"Treatment Resistant" Pots?

[jem15]

So when I asked the dr who finally diagnosed me with POTS,"what's the next step if i I don't respond to the increased dosage of Mestinon?"....he basically said your condition will be considered "treatment resistant" and "you have to adjust your expectations". Now I understand there's no official cure, and sometimes people don't get better and stay disabled... and that I've already tried Beta Blockers and anti-axiety/depressants in the past and none of them have worked and usually they make me worse..... But still... is there really nothing else to try? I thought I read somewhere about stimulants like Ritalin being tried...

or if even there is no meds... does it mean you just give up and leave the patient with nothing to try? I know I cant expect any POTS miracles and I may be sick forever... but it gets me sooo mad for doctors to give up so quickly... I don't have the luxury of walking away from this, ha, neither should they;-) they're doctors... i think it should be their job to at least make an effort, even when they dont know what to do.... there's no researching.. there's no talking to other doctors... there's no educated guesses to try their own things, whether pharmacological or not...

Argh! Anyway, sorry, guess this is more of a venty post.. but just wondering if any of you out there who have seen "POTS specialists" or "autonomic disorder specialists", if they've used the term "treatment resistant" to describe you or what happens if you dont respond to some initial medications... Though this dr was the one to diagnose me after 15yrs, his main expertise is sleep medicine... so i know i need to try and find another doctor... it's just the pickings are slim.... the only other autonomic specialist that's around but not easy to get to is in NYC. I'm guessin I'll have to try him again.. he did my initial testing.. but I've been let down by every doctor i've seen so I know I cant expect much. I seen a ridiculous number of doctors, probably over 50 and still have yet to find one that will tough it out and at least hang in there trying to treat me....if any of you are from the NJ/NY area and found any doctors willing to put in some effort, please share! :-)

[dsdmom]

I'e never heard the term "treatment resistant" in regards to POTS but c'mon, I don't think much about POTS or dysautonomia is actually 'treatable.' Everybody is different and responds differently. However, there ARE lots of things to try - now I'm 4 years in and have tried SEVERAL things but have a great dr and I'm STILL trying new things. Of course they get more intense once you've used up the 'basic' options.

Anyway, I wouldn't let your dr tell you there are no other options - one must have hope. Of course this also depends on if you have hypo or hypertension:

Have you tried: (and I know you tried a couple of these but I'm just listing everythin I can think of off the top of my head):

beta blockers

florinef

salt tabs

increased fluids

compression stockings*

midodrine

mestinon*

ssri's

IV saline infusions a couple times a week*

if you have hypotension: adderall, ritalin etc (I liked adderall a lot - VERY low dose - but got headaches from it)

ivig*

*are the things that I am currently using. I have tried many of the others without success. IVig is difficult to get approved by insurance but may help if you have an autoimmune issue contributing to your dysautonomia. I started 2 months ago and my neuro thought I should feel a difference already but my immunologist thinks it can take 3-6 months so we're keeping at it...and btw, I only see an immunologist because she specializes in the immunologic abnormalities (and there are a TON) in CFS, which I have come to realize I have.

Also my neuro just told me that he believes that droxidopa will be approved next year for hypotension.

Honestly, 4 years in I can tell you that the biggest thing that has helped is time. But it's not getting me back to where I want to be. I find the saline infusions 2x a week extremely helpful. They don't make me feel like a million bucks but I find I can do more when I get them. My immunologist, pcp and cardiologist were all on board with this but yesterday when I told my neuro I was doing it he wasn't thrilled. Told me I could get the same effect by drinking which is not entirely true. Some people's intravascular volume responds better to IV fluids. So too bad for him!

Anyway I just want to say don't give up. You may have to find a new doc but maybe your doc would be open to discussing other options if you brought the to him /her.

[juliegee]

Poppycock! Wonder if that'll get bleeped out ??? Just because the few treatments your doctor knew about didn't work doesn't mean that you have "treatment-resistant" POTS. HIS treatments haven't worked so far; doesn't mean that others won't.

Look under the physician section of the DINET site. There are many options for New York & New Jersey. Dr. Julian Stewart is an excellent ANS doc in Lyndonville, NY, but he specializes in pediatrics. He is doing research studies with adults up to 29 y/o (not sure if you qualify?) The research also consists of various autonomic testing & trials of treatments. Even if you're too old for this, there are other options near you.

When I was feeling disocuraged about my son's progress, his ped at Hopkins said: "We've only just begun to fight." Goes for you too, Caterpilly. Dust yourself off & look for a new doc.

Hugs-

Julie

[toddm1960]

Julie........watch your mouth...... , isn't Dr Stewart in NYC? I'll check the doctors list again, I'm only an hour east if he's in Lyndonville. You might be mixing him up with Dr Bell.

I'm 5 years in, tried everything out there and nothing. No change, it waxes and wanes is the best I'll say. You also have to look for the primary cause of your POTS, this can make a huge difference in what and how you react to avialable meds. Good luck pilly hang in there and fight for more answers, I hope you find things to help you.

[juliegee]

Julie........watch your mouth...... , isn't Dr Stewart in NYC? I'll check the doctors list again, I'm only an hour east if he's in Lyndonville. You might be mixing him up with Dr Bell.

I'm 5 years in, tried everything out there and nothing. No change, it waxes and wanes is the best I'll say. You also have to look for the primary cause of your POTS, this can make a huge difference in what and how you react to avialable meds. Good luck pilly hang in there and fight for more answers, I hope you find things to help you.

I'm trying to watch my potty mouth, toddm1960

Whoops- you're right. here's a link with Dr. Stewart's contact info: http://www.nymc.edu/fhp/centers/syncope/J_Stewart.htm It is Dr David. Bell in Lyndonville. He's another great ANS ped. Boy, in NY the kids have it made

Great advice about searching for the CAUSE of your POTS!

[MomtoGiuliana]

As others have said, there are many possible treatments available and furthermore time itself can help for many people. I am fortunate to be the patient of a specialist in autonomic dysfunction. My specialist has said the average time to recovery from POTS is 4 years. I don't know how recovery is defined or where this came from, but there must be some truth in the concept that some patients do need time to "recover". My specialist has also said that (in his opinion) it is generally a waste of time and resources to try to pinpoint a cause of POTS--UNLESS symptoms are unrelenting despite attempting various treatment options. He says that even if you know why you have POTS (if indeed that can be determined and it often cannot be) or what "kind" of POTS you have--treatment is often the same choices and approach anyway.

[Sallysblooms]

There are so many things you can do for POTS to heal and feel better. The doctors need to know about supplements and blood tests. Most are clueless. We all have to know how to find good doctors and learn about supplements ourselves. I am guided by my doctor with my supplements, the right dose and brands. I have read everything I could find daily . I also bought a textbook on the autonomic nervous system.

Julie, I loved what you said ...Dust yourself off and look for new doctor. Very good advice when people do not get help they deserve!

[jem15]

Thanks everyone for your replies:-) Yea, I know I have to "pick myself up, dust myself off, start all over again".. like that song;-) Ha, I just feel after over 15yrs, I'm pretty dusty;-) But know I don't really have a choice, if you don't move on and keep looking and trying, then youre guaranteed not to get better. I run on hope, and it just ***** when doctor after doctor takes that from you. I wish I could find the, "we've only just begun to fight" doctor.. a decade and a half and still looking... but hopefully will find him/her one day...

I have looked at the dinet list , pretty much ran through it, but the one Columbia guy on there is who I'm going to try and get in with now. I found a local neuro who supposedly knows him, but has been trying to reach him for 2 months, so not sure how it's going to go.. but if I can get them to talk/collaborate it might work out.. I figure even if I've tried a bunch of meds and nothing has worked... hopefully a guy who does or is up to date with the research will know if/when something new comes out or if there's a study to participate in. Oh and I tried dr. stewart a few yrs ago when i was 29, i was rejected, at that time, 29 was too old for him, and i was referred by a good friend of his, and i talked to him personally, and he still rejected me. Ha, now he opened up his studies to 29, but i'm almost 32. argh!!

And yea, CFS was always thrown out there too, as well as vestib migraines, and so if that's going on, or if there's some other undiscovered condition causing things... that could be why I havent seemed to respond to things yet.. thanks everyone for your support, and crossing my fingers I can get in with the autonomic guy at columbia, and have him collaborate with my local guy for treatment... we'll see!

[jem15]

Lol, funny poppycock was ok but ***** got bleeped. Hehe..sorry

[Sallysblooms]

Caterpilly, good luck, I sure hope you find a good doctor. It is such hard work!

[Birdlady]

The problem is that all POTS doctors care about is treating symptoms. They are not looking for causes. I know I'm the minority here but I absolutely refuse to be placed on SSRIs, anti-depressants and adderall because I know that's not is wrong with me. In my experience if increased salt, florinef or a beta blocker doesn't work, the doctors won't know what to do with you and honestly you are probably on your own to figure out what is really wrong.

I've been at this for years and intend to figure out the true cause of my POTS. I've figured out other health problems of mine, so why not POTS? It takes research and a lot of dedication to figure something out like this and I doubt it will be cured by popping a pill.

[Sallysblooms]

Just like with my CFS, POTS may not have a cure. Many, many illnesses have no cure.

The great thing is that with the right doctors, we can improve dramatically. Treating symptoms and supporting our immune system and the health of the entire body is important. The right supplements are working for me. We need to support our body so it can try to heal and get the nervous system balanced again.

[Birdlady]

I believe there is a cure for POTS and CFS though, we just haven't figured it out yet. I've ruled out more serious conditions and keep looking for more info and things to try.

Edit: Some people have cured their CFS btw, but it's not an easy thing to do and it takes years and dedication to figure it out. What type of supplements are you taking that are helping?

[jem15]

Yea, just cause we don't know of a "cure" yet, doesn't mean we never will. that's why I get annoyed when doctors give up so easily, we'll definitely get nowhere if we don't try. but yea... alot of time, research, and perseverance has been spent just to get myself to where I am now...it's only now that I'm starting to get some sort of diagnosis, and am starting to gain some insight into the mechanisms that are off in me... so it seems premature to just say oh well, cant be cured after like one medicine, when it took 15yrs just to get some diagnoses...

And yea, I'm trying the supplement thing again too, i've tried alot of alternative stuff before but it never worked, but now I'm trying again with an internist who does integrative medicine/testing... and she just started to try and tailor some supplements to me... i'm starting with some concoction for adrenals that has licorice root... which supposedly works similar to Florinef, which I never tried, but I rather try a more natural altern. to it anyway.. and giving Coenzyme Q10 another shot. we're going to give it 3mo to see if it works or not...

Anyway, hang in there everyone. It's crazy hard, but I guess we got to keep fighting.. ha, I wouldn't be surprised if the cures for POTS and CFS are going to be discovered by patients like us who are mad, frustrated as **** and are not going to take it anymore;-)

[Sallysblooms]

Of course we all hope for a cure, but if we wait for it we lose out on feeling better now. We have to help our body feel better and stay healthy. That way we don't get worse or come down with colds, etc.

Doing supplements yourself is hard with no blood test in or doctor guiding you.

Dana,I take many things. Compounded hormones, Vit. E, C, D3, B12, CoQ 10, a great multi, calcium, magnesium, adrecor , Lipoic Acid Supreme, d-ribose, 5htp, and things to strengthen my immunity like AHCC and Maitake mushroom drops, zinc also. I drink a smoothie with Greens First and protein powder daily. They are full of good things. I do not eat gluten and I try to eat healthful foods for the most part.

I get extra choline from eggs. I try not to have too much stress which was ruined when I burned myself on steam when I made my bird some rice tonight! Ouch. Lots of sleep and rest too. I want to support my health so my body can heal.

My doctors tell me what to take and how much, we are all different.

[Ashelton80]

Of course we all hope for a cure, but if we wait for it we lose out on feeling better now. We have to help our body feel better and stay healthy. That way we don't get worse or come down with colds, etc.

Doing supplements yourself is hard with no blood test in or doctor guiding you.

Dana,I take many things. Compounded hormones, Vit. E, C, D3, B12, CoQ 10, a great multi, calcium, magnesium, adrecor , Lipoic Acid Supreme, d-ribose, 5htp, and things to strengthen my immunity like AHCC and Maitake mushroom drops, zinc also. I drink a smoothie with Greens First and protein powder daily. They are full of good things. I do not eat gluten and I try to eat healthful foods for the most part.

I get extra choline from eggs. I try not to have too much stress which was ruined when I burned myself on steam when I made my bird some rice tonight! Ouch. Lots of sleep and rest too. I want to support my health so my body can heal.

My doctors tell me what to take and how much, we are all different.

Greens First is the bomb!!! I love that stuff and it's amazing how well it works and how quickly I feel better on it! That and wheatgrass shots help too!

[jem15]

What's "Greens First"?

[Birdlady]

Of course we all hope for a cure, but if we wait for it we lose out on feeling better now. We have to help our body feel better and stay healthy. That way we don't get worse or come down with colds, etc.

Doing supplements yourself is hard with no blood test in or doctor guiding you.

Dana,I take many things. Compounded hormones, Vit. E, C, D3, B12, CoQ 10, a great multi, calcium, magnesium, adrecor , Lipoic Acid Supreme, d-ribose, 5htp, and things to strengthen my immunity like AHCC and Maitake mushroom drops, zinc also. I drink a smoothie with Greens First and protein powder daily. They are full of good things. I do not eat gluten and I try to eat healthful foods for the most part.

I get extra choline from eggs. I try not to have too much stress which was ruined when I burned myself on steam when I made my bird some rice tonight! Ouch. Lots of sleep and rest too. I want to support my health so my body can heal.

My doctors tell me what to take and how much, we are all different.

Sounds like you are doing a lot of things, so I commend you. I've done a lot of stuff over the years for my health, but sadly nothing has helped me. I have removed my amalgam fillings, did a little bit of chelation (I need to do more), eat no MSG, artificial sweeteners, gluten, dairy, yeast and refuse to eat any processed foods. I haven't eaten fast food for at least 4 years now. I've been diagnosed with adrenal insufficiency, but treating that has done little for the POTS. I've tried countless approaches and have yet to figure out what is making me sick.

I have high NE levels, so beta blockers can be helpful if I'm in a pinch and need some relief. However, I don't like taking them on a daily basis because it's not real. I want to be truly fixed at some point. If I take an RX that hides my symptoms, then how do I know I'm actually getting better when I try a natural approach? The answer is that I don't.

Maybe I'm sadistic but when I feel my heart racing it gives me motivation to keep researching and going. For some reason today is a really bad day for me. I experimented with making my own kefir and yogurt and while it's supposed to be this amazing thing, it made me so very ill. That's another thing I can cross off the list. haha

I have a hormone doctor guiding me, so I can get anything tested I want as he's really open-minded. I will find a cure for my POTS! I cured my alopecia areata, so I have faith that this can be done.

[Sallysblooms]

Caterpilly, you can Gogle Green's First. It is a powder with a LOT of good things in it. I add it to the smoothie I make each day.

I am very thankful I am improving so much, I hope you get better Dana.