SweDys

Tank you all for your input.

If it is my sjogrens that is causing my dysautonomia, then this is something I really need to look in to. Maybe atlest it can stop my problems from getting worse.  Will talk to my cardiologist about getting so see a neurologist to sort out where my leg pain come from, if its Small Fibre Neuropathy or coz my sjogrens.

I do add alot of salt and drink alot of water but still havent started with any real exercise yet, well i do try to take shot walk everyday but 15 min is all I can do. I do have access to a pool, will look in to that but still need some more improvment before i go there.

This summer before I where Dx, I did try some betablockers after some trips to the ER, but it made my resting HR drop to 40 which was kinda scary.

Hi Pistol

I do feel better but far from okej. Beeing upright is still very hard. I would say that all my problems have improved but just a little. I have a doctors appointment in 3 weeks, hopefully I can by then see the full effect from the florinef and discuss what to do next. I'm now only on florinef.

About 7-8 years ago I started to get some problems with my feets.  They started to go numb and i got a burning pain in them. This sensation have over the years spread and now I feel this from my feets up to my thighs. I've been tested for diabetes and my B-12 lvls are fine. I will talk about this with my cardiologist, maybe smart to get this sorted before adding any more medication?

I also have Sjogrens and Crohns disease

Hi all

I have now been on Florinef one week, and i have seen some small improvments. Aside from the dysautonomia I have now less dry lips/eyes but I am now more constipated.

I have done the poor mans TTT some months ago and now after one week with florinef

Before Florinef                            HR                       BP

Recumbent                                  68                     110/70

Sitting                                         76                      98/60

Standing                                     150                    100/80*                               *This was hard to read, so think the nurse guessed

One week with Florinef               HR                       BP

Recumbent                                  55                     120/70

Sitting                                         61                     120/69

Standing                                    130                    100/85

All comments about my numbers are appreciated. Can i expect more improvments later on?

Tank you all for the kind words and support.  Yesterday was a ruff day, but the support from this community really helped.

In a turn of events my cardiologist rang me today and apologized for yesterdays call, she had now spoken to her colleagues and was now better informed. Im going to start with florinef, doing regular bloodtest to check my calium levels, and I got a new appointment to see her in 4 weeks so we can evaluate the treatment.

Even the darkest night will end and the sun will rise, as the say in Les Misserable.  Now lets hope this can be the turning point I've been looking for.

Finally I got to speak my cardiologist, and now i really dont know what to do. She had not even read the results from the TTT before calling me, but did so during the call. She asked me if i was feeling better, like hopeing my problems would resolve them self. 

After I told her I feel the same as before, she had now read the results and told me that I can't live like this, but she had no ide what to do........

I suggested to try Florinef, she dident even know what that was and that she would ask an Endocrin-doc about it and get back to me.

I had such high hopes after doing the TTT, that I was finally going to get some help. I've hoped that I would be able to celebrate Chirstmas with my family.  Now my hope and dreams are gone

Ty for your replys, it did clear up some of my questions.

What kind of treatment plan would be expected for someone with my problems?

Update

I can now see the they have changed my chart, and it now says : autonomic dysfunction in form of sympathicotonia ortostatism

Anyone know what this means?

Hi Pistol

During the TTT I experinced chest pain, palpitation, fatigue, presyncope and my hands and feet went numb. These symptoms I have every day when I stand, but I never push myself as far as the TTT did.

And yes I hope to never have to do any more TTT, it was horrible.

Yes it was really exhausting, spent most of that day in bed.

My cardiologist told me before the test that for it to be POTS my BP needs to stay the same, before and after tilting. But mine fell by 20 mm hg. 

Just hoping I can finaly get some help, this has taken way to long

Hello, I had my tilt table test done yeasterday and I'm wondering about the results. Hopeing to hear from my doctor soon, but it takes so long here in Sweden.

My baseline was HR 68 and systolic BP 100. After beeing raised to 70°, HR jumped to 140 and stayed between 140-150 the full 30 min test. My BP fell from 100 sys to 80, and stayed between 80-85 all thru the test.

All toughts about this are appreciated

Yes I also get those shakes. I get them after high stress situations, like dentist appointments etc. For me it helps to lay down and put a blanket auround me.