Specialists, Pcps & Dr. Grubb Visit

[iheartcats]

Hello -

I've used up almost all my time off work for medical reasons - and there are six months to go in the year. I should be eligible for FMLA in October so...fingers crossed.

I was seeing two specialists who are familiar/treat POTS but have recently asked the specialist I have a good relationship with if he could handle my 'primary POTS care' and the other specialist could be used for an emergency (such as an extreme downturn, etc.). He is fine with this. He is an electrophysiologist who understands and treats patients with POTS. The other specialist is very good with POTS, but I feel I've done all I can with her at this point (tests, treatment options, etc).

I seem to be on a Midodrine dosage that helps a bit, I know I have to push myself even though I get extreme fatigue sometimes, I know I have to drink lots of water and G2 and eat salt...

So if one is doing what they can and symptoms are within a 'normal range' of what one is used to - how often do you/should you go to a specialist? My specialist said every three months was ok if I am comfortable with that - of course, if something gets worse to call - but with POTS there isn't a lot of immediate things that a visit is going to do. It's not going to make you 'better' once you are doing what you can.

This is hard for me because usually you have an illness, go to the doctor, get better. But POTS just is ongoing and I've never had to deal with something like this. It's hard to admit there's nothing the doctor can really do to 'make you any better' - you reach a plateau sometimes and hope things are GOING to get better.

He has secured me an appointment with Doctor Grubb next spring...and he'll take his input and we'll continue working on my treatment.

I also hope to do some cardiac rehab after FMLA kicks in...but again, this will just be part of treatment.

This is somewhat of a rambling post, I apologize, but I have been stressing over this (which isn't good for POTS either!). I can't afford to go to the other specialist monthly to simply discuss how I feel and have my blood pressure taken. And my electrophysiologist doesn't think that's necessary - only if I get worse. And of course any 'normal' sickness would go through my PCP.

POTS is hard for me because it's not curable. And you can't get to 100 percent. Maybe not even 80 percent. You just maintain.

[nunibenuni]

POTS is so hard. I'm happy you found a good doctor to deal with. I think once every three months sounds like a good schedule. I get how hard it is. I've had chronic health issues for more an half my life, but I agree that POTS is so hard, because there is not anything a doctor can do to make you "get better". With my other health problems I usually just need to go on antibiotics, change a couple of meds, rest, etc. It wasn't until I started getting POTS symptoms that I really felt helpless.

Hope you feel better and Dr. Grubb has some suggestions,

Hannah

[Ernie]

Hi,

I have appointments at the hospital 4 days a week. This includes different tests and 2 days of rehab. I see at least one doctor once a week and other different specialists. I have a very busy schedule to take care of my health but this is the way that I manage to improve my quality of life.

[pat57]

I'm bad, I go in when I want to, or when they refuse to renew prescriptions- til I do.

[Megan]

Ernie-what kind of rehab do you do?

Meg

[Ernie]

Hi Meg,

I am in cardiac rehab.

I do exercises for my quads, biceps, abd, add, and spinal muscles. It helps me have more strenghts in my legs when I stand. As you know I have been bedridden and in a wheelchair for 7 years so I have to rebuild my muscles. I am starting from scratch. I do everything on the floor to avoid fainting.

[Csmith3]

I just wanted to say that you sound like you are being very sensible and realistic about future consultations and outcomes. You know yourself better than Joe Public who tells you to go to the doctor every time you are ill with POTS. Make sure the decision is your own and don't feel guilty for reducing the consultations if that is the right thing to do (ie, you are not gaining any benefit from them).

I would try every 3 months for now and see how it goes - you can always change your mind. Maybe you will find even that is too often if you aren't changing medication. I found benefits in consulting less often - at these times I think about the POTS and medication less and am probably better for it.

I currently have consultations every 3 months, but for me this is frequent! Once I've stabilised my meds again, I will aim to reduce reviews to once a year, though bear in mind I have had POTS a long time.

Best wishes.

[iheartcats]

Hi Meg,

I am in cardiac rehab.

I do exercises for my quads, biceps, abd, add, and spinal muscles. It helps me have more strenghts in my legs when I stand. As you know I have been bedridden and in a wheelchair for 7 years so I have to rebuild my muscles. I am starting from scratch. I do everything on the floor to avoid fainting.

That's quite a schedule. How is the Rehab going? I hope it's helping you - starting from scratch can't be easy.

[iheartcats]

I just wanted to say that you sound like you are being very sensible and realistic about future consultations and outcomes. You know yourself better than Joe Public who tells you to go to the doctor every time you are ill with POTS. Make sure the decision is your own and don't feel guilty for reducing the consultations if that is the right thing to do (ie, you are not gaining any benefit from them).

I would try every 3 months for now and see how it goes - you can always change your mind. Maybe you will find even that is too often if you aren't changing medication. I found benefits in consulting less often - at these times I think about the POTS and medication less and am probably better for it.

I currently have consultations every 3 months, but for me this is frequent! Once I've stabilised my meds again, I will aim to reduce reviews to once a year, though bear in mind I have had POTS a long time.

Best wishes.

Thank you (and everyone). This has made me feel much better about my decision.

[Ernie]

Hi Cat Lady

The rehab is helping me a lot. My legs are getting stronger are feel more stable when I stand up. I takes a lot of work and time but it is really worth it. It will be a long process because I have to go step by step over many months.

[ajw4790]

Hi,

I don't know for your situation what would work best and is feasible. But, overall I have so many drs. I tend to see at least one every month or so. I see my PCP as needed and to help take care of everything in general and cardio. related. Then, most of my ANS stuff I see the one neurologist, and I tend to see him every 2-3 months. I also don't travel etc. to any of them, so it is easier in that regards.

I guess try to find someone as close as possible that is relatively well versed in dysautonomia or is willing to work with you and other drs. to get there. Then, see them as needed or prescribed. If it is a cardio. then you may only need to see them every 6 mnths- year, if it is a neurologist and you have a lot of neuro. symptoms and they change frequently, then appmts closer together maybe useful.

As far as cardio. what are they following you for? Do you have a neuro? What are they following you for? (Because, this may affect how often they want to see you- (ie. are you changing a lot of meds around?)

I don't know if that helps? Just my thoughts from my brainfogged lump of tissue some refer to as a brain.

[iheartcats]

Hi Cat Lady

The rehab is helping me a lot. My legs are getting stronger are feel more stable when I stand up. I takes a lot of work and time but it is really worth it. It will be a long process because I have to go step by step over many months.

I am so glad to hear it's helping you this much. I know you've been through a lot so I am glad they are able to help you. It is a good feeling to be able to do more than one has in a long time (which happened recently due to a new medication change for me)...so I hope things continue to improve for you!