worththewords

My neuro told me that typically people who suffer from anxiety are not prescribed Wellbutrin because it can increase anxiety while you are adjusting to the dosage. Everyone is different though, especially those of us with POTS.

Karen, I haven't heard of Dr. Corbellini. I saw Dr. Miles in Ft.Myers before he retired and relocated. What do you think of Dr. Brodie? I saw him for a bit but felt he had too many patients and never knew who I was or why I was there. I see Dr. Sunil, an endocronologist in Bonita Springs. I consider him a lifesaver. He tackled my thyroid problems and he is from Mayo-Rochester and got me an appointment there within a week when no one could figure out what was going on with my heart! So if you are ever looking for a new endo, I highly recommend Dr. Sunil and he fully understands POTS. He even found me my cardiologist in Naples, Dr. Talano. Did your cardio refer you to Mayo-Rochester? Or are you trying to get in on your own? Hang in there! I really feel that Mayo-Rochester is worth it, especially if you have other medical problems you would like to have addressed. Alexia

Karen, Hello to another Floridian! Who do you see in Ft. Myers? I see Dr. Talano, a cardiologist in Naples who has a good understanding of POTS and has been working with me. I would highly recommend going to Mayo-Rochester. That is where I received my diagnosis. I also have some other medical issues that Mayo-Rochester was able to address as well. Going there was one of the best decisions I made. Alexia

Did he perform a TTT? You might want to ask for a referral to a neuro who has an understanding of POTS and maybe a regular cardio. If your EP cardio even knows what POTS is that is a start so maybe he can at least point you in the right direction if he isn't going to manage your care.

Kristy, I live in Naples and although I don't have an autonomic specialist I do have a cardiologist that has heard of POTS and has taken the time to educate himself. I know there is a member of DINET from Tampa but I'm not sure if she posts. Maybe she will see this and be able to give you a suggestion. I can't really recommend anyone that wouldn't require you to travel. What kind of doctor are you seeing now? Do they suspect POTS? Perhaps they can refer you to a cardio or neuro that has heard of it and can perform the TTT. With all the hospitals in the Tampa/St. Pete area there has got to be someone! Good luck to you. Alexia

I take Zyrtec, Singulair, and use Nasonex daily. You may have to do a bit of trial and error before you get something that works for you. There were certain meds like Clarinex that didn't agree with my system.

I don't have children but my fiance and I have thoroughly discussed the topic and how it relates to my health. We both agree it isn't such a great idea to put my body through a pregnancy. We've decided that when the time comes we will go the surrogacy route as Nina mentioned - my egg, his sperm, and a surrogate mother. However, we had looked into the adoption aspect and perhaps it varies state by state and depends on where you want to adopt from but in the state of FL they do inquire about the health, especially of the mother. Although I think if this is the route you wanted to take and you were capable of it, you could probably provide enough documentation to prove that you are able to care for a child's needs. I would suggest googling to see the law's within your state or if you plan on adopting outside of the country, do a search on that. One more thing.. Someone else mentioned the expense of surrogacy vs. adoption. Surrogacy is probably more expensive especially since you are going to have another person's medical bills, attorney fees, etc. However, some states have passed laws putting a cap on how much surrogacy can cost. For instance, here in Florida it is $12,000. If it is something you are interested in, I recommend checking your individal state laws.

Good luck tomorrow! Let us know how it goes.

Hey Jacquie, Showers make me very sympotomatic so shaving in them just became impossible without wanting to pass right out. I went to my local drug store and bought an electric razor. It makes it so much easier. I keep my shaving maintained and I can do it whenever I'm feeling up to it. If I recall correctly mine only cost $25-$30 and they last a long time. I have really sensitive skin and I wouldn't recommend Nair. I tried it once and would never do that again! I have a very bad reaction. Hope this helps. Alexia

I am going to see a hematologist on Monday. I saw her back in 2003 right after I was diagnosed with POTS and she diagnosed me with Iron Deficiency Anemia after a very painful bone marrow biopsy. I'm fairly certain I have it under control but blood work will tell. The reason I am going back to see her is that my cardiologist and I discussed having me test for low blood volume and the idea of Procrit. I recall trying to explain POTS to her when I was diagnosed and I think she got the overall idea of it. I'm just curious if anyone knows of any good articles showing how Procrit helps POTS patients or any easy way of explaining it to her. If I still have iron deficiency anemia I will probably get the injections. She wanted to do it back in 2003 because I literally couldn't stomach the pills. However, she wasn't sure how I would respond with my BP and HR typically being all over the place. My old cardiologist at the time didn't have a clue so that was no help. We decided to not go ahead with it at that time to not make anything worse for me. I was advised to take birth control pills to stop my period and I'm hoping that has made a difference. My current cardiologist said he would oversee everything if she thought it was necessary for injections to help me feel better. Considering I live in Florida and remain white as a sheet, something has got to be going on! Anyway, any input or ways to explain POTS and Procrit would be appreciated.

Good luck to you, Linda. I hope you find some answers soon.

Just curious, have any of your doctors explained the sleep paralysis and why you might get it? I don't get it like I used to but it's definitely a scary thing when it occurs. Everytime I've mentioned it to a doctor though they looked at me as if I had two heads. I hope you can find someone to help you!

I was on a commercial flight that belly flopped on a runway because the landing gear wouldn't come down when I was 15. I wouldn't fly for years so I understand your fear. Now I take a Klonopin (a larger dose than I normally take) about 30 minutes before boarding so I can at least sleep or be sedated enough to not care. I also remind myself how rare it would be for something like that to happen to me twice in one lifetime!

I hear you about allergies. I live in Florida and it seems like something is always blooming that I am allergic too. I'm on Zyrtec, Singulair, Nasonex, and a long course (6 weeks) of Avelox to knock out my never ending sinus infection and ear problems. Honestly, the prednisone was to help with my ears more than anything. I have tubes in my ears but still experience a lot of inflammation in my eustachian tubes. I just happened to notice it helps my ears and my POTS tremendously. I was always on a pack that tapers (not a consistent dose) and I don't think I experienced the emotional euphoria but the rest of me felt much better overall.

I knew it increased fluid volume and emotional euphoria doesn't sound like such a bad side effect compared to the side effects most meds cause! I'm just curious of the real potential harms of taking it long term. I know the longest I've ever been on it was a month for a severe sinus/ear infection. I'm seeing my allergist Friday morning, who is very familiar with dysautonomia, I want to explore this option a little more with him and my cardiologist. On another board someone mentioned taking it as a form of treatment for their POTS, just curious if anyone does here.

I have been getting sinus infections on and off since spring started. A couple times my allergist placed me on prednisone. Practically all of my POTS symptoms disappeared. I was even at my cardiologist while I was on the prednisone and told him how much better it made me feel. He agreed that prednisone could do that and warned me of having a crash when I came off of it. (Boy, did I!) While I was there though we did some experimenting, I could go from lying to sitting to standing without any changes in BP and very little changes in HR. Since then I've been really curious about taking prednisone to help with my POTS symptoms. I have heard it is not a good medication to take long term and I've heard various reasons why. However, it is the first thing that has truly made a difference!! Go figure. I felt almost completely normal, which was very odd to feel. I noticed on the 'what helps' portion of this site prednisone was listed. So I'm curious, does anyone here take it to help their POTS? I noticed this site mentions it helps patients in the acute post viral phase. I don't think my POTS was caused by a virus but regardless, it is helping! I've tried Florinef, Clonidine, Mestinon, etc. unsuccessfully and I'm allergic to beta blockers. Any thoughts or shared experiences would be appreciated!

I'm only months away from being a certified addiction counselor. I feel like I have a vast amount of knowledge of substance abuse and the physiological role that it plays on our bodies. It's ridiculous to hear a doctor come up with that idea without any substantial backing. As others have mentioned, in an indirect way, he was suggesting you were a substance user/abuser. I would have taken great offense to that assumption. Personally, I've never tried drugs and I only drank very little in high school. For the life of me I couldn't figure out why drinking made me feel so horrible at the time...now I know what it was doing to my body! I only got into this field because I saw what a mess addiction was making in the lives of people I cared about. It's sad to hear what Linda shared about medical schools teaching that POTS patients just have anxiety/depression. I have a friend in medical school who has yet to hear the term dysautonomia or POTS despite intense studying of the nervous and cardiovascular system. I'm not sure what is worse, an uneducated doctor or a misinformed doctor.

Good luck on Thursday! I'm glad they were able to refer you to someone who knows about POTS and Dr. Grubb. Let us know how it goes!

Good luck today! Let's us know how it turns out.

Thanks for sharing, Nina. I get episodes from all of the things you mentioned. I've been noticing it more since we are in the middle of summer (as if Florida wasn't hot enough!) so I guess I was beginning to question again if this is okay. Not that I'd wish it on anyone, but it is reassuring to know I'm not the only one. For the most part I've learned to live with it because the side effects of some of the meds that I have tried are worse than dealing (or learning to ignore) the tachy.

Nina and anyone else who may have this problem- How many episodes that would be considered a nuissance to you do you have per day? Like Linda, I can't take beta blockers because I have asthma. I tried calcium channel blockers but honestly didn't notice a difference worth staying on them. I've learned to just deal. I just started to wonder the other day how often other people experience episodes per day. I can get them for absolutely no reason or they are triggered by such things as being out in the heat (I live in FL). Most of my holters have shown that they are sinus tachy and nothing that can really harm me. I did have a double cardiac ablation so I don't seem to go over 160bpm.

Yes, everyone who paid yesterday or pays today for their items will have them shipped out on Monday! Thank you to everyone who contributed items and participated in the auction.

I think it stays about the same. The doctor I saw at Mayoclinic when I received my DX told me that it takes POTS patients 3 times as much energy to stand up as it takes a "normal" person because of all the changes that occur when we stand up BP drops, HR goes up, etc.

I've always noticed that my fiance's heart is beating really fast, which is why I thought it was so strange that my HR was normal for once. This led us to breaking out the blood pressure machine afterwards and realizing that my pulse and BP stay normal for awhile while his is up and swinging. I've never checked it during though. Something about a blood pressure cuff around my arm just seems like a mood killer to me..

Hi there, I talked to Michelle about this and it is noted in each auction that we would combine items where feasible to lower shipping costs. It will depend on what you purchase. For example, if you buy two large items I might not be able to combine them to ship. However, if they are smaller items I could combine them. At the end of the auction, we will make the adjustments to lower shipping costs if at all possible. Hope that helps answer your question! Take care, Alexia P.S. Thanks for spreading the word about the auction to your friends and family. I have done the same!