Just diagnosed, lots of questions.

[James]

Firstly I apologise for the length of this, but it feels good to get it off my chest, secondly my knowledge of POTS is rather limited (a few hours research) and thirdly it is 4 am and I am so tired I can’t get to sleep.

I have just been diagnosed with POTS after 4-5 years of symptoms. I left the doctor's quite relieved that I finally had a diagnosis, after numerous doctors told me there was nothing wrong with me and I was just mad, I was even given referrals to see a psychiatrist. I decided to do some research into POTS and came across this site, however it seems to have provided me with more questions than answers and I want to go back to the doctor armed with information. I guess the best thing to do is to write a brief background of my problems and symptoms and then put my questions at the end.

I am 23 and I suffer from Osteogenesis Imperfecta (Brittle Bones), which was diagnosed at birth. My symptoms relating to POTS started 4 or 5 years ago. I would get dizzy spells when standing, these started being very short, only a matter of a few seconds, they got more frequent and prolonged over the next few years. From here on it's hard to remember the sequence of when symptoms started, so I may get things in the wrong order.

I got a continual feeling of light-headedness that got worse over time and it was different from the dizzy spells as it didn't have any effect on my balance, this would often make me feel quite spaced out and I felt like I had lost my memory and had to remind myself of everything. It continues to this day and on a good day I don't really notice it, but it is always there.

There are times of the day when I feel really awful yet can’t put my finger on why I feel awful or what my symptoms are. This is the hardest thing to explain in the world as even I’m not sure what I feel like, these episodes can last a few hours or a few days.

I developed chest pains, often in the evening or at night, this could be accompanied by a twitching chest (I'm not sure whether it's my heart as I've never been monitored when it happens). It doesn't make me feel any worse. I often get a thumping heart where I can hear and feel my pulse (and if I stare at something light my vision pulsates). It sometimes feels as if I get palpitations and an irregular and raised heart rate, again this has not been monitored.

I get a bad headache maybe every couple of weeks and display migraine symptoms such as odd things with my vision much more frequently. This is mainly what mislead the doctors as they concluded I had vestibular migraine, however the treatments they suggested were completely ineffective. Incidentally when I have a headache (lasts about half a day) I display almost no other symptoms, other than the constant light-headedness.

I get attacks, often during exercise where I feel so bad I just have to sit down/lie down on the floor, I feel like I am about to pass out any second, but never actually have. Strangely when I was being treated for migraines with propanolol and sanomigraine these attacks became less severe and less frequent. While exercise generally makes me feel bad, the next day I will often feel quite good. I go and watch my football (soccer) team every couple of weeks and there is 196 steps to my seat (I’ve had plenty of time to count them, it can sometimes take me 45 minutes to get to my seat). I know the ambulance men there quite well now and they can’t understand why I put myself through the ordeal for every match.

I feel much worse when I a hungry, when the symptoms were worsening a couple of years ago I put on 2 stone (28 pounds) in 3 months as eating alleviated symptoms. Often I will feel bad for an hour or so after eating, but then I am alright until I get hungry again. I have lost his and a bit more now, although I am still slightly overweight. I developed the odd bout of diarrhoea, it maybe occurs every few months, but I’ve never felt like I had an upset stomach or had nausea.

I have a real problem with loud low sounds, it makes me feel very uncomfortable, but I can’t quite describe the feeling. The underground car park at work is my worst nightmare it echoes car engines and I can’t avoid it. I am gradually getting more and more deaf in my right ear, it often crackles when I hear a high pitched sound.

My sleeping patterns have become very irregular. My normal sleeping now is maybe 3-4 hours in the evening then I won’t be able to sleep till at least 4am and I will wake up any time between 10am and 3pm. I can sleep anywhere from 2-16 hours a day.

I used to do a lot of driving, but I hardly drive at all now, and only ever when there is someone in the car to take over. I get a weird sensation when stopping that I am still moving forward, but only when driving, it never happens when I’m a passenger.

The latest symptom is that I feel really terrible when I take a shower, I can only bear 1-2 minutes at the most and it makes me feel awful for a couple of hours after. At least I’m saving water.

These are all the main symptoms (I think), there are lots of other things that happen, but have only happened a few times or aren’t that bad. I managed to right 13 A4 (letter) pages of symptoms for the doctors.

The doctor has diagnosed me with POTS, but he doesn’t think there is anything wrong with my autonomic nervous system, he feels the problems are to do with my poor levels of collagen due to my Osteogenesis Imperfecta. However, the few days I went in for the tests were probably the best few days I’d had in a long while. I managed to exercise without too many symptoms and didn’t feel too bad on the tilt table. Is the diagnosis plausible? Could it just be as I was having a good day the problems with my autonomic nervous system didn’t show?

If it isn’t anything to do with my Autonomic Nervous System does this mean I don’t have dysautonomia?

I have been told to try and control the symptoms through a high salt diet and exercise, which I have no problems trying, but are there any good tips of things I should try? What is the likelihood of it working?

It seems to me that most people here have other things along with POTS, is there anything worth looking at from the symptoms I have described? I’m not a hypochondriac, I just want to know the possibilities so I can go through anything with the doctor.

Does anyone have any information on this being linked to a collagen deficiency?

What are the long term prospects of POTS? Does it get better/worse through life?

Does doing things, like me going to football matches where I'm constantly feeling terrible and having to sit or lie down actually do you any harm? I know it's bad at the time, but am I making things worse for myslef in the future?

I’ve probably got a load more questions that I can’t think of now, but I appreciate any help or info you can provide. I’m sorry for the length of this post, but I’m not sure how to condense it much more.

[briarrose]

Welcome!

Dysautonomia is a frustrating illness that leaves you with more questions than answers. There is a great section above the forum discussion topics entitled Frequently asked questions, you will find plenty of helpful information there.

You talked about your Propranolol making you feel better. It is actually one of the more commonly recommended beta blockers suggested for POTS and it's also helpful for migraines.

As for the parking structure or noise difficulties, they say that Dysautonomia patients become very sensitive or Overly stimulated to noise/light.

Your comments about your sleep pattern are not at all unusual for most of us. It's another frustrating symptom.

Driving - I struggled with this for sometime. I would find that I would suddenly get so tired that I would need to pull over immediately to take a nap. I had to start carrying a pillow and blanket in the back seat and I also refused to drive my kids any distance from home. I find myself getting motion sickness in the car but normally when I'm looking out a side window.

They suggest that you DO NOT take hot showers as this does exacerbate your symptoms. Try to take a warm shower or possibly bath.

It would probably benefit you greatly to do some searches here about things you mentioned as they've all been mentioned before and nothing you said was unusual.

good luck

steph

[bttrflyamby1981]

wow,

your story is very much like my own. I don't think I asked my doctor any questions though, mostly because he addmitted to me that he didn't have any exsperience with POTS. He heard about it and I had alot of symptoms. I never asked for details and I'm kicking myself for it now.

My memmory is horrid and I sometimes have a hard time understanding the smallest of details.

Trying to sort things out can be a challenge.

I think at one point and time every one of us has been told it was all in our head. Your not alone. It sounds like you want to be aware of everything that can be connected to POTS. I think that's great! Don't let others that don't understand how scary it can be, tell you any different. It's ok to want to know what other possable symptoms might develope or even get better.

I'm new with this as well and I'm learning new things every day. I do know that everyone is different, some are less symptomatic then others. Meds. that I can take might make someone else feel worse. It's trial and error. You are starting out great by finding out what you can, asking questions.

As for wearing yourself out, we all do it. It sounds to me that it's worth it to you, and that's what counts.

I want to give up all the time because symptoms bring me to tears but I don't want POTS to tell me what I can and can't do. I used to run track and I was always at the top of the class (the role model).

Now I get frustrated not because I want to be at the top of the class but because I can't even do housework without getting dizzy. When I work out at the gym I work myself to tears. I walk instead of run when I've had enough. I have to stay close to a wall so I can hold myself up. I have good days and bad days.

Today has been a bad day. I do yoga every monday and today is the first day I almost passed out in this class. But I pushed myself through the dizziness and the foggy vision and finished the class.

Just venting a little, sorry.

Good luck in finding your answers.

Amber

[Ernie]

Hi,

Welcome aboard.

Like Steph mentioned there is a list of site that you can look at that will answer many of your questions. Just click on it and look around:

http://dinet.ipbhost.com/index.php?showtopic=1954

[persephone]

Hi James! Someone else British- there are mor and more of us on here! where are you? I'm at Oxford studying, I see Prof Mathias too. Andwe're almost the same age as I'm 24.

I can't answer your questions really just now- head's a bit fuzzy- but what you describe matched a lot of my own symptoms. I have a collgaen deficiency due to Ehlers Danlos, and my understanding is a lack of collagen makes your veins and arteries too losse, so that when you stand up they don't constricti properly. This means the blood pools in your legs, your head throbs, your heart races and your bp can bomb out.

That's what they seem to think may be happening to me, any way.

I'll send you a message soon!

[James]

Thanks for all the warm welcomes and info, I have been finding out more and more about this over the last 24 hours and was sure that one thing couldn't be responsible for all the symptoms I had, but it seems it can be.

The only thing I haven't been able to answer, and I guess I can't until I go back to the docs is exactly what I've been diagnosed with. I know I have POTS, but from what I was told this is not because of autonomic failure and therefore I don't think I have the underlying Dysautonomia or can you have Dysautonomia without an autonomic problem.

I have contacted a few Osteogenesis Imperfecta organisations around the world to see if they know of other OI people with POTS, if there are others they will hopefully have more information on POTS due to collagen deficiencies and I will post any useful info I find here.

Do any POTS people have exacerbated symptoms when they are hungry? as this is often when I feel my worst and I haven't found anything on these forums to support this. I have had Diabetes, thyroid problems, hypoglycemia and all the usual stuff ruled out.

Thanks again for all your help, I am much more knowledgeable now and hope to learn as much as possible to live with this.

[Lulu]

Welcome, James!

I know I'm not alone in saying your symptoms sound very familiar! It definitely sounds POTSy to me and POTS is definitely an autonomic nervous system disorder. Perhaps your doc misspoke? They're not infallible.

Here is another link you may find helpful:

http://www.ndrf.org/

and also:

http://www.medscape.com/viewarticle/522421_3

This is an article by Dr. Grubb, who is one of the preeminent researchers in the field as well as a wonderful physcian. You can read all about him on the forum, too. For this article, you need to get a login, but it is free to join. The article is extremely informative.

I would advise breaking off bits of info at a time. It can be very overwhelming. Things will get better for you the more you know and with treatment. This forum and its ppl are also an excellent resource and support system.

Glad to have you aboard

Peace and light,

Lulu