Fighting/ Looking for treatment

[AJVDK]

I am not sure what to due anymore. I am ready to give up on finding a doctor or a treatment that works. I am begain to think that I am just losing it. I can't beleive how dumb some doctors, are and how many of them no nothing about POTS. I am just ready to lose it! Sorry I am venting I just don't know what to due.

Well as alot of you know I am having a really hard time finding a doctor. My family doctor is has taken over my care for now, but he admitts he doesn't know alot just want we has read and information he has been looking at. I saw him again on friday, as things are going down hill fast. on Thusday, it got so bad, my son who age of 4 comes in to wake me up as he is hungry and wants lunch. I sleep till he woke me up alittle after noon. I feel like a bad mother. I got up made a sandwich for him, had to sit down while making it as I got dizzy, then went bad to bed, took some pills for the headache, and was back out. I am tired all the time, I have no energy, I am dizzy all the time, my b/p is running really low, my hands and feet are ice cold, I have blurred vision..... I don't know what to due. Plus the chest pain has gotten alot worse, and my heart skips a beat then the pacer kicks in and this goes on alot of the time too.

I am paced at 70, and my pacer is pacing 93% at the time, I saw the doctor on monday,he didn't look at my records, he said I would feel better if I didn't have a pacer, and that I should have it remove, and I would feel better, plus people that have POTS, don't need pacer for a form of treatment. I understand where he is coming from, but I have 2 abltions and most of my sinus node is gone. How could I have the pacer removed? Plus he also didn't seem to agree with the records from cleveland. He beleive since I didn't pass out on the TTT it wasn't a postive test. While in Cleveland they said it was positive because of how my b/p changed. Also we didn't think the blood volume matter. So he didn't think I needed the cadrio rehad, cleveland wanted me to go thought, plus this doctor wants me to stop all my meds. I am taking Midodrine, Fludroctisone, theophylline, Metoprolol, Midrin, and Cymbalta. This is the 3rd doctor back home I have seen. Not one doctor will listen to Cleveland. It so hard to know whats wroung, know that you think a doctor is right ( the ine in clevelenad who deals with POTS) and not have any one listen here. One doctor just wanted to increase the meds, and see me in 6 months.

The only person on my side is my family doctor, and he said on friday I know somthing is going on, but he feels helpless. He thinks I would feel better if we turned the pacer up in the 80's but he can not do this, and could get my blood prusser up, and to stay up. He also wants to get me into the cardio rehab program that Clevelad wants but we need a cardio doctor here to agree and that not happening. So he said monday hes calling the Dr. at Cleveland to try to come up with idea to get the treatment I need. He siad I may need to fly back out there and see whats going on. The problem with this is, even if I go out again, I still am not going to get the care I need here. Plus I am now waiting and hoping that disablity goes though, and have not worked in two months, Last time it cost about $1500.00 to go out there for the week, and this time I just don't have the money to spend.

I don't know what to do. Is it wrong to want to get the treatment I think will help. Is there a time just to give up and just live this life. I just want to do everything in my power to get better, I want to go back to work. I want to have a life again. I don't want to be stuck in a house 24/7. I want to have human contact, that has nothing to due with my health, or helath care.

I sorry for venting.... I know many of you are going though alot, I just don't know what to do. Any thoughts, or ideas would be a help!

Hope you are all having a great weekend!

Amy

[JenniferInOhio]

I am so frustrated for you. I'm so sorry I don't have any advice. I don't know why doctors won't help anymore (not just with POTS it seems, but everything). Maybe Cleveland Clinic can guide your pcp on how to treat you?!?

[MomtoGiuliana]

I am really sorry for all of the challenges you are facing. Your case is pretty complicated. It sounds like you really need a good, local specialist. Are you sure you have eliminated that possibility--have you (or someone for you) looked into the expertise of all local neurologists and electrophysiologists? Neither my pcp nor my ob-gyn even knew that there was a POTS specialist so nearby--the one I see now--you may have to do the research yourself or with someone's help.

It is so hard to have a young child when you are this disabled. Please don't feel like you are a bad mother. You are doing everything you can for your child and yourself, it sounds to me. Do you have some help with your son?

Let us know how you are doing.

Katherine

[AJVDK]

Now heres a dumb question... but I have seen cardio doctors, and EP doctors but never a neurologist. Do you think it would be worth a short? Do you need a referal to see one?

Amy

[corina]

hi amy,

i am so sorry you have so many problems. i do know how it feels to have children and not being able to look after them the way you think you should.

i think you need a doctor (and maybe a neurologist) who can help you with all your meds. who can guide you through what you need or don't need. so you need someone with knowledge about POTS or someone who's willing to learn.

i have seen a neurologist in the past who diagnosed me and tried to help me with my meds but in the end there was nothing left and although i become slowly worse he told me that i needn't come back because there's nothing he can do for me. the only people helping me now are my pcp who is doing the best he can and is willing to learn about pots and my pt who helps me to stay in some state of mobility (at home i mean as i can't go out most of the time).

i have stopped finding answers (i think ), i'm trying to stay as well as i can and live my life as well as i can, that's the only thing that is left for me for the moment.

if i were you i would try to find a neurologist (who has knowledge about pots). also you might need some help with your son and/or around the house. it is difficult to admit but pots can really force you to make adjustments in your life.

hope this helps,

corina

[Poohbear]

It's worth trying to find a neurologist but I can also tell you most of the time they are even more clueless and know nothing about the cardiac side of the symptoms or how to control them And/or they will often prescribe medication that may not be good on our bp or heart rate so you really have to watch them.

Having said that though, I think it's still a good idea to search. Print some info from the main page off of this site to take to your appt. If the Dr. is willing to research and learn then you may have a Dr who will help you even if they don't currently know much about POTS.

EP's (electrophysiologists) are sometimes more helpful but I can also tell you from plenty of exerpience having lived in many states in the U.S. many are still clueless and MANY have never heard of POTS. Many have heard of NCS but they don't understand POTS or know how to distinguish the two which can slow down the process of finding the right combo of meds that will help you.

One thing I found helpful in my area was searching for a Dr or clinic that treats patients with MS. My experience is that while these Dr's don't know about POTS, once you explain it's a disorder of the autonomic nervous system and list your symptoms for them they "get it" better than the average Dr. One pitfall though is sometimes they want to first rule out MS since that is their specialty (which isn't a horrible idea but very unlikely for most of us that that is what's going on). It seems that since MS patients also have such fluctuations and sometimes odd symptoms that the Dr's who specialize in treating MS are more patient, understanding and used to the heavy paperwork load that can come with patients like us.

I don't know where you live but where I am there is a really good MS clinic.

Just trying to give you another option to think of.

Hang in there! I do understand your frustration!

[yikespanic]

Amy,,

It's just a crazy thought but do you remember story a couple yrs back about the doctor who was stationed on a base in the Antartic and had breast cancer and couldnt get out because of weather for testing and she visited another doctor over video/computer conferencing. Records can be faxed. Maybe your doctor and Dr. Grubb's office can work together without you having to go there? Dr. Grubbs Nurse Practitioner is Beverly Karabin R.N. (419-383-3963) maybe your physician can call her and arrange for a phone consultation at least to educate himself on proper treatment, maybe even enclude you somehow, kinda like a virtual visit? It couldn't hurt to ask. Maybe the Doc at the Cleveland Clinic would do the same?

Kim

[dizzygirl]

yes.. i had the thought of contacting Dr. grubb as well.. via phone if you cant swing it finacially to go there..he can work with your PCP.. its worth ashot!!

HUGS

[michiganjan]

Amy,

I think you will surely end up doing better than you are now. The question is what is the best way to get there?

I think either a return to Cleveland or go and see Dr. Grubb. You really need someone knowedgable about all aspects of your problems, and this should especially include knowledge of cardiac issues and the pacer, and all the meds you are one to help you manage the meds and work forward to a better place for you.

Just keep of forging ahead. You will get there, but it may take time and experimentation.

[Suzanne]

As a mum with 3 kids, I feel for you. It is so hard, you just want to do your best for your son, and I am sure you are and he knows that you love him, that is really the main aim of parenting.

Your doctor problem is major, but I encourage you to keep trying until you find help. Can you see Dr Grubb? Save up, etc. Is there another place that is the best around? I have always tried to find the guru in the medical field. The locals mean well but sometimes just aren't up to it. Maybe there is not a lot to be done, but at least you can eliminate everything and know that you have tried. I hope you can keep up your spirits and hang in there, you are worth it

[dianaD]

I'm so sorry for the trouble you're having. A good doctor is a must, so how can we get you to one?

A little known clause in most insurance coverages, is a "rare disease" clause, where they have to let you see a specialist in that area and be covered by the insurance. Surely your PCP can help you get to Dr. Grubb, Mayo, or Vanderbilt.

It was worth it to me to go outside my insurance to get to Mayo. It cost $6,000 and went toward an out of network provider deductible, so for the rest of the year, I was able to see all kinds of doctors who knew POTS, and I had already met the deductible.

I would plead with your PCP and provide him/her a list, with phone numbers for Dr. Grubb, Vanderbilt, Mayo, and maybe the list of MD's specializing in POTS in your area (I think it was on the other dysautonomia site.. brain fog... can't remember where I saw it...)

Don't give up!!!

[AJVDK]

Well just got a call from my Family doc. Wow I am impressed he called me at 9:20pm to let me know what he wants do do. Cleveland called back today. They are increseing the the fludrocortisonw to two times a day now. ( I am worried about this as last time I blew up and retain so much water) but they are trying to get my b/p up. Also the are changinf the midodrine at night to only 1/2 of a 2.5 mg, but will stay at the 2.5 mg at 7 am and 2 pm. I have to go in for blood work to see where my electrolytes are and then again next week. Dr thinks that could be part of the problem.

I also called Dr. Grubbs office today. I bad part is there are into aug form new appointments. Wow I really can't wait that long. There are no specialist here in Iowa which makes in hard to get the treatment needed. I went to Mayo 3 times in 2005, but also saw a ep doctor who said I had NCS. Mayo is only 4 hours away, I am not sure it a diffenrt doctor at Mayo would help or not.

The good news is the doctor at Clevelnad is will to help in any way with my treatment over the phone woth my doctor, as we have not been able to receive treatment here from a doctor. I am hoping that we can at least find a treatment to help with some of the POTS stuff I understand I may alway have it but at least what to try toget help with some of the really bad side effect like the headaches, and dizzyness, and it would be nice to get my b/p up!

Thank you all for all your input. If you think of anything please let me know!

Amy