Where Do I Go From Here?

[Elfie]

Hey everyone,

I have been diagnosed with POTS for about a year and a half now, but have had it for close to four years. In august of this past year (2010) I was able to get into a local cardiologist that had some knowledge of POTS. For the most part he has been great. He is the best cardiologist for hundreds of miles. He put me on metroporol, which helped some with the heart rate and then started me exercising. We tried florinef, but I had a bad allergic reaction to it. We switched to midodrene instead and that has made a big difference in my constant dizziness and the passing out.

I still really struggle with the dizziness and breathlessness when standing or when walking, the evening chest pain, the brain fog, nausea from the time I wake up until late afternoon, and now bone-crushing fatigue. The last one has increased on the medications.

I told him all this at our last appointment, along with the fact the midodrene had made some positive gains. He told me to come back in six months unless something else changes. Just the week before he had been concerned that I might have moved into CHF.

Where do I go from here? I still can't get through a day. This is my last semester of school and to graduate with my degree I have to spend two months working at an internship this summer. I go to class and work out per docs orders, and do a little schoolwork. I'm always behind and I'm not cooking, cleaning, shopping, nada. Let alone having a social life or working. And, I feel like death warmed over all the time. Does my quality of life mean nothing?

[toddm1960]

Hi Elfie,

Bone-crushing fatigue is my favorate medical term, I use it all the time.....

I'm really sorry you're feeling so bad, but if you're concered your cardio is leaving you with an untreated heart problem.......call and ask him if he's now ruled out CHF. I can tell you dysautonomia can have some ups and some major downs, I hope it doesn't last long and that you feel better soon.

[Csmith3]

I would definitely ask for his thoughts about CHF - that's a big thing to raise and then not resolve.

Otherwise, I think you are in the territory of expectations management. If your appointment is 6 months away, the doctor may be thinking the situation is stablised as best it can be. You are hoping for something better to improve quality of life which is understandable. I don't know whether your health can be further improved, but you need to have the open conversation with the doctor about your treatment plan, prognosis and expectations so you know where you are. You can always see someone else for a second opinion if you would prefer your case to be handled differently or to try different treatments.

I haven't been on the boards much so I am not familiar with your history or likely prognosis, but given your age, things may well improve in the medium term.

I do understand how frustrating it is to come away from the doctor's and think why did that all sound so positive when I feel rubbish most of the time. I have since realised that they ask about things that are (partly) within their control to improve. If I say yes, but X,Y and Z symptoms are still present, they will say those are unfixable and appear to dismiss them. It's not that they don't care; just that they cannot do anything about them.

Hang in there and good luck with the rest of the course.

[cordellia]

hello elfie,

tossing out CHF and then not following up with you---is simply not acceptable.

please be vigilant and ask for the information and answers that you need and deserve.

i am sorry that you are struggling with so much... the search for real answers is

tiring and stressful... i am still searching for answers myself--and know first hand

how debilitating the process can be.

hoping this last semester goes well and the internship is rewarding (and manageable) --good luck!

with healthful wishes,

cordelia

[bkweavers]

I agree with Cordelia. You have to be persistent with doctors and lay it on the line. I know that's easier said than done sometimes especially when you feel so awful but if you feel the doctor is leaving you hanging, you may have to fight for yourself. I know I'm sure I've ticked off plenty of doctors along the way by constantly calling and bugging their offices but too bad. I would do or say anything to get my daughter feeling better and some doctors just don't want to put the time into patients with POTS.

I hope and pray for better days ahead for you. It is certainly difficult to go to school much less feeling awful. Do you have anyone who can help?

Brenda

[Elfie]

Thanks for listening guys!

I really don't have a ton of options as far as other doctors go. I was really lucky to get into the only doctor for 600 miles that was familiar with POTS, even though he doesn't have much experience treating it. It seems as though the problems are 1) that he is one of the best cardiologists for hundreds of miles and so he is very hard to get an appointment with, ect. and 2) that he doesn't seem to want to treat any symptoms that are not "heart problems." While on one hand I can understand this, on the other hand one of my main complaints is fatigue, which is being severely exacerbated by MY HEART MEDS. While I don't want to quit taking either of my meds (I am a complete mess without them, it is pretty nice that for the most part the floor has stopped spinning all the time) the fatigue is literally cutting what I can do in a day in half (after it was already cut in half by POTS). I had a doc at the Mayo (when I was there in the summer of 09) suggest I try a stimulant medication. My PCP, which I adore, thinks it would be much better if my heart doc monitored that med since it could cause cardiac symptoms-- and because it is to counteract the effects of my other cardiac meds. It might also possibly help with my brain fog, which is another of the three symptoms I still find debilitating.

My CHF testing that he did came back only borderline high, which apparently my beta blocker can cause. I had experienced sudden unexplained weight gain with the increase in fatigue and had 9 of the 10 markers. He said he would keep an eye on it. Obviously I am glad they weren't in true CHF ranges, but obviously my symptoms are severe enough to suspect it. So why is he leaving me hanging completely on treatment for them? OR even the suggestion to see another doc, ect?

Other than that I am not totally sure what could be done or suggested to deal with the symptoms that are still driving me up the wall. We don't have a local endocrinologist and my endocrinology studies in general have come back pretty normal, as well as gastro stuff, so the nausea and other symptoms seem to be cardio and neuro related.

We have a local nuerologist, but I am wary of her because she very much advocates lifestyle changes and natural therapies. That is good and fine, but I have consistently had a track record of not responding to food/sleep/naturopath stuff. The last time I saw her (for POTS symptoms but pre-diagnosis) she took me off my meds and put me on an elimination diet. When I didn't respond favorably to either of these she basically told me that she was unable to help me further.

[Csmith3]

Increasing fatigue with the meds is a really big compromise. I understand why you are fed up. Do you feel you have exhausted other cardiac drug combinations?

Have you tried combining your heart meds with florinef or midodrine, both of which I would expect a cardiologist would prescribe? It risks the "tired but wired" feeling, but may be preferable to where you are now.