icesktr189 Posted December 13, 2011 Report Share Posted December 13, 2011 My cardiologist pretty much fired me (he was really sweet about it and basically told me there was nothing more he could do for me). He told me he would write a letter to my insurance to get me to Mayo. Dr. Goodman also said he would write a letter to my insurance stating he was the only specialist in my area that can help me. I am happy about that, but what more can he do for me? I have tried almost every med and nothing has been working. I know he can do more testing there, but most of it there is no meds for.... ugh not a fun day Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted December 13, 2011 Report Share Posted December 13, 2011 I'm sorry. Maybe more testing will lead to more answers? Maybe something will be uncovered that can be treated? I don't know, Dani, I share your frustration. Try to be hopeful - at least you have a next move. I'd love to go to Mayo or one of the big ones, but can't right now. I wish science would hurry up and catch up to us already! Quote Link to comment Share on other sites More sharing options...
Tzipora Posted December 13, 2011 Report Share Posted December 13, 2011 Because my diagnosis is still new I haven't had anyone give up on my POTS yet (but I did have my neurologist tell me he's sure I have other neuro issues but that they won't have the capacity to run the tests they want for another 6-9 months when their new lab is done being built) but I have had a lot of doctors basically give up on me. Most recently my gynecologist but generally it's GI doctors. I even end up in the hospital with GI issues and doctors come around and tell me there's nothing left, even used the term "end of the line"...But with that said the fact that your doctors are trying to get you to Mayo is amazing. Too many doctors like to think they know it all and wouldn't think of sending patients elsewhere! All the doctors who have given up on me never even mention sending me elsewhere. Instead I'm in the dark trying to figure out where else to go and fearing the next doctor will just give up too. So I know it's totally frustrating but it's a GOOD thing they are wanting you to go to Mayo and are trying to help make that happen! Quote Link to comment Share on other sites More sharing options...
abnel Posted December 13, 2011 Report Share Posted December 13, 2011 Is Lexapro still helping you at all Dani? If I recall it was helping initially but then your allergies got out of control. Has it been since the allergies flared up that the POTs has been worse? Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted December 13, 2011 Author Report Share Posted December 13, 2011 Is Lexapro still helping you at all Dani? If I recall it was helping initially but then your allergies got out of control. Has it been since the allergies flared up that the POTs has been worse?I was on lexapro, but my insurance stopped covering it and its way too expensive it was really helping, so it stunk to stop taking it. Allergies are still bad, but I have tried almost every allergy med and they dont really help. I know I have severe grass and hay...Thanks again for listening, it is just one of those days and the stress of christmas is crazy right now. I just want it to be Janurary already! Hope everyone is holding up Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted December 13, 2011 Author Report Share Posted December 13, 2011 Oh dont get me wrong I am super happy about Mayo, but its not a guarantee right now... the insurance agent also told me it could take up to 1 year to approve the request but I am happy that this cardio is willing to help. Its just he was my 3rd one and i keep having what if thoughts if I dont get into Mayo Quote Link to comment Share on other sites More sharing options...
janiedelite Posted December 13, 2011 Report Share Posted December 13, 2011 Hi Dani, I don't have much wisdom to give you but wanted to share my support! I'm sorry you feel at a loss for what to try next. Have you tried octreotide? I've heard that it can be really helpful for those who have low BP on standing. Alas, it may also be difficult to get your insurance to pay for it but it may be worth a try! Quote Link to comment Share on other sites More sharing options...
abnel Posted December 13, 2011 Report Share Posted December 13, 2011 That's awful the Lexapro is so expensive without insurance cover. So sorry to hear you can't access much needed treatment which makes you feel so much better. I hope you get into Mayo and your insurer covers you. That would be a good Christmas present!Yes this is a crazy time of year. I am trying to avoid all the Christmas hype this year - find it way too stressful. Haven't been to a Christmas party yet and am grateful for it! Sounds very unsociable of me, but my symptoms get worse around this time of year anyway (summer) and our weather is so unpredictable. Hope everyone else is doing okay with it all. Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted December 13, 2011 Author Report Share Posted December 13, 2011 thank you!! thankful.. I have heard of that med, but what does it do?? I am willing to try anything at this point! the lexapro is a little under 400/month! ughhh thanks again and I hopr everyone has a symptom free holiday! Quote Link to comment Share on other sites More sharing options...
janiedelite Posted December 13, 2011 Report Share Posted December 13, 2011 Octreotide is a somatostatin analogue that's FDA approved for carcinoid syndrome, other neuroendocrine tumors, and acromegaly. It causes abdominal vasoconstriction. Initially, it's common to have abdominal cramps and diarrhea until you get used to it. This was found under the "What Helps" section of dinet:"Octreotide is especially useful in preventing vasodilation in the gut, thereby reducing splanchnic pooling. Its actions help to prevent postprandial hypotension (low blood pressure after meals). Octreotide inhibits the release of a variety of gastrointestinal peptides and also may reduce postural and exercise induced hypotension (Mathias, 2003). Octreotide does not often appear to enhance supine nocturnal hypertension, however one study reports that it is a possible side effect (Hoeldtke, Bryner, Hoeldtke & Hobbs, 2007)."It's common to start on the subcutaneous doses because they only last a few hours in your system. But there is a month-long injection (Sandostatin LAR) that is useful if the short-acting really helps you. This is a very expensive medication (depending on your dose and pharmacy, it can run $1,000-$20,000/month). I'd make sure your insurance covers it before you get it prescribed. Quote Link to comment Share on other sites More sharing options...
kclynn Posted December 14, 2011 Report Share Posted December 14, 2011 thank you!!thankful.. I have heard of that med, but what does it do?? I am willing to try anything at this point!the lexapro is a little under 400/month! ughhhthanks again and I hopr everyone has a symptom free holiday! Does the company that makes Lexapro have a program to pay for it if you cant afford it? I was on Provigil at one time (another very exp med) and they had a program like that. Quote Link to comment Share on other sites More sharing options...
lissy Posted December 14, 2011 Report Share Posted December 14, 2011 Wow lexapro is a different price than where I am..I mean its expensive here also, but its $100 and I do have a suggestion, are there nearby mental health counseling in your area that have a sliding fee scale? Places like that actually provide the meds for free.Hope that helps Quote Link to comment Share on other sites More sharing options...
Katybug Posted December 14, 2011 Report Share Posted December 14, 2011 Hi Dani,I just wanted to say I am sorry you are not having a good time of it. This medical system of ours is so hard to navigate. Just want you to know I'm thinking good thoughts for you.Katie Quote Link to comment Share on other sites More sharing options...
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