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Thanks Raisin! I got my refill from cvs last night but it took 2 trips and over an hour and they appear to be a different manufacturer- much thicker pill and different color.

Thanks for weighing in... it is unnerving. I am so relieved the a nearby CVS still has a supply. Going to try to pick that up today. Was feeling just awful trying to skip doses. Slept poorly last night. I can't afford to be off the meds next week or so because I'm to be observed and evaluated in the classroom for a new class I'm teaching

Hello all, I have run into a situation - tried to refill Midodrine on Wednesday, my usual pharmacy said they have none and can't get more because it is backordered. (?) I am trying to take only half the amount to stretch the small supply I have left. Was able to get another nearby pharmacy to try to refill for me with what they have left on hand. Trying to find out if this is an across the country issue, etc. Did some searching online and could only find it listed as backordered years ago. Would appreciate others on Midodrine weighing in! I really rely on this med to get through my work week. Hope there isn't more trouble with Shire and the FDA.

I already was on Zyrtec for environmental allergies before POTS onset. I can still tolerate it well.

I have learned that chronic illness will show you pretty quickly who really has your back, so to speak. Along with that, I've also learned to let go of the people who walked away because perhaps they weren't the best for me anyway or they just didn't have the capacity to understand/help due their own struggles. I have learned to be my own advocate and to persist in seeking help for the sake of myself and my husband and children. I have learned that chronic illness brings a lot of grieving with it. I have learned that motherhood is much more scary and hard now. I have learned how strong I am.

Don't mean to hijack this thread... but wanted to say hi Trisha :-) hope you are hanging in there!

Welcome Bethany, I understand this search all too well. I live somewhat near you - perhaps we could private message? After intense searching, I found a cardiologist who was willing to treat me. And that quote in your signature - I just favorited it last night as I browsed Twitter during an insomnia episode

I agree that research also helped with my cardiologist. I also gave him concrete examples of things that helped and didn't, which led him to let me try Midodrine.

Thank you, I really enjoyed it!

Ok, thanks lejones1, I wonder if they will dissolve? Perhaps I will give it a whirl tomorrow...

Uh-oh, looks like we've stumped everyone

Hi all, Just wondering if any of you have ideas of any ways I could avoid wasting the two bottles of ThermoTabs salt tablets I have sitting around my cupboards? In my initial excitement/desperation for relief back in the day, I overbought before trying them. Found them hard to tolerate and have since found other ways to get salt that work much better. So anyway... what might I do to avoid throwing them away? Thanks! (This is definitely a POTSproblem LOL)

A great, big thank you again to all of you who have given me your kind words, empathy and virtual companionship. This is, at times, the loneliest road I've ever walked, despite lots of other life challenges, but I can't give up and this forum has been crucial in keeping me going... one day at a time. kJay, your posts brought tears to my eyes and I will re-read them over and over, I am sure! Sending a very sincere, thankful ((virtual hug)). I found out I may have access to a limited amount of sessions with a therapist via my job, so I am hoping to explore that option. And we are going to have our little ones start at a preschool, which will give me a desperately needed break two mornings a week.

Fascinating, I know there is an older thread about this because I searched "sudafed" the last time I was sick, maybe in January, and had randomly discovered I was functioning better even though I was dealing with a virus on top of the chronic stuff. I was shocked to see numerous folks having the same experience. Fast forward to today, my first follow-up with my new cardiologist. He ended up adding a Midodrine prescription for me to try in 2-4 weeks (after I adjust to taking Fludro 1x day) simply because I mentioned off-hand that I was currently taking pseudoephedrine for a sinus bug and was functioning better, especially regarding concentrating at work. When I got home, my husband said, "wonder why they don't just prescribe Sudafed for POTsies?" Especially since the Mido turned out to be quite expensive $$ ouch.

I empathize! I always get nervous. Hope all is well.

More good suggestions to explore, MomtoGiuliana, thank you for this. I appreciate the affirmation, kJay. Were you open with your kiddos about your condition? Perhaps your are right that this will in the end help my children be better, kinder people. It is hard not to feel guilty about being a sick mommy...

MomtoGiuliana - Thank you for your understanding words! I guess I decided to reach out to this group as a first step in seeking help and companionship for the same reason you mentioned. I agree counseling would be helpful at this point because I'm trying to sort through so many things. Wonder how people pay for this though and how I could possibly arrange it without the children... Always hoping - Wow, we seem to have lots in common! I'm so sorry that you are familiar with the same fears. It is important to be reminded that we are not alone, though we feel alone most of the time. Feel free to message me whenever. I can't believe I've 'found' another adoptive mom with POTS! Noonoo - Thanks ever so much for sharing your story! I would very much like to connect with other mothers with POTS or chronic illness. I do want to try some therapy or counseling if I can figure out a way to make that happen. That is so interesting that you were able to get a little bit of help from a parenting organization. I've never thought of that. Are you in the UK or US?

Hi all, Apologies for posting something that feels negative, especially with all of the trouble and tragedy in the world right now. Just trying to reach out to anyone who might understand or have suggestions. I am really struggling with the reality of having a chronic, invisible illness while trying to parent 2 young, challenging children and also keep my job. Trying to work through my own feelings and accept the reality of my family's situation is very lonely. My spouse has really come around and is the only person who comes close to understanding. He carries a great burden, too, because he has to pick up my slack sometimes and he 'lost' a very energetic, capable wife with no warning. We do not have help from either of our families. Both of our sets of parents have made choices that suited what they wanted and have rendered them unavailable to help. It is hard to control the hurt I feel at the lack of support and to fight the trapped feeling, knowing that every day, it's up to me alone to get out of bed and make the day happen no matter how I'm feeling. We attend church also, but so far we've received nothing more than offers to pray and awkward questions like, "aren't you feeling better yet?!", etc. Lately, I've noticed that I am wanting to withdraw from most people because it lessens the hurt. Even though I'm an introvert, that is not normally like me. Just finished reading and marking up the book, Sick and Tired of Feeling Sick and Tired: Living with Invisible Chronic Illness by Donoghue and Siegel. It was helpful, but also challenging. I am trying to learn how to communicate my situation to others accurately without sounding like a constant pity party. I am trying to figure out what it means when my a very close family member texts me saying she knows I'm not doing well, but does not offer any assistance - or even a gesture of caring. Does anyone have any words of wisdom to help me work through this abandoned feeling? I have experienced several challenging, stressful life experiences in the past 5 years, including the foster parenting & adoption process, and all of them have in common that they are very difficult for others to understand and they made/make me feel isolated. Perhaps I am experiencing some sort of grieving process. Thanks for listening...

Thank you all, this is super helpful. I am trying to practice patience. I am thankful for the opportunity to try this medication and feel good knowing the MD wanted to start out conservatively and took my small build into consideration. Deep down, I want to take it every day - and maybe I will be able to after some time - because even subtle improvement is so welcome.

Thank you for sharing. I like to know what to watch out for because I've had adverse reactions to other meds Sounds like your side effects were immediate and major! I haven't experienced anything like that yet. Fingers crossed :-)

Thanks Corina! I have more hope than I have in a long while. Do you mind sharing why it was intolerable for you?

Hi all, had a breakthrough last week in my first visit with a new cardiologist. I sought him out for a second opinion after hitting the 1 year mark and still not feeling better. Felt like my PCP and the initial cardiologist kind of wrote me off. So it was so surprising to have him listen and believe me 100%! He felt comfortable starting me on Fludrocortisone at a very conservative dose right away. Right now, I'm only taking it on Mon/Wed/Fri. I know I need to give it some time and be prepared to adjust dosing if needed and I've searched the forums for threads on this drug, but if anyone has anything they want to share that worked for you with this med, feel free

That is interesting. I was not able to tolerate Trazodone, though I liked how it was helping me get real, restful sleep. It exacerbated a lot of my autonomic difficulties. I'm sorry I don't have any solutions for the headache issue. I do have a headache on most days, but I'm sure if it would qualify as severe. It sure does make it hard to concentrate.

Glad you have Mayo to "look forward" to... I hope it is greatly valuable for your diagnostic journey. I am relieved to have this step over with and to find that I tolerated the procedure well.

Hi gjensen, finding the root of our problems does seem to be the ever present challenge, doesn't it? In the beginning, I brushed aside EDS for myself also because I didn't think I fit the profile. Now I am increasingly suspicious as I learn more about it. It's hard to know how many specialists to see and how far to pursue hunches...