Tilt table test. POTS or OI

[SweDys]

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

 

[StayAtHomeMom]

OI is a symptom of POTS. But elevated HR is not a system of OI (that I know of).

Can you see if your doctor can give you the results over the phone if it takes a long time to get in? My cardiologist called me a few days later to let me know I was right, I had POTS (I had to bring the possibility up and request they test it). He then called in a Rx and seen me a month later. 

[StayAtHomeMom]

By the way, your test sounds exhausting. I am glad you made it through in one piece 🎉

[SweDys]

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

[Pistol]

Hello @SweDys - I am glad you had the test done and "survived" in one piece. I think the TTT is one of the most sadistic medical test EVER!!!! -- Yes, it is true - for the diagnosis of POTS your HR raises without a drop in BP. But that does not mean you do not have OI ( which is a symptom of dysautonomia ). What are your symptoms with standing and did you have any symptoms during the TTT? 

[SweDys]

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.

[SweDys]

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?

[bombsh3ll]

Results sound like POTS to me. Your HR shot up >30 bpm, systolic BP dropped by 20 then stayed about 15-20mmHg lower than supine readings. Some centres make no mention of BP in their POTS criteria, basing result solely on HR change plus symptoms. Others employ stricter criteria for POTS alone, ie BP should not drop more than 20mmHg. Yours didn't drop more than this, so by either criteria the description of POTS is met. 

Sympathicotonic orthostatic hypotension is an older term used to describe an orthostatic BP drop in the presence of an overactive sympathetic response (as opposed to the more common form of orthostatic hypotension where the sympathetic nervous system is underactive and the heart rate doesn't rise). It doesn't seem to be used much now - many of the people it would have applied to are probably now diagnosed with POTS. 

I hope you get to speak to your doctor soon to clarify things, and more importantly get a treatment plan. And well done for surviving the TTT!

B x

[p8d]

It would meet the diagnosis of OI and pots at the center where I had mine done.  I was diagnosed with both.  

Pistol you made me laugh with this terribly accurate statement!  “ I think the TTT is one of the most sadistic medical test EVER!!!!”  I lasted 16 minutes and will never do another one unless absolutely necessary.  It was so awful.  Thanks for the laugh!

[SweDys]

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?

[SweDys]

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

[MomtoGiuliana]

So sorry your doctor has not been very helpful--but maybe she will do some research and come up with a plan for you.  Otherwise, I hope you can find a specialist.  Not all cardiologists are very familiar with POTS.

It can take time to recover from POTS and part of that is that it can take time to find the right treatment for you.

Many of us feel better with increased salt, fluids and with compression hose, but for many of us that is not enough to fully address symptoms.

Florinef is very commonly used. 

Here is a list of potential treatments for POTS that might be helpful to share with your doctor:

https://www.dinet.org/content/information-resources/pots/pots-what-helps-r100/

 

[StayAtHomeMom]

Beta blocker and midodrine are also common treatments. Most doctors really don't know what POTS is. I think they have a 15 minute discussion about it in med school and that's it. It really isn't that common. 

[bombsh3ll]

There are many different medications that have been used with success. If possible I would try and see an autonomic specialist, they would be better placed to treat you than a cardiologist who doesn't understand the condition. 

It is important though, if you have not already done so, to exclude alternative conditions such as Addison's disease, diabetes insipidus, phaeochromocytoma etc & for that reason seeing an endocrinologist or generalist would be a good idea. There are a number of treatable conditions that can mimic or present similarly to POTS. 

In the meantime, as well as the above lifestyle measures, one thing I found that massively transformed my quality of life for about a year was Licorice Root capsules. I think these are mentioned on the "what helps" page of Dinet. I take Swanson's brand, 2 x 450mg capsules daily. They can be bought from Amazon & various health food stores. With these, make sure you get the kind with the active ingredient glychyrriza in it. Some brands of licorice have had this removed -  these are labeled DGL- and are ineffective.

Exercise, if you can tolerate it is also beneficial in minimizing deconditioning which makes things worse for us. I use a recumbent bike. 

Best wishes, I hope you get some medical help soon. 

B x

[SweDys]

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.

[StayAtHomeMom]

5 hours ago, SweDys said:

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.

Good luck. Make sure you read up on the medication and speak to your pharmacist about it. If I remember right people on here have said it doesn't work well if you aren't intaking enough water and salt. You would have to do a search to be sure though. My memory is usually pretty bad. I have never taken it so I don't know much about it. 

[katcanny]

Hi, sorry you are having such a rough time. I have been on Florinef since I was diagnosed 2 years and 2 months ago and without it, I wouldn’t be able to function. I went from having to use a walker to a walking stick to now being able to stand on my own for a little while anyway. It does take time to do its job and I did have side effects but it was mostly weight gain from retaining fluid. You have to drink a lot of water though and I drink about 3 litres per day and the best tip I can offer is to drink a full bottle of water before you get out of bed in the morning, I have done this every morning for two years and it didn’t help at first but after a little while it made a huge difference. 

[SweDys]

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?

[Pistol]

How are your SYMPTOMS? Do you FEEL better since starting the Florinef? Your numbers do look better although I would not want the BP to be any higher.  I myself never took this med b/c I have high BP rather than low but regarding your question about improvement - over the years I have tried several meds for POTS and the ones that worked always were started on the lowest dose. I f they did not affect me negatively then we always increased them slowly until they showed the desired effect. But it looks like your BP is in a good range but the HR is still up when standing. Do you take a beta blocker in addition to the Florinef?

[SweDys]

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

[Clb75]

Neuropathy is very common in sjogrens, and autonomic dysfunction is common in sjogrens too. I agree seeing a specialist for POTS is a good idea, if you can’t find one then a cardiologist who is an electrophysiologist may be more familiar with POTS than a general cardiologist would be. 

Florinef is very helpful to a lot of people. You do have to drink a lot of water (over 1 Liter a day) and increase your salt ( 3-5 Grams of sodium or even more) for it to be effective. Even if you’re not on florinef, many people benefit from the increase in fluids and salt. There are other meds to try , unfortunately it can be a bit of a guessing game but there are some options. 

Has anyone mentioned exercise to you? A lot of specialists recommend starting with recumbent forms of exercise. A recumbent bike or floor peddler is recommended a lot because it allows you to exercise while in a seated, reclined position. The idea is to start slowly then increase your time bit by bit. If you can access a pool, swimming is also good because the force of gravity is less and it’s easier to move around without getting dizzy or triggering other symptoms. For some people exercise can help improve symptoms but you have to go slow and not over do it. 

Hopefully in time you’ll see some improvements.

[Pistol]

@SweDys - what rings a bell with the feet symptoms in addition to POTS problems is Small Fibre Neuropathy. Have you ever researched this or brought it up to your Doctor? It absolutely can cause your particular symptoms. 

[StayAtHomeMom]

Do you take anything for your tachycardia? That seems like a pretty large jump. BP looks pretty good though. 

[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.

 

[StayAtHomeMom]

On 12/23/2018 at 10:00 AM, SweDys said:

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.

 

There are lots of different kinds of beta blockers. Your cardiologist could advise you best. I would also suggest a rheumatologist or someone to treat your Sjogren's. A lot of people who have autoimmune and dysautonomia feel much better if not cured when they treat their underlying autoimmune. I am kind of hoping that is what is causing mine. At least then I will have hope for a "cure".