As Good As It Gets?

[firewatcher]

I am about to give up on specialists. I check in every 4 months with my endos and neuro and they ask how I am: Not feeling good enough to do the things I want to do, but not bad enough to really complain. I still have symptoms, but they are "managed." I guess since I am not in any "acute distress" I am just a maintenance patient. Once I got my POTS dx from Vandy, they chalk it up to that; "well, it's just your POTS..." (like they know!) The looking has stopped as far as I can tell, even though many of the issues I have questioned them about are NOT POTS related (according to Vandy.)

Is this as good as it gets?

[EarthMother]

Is this as good as it gets?

No, in my experience what you describe is like intermission between Act I and Act II of a mystery play.

We never know what might happen in Act II. There could be a spontaneous healing, a miracle cure or a sudden relapse into the pit of POTS. But while we are in the 'holding pattern' its as if the action stops for a while. We may go to the lobby and poke around a bit, but until the lights blink and the show starts again there may be little else to do in the moment.

However it is also my experience that everything does and will change once again. We don't spend our lives loitering in the lobby. So hold on tight ... the theater lights will blink any time now.

~EM

[janiedelite]

I wish I had a better answer, but all I know is to figure out how to "manage." It's especially hard for those of us who remember being healthy at one time. Now, we know that there is something wrong and that we are not normal. We are told to accept these diagnoses as all that can be done for us. Once we have the diagnosis of dysautonomia, which is a disease that affects so many body systems, it is easy for the patients and the doctors to dismiss any unusual symptoms by throwing them under the POTS umbrella.

I think I'm lucky to have a PCP who knew me when I was healthy, and witnessed my progressive decline. Having been through it with me, she's more likely to think out-of-the-box. But she can only do so much as the specialists she sends me to don't have any answers for me.

Sorry I don't have any other info to give you, Janie

[Broken_Shell]

Hi,

I hear you... sometimes I feel as though my dysautonomia diagnosis just gives all of my doctors a garbage can to throw every symptom and problem into without further investigation. I think that the key is in accepting "good enough" because we know that we can flare at any time and then "good enough" will look like perfect, but we must also never stop fighting for better, for "normal".

Firewatcher, I know that you are a very educated person. Trust yourself and don't let the doctors blow you off. Here's my quick example.... I had a change in hormone therapy that has caused me to bleed heavily for over three weeks straight now. I've been to the doctor and ER several times and my hemoglobin has dropped from 14.1 to 10.5. I am very weak and can barely make it between the bathroom and couch without getting out of breath and feeling extremely light-headed. All the doctors keep saying these symptoms aren't from the bleeding because my hemoglobin hasn't dropped below 9. I don't need a blood transfusion, so it must be my other problems causing them. I couldn't believe it... I thought to myself, where is the common sense here? Well, yesterday I went to see yet another reproductive endocrine specialist who said to me, "Of course you are weak and can barely stand up... you've been bleeding heavily for nearly a month, you're blood counts are dropping from what yopur body is used to, and you are extremely iron deficient! How can the OB/GYN and ER doctors say that there must be another cause for these extreme symptoms that came on with excessive bleeding?" I wanted to hug the man, and I feel more comfortable following with him than the previous three doctors who just couldn't seem to fathom that prolonged heavy bleeding could make me even more weak and fatigued than usual. I just hope that in addition to being practical, he has a way to help me too.

Anyways, I know what it's like to keep having the same things monitored over and over and feel like you never make any progress and your doctor's visits are more like "courtesy calls." One friend once asked me what my doctor's appointments are like because she was used to going the doctor for a problem, and then having it diagnosed and resolved. Just hang in there and don't let yourself give up on striving for better even if you feel like your doctors have.

~ Broken_Shell

[Rene S.]

I am about to give up on specialists. I check in every 4 months with my endos and neuro and they ask how I am: Not feeling good enough to do the things I want to do, but not bad enough to really complain. I still have symptoms, but they are "managed." I guess since I am not in any "acute distress" I am just a maintenance patient. Once I got my POTS dx from Vandy, they chalk it up to that; "well, it's just your POTS..." (like they know!) The looking has stopped as far as I can tell, even though many of the issues I have questioned them about are NOT POTS related (according to Vandy.)

Is this as good as it gets?

Jenn, sorry it's been rough for you. You are my pillar of strength and I hate to hear that you are totally frustrated and I feel your pain. Doctors have a way of dismissing you if you're not bleeding profusely or have a limb that has been severed. That's my take. They hear what they want and discard the rest. As long as you are functional and breathing, and you give them your co-pay, then you are a good compliant patient and they chalk you up to being well due to their interventions! Hah!

You know the stuff I've been through, "oh you've had a normal cardiac cath, therefore any chest pain cannot ben originating from your heart" to "it's just your anxiety and try adding an extra klonopin or two". Extremely frustating the way we all are treated.

I wish you better days and I must say, you are one of the strongest, courageous people I've known.

Hang in there girl, I need you for my moral support!

Rene

[ramakentesh]

hey yeah i know where your coming from. My POTS is even weirder. I get it in bad boutes that last for a while, then it tends to ebb and flow - and disappear at times (i mean like a few hours a day) and its managable. And then I go on holidays and it ALWAYS totally improves only to return when i come home.

So I meet new people on my holidays and then catch up with them when im back at work and they cant believe the difference in me - im pretty good at hiding POTS (other than constantly fidgeting which i just cant seem to help) but the difference is obvious...

POTS is painful in terms of its limiting of your lifestyle and because its a pain to treat. On the one hand your over stimulated but your also tired - so if you treat the tiredness with caffeine sometimes it works but other times it makes the over stimulation worse, and vice versa - you treat blood pooling and in me it makes the overstimulation worse - you treat the overstimulation and it makes the dizziness worse, etc.

This is why many POTSies end up on two medications at least - one to reduce blood pooiling and the other to reduce the over stimulated sympathetic nervous system.

What we really need is a bridging medication - an intervention that addresses all the problems of POTS. And that isnt going to happen until there are firmer and accepted views. But it wont stop me looking (current discussions with docs about Kava - sympo dampner that does not reduce blood pressure... akthough its not viable for me until im 12 months out from my liver infection - **** tacos! I should have known the cheese wasnt pasturised...)

Your an artist - how do you find that it effects your creativity? With POTS ive found i get frustrated more and I also tend to rush everything for some reason. Before i had pots i could slowly consider things, after POTS not so much.

I hope i will find a magic bullet - if you guys had seen how much research my friend and I had done on POTS you would hopefully think i deserve one!

My view is that you are managing now but I really believe that sooner or later there will be a magic bullet - the leg poolers already have newer and better treatment options (mestinon and now immunoglobulin) and there are HEAPS of new medications just waiting to be tested (well some are actually already being tested):

1. Sandostatin - specific to stomach pooling and could be the drug of choice in the future

2. Methlydopa - dampening over stimulated folks

3. Doxydropa - like midodrine to a degree but it vasoconstricts through norepinephrine rather than just being an alpha agonist like midodrine or butchers broom

4. Ivabradine - a calcium channel blocker that has met with much success for POTS in the UK

5. Lostartan - an angiotensin II blocker being investigated for use in low flow POTS (who are mainly females)

6. SSRIs are being increasingly used for POTS - many patients have stricking results. I spoke to a girl here in australia that went from nearly bed ridden to back at work and returning to horse riding.

And im also looking into other options as well with my doctor - principally kava kava which I used a few times in the past with exceptional results (the best results ive ever had for POTS). I did try butcher's broom with unbelievable 3 day success before tolerance became and issue and there was a severe rebound of POTS symptoms after that so tread with caution...

I think POTS seems to be something like an onion skin - the more they look the more confusion they find in that rather than there being maybe 3 or 4 types of POTS, there may be dozens. Causes include ECD (endothelial cell disfunction, angiotensin II elevation and even more obscure problems like postural anemia, hyperventilation and patients who parasympathetic nervous system is disfunbctional causing their sympo systems to go mad)

So the answer is - no this isnt as good as it gets - we will have better treatments one day... in the meantime, keep looking for your answers!

[flop]

4. Ivabradine - a calcium channel blocker that has met with much success for POTS in the UK

Just wanted to point out that Ivabradine is in fact a totally new class of drug not a calcium channel blocker. Ivabradine works by blocking the If channel in the sino-atrial node of the heart. The f stands for "funny" because the researchers who discovered the channel had never seen anything like it before.

Ivabradine slows down the heart rate, but unlike beta-blockers it doesn't lower the blood pressure. This is because the If channel is onyl found in the SA node, there is a similar channel in the retina of the eye which leads to the most common side-effect of visual disturbance (phosphene rings - like an orange glare). The majority of people don't get visual problems. Most people who do get visual symptoms find they settle down after a few weeks on the medication.

Please note that I do take Ivabradine. It hasn't been a "wonder drug" for me but it has taken the place of my Bisoprolol very well and is better than the Bisoprolol was. I had to stop taking beta-blockers because of increasing allergies that meant that beta-blockers weren't safe for me to take any longer.

Flop

[bjt22]

You are in the same boat I'm in. My meds make me more comfortable, and to be fair, I was told that this was the goal..."we'll make you as comfortable as we can". I always thought that sounded rather ominous, but beggars can't be choosers, right? I am more comfortable, but that doesn't mean I'm significantly more functional. I'm "managed", too, and at times I do admit to getting a little resentful when it feels like no one is terribly interested in maybe helping me do better still.

[mcaimless]

Firewatcher-- your diagnosis mention Hashimoto's. Are you being treated for it? Most are not and are suffering needlessly. Please do check out this site and see if this applies to you-- Hashi's is treatable and you could possibly be feeling a whole lot better!

http://www.stopthethyroidmadness.com/hashimotos/

[ramakentesh]

Quite right Flop - my apologises - it is not a calcium channel thingie and also from the few people Ive spoken to it hasnt been a magic intervention.

I think i was trying to provide hope at the time and wasnt really thinking through my post.

To clarify:

Ocreotide is a vasoconstrictor specific to the stomach

Droxydopa/LDOPA is a kind of precursor for Norepinephrine that bypasses the dopamine precursor system

Losartan is an specific angiotensin II blocker that may assist in some cases by increasing the bioavailability of neuronal nitric oxide.

Also I believe the ECD disfunction scenario is no longer being actively pursued. Other problems have been identified instead.

[hollie]

I have to say I'm in the same boat as well... Ahoy Matie!

MOST days I "magange". But it's still to the point I know I can not work or even do a lot of "every day" activities. That's not right - is it? I've been very frusterated lately... sorry I know that's no help to you. But just know you are not alone - sometimes that's help in itself!

Here's to "managing"! CHEERS! *She chugs a gallon of gaterade!*

Hollie

[mountain girl]

This topic caught my attention because that is how I feel. I could relate to alot of the replies from others too. I am thankful that I am managing with the POTS, it's just that I never know from day to day how much I can tolerate and long to feel "normal" again. I have been diagnosed with POTS for about a year now, and I do work part time, but after work, I usually only have enough energy to bathe and lay down in bed. Thank goodness my job has some periods of sitting and some periods of standing or walking. Is this as good as it gets? Unfortunatly I think this "disease" seems to vary so much from person to person it is hard to say. Sometimes I am not sure if I am a little better over time or if I have learned my limitations better over time. I take a beta blocker Bystolic 2.5mg. daily and Florinef0.1mg. daily. Doctors have tried increasing the doseages on both of these but I do not notice that I feel any better on the higher dose and this seems to keep my heart rate in 60's to 70's most of the time. The tiredness for me sometimes goes away during the morning hours, but as the day goes on I feel exhausted. I especially liked the reply about hope for a cure or new meds that can help us POTS patients. The number of people who are joining dinet and repling to topics shows there are plenty of people like us with the same types of symptoms. If only there are doctors and or researchers who are really pooling info about this, which I don't know if there are. Thanks to the person who gave info about newer meds that are being developed and tried. I know it must be hard for you and it is also hard for me to think this may be as good as it gets, but I am trying to focus on the good days or even hours that I feel good rather than on getting "well". I find it less disappointing that way if that makes sense. I used to feel better for a few days and think I was getting well only to find that I just had a few good days. Yes, I feel discouraged sometimes, but having this website has really helped me and I hope it helps you too.