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Everything posted by iheartcats

  1. Tomorrow I am switching from Lo Seasonique (which was working OK overall) to generic Seasonale. The primary reasons are: 1. My Doctor says Lo Seasonique is too low a dose because I may have PCOS and she wasn't happy with my hormone results, etc. 2. Cost - LoSeasonique is around $200 a package. Generic Seasonale is $30! 3. PCOS may be contributing to my difficulty losing weight so that needs addressed Seasonale: (levonorgestrel/ethinyl estradiol) Tablets 0.15 mg / 0.03 mg LoSeasonique: (levonorgestrel/ethinyl estradiol) Tablets 0.1 mg / 0.02 mg From what I can tell, the hormone levels don't look dramatically higher. I used to take Seasonique years ago (which is supposedly similar to Seasonale). It is the 'same hormone' so the Doctor doesn't think I'll have adjustment issues. The pharmacy told me that generic has to be the same hormone as regular - the only 'difference' may be the filler color/packaging. Does this sound accurate (I hate switching up medicines!). Do you think I have a chance of avoiding noticeable side effects? I'm hoping this change goes smoothly!
  2. I can't get Global anymore (what I currently take) My RX plan changed to Apotex, so I am glad to hear that it's decent. I can't get brand, but I wonder if Shire will or won't be making it any longer?
  3. Primarily Irish, Scottish and English with a bit of Scandinavian thrown in. Basically, one of the folks who can never have a tan! I am fairly certain it goes through my mother's line (heavier on the Irish) because my cousin was just diagnosed. And my grandmother and mother both have had some 'strange spells' and other things they like to ignore.
  4. I had 23andMe done because I find genetics intriguing. (they have a sale for $99...it's usually $400!) I went and looked up my SNP for this: http://www.snpedia.com/index.php/Rs1611115 and I'm CC so it looks like I don't have that specific abnormality. I understand the dominant versus recessive, but I agree that we don't understand enough to know can one carrier gene cause slight issues? Look at Sickle Cell Anemia. Double recessive means you are very ill. One recessive gene protects you from malaria! Good luck finding out more, I'm glad others are interested in genetics.
  5. I always get a flu shot and haven't had an issue. I hate getting the flu with POTS. It's just awful!
  6. I didn't know they sold shields you can put in your shirts so I must look those up. I'll try that to help not show my huge pit stains. It is intriguing many of us have some kind of sweating issues! I know I'm not having hot flashes yet (boy, I can't wait for that - sarcasm!). I prefer the 'not sweating enough me' but she has gone away for now. The worst of it is how it varies so much over time. Tablet: Let me know what you find out from your testing. I still am not 100% what this POTS is...even if it is post-viral is it throwing something else off making it worse? I'm still digging!
  7. I remember many years ago (pre-POTS) I went through a phase where I had excessive perspiration, mainly the armpits. It was embarrassing and uncomfortable but living in a cold climate at the time I covered it up and used some strong antiperspirant. It is now back and I suppose it could be 'one of those things' and I am just unlucky...or it could be related to ANS. It's really gross and uncomfortable. Calm and not doing much on a not too hot day I'll sweat like crazy, full wet armpits. If it's hot or I'm busy, it's even worse. It's not good on my clothes either. And it's mostly just the armpits! Sometimes the face, but I blot that easier. I just bought Certain Dri (which I hear can work wonders but can itch/be annoying at first) as people recommend to try that before a prescription kind. I hope it helps, but I'd love to get at the root of the problem, but that's unlikely.
  8. At least I don't feel alone now! My short-term memory is much worse than it was before POTS on some days. People I know notice - but you should've remembered that! How'd you forget this? Well. POTS can do that to you! I have a pill box so I have to get good at using it and maybe add an alarm/check off list or something in case I think I took something and didn't.
  9. I had some things going on and was busy and completely spaced my afternoon dose of Propranolol and Midodrine! I'm feeling OK (a little tachy because Propranolol keeps that down, but not terrible). I've never just 'forgot' a dose of my medicines. I've overslept and had to miss my morning dose before, but not forgot. My prescription info says if you miss a dose, if it's within four hours to your next dose just wait (and I can take my evening dose in a couple of hours). But...I'm not that old and I feel like I'm losing it sometimes. I didn't feel 'anxious' until I realized I was two hours late with my medications so I'm sure that's just me being paranoid.
  10. Thank you so much! I know a lot of medicines are trial and error with us but if I have to change to a selective BB I want to be prepared.
  11. I get random hives that can't really be attributed to anything. I take Zyrtec and Zantac because of this. I've had allergic reactions and had hives from certain make-up, skin cream, etc. but they seem different, they are more itchy and more bumpy, if that makes sense. The random hives are what drive me crazy. I did get horrible hives from Cashews once so I was told to avoid them. My other nut allergies were negative but I avoid them because of cross-contamination with Cashews. Sometimes I get hives from eating something one day, but not the next day.
  12. Hello all! I've had my ups and downs lately and am trying to get things together for my annual visit with the POTS Cardiologist. I'm currently on Propranolol and it's helping, so that's a good things. It's a 'non-selective' Beta Blocker, though, and, while I've kept my allergies (and thus my allergy-induced Asthma) under control, I wonder if there are any selective Beta Blockers that you use that work for POTS? I want to take a few discussion points to my doctor, and this is a concern in case I have to switch Beta Blockers down the road.
  13. "I am wondering how many younger women out there have had an ablation and then subsequently (within a few yrs) developed POTS." I would like to know this too. I had an ablation in my late 20s because my HR got 'stuck' at more than 230...it was 260 at one point and I had to have IV medicine to stop it. The EMTs couldn't stop it (I was doing nothing that day, folding laundry, so maybe I bent over!). I took a few months to think it over and figured if they could stop this type of thing from happening (since something in the upper 200s at a constant rate can be dangerous), it was worth it. I was diagnosed with POTS 3 years later, with symptoms about 18-24 months after the ablation.
  14. I think I've had POTS 3 years now - I do know I need to increase my activity and am trying to work on that despite setbacks. I've found a medicine plan (as long as Midodrine stays available for now!) that helps me. I am probably 50% better on my medications. I do hope I have a big recovery in the next year or two. You always hear the 4 or so years. So I'll try to stay hopeful.
  15. Hello everyone, I'm still here - just been away for a while with my energy going into what I had to do. And dealing with horrible heatwaves. The second this month is really trying on me...my body just does not take constant heat with no escape very well! I think I tried to ignore my POTS a bit but it's still there and annoying. I'm doing what I can to feel OK, but it's so difficult. My big problem the last couple of days is a terrible stomach ache so it's very hard to get down liquids. And heat + not enough water or G2 = no good!
  16. I felt better after my chilly shower - so thank you for the suggestions. My wet hair really helped in front of the fan! I have no V8, but will pick some up and keep it on hand. I think I'll eat a banana for potassium later (wasn't much in the mood to eat in the heat). Thank you again!
  17. I'm so upset about an awful heat wave - no one ever told me it could get more than 100 degrees here! With no AC, I'm feeling just awful. I'm drinking as much G2 as I can (and eating chips and cheese for salt/protein...it's all I can stand at the moment). I'm by a fan. Just the dizziness and wooziness are terrible. I'm about ready to stand in cold water but I don't know if that really helps.
  18. Congratulations! I guess the bright side is - you know what was good and bad from number 4, right? So now you can make this one go more smoothly!
  19. Julie- I will have to try the specialist how important it is for me to start on a very small dose...how did you guys do it? Did you increase weekly? Monthly? Did you cut pills or use liquid? Thanks!
  20. I've wondered if Celexa would help (or something similar). I'll discuss with the specialist I see in the fall. I never wanted to take an SSRI as I just don't think science completely understands the brain yet, but if it helps, well, I guess it's worth a shot.
  21. I'm loving how Pharma is blatantly more about profit than helping people. Anyway, we'll have to see if the generics will do anything. I emailed TEVA and haven't heard back from them yet. They are a very large generics company. Has anyone noticed how costly the generic is? I've never seen such a costly medicine before. You think the generic manufacturers would be making some profit.
  22. Thank you, Dakota. That's a relief. Now...I have to figure out how much midodrine I have left. I assume I'll have to wean off! Anyone else think they will, too?
  23. I was reading Celexa (Citalopram generic) was similar to Lexapro. Others with generic are Prozac, Effexor, and Zoloft. I'm not sure if Prozac has the midodrine effect, but it is an SSRI. Anyone who can share any info on these will be great. I think I'll talk to my specialist about Celexa (generic). I know generic versus brand can be picky for antidepressants but that's what I want to start on generic (much more affordable for me and if one works, wonderful).
  24. What types of SSRIs do people take? I have to go see my specialist in a couple of months because of this. I prefer something that's been around awhile (generic!) so would rather start with that and go from there. Does anyone take SSRI's with Beta Blockers? I just can't give up my beloved propranonol.
  25. I just spoke to my original doctor in Chicago who put me on Midodrine and she knows it made a difference in my quality of life and how I function. She prescribes it to many patients. There is no alternative and many people on it are upset and worried. I wonder what we can do? Should we contact news outlets? It is greatly going to affect quality of life for many of us and the drug is safe and effective for OI.
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