I had a close friend who was a veteran and gave me a nickname that I really treasured and used to motivate me - "little Marine" - so I thought I was going to get that since the Marine Corps is one of the ultimate symbols of strength and loyalty in the U.S. But we drifted apart as I became ill so now I'm not sure if it would have the same positive force to it. Have also thought of using my children's initials in some way or a snippet of favorite song lyrics (but I have so many of those!). Will post again if I remember other ideas... super hungry and tired-brained at the moment.
  21. When I first started reading this thread (earlier in the week), I was in such a discouraged place that the positive words of others didn't even break through. Long story short, I ended up posting something very honest on facebook about barely coping with chronic illness while also being a working mother. This was a first for me... had always been very careful and guarded about what I chose to reveal on there. I almost deleted it immediately; I was nervous and mortified. But what kept me from deleting it was my hope that someone would see it and it would help them be more kind or empathetic to another struggling soul. I ended getting some amazing, Kleenex-worthy responses, many of them from my awesome work colleagues. So I guess my way of being kind to myself this week was to be brave enough and transparent enough to show weakness/struggle. It's humbling, but empowering. And I have a whole list of comments that I can go back to and read now - plus a pretty good idea of who's "got my back," aka who I can turn to in the future.
  22. Hi Sarah, I've considered a tattoo for similar reasons... so I'm following your thread ;-) In my case, surviving the process of adopting through foster care along with the onset of POTS seems tattoo worthy to me! Similarly, most of the folks on this forum survive so much - we all deserve major credit I have piercings but no tattoos. I also have wondered if I would be able to tolerate it okay now. I don't have a needle fear, but I don't always know how my body is going to react to certain things these days.
  23. Thanks for chiming in on both points, E Soskis! I just saw that FDA list, too, when I was trying to research the Mido problem. It's a long one. I was not able to get even a partial fill and the pharmacist did not seem at all concerned and gave no indication of how long it might be. My level of functioning is significantly worse without Midodrine but I guess they don't understand the urgency for some reason? It seems numerous people have had this supply issue, so at least it seems there isn't a problem with the drug's approval or something like that.
  24. Glad you got it with no problems. Hope it gets resolved in my area soon.
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