New and feeling lost

[Mama Sarah]

I'm new to the forum and stumbled across it when Googling for advice.

I have:

• POTS, with tachycardia and low BP that can occur randomly, even when I'm lying down.
• Neurogenic bladder and currently have a supra-pubic catheter although I'm seeing a surgeon next week about potentially getting a Mitrofanoff Conduit.
• That incredible ability to faint even with normal blood pressure and this occurs most commonly after exertion.  I live on the 3rd floor and frequently faint after climbing the stairs to get home.
• Chronic insomnia and am always so exhausted.
• Chronic pain.
• Delayed gastric emptying, which leads to big problems with constipation such that I'm on permanent laxatives.

From reading posts here, it seems that all of this is part of dysautonomia.  However, I've not got a specialist taking care of anything.  I see a urologist for the bladder issues, a pain specialist, and my general doctor hands out the Florinef to keep my blood pressure up.  I was supposed to see a POTS specialist but turned down the referral because I couldn't face traveling to the center, which is several hours' drive away.  Thinking now that I made the wrong decision there.

I'd just love to hear that I'm very definitely not alone.  I have no family, live on my own, and am just feeling so lost with all of this.  Been crying tonight because I don't know how to manage it all.  I need to know that there is 'life' in amongst all of this and at the minute I just feel like I'm being betrayed by my own body.  I used to climb mountains and now I have days when I can't even climb out of bed. 

[StayAtHomeMom]

I travel 3 hours one way to see my POTS specialist. He works with me as best he can so I can do what I can while there and do some tests in my home town. 

POTS can sometimes be hard. It is hard to have your body tell you no. And to feel alone because you have such an uncommon disease is harder. 

But it does get better. Sometimes you just have to stand up (or sit up ) and brush yourself off. 

I think my POTS is a milder version so it doesn't bother me as bad as some. I suspect I have had since I was a teenager just can't prove it. (When I was 15 my normal sitting heart rate was high 90s.) It reared its ugly head 3 years ago and in the beginning it was bad. Couldn't drive. Couldn't stand. But as I was trying to figure out what was wrong with me I was naturally doing what is supposed to help. I craved salt so I ate it. Tons of salt. Lots of water. And things got better. 

As I have found doctors that believed me and started finding answers I have gotten better. Through trial and error I have found the med combo that works for me. And as long as I stay aware of my limits and triggers I do OK. 

If I were you I would see that specialist. Depending on where you are from and your insurance they can actually give you a ride to where you need to be so that you don't have to drive it. 

For me finding answers was my path to getting my life back. I am sure for others it is different. Autonomic dysfunction is such a varied issue. So many things can cause it and there are so many different types. Sending positive thoughts your way. I hope things get better for you. 💪

[Mama Sarah]

Thanks StayAtHomeMom.

I'm actually in the UK and am eligible for Patient Transport to get to distant hospitals.  I'm using them to see my urologist next week.  I just got overwhelmed at the time they suggested it because I was already seeing specialists at 4 different hospitals and finding all the traveling really tough.  It was probably a bit of a resistance to the necessity of it ("I don't want my life to be like this")  I think I do need to request a referral now if a POTS specialist would be able to help.

The only meds I take for this are the Florinef to raise my BP,  Lyrica and morphine for pain, and Hyoscine for bladder spasms (I can't take the more effective anti-spasmodic meds because they send my HR soaring).  Currently waiting on some CBD oil to see if I can use it to reduce my opiate use.

I think I'm too often in 'tantrum' mode.  When I know I should stand up, brush myself off and get back out there but actually want to sit on the floor and scream.

I think I agree that getting answers to all this will help me find a way through.  I do cope better if I understand what's going on.  It's difficult when you feel like your body is not doing what you tell it to do, like it doesn't actually belong to me.  My brain says we're climbing the mountain today and my body says it's staying in bed!

[zerohours000]

4 hours ago, Mama Sarah said:

I'm new to the forum and stumbled across it when Googling for advice.

I have:

• POTS, with tachycardia and low BP that can occur randomly, even when I'm lying down.
• Neurogenic bladder and currently have a supra-pubic catheter although I'm seeing a surgeon next week about potentially getting a Mitrofanoff Conduit.
• That incredible ability to faint even with normal blood pressure and this occurs most commonly after exertion.  I live on the 3rd floor and frequently faint after climbing the stairs to get home.
• Chronic insomnia and am always so exhausted.
• Chronic pain.
• Delayed gastric emptying, which leads to big problems with constipation such that I'm on permanent laxatives.

From reading posts here, it seems that all of this is part of dysautonomia.  However, I've not got a specialist taking care of anything.  I see a urologist for the bladder issues, a pain specialist, and my general doctor hands out the Florinef to keep my blood pressure up.  I was supposed to see a POTS specialist but turned down the referral because I couldn't face traveling to the center, which is several hours' drive away.  Thinking now that I made the wrong decision there.

I'd just love to hear that I'm very definitely not alone.  I have no family, live on my own, and am just feeling so lost with all of this.  Been crying tonight because I don't know how to manage it all.  I need to know that there is 'life' in amongst all of this and at the minute I just feel like I'm being betrayed by my own body.  I used to climb mountains and now I have days when I can't even climb out of bed. 

Definitely not alone.  I don’t have the full array of symptoms.  But enough of them.  What you’re saying speaks to everyone, no matter the array or spectrum.  I might very well indeed develop POTS...though I don’t currently have it.  There is life amongst all this.  I’m maybe a poor example because Ive dealt with it all without much grace.  

Others might tell you this but you need to find ways to fight back, even if just a little.  Show your body who it really belongs to.  If it’s getting up to make coffee...then except that task as your new mountain.  I wasn’t bedridden but I’ve lost my primary job (used to work two and commute 4 hours a day).  I was impaired cognitively and emotionally and somewhat physicallly.  

I can’t give you much advice for managing symptoms but there is a wealth of experience and knowledge on this site.  You’re gonna learn a lot because many have gone through exactly your state of mind and your predicament.  It’s unfair, it’s dehumanizing, and it humbles everyone.  I feel sick to my core that I was “fine” 4 months ago and now I’m stuck in a place where every day is not a gift; it feels more like a sentence someone handed down for a crime a I didn’t know I committed.  I’ve been retracing my steps for my lost life like a post pair of keys. But sometimes the keys are in your hand in the very end.  It doesn’t feel that way right because everyone at some point here has felt utterly robbed of something: our certainty (peace of mind); out comfort; and those awesome moments where one can’t wait for the future or even looking forward to something. I used to look forward to so much and now I’ve really tempered my expectations of normalcy.  I still have goals but they’re no longer independent of limitations.  They’re welded to them now.  

I hope you improve and continue to improve (that is the acceptance I myself continue to work: modifying my goals as MY goals and no other standard).  

You can do it.

Best,

Zer0

[Iheartfrogs217]

Hi Mama Sarah, I am so sorry that you are feeling so sick. Please know that you are not alone! I'm 21, was an athlete before my symptoms kicked in, and am experiencing a lot of the same things that you are. I know it's extremely difficult to not be able to do the things that you once were able to do. Allow yourself to grieve, and when you're ready, figure out ways to cope and channel energy into new hobbies. I went from loving to play sports, to finding out that I love to do crafts and read. Even though it may feel like your life is over, it's not. It's just time to figure out how to live it differently. When you need someone to vent to I'm always here and lots of other members are here too. There are a lot of wonderful people on this forum who are willing to listen.  

[blizzard2014]

4 hours ago, zerohours000 said:

Definitely not alone.  I don’t have the full array of symptoms.  But enough of them.  What you’re saying speaks to everyone, no matter the array or spectrum.  I might very well indeed develop POTS...though I don’t currently have it.  There is life amongst all this.  I’m maybe a poor example because Ive dealt with it all without much grace.  

Others might tell you this but you need to find ways to fight back, even if just a little.  Show your body who it really belongs to.  If it’s getting up to make coffee...then except that task as your new mountain.  I wasn’t bedridden but I’ve lost my primary job (used to work two and commute 4 hours a day).  I was impaired cognitively and emotionally and somewhat physicallly.  

I can’t give you much advice for managing symptoms but there is a wealth of experience and knowledge on this site.  You’re gonna learn a lot because many have gone through exactly your state of mind and your predicament.  It’s unfair, it’s dehumanizing, and it humbles everyone.  I feel sick to my core that I was “fine” 4 months ago and now I’m stuck in a place where every day is not a gift; it feels more like a sentence someone handed down for a crime a I didn’t know I committed.  I’ve been retracing my steps for my lost life like a post pair of keys. But sometimes the keys are in your hand in the very end.  It doesn’t feel that way right because everyone at some point here has felt utterly robbed of something: our certainty (peace of mind); out comfort; and those awesome moments where one can’t wait for the future or even looking forward to something. I used to look forward to so much and now I’ve really tempered my expectations of normalcy.  I still have goals but they’re no longer independent of limitations.  They’re welded to them now.  

I hope you improve and continue to improve (that is the acceptance I myself continue to work: modifying my goals as MY goals and no other standard).  

You can do it.

Best,

Zer0

Zero. I can one up you on the not dealing with this gracefully and Monday morning quarter backing the incident that first kicked off my current decline in physical health. While my Dysautonomia has begun to really screw with me in more recent months. I first became semi-disabled after a work related accident. I fell off the back of my delivery truck in November of 2011 and obtained what I can only describe as a sprained ankle. I immediately developed a limp and five months later, said limp got so bad I could no longer walk. I had to be carried into the ER where I was diagnosed with an extensive DVT in my injured leg and bilateral saddle pulmonary embolism. It took me a few months to be able to walk normally again, but even 7 years later I can no longer climb stairs normally. I have to climb with my left leg and drag the right leg behind it. I still get angry and occasionally punch holes in doors when I think about how much this 15 second fall from my truck has robbed me of my health and ability to do the job I love. I used to drive for 26 hours straight with 3 15 minute fuel stops and maybe 1 30 minute nap in a parking lot. Now I get petered out just driving 40 minutes one way on Sat and Sun for my part time job. Merely working 12 hours a week is killing me more than working 7 days a week driving 800 miles a day as a truck driver did. Any how, to the original poster. It is ok to be in pout mode. You lost a part of your life. But you will figure out how to transform yourself and evolve. All we can do is evolve. If you can no longer climb mountains, you will climb hills instead and learn how to make the best out of what you have been given. I literally spent 5 straight years sitting on a couch in anger, denial, and pout mode. I was not receptive to any advice. It wasn't until last summer that I applied for a job and forced myself to get out there and to break out of my funk. Now I work three days a week and go into recovery/pout mode for the other four. Things do get better. And while not optimal, you will get used to your new normal and have a life. Hang in there. I hope you feel better soon.

[Pistol]

I am disabled from POTS for 5 years now and before that fought like a bear to stay in my job. It took me years to accept my diagnosis. In the beginning I thought it's gonna get better if I just hang in there and force my body to do what I needed it to do ( which in return made my POTS much worse ). I went through all of the stages of grief and currently have found acceptance of my limitations ( I no longer wish to do things I can't and celebrate the things I can do ). Having said that - the times of anger, resentment and self-pity still come. And when they do I have a cure: I am blessed with very good friends who I call in those times and just whine their ears off. One after the other. They listen, make me laugh and then say: " Are you done? Can I get back to cooking?" And after those phone calls I feel like I just took a long " soul-shower" and the world looks bright again. Venting is the best thing for those moments - in order to have the strength to deal with our condition we must allow ourselves to be weak, freely and unashamed. --- I wish you these friends too but if you currently do not feel like there is anyone - I have the time and the experience, message me and let it rip!!!

[bombsh3ll]

Hello and welcome. I'm sorry to hear you are suffering so much, and it feels so lonely, but you are not alone and in good company here. I'm in the UK too & developed severe POTS very suddenly coming up for 4 years ago, having previously been completely healthy. I do have a family, but it is bittersweet because I wouldn't have had children if I had known I was going to become disabled and unable to care for them at such young ages. 

I would say definitely take up the referral to a POTS specialist, NOW before it gets taken off the cards, you know what the NHS is like! I live in Scotland so have no access to specialist care at all as there are no autonomic specialists north of the border and it is a fight to get funding to be seen in an English hospital. I traveled to Newcastle last year to get a diagnosis which was helpful in making me feel validated and vindicated after being fobbed off many times and assigned erroneous psychological diagnoses, but it has not helped me get any treatment. 

I am a GP myself and have been able to obtain trials of all relevant oral medication but unfortunately as yet none has helped. 

I do hope you manage to find some relief. It is hard to get up every day and force yourself to keep going. We are all so strong and brave to deal with this. I look back on my old life and hate how I took things like standing up or having a shower so for granted!

Hugs,

B x

 

[Potsie1990]

Hugs