New Here, can't cope.

[Guest CyberPixie]

Hi All,

Have known I have autonomic dysfunction for 4yrs due to Ehlers-Danlos Syndrome type 3. Also have severe M.E as well as other things. Am mostly bedbound.

This last 7mths have been ****. Have had breathlessness and trouble breathing, as if my chest is weak and I have to force myself to breathe as it feels like my breathing will stop. I get it at rest as well as on standing. Have very bad heart pounding/racing at rest as well as standing. Severe weakness, tiredness, lightheadedness. Numbness in whole body so I can't feel my body (this normal for POTS?) At times heart rate slows right down and breathing becomes very shallow and weak (mostly at night) Some nights I temporarily stop breathing and wake gasping.

For 3mths I was unable to move and was so out of it I wasnt aware of who I was, time passing, couldnt concentrate on anything anyone said to me, I felt like I was going to go unconcious. (Is that POTS?)

I am being investigated for Addison's Disease too.

Recently saw an endocrinologist who also deals with POTS, he advised me to up my caffeine intake as he's just done a trial on it and says it helps with POTs. It seems to lift the tiredness but apart from that doesnt do much else. Am also on florinef which helps a little.

Basically I'm having trouble coping with all this. On the worst days (today being one of them) I have no idea how I can live like this. I'm only 28. I can barely get to the toilet. I'm normally a very ambitious, driven person and I dont want to stay in bed the rest of my life, I have things to do!

I'm worried about the connection with heart problems such as mitral valve prolapse as I have EDS as well, the endocrinologist didnt seem too worried.

Also, can you stop breathing with POTS as my breathing side of it is bad?

Just need some reassurance and to reach out to others with this horrendous condition.

[baby_boy]

This must be awful for you and i really feel for you, i really hope you can get better.

At times heart rate slows right down and breathing becomes very shallow and weak (mostly at night) Some nights I temporarily stop breathing and wake gasping.

The weakness happens to me at night and i used to stop breathing. I have had episodes recently were breathing is shallow and HR is low. I dont have trouble with breathing as myne is anxiety related but i have had the gasping for breath at night.

Do you awake with a slow HR at night? Just a question as i have this alot!

I think for me i feel weak all the time becuase im down and depresed, i have no money, cant get on with my life ect....and im only 21. I do find if i go to the gym and exersise i feel alot better, but as i said i have no money. Im not sure if this will help you but i can imagine you must be depressed and so sick of life. All i can offer you is can you find something that will make you feel a tiny bit better. I know you condition is worse then mine, but i find that if i find something to make me feel better, i start to feel better in myself and do more things.

Lol, sorry for gaggin. Hope you get well soon

[Lukkychrm42]

Hi,

First of all, I'm so sorry you're having such a rough time. We're here whenever you need us!

I don't have EDS, but there are several here who do.

Most of us have sleep problems, and I believe that sleap apnea is very common among us. For some it's a more serious problem than for others. So I'd think it's a safe bet that it's related to dysautonomia.

As for breathing when you're awake, a lot of us have that problem, too. For me, I find that I don't seem to take in enough oxygen when I breathe and end up yawning almost constantly- and even then can't catch a full breath. I breathe only 5 times per minute because i have very large (singer's) lungs, but then sometimes it's also hard to breathe- like you're straining to fill your lungs with air and it's just not working. I don't know how exactly this all relates, but it's such a common problem for us that it must be there somewhere.

As for the 3 months where you were feeling unconscious- I don't know about that- but I'm glad you made it to where you are now at least!!

Heart problems: do you have an actual defect of your heart (is it safe to assume that you have had an echo?)? The only real problem with MVP is that it can lead to dysautonomia, so it's not a big deal in itself, but what it causes obviously is quite problematic! For those of us without a defct or MVP, the problem with POTS is a wiring issue- it's not of the heart itself, but what's controlling its function.

Again, I don't have EDS or ME, so I don't know how they might be related to the problems you're having, but I wish you all the best and I hope you find some good doctors to help you.

[ben_uk]

Hi, sorry to hear about the rough time you are having.

I am also going through a really bad patch.

I have EXACTLY the same breathing problems as you and all the doctors so far have said it is anxiety (yeah, right)

I am seeing a neurologist tomorrow and I will be telling him about all my symptoms.

Have you seen a neurologist?

Hope you have a better day today.

Ben

[Ianankatie]

I am so sorry you are feeling so bad. I know how difficult it is to cope and adapt when you are so young. Unfortunately I don't really have any great advise for you but I just wanted to let you know that you are not alone and I really hope that things begin to improve soon.

I also suffer with breathing difficulties though not as bad as you. Have you looked into having oxygen at home? Many people have found that it really helps. There is a topic on the NDFR about breathing troubles related to POTS and things that can help. It is worth checking that out. I have also used salbutamol (asthma treatment) in the past to open up my airways and help me breath. I am going to see a doctor about this on Monday so I will let you know if they have anything else that may help.

Good luck, keep smiling, things will get better.

Katie

[Ernie]

HI,

Welcome to our little corner!

I have breathing problems mostly when I strain.

When I faint I stop breathing.

It takes a while to get adjusted to your "new" body and to find the right combinatio of meds. You will get there. Believe me.

[ben_uk]

Hi Katie

Hope you are ok.

You mentioned that there is a topic on NDFR relating to breathing problems.

Please could you tell me where about on the website I can find it? I looked but had no luck,

Thanks!

Ben

[Ianankatie]

Hi Ben

Computors really are not my strong point. I think I have just copied a link to the topic on the NDRF (I hope its okay for me to do that).

http://216.149.163.247/ubb/Forum1/HTML/006300.html

If that doesn't work the topic is called 'POTS, any breathing problems?' You may find it easier to bring it up by going on the search and searching under topics by my user name 'ianankatie'. I think it is near the bottom of the list. Another good search is just to look up oxygen.

Hope that works!!

Katie

ps- Good luck tomorrow with Prof Mathias!!

[ben_uk]

Thanks very much Katie for the information and also your good wishes.

I will let you know how I get on.

Ben

[Aprilmarie52]

Just wanted to say welcome and I hope you feel better soon. Caffeine makes me feel horrible personally.

[Mrs. Glass]

Hi , I know that it is scary, and frustrating when a person has been so active and then all of a sudden they can barely get out of bed. I am new to this I have just been diagnosed. What my PCP told me is to learn meditation, it will help to relieve some of the anxiety. Our medical problems may not go away, but we can help ourselves to try to cope with it. What I do is either get in a bubble bath or lie in bed with my eyes closed and I concentrate on my faith. I draw my strength from my God. and before I know it the anxiety attack is gone. I know that I am new to this being sick all of the time, but I am going to fight it with everything that I have. I am not going to let it take me over. The one thing that I think that I hate the most is not being able to enjoy a meal. No matter what I put in my stomach, I bloat up and my stomach hurts, but I am going to try different foods to see if some hurt less then others. You hang in there, and fight this thing. Make your mind strong, it is our best defense. Vanessa

Hi All,

Have known I have autonomic dysfunction for 4yrs due to Ehlers-Danlos Syndrome type 3. Also have severe M.E as well as other things. Am mostly bedbound.

This last 7mths have been ****. Have had breathlessness and trouble breathing, as if my chest is weak and I have to force myself to breathe as it feels like my breathing will stop. I get it at rest as well as on standing. Have very bad heart pounding/racing at rest as well as standing. Severe weakness, tiredness, lightheadedness. Numbness in whole body so I can't feel my body (this normal for POTS?) At times heart rate slows right down and breathing becomes very shallow and weak (mostly at night) Some nights I temporarily stop breathing and wake gasping.

For 3mths I was unable to move and was so out of it I wasnt aware of who I was, time passing, couldnt concentrate on anything anyone said to me, I felt like I was going to go unconcious. (Is that POTS?)

I am being investigated for Addison's Disease too.

Recently saw an endocrinologist who also deals with POTS, he advised me to up my caffeine intake as he's just done a trial on it and says it helps with POTs. It seems to lift the tiredness but apart from that doesnt do much else. Am also on florinef which helps a little.

Basically I'm having trouble coping with all this. On the worst days (today being one of them) I have no idea how I can live like this. I'm only 28. I can barely get to the toilet. I'm normally a very ambitious, driven person and I dont want to stay in bed the rest of my life, I have things to do!

I'm worried about the connection with heart problems such as mitral valve prolapse as I have EDS as well, the endocrinologist didnt seem too worried.

Also, can you stop breathing with POTS as my breathing side of it is bad?

Just need some reassurance and to reach out to others with this horrendous condition.

<{POST_SNAPBACK}>

[Dizzy Dame]

Hi cyberpixie,

I don't have EDS, just a random case of POTS (it moved in one day and never left). I've had times where I can't get out of bed for days, and it's been very difficult adjusting to my new, not-so-improved body. This forum has really helped me, as well as simply believing that one day I will get better. Perhaps it's a false hope, but I wouldn't be able to cope knowing THIS is how it's going to be.

I also have breathing problems. No one's been able to figure them out, but I've noticed that I feel like I can't breathe when my heart rate is either too low, or my blood pressure is too low. I think my brain isn't getting enouth 02, so it sends a message that I need to breathe more (in my own layman's opinion).

I really hope you find some solace here, and that your doc's can figure out a treatment plan that allows you more activity.

take care,

Lauren

[Guest CyberPixie]

Nice to see so many replies and a warm welcome

I'll try and answer everyone!

I saw a neurologist about 4yrs ago. All he suggested was graded excercise which just made me worse! I try to stay upright even though I'm in bed, seems to help more than laying down, though when I'm really bad I physically can't sit up and have to lay down.

I have a very strong character and believe it or not, no depression! I'm a real fighter. Saying that though, of course the bad days make me feel low but as soon as I feel a bit better I bounce back and am happy again.

I just don't know how I can live with all this severe heart racing/pounding/erratic and breathing thing. For some reason it's always worse around 4-7pm. It's just so scary and I have so much to offer the world and can't believe I may not get to do any of it. I don't want to be stuck in bed the rest of my life!

Oxygen - I ended up in A&E (ER to those in US I believe) at one point, though they sent me home because they had no idea what was going on, didn't help I had a just qualified Dr just out of nappies either they gave me some oxygen but didnt improve the breathing though the thing they put on your finger to check oxygen supply to the brain showed it was getting through.

They also did a quick heart trace and they didnt say if it was ok or not, so I assume it was. Sure they wouldn't have let me go if it wasnt. Though at the time the heart pounding/racing was calmer.

I have mild Asthma, I find that the salbutamol starts off the heart racing/pounding sometimes

Yep, slow HR at night, though not every night. Often comes with the numbness/light feeling in my body and I feel hyper-aware of things as if I'll start hallucinating. (Though one Dr said it could be adrenal problems, this hyper aware thing).

I hate going to bed, waking up every hour and I always worry I wont wake up again in the morning.

Due to see the endo in about 3-4wks, will be armed with more questions. Really think my heart should be checked out properly and maybe ask to see a neurologist too.

I do get times of anxiety though seems to be a lot better since I started on Florinef and I'm on prednisolone at the moment too. (Though there's still a question mark on whether I have Addison's disease, due to have an ACTH test soon).

Think I have replied to everyone, if I left anyone out, sorry!

Oh and does anyone get a sort of numbness feeling in their throat and mouth? I keep getting it.

[Miriam Poorman-Knox]

Welcome

Sorry this is a "pots hole" for you. I would suggest that you sepulmonologist (lung) Dr. ASAP. They can have someone come to your home and put a "pulse Oxomet" on you finger, and it will register you O2 levels. Long story, this has helped me immensely. Blessings... Miriam e a

[steamship]

I have tried below to post a link about fatigue and EDS be medicated by autonomic dysfunction.

I found it quite interesting, an its spurred me on to get my dysfunction investigated as a possible way of dealing with the terrible fatigue. I have EDS III.

http://www.cfids.org/archives/2004/summer-issue.pdf

You need to open the pdf and look for the article by Alan Pocinki on 'joint hypermobility and the link with CFID's.

You may find the bit on p12 about being woken up at night short of breath with heart racing and this being diagnosed as anxiety interesting.

[Guest CyberPixie]

I have tried below to post a link about fatigue and EDS be medicated by autonomic dysfunction.

I found it quite interesting, an its spurred me on to get my dysfunction investigated as a possible way of dealing with the terrible fatigue.  I have EDS III.

http://www.cfids.org/archives/2004/summer-issue.pdf

You need to open the pdf and look for the article by Alan Pocinki on 'joint hypermobility and the link with CFID's.

You may find the bit on p12 about being woken up at night short of breath with heart racing and this being diagnosed as anxiety interesting.

<{POST_SNAPBACK}>

Thats really interesting. Thanks for that.

[Guest Julia59]

Welcome to the group!

I agree with Miriam----you should see a pulminologist. Maybe have a sleep study done. I still have not completed mine----I couldn't get to sleep. I had a ton of anxiety for some reason. I do have a prescription for klonopin---but haven't filled it yet. If anything, I may fill it just to get through the study.

Breathing problems are a big deal---and they should be taken seriously by your physician. Unfortunately some Docs view POTS as a disorder that isn't very serious----but they are wrong. Yes, some may have a milder case of it, but there are many with complications like yours that need to be taken seriously.

There isn't enough education on ANS dysfunction----and many medical professionals don't realize how much dysautonomia can affect the vital functions of the body.

(Steamship-----I loved reading that CFS newsletter.

AS you can see the diagnosis below--on the signature line---The NSG at the Cleveland Clinic has also added the diagnosis of CFS and fibromyalgia.

it was very interesting to see the EDS III connection. I fit all the criteria listed in that article. I am on a waiting list for the EDS study at NIH. It is amazing on how all this relates together--THE CFS---EDS---FIBROMYALGIA----ANS DYSFUNCTION)

I hope you get better control of your symptoms so you can at least get out of bed and function----you may not be perfect, but with the right medication combo you can get pretty close----------

Sending you a BIG HUG

Julie :0)

[Miriam Poorman-Knox]

Just saw my previous post!!!!!!!!!!!!!!!!!!!!!!!!what a yahoo. Its not sexpulm...

just Pulmonary Doc..... Miriam

[momofpreciousboy]

Don't have time now to type much. Go to search and look under my posts under momofpreciousboy. We sound very similiar. I too would wake up gasping. and could not breathe. Complete with not being able to swallow, throat tightning, ect. What really helped me was propanolol. Something about adrenaline causes muscles to constrict or it does something with the oxygen in the muscles. Adrenaline release was coming from stress of standing/ heart rate. I will try to reply again soon. JenniferTX

[Evie]

Hi! welcome to the site.

Im sorry to hear about your situation... not being able to fullfill ambition is tough to handle (as most of us on here understand).

[Guest CyberPixie]

Don't have time now to type much.  Go to search and look under my posts under momofpreciousboy.  We sound very similiar.  I too would wake up gasping.  and could not breathe.  Complete with not being able to swallow, throat tightning, ect.  What really helped me was propanolol.  Something about adrenaline causes muscles to constrict or it does something with the oxygen in the muscles.  Adrenaline release was coming from stress of standing/ heart rate.  I will try to reply again soon.  JenniferTX

<{POST_SNAPBACK}>

I've tried proponolol and it made the low blood pressure worse for me. Couldnt stand up due to the lightheadedness. I do get times where I feel I have too much adrenaline, I get this massive urge to get up and do things yet physically feel exhausted. Stupid illness!

[momofpreciousboy]

Let me just say that I have to constantly work to keep up the bp--salt, drinking all the time. When I was so sick, I could not even get on the computer. I could go for days without sleeping and actually felt better if I did not sleep. The sleep apnea if that is what it is is terrible. I never thought I would wake up alive. It was just awful and would wake me up. When I would start to go to sleep, if would feel like my chest would just sink and sink and I could not inhale. I really felt like I was fading out of this world. Just horrible horrible times. It really could not have gotten any lower. Maybe you will find that another beta blocker will help. Best of luck and I hope you find someone to help you. It took me forever. JenniferTX

[Sunfish]

hi -

welcome! i'm sorry you have reason to be here but am glad you found us...i know the forum is a big help for many of us when it comes to coping/support.

i'm just short of 26 so am in a similar place age wise and as much as another can understand what you mean in terms of frustration. there are ups & downs but it's definitely tough.

hang in there,

melissa

[calypso]

I can't breathe since my POTS started either. I don't think it's all that common here; there seem to be a select unlucky few who have breathing difficulties. I am going to have a more advanced pulmonary test done, but I've already had a pulse ox check, a basic pulmonary function test, a chest CT scan, a chest X-ray and a whole lot of listening to my lungs by various doctors. They have found nothing wrong so far, and one of my doctors told me last week he thinks my breathing problem is "subjective" -- a nice way to say I am noticing myself breathing and paying too much attention to it, therefore affecting it mentally. I really don't think the problem is subjective, because I get out of breath from talking, even when I'm not thinking about breathing!

Amy

[Evie]

Calypso, Have they checked for asthma? sorry i realise that sounds really darn obvious but you never know. I suppose with all those tests they would of.

I find i hold my breath when i do things where i have to concentrate. I vaccumed yesterday and got dizzy and realised i was holding my breath. So now i pay alot of attention to my breating too! ... we can be subjective together

I have found the muscles around my chest get really tight so it takes alot of energy for me to take breaths when my mucles are weak and tight. Massage of the lungs/shoulders/sides really makes the world of difference for me. I realise it may just be my wierd body but thought i shuold mention it just in case for some reason it did help you.