Tired of Life From a Recliner Re: P.O.T.S.

[Lily]

Hope vitamin D helps.......

I have had significant problems with OI for a couple of years now.....in September my Vit D level was checked for the first time - it was 7. I understand that 32-100 is the normal range.......I was started on Vit D 5000 iu every other day (doc said to start slow).....8 weeks later it is up to 23....I don't feel any better yet, but I can still hope I guess.....I understand 60 to 100 is better for people like us? Anyone been told what a good level would be? I mean 32-100 is a rather large range......

I tried a beta-blocker to help OI a couple of years ago, but could not tolerate it at all. Wasn't offered Florinef - can't remember why, but it was not thought to be an option for me.

 

[gracenote]

loldershaw's avatar

loldershaw,

I have nothing to contribute to your post, but just want to say welcome and I love your avatar. Every time you post and he/she shows up, I smile. Is there a name? Is this Happy Feet?

 

[liverock]

For those finding Vitamin D helpful, what is your blood test level for Vitamin D? Do you aim to keep the blood test level at a certain #?

ty

glen

Hi Glen

Before supplementing with Vitamin D3 I had my serum levels checked and it was 27ng/ml, which is barely in the normal range.

After taking 5,000 units a day for 3 months it had gone up to 39ng/ml,
a big improvement.

Eventually I hope to get the level up to 55ng/ml which research has shown is the level which gives most protection against prostate,colon and breast cancers.

I think I need to emphasise that you need to get your levels checked regularly if you are supplementing with higher levels as we all have different rates of absorbing and increasing serum levels.

I get mine checked at www.grassrootshealth.net, which involves doing a pinprick test at home and sending the sample to a lab. The result usually takes about 2/3 weeks to come back and its cheap ($40), and accurate.

I had my first one verified for accuracy by a normal blood draw test at the doctors office as well and they were both the same.

 

[ramakentesh]

CFS casues P.O.T.S. Is that fair to say? And even without it, the disabling CFS would still be there.

Potentially but its hard to say. For me I have one illness that has been diagnosed by different doctors either as CFS or as POTS - either way Im dizzy all the time but I am also very fatigued all the time.

Ive never spoken to a CFS patient that was ok with standing for long periods at the supermarket etc. OI plays a big part in many CFS cases.

 

[BEG]

never spoken to a CFS patient that was ok with standing for long periods at the supermarket etc. OI plays a big part in many CFS cases.

ramakentesh, Thanks for posting. OI is almost universal it seems with CFS. And the dizziness is extreme. I walk around bumping into furniture, counters, anything that's in my way. I use a cane for my dizziest days.

You raise a very good point. Are CFS and P.O.T.S. related or mutually exclusive? A CFS specialist tested me, so, of course it's CFS. Remember when it was a big deal to get on that tilt table and have a positive reaction? That was almost a validation of the disease. That goes WAY back. But I read about P.O.T.S. on other sites and I really wonder because I have all the symptoms of P.O.T.S. But I didn't have it before I got CFS. I believe, therefore, that the P.O.T.S. comes from the CFS.

 

[_Kim_]

Ive never spoken to a CFS patient that was ok with standing for long periods at the supermarket etc. OI plays a big part in many CFS cases.

I am a CFS patient who doesn't have OI symptoms (thank goodness). I've got other wacky autonomic nervous system symptoms - consistently low body temperature and the inability to adjust to environmental temperature changes (too hot/too cold, never just right).

I would venture to guess that those with CFS who are bed-bound likely have OI.

 

[ramakentesh]

yeah its an interesting area. Hopefully time will tell.

 

[ramakentesh]

Any of you guys with OI found benefit in some of the conventional treatments for it - florinef, beta blockers, mestonin, etc.?? Licorice??

 

[Sushi]

Any of you guys with OI found benefit in some of the conventional treatments for it - florinef, beta blockers, mestonin, etc.?? Licorice??

My dysautonomia specialist gave me strattera to raise norepinephrine levels in the synapse--it helped tremendously. He also combined it with cymbalta--thought they worked synergistically. They were very helpful for me in getting through the worst of the really bad OI. He gave them at extremely low doses and had me titrate up to that very low dose over a month to six weeks--they were hard to get used to. I tried most of the rest, except mestonin, and those were the only ones who helped me. Course they don't help everyone, but norep is a vasoconstricter.

As soon as I got a bit better, I started looking for protocols that would actually get to the root of it rather than treating symptomatically. I slowly was able to wean off these drugs and now no longer need them.

That's my OI story!

Sushi

 

[anne]

My CFS and NMH/POTS are very closely related. When I was 18, I had this weird two-week illness where I was incredibly dizzy and exhausted. I could barely stand up. It would reoccur every once in awhile, and then it got really bad and I had terrible shortness of breath too. And then I got cognitive symptoms and a horrid crash.

I had NMH then--I failed a TTT a few years later. I started to have the dizzy spells come back in March and did a new tilt and failed it. They tried to put me on something that made my head feel like it was going to explode and gave me horrible insomnia. Now I just get this very unpleasant fuzzy feeling in my head and neck that's really impossible to describe without sounding nuts. I'd love to have a way to treat it, but I can hardly name it.

 

[ramakentesh]

For me I believe my cardinal problem is POTS - I was diagnosed with CFS but its pretty hard to determine where POTS begins and CFS begins - I mean I fit both catagories.
I have sensitivities to medications which probably moves me more into the CFS area, but dizziness and hyper POTS symptoms are my main problems.
I believe doctor Marvin Medows and Dr Julian Stewart believe that the problems in CFS are in nearly all cases related to reduced blood flow to the brain as a result of one of many abnormalities.
I doubt this is true of all cases, but there is probably a sizeable minority where this is the underlying problem. Why this is is being investigated.

 

[glenp]

Vitamin D

TY for posting the vitamine D #

I see normal ref range 25-135 and over 200 as toxic

 

[Sunday]

Very interesting this about vitamin D, I'd been thinking of upping my dosage and this is really encouraging me. Very useful to have this info.

I was interested in the ultraradian (if I got that right) rhythm thing, Jody: could you explain that a little more? I have noticed that if I can arrange my day where I do stuff, then lie down, do stuff, then lie down, I do seem to get better. But I hadn't thought about there being a specific pattern for it.

 

[Jody]

TY for posting the vitamine D #

I see normal ref range 25-135 and over 200 as toxic

Glenp,

It helps to get some numbers to work with, doesn't it.

 

[Jody]

Very interesting this about vitamin D, I'd been thinking of upping my dosage and this is really encouraging me. Very useful to have this info.

I was interested in the ultraradian (if I got that right) rhythm thing, Jody: could you explain that a little more? I have noticed that if I can arrange my day where I do stuff, then lie down, do stuff, then lie down, I do seem to get better. But I hadn't thought about there being a specific pattern for it.

Sunday,

Yes, you got it right.

The body likes to have little breaks. I think, especially for people like us, it is all the more important as we run out of energy so quickly. I think of it as being rather like my cell phone's battery. When I first got it, the thing didn't need re-charging so often. But it doesn't hold a charge as long as it used to, so it needs to be plugged in more often.

I expect each of us is going to be a bit different from everyone else. I'd just recommend trying to tune in to what works best for you. Experiment a bit. If two hours is too long to keep going and you're tiring, then take that as a sign that you should take that break. It can be 10 min., 20 min., half an hour ... I think the main thing is simply to be aware that these short breaks make sense.

The other thing I'd suggest, just going from my own experience, is to ... take more breaks than you think you should need. Let them be longer than you think you should need. If you fall asleep during one, ... good.

These resting periods, napping periods, these are all helping the healing process we need so badly. You are not doing nothing. You are regenerating. And our bodies are made in such a way, that they want and need these breaks.

 

[duendeni]

Hey. I think I may have POTS. I can't stand for long without feeling dizzy, nauseous, weak, sweaty, faint, confused and getting palpitations and black spots in front of my eyes. I also get a blue/red discolouration of my lower legs on standing or moving from supine to sitting position. My doctor diagnosed reynaud's for my blue feet but they don't get blue in response to the cold. I was wondering how you get tested for this if you live in the uk. I have mentioned it to my gp, but he didn't seem to know much about the condition and stated he wouldn't be able to get me a referral?

Many thanks

 

[anne]

That certainly sounds like POTs or NHM (neurally mediated hypotension). But I don't know how you deal with it in the UK. Here it's usually cardiologists who will deal with it. I had some improvement of symptoms drinking a lot of Gatorade, but not everyone does.

 

[BEG]

Home test for P.O.T.S.

was wondering how you get tested for this if you live in the uk. I have mentioned it to my gp, but he didn't seem to know much about the condition and stated he wouldn't be able to get me a referral?
Many thanks

I read this somewhere. My memory is not great. Get a blood pressure moniter. Check B.P. and heart rate while sitting or reclining comfortably. You want your resting heart rate. Record the numbers. Stand up, preferably where you can lean on something. Retake blood pressure and pulse. P.O.T.S. is Postural Orthostatic Tachycardia Syndrome. Tachycardia meaning fast heart rate. After standing, your heart rate should have shot up, and your B.P. should be dropping. You may have an immediate reaction or a slower reaction. If the difference between your heart rate from sitting to standing is >30 points, you have P.O.T.S. Check this over the course of several weeks and take the numbers to your doctor. Maybe then you can get a referral and get on a tilt table for the real results.

On my worst days, I have seen my heart rate go from 64 resting to 103 standing. My B.P is always in the tank. Or 73 to 105. I've seen it all. You really don't wan't to induce this because you will feel lousy for days. Therefore, I wear a heart rate moniter. You can set the high and low, and it will beep when you are out of the range. When I exceed the high range, I quickly sit down and rest. I learned this from Staci Stevens. BTW, the gap between heart rates is always larger following an exertional day.

Anyone who has better detail about the home test -- please reply.

 

[Sushi]

After standing, your heart rate should have shot up, and your B.P. should be dropping. You may have an immediate reaction or a slower reaction. If the difference between your heart rate from sitting to standing is >30 points, you have P.O.T.S. Check this over the course of several weeks and take the numbers to your doctor. Maybe then you can get a referral and get on a tilt table for the real results.

My autonomic specialist used to do this "poor man's test" in his office each visit. Just a couple of other points. You need to have been sitting for quite a while--he always did it at the end of the office visit. And, he would check the BP and pulse as fast as he could when you stood up--continuously for several minutes, as there can be a big difference between 1 minute standing and 5.

Also, the arm with the BP cuff should be at heart level--when doing this at home I would rest it on a shelf or piece of furniture. It is not necessary to actually lean on something. Also, for the 30 points bit to be accurate, you would need to stand up much longer. I am not sure of how much the heart rate needs to increase for a positive for POTS, but the BP is, I think, a drop of 30 systolic. On the tilt test my BP and heart rate oscillated up and down for about 25 minutes then tanked--ending up with 88 over 80 BP--that is when I said (stridently!), "Get me down!".

When doing the short test, a drop of 10 to 20 points systolic BP, in 2 or 3 minutes, shows that there is a problem. My BP machine has a memory so you can document your results and show them to the doc--I used to just take the machine in and let him scroll through it.

Sushi

 

[glenp]

heart rate monitor

Brown eyed girl, that is a good idea about a heart rate monitor that you can wear, I am going to look into it.

My gp sent me to a cardiologist who said he didnt know about dysautonomia, he sent me to an internist who gave me a funny look and said he never heard of it

First time I saw the cardiologist bp was high, second time it was 77/44 - he thought his machine was malfunctioning, said it couldn't be that low. I bought my own cuff monitor and stopped checking it when I checked it at 195 rate (was scared) I think a permanent type monitor will be a good idea, maybe easier to monitor myself. Do any others wear one? My bp and rate range from low to high

I find when I am very weak drinking salt water helps, but that could be dangerous for some.

I also wear travel socks (compression). I put them on with my legs raised before I get out of bed