My Breaking Point.

[goodnuff77]

So been dealing with pots for about 3/12 years with increasing symptoms. Been to nuerolists, Cardiologist, Autoamunine specialist, gastro, ent. and luckly a faimly Doctor who has stuck by my side trying to do everything he can(though he's limited only being faimly practice). I'm now to a point where none of the meds are helping and the Dr's are unsure what to try next. I haven't been able to tollerate most meds and it seem's the meds I'm on now are the ones that dont give me side effects.( even though I get no relife from them) I have a wife of 13 years and two kids ages 4 and 7. My 7 year old is caliing me lazy because I'm unable to do certain activity's with her and my son told me yesturday That I'm going to die before he gets big because I'm at the Dr's to much. My wife is talking about leaving me because she cant handle the up's and downs of the illness. Also from my health I get frustrated so she say's she cant handle my moods. So my Dr put my on low dose anxiety meds to try to help. My wife says it mellows me out to much and makes me zombie like. So now she wants me to stop taking them. So I'm 34 cant drive or work due to the condition of my pots. Stuck in the house daily by myself mostly in bed. I cant exercise do to the OI and syncope and severe pooling in legs. My hands also swell and turn purple and give me limited mobility in them There's days I cant unscrew the tooth paste cap. Have trouble doing hobbies due to the shakes hand problems and effects from certain positions. I have syncope while sitting and laying down. Just at a complete loss. And so tired of hearing certain aillments cant be helped because it's pots related. It makes me really nervous with warm weather comming( symptoms worsen for me) I'm sure there are others in the same boat as me. Just curious if anyone has any idea's that would be helpful.

[issie]

goodnuff,

So sorry that you are so severly limited in what you can do. It is such a complex and complicated illness and it does wear on us emotionally. It's hard to be upbeat - when our bodies are so "down - beat". Having chronic illness is not something I think any of us will or have gotten used to. When our quality of life is so different than what it used to be - it is terribly hard to TRY to adjust.

I'm fortunate to not be a fainter. But, unfortunate in the fact that I've had POTS almost my entire life. I think back on my life and realize my first symptoms (that I remember) was around 8 years old - I'm now 52. So, that's a long time to be dealing with things. I think it may be easier for us that have had it so long - because this life is our normal. Although, I've had periods when I was a whole lot better than other times. But, for those who were relatively well and then POTS hits - it is most devastating. You aren't used to being kicked down and the adjustments are so much harder.

I'm not sure what meds you are able to take - but, at least you've found some that are not giving you bad side effects. I'm also very, super sensitive to meds. And haven't found very much that does help. I don't know if maybe this is a good thing or a bad one. At least we are tuned into our bodies enough to know when something isn't right for us. So many people, take things and have side effects from them, but continue to take them thinking they have to and that it must be doing some good - because, my goodness how bad would it be off of them - it it's this bad on them. But, it could be the meds making things worse - they just don't have it figured out. So, you can be glad that at least you can figure that part out.

It's hard when you are young and want to have a life and life seems to be elusive to you. People just don't understand how difficult it can be with POTS. Kids especially, that have all the energy in the world - or if not that much energy - just youth in general ----it's not possible for them to understand. They haven't experienced enough things in life to KNOW what they perceive to be reality. I know that hurt you - what your children said to you - but one day they will look back on this and understand better. But, life experience is just not there right now.

Have they figured out if you are pooling due to being vasodilated or vasoconstricted. You know - we can be to extremes in both directions. That would be good to know, because it could make a huge difference in your treatment and also your outcome. Maybe thats a direction your doctors could look at. I found that I'm vasoconstricted and using things to dilate rather than constrict is helping me. I'm using natural supplements at the moment and experimenting with this. I also found that compression hose - make me worse rather than better. It actually was causing some of my neuropathy problems. I haven't worn my compression hose for about 2 months and the feeling is coming back into my feet more. But, it also could just be a coincidence - because I recently also cut all grains out and I know that is helping too. But, with you're fainting it could be just the opposite and you need compression hose to keep your bp up. I have high bp's. Do you wear compression garments?

I know you have a port for saline infusions. Do you think that's helping? I know many swear by it. I think people seem to think its a temporary help. Some people are finding help with things like coconut water. It's supposed to help balance your electrolytes too.

I'm really kind of running out of ideas to throw at you. But, just wanted you to know that YOU'RE NOT ALONE - in this world. There are many of us right here and we DO understand. It's a daily fight - sometimes minute to minute. Just come on the site more and talk to people. It will give you a sense of belonging - in a world where most people don't understand. I know it's hard on our hands and fingers to type - I have EDS and really bad arthritis right now. But, I think typing limbers up my fingers and actually in the long run makes things better. I'm taking some anti-inflammatory type herbs right now and starting to get benefit from them. So, hoping as for pain things - I'm going in the right direction.

Just hang in there. Maybe, you need to change the anti-depression drug and see if you can find something that makes you less zoombie like. We have to look for hobbies we can do and try to keep our minds off ourselves and focused on other things. That way we can feel more productive and like we have a sense of accomplishment. Find something creative to do. I know you said you're mostly bed bound - but, there are things you can do. Get your wife to go get you some beads and start making her some beautiful jewlery. (Oh wait a minute, that's what I do. LOL) But, it's really fun and you'd be surprised when you are just learning and starting out - it's not as easy as you'd think to throw combinations of beads together and them look good. You can even have friends start saving broken things for you and turn them into other things. Even getting bags of the broken stuff from Goodwill and being creative with it. Find something that can give you joy and a sense of accomplishment. Maybe, take up painting - there may be an artist inside you that you haven't discovered yet.

Just "HANG IN THERE" - science is advancing every day. Hopefully, we're going to figure this out. Know you're being thought of - by me. Sending you a great big (((((((((((HUG))))))))))). Life will get better - I'm sure of it.

Issie

[abbyw]

I second Issie's post without all of the medical knowledge and supplement stuff

Just knowing that there are people out there who understand. Our families can't understand, because they've never felt it. It is a lonely feeling to feel like your body is quitting on you and you just want to feel better and your family is frustrated as well. But people here understand.

I know that sometimes explaining my frustration with my body and my inability to be a functioning wife helps my husband empathize more. To remind him that I am not choosing this, that I am grateful for everything he does and that I need his emotional support as well as the physical help. I think the appreciation goes a long way.

And as always, trying to keep ourselves and our minds busy with other things is always the best medicine.

Hoping you see real improvement soon!

Abby

[ramakentesh]

Sorry to hear your story. Seems very tough. I was like that for about a week in December but then the florinef and then licorice got me up and running. Hand and feet poolers traditionally do well on midodrine according to published work.

[goodnuff77]

Issie The port does help alot but only in the morning. Due to being hooked up to it for 8 hous at a time I try to save my day time and do it at night. to see my faimly. But it tends to wear off quickly after I start using urinating ( which is alot)

Ramma I tried Florinef but had lots of side effects and was taking off of it. I had My Dr appointment yesturday and talked to him about licorice root but he said it would affect my b/p to much. I take the saline for blood volume and to help b/p mixed with psudeophrine to raise b/p. Seem s to be the only things so far my body could handle. Midodrine was horriable on my body.

[issie]

I find that psudoephrine gives me really bad tremors. It increases ephrine levels and could bring on tacky. Do you find that to be the case with you? Midodrine was possibly one of the worst things I took too. Butchers broom seemed to be midodrine light. I didn't do well with either. But, I don't need to raise my bp either.

[goodnuff77]

With the psudoephrine like I said it feels like I'm only on it because my body could tollerate without bad side effects. I'm always tacky so I dont know. But my blood presure is ramining low while on it. Seems like my tacky is getting worse and I've been on the psudoephrine for about 2 years. Ohh and going back to compression socks. I cant wear them. They make my feet even colder to the point of being painful.

[Lemons2lemonade]

I agree that explaining your situation through other means helps others understand. My boyfriend, who has been very supportive during this, got the flu last week. He said, "do you feel this bad all the time?" I giggled and said basically only add a really fast heart rate and the feeling you get when someone jumps out at you-- over and over again. It got me to thinking that a high fever is a good way for me to describe day to day pots. You REALLY don't feel good and you get the weird brain feeling like you do with a fever, but you just aren't hot. And you have to function under these conditions. Sometimes I have my days with pots. Screaming and crying. Other days I am violent and frustrated. And then sometimes I am depressed and regretful. But none of these feelings are going to make my pots go away. I have learned that these feelings correlate with my symptom severity and also my stress. You should find something you enjoy doing that can help combat this. And remember sometimes a positive attitude can go a long way.

[issie]

Yeah, that was happening with me and compression and I started losing the feeling in my feet too and having shooting pains - like people say neuropathy feels. In fact, when the doctor stuck me with a needle - I didn't even feel it until he got up to my ankles. But, now starting to feel my toes again. I don't know if stopping the compression or stopping the grains is what made the difference. Maybe, both. But, something did.

Maybe the psuedo is making you worse??????

[issie]

I AGREE a positive attitude is the key. The glass can be half full or half empty - it's the preception of the person - and which way we choose to look at life and things.

[goodnuff77]

I try to be as positive as I can. But I'm sure many of us on the forum realize it's not always easy.

[issie]

I try to be as positive as I can. But I'm sure many of us on the forum realize it's not always easy.

I'll so AGREE with that!!! It's a constant struggle.

Issie

[Katybug]

goodnuff,

Have you tried any family counseling with a therapist that specializes in chronic illness? I am not married but even just staying with my mom and stepdad right now because of my illness, it takes a great deal to keep our relationships on track. It is a little easier with my mom because she also has chronic health issues so she can relate to me better than most and helps buffer issues with the stepdad. But, if your wife can't relate, maybe she needs help with learning how to deal. I wish you health and peace soon.

Katie

[ramakentesh]

I had My Dr appointment yesturday and talked to him about licorice root but he said it would affect my b/p to much

that's the point. it works the same way as florinef in some ways.

The spectrum of POTS is complicated - in NET there can be peripheral vasoconstriction over the entire body but cerebral and central reductions in sympathetic outflow. Confusing to understand and to treat... In Ang II there might be vasomotor failure - veins are fine but the nerves that push the blood up arent working properly. Or there could be a lack of vasoconstriction in the stomach with peripheral vasoconstriction to compensate.

[issie]

Rama,

Is there any way - test - or something that they can determine absolutely which of these is probable in each person?

Issie

[bellgirl]

I'll pray for you and your family....prayer always helps!! Sorry you are hurting physically and emotionally; it is never easy

[ramakentesh]

Not really. yet anyway. MIBG reuptake scan can show reduced NET or cardiac denervation and its impossible to tell which.

[goodnuff77]

Katybug my wife and I both do counsling. But Now we are looking into something for my kids. Maybe a counsler can explain my health issues to them better than I can and take away some of their fears. My counsler does specialize in cronic illness. But even she is confused by the complexity of pots. I think my wifes biggest problem is because I owned my own construction company and she was a stay at home mom. Now there's financial strain plus all of my limitations. I'm not the same person she married.

[issie]

goodnuf,

Maybe your body is not the same, but the inward person you are is the same. We seem to lose ourselves sometimes, when there are chronic illness - but, the real you is still there. You just have to re-find yourself. Hang In There! It just takes time. We tend to start defining ourselves by our illness - that's not who we are it's just a part of our lives - but, it's not us.

Issie

[jenglynn]

I'm so sorry Goodnuff. This year has been a struggle for me physically too. I'm a fainter and lots of injuries, concussions and cognitive problems from those. The Neuro Psych I see says that may contribute to my mood swings as anything else- but how do you know the difference? I really feel for you....

My husband and I have struggled a lot as well. I think he has Caregiver Fatigue and is tired of me being sick. Plain and simple. Sometimes he will be impossible for 2 days and then, he's fine again. I have x kids: ages 9-16. It is VERY hard on them. When I first started fainting, my little one thought I was dead. It took us some time to convince her I wake up. Unfortunately, they've seen a lot of the really bad head trauma too. The kids do counseling, so does my husband and I do too. But I'm thinking of switching (off topic- but she spends the whole hour asking questions about my "rare" diagnosis' because she fascinated by it so I'm constantly re- directing. 5 sessions so far- we are still discussing medical records and what this and that means)

I wish I had an easy answer. It's easy for ME to tell YOU to have a positive attitude. It sounds like maybe your meds are not working out at all. Coming on here may help. Vent away!!!!! I really wish I had a magic wand to fix this for you, for everyone of us, and me. My life has changed so much and I overheard my husband tell someone that he feels like he "lost his wife and doesn't know this person." that was last week and broke my heart. WHO am I then? But you still have purpose, value and worth as a human being, husband and parent. I will pray you find the right protocol to help you improve. I tried a combo of an antidepressant- Paxil because I was needing Serotonin and Adderall because I was needing dopamine- not saying YOU should do this- but for me it improved my mood, anxiety, and concentration/brain fog by about 80%! Good luck- I will be thinking of you and praying for strength and your wife and praying for patience.

Jen

[issie]

Jen, so glad you found some things to help you some. It's so hard to find a good combination.

I feel so for both you and goodnuf - you both are having such a difficult time. Just know you both are being thought of and hoping for you both to find something, ANYTHING that will improve your lives.

Issie

[comfortzone]

Sometimes I wonder if I should just buy a hunk of land in the woods somewhere and never see a doctor again! I love my doctors to pieces - but I cannot always do what they ask effectively and I blame everything under the sun for my weaknesses - and 99% of the days pass in one frightful thing or another being the focus or issue causing me to not be able to exercise or to eat a certain way and on it goes.

So you wake up and wonder what the hugest issue is going to be.... will it be this pain or that pain - this blood pressure or that blood pressure - the hands or the arms - the legs or the feet - the neck or the back - always always it's something - neuropathy sure, OI- sure, EDS - sure.

Then when I feel good I am able to exercise - but this joint or that joint act up and it's back to a cane or walker.... though you look healthy as a horse. Not really sure what to make of it all....

It's hard to not focus on yourself and your body when it is literally screaming for attention all day everyday - like take pain meds quick - add a muscle relaxer maybe that will help - better lay down... Let's add magnesium and krill oil and a multi-vit... Who wants to wear compression hose anyway? Soon it will be 100plus degrees outside and hot as heck and arthritic hands that are hypermobile hate compression hose!

I need to find a job - I keep saying that - but who's going to hire someone on pain meds and frequent b/p changes causing OI - who probably shouldn't sit too long - nor stand too long nor anything too long!

That's when I get the idea that meds should come all by mail order - I should live miles from civilization and all it's trappings ... second Kimbellgirl's notion and become a person of prayer... a dysautonomic monk of sorts - or nun. That way I can suffer in silence perhaps away from anyone and everyone... Some days you just want to run screaming...

The other alternative is to learn acceptance to some degree I suppose --- maybe fighting it is just wrong.... So then you have no expectations and just take what the day brings with a grateful heart...lose the fear....lose the anger....lose anything outside of joy.... Wow that sounds like the life -- I can do that for a few minutes a day I suppose ....