tilt table test

[ahimsa]

Thanks all for the info. Appreciate it. Maybe florinef will be enough.

sleepy237, if you do try Florinef (fludrocortisone) here are a few tips. First, I don't think it works if you don't also increase your salt and water intake. I don't like salty food very much so I take salt tablets rather than pouring extra salt on the food or making myself eat a lot of processed food (e.g., fast food and canned food have loads of sodium). Also, after you go on Florinef your doctor should do a blood test to check your electrolytes every year. Another thing that helped me was to take a time released potassium (Florinef retains sodium at the expense of potassium). Some people get side effects from Florinef so read the warning labels and watch for those. I can't remember what they are other than migraines? I think? But I actually got fewer migraines after starting this drug so who knows?

Re: blood tests, by the time I had my first tilt table test (1995) I had already had so many blood tests that I can't remember which ones were done for what. A lot of things have probably changed since then--who knows what blood tests they would be doing today? Sorry that I can't help with that question. Best of luck to you....

 

[TinyT]

TinyT, I can't believe that any doctor would say that your test was negative when you had such an increase in heart rate. Is there some other doctor who has more experience in this field who can give you a second opinion about your tilt table test results? I know it is difficult for those of us with low energy to look for another doctor but in your case it might be worth it, especially if your current doctor has decided to not even treat you for this condition based on a negative test result. (or did I misinterpret that point?)

Even my own cardiologist, who did my tilt table test and said that it was very clearly positive (a huge and sudden drop in blood pressure, my failure on the tilt table test seems to be more in the vasovagal category) has often told me that autonomic dysfunction is not his specialty. He says that if I really want a more detailed workup I need to go to someone who is more of a specialist (e.g., he sometimes mentions Dr. Blair Grubb in Ohio). However, while a specialist might be able to tell me more details about my specific problems, I'm not convinced that the energy/expense of going to another state, and going through a bunch of more tests, is worth it. I don't think there's much chance that a specialist could prescribe a treatment regimen that would work any better than what I'm already doing. I could be wrong but that's what my decision is for now.

In case anyone is curious, what is working for me (well, mostly working...) is a combination of midodrine (ProAmatine), fludrocortisone (Florinef), time-released potassium (K-Dur), salt tablets (Bio-Salt) 5 times a day, extra water (about 3 liters/day), avoiding NMH triggers (e.g., heat, standing) and resting a lot. I sit down for everything (bathing, brushing my teeth) and rest with my feet up whenever possible. I rest with my feet up after eating (less blood in the extremeties due to splanchnic pooling). If something big is coming up I do a lot of pre-emptive resting. On the other hand, I do try to take short walks when possible, mostly to do errands, because a little bit of walking does seem help me. But it's important that these short walks never include any standing. I always walk for a few minutes and then sit down! I take a folding cane/seat with me in case there is no place to sit.

It's difficult for me to find the right balance between resting and doing stuff. But I HATE having to rest so much. So, while I'm not in a huge "push/crash" cycle like I was so many years ago, I usually end up pushing a bit more than I should.

On the other hand, my mental health is also important! I remind myself that it helps me psychologically when I accomplish something (hey, look, I actually cooked one simple dish! yay!). That feeling of accomplishment makes it worth it for me even when I have a crash after the fact.

Hi ahimsa,

Dont worry, I meant the Doctor who was supervising the tilt table test thought it was negative. She really didn't have a clue. My regular GP thinks based on what I told her that it is definately positive! When we get the results next week she is going to refer me to a neurologist in the nearest capital city (I live in a regional area) who specialises in dysautonomias. We both doubt (my GP & I) that any local specialists (cardiologists or neurologists) would know much about my condition and how to manage it. I'm hoping that a single trip to the capital city will mean better autonomic tests and some recommendations from the specialist neuro.

I have read a few articles by Dr Blair Grubb, sounds like a clever guy. Thats good that your current regime is working for you. I'm going to try fludrocortisone next week (when I see my Doc) and have re-started my beta-blocker. I do everything sitting down too! (I have a 'tooth brushing chair', a shower chair, a kitchen stool!) and try to maintain high fluid and salt intake. I've just been adding more salt to my diet and drinking home-made rehydration mix, perhaps I'll have to see about salt tablets too. I also have problems with post-prandial exacerbation of my POTS (after eating), even if I have a very small meal (eg. one piece of toast), although its been better with the beta-blocker.

I agree that standing still is horrible! I am able to run small errands but standing still is awful. I hate standing in lines/queues etc.

I too find it difficult to balance between rest and activity. With my POTS untreated, there was very little balance, as any activity (e.g. making a cup of tea, getting something to eat- standing up) exacerbated my POTS. I'm already feeling slightly better with the beta blocker and hope that the fludrocortisone works well too. I have been finding that fluid & salt intake was not enough.

I do agree that mental health is very important! I sometimes accept a crash period for a chance to be social/get out of the house (with lots of pre-emptive resting too).

Thanks for the advice/info ahimsa

 

[sleepy237]

I consider us all to be the experts and have always believed that the doctors cou ld learn so much if they listened "thoroughly". If only there were more Klimas's, KDM's. I seem to cross all of the spectrums, Dysautonomia, CFS, Fibro and I have a hard time due to lack of experts knowing which is the real culprit. POTS causes crashing fatigue, as does CFS and I have all the funky random roving pains of fibro. I know they are all overlapping disorders but I feel it is a chicken and egg situation and wonder if the autonomic nervous system breaking down led me to CFS. I know that we are all different in onset. For me I have HMS and a lifetime of stress but no viral illness until my immune system started to play up a little down the line. I have turned a corner with both medical and psych. I think they have seen that things are going a little too far in me. I find it hard to escape the fear loop probably because of my trauma. My psych is actually now working with me by request and we are trying something that my friend says sounds like matrix reimprinting. I had my first session yesterday and released a whole lot of emotion over 75 minutes. I feel thankful that she is listening to my own unique case and that she accepts im dealing with both physical and psychological/emotional. There was mention of sending me to a specialised trauma centre but because of my own personality I think I would find this more stressful and already being so weakened would be detrimental to me so I asked her to take the reigns and dig into my subconscious and it seems that I am ready to pursue that route. I think that it is really important to treat mind, body and spirit in all forms of illness for maximum effect. So many of you have faith already but my friends here at PR will probably see that is what is lacking in me, so hopefully I will progress from this level, where i can't accept my illness, i am distressed by it daily and it unearthed my whole trauma such is the power of this hellish beast of an illness. I also know that the tilt is only part of the picture. I have terrible gastrointestinal problems both upper gi and lower and I am reluctant to take domperidone. For anyone with HMS and I know Sushi has found Pilates to be helpful ( hope i can start that sometime soon ) that strengthening the core muscles even if little bits lying down is crucial for anyone with this connective tissue disorder. I was in bed for so long that everything is so weakened and unstable that it feels like i need taped to hold myself together. It is very hard work when you have multiple symptoms and different parts to treat that have all went wrong but I think that is the way forward, though it takes time and of course energy. Does anyone know of a natural gut stimulant? I missed my barium xray due to being well asleep lol and unwakable. This is such a hard journey and you all are the strongest people I have had the experience to meet although I wish you weren't suffering. Thanks guys.
Sleepy

 

[Sushi]

Does anyone know of a natural gut stimulant? I missed my barium xray due to being well asleep lol and unwakable. This is such a hard journey and you all are the strongest people I have had the experience to meet although I wish you weren't suffering. Thanks guys.
Sleepy

Hi Sleepy,

Sorry to just reply to a tiny portion of your post, but that is where my info is. I just received my test results and report from KDM, and having seen them and his treatment plan, I don't think a natural gut stimulant would be nearly enough. I didn't have many gut symptoms but he found a huge overgrowth of gut infections, no good bacteria (despite taking good probiotics for years, and a great deal of dysbiosis. He plans to kill the infections in rounds, then give targeted probiotics--beginning of each of the next 3 months an antibiotic specific to the infection, then the rest of each month a targeted probiotic.

He is finding HHV6 in some patients' guts too (through biopsy), as well as XMRV (by PCR). I'd guess most of us have significant gut problems that would be hard to address without finding out specifically what they are. And, about 80% of the immune system is in the gut....

He is also treating my immune system which had very abnormal results.

I know this is a huge problem as there are so few doctors who are going to go into things in such depth, yet taking the wrong things for your gut, could possibly make things worse.

I send you hugs,
Sushi

 

[LiveAgain]

Jstefl: Valcyte? I have POTS and have been unable to tolerate any of the usual medications, including Midodrine. After reading your post, I looked up Valcyte and it says it's an antiviral used in AIDS and CMGV. I am not getting the correlation? What was the rationale for having you try this for POTS? Glad it worked though!

Naomi

 

[jstefl]

I took the Valcyte for my viral infections, I had HHV-6, CMV, EBV and Parvo B19. I have blood test results that prove this.

These viruses can affect the working of the heart.

When you have one of these viral infections, it is impossible to know what part of your body the virus is residing in. You can't really get tissue samples from many of these places to prove they are infected.

I noted many other improvements once the viruses were under control. I can't guarantee that Valcyte would work the same for everyone, I just know that it worked for me.

John

 

[LiveAgain]

John: So the orthostatic intolerance went away after a course of Valcyte? That's amazing. How long before you saw improvement?

 

[jstefl]

I weaned myself off Midodrine while taking Valcyte, so I am sure that there was some interaction between the two. I went to the doctor today, and my BP was 115/70, so things are still good after almost 3 years.

I started reducing the Mododrine after 3 months of Valcyte.

John

 

[LiveAgain]

So do you think it's possible that a virus could be the root cause of POTS?

 

[Sushi]

So do you think it's possible that a virus could be the root cause of POTS?

My doc thinks that diastolic dysfunction (coming through a chain of causation including viruses) is the root of my autonomic problems. And it is true that they disappear on days when my other symptoms are low or gone.

Sushi

 

[jstefl]

Dr. Cheney talks a lot about diastolic dysfunction.

Your diastolic pressure, the pressure that exists between heartbeats, is what forces the blood into your heart when the valve opens. If this pressure is too low, your left ventricle won't fill properly, and your heart won't be able to pump like it should. My diastolic pressure fell to 50 at my worst. When your diastolic pressure is too low, your systolic pressure will also be low.

I went to a cardiologist, and two different electrophysiologists, and none of them had any idea that viruses could be causing the problem. If you don't have a blockage of some sort, they seem to think things are fine.

Sushi, You are fortunate to have a good doctor.

It has been a few years since I was researching this, but I remember that Peckerman and Natelson had done research in this area, and that Nora Chapman is researching the effect of enteroviruses on the heart. If you go to the HHV-6 website, www.hhv-6foundation.org they have a brief section called " HHV-6 in Myocarditis ". There are several good links there that will lead you to understand the problem.

I asked Dr. Cheney why more cardiologists didn't know about viral causes of heart problems, and he just said that it takes information a while to trickle down to the average cardiologist. Not a good situation for a person with a serious heart problem.

It is important to keep yourself properly hydrated if you are having this problem. I drank lots of Gatorade during this time. My doctor recommended a product for babies called Pedialite, I think, that is used to hydrate babies when they are sick. Dehydration will worsen the problem.

John

 

[aquariusgirl]

john, which doc put you on valcyte? I presume it wasn't cheney.

 

[jstefl]

It was not Cheney. I am not a patient of his, but I had the opportunity to chat with him at two conferences.

It was my doctor at the Mayo Clinic.

John

 

[aquariusgirl]

ok, thanks.

 

[sleepy237]

got date June 7th 1030am fingers crossed. hugs all

 

[sleepy237]

I don't know what to make of the readings i heard today. Maybe someone can help. I managed half an hour of tilt table. From a constantly dizzy person I only had dizziness after half an hour when i asked to get down. My discomfort was more weakness, sweating, nausea, and extreme thirst. I had a bp drop instantly on tilting up. Lying down flat my bp was perfect 118/80 ! I think 90/80 on tilt up then it started to go a way i wasnt expecting. As i use a home monitor its always 90, 80, sys over 55,70 anything in between but the weirdest reading i heard given out today was 98/90 :s it did fluctuate but idk in what way and idk what my heart was doing as monitor was behind table. I have no idea what to expect from Cardio but its now over to him. Glad its over it wasnt pleasant but it was necessary. Hugs all ~Sleepy

 

[Francelle]

Thanks for letting us know how your TTTest went. Will be interested in the results as per your Cardiologist!

 

[Sallysblooms]

With POTS, it is not about the bp. Some doctors want to add that to the POTS symptoms. POTS is about MANY symptoms and heart rate is the main symptom. 30 beats higher after standing 10-20 mins. Really not sure why some docs drag bp into POTS, but BP is a problem with other Dysautonomia problems.

What was your heart rate? That is the clear way to test POTS.

Do the docs know all of your symptoms and take it all into account?

Tilt table is different each day so that is always a neg. about that test. I took other tests, way too ill for the TTT. That was two years ago.

I hope you hear some news soon and they can help you feel better.

 

[sleepy237]

Sally pulse always has that rise 30+. BP idk. never seen it that close together or diastolic so high. but if the tilt differs idk how assessment works....

 

[Sallysblooms]

I see, that does fit POTS as far as the heart rate. When do you get to hear about the results from your doctor?

My bp is higher when standing.