POTS or what, based on these heart rate figures?

[xchocoholic]

Hi sasha,

Good to hear you don't have ataxia. From what I've seen this doesn't go away easily.. Mine
returns with gluten or certain meds like Benadryl. It's embarrassing because I don't realize I'm
falling until I hit something or someone dodges me because I'm about to fall into them. Or I
just fall into them. Lol.

I never had a remission. Cool. Hope it happens for you again. Tc.. X

 

[Shell]

Sasha I hope you get a full remission!
The POTS thing is difficult. One of the things about it is that symptoms come and go. I am having a "good" day today. Pulse is staying aroun 115-120 when I'm upright.Not much in the way of the more nasty symptoms. But other days I can have my BP shooting upwards and belting down again while my pulse hits the high 140s. If a doc saw me that day, even a UK NHS doc might say there was something wrong.

The problem I see with this is I think too many of us have to wait until we are very will before a doc takes notice (and even then it isn't guarenteed) I hope you don't have to get worse and worse before someone is willing to see what's happening.
Keep an eye on things. Have a BP and pulse thingumy (ye gods I used to be nurse! Thingumy indeed!). Mine also shows irriegular heart beats which is useful.
Then try and time going back for a bad time. Sad as that is to have to say.

 

[Sasha]

Thanks, Shell - I've got one of those thingies (I don't know what they're called either!) so will keep an eye on it.

When I caught a bug last year I had very clear POTS symptoms, for the first time - felt dizzy if I sat up from lying down, had to crouch while walking around the house so as not to feel dizzy and so on. It wore off as the bug wore off. I don't know if POTS proper would be accepted as being so intermittent.

Either way, I can't see me getting treated for it without a clear diagnosis. I think I'm going to have to let this one go, which may be no bad thing if I don't generally have it and given that the treatment options aren't very attractive.

 

[ahimsa]

Hi Sasha,

I haven't had a chance to comment on this thread until now. I'll try not to ramble but here goes...

Either way, I can't see me getting treated for it without a clear diagnosis.

Do you mean that your doctor would not be willing to let you try different prescription medications without some sort of firm diagnosis?

I thought I'd mention that even without prescription medications there are ways to treat OI, whether it's NMH (Neurally Mediated Hypotension) or POTS. Patients have been helped with extra salt, potassium and water, for example. Or lifestyle changes. For example, avoiding things that trigger my symptoms (e.g., heat, standing, sitting upright too long, etc.) helps me a lot. It's not really a treatment, it's an adaptation, but it's better than nothing. Here's one list of what helps - http://www.dinet.org/what_helps.htm

Maybe I shouldn't have a diagnosis: maybe I haven't got OI.
...
I don't recognise my experience as being the same because I can be upright for longer, don't get immediate/almost immediate symptoms on being upright, don't faint or get dizzy, etc. Maybe I plain old just don't have it.

Or maybe you have a mild case? I do understand that diagnosis can be confusing.

For me, the minute I saw the list of symptoms for NMH, I realized that I matched up with almost every one of them. And then the tilt table test confirmed it. At that point I had been undiagnosed for 5 years so it was nice to have an answer of some kind.

It's just a hunch but I would focus more on your symptoms than on the specific heart rate pattern. It's hard enough for doctors to interpret the data from a controlled tilt table test (plus there are false positives and false negatives) so I can't imagine trying to do a test on yourself and having it be 100% accurate. As taniaaust1 said, moving around changes your BP and heart rate. And you can do it subconsciously. I had to be told a couple times during my first tilt table test to stop moving my feet. I was completely unaware that I was moving.

Also, my symptoms do not come on immediately on standing so don't think that is a requirement for OI. (I think this is a confusion with the more common type of OH where you stand up and immediately see "stars" and get dizzy) It takes at least a few minutes before I start getting the dizziness, nausea, increased heart rate, shortness of breath, and so on. And on the tilt table test it took 20-30 minutes before I got that very sudden drop in BP and then passed out.

You mentioned having trouble raising your arms. I get that, too. It's a common trigger. Feeling crappy after taking a shower is another common problem since it combines standing and heat. Even with my treatment I still have to sit down to shower. And I also sit down to dry off after the shower. But before treatment it was worse - I would have to lie down after a shower on most days. And then lie down again after getting dressed.

The type of OI that I have is called many different names but back in 1995, when I first got my diagnosis, it was called Vasodepressor Syncope by Dr. Rowe. It's also called Vasovagal Syncope, Neurocardiogenic Syncope, and other names. At some point some doctors studying ME/CFS patients started using the name NMH because so many of us NEVER faint (syncope=faint) during their daily acitivities. We get lots of symptoms from the BP drop (hypotension) but we have time to sit down before fainting. I have only fainted twice in my life and both times were during the tilt table test. Having the word for "faint" in the diagnosis is misleading.

I don't know what you have read so far (and I hope this is not information overload) but here are some links:

http://www.research1st.com/2011/06/19/the-outs-and-ins-of-oi/
(an overview - note the part where it says experts don't agree on terminology)

http://emedicine.medscape.com/article/902155-overview#aw2aab6b2
(From Dr. Julian Stewart - he uses the term Chronic Orthostatic Intolerance,
see http://emedicine.medscape.com/article/902155-overview#aw2aab6b3 and
scroll down for a list of symptoms)

http://www.cfids.org/about-cfids/orthostatic-intolerance.asp
(this page has links to the webinar and slides presented by Dr. Rowe)

http://www.dinet.org/index.htm
(mostly about POTS but there's some information about NMH/NCS/etc.)

I hope there is at least something useful in all this rambling!

If you have more questions feel free to ask. I'm happy to share what has worked for me but it may not work for others.

 

[Sushi]

Hi Sasha,
...The type of OI that I have is called many different names but back in 1995, when I first got my diagnosis, it was called Vasodepressor Syncope by Dr. Rowe. It's also called Vasovagal Syncope, Neurocardiogenic Syncope, and other names. At some point some doctors studying ME/CFS patients started using the name NMH because so many of us NEVER faint (syncope=faint) during their daily acitivities. We get lots of symptoms from the BP drop (hypotension) but we have time to sit down before fainting. I have only fainted twice in my life and both times were during the tilt table test. Having the word for "faint" in the diagnosis is misleading....

Hi Sasha,

My symptoms are similar to ahimsa's and yes, I tested positive by 3 criteria on a tilt table test. As ahimsa said, there are many types of OI and symptoms are quite different, have different triggers and take different lengths of time to appear. Though my BP and pulse pattern was weird in the first 20 minutes of the TTT, it didn't go totally wacky until about 25 minutes standing.

Sushi

 

[taniaaust1]

Why are you drinking so much water ? It depletes electrolytes.

Tc .. X

I drink a lot cause I have hypovolemia (low blood volume) with my POTS.. hence I can improve things some by drinking lots.. issue is of cause is drinking that much if done for too long causes issues eg my body can cope with drinking 3Litres in 3hrs but if I continue at that rate I start constantly throwing up and feeling extremely ill.. I assume cause by the 6-7 litre (48 cups) point.. my electrolites are being affected). I think I may nowdays be able to tell now when my electrolites are going bad.

For me to be able to be on my feet and stay on my feet doing things eg going to an appointment without getting ill.. I need to be drinking constantly (due to my body dont hold onto my blood volume). The Florinef dose my specialist has me on does help me some but not enough. (I drink soda water as I cant manage to drink plain water to the amount I need to drink).

 

[taniaaust1]

Hi tan,

Congrats. From what I've seen on the ataxia forum, you were lucky. Of course, they wouldn't be on a forum
if their ataxia had gone away. These people have a lot of our symptoms.

How consistent were your tests ? How many years were you positive ? Did you have a motorized cart ?

The ataxia.. when I went throu a bad patch I had very bad ataxia for several weeks (but more minor for a couple of years).

Positive Rombergs.. I'd think they would of been for several years consistantly (as every day was neurologically an issue for me). just blinking and not looking at my surroundings even for less then a second could cause me to fall. The neurogists said they'd never seen someone immediately go down on closing ones eyes during Rombergs.. the moment I closed mine, I had no balance at all so would loose balance and straight away (I hit the hospital floor and almost hurt myself as the two of them were supposed to catch me but they werent expecting me to instantly go down .. I didnt even get to sway back and forth as couldnt even slightly correct my balance right, I'd get to try once if that before hitting floor).

Im happy that all my neuro symptoms are nowdays soo good. (except some memory issues and II may be still having some kind of absent seizures.. its happened to me twice this week which affected what I was doing at the time to the degree which I think is more then just loosing concentration going on).

So "ME" ataxia and other damage.. seems not to always be permanent...

 

[Sasha]

I thought I'd mention that even without prescription medications there are ways to treat OI, whether it's NMH (Neurally Mediated Hypotension) or POTS. Patients have been helped with extra salt, potassium and water, for example. Or lifestyle changes. For example, avoiding things that trigger my symptoms (e.g., heat, standing, sitting upright too long, etc.) helps me a lot. It's not really a treatment, it's an adaptation, but it's better than nothing. Here's one list of what helps - http://www.dinet.org/what_helps.htm



Or maybe you have a mild case? I do understand that diagnosis can be confusing.

For me, the minute I saw the list of symptoms for NMH, I realized that I matched up with almost every one of them. And then the tilt table test confirmed it. At that point I had been undiagnosed for 5 years so it was nice to have an answer of some kind.

It's just a hunch but I would focus more on your symptoms than on the specific heart rate pattern. It's hard enough for doctors to interpret the data from a controlled tilt table test (plus there are false positives and false negatives) so I can't imagine trying to do a test on yourself and having it be 100% accurate. As taniaaust1 said, moving around changes your BP and heart rate. And you can do it subconsciously. I had to be told a couple times during my first tilt table test to stop moving my feet. I was completely unaware that I was moving.

Also, my symptoms do not come on immediately on standing so don't think that is a requirement for OI. (I think this is a confusion with the more common type of OH where you stand up and immediately see "stars" and get dizzy) It takes at least a few minutes before I start getting the dizziness, nausea, increased heart rate, shortness of breath, and so on. And on the tilt table test it took 20-30 minutes before I got that very sudden drop in BP and then passed out.

You mentioned having trouble raising your arms. I get that, too. It's a common trigger. Feeling crappy after taking a shower is another common problem since it combines standing and heat. Even with my treatment I still have to sit down to shower. And I also sit down to dry off after the shower. But before treatment it was worse - I would have to lie down after a shower on most days. And then lie down again after getting dressed.

The type of OI that I have is called many different names but back in 1995, when I first got my diagnosis, it was called Vasodepressor Syncope by Dr. Rowe. It's also called Vasovagal Syncope, Neurocardiogenic Syncope, and other names. At some point some doctors studying ME/CFS patients started using the name NMH because so many of us NEVER faint (syncope=faint) during their daily acitivities. We get lots of symptoms from the BP drop (hypotension) but we have time to sit down before fainting. I have only fainted twice in my life and both times were during the tilt table test. Having the word for "faint" in the diagnosis is misleading.

I don't know what you have read so far (and I hope this is not information overload) but here are some links:

http://www.research1st.com/2011/06/19/the-outs-and-ins-of-oi/
(an overview - note the part where it says experts don't agree on terminology)

http://emedicine.medscape.com/article/902155-overview#aw2aab6b2
(From Dr. Julian Stewart - he uses the term Chronic Orthostatic Intolerance,
see http://emedicine.medscape.com/article/902155-overview#aw2aab6b3 and
scroll down for a list of symptoms)

http://www.cfids.org/about-cfids/orthostatic-intolerance.asp
(this page has links to the webinar and slides presented by Dr. Rowe)

http://www.dinet.org/index.htm
(mostly about POTS but there's some information about NMH/NCS/etc.)

I hope there is at least something useful in all this rambling!

If you have more questions feel free to ask. I'm happy to share what has worked for me but it may not work for others.

Thanks, ahisma - I've tried the lifestyle changes to no effect and maybe that's it, I've got a mild case. I also have to sit down in the shower and to dry off and to lie down afterwards so I recognise that.

My doctor emailed me yesterday to say that even without a firm diagnosis of POTS from the specialist he's wondering if we should try to treat it (he's calling it delayed tachycardia). I want to hold off for a couple of months to give MAF 878 a chance to get going but if that isn't productive at least we can go down that avenue now.

Thanks for all those links - I recognise some of them but I think I should revisit them anyway!

 

[taniaaust1]

Thanks, ahisma - I've tried the lifestyle changes to no effect and maybe that's it, I've got a mild case. I also have to sit down in the shower and to dry off and to lie down afterwards so I recognise that.

On a logical level thou.. one would think that if you have it and its mild.. that lifestyle changes (more salt, more water, avoiding too much heat, sitting with legs up rather then down etc etc) would help. (I may have that wrong thou, its just what I'd logicaly would think).

If you do have POTS, your case I find a little confusing, often POTS is quite clear and one can easily know that's the answer. (I keep thinkin maybe you have another OI thing going on affecting you more possible occassional POTS).