I Need More Help Than I'm Getting.. What Do I Do?

[Maisie87]

I have POTS.

I'm having to depend more and more on my Mom to do things for me. EVERYTHING- help me to the bathroom, give me sponge baths, bring me food, water etc... She CANNOT do all of this, she's at risk of losing her job because of missing too much work. Nor would I expect her to be able to.. She has a full time job 7 days a week.

I'm totally at a loss of what to do and so is she.

I need around the clock help. Does anyone else? What options are there? I feel like the only solution is some sort of inpatient care facility... seems extreme but I'd gladly take it.

Something has to change.. thoughts??

thanks guys

Maisie

[juliegee]

Maisie,

That makes me really sad that you need so much care- you are so young! I think you said that you were recently attending college. Did your autonomic issues come on suddenly? What precipitated them? Forgive my questions. I just wonder if we can help you figure out some treatment options you may not have considered before.

I guess you need to decide if you want to try to stay at home or consider moving to an inpatient facility (temporarily, I hope!) If you stay at home, you can try to have home health care aides help you with bathing, cooking, bathroom, changing linens, meds, etc. Even if someone came in just a few days a week, it would really give your Mom a break. As far as inpatient facilities, you could try a few field trips to check out what's available in your area.

You have such a great attitude about this, Maisie. It breaks my heart to see how quickly things seem to have changed for you. I just wanted you to know that you are in good company here. Many are equally disabled, but many of us manage our autonomic issues and are able to function somewhat normally. I add this to give you hope for a recovery of sorts. Lots of folks here have symptoms that wax and wane. I pray that you find a treatment plan that helps you live more independently.

Hugs-

Julie

[erikainorlando]

Yes, I too would uold suggest a home health aide. You might want to check your local community resources.

It is a shame that many times unless you have a big name illness or are "old" it is more challenging to get help. Perhaps a neighborhood teenager who wants some extra $$..

I also want to know your history. I have had months of being so ill....many times I still am but I am seeing a lot of improvement...I say this so you can have some hope. Hang in there.

Erika

[Maisie87]

Thank you both.

My history:

I've been a student at UGA since 2005.

In the spring of 2008 I took the semester off to travel in Africa where I had a severe rafting accident on the Nile. I nearly drowned and suffered a sever concussion- that was the beginning.

I felt strange and anxious for weeks following but was pretty much normal. Then, in April (4 wks after return to the states) I was tboned in car accident and got a 2nd concussion. (MRIs and CT scans came back normal) The dizziness got substantially worse after this car accident. I skipped summer school in 2008 because I was too weak/tired/POTSy though I didn't know that's what it was at the time. I had the tachycardia and pre-syncope but was told it was anxiety.

From April to October of 2008 I improved greatly. I was walking fine, a full time student, about 80% back to normal.

NEXT. February of this year, I got Mono. The dizziness reached a new level- I had to drop out of school and live at home. Since Feb I've gradually gotten worse. Went to MayoClinic in MN in Sept. and they said I've had POTS for 2 years.

Now, and for the past 4 weeks, I'm unable to walk or stand. I'm getting weaker every week.

That's the story. Seems like I've rePOTSed myself a couple times. .

Thank you for your encouraging words.

Maisie

[sue1234]

Maisie, I haven't read through your older posts, so you may have mentioned this. Have you had your cortisol levels tested? If so, have they done a CRH stimulation test on you to see if your adrenals respond to stimulation? I know you have the POTS thing going on, but with all of the stresses that have happened to you, and the fact that you don't have the "energy" or ability to do anything at all, it wouldn't hurt to have it checked on. With your head injuries, that would help them check to see if your pituitary is working. You could be spiraling into hypopituitariusm.

[futurehope]

I second what Sue1234 said. Let us know what you decide.

[Maisie87]

That's interesting. I've been reading about hypopituitariusm and so much if it makes sense. I got on the phone this morning with my cardiologist and he's going to refer the to an endocrinologist.

Thank you so much

I will let you know how it goes.

Maisie

[juliegee]

Maisie-

What an awful streak of luck you've had, two accidents (!!!) and then the mono. (Coincidentally, my husband is in Africa NOW. Hope he doesn't go rafting on the Nile.) What a frightening experience that must have been. I'm so sorry. Yes, you've been re-peatedly re-POTSied .

My son's dysautonomia struck following a severe GI virus. Mine came on after a car accident. Both of us had some signs prior, but these things definitely precipitated our severe symptoms. My son, Mack, has found great help via Johns Hopkins. He also had to drop out of school (for a year), but he is back full-time.... with a lot of effort & meds.

I have a few things for you to look into. Given your severe symptoms, especially following the mono, I wonder if you also meet the diagnostic criteria for chronic fatigue syndrome. Many folks develop this following mono (Bar-Epstein virus) & there is much overlap with POTS.

One of the suggestions that that my son's pediatrician (Dr. Peter Rowe, head of the CFS clinic at Hopkins) insists upon is Manual Therapy. It is a really weird form of physical therapy where the practitioner simply places his hands VERY lightly on your body and makes re-adjustments to bring your body back into balance. This is especially helpful following trauma. We have gotten great benefit from this. Dr. Rowe has recently focused his research on the benefits this brings.

In a book called "Spontaneous Healing" by Dr. Andrew Weil (Harvard Educated physician- excellent read/great info) he focuses the 2nd chapter on the help this type of therapy can provide. He extoles the virtues of an osteopath named Dr. Robert Fulford. You won't believe this, but we drive into Suwanee (not far from you) to see a doctor who studied directly under Dr. Fulford. His name is Richard Armond. He is an osteopath. I am CERTAIN he improve your current level of functioning. His office phone number is: (770) 614-4455. PM me to learn more about what to expect. He is a kind, grandfatherly man who seems to be sleeping as he works on you . He isn't!!! My son can actually feel his body shifting during a treatment. He is sometimes worse following treatments, BUT always improves to a higher level of functioning within a week or so. I don't know how this works. It looks like voodoo, but it really helps. It has the Harvard & Hopkins seal of approval and you are so lucky to have one of the best practitioners near you. PLEASE consider making an appt. today.

Maisie, excuse my questions but what meds are you currently taking? I can't help but think there may be something you haven't tried. I know what a bright and talented young lady you must be to have been attending UGA. I am heartbroken to see you struggling at the exact time you should be on the precipice of independence. I'm sending healing thoughts your way.

Hugs-

Julie

[Maisie87]

Julie,

Thank you for your post. You are so compassionate and empathetic.

I'm glad Mack is bad to being a full time student. That's wonderful. What is your husband doing in Africa?! It's a magical place with magical people.

I never thought about chronic fatigue syndrome- I will read into it and talk to my doctor.

I read about manual therapy and I really respong to practices of this sort... cranial sacral/chiro/rolfing/reiki/physical therapy... Your suggestion sits well with me and I am going to call tomorrow. Thank you thank you.

I also ordered Dr. Andrew Weil's book about 5 minutes ago!! haha. I've read one of his books before and learned a lot.

As far as medications, I don't respond well to most. I am currently on the SSRI lexapro, multiV, wholefood adrenal support, magnesium and on occasion. (and of course salt and fluid as much as possible). I just have a gut feeling that there is something more than POTS going on here- hormonal feels right.

In the past, I've tried florinef, mestinon, sudafed(?), klonopin, xanax... all with terrrrrrrible reactions. Licorice root made me really anxious and tachy.The only POTS med I can think of that I haven't tried is a beta blocker. But I have supine bradycardia and am almost always laying down..

I have an appointment with a cardiologist at Emory tomorrow so we will see what he says about BB. I will post again, apparently he's dealt with POTS patients before.

talk soon! here goes nothin

Maisie

[juliegee]

Hi Maisie-

So glad you ordered the book and will give Dr. Armond a whirl! What he does is so different from any other type of PT. He barely touches you, yet somehow "reads" what your body needs by finding blockages (by counting the pulses of cerebral spinal fluid in various spots) and then he "opens" the blockages by laying his hands lightly on the area to shift things. Very weird, but it really works.

You really have tried almost all of the meds most likely to help It's good to check the hormonal route with an endocrinologist. If it is your adrenal glands underproducing, Addison's- the treatment (strangely enough) is florinef. Mack & I respond well to florinef. What did it do for you? What dose did you take? I'm sure you took it with plenty of salt and water as that's the only way that it will work. At times, I used only a half a tablet or less to get a good result.

Please keep us posted on your visit to Emory. There are many of us here in GA looking for a good ANS doc. I hope you find a winner!

Julie

[Maisie87]

I just got back from my appointment at Emory with Dr. Leon.

He has dealt with ANS patients before and been involved with ANS centers around the southeast. (he's a cardiologist)

The appointment was good and bad..

I liked him because he was brutally honest- if he doesn't know an answer to something, he'll say, "I don't know" and try to find out. He told me that POTS is more of a description of a compilation of symptoms that scientist and doctors really don't know much about.. ie why it comes and goes. We all know this. He wasn't at all trivializing my condition, just explaining that the medications recommended to me aren't meant to "cure", but to alleviate symptoms. In the meantime, he promised that he and many other doctors will keep researching this mysterious malfunction of the body, lovely dysautonomia.

He is referring me to an endocrinologist to test my adrenals and pituitary. He suggested I try florinef again ( i tried it once a long time ago and didn't like the side effects, but I didn't have a doctor at the time to consult about my meds so I just stopped taking it after 2 days).

He wants to introduce medications one at a time so we know there is only one variable(i like this idea). If I'm doing well with florinef, he might add beta-blockers into the mix.

If anyone in the Atlanta area is looking for a good cardiologist, I highly recommend Dr. Leon. He listens, is honest, very bright, and lets you ask as many questions as you want!! for as long as you want!! Did I mention he listens.. .. that was refreshing to me.

So I will give florinef another shot, test my hormones, try manual therapy, biofeedback (highly recommend! google "emwave" )and in the mean time--hang in there like we all do I guess.

Someday, they will find the answers- we are the guinea pigs.

Thanks for listening*

Maisie

[sue1234]

Sounds like a good appt. to me! I'm glad you found someone you like--that is so important. I'm glad you are going to have all the possible endocrine connections addressed.

[Maisie87]

thanks sue, and thanks for recommending those tests!

[juliegee]

Yeah!!!! How wonderful you found a great doc right here in Atlanta. I will certainly keep him in mind. I'm glad you are trying florinef again. And, one med at a time is a great way to go so that you can see benefits and side effects. I hope you start with a low dose and work up as you need to. Lots of salt and and water too or it won't work. I have my fingers and toes crossed for you.

Mack used biofeedback a lot, especially prior to his DX at Hopkins. He was too sick to ride in a car or fly in a plane AND biofeedback helped him through all of that- getting to Baltimore (took a few days .) He had a laptop, with different programs that showed his HR and BP, etc. He learned how to control them to a point. It was very beneficial, esp. for the control of nausea, but it takes a tremendous amount of concentration. As soon as he broke concentration, his symptoms resumed with a vengeance.

Let us know how all of the rest goes. We are all pulling for you, Maisie.

Julie