Pain is destroying my life

[chronicallytired]

Hi guys,

For more than four years now I have been having episodes that entail me:

-feeling really dizzy

-shaking quite badly

-extreme disorientation

-flushed cheeks (feel like they're on fire!)

-often hard to eat/drink

-legs go weak, that's how I collapse, but then my whole body gives in.

-heart rate increases up to 140pm, and then I collapse, like I'm suddenly paralysed (this would last up to 10 minutes)

-sometimes will go mute during because it's all so overwhelming.

-cold fingertips

-breathing attacks, like a breath has gotten stuck

So these are the symptoms of my episodes before, where this would happen 3 time a month or so and the only constant factors I could definitely determine was stress and my period, most of the time it was completely random. They usually last from an hour to a day. I have been to see a cardiologist who said he didn't know and the blood tests etc all come back fine.

Then a while ago , (I can't remember how long ago; maybe around a year?) it took a turn for the worse where I was near bed ridden for two weeks and was scared to get up in case I collapsed. After that, they began to happen a little more frequently.

So I thought it couldn't possibly get worse; then one night I got up from my chair- no symptoms, and collapsed, where I was paralysed for a bit until I used all my strength to get myself onto my bed where I had a breathing attack where it felt like my breaths got stuck in my lungs. I then went to sit back in the chair for back support when I suddenly felt really dizzy, and lost control of my body a number of times.

If I tipped my head the slightest bit back, it jolted back and my whole body stiffened rigid, my eyes clenched, sometimes rolled back. Then if I tipped my head forward, then I would faint. Also it was really hard to keep my head still because it felt so heavy. This lasted two hours until I crawled to bed and exhausted, fell asleep.

So now these new episodes are an absolute mix. I've had many lately that include all the symptoms of the old ones but new symptoms like I pass out or insomnia which causes me to be exhausted etc, and it is happening randomly everywhere which is very overwhelming.

Disorientation or 'brain fog' has stayed as a constant factor for me which is deeply troubling as I often forget basic things, and I'm a senior high school student, I have important exams coming up and have failed multiple exams due to time wasted because I'm dealing with an episode, having an episode, or the continuous brain fog that is clouding my brain- I am forgetting a lot. I have just failed my mock exams this year and my exams last year due to this and because I do not have a diagnosis, I cannot get any help, and I also have no one able to support me which means I am navigating this on my own, often walking home from the doctors, or figuring bus and train times to the hospital. It's getting worse and I'm desperate.

I would greatly appreciate any thoughts, I've been through a journey of hell.

[Bevvy]

Really you need to be hounding your doctors to get answers. What are you parents/family doing to support you? It is quite clear something is going on. One thing I did wonder is have you seen a neurologist? What you are describing (to me a non medic) sounds like a seizure. This can either be physical or stress can even cause symptoms such as you describe. It could be worth keeping a daily diary to see if something is triggering these episodes.

[chronicallytired in reply to Bevvy]

My family will not help me in any way. I do try to keep a daily diary but have only found two factors that influence the episodes, most of the time it is completely random, but I haven't seen a neurologist!

[Bevvy in reply to chronicallytired]

Discuss with your gp but I would have thought a neurologist would be sensible way forward.Am incredibly sorry that at a young age you don’t have the support from your family. That must be incredibly difficult for you. Also are you in USA? I don’t know how much any insurance cover would be affected without parental support.

I hope that you can get to see some specialists and get some answers.

[chronicallytired in reply to Bevvy]

I live in the UK so medical bills won't be a problem thank goodness- thanks for your advice

[Trenholm in reply to chronicallytired]

Get your GP involved. Be as calm as you can. Write down what you want to say and any questions. Ask for a referral to a neurologist.

[cyberbarn]

I agree that you need to have a diagnosis and only medically trained people can do that. I hope you can get a doctor to take you seriously.

However, in the mean time, it might be worth looking up some of the symptoms of dysautonomia as some of what you describe could be down to that.

[chronicallytired in reply to cyberbarn]

Yes, my GP thought it might be POTS but my doctor dismissed it straight away saying "that's the diagnosis they put on anything"

[cyberbarn in reply to chronicallytired]

That is a shame, and misleading, because POTS has some very specific criteria, so therefore more easily diagnosed, but it is not the only dysautonomic condition. There are others and they should be looked at too.

[heatherevans28]

I'd check for POTs. You can do a basic test at home with a BP monitor to see if you meet the criteria before you push any further. Your GP can also do this for you at the surgery. It's very easy to rule out this way. If it is, then thankfully there's loads that you can do.

Either way, make sure you get support put in place for your exams. You can get extra time, and breaks during an exam if you have an episode. It can be so valuable. It also helps to have this on your record if you can't make it to the exam, so that your resit is classed as your first attempt.

All the best x

[Defenders]

So sorry you have all this to deal with! A question I ask most people is, ‘have you ever been prescribed the antibiotic Ciprofloxacin, or any other medication in the Quinolone family?’ These meds can cause most of your problems.

[chronicallytired in reply to Defenders]

Nope, haven't been prescribed anything like that :/

[SecretlyDisabled7]

Your doctor needs to send you to a neurologist immediately. You do not sound like a pain patient and you are too young to have a chronic pain syndrome. You need a neurologist. These are symptoms I have heard from patients who have neurological problems.

[Defenders]

Well that’s good to know. You need to keep harassing your doctors, they do have a duty of care! You will be pretty distressed which won’t help your situation so, easier said than done, calm yourself and start harassing your doctor. You need to be calm when you do so you will be taken seriously, but be firm with them. I’ve had to do this as I had a severe adverse reaction to the antibiotic I mentioned previously and they just wouldn’t believe me. I found someone who did in Liverpool and have been diagnosed. It can be pretty unnerving when your doctor doesn’t believe you, but do not give up as your health is at stake.

[MikeQ7]

am so, so sorry to hear about your situation; please do some research on the curing power of Green Lipped Mussel (food supplement). It turned my depressing existence aroud. Mike Q7

[Hollyday in reply to MikeQ7]

What an unhelpful reply to an unsupported young person!

[Candy2595]

Hey there, I have Pots, it was done via a BP test at the docs, was then referred to a cardiologist to confirmed. Had an ecg and a 24 hour cuff on, I clicked it when I felt wafty. That’s the only way it can be properly diagnosed, so if you’re under the cardiologist ask, if not hound your doctor. They do a tilt test too, but the 24 hour thing is kinder!!. Ask ask and demand!!.

Have you also been checked for fibromyalgia?.

Do you feel anything wrong in your neck/head when you have these episodes? You may need an mri to check your neck joints. Also muscles around the neck, if in spasm can cause a lot of issues - I’ve got fibro and joint hypermobility syndrome so things can move out of place or just be really painful.

Sounds like you need to see neurologist too, to get checked out, incase you’re having a seizure.

I’m afraid you’ll have to hound your doctor, ask to see a different doctor, write down your concerns, what you think it might be and why, always why. Doctors do get the hump with people googling symptoms and coming up with random things. But if you’re clear, precise and say why you think it is what it is, then ask what they think, they’re generally ok.

I’ve had to fight a lot!! But stress, anxiety and tiredness can affect pots, so can changes in temperature - try tight leggings like sports ones, it stops the blood pooling in your legs - up your salt intake, even by drinking a dioralyte - you’ll know if it improves by doing these things, then it’s likely pots, hope this helps x

[chronicallytired in reply to Candy2595]

Hi there, thanks for the advice! The doctor I suggested Pots to actually said to me that "it's a diagnosis GPs like to slap onto anything"! It was so rude and he wouldn't hear me out on it when I tried to protest. I've tried to get the heart monitor and wasn't able to unfortunately, and I'm moving away in 5 months, last time I waited for that heart monitor It took me six months. I do think it is Pots still and will check. In my new episodes the joints in my neck and hands do spasm, my body just goes rigid like a plank of wood.

However I'm lying down right now actually and by heart rate is at 108bpm which is the beginning of an episode- and I can guess that the trigger is because I am too warm. I don't know if that coincides with Pots?

I'll ask about a neurologist.

[Candy2595 in reply to chronicallytired]

I’ve never known a GP to slap out pots as an umbrella diagnosis. Go back to your GP surgery and ask to see a different doctor, they should do a seated BP and a standing BP - from that alone they should know, but further testing is always needed. How strange a GP to say that.

You may have issues with your spine/neck joints/muscles/nerves for this to happen, I’ve been there myself, still go through it, if there’s a spasm it’s nerve and/or muscles - so you need to get it checked, you could have a disc issue. You’ll need an mri first, then a neurologist, just to rule out spinal issues. You may get further with that than asking to see a neurologist (just a lil inclination on my past history).

Yes heat can trigger pots, hot showers, baths, weather, temperature changes.

I suffer like you in the heat, I also have bad spams and lock up too. I wish you all the best, keep us updated, but seriously ask to see a different doctor, you’re perfectly within your rights x

[nic013]

oh i’m so sorry you’re dealing with all of this, especially so young! neurologist sounds like a good next step. some of the symptoms sound like my POTS and also maybe check out MCAS (mast cell disorder, often seen with pots) the flushing and breathing stuff might fit in there. sounds like something else is causing all this though and hopefully you can figure out that root cause and finally get some relief! don’t know much about this but the head and neck stuff made me think of Chiari Malformation? do the symptoms of Chiari Malformation seem similar to what you are dealing with at all?

[chronicallytired in reply to nic013]

I don't have the symptoms of that Chiari Malformation or the MCAS, but definitely the POTS!

[Jenles]

I am so sorry that you are going through such a very difficult time without support. Do you have a teacher who is supportive, or likely to be supportive? Or does your school have pastoral support? Otherwise you could also contact child services at the local council and ask to speak to a social worker and explain your need for an advocate to help you cope with medical services.

I agree with others that it sounds neurological - possibly seizures or even an unusual presentation of migraine ( I had a very strange manifestation of a migraine when I was probably around the age you are, or a little younger)

Ask your GP to refer you to a neurologist (if you’re near London the National Hospital for Neurology is brilliant).

I do hope you get the support and diagnosis you need very soon.

[chronicallytired in reply to Jenles]

My vice principal and head of year are quite supportive and have said they will help and I will ask about a neurologist, thanks!

[Jenles]

Ask one of them to help you get a referral to a neurologist. Is there any adult at all who would go with you? Or even a friend in your own age group? Ongoing health problems at any age are difficult to cope with without support, worse when you’re young and have the pressure of exams etc.

[chronicallytired in reply to Jenles]

I could maybe ask one of my friends to come with me but it's a lot to ask and I don't want to burden them with too much

[Jenles in reply to chronicallytired]

I think you might be glad of some support as otherwise you might be worrying unnecessarily and probably wondering why you’re waiting so long. Also, if, and only if, you would be happy about this, you could ask them to come into the consultation with you to help you recall anything that you are told - or even take notes. Or is there, perhaps, a friend who has a parent you get on well with, who wouldn’t mind going with you?

[chronicallytired in reply to Jenles]

I don't think so unfortunately, but that might be helpful if one of my friends could take notes!

[WinterHope]

I'm no doctor by a long shot, but when you said to put your head back and your head forward negative things happen, it made me think of the arteries in your head or neck possibly being pinched off causing your problems. I hope that you get better very soon.

[MaureenMK Researcher]

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