Pots Needs Better P.R.

[HopeSprings]

This thing about Mayo pushing POTS kids to go to school and last week with the cheery ABC news story about the lady with POTS (you see her on a bike, then she's better) and then Dr. Levine's response to Dr. Fogoros about the name Grinch Syndrome and how we just need to "have a sense humor" about this ... it's all just making me really angry. This is a serious neurologic condition that makes everyday functioning a nightmare. WHY isn't this recognized and why isn't it portrayed that way? I would feel better mentally, emotionally if there was some recognition of this. Sorry, having a bad day and had to get it out. I'll try to be happier tomorrow.

[issie]

Naomi,

I so agree. It's like we don't have enough representation of how it is on the other side of the coin. Those of us that don't get better and aren't finding our solutions. If we had the energy, we might could do some sort of awareness thing. But, I don't think "I" have it in me - maybe some others might. I did request for Life Extension Magazine to do a piece on us - but, haven't heard back from them. So, not thinking that will go any where. I know some others were trying to do some awareness things. I haven't heard what's going on in that respect.

It is very frustrating. Seems like the news media is very one sided.

Issie

[ramakentesh]

I read that thing from Mayo telling kids that POTS is causing 'wrong messages' being sent to the brain and there is nothing really wrong. What a load.

[L4UR3N]

What article was this? That is horrible, though not unlike how many other diseases were treated before they found the causes.

[ramakentesh]

Did you know that my great uncles had Type 1 Diabetes and were told it was caused by depression and to 'lye around' to cure it.

[ramakentesh]

the thing with work like that of Dr Levine is that they need to push for funding and sometimes have to make 'reaches of faith' in their conclusions to justify that.

[anna]

The following link on somatoform disorders make me realise why so many Dr.'s look at me and my children as if we are mad, http://emedicine.medscape.com/article/918628-overview#a1

[Dizzysillyak]

Great idea. Tc .. D

[anna]

I am not sure if this has been posted before but it is worth printing off and carrying around when visiting ER's etc!!

http://www.ncbi.nlm.nih.gov/pubmed/18977825

[jenglynn]

I think that we should maybe form a group of people who have the time and/or energy to focus on this and begin trying to make even the smallest changes. Even starting with our own local hospitals. If there are others who are interested then maybe we can start to make a change. It CAN'T hurt, right?

This is emotional for me like all of you. I was "born" with some kind of autonomic problem- POTS or whatever- and I grew up feeling different. I grew up always being tired. I couldn't keep up with the other kids. I tried, I never really let it stop me, but I realize now looking back, I had mini- flares (compared to what I'm facing now) my whole life. I was always a fainter. Some of the ridiculous explanations I'd get were not even plausible. I remember fainting and hitting my head and needing stitches at 12. The doctor badgered me and humiliated me in front of 5 or 6 people assuming I was pregnant. I was horrified. He insisted on a pregnancy test and told my mom to get ready to be a grandma. Of course, it was negative, but I was the one with the illness that HE didn't understand- yet I was bullied, or talked down to, or was told I had "severe" mental health issues (and please, I am not degrading anyone with with true mental health issues- they are also real diseases) but that wasn't the problem. Mostly, I was told I was fine and seeking attention- I can't even count the amount of doctors who told me that. Finally, I just learned to live with it, my parents forgot about it because I never brought it up unless I had an injury that really needed to be stitched ( I became best friends with butterfly band aids). I was often sick, would contract rare diseases or viruses, incapable of getting a fever, but I learned to keep my mouth shut and the only time medical care was sought would be when I was so severely ill I would require hospitalization. Well, my body was fighting an aggressive autoimmune disease, POTS and a connective tissue disorder that led to numerous injuries.

The emotional factor comes in with my 13 year old- who is sadly following in my footsteps- although minus the autoimmune disease at this point. She has had numerous syncope spells over the last two years and diagnosed at 12 months old with connective disorder. Extreme hyper mobility and skin issues. I DO NOT want her, or ANYONE to have to suffer as we have. Even at 37- after living 37 years in pain when I can not honestly recall a day that for 24 hours I felt healthy, energized and out of pain. I survived on adrenaline. Trying to get a diagnosis was an absolute nightmare. It is time for some awareness!!!!! Rama, your story about your relative dying of type 1 Diabetes is close to my heart. I was very close to my great grandma- and she always talked about her twin sister Sarah who died at 9 years old. It wasn't realized until years later, after other relatives were diagnosed years later, that the family put two and two together about Sarah and realized she was a diabetic. My grandma would tell me she would cry every night because she was so thirsty- it took her two weeks to die- and her doctor said there was nothing wrong with her- it was just what I was told- Sarah was seeking attention.

We are always told that this isn't fatal, some doctors say it is inconvenient others say it is disabling. We have world renowned facilities telling kids that it really is a parenting issue and some behavior changes will help them. Three weeks they head home with hopes of moving on with their lives. I truly pray they do- maybe some will- but many won't. I've been there. I have relapsed more times than I can count- and I don't even know if I can say "relapse" because it has never really been gone. My dad told me recently... "I've always had a fear that something was really "wrong" but we could just never find out what. I guess I eventually began to believe the doctors... It was in your head... I'm so sorry.."

How do we KNOW it's not fatal???? We all have different forms, yet are all lumped in a huge catch all net. I know I've mentioned several times I've had family die in their 50's of sudden aneurisms. Hypermobile, fainting family members with low blood pressure. Yesterday I received a full copy of my last 5 years of medical records on CD. I started looking through it... I had a head CT last year after a syncope spell which needed staples. It stated something being abnormal with my left posterior something something artery. I don't recall the terms- "Otherwise" a normal CT... Ummm... That's NOT a normal CT! When I looked it up online, I found that it can increase a chance of aneurism.. Important warning sign to look for- chronically dilated pupils, especially with one being bigger than the other if the bigger one is on that side. Guess what? Pupils are always dilated and left pupil is always larger than my right. With my family history, I should not find this info on my own!!! Maybe it's a 10% increase risk- maybe lower, maybe higher- but I should KNOW.

They have to do a better job categorizing us. I know there is controversy regarding this, but I have a strong feeling that my connective disorder factors in to my condition somehow. My aggressive autoimmune disease is the main culprit, I'm sure, but MY case is not the same as everyone's. An exercise program isn't going to cure me. I have 30% kidney failure in my left kidney. My thyroid doesn't work. My bladder is decompressed now. I want answers and they are not coming. I am starting to get scared. I want this figured out so if my daughter advances, we know what to do.

I know I rambled and I'm sorry (it's actually a result of my brain traumas so I have a tiny excuse- I can't remember the exact term but I tend to ramble and go on and it is part of my cognitive dysfunction to do with not having an accurate concept of time). I just want to say that instead of punishing kids with POTS we need to give them a big hug and tell them we are saying they have to feel this way and that doctors are FINALLY start taking us seriously. And we need to put more time, money and research into doing a better job of sub-setting different forms. I KNOW this is complicated and extremely difficult to diagnose let alone treat. I have sympathy for the medical profession. This is not simple and won't happen overnight. But instead of letting ONE doctor speak publicly for ALL of us, a doctor who speaks for a small minority at that- let's have the medical community as a whole stand up and say that this is complicated and we DON'T fully understand it- but we WANT to- and it isn't a one size fits all condition. Let's work together and get some funding, education and awareness- and start making progress.

Thanks for listening/reading to my rant, I appreciate your indulgence. I am especially crabby because I was supposed to have my follow up today with the "major facility" mentioned often about the kids- and because my kidneys have not returned to normal after my IVIG rejection I have to wait another month- at least to be seen to find out about my next course of treatment. It's been 3 and a half months already. So I'm just frustrated.

Jen

[issie]

Jen,

You really should see if you and your daughter (at least) can get checked for EDS the vascular form. With the history of aneurysm and the vein in your head being dilated - it might be a really good idea. That can be checked with genetics. Is there a genetic doc that you could call, at least, to talk to?

I agree we need to be recognized - but, most of us here on this forum - don't have the energy and those that aren't on the forum probably are not wanting to put what energy they have into a recognition endeavor - they have missed so much of their life already and just want to live it to the fullest - until there is a relapse (if there is) and then they will be back here too. I've tried to get a prominent magazine to take up our cause and write about us. I guess I can pursue that some more. Anything we can do - from our computers could be attempted. We can write TV channels and magazines etc. But, as for a physical endeavor - I'm not up to it and I think I may be more functional than a lot of people on here. It's a good idea though. I wish we could get someone with the strength to advocate for us.

Issie

[jenglynn]

Issie,

I am with you. Physically, I can't do anything. But I can send emails. I can see about getting brochures to all of our family doctors who are often the first stop. I can try to think about other things I can do.

For over a YEAR, there was not a neuro in my local hospital who would see me. They recently hired a new one and HE contacted me out of the blue and set an appt for next week. He has autonomic experience. I did file a complaint that all of the neuros refused to see me- so I'm guessing that's why he called. He said he thoroughly reviewed my chart and the connective tissue disorders in our family history immediately stood out to him. Since we are able to genetically test both my daughter and myself- he has some extensive tests planned. He is also interested based on our results in testing my dad and brother. I'm not quite sure what he is thinking but I'm glad it's something he wants to look into. Even if it has nothing to do with my POTS (which I think it may but that's speculation) I think it needs to be looked into. I don't know if I'm overreacting to the CT scan- but when I saw the info about the pupils that really scared me. The finding I saw on the CT may be no big deal... I mean no one saw the need to bring it up, but maybe if you factor in my diagnosis (which was unknown at the time) and family history- (also relatively unknown at that time) it would have changed the radiologist interpretation. I really TRY not to make up things to worry about and I'm wondering if I am doing that now and overreacting- OR if this is something I should pursue. Thanks Issie for your response.

Oh by the way- TOTALLY unknown to me- some close friends are doing a fundraiser for me. I'm actually a little embarrassed about it but so overwhelmed with the response so far. It's the end of April. But one of my friends arranged for me to have two interviews on 2 different local news channels discussing my condition. So as the time gets closer- I will definitely be asking for input from all of you and help about the best way to describe this in a short amount of time and to make SURE I'm not giving incorrect info. So- be prepared for me to be begging for help soon. Also flyers are being printed soon so any input on how to succinctly describe what my condition would be greatly appreciated. I may open a new thread about this to get more responses.

Thanks Issie!!!!

Jen

[jenglynn]

Okay- no clue what happened that response????

[Elfie]

I agree that it would be nice to have some better P.R.-- that said, innacurate P.R. that paints all POTS and dysautonomia patients as people that recover completely and fast with things like exercise or as teens that "grow out of it" could very well be more damaging to individual patients than no P.R. at all. At least prior to all these POTS telecasts and news articles, I could inform people about the condition and their internet searches would bring up places like DINET, rather than studies and articles that make light of what a lot of patients deal with.

I personally feel like I can't be involved because I currently don't feel I can be "out" in my local community about having POTS. I work in a field where word of mouth about POTS would make employers less likely to hire me, despite the fact that I do the work sucessfully without incident with POTS. I handle delicate and valuable objects and being the local spokesperson for a disease that involves fainting would not be a positive career choice. In fact, it doesn't seem that any employer wants to hire someone that could faint because of liability issues.

As far as POTS being serious, I have always been told that I have run-of-the-mill low blood pressure causing viral POTS that I would recover from. I'm young so lots of doctors have not taken me seriously or have grouped me with the "teens that will grow out of it" despite my case not fitting that mold. I have worked with POTS, been a student, and plan on both working and being a student in the future. I don't faint when I sit, so my doc allows me to drive at my discretion. I do faint, and am very limited in the work I can do and the conditions I can do it in and I have issues with several ADLs. I have fatigue issues, chest pain, and cognitive symptoms. I don't seem to have a genetic connective tissue problem. Many wouldn't consider my POTS serious as I am not currently on disability, don't have EDS, am not frequently hospitalized for POTS, am not bedbound, ect.

That said, I also think there is more to be said about the fatality and seriousness of POTS. Despite having "non-serious" POTS, last January I went into Congestive Heart Failure caused by dysautonomia. Although the guidelines on CHF have recently changed to say that it cannot be "cured"-- I have seemingly recovered without permanent heart damage. Maybe this does have to do with the fact that there wasn't any "cause" for my heart not to be able to keep up with it's work except for my nervous system not functioning properly, and because the cardiologist I see caught the problem right away because I was seeing him 1-2 times a month during that time period and he corelated my sudden weight gain with an increase in fatigue and shortness of breath and knew what to test for. Maybe there is some weird dysautonomia thing that exactly mimics a build up of fluid (20 pounds worth) around the heart and lungs caused by the heart's inability to handle the workload. Either way, I'd consider that fairly serious. CHF is fatal, and if POTS can cause CHF, even in rare cases then I think that it is important that people know.

[issie]

Elfie,

That is pretty scary and very serious. You're not the first person with POTS that I've heard of having CFS and/or heart attacks. Too bad, you couldn't be a spokesperson for us - because, you're very articulate and if you have more stamina (than me) then you might could do a whole lot of good. We need articulate people that can represent us accurately.

Issie

[martiz]

Several things have upset me since I have started to focus on POTS rather then ME.

The ME/CFIDS population has the same problem - people are too fatigued to start a grass roots effort.

BUT - it is not difficult to create a letter signed by different people protesting the behavioral aspect of the Mayo Pain program. Not to make it all negative - focus on the good but make sure they drop the psychological punishment which is barbaric.

Also, I am willing to send a letter to Dr. Levine - hate to harp but that Grinch thing is insulting and should be stopped.

Seems these groups (Levine and his cohorts and Mayo) are selecting tabloid style headlines that are catchy even if they are not accurate.

I am willing to try - would need some team members.

Marti

[HopeSprings]

innacurate P.R. that paints all POTS and dysautonomia patients as people that recover completely and fast with things like exercise or as teens that "grow out of it" could very well be more damaging to individual patients than no P.R. at all.

Yes, exactly. I'd just like to see an accurate portrayal about how serious this illness is, how difficult to treat and the reality that many people don't get better ...and that more research is needed. I worry that Dr. Levine has negatively influenced the way we are perceived and treated. (not that I blame everything on him). I had a very close family member tell me recently that she looked up POTS and was surprised how involved this was - how many symptoms and that it sounded BAD. (maybe she learned about it on Dinet!) I was so touched that she cared enough to do this, but also really appreciated the acknowledgment about how tough this illness is.

[anna]

To be honest I think when you start pointing out problems with certain Dr.'s methods, interventions, you make all the Dr.'s jittery! A number of Dr.'s out there are trying hard to find out what is going on with us, unfortunately we also have Dr.'s that are a tad aragonite and think their theories are right and no common person can know more than them and no amount of facts are going to sway them it is their personality that is at fault and they will go down telling you the sky is green regardless of what evidence they have in front of them.

I would like to suggest a subtle approach that might be of use to the real Dr.s that actually care.

Could we have a section on this site that we could log our own factual and medical information that relate directly to us, something like a data bank that we could direct Dr.'s and researches to. Some thing like, clear medical history, symptoms, medicine tried ones that work and so on. We could keep info on a no name basis if that feels better, with a contact code or something should Dr.'s want more info from us.

[issie]

Anna,

There is another site that has that very thing. I don't think I can post it here. So PM me if you want to know the link. It has a diary per se and also a chart for symptom listing for daily use. They also have where you can list meds and emergency info.

Issie

[L4UR3N]

One thing that doesn't help are all the videos about POTS that then in the middle of them say "It's not all in our heads" or "we're not crazy". Do you ever hear people with MS, Parkinsons, Diabetes, etc say these types of things? Of course not, because everyone knows better (nowdays anyway). Statements such as "were not making this up" puts doubt into peoples heads where it may not have been before. When people list their symptoms, such as tachycardia upon standing, blood pressures that are all over the place, syncope, etc, these are real objective symptoms that others can see or measure. These are the things that must be emphasized. Symptoms such as headaches, fatigue, vertigo, etc are completely subjective, and while they may be ok to mention they should not be the focus.

Another thing to keep in mind is that even though there is medical science behind the causes of fibromyalgia and chronic fatigue, most physicians today STILL think of these as psychosomatic illnesses (because fatigue, muscle pain and general malaise are not things that can be measured or seen) Lumping POTS in with them has not helped.

I personally have never once mentioned to a doctor that I am fatigued even though this is really an all encompassing issue. Unfortunately doctors hear fatigue and think "LAZY". You really have to demonstrate to doctors that you are sick before they will believe you. SHOW them how your heart rate changes when you get up. Have them take your blood pressure after you are standing for a while. Demand that they order tests which are PROVEN to show results in POTS (such as tilt table, serum catecholamines, etc). GIve them enough evidence, and they will believe you. They may not know how to help you... but at least it will have them scratching their heads a little.

[ramakentesh]

I agree with rissy.

Also sometimes I worry that coming across defensive like some the statements sent to dr Levine makes it kinda look like we are crazy by really going over the top.

I also have ank spond and that puts me in a good position to explain pots. Docs all know, recognise and understand ank spond so when I bring up pots and they dismiss it I can explain how much more disabling it is than ank spond.

Next mental illness and depression are recognised as problems that can arise in anknspond and no one claims its caused by the mind. Yet a disease like pots is more socially isolating so is more likely to cause depression yet many may nit seek treatment for fear of their doctor suggesting ut demonstrates that pots is mental illness.

That is a terrible price to pay. To be disabled, to suffer to the point of having very little quality of life and then to not be believed. Once they know why its happening hopefully this will. All change.

[Clairefmartin]

And myself and a few others are working directly with doctors to deal with this issue, if you want more info PM me email me at claireification123@gmail.com.

And not just with silly videos, much more involved, that is just my pet project!

Claire

[Clairefmartin]

This thing about Mayo pushing POTS kids to go to school and last week with the cheery ABC news story about the lady with POTS (you see her on a bike, then she's better) and then Dr. Levine's response to Dr. Forgoros about the name Grinch Syndrome and how we just need to "have a sense humor" about this ... it's all just making me really angry. This is a serious neurologic condition that makes everyday functioning a nightmare. WHY isn't this recognized and why isn't it portrayed that way? I would feel better mentally, emotionally if there was some recognition of this. Sorry, having a bad day and had to get it out. I'll try to be happier tomorrow.

Naomi- do you have a link to the Mayo thing?? I'd really like more info please. Thanks!

Claire

[sue1234]

I'm like Rissy and Rama. I don't list hardly any subjective things to doctors, and when I do, I describe them. If feel if I, myself, list things by medical terms, such as "I go into anaphylatic shock when I ...", then I feel the doctor will think I've been reading a list of symptoms for X disease and repeating them. I state descriptive facts such as, "when I go out in the heat, my heart races immediately and my hands begin to swell, then I feel lightheaded." The doctor can then form his own opinions. I have never had a doctor not believe my POTS because the signs were always reproducible and obvious.

With the PR, I don't think bombarding the doctors with negativity is good at all. Instead, I believe supporting the programs that have theories that make sense to us is how to go. From all my reading through PubMed, doctors develop over the years, either delving into a particular theory more, or investigating a new theories. So, I may not like Dr. X's theory on POTS at the moment, but I'll keep my eye open for anything he develps in the future.

I think PR is something that might be best left from a medical standpoint. I think getting behind the right doctors that seem to be doing the most help with our conditions says volumes. If any individual has something to say to an institution, I'm hoping it would be done in a personal, reflective way, as I'm not sure we all agree on the "message" being said. For instance, I might not agree with how Mayo's teen program is based, but it does help some kids, so it is not my place to put it down. Plus, there is the fact that I have never been through the program.

[martiz]

I am curious why the assumption is that any letter would be negative, subjective, over-the-top, defensive, accusatory, etc.

Perhaps that has happened often in that past with this population?

Personally, it feels wrong to stand by and let young people be bullied in this way by people in authority over them. I would certainly be watching the program for long term mental and physical damage. It reminds me of the way that my sister was treated in the 50's and 60's. She was born with cerebral palsy and if she had been born a decade earlier would have be institutionalized. My parents were instructed to raise her a certain way (as a child who was mentally handicapped, which she was not). She went on to college but never reached her full potential due to the damaging emotional and mental effects of being trapped in a body with limits and no one listening to her that her mind was fine.

As far as Levine's grinch thing - a nice, respectful letter is certainly possible asking him to respectfully refrain from using that terminology. Perhaps he doesn't know how many people find it offensive? (I know some people don't care- that's okay. Some people do care).

Just my opinion. No one has to act on it.

Marti