iheartcats

I know it's hard when you are ill to support yourself. Not just hard, either, but stressful. Are you currently working? I know you don't have a lot of time...and two months to find a place to live is a bit chaotic. I'll just throw out a few options because I know when I'm upset/shocked I can't always think clearly. 1. You have been together for years...3 is a long time. Has he been paying a lot of the bills? I believe spouses can still be awarded short-term alimony (for a set period of time) until you can really get on your feet. You are ill, your husband knows this, so maybe a judge would be fair in your case. 2. Would you consider a roommate? I know it'd take screening, but someone through word of mouth, family, friends? A couple women living in a 2-bedroom can often be less costly than 1 person living in a 1-bedroom. I have a friend in a Studio and that's affordable for her, so if you don't have pets that's an option. 3. Is there any way your parents/family can temporarily help, at least with a new deposit/first month's rent to get you going? I know family sometimes steps in if they can (I know not all families are able as life is expensive now) for an emergency. And this I'd consider an emergency! Maybe garage sales amongst aunt/uncles/siblings/friends...that could get you a deposit! 4. Do you have utilities is your name or his? If you don't have much of a credit rating, you may want to look into this now so you can start building it. Parents can co-sign too, so you may want to discuss this with your family. I know that's a 'big one' when families split up. Women often don't have a lot of their own credit. Good luck and PM me if you need to! Wishing you all the best!

I switched from years and years on a BCP to Mirena (local hormone rather than systemic in an IUD). My skin is acting up (yuck, pimples!) and I've gained some weight. My habits haven't changed (exercise or eating) so I assume it's partly because of this. I do hope our hormones 'balance out' in the first year, as someone mentioned. I didn't know that happened...hmmm. Well, hang in there. It's not the most fun thing to change BC.

This breaks my heart. It has me close to tears even imagining this. My heart goes out to you.

Propranonal is what I was on. I didnt even know that CostCo offered prescriptions without insurance coverage so thanx! Here is the link to CostCo for checking prices of your RX: http://www.costco.com/Pharmacy/frameset.as...mation&log= 100 40MG Propranonal is $7.11 for 100 pills! I believe Wal-Mart also has a similar program - affordable generics for people without RX insurance. Hang in there - people on the board are very helpful!

You are all giving me hope! I am so unhappy barely squeezing in my clothing (and I both refuse and don't have the funds to buy new ones!). Kayjay: One of the changes in the past 3 months are the Beta Blockers. I read they can make people gain, on average, about five pounds. But not 25! I wonder if our heart rates pre-Beta Blocker were causing more calories to be burned? That could be the 20 pound difference here, if so. Does anyone know about this connection? Flop: I've been trying to cut down on my Carbs. I do love my Carbs though. And I don't eat mammals and can't eat nuts (Cashew reaction once has me scared of them!). I bought some SoyNut in place of peanut butter, but need to find more protein. I think I need to get a pan I can Sautee chicken with Olive Oil. I also know I NEED to cut down those Carbs and just have an occasional treat. FutureHope: Since I've held a stable weight for 3+ years then boom, 20-25 pounds in 3 months my doctor is running thyroid tests. He's my new doctor. He doesn't have all my records yet so I have to tell him my weight was very steady (it was, I monitored it because there's a point I never wanted to go over and now have!). Mack's Mom: My doctor is saying I need to exercise, be it for weight loss, general health, or an improvement of POTS. He just feels it's important and wants me to try. To his credit, he suggested swimming because of the POTS. But before I sign up with anything I want to get back into things gradually. I've been reluctant. I'm scared. The Beta Blocker - I can't monitor my HR well (but he says many people exercise on BBs). I'm scared my POTS will get worse, but then I hear these stories where it HELPS. So I have to at least start walking and using my dumb bells and sit ups and go from there. I will chat with my Doctor Thursday but you, as well as I, know we have weird issues so it's a leap of faith to do something! Do you get exercise anaphylaxis? From what I understand, that one is VERY rare. I feel for you. I too get flushing from heat and exercising, but I'm pale and I think I always have done that. Is your flushing painful/hive like? My biggest concern, I think, is exercise induced asthma I used to get. I'm on Beta Blockers now...so hopefully that won't come back in full force. Sam76: Beans! Those are a good protein. I'll need to incorporate beans! Glad this diet is working for you. I'll report back on what my thyroid tests were and what my Doctor says about my starting exercise plan. I have to do it even though I want to throw up thinking about it! But if it works, like Mack's Mom says, I'll be reclaiming my life. I did Google Mirena and a lot of women say they have weight gain...but it's supposed to be localized hormone and shouldn't cause excessive weight gain. I hope it's not it because it works so well I don't want to take it out yet!

In the past 4 months, I've somehow gained 25 pounds and I haven't really changed my eating or activity level. Needless to say, I'm frustrated, my pants are tight and annoying, and I want to stop it before it gets out of control. What is bothersome is I really haven't changed much in my lifestyle. The three major changes I can think of are: 1. Going off Hormonal BC Pill to Mirena IUD 2. Starting a Beta Blocker (I read average weight gain for them is about 3-5 pounds) 3. Moving I guess I need to start dieting/exercising which is scary with POTS on a Beta Blocker. I still have to eat salt, I have to eat enough (if I don't eat, my symptoms worsen), I have to get down fluids, etc. And with exercising, I have to start so slow. Has anyone successfully lost weight? I can't keep creeping up. I was already about 15 pounds over what is my 'happy weight' and now it's really bad.

Dale - Sorry to hear all this. I recently went on a Beta Blocker and it probably helps me 40%, in combination with other meds probably 60%. I take Propranonal...it's generic and even without insurance it's cheap. I think CostCo has a 30-day supply for around $10. You may want to go to a health clinic in your area, show them your POTS diagnosis, explain what helped you (Beta Blocker + the other I can't spell right now) and call around for a 'cheap generic.' These meds have been on the market for decades, my former Cardio told me, so the generics are decent. Sometimes there's assistance for prescriptions too so don't be shy about calling for help...we NEED national Insurance coverage, it's so unfair, so please do what you can to help yourself. 50% better on a couple of medications is an excellent improvement, at least it was for me.

Thanks, guys. Glad to know it happens to other POTS folks. It's frustrating! Never heard of pheochromocytoma so I'll look into it!

Hmmmm. I've been having these late at night waking me up. I don't know if I'm too dehydrated, if my BB is now 'wearing off' in the middle of the night, or what. Let me know if anything works. It's an awful feeling isn't it?

I've had occasional palpatations (that yucky thump thump in your chest and the world feels kinda heavy). A couple nights this week, I've had them wake me up in the middle of the night scaring me horribly. It's no fun. Very thumpy, very stressful, and of course one gets nervous. I wonder if this could be from? Could my 2x a day BB not be enough? I've wondered if I should kick it up to 3x a day (my former EP says I have to adjust dosage within reason of what works, and he's even labeled my RX at up to 3x's a day). Maybe when I take it at 4pm it's mostly worn off by 3am and boom! Palpitations. What about dehydration? Sometimes I wake up very thirsty. Anybody else have this and what has helped? I do tend to get them much more infrequently on BBs.

Oh I can relate, and am glad you are keeping a sense of humor. Some days out and about I think I'll wee the car. :/ Glad you made it, and glad you have strong bladder muscles or it could've been more awkward.

I had to take a pulmonary function test before I went on BBs because I had asthma (mild) as a kid. Test was 'clear' and any asthma I get as an adult is exercise or allergy induced and it is rare. But I do get breathing issues on occasion and that leads to anxiety which leads to more breathing issues. It's frustrating. Also have occasional swallowing problems (which is not good for swallowing a lot of meds...I almost choked on a Liquid Advil so I really try to avoid huge pills when I can). No idea where it springs from, but it's like I forget to swallow right?

I'm an easy draw, at least...thank goodness they don't have to dig around. This was a fasting draw but I did have some G2 in the middle of the night! :X There was only one section that was really for fasting and well, what can you do.

I think overly tired people without health issues get these types of things too, at least from people I know! I had a friend dump orange juice on her cereal and she's perfectly healthy. I've known people who've doubled up a medicine on accident (like an allergy medicine). People who were cooking and used 2 tablespoons instead of teaspoons of salt (you think you'd notice that was too much!). Friends who have sworn they put keys somewhere, and voila!, they are lost. So we do get brain fog, but so do others for other reasons or are overly tired, have a flu/cold, mind wandering, etc. Try not to beat yourself up over it. Eating dog food wouldn't be the worst right? Just stay away from under the sink (I keep all my 'bad' stuff there...I don't mix cleaners with edibles just to be safe, which I think is a good idea for everyone!).

I had about 4 vials (ugh) of blood drawn today...all the labs were on one sheet so I couldn't break it up unless I went back to the doctor and that would be a pain for me so I just told them to take it! I know I had horrible symptoms after I had 14, yes 14, vials taken once. Never again! But 4 vials? I just had to take my dose of BB/Midodrine a bit early I'm feeling so bad/tachy. (Usually try to go 7 hours between doses, on bad days sometimes I can only make it around 6 hours). I ate salty foods and sugary foods + am drinking a lot (you know the point where you just don't want to drink anything else!). Anyone else notice weird things after just a few vials of blood drawn?

Symptoms everyday, it's no fun. I push myself through things and am so exhausted doing things it takes the fun away. I try to live as normally as possible, but it's hard. To actually hurt doing simple things like laundry? No one seems to understand that. It's not just fatigue, it's the dizziness, muscle pain, etc.

Since I've been getting up earlier I'm starting to take my Beta Blocker in the morning, after lunch, and after dinner (3 times a day, 20mg each = 60mg). When I was getting up later I'd take it around 11am and 6pm and be OK. But if I'm up at 7 or 8am I have to take it then, 1pm and 7pm or so to get the same 'effect.' Maybe it's getting up earlier that is a bit harder on my system? And can you grow used to a dose of a BB? I was told 40-60mg is very low, anyway, so I need to take a dose that actually helps. I just am hoping my POTS isn't getting worse. I hate having to take an additional amount of any kind of medication. Also - does anyone know how 'dangerous' it is really if you miss a morning dose? Like on the days I'm unwell and sleep in? The bottle says avoid missing a dose, blah blah blah, but us POTS folks aren't taking it as heart attack survivors. Thanks!

LOL Well that sounds like a normal POTS 'bad' morning! (maybe with a lower BP usually...but morning + dehydration + no meds yet). Isn't it funny how we have to reassure people and it's not a big deal? When I went in for a sickness, saw a different doctor, and my HR was 125 he was in disbelief and tried to send me to the ER! FW: So sad the allergy shots are misbehaving. Have you gotten enough of the shots yet to help you any?

I was told reactions can vary each time (sometimes they can get worse after exposure, too) so to be prepared many people carry an Epi just in case. I'd talk to your doctor when you go in and discuss carrying an Epi. I carry one even thought my allergist thinks there is minimal chance I'll have to use it...but that 1% chance of not breathing is not worth risking.

Good luck with your search! I just moved from Chicago to San Francisco and am pulling my hair out trying to find a Cardio! I did find a good PCP, thank God. That was a search, too, and he's not really heard of POTS but he's reading the literature and willing to HELP. He also treats some infectious disease patients so this isn't something completely off the wall for him. Hope this helps you in some way - at least finding a doctor who treats 'abnormal' issues is a start.

My EP and Allergist both said an Epi would be fine, but to call an ambulance if I ever have to use it. One Epi might not completely 'halt' that reaction but any further would have to be given while being closely monitored is pretty much what I was told. My Allergist did say to keep my BB dose as low as possible, but it's either 2 or 3 20mg of Propranonal a day which is a very small dose. Many people take 3 times that much on a regular basis, so I'm glad such a small dose works. It does seem like there is no definitive proof that a BB may CAUSE a stronger allergic reaction (thanks for telling me this, Firewatcher. I looked it up and feel better it's not a proven cause and effect). I am so much better on a BB, I'll stick with it for now. It's been 3 months and has made a huge difference in my life.

I've found a PCP who is willing to help manage my POTS (he has the letter from my former EP about my medicine, what is helping, etc). I have an appointment with the one 'big' specialist in my area from the list, but due to a miscommunication, etc al my appointment is now in November and it was originally supposed to be in August. That's a long wait...and I am more comfortable with a Cardio or EP I can see without a 4 month wait. I don't mind waiting a long while for the occasional appointment with a well-known specialist, but I wanted to find a local Cardio or EP who can deal with the everydays of POTS. It is good to know an EP isn't definitely a person to go to for POTS. That helps. I've been cold-calling Cardios and found one who's going to call me back to discuss my condition as he is somewhat familiar with it and go from there. If he agrees to take me one, I'll give it a go. If that doesn't work, I guess back to cold-calling. Some offices won't even 'check' to see if any of the Cardios have heard of/deal with POTS. They said they need my PCP to set up the referral. I try to tell them yes, he will, but I need to be referred to a Cardio who can help and isn't a waste of everyone's time. But no, they said my PCP has to set it up and he should be able to tell me who to go to for POTS (oh if life was so simple!). I've never looked into a neurologist so that's a thought, too. I'll see if my PCP knows of one with an ANS specialty when I see him in a couple weeks. I'm trying to be friendly, positive, etc. but some of the people I meet on the phones! It's horrible and frustrating and making me so upset. I know I shouldn't let it, but it's so stressful.

I'm having a hard time finding a local doctor to treat POTS. I think I've found a PCP willing to help, thankfully. I decided to call around to EPs in the area and one place told me 'any cardiologist can treat that' and it's 'definitely not electrophysiology.' I mentioned I'd been seeing an EP for YEARS, but I couldn't make an appointment because of this 'rule.' I'm so baffled now. This leaves me with my PCP and my current regime and hoping I can manage. I need to start exercising (weight gain/deconditioning) and didn't want to do this without an EPs input. But I guess I will have no choice. I really am unsure what to do. I can try a random Cardiologist but I don't see that being helpful to me or my condition.

Geez. That's horrible then. Horrible. Thanks.

Hi, Firewatcher - Glad you wrote because my appointment was rescheduled so I'm very upset. It was supposed to be moved to August, verified this, and they called today and said they couldn't see me until November. I have the 'normal' allergies from a skin test. Pollen, Dust Mites, some Molds, Ragweed, etc. I take Zyrtec and during the worst flare-ups a nose spray like Nasacort. I also take Zantac for my random hives. I had a skin test for foods, and it was clear. Even though I ate cashews and got hives before (was it the cashews, a coincidence? who knows). I still get random hives, but less frequently with the Zantac. I was late on my BB today and COULD NOT FUNCTION. I felt horrible. I suppose there is rebound tachycardia, but this was very bad. Probably 180 standing and kinda of weak. So I need my BB badly. I do have an Epi-Pen (which can be less effective), but I'm on Propranonal 20mg 2 to 3 times a day which I was told is a low dose. I really need the BB so I guess I shouldn't worry myself too much over the random hives. The Zyrtec still seems to be mostly working for the normal allergies. AT least well enough.