Sarah Tee Posted January 31 Report Share Posted January 31 Just letting off some steam. My specialist keeps having discussions with me about particular medications, leading me to assume that he can prescribe them, but then, after multiple discussions, he will suddenly reveal that he cannot prescribe that medication, and act like I am weird for asking about it. For example, at the last two appointments we discussed using sleeping tablets to temporarily deal with the insomnia side effects of calcium channel blockers. I raised it two appointments ago, and we agreed it wasn’t ideal to “pile drugs on” in this way. Then I failed to tolerate another class of vasodilators. So we decided to to try calcium channel blockers again (a different one with different pharmacokinetics). This time *he* brought up the possibility of using sleeping tablets if needed, and seemed to have reconsidered it in the light of my dwindling options. So I try the new calcium channel blocker, feel better, but get insomnia after a week, and contact him to ask about sleeping tablets. ”I don’t prescribe sleeping tablets or any potentially addictive medications.” Well why didn’t you blimmin’ say so? Where did you think I was going to get them from? No GP is going to prescribe sleeping tablets to deal with side effects from a medication prescribed by a specialist, especially when the patient has something unusual such as dysautonomia. If I had known he couldn’t prescribe sleeping tablets to potentially get me over the hump of insomnia with a calcium channel blocker, I would have gone to a different medication this month. Also now my sleep pattern is disrupted and I have no way of getting back on track. This is not the first time he has done this either. He led me down the garden path about octreotide as well (luckily it turns out octreotide wouldn’t work for me, but at the time I didn’t know it and was extremely disappointed). I should have learned from this that I have to interrogate him about everything he says, I suppose. Or develop mind-reading powers! Short version: I have wasted my money, the government’s money (subsidy), a bottle of pills, and two weeks of my time because my specialist cannot communicate the most basic of information, like the fact that he can’t prescribe sleeping tablets, even though we discussed it twice. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted January 31 Author Report Share Posted January 31 Also, I just checked some of his online information and he promotes himself as being able to assess and help manage “Sleep disturbance/insomnia”. Pfft. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted January 31 Author Report Share Posted January 31 Ugh, it gets worse. I just found out that he faxed a prescription for melatonin to my pharmacy without checking with me first. I have tried melatonin previously, and it made me horribly nauseous. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted January 31 Author Report Share Posted January 31 And charged me for it! Quote Link to comment Share on other sites More sharing options...
MikeO Posted January 31 Report Share Posted January 31 Oh @Sarah Teethis all too much sounds familiar. I know it is very frustrating. Seems the few providers like this makes it that much harder to be trusting of the rest of the medical community. I went thru a bad go with the faint clinic that i was going to. I so wanted to be trusting but.....finally figured out i was just being snowballed with a bunch of "balona" Even my Cardiologist from the same medical network was put off by what the faint clinic was advertising to help with and what they are actually providing. "drink more water and get up slowly" Hahaha. I drank a cold one and have moved on. yes thinking about still riles me up. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted February 2 Author Report Share Posted February 2 @MikeO, I remember reading your troubles with the faint clinic. I could do with a beer too! My dad contacted the specialist and eventually sorted it out. Took up the whole day, mind you. I can’t continue with the new calcium channel blocker due to the sleep disruption, but am trying an ACE inhibitor instead. I have to resign myself to the fact that no matter what I do, this specialist will trip me up in new and unexpected ways every time we interact because of his terrible communication skills. All I can do is deal with it after it happens. Thee is no-one else to see anywhere nearby so I just have to put up with him! Quote Link to comment Share on other sites More sharing options...
MikeO Posted February 2 Report Share Posted February 2 26 minutes ago, Sarah Tee said: I have to resign myself to the fact that no matter what I do, this specialist will trip me up in new and unexpected ways every time we interact because of his terrible communication skills I run into this as well! we are so similar. When i ended up with a new PCP our encounters were pretty awkward to say the least. I was at the height of my issues he had no history with me so was a bit of a go to interact and understand each other. I stuck with him just because i had nothing left in me to go elsewhere. Fast forward be both are on the same paige he gets my health problems and is up to speed on dysautonomia! we have made a big dent in my care. I really hope this specialist works out for you. Keep after it. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted February 3 Author Report Share Posted February 3 @MikeO, I’m glad you are getting on well with your specialist now. I’ve started the new medication, a different class of vasodilator, so am hoping it will be a success. Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted March 19 Report Share Posted March 19 @Sarah Tee @MikeO, I can commiserate! I’m recovering from my total hip in one of the highest ranked surgical hospitals. And it shows, they are great, taking good care of me and they are all familiar with dysautonomia and POTS. And yet still they cannot conceive of my ABSOLUTE need for salt and water as MEDICINE! I’ve had to fight to get enough water. When I told staff that I must drink 8 liters a day of water and 10 grams of sodium. Everyone nods. BUT after watching my BP creep up from 120/80 to 150, 160 then 170, I asked for the IV flow rate. It’s set at 2 L per day!!! They act like I’m crazy requesting it be set to 8 L. I finally won the “battle of the water” by just constantly asking for Liters to drink. THEN they deliver all 10 grams of sodium at once at 10 PM. Good grief! Not when I needed it! I will say that they learn quickly. Once I explain they adapt! Just explained the salt need to my Peroperative management doc. NO PROBLEM she said and told the nurse “give him 1 gram hourly and HE can decide what he needs”! Gotta love her! Keep fighting the good fight! Quote Link to comment Share on other sites More sharing options...
MikeO Posted March 19 Report Share Posted March 19 @MaineDougHappy to hear you are in recovery mode. Haha i get the fluid battle with Hospital staff been here before. Good to hear they are accommodating your needs. I don't have POTS so my fluid/sodium needs are a bit different but i get the diabetic thirst after surgical procedures so i have to battle the i need more water with the nurses that are told to manage the fluid in and out of me to keep any eye on kidney functions? not sure but it is a protocol. Lol when they do give in to giving me more fluids i have to ask for two pee bottles because the diabetic peeing kicks in Hahaha. Rest up! and heal. Life is about to become one step better. Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted March 21 Report Share Posted March 21 @MikeO, Thanks Mike! It’s already better, pain and function, than before surgery! I was able to weight bear, walk with walker and steps on post op day 1. The medical and nursing staff started calling me “the Rock Star”! Home on day 2 and my biggest concern is resting and going slow. Not my strong suits, but with my wife and mother on the job I have no fear! Life’s already one step better and I can see wonderful days coming! Quote Link to comment Share on other sites More sharing options...
MikeO Posted March 22 Report Share Posted March 22 @MaineDougit's awesome that you are seeing benefits from the surgery so quickly. very positive. Sure your support team will keep you in check so you don't too ahead of yourself. it's important go slow at first and heal up. before you know it you will be back out hiking and walking the dogs. Keep us posted as to your progress! Good Job so far! Quote Link to comment Share on other sites More sharing options...
Pistol Posted March 23 Report Share Posted March 23 @MaineDoug a good friend of mine had a hip replacement in November. 6 weeks later she is back to completely normal except she is sooo much better! She feels like a young woman again! Its amazing how much more energy she has without all that pain, I am sure it will go the same for you. Just do what the PT tells you ( not more, not less ) and hopefully you can take your wife dancing soon! Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted April 5 Author Report Share Posted April 5 @MaineDoug, that’s wonderful news! Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted April 10 Report Share Posted April 10 @Sarah Tee @Pistol @MikeO Thanks guys, After 3 weeks away from home for my total hip and 5 out of the last 7 weeks, my wonderful wife and I have returned to our peaceful home in Maine! 😁 I continue to progress rapidly and am following all instructions. My hip feels great! After 10 years of feeling like I was walking on ground glass and limping on my cane I can walk normally just 3 weeks after surgery. Medicine may not be able to cure our Dysautonomia but they sure are performing Orthopedic miracles! Be well everyone. Quote Link to comment Share on other sites More sharing options...
Jyoti Posted April 10 Report Share Posted April 10 Fantastic news, Doug! I've been thinking of you and looking forward to hearing how things went.....so glad you are able to make such a happy report. Quote Link to comment Share on other sites More sharing options...
Pistol Posted April 10 Report Share Posted April 10 @MaineDoug I am so happy to hear how well you are doing. Good job! You really deserve this break and all the happy memories you will create now! Quote Link to comment Share on other sites More sharing options...
MikeO Posted April 10 Report Share Posted April 10 Happy to hear all is going well @MaineDoug. I see better days in your future. Quote Link to comment Share on other sites More sharing options...
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