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...

[minimarci]

In the slight off chance that someone may have an answer to the debilitating symptoms described i would appreciate any feedback. my daughter who has pots has the exact samething and is worsening as time goes on. we are seeing a uk neurologist soon but he sounded unsure as to how he could help. i am asking for him to look at her intercranial pressure as the pressure is what is making her so sick. Thanks in advance.

[SarahFromMelbourneFL]

Please tell what you found out because I have the same exact problem now. I'm a 29 year old female and I have an echocardiogram done. They found that I have two problems with my heart. The aorta is narrowing and my mitral valve has regurgitation but is working at 60%. I have same symptoms of hard to breathe and pressure in chest when sitting upright, I almost passed out three times past two weeks, I had issues with blood volume being low so I intake more fluids and I have to wear compression leggings and socks over lower legs to prevent fainting. I have constant ringing in ears and partially deaf now in left ear. I cant lay down flat and if I do go to sleep I have to lay on my side since heart acts funny when I'm on my back.

[potslady]

I know this is an older discussion but I just found it.  Your symptoms are similar to mine and I was just diagnosed with hyperadrenergic POTS, a rare form of POTS.  Whatever you have, you need to find a doctor who knows what he/she is doing.  If you are near Toledo, Blair Grubb/Beverly Karabin are the best anywhere. If you aren't near Toledo, look at the big places like Cleveland Clinic, Mayo Clinic, etc and also check out the web site dinet.org; they post a list of doctors around the country who work with POTS patients. Whatever you do, don't give up; I would say the number one thing to do is find an expert in dysautonomia.  I hope you have already found help.  I wish you the best in your journey.  

[LivingInHope]

I've gone to sleep with a wrap around head ice pak, but I learned many years ago in nursing school icing the back of the neck is a no-no, though a cool moist washcloth is acceptable.

[lfreem02]

I hope you are getting some answers and doing better.  I saw a neurologist who is dealing with orthostatic hypotension with his wife from the patient side.  So, he understands the frustration of looking for the cause and how to deal with it.  He recommended going on a gluten free diet, taking 400 mg of magnesium a day, and trying a migraine diet to help with headaches and the OH symptoms.  Friends of mine with bad migraines also recommend putting an ice pack on the back of the neck or a bag of rice that has been put in the freezer.  Sleeping with the cold pack is supposed to help.  I am fortunate that I have only had one migraine like headache back in April, and I can't imagine dealing with it on a regular basis.  Also, I have read on several sites that alpha lipoic acid is good for helping to heal damaged nerves and to help them from being damaged further.  I am currently taking 600mg a day.  Even the Mayo Clinic site recommends it for neuropathy.

[hippychic258]

Did you ever figure out what the pressure in your head is?

[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?  

[lilmissposey8088]

Neck stiffness is a sypmtom of csf leak but also a symptom of meningitis which is a complication from a csf leak. I hope you don't have any fever as well. If you can flex your neck down and touch your chin to your chest it's usually not meningitis, but if you do have a high fever it's a medical emergency and you should go to the ER.
Before I started actively leaking from my nose, I went to the doctor thinking I had something wrong with my neck. lol. My neck was and is very stiff and I was having headaches, so i thought I had a disc slip or something. Then the next week the fluid started pooring out my nose when I bent over So I knew then the headaches and neck were a result of that instead.
Don't worry about not seeing any fluid leaking anywhere like mine does. It's actually pretty rare to have the fluid cone out of an ear or nose. Most of the time it just collect around the leaking area and gets absorbed into the tissues.
I'm glad your going to look into it! I might even give the doc a call and suggest that you might suspect this and see if they can get you in any earlier. I can cause some problems if left untreated for a long time. Mine they are really concerned because of the open pathway straight to my brain for bacteria and viruses to be able to enter, but any leak can cause nerve compression and a variety of other things.
Good luck! I hope it's as easy to fix as a couple days bed rest, increase in caffeine and fluids. :)  

[NoFluxes]

Thanks for the info about CSF leaks, this may indeed be the cause of the pressure and headaches, it fits the description perfectly especially about the symptoms, I am afraid the tests I'm going to get are gonna come back with results being normal again though, so in that case if it happens I'll tell the neurologist I believe I could have a leak and bring some info about it as well.

I understand the leaks are hard to detect so I'm willing to do the proper tests to find them, however I don't time to be waiting because both my POTS and the pressure keep on worsening and I'm afraid fainting is going to start occurring soon.

The neurologist also mentioned my neck is very stiff, is that a symptom of CSF leaks also? I do have other symptoms as well like light sensitivities and I'm always nauseous but I thought that was because my POTS, I have trouble breathing and swallowing also the longer I'm upright.

I don't really know what to do anymore because even just sitting the pressure is really strong and then I feel like I'm going to faint also, but I don't want to lay down all day because being decondtioned is bad.

[lilmissposey8088]

It is very possible to have a normal MRI of your head/brain and still have a leak. They are usually hard to detect and require a very thin slice CT and or an injectable radio-isotope into the dura via lumbar puncture and tracking it over one to two days. I got "lucky" because mine is leaking out my nose so it was very evident that I have a csf leak and they have a more general idea on where to look for it. Sometimes it takes a few different scans using different methods to locate the leak and it can be along your spinal column.
I would ask you neurologist about it. Severe orthostatic headaches are not a symptom of POTS or at least I don't remember it being. I think a headache may occur with the tachycardia and BP drop but yours sounds like more than the headache that would be expected. Please correct me if I'm wrong anyone. I'm going off of memory not looking up that last bit of info and my brain gets murky and foggy a lot these days. :)

Amber

[NoFluxes]

Oh I forgot to mention I'm only 18 years old so yeah I'm young :(

What benefits would I qualifiy for by the way? I was going to apply for disability but I feel with the records I have right now they'll probably deny me.

[NoFluxes]

Well actually I'm on something they call ALLkids and it is medicaid but I don't know if it'll cover everything, its somewhat complicated because there's certain networks and such. I don't know if the state of IL would be willing to pay so I can see a specialist in another state though...

Hmmmm I don't know if it'll cover health PT visits though but that sounds like something I need to help me exercise.

[NoFluxes]

Nope I used to be on flornief, midodrine and another one called lexapro. I can't handle side effects on meds and nothing seemed to help my symptoms anyway.

[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.