Frustrated

[sbtalbott]

Hi-

I lurk from time to time on this board, and just felt the need to vent. I was diagnosed with POTS in February 2007 after being bedbound for almost 3 months with severe dizziness, migranes and other neuro type symptoms. After many months of changing around medications/ etc, it appeared I was somewhat stable (though no where near where I was prior to onset), and I was functional. My new baseline appeared to be occasional dizziness, arrhythmia, some GI upset, and fatigue. Suddenly, I'm having day after day of extreme fatique, nausea, gastric issues, dizziness and I guess what everyone calls brain fog...I feel very flighty, can't think, have trouble articulating my thoughts, difficulty with speech and even some visual disturbances (blurry vision, diffiuclty focusing). I take flurinef, midodrine and kerlone. My midodrine is 5 times/day, 10 mg each dose. Kerlone is 10 mg at night and flurinef is 2.5mg in the AM. I am also having runs of extreme tachycardia (>150) alternating with bradycardia down in the 40's. When I'm having bradycardia, I hold my PM dose of Kerlone (beta-blocker). I'm an RN. but am not currently working except to teach a high school chemistry class 1 day/week (I also have a chemistry degree). I don't understand this disease at all. My MD keeps saying that things should resolve, but then I find that it gets worse. I can't pin point anything that could have caused this exaccerbation. I have 3 children at home, homeschool, and am so frustrated about my inablilty to do my daily chores. We have a small farm, and I have gotten to the point that I have to rely on my 12 and 16 year old to do all animal chores, and have yet to get any of the garden in. I spent all yesterday in bed as I could barely stand up. Is my MD just being optimistic, or will this go on for the rest of my life? When I look back, I actually started being symptomatic in my late teens, but was told I had MVP. I was functional then, but would still have days I had palpatations all day, chest pain, etc. I just pushed myself harder and told myself I was just lazy. I'm now 42, and I can't seem to push anymore. Is this now my life???? I hate being so wimpy and feel so worthless. I'm an overachiever at heart, and I hate being dependent.

Thanks for those of you who read this tirade. I just needed some space to vent, but guess I should just really praise GOD for being able to do anything.

Kaye

[HoudiniCat]

Sorry to hear you?re going thru a rough time right now. I was also dx?d in Feb ?07 after 3 mos. of being bedbound. Spent most of ?07 trying to change around meds, make some lifestyle adjustments and get back to a somewhat ?normal? life. Sometimes I feel like I?m finally on the road to recovery and then one day out of the blue I?ll get slammed with horrible symptoms that make me have to leave my job, go home and stay in bed all day (or days).

Who knows the reason why ? too hot out, too cold, too much humidity, didn?t have enough salt/water, stood for too long, was too stressed, not enough sleep, maybe too many meds or too few or they need to be adjusted again or the best reason of all ? absolutely no reason! The unpredictability of this illness makes it impossible to truly understand.

My doc is constantly telling me I?m going to ?outgrow? this (I?m 47!) and I really want to believe this but some days I think this might be as good as it gets for me. Pre-POTS I was 45 and felt 25 ? now sometimes I feel 85. Last year was the first time ever I did not get my garden in at all. I did manage to plant some flowers and veggie in containers and tried to be thankful that at least I could do that. Got to accept the fact that ? for now ? this is as good as it gets ? and just try to keep the faith.

[dawn]

Hi Kaye,

This is a frustrating syndrome. I worked as an LPN for almost 30 years. I am now 52. I think I had POTS my whole life. I could just tolerate the tachycardia

when I was young. I was always a fainter. I am now on social security disability after a 3 year wait. Feel free to email me if you want.

God Bless,

Dawn

[wireless]

Hugs.

I just pushed myself harder and told myself I was just lazy. I'm now 42, and I can't seem to push anymore. Is this now my life???? I hate being so wimpy and feel so worthless. I'm an overachiever at heart, and I hate being dependent.

I know the feeling.

I think that we get ourselves more stuck in illness if we pushed ourselves for 10 or 20 years Lots of healthy people seem to push themselves and get pretty exhausted by the time they are starting to reach their career goals, but we were already sick in the first place, so... well I don't know what my point was there.

Is my MD just being optimistic, or will this go on for the rest of my life?

I think they look at the literature and see that most POTS patients recover, and that's what they pass on. Personally I think it's mostly the younger ones who heal, and the ones where onset was not related to their lifestyle being high stress. .

Hm, maybe you're in a flare-up and will get a few notches better suddenly, seems to happen a lot.

[JaneEyre9]

I hear your frustration. It's so upsetting to have all this stuff we want to get done, and without any warning, we then have to rely on other people to do it while we stay in bed. Talk about feeling out of control! Obviously we are not lazy, but our emotions can really get the best of us when we feel like we can't do the things we used to do. The past 2 days have been like that for me-- and to a lesser extent, the past couple weeks.

I noticed that you live on a farm-- do you ever use pesticides/herbicides on your farm or around your house? I only ask because your symptoms sound a lot like mine when I am exposed to pesticides (even very small amounts, as I am chemically sensitive). Sometimes our flare-ups have a cause, and other times they are unexplainable. I'm sorry you're going through a bad flare.

Kristen

[sbtalbott]

Thanks for the encouraging words. I was really struggling for a few days and very frustrated. I hate having my kids ask "Is this a good day Mom?" or not being able to run around with them.

Friends of ours had a memorial day cook-out and hoe down (square dancing). I had been feeling very symptomatic all day, but really wanted to go. We no sooner got there before I knew I was not going to be able to cope. I couldn't stand up, was so dizzy and light headed. My speech gets very impaired when I'm very symptomatic. (The first time that happened I was sure I was having a stroke. Slurred speech, difficulty getting words out.) My husband brought me home and my kids stayed to enjoy the dance. I cried all the way home in the car. I'm too young to act like an invalid.

Kristen, good suggestion about the chemicals. We raise only organic produce and pastured poultry, so we don't use pesticides and that sort of thing.

Intellectually, I know pushing things make symptoms worse, but I feel like I have so much that I want to get done that I need to push on days I'm doing better...that thought process always comes back to bite me.

Another question for you guys, I alternate between severe insomnia and then periods I'm exhausted all the time. I hate taking medication and really don't want to go the sleeping pill or antianxiety medication route. Valerian and cammomile seem to do absolutely nothing for the insomnia. Any suggestions?

[MomtoGiuliana]

So sorry for your challenges with POTS. I am close to your age. I have periods where I am pretty symptomatic, but as time has gone on (so far) for me, these episodes of being disabled by symptoms occur less frequently and with shorter duration, after initially being bedbound/severely impacted in 2002/2003. It takes a long time for most people to "recover" from being bed-bound with POTS and Feb 2007 was not too long ago. I still find I do have to be careful about pushing myself too hard. It is so hard, but with this condition, patience is necessary! I don't think your MD is being overly optimistic, but she or he may not understand how long it can take to recover to a managable level of symptoms (most people do, according to my specialist, but he says the average time to this level of recovery is 4 years). It also could be that you are not on the optimal meds for your particular needs. It seems we are all so unique with what helps us to feel our best. Fortunately there are a number of options available to try (under the care of your doctor).

I have problems with insomnia from time to time--that is an awful problem b/c it only exaccerbates POTS, often. I have never taken meds for it long term--occasionally a couple nights of prescription valium has helped me. I know it can be so severe for some people that meds are really the only option for managing it.

[pat57]

Hi Kaye,

I suggest you keep a journal of how much sleep you get and how you feel each day. A goods nights rest is essential for me to feel well.

You could add various other details and be on the lookout for a pattern.

The day before my period I was always wiped out.

I didn't know POTSers got bradycardia. Do they? Or do you have NCS also?

[Guest tearose]

Welcome to the forum. I understand and relate to your frustration. It is not a predictable syndrome and for some, yes, it becomes a life of managing symptoms and scheduling activities around limitations on a daily basis. Do not let yourself despair, the symptoms are limiting but you will get through the learning curve and figure out how to manage eventually.

My POTS began in 1991 and my kids were very young. I recall laying on the sofa and wondering how I would ever be able to walk again! I worried that they would grow up thinking they had a "sick" mommy. Well, I did get off the sofa with small increments and my sons are now 21 and 23 and are very fine young men. They remember all I was able to do, and they only recall that there were times "mom was fragile". That I had to rest, use a seat cane and drink lots of coffee. They are kind, compassionate and good people. They didn't mind helping out and they say it helped them become the people they are today.

I had to learn to push the envelope without pushing to the point of relapsing or getting worse. It IS very hard but you will find what works for you! AND, there will be times when you are doing everything "right" and a cold or a virus or who knows what, and you suddenly find yourself slipping backwards. Just always remember it is not your fault, you did not ask for this challenge, you of course don not want to be dependent and so you MUST keep gently hoping and helping yourself get through the rough spots.

Surgical menopause was a big ordeal in that I had major pelvic reconstruction too but not having the hormonal changes monthly was a blessing! I too will get bouts of bradycardia but it usually comes in the evening. I am living with it though, I remove my compression when I get slow rates. Oh, did you consider using a heartrate monitor to see what may be triggering the changes?

What works for you may be entirely different for someone else with POTS/dysautonomia so don't be harsh on yourself, just try to learn and adapt to your body and situation.

Here is what worked for me; A complete ANS workup at Mayo in MN. A good pcp here at home. No meds, lots of hydration and electrolytes. Compression garments and compression hose. A seat cane as needed.

I became "coffee and ginseng intolerant/toxic" this last summer and was sick until we figured I had to stop drinking it. Caffeine is a "drug" in my body and we are now experimenting with using pure caffeine once a day in the morning to raise my blood pressure.

It never ceases to amaze me that for all these years the best I could do was to behavior modify and no other treatment plans seem to fit for my body.

I have not been able to hold down a job and finally resigned myself to stop trying last relapse, July of last year. I am trying to enjoy whatever simple things I can do around the house and with my special circle of friends and family.

Trust that soon you will find something to make things turn around! I am sending you loads of support and hope!

best regards,

tearose