Nearly bedridden due to POTS and need advice...

[NoFluxes]

I've had POTS since late October 2008 or so, I have been to several doctors and have tried several medications as well as exercise and diet changes (increased salt and water intake) and have continuously worsened. Lately the symptoms have gotten so bad to the point after 5-10 minutes I have extreme pressure in my head causing headaches and I feel like I'm gonna pass out, I'm also very lightheaded, and it feels as if all my energy is being drained while being upright, I also have shortness of breathe and cannot think straight always.

Nothing has been able to stop the illness from worsening and my doctor pretty much gave up on trying to treat it, she said I have to keep moving though or else its only going to become worse but I can't exercise anymore at this point, I used to exercise on a daily basis though until the symptoms worsened so severely and it was mainly the head pressure, lightheadedness and headaches that I couldn't tolerate exercising anymore.

The main point here is that I'm going to end up bedridden soon and especially once the fainting starts, I came here to ask for tips and advice, so my main question is once I'm fully bedridden and cannot be up-right without fainting how am I going to do normal things such as going to bathroom and showering? I do live with my family so they could help me with a few things but going to the bathroom and showering are going to be complicated. Another question I have is if its possible I can stay at a hospital instead of being at my home since we don't have equipment for bedridden patients?

I am seeing a neurologist tomorrow for the head pressure symptom that causes horrible headaches, I actually got an MRI done to check if I could have chiari malformation or another neurological problem causing head pressure (intercranial pressure) and dysautnomia, nothing was diagnosed from the results of the MRI by the radiologist but I need to know if threes some kind of treatment for this pressure because its probably the worst symptom and it worsens along with the others everyday.

I don't exactly have the best family so I don't have much comfort and support but anyway... because the symptoms are so horrible I am forced to lay down every 5-10 minutes, anyway if you guys can answer my questions that would be nice, thanks...

[NoFluxes]

Nope still waiting... last time it took them forever just to mail referrals, the doc is rather busy and its a horrible area where her clinic is at but I didn't even want her as my primary doctor its complicated though lol but I'm gonna switch soon.

Being upright at all is horrible for my head, I don't have a recliner but I've tried them before and its still pretty painful, although tilted is still better.

[LivingInHope]

Have you tried baby steps, like having your head of your bed at a tilt or sitting back in a recliner with your feet up?  Banana has the kind of natural sugar that should have broken down rather quickly for use by the body, so if I were in your shoes, I'd pursue the blood sugar thing.  You might even look into buying a glucometer over the counter at a drug store and test yourself at home.  I believe they sell that type of thing at the pharmacy I go to.

I don't know why the neurologist would need a primary care physician to authorize tests he/she feels you should have.  My experience with primary care doctors is at times they prefer to have a specialist to order those type of tests!  Have you gotten whatever approval is required yet?  

[NoFluxes]

I don't know if my iron levels are fine but I'd assume so for how much meat that I eat, I also take multivitamins as well but I have to check how much iron that has in it. Uh its annoying to get a hold of my doctor, but I don't think they did an iron panel from what I remember at least not recently.

The symptoms are getting really painful though and it keeps worsening... but I don't want to lay down so much but it seems I have to because the pressure/headaches. Not sure what I'm supposed to do.

Also my blood sugar was checked randomly but I didn't eat anything but a banana 2 hours before the test.

[LivingInHope]

Okay, here I see your diastolic, the number of your heart at rest, is not reacting as it normally should.  This is very pertinent type of information to get to your doctor.  

  It would be good to get several of your orthostatic number readings like this over the period of a couple of weeks (if your up to it, try some laying, rather than sitting, for ten minutes then standing a minute or two too).  Your doctor needs that fuller picture of what is happening, all the numbers.  And you need at least an internal medicine doctor to take your numbers to, not just a family practice doctor for what kind of training they bring to the table.

Your blood sugar is a concern as well.  Did they only say it was a little low or did they say they wanted to re-check it?  Was it a fasting blood sugar or a random blood sugar?  

Also, just because a lot of blood is drawn, it doesn't necessarily follow that they did an iron panel- it would not something they ordinarily would check in young man.  However, even young men can have iron deficiency in their diets, I imagine problems with iron absorption too, and if you have any source of slow bleeding (such as GI) that you may not even be aware of, over a long period, even that can affect a person.  May I suggest you call and see how you can obtain copies of your blood test results?

Do you eat a diet rich in iron?  (See PM for list of foods with iron.)

[NoFluxes]

Um about your questions I had a lot of blood withdrawn recently so I think they checked all those levels. I have many other symptoms while upright that I didn't mention like constant spine chills and a strange warmness feeling in my head but every time my temperature is checked its near normal. My blood sugar was checked recently and the number was at 67 which they said was a little low, I am stressed indeed because of my conditions and yeah I don't have a great life because I have to give up so many things due to being sick.

Well anyway I did check my blood pressure/pulse while sitting and standing again, and my blood pressure seems somewhat high but my pulse was fine.

Sitting:for at least 10 minutes:

131/78 blood pressure
82 pulse


Standing for 2 minutes:

136/91 blood pressure
84 pulse

I don't know whats causing the shortness of breathe but it usually happens as the pressure becomes stronger and I feel like I would faint if I continue to  be upright.

[LivingInHope]

If you haven't already, I do have a suggestion of cutting down to very little sugar intake, as sugary foods make my own tachycardia worse.  

Also, focusing on trying to prevent the headaches from starting with a neurologist.  I know if I already have a headaches, at times, it gets worse with standing because of the tachycardia, but the other day, my headache actually improved with standing for some reason- maybe my body liked my blood pressure better with standing, I don't know.

Also, think hopeful rather than thinking bedridden.  Do you have a recliner you could put your feet up on?  A pulse of 110 with standing is not that bad at all, even though it is a big swing from your sitting pulse.  I didn't see you list a standing blood pressure- would you give us a sitting blood pressure, then, after you stand for 1-2 minutes, take it again and let us know what is your blood pressure?  

Your blood pressure sitting is slightly high on the systolic with a fine number for your diastolic and a normal pulse rate.  Trying to take slow, relaxed breaths for about 10 minutes (not too deep, since you are light headed) might help with your diastolic if you are feeling stressed about sitting.  Your pulse while sitting does not sound like what is causing your shortness of breath.

  Stressing can also make a person not think straight.  Are you involved in any activities where you can focus on helping other people and get your mind off how you feel at all?  I know that can be hard when your head is aching, which is why if the neurologist can help with the headache issue, that would be a good thing!

Is your CBC, ferritin, and iron saturation all in normal range?  If they haven't checked your iron, please ask to get an iron panel, because iron deficiency can cause tachycardia, shortness of breath, fatigue, light-headedness, and difficulty with concentration.  How about your kidney function testing- is it in normal range?  Have they done a 24 hour urine checking your sodium level?  I read in an article how a sodium under a certain number for that test can be an indicator of hypovolemia.  Have they done any pulmonary tests for your shortness of breath?

I imagine since the neurologist noticed your stiffness of neck, along with you having headaches, he/she is checking for meningitis?