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...

[CHRISTYDRAKE]

Are you on any medications?  I ask because my son had ringing in his ears and a metallic taste in his mouth when he was taking Topamax.  It could be a side effect from a medication.

Christy

[Kellysavedbygrace]

Just reread that comment- didn't mean to be so preachy-  pls forgive.  

[Kellysavedbygrace]

I'm so glad for LilMiss's response.  I have migraines too but not Orthostatic - so that info is really helpful.  I'd encourage you to look into the CSF leak to rule out.

I live in the Tampa Bay Area of Florida.  There is no one here that specializes in Dysautonomia.  It seems that my local docs fall into one of 3 categories:
1.  They have never heard of Dysautonomia
2.  They're familiar with it but have little or no experience treating it
3.  They have experience treating it, but view Dysautonomia as a condition that is more of a nuisance that an urgent medical priority.  (ie:  EP Cardiologist who has a majority of patients with life threatening conditions requiring surgery, etc.)

The key, I've found, is to build a team of local docs who are willing to work with me and my out of town docs.  I must be the leader in understanding my condition, symptoms, possible treatment options, etc. because I don't have a "quarterback" locally.  I have one doc in Pensacola, FL- 8.5 hour drive away who specializes in Dysautonomia and has POTS himself, Dr. Randy Thompson (see previous post).  He only deals with Dysautonomia and understands it as both a doc and Pt.  I can't say enough about him- and by the way, he does accept medicaid.  

In a few weeks I'll be traveling to Cleveland Clinic in OH 18.5 hours away-  My husband is planning to drive me.  At this point I cannot fly.  

What I wouldn't give to be in your part of the country-  from what I understand, some of the best autonomic docs are much closer to you.  I'd look at Mayo, MN, University of Toledo, Cleveland Clinic, dr. Peter Rowe in Maryland or Dr. Hoeldtke in W VA.  For all of these docs, you'll have to wait.  Be patient.  This is not a sprint, it is a marathon.

Will Medicaid pay for home health PT visits?  I have a therapist which comes to my house 2/3x a wk who has helped me with an exercise plan that won't send me tachying or BP dropping.  He also does a light manual cranial/ sacral therapy which I have found to be very helpful.  (need a PT who understands manual therapy and how it impacts the sympathetic nervous system). If not home health, you could probably get outpatient as well.

Try not to worry about the future but live in the moment- for who could add a day to his life by worrying.  And today you are not bedridden-  so make the most out of today.  (I'm saying that to myself as much or maybe more than I'm saying it to you.)  Know you are not alone.  I will be praying for you.  

I'd also encourage you to find the blessings God has for you in the midst of this storm.

[NoFluxes]

I have ringing in my ears that seriously NEVER goes away, its noticeable and actually very annoying when in a quiet room but I assumed this was just a symptom of POTS all this time. Oh yeah I did have a brain MRI done recently but nothing was diagnosed from it which was somewhat disappointing but I still have yet to have my spine checked.

I'm not exactly sure about the metallic taste thing, sometimes it seems like I cant taste anything much, I guess I never payed attention to it but I may in fact have a metallic taste.

To the caffeine question I usually avoid caffeine due to it upsetting my POTS symptoms, caffeine makes me a lot more dizzy/lightheaded but I was given some butalb acetamin caff pills the last time I went to the ER, they actually would help the headaches a bit but since my pressure is so strong the headaches wouldn't completely go away.

I did hear about CSF leaks before, but I figured since I had a brain MRI and apparently everything was fine according to the radiologist, so is it possible I could still have a CSF leak but it would show better in a spine CT?

[lilmissposey8088]

The pressure in your head sounds a lot like what I'm going through with this csf leak. Your Neuro may be on the right track by doing spinal CT. I know first hand how dibilitating an orthostatic headache can be! I can't do anything that requires me to stand up for very long at all without wanting to chop my own head off from the pain. That sounds a little dramatic but it is seriously the worst pressure I have ever felt at the base of my skull. Some questions:
Do you ever have fullness or ringing in the ears?
Do you ever get a salty or metalic taste in your mouth?
Have you tried caffeine while having the headache?

Here is a link on csf leaks and the symptoms:
Symptoms commonly include headaches, which are more severe in the upright position and are alleviated by supine or head-lowered below chest(Trendelenburg) positioning. Horizontal diplopia, change in hearing, tinnitus, blurring of vision, facial numbness, nausea, and upper limb radicular symptoms (tingling) may occur. These symptoms are nonspecific as they are commonly encountered in migraine and post-traumatic headache. Cognitive decline has also been reported (Hong et al, 2002; Pleasure et al, 1998).

Orthostatic headaches without CSF leak are rare. Leep and Mokri (2008) reported that a small number of patients with typical orthostatic headaches lack radiological confirmation of CSF leak. They speculate that in these patients, there might be either an occult leak, or an abnormally distensible dura. Postural headaches, generally on upright, may also occur in persons who are intermittently obstructing their CSF pathways such as in colloid cysts or a cyst of the septum pellucidum.
(http://www.dizziness-and-balance.com/disorders/central/csf-leak.html)

It's def worth having the neuro do the tests he wants to run and maybe they can find a leak or something like it that is causing the severe orthostatic headaches. Something that they can fix would be great.

Hope this helps some!
Amber

[NoFluxes]

The head pressure starts immediately after being upright and the longer I stay up the stronger it becomes and causes horrible headaches on top of the symptoms I already have because of POTS.

I don't exercise anymore, but I suppose doing exercises in supine position wouldn't be as bad, however back when I used to do any sort of exercise the head pressure would increase and cause the headaches again, I have been dealing with the head pressure as long as POTS though... I know being decontioned won't help anything though but I'm very limited to what I can do.

My blood pressure is alright when I'm sitting but the pulse tends to be around 70-80  but I noticed it continues to drop with time, usually when I check my blood pressure its something like 140/70 though... but anyway if I'm standing I'll have a pulse over 110 guaranteed, my symptoms are way worse when I'm still compared to moving around but either way only lying down relieves symptoms and once I get up again I feel even worse.

I saw a neurologist for the head pressure problem and he ordered me to get a spine CT and an EEG, however apparently I need my primary doctor to authorize it so I will be waiting longer. Another huge issue is going out and especially going back to these doctors is risky for me since I could pass out, I have to be wheel chaired in by my dad but the symptoms get horrible, anyway if fainting starts occurring I won't be able to go out anymore and as I said showering and going to the bathroom will become a problem.

The last thing I wanted to ask is if you guys know any good doctors who either specialize in dysautonomia or at least know enough in Illinois that I can get to, my current doctor hasn't been able to help me and its been several months... the problem with her is that she seems too busy for me always and almost ignores the fact I'm worsening. I cannot be waiting months long just for an appointment just to hear to take some more meds, anyway though I need someone who is not too busy for me and is willing to stop the illness from worsening. I'd be fine seeing a specialist in another state but they might not accept my health plan since I'm on medicaid currently.