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Everything posted by iheartcats

  1. Propranolol has been very helpful to me - it's helped lower my standing HR from 150-180 to about 80-100. So that's a big improvement for me in addition to reducing some overally jittery feelings I get from POTS. My allerigies are acting up and I am showing minor asthma symptoms from a lung test. Propranolol is the medicine (and Midodrine) that have allowed me to go back to work. It's not easy...and I struggle with fatigue and other issues...but I'm making it. This switch is huge to me. I was told the two Blockers are fairly similar and to start Bisoprolol at 5mg for a few days and if it's not enough, up it to 10mg. I was also told there would be an adjustment period (the first week worse, the first month overall adjusting). I'm only allowed one week off of work for medical leave to do this, so I'm hoping for the best. Any advice on switching Blockers and using Bisoprolol?
  2. Thanks, Anoj. I'm adding that to my list to discuss with my Cardio. Do you find it lowers your HR well?
  3. I noticed I'd been more short of breath than usual (also my allergies are acting up more than usual, so that could be part of the problem). I know I get a bit winded on POTS so I didn't terribly worry about it. But then my Doctor had some concern over this lingering cough I get - especially after a bad cold. It'll hang on and isn't bronchitis. He told me I really needed to get a Pulmonary Function Test. I had one about 4-5 years ago and it was all clear so I was able to take Propranolol. This medicine is very helpful. While not making things perfect, it's one of the meds that at least allows me to work. I do get exhausted some days...but I'm able to function. Now, apparently the Pulmonary Function test I just had is indicative of Asthma! I'm so distraught. I see my PCP later this week then go meet with my Cardio at the end of the month and I know she's mentioned selective Beta Blockers, but it's hard to find one that works. I know Metropolol didn't work - Atenolol is another one that was mentioned so I just want to go in with a list of a 'top 3' to her and be like hey, can we give this a go or do you have more suggestions? She also suggested Cymbalta...so I'm wondering if I'll really need that now that I'm going to be on a selective Beta Blocker. I refuse to add more than 1 medication at a time, so I'll start with the new BB. It's double stressful as I'm probably going to have to take a leave from work and I don't know if I'll have my job to come back to. I need it. But I need at least a week to adjust on a new Beta Blocker so I'm hoping to get through this. I don't want to be back to how bad I was feeling three years ago. I'm glad to know Atenolol was helpful to you...that makes me a bit more calm. I'm having such a rough time right now! But...if you have asthma I've always been told you shouldn't be on Propranolol! I am taking mine until I see my Cardio at the end of the month (I'm at the spot where I've been on it 3 years, what's a couple of more weeks), but I don't think it's the best idea for me to stay on it long term.
  4. I take Propranolol which really helps me function - I do not think I could work without it. It really makes a difference dropping my HR from 140-180 to 70-90 and letting me function. I've looked up a list of CardioSelective Beta Blockers. Does anyone have experience with any of these? I did try Metoprolol once...it made me vomit all day so I'll avoid that one. But, anyone's experience with any of these would be help. I see my Cardiologist later this month and will be switching at that time. I'm quite upset as I really depend on my Beta Blocker! Acebutolol (Sectral®) Atenolol (Tenormin®) Betaxolol (Kerlone®, Betoptic®) Bisoprolol (Zebeta®) Esmolol (Brevibloc®) Nebivolol (Bystolic®) Metoprolol (Lopressor®, Toprol-XL®).
  5. I had some testing done and they don't think I had MCAD. I remember doing it a few years ago...I have bad allergies, but they didn't think it was MCAD. I do get high ANA-levels and have some kind of autoimmune thing they can't figure out going on! At least, autoimmune-eds-POTS is somehow driving me mad! I hear the interstitial cystitis can come and go and they aren't sure why, either. I'll have to keep track of what I'm eating, etc. but it did really start to misbehave after fighting C-Diff w/ hardcore antibiotics. I guess I'll have to venture to the Urologist for the test to know for sure. The bladder pain/urgency is a real hinderance. I feel like I'm always on the lookout for toilets.
  6. Hi all - I've been gone a bit because life has been overwhelming handling work & POTS. It seems to suck my energy and I just haven't had time to do much else. I finally saw my geneticist and he thinks I may have Ehler-Danlos Syndrome, Type 3, Hypermobility. The cases he sees varies from mild to severe - and while mine is mild, he thinks it probably is enough to affect my blood vessels to cause pooling/POTS. Of course, one can't say for sure as there is no genetic test for this version now. My cousin and my sister both have POTS (cousin is officially diagnosed, somehow my sister ignores it and avoids getting a DX!). My mother also has fatigue/fast heartrate often but also ignores it. I think I just have it worse enough to need medication, treatment, etc. The geneticist said it'd be unusual to see it in my family like this with no genetic component. On the one hand, it's intersting to maybe find the link. On the other hand, I'll never get better? That worries me. But I didn't always have POTS. So is there still a chance for improvement? They just don't know. My meds help enough I can get by, but not at 100% and you guys know how hard it is. And since EDS is usually Autosomal Dominant, I'll definetly never be having children. It's been a rough week.
  7. My POTS likes to throw out new issues once in a while - - you think you get some things under control and wham, here's a surprise. I was unfortunate and had C-Diff last winter. I took the proper meds and healed up, but I started to get more UTI's after. I do what I can to avoid them, but they kept coming back. Now I'm having symtpoms (frequent urination, very slight burning, urgency). Not terrible, but they are there. The Urologist wants to do a 'direct stream' test (those hurt so much!) because I don't want to use antibiotics if I don't have to because of the C-Diff I had and, obviously, no need to take them if they aren't going to help. They think it might be interstitial cystitis rather than a UTI. I'm a bit stressed over this as I'm just getting over a slight stomach bug and will have to miss yet more work to go get this. But the UTI symptoms are so uncomfortable. When I research interstitial cystitis, it doesn't look like much can be done. So I'd rather it NOT be that.
  8. Debra...Wow. You did have a worst-case scenario and that's very scary. Since mine seems to be responding to Flagyl, they feel it's a normal strain but I'll find out more when I see a GI tomorrow (they are squeezing me in because of my concern/situation). If the Flagyl wasn't working, I would be having many more 'movements' than I am. I'm also trying to eat more (I did not eat much for about 5 days) and that in and of itself is problematic especially with POTS. But I feel so bad you had to get such a resistant strain. I am afraid to take antibiotics too and I'm prone to sinus infections and bronchitis. Going forward, I have to only take antibiotics as a final resort and that's scary. I did not think about the meal. I will explain to my family why I cannot help cook. They will understand! I will also practice the good hygiene as I don't want to pass this on. I do read about people having C Diff for weeks and going undiagnosed...and that's somewhat common? You would think it wouldn't be. But it's scary how easy this is to pick up, and how people don't even know they have it and how it's hard to avoid stuff. I'm glad they caught mine early! And...I have to make the husband do the bleaching of the bathroom again. I just bought some and cleaned it yesterday! Such a pain when you're so tired, as you understand. I'll let you know what the GI says tomorrow!
  9. Flagyl seems OK to me...it's not bothering me in any major way thank goodness. I've had mild to moderate stomach pain for a while so I think that's just part of the C Diff. They did tell me Vancomycin is used as a second-round if you need it (they try to clear on Flagyl for 10 days). I also started a probiotic with '4 strains' so of course it was $30 for 30! It says it's usually 1 a day, but you can take 2 dealing with various gastro issues so I'll be taking 2 for a month. They caught mine somewhat early. It started on Friday and I was on Flagyl by Tuesday evening (apparently they don't always catch the C Diff that quickly or people think it's just food poisoning/flu). I'm very glad I pushed for the culture so soon! I think that really helped. Still hard to force food. Lots of saltines and yogurt.
  10. MomtoGiuliana: I'm very glad to hear your sister's cleared up fairly quickly with Flagyl. I keep reading the 'worst-case scenarios' online (I'm sure you know how that is!)...but my Doctor keeps telling me Flagyl and Probiotics often make you feel better in a few days. And stopping my problem antibiotic should help, too. Still, very stressful!
  11. I was very optimistic it wasn't C Diff. The Doctor didn't even think it would be...but alas, it came back positive. I'm panicking due to a flight I have Sunday, but he said if I start Flagyl tonight with a very good Probiotic I should improve within a few days. I knew I felt really bad - and it's even worse because I took a dose of Imodium today. I'd been putting it off (they kept telling me to take one to stop the intense diarrhea and I wouldn't, but finally gave in). They said one dose wouldn't cause that much issue, but it would cause the severe abdominal pain I'm having. I can't believe it. I almost didn't take that does this AM. I'm glad I did not take more. I'm also glad that I listened to you guys and got the C Diff test today. Thank you for telling me to do that. For those who have had this - has anyone felt somewhat better in a few days? Should I wear Depends on the flight? I already have a cane chair and medical note for POTS...I don't know how much more I can deal with.
  12. They did tell me to eat light and mentioned these foods. I have bananas and I'll force myself to fix rice later. I think applesauce sounds edible so I'll try that, too. Even if things are finally calming down, I don't want to stir them back up until they settle. Thank you!
  13. Thank you everyone! I, too, hope it's just an issue from the antibiotics (if so, the worst should resolve in the next couple of days). They did have me take in a sample for C. Diff just in case. And I've halted the antibiotic (I was worried about this, but for severe diarrhea, there isn't much choice). I need to clear up the diarrhea and get back to form somewhat by Saturday. I can't believe how fatigued I am feeling, way worse than usual. I am still drinking Gatorade and got down a little soup (they said I do have to eat...I realized I barely ate on Saturday or today and only minimally Sunday/Monday). I guess that's bad in and of itself. I just didn't feel like it and forgot. The Imodium is still holding up. It does beat sitting in the bathroom all day. IDreaminColor: Five months? I don't know how you made it. That's terrible! I'm sitting here with my Probiotic getting up the nerve to take one. It's funny, once you go through things you are afraid to add one more thing! The Pharmacist said he never sees any real issues trying them as they are normally in your stomach, anyway, so let's hope it goes OK!
  14. I've picked up a Probiotic - so I guess I'll use it. I'll have to look for 10, I didn't see that. Fortunately...the Imodium has stopped and I'm *hoping* halting the antibiotic will help. But it's scary. I'm calling my PCP all upset and I just don't think they get how bad it is with POTS. If it kicks back in, I will look up a local GI Doc just in case. It was so bad I was crying last night. It's awful!
  15. I was on a round of antibiotics for a sinus infection, but it literally made me go to the bathroom, in tears, 8-12 times a day for the last 3 days. I've been drinking G2, Ginger Ale and Water but still have a throbbing headache. My PCP finally stopped the antibiotic and had me take Imodium today as it just has to stop...I can't stand to lose any more fluids. We're waiting on a lab result, but at this point I couldn't go on losing fluids. He said it'll take a while to get my fluids balanced, but to keep hydrating. Any tips to what else I can use? Should I try Pedialyte? I'm very upset as I fly this weekend for a long-planned family event so I have to improve. Horrible timing. Thanks for any help!
  16. My Cardio wants me to have additional liver tests just in case, but my complete metabolic panel looks fine overall so she really doesn't think it's anything with the liver/kidneys. Let's hope not! It could be from way too low protein (I don't like meat)...but I have to have additional blood tests, eat more protein, and see what happens. I'm a bit nervous, but hopefully it's just not enough protein? Or I'm losing too much through my kidneys (which with the weird stuff POTS does that wouldn't shock me either). I'll reply here once I have my new results. She did say it's not a good one to be low as it causes even MORE fatigue on top of what I'm having and could be why I'm struggling so much to get through my workday.
  17. I'm upset because my blood tests came back today and my Albumin is quite low. I've read through the site and Internet about this and things keep pointing to liver or kidney failure (which I don't think I have) or possibly an autoimmune issue (which I may have as I have elevated ANA on and off). I've been very tired lately and barely able to push through work, and I have a busy few months ahead with work and holidays. So this is the worst possible news today. Has anyone ever had low Albumin levels? What does it mean with POTS? Thanks everyone. I'm very stressed now!
  18. I always hear you aren't supposed to lie down after taking midodrine, or at least not extended periods of time. I have heard this usually only applies to people on bedrest or with other extenuating circumstances. Well, my half-hour rest turned into 2 hours. I took my BP when I got up (122/90...higher than usual, but not terrible) and then lying down and it was 119/85. I waited a while again and it was 117/85. It's a little high/all over today but I've not had enough fluids yet and I'm sick so it's not so out of whack with me being sick. Have you guys ever been told anything about midodrine? I am up now and seem fine....so I assume it didn't bother me terribly much. I try not to do that!
  19. I am currently taking Macrobid and it's not causing any additional POTS symptoms. I took another antibiotic a few months back (can't remember the name - something with a 'cilin') and I had a bad bout of diarrhea at the end but I was told that's common whether or not you have POTS. I took that for whooping cough so I had no choice...I just had to fluid load during the diarrhea and eat bland. I had a rash while taking Cipro once so they avoid that and I'll only take it as an absolute necessary. We aren't 100% sure it was the cause, but why chance it. I hope you find something that works. All antibiotics do give me a bit of nausea, but nothing unbearable.
  20. Thanks everyone. I'm tolerating it well (yeah!) and it should help me feel better in another day. The UTI was unbearable and keep me awake at night so the antibiotic is worth it!
  21. Since I'm in pain from the UTI, I took the antibiotic. I seem OK. I'm embarrassed because I think I had a mild panic attack (anxiety, shortness of breath, anxious, etc.) but was OK after just relaxing for 20 minutes. I feel like I am the only person in the world who gets so anxious about medication.
  22. I unfortunately have a UTI. I didn't notice at first...but it's worsened and uncomfortable now and I need to take an antibiotic so they gave me Macrobid this afternoon as Cipro gave me a rash once. I had the Pharmacist run my meds and nothing conflicts, but it does have a warning it can cause/worsen Peripheral Neuropathy. I don't really have tingling (well, sometimes I wake up with tingles) but nothing constant with POTS so they think it should be OK and let them know if something worsens. I have to treat the UTI before it gets worse...but I hate taking new meds. It's every 12 hours so I think I'll start it at 8am instead of 8pm tonight in case I have an issue/reaction (no one is easily contacted in the middle of the night compared to the day!). I don't think 12 hours will make or break me at this point. Am I being overly cautious? I know the Dr. won't know if I start it today or tomorrow if nothing happens, but this makes me so nervous to take at night I'd feel much better doing it in the AM.
  23. I take 20 mg three times a day! It's the one that helps the most. I tried Metoprolol (spelling?) and it kept making me throw up. Not good. Propranolol helps keep my HR in line and I don't have tremors either. I was told my dosage is very, very small. Many people take 60-80mg 3 times a day.
  24. I feel you. I don't have a choice right now and have to try to get in my work while I can. I hope and hope I get better rather than the other way around. But if it goes the opposite (please no!), I have to earn enough credits to try for SSDI. And I hope working while you are so sick at least shows one tried. But. I'm hanging in there. Just.
  25. I do have documentation but I feel that's private and only for the police to see. In fact, it even says it is to be kept in my vehicle and shown to law enforcement on request. That's fair, and I would. They are just doing their job. But it wasn't her job to be the police especially when she didn't even take a second to look at my clearly marked plates. I do have a placard for other people's cars when I am in them...but there have been thefts of those in our State recently so it's recommended you use plates for normal use. I just think I ran into a rude person at the wrong time. The worst part was the blocking and aggression. The not looking sick thing is hard to deal with, but boy, I feel it!
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