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firewatcher

I'm Gonna Go Bald!!!!!!!!!

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I am tearing my hair out here! I need to find a cardiologist inside the state of Georgia to run some testing and "monitor" me since Vanderbilt doesn't do follow-up. I swear I'd get more takers if I was looking for a doc to voluntarily amputate both my legs! The cardiologist that came so highly recommended as a "problem solver" for "unusual cases" is turning out to be a milk-toast and his nurse is an idiot. WHY is it so hard to find a competent doctor who actually wants to see something other than heart attacks and high blood pressure? What do they do to earn that white coat, get a lobotomy? Or just drop their brains into a box they can't take it out of?

AAAAAAAaaaaaaaaaaaaaarrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrgh!! :P:lol:;)

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I'm sorry :P

I can't recommend mine-he just thinks I have anxiety. (Oh I hope he's right) wouldn't that just be great if he is????

I went back with the high catecholamines and he said, "Yeah you might have POTS-but you seem to be okay."

Yeah once again I hope I am so so wrong and he is right! Let's send everybody to him maybe he has healing powers!

"

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Lieze,

Not having read all your posts, I wanted to chime in that I suspect it is possible to have both POTS and anxiety at the same time. I suppose both can be treated as well. Just a thought.

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Firewatcher--I can feel your pain!!! It is soooo hard to find a doctor that wants to THINK! They all just want to do their usual daily routine. Even some doctors that are supposed to "get" POTS don't necessarily get it. All they know is what testing to do. They do a million tests, don't give you a straight answer, and then have you try something. When that doesn't help, then the helping stops. I guess what I mean is, they are in it for the testing $$$$$. If they would dig a little deeper or be willing to keep trying something then I would believe they are a "POTS specialist".

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I'm sorry, I can't help you find a cardiologist in Georgia, but I have to admit I've been considering voluntarily amputating my own legs to eliminate the blood pooling problem :P

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So true ... how sad is it that an amputation would look easier to deal with than a bad case of POTS. Does it have to be a cardiologist? I have a great internal med doctor who has been more helpful than anyone. I drive 3.5 hours to see my cardiologist a couple times a year and have a local internal med doctor order and set up all tests needed in between. That's worked well for me if you can find a different type of doctor willing to take on a challenge. Just a thought!

Brye

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Sorry you're having such a hard time with this Fire...........but if you think it's cardiologists......lol. In general only 10% of doctors today are worth going to with more than the normal things wrong. If we take more than 15 minutes of their time we're not a profitable part of their little business. When you do find a doctor that is willing to listen and dig deeper into things, hang on to them for dear life. Good luck in your search, we've all been there at one point also.

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{{{jennifer}}}

so sorry you are having a rough time at the hands of the medical profession. Horrible aspect of this stuff is hating to see doctors.

I so totally get your anger. My cardio really doesn't want to deal with me either - no structural problem, no interest.

hope something works out,

noreen

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I might be out of the ordinary but I don't go to a cardiologist.

I see a local GI doc (every 6 weeks) and a neurologist at Mayo clinic once a year to every 6 months (too far so I choose once a year).

I saw a cardio in the beginning but not for my treatment because my heart is healthy my pots is a "brain problem". I feel like a good GI doc is better because my POTS affects my whole body... not just my heart.

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I wouldn't go to a cardiologist, except that I'm having a "heart issue" with inappropriate bradycardia and palpitations and my other docs are telling me to GO to a cardiologist. I'm beginning to think that it would have been less of a hassle to go back to Vandy. (Even they said to get a local cardio!)

Tomorrow I am finally getting a haircut, so there will be less to pull out! At least I've finally found a hairdresser that will touch me.....

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Oh Jenn, i'm so sorry. I feel your pain! I cannot for the life of me find a good cardio. i traveled all the way to Lankenau to see this guy who was supposed to get it, and he didn't!!!

Is the Bystolic and Propanolol not working?? Hasn't he ordered you a cardionet monitor for your low heart rate???

Someone recommended a cardio to me and you can't get to see him unless you are referred by your family dr!!!! I don't have an HMO but they will not take someone who calls in randomly!!! I never heard of such nonsense.

Sorry you are so frustrated. I don't think there's any cardios in this area (too far for you!!!) and I'm getting scared and frustrated as well.

I hope someone on the boards can recommend someone to you.

Sorry for what you are going through.

Hugs,

Rene

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Well, I had some hair left before I found a cardiologist. (I didn't tear it all out!) I actually found two and now I feel like a weenie. The first doc knew almost nothing about POTS, but is willing to learn and is local. The second doc know a great deal more about POTS, but is an hour away and out of my hospital network. I chose the second doc. I'm just tired of having to educate my doctors. I want to just go to them and have them say "this is what is going on and why it is happening..." and have them be correct. I've gone back and forth in my head, do I go back to the first one and "educate" him (aka: be his guinea pig,) or stay with the one who already knows how to treat me and just juggle all the paperwork? My husband thinks I'm overthinking this whole thing and should stay with the guy who knows.

Anyway, we still don't really know why I have the bradycardic episodes, but we do know that the chest pain is benign. Doc #2 said that since I was going HYPER-tensive when they happened, it was not causing a lack of O2 to the heart, so that wouldn't be the pain. One thing we did figure out was that it has some weird relationship to my hydration status and serum osmolality. These episodes only happen when I'm thirsty, still medicated and have a measurably high serum osm (thick blood due to dehydration.)

I would be absolutely explainable if I were a rat.....I even brought in a journal article to prove it. I think I'll go find a piece of cheese and then go find a corner in a maze to curl up and enjoy it........ :rolleyes:

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Well, I had some hair left before I found a cardiologist. (I didn't tear it all out!) I actually found two and now I feel like a weenie. The first doc knew almost nothing about POTS, but is willing to learn and is local. The second doc know a great deal more about POTS, but is an hour away and out of my hospital network. I chose the second doc. I'm just tired of having to educate my doctors. I want to just go to them and have them say "this is what is going on and why it is happening..." and have them be correct. I've gone back and forth in my head, do I go back to the first one and "educate" him (aka: be his guinea pig,) or stay with the one who already knows how to treat me and just juggle all the paperwork? My husband thinks I'm overthinking this whole thing and should stay with the guy who knows.

Anyway, we still don't really know why I have the bradycardic episodes, but we do know that the chest pain is benign. Doc #2 said that since I was going HYPER-tensive when they happened, it was not causing a lack of O2 to the heart, so that wouldn't be the pain. One thing we did figure out was that it has some weird relationship to my hydration status and serum osmolality. These episodes only happen when I'm thirsty, still medicated and have a measurably high serum osm (thick blood due to dehydration.)

I would be absolutely explainable if I were a rat.....I even brought in a journal article to prove it. I think I'll go find a piece of cheese and then go find a corner in a maze to curl up and enjoy it........ :rolleyes:

At least the hair strands aren't compromising the finely honed sense of humor. Nicely done.

I see my cardiologist st Stanford about every 5 months; otherwise I see a doctor that specializes in CFS, FMS, chronic pain, dysautonomias. Not sure that he knows as much as I do about POTS at this point, but he's smart and open minded, and willing to experiment with meds as long as I bring studies that logically support the use.

My top-rated local endo and cardio were both useless.

Incidentally, POTS causes the manifestation of the same symptoms as anxiety, physically. Plenty of studies on that one. There are also some similarities with ADD, when one suffers from cerebral hypoperfusion. (This responds to a post above.)

Hope the new doc works for you, and keep up the comedy.

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I was having episodes that felt like bradycardia before I had the ablation.

My heart was doing one of two things. I would either go into the SVT's or it would slow way down and my pulse would get thready.

It was that extra pathway in the heart that can cause either. 80% of women are supposed to have that-the AVNRT?

I guess though it was supposed to be harmless? I always came out of it okay.

Glad to hear that your chest pain is benign.

Are you sure it isn't a result of a med you are on?

I would love to take something to settle down this tachycardia the only problem is when on a fluke I really get relaxed my resting pulse goes down to 66 and I'd hate to see how low it would go if I was on something to slow it down more.

I hope we all find some answers.

Hugs

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Glad you found a doc!

When I lived in the States I went to UAB to find a cardio who would help me.

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Firewatcher,

I also get bradycardic at times with hypertension. It's a HORRIBLE feeling. I also get bad chest pain during these episodes. It was one of these episodes that sent me to the ER last November and I ended up with elevated troponin. The cardiologist I met in the hospital ended up being a keeper, and he has an associate who knows POTS and helps him with my quirks. He ran tests and doesn't believe the chest pain is actually detrimental either, but the carvedilol he put me on really helped. The carvedilol has peripheral alpha blocking capabilities and has helped with the chest pain more than a simple beta blocker for me. I also have nitro tablets, and they actually HELP me feel better during these episodes (as long as I don't take too many and drop my BP).

Good luck, and bravo on being such a great advocate for yourself~

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So far I'm just going to my PCP for 'maintenance.' The thought of looking for a local Cardio makes me anxious, so I know how it can be.

You seem happy with who you found so far...I'm glad you kept the hair!

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Hi Thoughtful,

I have noticed that this year I have also gotten bradycardia and high bp. Did your drs seem to know why this was happening to you?

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