friday

hmmm.. i feel your frustration.. i really do

I know that for myself.. that i have had symptoms of pots since as far back as i can remember... i also remember that the symptoms that i had as a child where brushed off as "growing pains" or that i was a nervous child..

and as i was a teenager... they told me that i had adolescant adjustment disorder and an anxiety problem... that anxiety as they called it.. was inf act not actual anxiety.. but adrenaline surges... and the tachycarida was not stress it was POTS!!

I was 20 years old before i got diagnosed.. and i lost of count of how many docs i was taken too trying to figure what was wrong....

sicne getting diagnosed.. i have been fortunate enough to have been seen ands treated by really treated by 3 specialist and 2-3 docs that are familiar enough with pots to take a stab at it....

I think that pots is not as rare... as people think.. I think that it is not fully understood.. and the public/medical community is undereducated... and that if docs where more educated on ANS?dysautonomia.. that we would be seeing an out pouring of folks with ans dysfunction..

I think there will come a day.. when that day comes i dont know.. but there will come a day when pots... is known and is taken seriously.... and given props i guess for the disabling way that it affects a person..

remember that MS and diabetes it too was un heard of at one point.. and it now get funding and is recognised as a real problem.. by all of society and the medical field...

I know that it does not help us suffering with it now.. and the ignorance of people and med professionals...and the ones that do get it are so over booked/loaded with patients

anyways just wanted to say .. I understand and vent all you want!!

Wow 20 years! That's really horrible. and I know you must have gotten tired of hearing it was anxiety. I love how very doctor now thinks he's a psychiatryst.

When I first got sick they kept mentioning depression, and even a drug I could take. I was like. I think I would know whether I was depressed or not!! Then when the heart rate went up, they started saying it was anxiety. To tell you the truth after 3 years of getting no help getting pushed from doctor to doctor, getting no respect, being told it was stress,.. I developed al ot of anxiety. LOL In fact I would almost cry before every doctor appointment, and most of the times afterward.

It really took a tole on me emotionally to not be supported or believed. so I can't imagine 20 years of that.

I really wish I could do something to help at least inform doctors that POTS exsists .But what can 1 lay-person who's in bed most of the time do?

HUGS to you.

I understand your frustration. Except in Bethesda, MD at NNMC and NIH I have never ran into anyone else that knew anything about POTS. Including NC, SC, and AL. So a total of hmmm.... maybe 5 doctors, including Dr. Goldstein and his assistant.

I don't know if it more rare or just uneducated/ uninformed doctors. I didn't know which term to use, I guess both are actually about the the same thing. But if you really look at it, even the "experts" don't really know that much either. Yes they know some but POTS is poorly studied and misunderstood.

dionna

This is what I mean . So many doctors, so little education. How is a person to get any help. Never mind most of these doctors wind up telling the poor patient it's nerves, or depression.

And it's true, even if you find someone who knows about POTS they only know so much.

had I not been persistant, I would have still been undiagnosed.

Persistance is difficult when one is sick.

My POTS doc told me that autonomic stuff is a separate and complex field of expertise, and no, neuros and cardios are not routinely trained to deal with it. Have had to educate more than one neuro, and my cardio seems to think it's no big deal to have POTS, just a little annoying syndrome.

Now that I have been dx, it has helped my family doctor with other patients. Every so often I will get a call from my PCP's office, asking how they can get in touch with my POTS doc (they finally realized the number is in my chart!)

But I know that my experience has educated them to be able to direct someone else.

If auntonomic stuff is a seprate field, what kind of doctor would treat it? Is there a certain kind of specialist?

It's nice to hear that your PCP is interested in talking to your POTS doc. It's shows that they take you seriously and are looking to help others.

babu

On one occasion, I passed out at work and my boss put me in an ambulance and sent me to the emergency room. The ER doctor there, not only had never heard of POTS, but he thought it was something I was making up or had "misheard." My husband, who had rushed to the ER to be with me, was absolutely furious with this guy who was treating me like a complete idiot/hysterical female. He could see that my BP was low--that's not something you can fake. But he was so cavalier in his treatment of me, that my husband demanded to see the ER chief and made a formal complaint. Of course, nothing ever came of it or the letter that we wrote, politely suggesting that maybe some education in this condition might help.

Having this problem and dealing with people who don't know anything about it can be exhausting for everyone involved and just compounds the illness. It's very hard for me to explain for my family--who live 9000 miles away and don't see me that often--what I am going through and that I just can't do normal things that I used to do without a thought.

India

Ugh!! this is what disgusts me. You have a condition , you know what it is, but yet you have to fight to even be believed. It's ridiculous. And God forbid you should mention you got any information off of the internet.

It amazes me that they will laugh at that, but yet the internet was where I got my information about POTS, not doctors.I agree, you have to be careful about what you read and where you read it, but I am so glad that we do have the internet now. There are so many people that need help out there, that aren't getting it from thier doctor.

I have trouble breathing a lot.

I dont' get the wet feeling though. I have been noticing it happens prior to getting really bad gas and I can't belch it out. I have IBS so this happens quite often. So I am starting a restrictive diet..see if that helps. Don't know if you ever have GI problems but I thought I'd mention it.

If you just started meds I would look at that as a probable cause.

I know how horrible it is to have breathing problems! Hope you feel better.

Babu

This has been bothering me.

I have seen so many doctors I've lost count..due to having numerous physical problems. Yet only two out of about twenty knew what POTS was.

I had to explain it to the Neurologist..he didn't seem to think it was his domain...'see a Cardiac specialist' he told me. The Cardiac specialist was one of the ones that did hear of POTS. But since it wasn't a heart problem, it was not his domain. He thought maybe a Neurologist would know more about it.

It is said that many CFS patients have POTS. Yet not all CFS patients are informed of POTS..I never was. I found out abpout it on a search engine, while looking up low blood pressure and CFS. Since my doctor wouldn't believe my low normal BP would cause my lightheadedness, dizziness, etc.

Blood pressure is called fine as long as it's low normal..however no one takes it lying, sitting ,standing. Just sitting.

They told me my heart rate was high..must be nerves. Funny I don't feel nervous. If they had bothered to take my heart rate standing up they would have seen an unexplained jump of 30 beats per minute. Then they'd probably send me to the Cardiac specialist.

My whole point to al of this is, is POTS rare, or under diagnosed?

Some people say it took years to get diagnosed.

I just feel if more doctors knew what it was, at least the symptoms, it weren't regarded as something to not even bother checking for, or if doctors were more informed to look for this syndrome in their patients with CFS, it might not be so rare. Which might help it be regarded as something worth doing more research on. And also might result in some CFS patients..or any patients, for that matter, finding treatments that might improve their lives.`

I have found a miracle pill for me..yet...but I know just being diagnosed helped..then knowing 'What helps , What hurts", helped. Then, of course a forum full of people that have been where you are helps.

Salt loading has helped me. Prior to finding out about POTS doctor's didn't think of this very simple thing to help me.

I get angry when I write this.

I hate thinking of someone else going through what I had to to get diagnosed.

Forgive me for going on, but This has been running around in my mind for a while and I just had to get it out

There.

Babu

(quote)-

I am reading a lot of stuff from people here and it has been helpful. I am curious though how many people have just POTS or does it typcially seem to occur with other things? Does it eventually lead to other conditions? I am noticing that many of you are dealing with so much more than POTS. Does POTS usually occur with other conditions? Is it unusual to have just POTS?

But I am curious to get more info about whether it is unusual for POTS to occur alone.

Thanks!

Amy-( end quote)

Amy,

I have loads of other stuff going on besides the POTS.

It started about 6 years ago when I noticed I was fatigued a lot. Then the pain started. I was eventually diagnosed with fobromyalgia and CFS.

It all got much worse about 3 and a half years ago, when I started having hypoglycemic attacks.

My brother had died of a heart attack 6 months prior to this. I was out to dinner with him at the time. Everyone tried to blame the trauma of for my health. Thinking it was all in my head.

However, I was diagnosed with the Hypoglycemia, and then Anemia.

I do feel the trama might have made my already poor health worse.

2 years ago I saw a CFS spcialist. He diagnosd me with POTS

After that I was also found to have P.C.O.S. and then,

IBS.

So as you can see this is all quite puzzling..what's the cause ..what's the reaction?

I have some theories but no big red sign pointing the way.They all seemed to be linked to each other, but how and why I don't know.

I do wonder if this all might have to do with my Menstural cycle changing .

I was always regular. the 25th day of the month. Then 4 to 5 days of bleeding.

The year this all started, 6 years ago, my cycle abruptly changed. It became very irregular.

Before this point I had always been very healthy.

I wonder about early Menopause since there is a history of that in my family.

I know a lot of women going through Menopause develope POTS.

I have also wondered about the insulin connection. Since POTS is sometimes found in people with Diabetes.

My father is a type 2 diabetic, so it is in my family. Also PCOS, is thought to be caused by insulin resistance. Since I have a blood sugar problem, I wonder if that could be the cause for POTS.

As far as POTS occuring alone, obviously not the case with me. LOL

babu

Anyway, I just wanted to write about my positive experience. There are good doctors out there, even if they're uncommon. I don't feel comfortable listing his name here on the forum, but if you're from DC or Baltimore and are looking for a good POTS doc, PM me and I can give you his information.

I forgot to ask. Is he doing something for your nuerological symptoms?

I saw a neuro because of all of my symptoms, but since he had never heard of POTS and didn't find anything he was looking for, he thought I was fne. Real waste of time.

I would like to try a Neuro again just to see if they have any way of dealing with these symptoms.

I'm often bothered by vision problems. My eyes were checked and they're fine as far as th eye doctor is concernecd, but my problems are, more like sensitivity to light and patterns, and it's heard for me to read for long periods without geting sick. The worst times are when I can't drive because the light between the passing trees makes a pattern and makes me sick. Or if I have to sit in a white room with certain lights. the walls will strobe!

Also the Brain fog I have, and memroy problem drives me nuts. I also get numbness and tingling in the hands and feet. And bunring ocassionally.

As far as I read, these symptoms are common for nuerological problems. I would like to see if I could actually get a doctor that would treat me based on my symptoms. I thought there might be some kind of excersizes that might help. Like I used to see this doc when I was ltttle, who gave me eye excersizes to do to help my vision. I had an unusual focusing problem then.

I was just wondering if your doc does things like that?

I'm thinking thre might be things i could do for my memory as well. Unfotunately most of the docs I see are very conventional. (I'm on Medicaid so that limits who I can see) they want me to have a disease they have expierience in and if I dont' then they dont want to see me.

Babu

I had an appointment with a new neurologist in Columbia MD who really knows what he's doing when it comes to POTS. We went over my (now antiquated) Vanderbilt results, and also talked about my recent lyme diagnosis. He's doing some pretty interesting research right now with cortisol levels, and has been working with Vanderbilt on other autonomic research.

It was so refreshing to talk with a doctor who knows about POTS, who doesn't second-guess my diganosis or symptoms. He was also just very nice, and open-minded about the lyme diagnosis. He says that there's no literature linking POTS to lyme disease, so he's very curious to see how I do on antibiotics, because I'll be one of the first he's seen with both diagnoses. He's also willing to communicate with my lyme doctor so they can both make desicions about my treatment plan, as it's quickly getting complicated with all the new medications.

Anyway, I just wanted to write about my positive experience. There are good doctors out there, even if they're uncommon. I don't feel comfortable listing his name here on the forum, but if you're from DC or Baltimore and are looking for a good POTS doc, PM me and I can give you his information.

NIce to hear. I am glad you have a good doc. They're so hard to come by. I recently started seing a Gyno who is just great. it's such a wonderful thing when doctors treat you with respect and understanding. Unfortunately I don't have anyone that treat me for POTS like this, but it's still nice to have a doctor who listens.

babu

Thanks sue and spike. These drugs scare the crap out of me. Maybe I should find another way to deal with my anxiety attacks.

any suggestions? These are new for me.

Dayna

Well if you dont already have a therapist I would recommend that. Just talking for an hour a week about all of your crap can relive some anxeity.

But also as someone else suggestd cognitive therapy does help for anxeity. Unfortunately it's not as asy as taking a pill. But it does help.

I've taken ativan at diffrent doses from time to time to deal with my anxiety. I wouldn't exactly recommend it as it can be addicting. But it's an option. Some people that are prone to panic attacks take it just at those times when they feel an attack coming on. that way their body doesn't get used to having it all of the time.

Thre's also an herb called Valrian root.

You can fnd it in the drug store by the vitamins. Might make you sleepy though.

babu

Sue,

I'm sorry that you're backsliding. This may not be "news" to you, but it really sounds like you've got the symptoms of Chronic Fatigue Syndrome. It's relatively common with POTS. What meds are you currently taking? My son has CFS, POTS and NMH and went from being housebound to functioning pretty well. He's actually attending school this year! There is definately hope. Do you have a good doc, who is working to tweak your regimen? Keep your chin up. I'm sending positive energy your way.

Hugs-

Julie

Yeah I was actually diagonsed with CFS yars ago. I only fnally got the POTS diagnsed after seeing a CFS specialist.

I don't rerally have a doc that I see specifically for POTS.

This CFS specialist a I see is very expensive and I'm on Medicaid so of course, they won't pay for any doctors like him.

My G P is pretty useles for treatng it. Really I've only run into a about 2 doctors that actually even heard of POTS.

And so they have no clue on how to treat it.

Anyway,

I only see this specialist only once every few months. so it's slow going.

I've tried Midodrine,

Metprolol, Mestinon.

I've tried Provigil fro the CF but it doesn't sem to do anything. Basically nothing 's helpd so far.

I do salt load ,which seems to have finally raised up my BP.

So the only thing I can do now is keep readng and trying a new med very few months.

thanks for the reply

babu

H I just wanted to thank everyone for thir responses. I have been sick all week, ( what else is new) and didn't feel up to writing before now..but i sitll had to some back here and thank you all. It's nice to know I'm not alone.

babu

Quote- Do they just go down a list and hope something will work? I have been having mini anxiety attacks and my psychiatrist suggested trying another SSRI. Well he said effexor would be best for me. I'm scared to take because of people's withdraw stories but I don't want to be housebound due to anxiety attacks from POTS episodes.

Does anyone know if Effexor is bad for pots patients because it is an SNRI (I think). The what helps area says Venlafaxine (effexor) is particularly effective, possibly due to its actions on norepinephrine as well as serotonin.

Anyone have success on it?

I only had 15mins with him but I wonder why he didn't try something like Paxil or Celexa. They seem to be more easily tolerated.

Suggestions anyone?-End quote

I was on effexor for a short while. During this time I had a terrible drop in my electrolytes, and wound up half concious in the ER.

I was in the hospital for three days. They never found one cause for the sudden drop. They only thought since I had a salt imbalance already, some of the drugs I was on were not good for me all together. They said my doctor should have been aware that these drugs could cause adverse affects on me..needless to say he is not my doctor anymore.

Anyway,

I was also on Anafranil..so it wasn't totally Effexor's fault. But they said those two drugs could cause a salt level to drop, and they stressed Effexor espcially.

I'm not saying this drug will land you in the hospital. In my case it seems the combo of drugs I was on plus too much water intake may have been the cause . But I know they said that the Effexor could be bad for someone with trouble retaining salt.

So I would definately look into that, and talk to your doctor..Since you have POTS.

I copied the follwing from the effexor site-http://www.effexorxr.com/sideeffects.asp

Tell your doctor right away if you have:

Increases in heart rate

Extreme confusion or seizures, which may indicate very low levels of sodium in the blood

Abnormal bleeding or bruising

Sudden, unexpected eye pain, eye redness, or changes in vision, which may indicate increased eye pressure

Symptoms of mania or hypomania, such as persistently elevated or irritable mood, a decreased need for sleep, racing thoughts, hyperactivity, and rapid, excessive speech -end

If I were to take a drug like Effexor. I would at least want to have my electorolyte levels monitored for a while, every two weeks.

I would thoroughly check out any drug they put you on. Since most of them don't . Espeically since most doctor's arent' familiar with POTS at all.

Talk to your regualr GP or whomever treats you for POTS, and of course read the material that comes with the meds, and the reliable sources on the web. Or even talk to your pharmasist.

Hope this helps,

Sue

I have been salt loading for months, and my blood pressure seems to be up around normal most of the time in the docs office.

I'm not sure about when I get up. It changes , but it still seems above the normal level.

I started walking . I started out with 5 mins. then added a minute a week. I was doing okay with that for a while. I was able to walk farther and it felt good.

Then I got sick from my period and a sinus troubles, and was in bed for a month.

I finallly started getting better from that and I got hit with another bad time during my period.

Now I am trying to get back the energy to walk again, but it sems like one day I can do it and then I won't be able to for days at a time.

And I am sooo tired awhen I wake in the morning. It takes all day to wake up. When I finally do, It's time to go to bed.

It's so frustrating cause I'll finally be feeling enough energy to do something and I can't bcause I don't want to keep myself up .( I'd pay for that the next day)

But I just feel like I have no energy all of the time. Sometimes it's hard for me to get out of bed. Let alone take a drive somewhere. I do manage once in a great while. I'll go for a short ride. But Then I feel lousy again the next day.

I'm just very scared that this is getting worse.I dont' want to live my whole life in bed.

I dont have my own family and don't have any friends visit so I am very alone. When I get a ride out to the doctor's, it feels so good just to be around people.

I just a so frustrated and scared because I thought things were maybe improving a little. And now it seems I'm back to square one. Has anyone else gone through this Have you ben able to build your strength back up?

Sue

Hello All,

I just been thinking and wanting to know more info about Lyme Disease. Also if you have Lyme's Disease what from of treatment are you on?

Thanks for taking the time to look at the Poll!

Amy

Why does it take so long to get diagnosed? Also What is the name of the tests or tests that have to be done? I don't know if i've had them.

sue

I was reading some post about Dr. Grubb and someone said that he said POTS can get worse after Menopause?! Is that proven by studies does anyone know?

it just kind of scard the **** out of me because i have not yet gone through menopause and I surely don't want the POTS to get worse.

In fact I'm having such a horrible time with my period, a hystectomy has been talked about so now i"m really scared. I was hoping it would make things better not worse.

Does anyone have any info on this that might make me feel better.LOL

I was scared about this hysterectomy talk and now i'm just even more scared.

Sue

Ive been reading quite a few posts about how people are going to see Dr. Grubb. And some of you travel quite far to see him. I've noticed his name on a lot of the reference material on this site. Seems a lot of people think he is quite a doc.

My question is to those who travel to see him.

What has he done for you? I don't mean that to sound wrong. But I mean if you travel a long way i'm assuming you don't see him very often or maybe just have gone for the one visit, and so I'm wondering what has he been able to do for you without seeing you on a regualr basis. I know a lot of people say he is very kind and has a wonderful bedside manner. Is it just comfoting then to see someone that is so understanding. Has he been very intuitive with what meds will work for you ?Or maybe does he work with your own doctor? Has he been known to help a lot of people with POTS? i'm just curious about him and how one gets help from someone so far away.

Sue

Thanks for all of the info. it seems it might be worth a try on a different dosage.

I ussually don't have a very high bp laying down.

I also have a bp monitor so I could keep a check on it that way.

I'll talk to my doc about it thanks to all.

Sue

I am curious, because in some of the posts i have read

about this drug midodrine helping some people.

The reason i'm asking about it, is because i was given Midodrine a few months back. It said not to take it if you were lying down or I think basically if you weren't upright.

So I only took it when i went out which maybe reduced it to once a day, if that. The times I did take it I didn't notice any difference from before i took it. In other words no immediate results.

The thing is My GP gave it to me and since he basically had no knowlegde of POTS he wouldnt know how it works on POTS people.

So I am asking you, How does one take it? I mean do you in fact have to be upright or do you take it a few times a day reguardless of what you are doing that day? Also it is something you would feel a differece right away or does it have to get into your system and gradually work?

Any help appreciated.

Sue

Hi,

I don't know of any docs in NJ but I do hope you find one. I live in NY but from what I researched many of the ones in NY have limitations to who they accept.

I'd be interested if you get any info for NJ. I much rather prefer to see someone through word of mouth from someone who has seen a dr.

what do you mean by limitations? Are you happy with your current doc? I'd like also to see someone who someone else reccomends. I would consider traveling to NY, if someone said they had a good doc there.

sue

this was asked just in the last few days. here's the link to the post, wherein i also posted links to a few of the past discussions.

hope this helps,

melissa

help, I can't see any link.

Sue

hopefully someone on the forum will be able to give you some ideas as there are a few from NJ, but i did check two other listings of docs (NDRF & AAS) and none of them have any NJ listings. good docs are definitely tough to come by...

good luck,

melissa

Thanks for searching for me.

sue

NIH in maryland is close to jersey. maybe you could do a study and that would definately be focusing on POTS. just a thought. they would be paying for the study i think. hope someone here can give you some better advice.

dionna

thanks for the advice.

Actually if I had to, NY is closer than Maryland. The city is around 2 hours from me. I was just looking at jersey first cause i have a hard time traveling, plus I thought maybe just maybe, my insurance might cough up a few bucks toward the visit.

thanks sue

I haven't been here for awhile. And I know this has probably been asked many times before but. I'm looking for a thread of hope. I see a lot of people here have it bad.

And i am wondering have some of you had some improvememnt in your symptoms. I'm not saying cured just improvement.

Also is anyone working and active? At least part time outside the home?

Sue

I'm actually responding to the "hermit" post but I guess i wanted to know from eveyone who is stuck in the home. How do you deal with it?

I'm having a hard time because I've very isolated. I was always an introvert really so you'd think I wouldn't mind but I have had a past of depression. what that means is I have a history of people telling me how wrong it is that I stay alone and how i need to socailize and how just sitting around watchin tv is so bad.

It got to the point where I felt too guily to really become involved with a show or a book for those of you who read. I feel guilty if I just spend the day in bed.

I think I would have an easier time with this if I didnt' have that experience when I was younger. Back then I was a hermit of sorts . But I was totally okay with it until they; social workers etc. I ( was teen, so school made me see them) brainwashed me into thinkng I couldn't survive unless I was socailly active.

The thing is I 'm also wondeirng for you hermits out there. Do you have families? Husbands kids etc that live with you who keep you company?

Do you have friends that visit?

I live with my parents who are over 70 . my dad's just depressing. I used to have my brother as company but he died of a heart attack 4 years ago.

I miss him so much. I miss having someone to laugh with and just watch tv with. He used to take me out too so that I wouldn't have to drive.

I used to see my other brother and niece all of the time and go out with them. I miss that so much. I could take being alone a lot but I really miss them. I feel guilty that I can't go out with them anymore. They live an hour away so since i can't drive that far anymore I only see them once every few weeks, when they come over....lately it's been hard to see them because my niece is so full of energy that she wears me out. Then I feel bad that I can't be who i used to be with her.

anyway, All this is depressing me. which is why I sometimes have trouble going to boards like this. I read about how bad other people have got it and I feel doomed.

I'm trying to go to a day program for depression but it's hard t get there. Plus it's not for illness specifically.

I wish there were places or groups for people with chronic illness. So instead of handing out pamphelts on how to deal with depression. I could get hand outs on how to deal with being sick and stuck at home.

So how do you do it?

What gets you by? I know there's no magic answer. I'm just looking for hope that I can live with this and not be so miserable and anxious.

That I'm not alone.

Eveyone gives you advice on how to deal with it but they have no idea how it feels. There are so many support groups out there, but they are so specific. I dont' fit into any of them. except CFS and they only have one around here, once every month.

Anway,

after seeing the hermit post I had to ask how do you handle it?

Sue

hi

My doctor ordered an oxygen condenser for me last week. I've been using it several times a day. Been very POTSy since mestinon lost its effect...Anyway, happy to report that so far so good. It's helping a lot.

Thought this post might be helpful to someone whose insurance will cover it. (Where I live it's given on loan from an organization that lends medical equipment)

Ariella

I'm wondering in what way is it helpful for POTS. What symptoms does it help with?

Sue