Talked To My Gp About Pots

[lavender]

I had an appointment with my GP yesterday to talk about the possibility of POTS. it was not awful, but disapoisting. I had dropped off a couple good articles on POTS a week before, highlighting all the symptoms that apply to my illness....most every POTS symptom. He had read through it by the appointment, which is good, and seemed interested. He said he had heard of POTS before, and hadn't thought of the idea of something autonomic explaining my illness. He wants me to try florinef to see what happens. And when I asked he said i could try support hose. So he definatly didn't dicount the idea of POTS.

I guess I was dissapointed because he didn't seem interested in really actively pursueing a diagnosis. He said POTS is an interesting idea to consider, but it has so many symptoms that it's easy to fit my symptoms into it. he said I could do a TTT in Anchorage, but they would just say that I have nothing wrong with my heart and that yes my heart gets fast when I'm upright, but he didn't think it would mean much to them. He thought the doctors running the test wouldn't know anything about POTS, so I couldn't get a diagnosis from them. It frustrates me that my GP, while he listens to me, it really layed back about my illness. POTS fits my symptoms more that any other illness we've looked at over the years and I always have a big jump in my heart rate when I stand up. So I was hoping he'd say, Ok lets really really look at this and do what he can to figure out if this is the answer. I guess I have a hard time letting go of a huge longing to have a NAME for my illness.

He didn't think I could find anyone in Alaska who could give me a diagnosis of POTS of know what to do with it. The idea of going to a doctor out of state is overwelming, when I feel so sick and when I've tried that so many times over the years without help.

Thanks guys for letting me vent a bit.

How do I know how hard to push for the possibility of my illness being POTS? In my mind it fits. but I don't know.....

[Tommyhoney]

Hi Lavender, and welcome.

I don't post here very much lately, too sick, & too much going on in my life. But there is such a wealth of information here, and some very compassionate folks.

Your post got my attention, because I can relate to the isolation. I was lucky enough to have been diagnosed in a town who has a very knowledgeable Dr. who treats dysautonomia, I have since moved to "nowheresville" and have to rely on a group of dr's who really don't know what to do, all they can do is treat symptoms of their specialty. I'm trying to go back to see the autonomic specialist every six months, but travel is definitely an issue as you have said. If you can even get your GP to do a "poor mans" TTT, it's a good starting point, and then maybe a cardio? I just wanted to say hi, and hope that you can forgo the hopelessnes that I feel. Good luck in your search, and hope you get some answers & relief very soon.

Tommy

[janiedelite]

Hi Lavender,

I'm so sorry! I think if your doctor had to live in your body for a day, he'd go to the moon to get answers and treatment. My neurologist believed my symptoms but had no options locally for autonomic diagnosis and specialists. I guess it's up to you as to how hard you push for a diagnosis. Going to Mayo was helpful for me because it provided more concrete test results proving my dysautonomia, which gave my hubby and I consolation to finally find someone who understood my illness and who we know we can go back to if my symptoms get worse. The diagnosis also makes it easier to get my long-term disability payments.

You've struggled with dysautonomia for most of your life, from what I can remember. You've dealt with it for so long. I know it would probably be hard financially and physically to travel. I think Vanderbilt has research programs you can be involved in and get free autonomic testing, though. When we went to Mayo, I was staying in bed most of the day because of the severity of my symptoms. I did have a hard time travelling and got sicker shortly after arriving in Minnesota, but it might have actually been a good things because the testing showed me at my worst. I didn't get any miracle cure from going, but I have a better quality of life after implementing their suggestions of compression, salt, etc.

I'm so sorry because I know how frustrating it is to leave a doctor's appointment and feel that they didn't really understand what you're going through. Travelling to see a specialist can be helpful, but there certainly aren't any miracle cures out there. I hope you can find peace either way. Sending prayers for encouragement!

Take care, Janie

[Rachel]

Hi Lavender,

I'm sorry the appointment with your GP was so disappointing.

I find it interesting that he said you "could do a TTT in Anchorage, but they would just say that I have nothing wrong with my heart and that yes my heart gets fast when I'm upright, but he didn't think it would mean much to them."

Does he realize that POTS is diagnosed based on a hr increase of 30bpm or more upon standing? POTS doesn't mean that you have a problem with your heart. I already had a POTS diagnosis when I moved to Alaska, so I never had a ttt there. I have heard of others who have been diagnosed via a ttt in Anchorage, though. So maybe the techs/cardios/whoever does the test at Providence knows what to look for.

Have you done a poor man's tilt? This would be a very good indicator of whether or not you have POTS. To do a poor man's tilt, you lie down quietly for 10 minutes, and then take your hr and bp. (It is easiest if you have someone to help you and write the results down). Then stand and take your hr and bp after 1, 5, and 10 minutes of standing still. Vanderbilt says this is best done first thing in the morning. If your hr goes up 30bpm or more, then you very likely have POTS. If your hr does increase 30bpm or more, I would push hard for a diagnosis and treatment.

I can give you the name of my neurologist in Anchorage if you are interested. She hasn't had a lot of POTS patients, but she has had a few. Perhaps she could help you to get a proper diagnosis. She isn't Dr. Grubb or Mayo, but she does know the basics of treating POTS. She was also open to trying meds and tests I requested. If I were to ever go back to Alaska, I would definitely consider going to her again as my local neuro.

Rachel

[goldicedance]

What a shame, Lavender.

I ask: has your doctor ruled out other conditions that can cause symptoms like you are experiencing. POTS is not a disease in itself. It is a syndrome - a complex of many symptoms.

Have you tried the basic medications used to treat POTS symptoms - beta blockers, florinef, midodrine, SSRIs, mestinon and the list goes on?

Has your doctor ruled out: thyroid, pituitary gland, adrenal problems? Lyme...other things?

Why not ask your doctor to treat you as if you had POTS to see if you respond? As Rachel said, do the poor man's TTT. Many doctors and their assistants do not have the time/patience/interest to do true orthostatic vitals. Perhaps if you came to the doctor with a journal of your orthostatic vitals, you might make some progress.

Otherwise, I would find a doctor who takes an interest. Back in 1993 very little was published about POTS. My internist was like a lion in pursuing various possibililities. Come 1996 she discovered Dr. Lowe's article.

I have found it takes a doctor with interest and patience (not patients) to act on your behalf.

Better luck to you as you continue your road to hopefully feeling better.

Lois

[Csmith3]

Lavender

I'm sorry you had a disappointing appointment. This hit a raw nerve with me as I have had some poor GPs who fobbed me off and held up my diagnosis and treatment. I regret being so passive in the process of managing my health.

My view is that if that's the best he can come up with, it's even more important you get a referral to someone who knows what they are talking about. I realise POTS is a very specialist subject for a GP, but what I don't understand is why they don't just admit this and refer on.

I don't know exactly how your health system works, but I would give him one more chance to come up with something or put him on the spot to refer or come up with a better plan.

Before your next appointment, could you email the hospital to ask if they have any expertise to diagnose and treat POTS? If they say no, you could ask their advice on the next nearest place to go.

Good luck. You deserve better than this.

[lavender]

Thanks you guys so much for your encouragement and understanding. I?ve been on the verge of tears today feeling frustrated. Its probably mostly cuz I?m so drained physically from my appointment yesterday. It?s nice to be able to talk through things and know that maybe I?m not crazy to not feel frustrated.

Thankful, you said, ?I think if your doctor had to live in your body for a day, he'd go to the moon to get answers and treatment.? One thing I realize when I talk to my doctors is how poorly they have a accurate picture of my illness. I try to explain things, but there is so many symptoms and it?s been going on for so long that I just cant explain it all. How do you describe the depth of the awful fatigue, or pain that makes no sense? Some times I tell them things and I feel like they finally get it a little better, and then the next time I see them, they act like what I said last time was news to them.

I thought about trying to do a poor man TTT with my GP. I have done some on my own with a blood pressure cuff here at home. I took them into him. They very clearly show a 30 (at minimum) increase of ht when I stand up for very long. And my standing hr is always over 110. He didn?t have much of a reaction to it, so I don?t know if it would be very helpful to have him get the numbers himself. Know what I mean. I got the feeling that he wasn?t comfortable being the one to give me a diagnosis.

Are there other things that could cause my HR and BP to steadily climb when I stand up? I feel pretty confident that we?ve done a good job of ruling out thyroid, pituitary gland, or adrenal problems? I?ve been tested for Lyme a number of times?and we don?t have ticks in Alaska. I know dehydration is not a problem?I drink tons of water, cuz it helps me some.

I?ve never tried any medication used for POTS, other than propranalol cuz my BP goes up when I stand. It brought my BP down a bit but not my HR very much and it didn?t change my symptoms. Usually doctors put me on vasodilators because I have bad raynauds and pernio in my hands and feet. These drugs don?t help me and make me feel SO much sicker?..Something that?s true to POTS.

What is Vanderbilt?

Thanks guys for your help!