Strange symptoms with no answers.

What you are going through sounds very frightening .I assume the blood tests were normal and that any medications you are on have been evaluated for any of the side effects that you may be experiencing.It feels like an insult when your doc or NP suggest a psych but it might prove helpful. Perhaps a medication for anxiety would be helpful. Perhaps you need to be evaluated during one of these acute attacks at a walk in clinic or ER.I live in US so that would be what I would do --but need to call first to see if that is what is advised.Your Dad dying at age 46 suddenly of a heart attack has to be also hard to cope with and your thoughts would naturally cause you to fear that is what is happening.Anyway I am just trying to offer my suggestions. Please keep us posted on how you are doing

That sounds terrible. It's horrible to hear that you have been ignored by doctors before when serious stuff was going on! That's enough to give anyone a real panic attack. It's quite an array of symptoms. The first thing that comes to mind is side effects from any medications you might be on. I remember I started Stelara and had headaches and dizziness. I had a brain MRI done. lol. It was just the side effects of the drug. What drugs are you on?

I realise this isn't what you want to hear, but I'm afraid many of your symptoms fit perfectly with hyperventilation. I would stress that I'm speaking as one who suffered from this for several years when I was young.

Hyperventilation does what it says on the tin: we breathe too deeply and too quickly. This has the effect of 'rinsing out' too much carbon dioxide from the lungs, leaving the body in a slightly alkaline state, which in turn affects the normal electrolyte balance. This isn't at all dangerous, but it produces unpleasant symptoms: tingling or 'pins and needles' of the extremities (including the lips in my own case); dizziness and slight nausea; brain fog; a sense of depersonalisation; a feeling of breathlessness (which is paradoxical, given that we're breathing too much); and at its worst, a stiffening of the face and hands. The latter can also spread to the throat, giving the sensation that you can't swallow properly.

This phenomenon, which is a reaction to prolonged stress and anxiety, is entirely unconscious. I started suffering from it around puberty, but I only figured out what it was when I started training as a nurse at age 20 and learned about hyperventilation.

The best way to tackle it is to address the underlying cause of the stress or anxiety. However, it's also possible to deal with individual attacks once you realise what's going on. The time-honoured 'cure' was to breathe in and out of a paper bag. This is chemically sound, as it means you re-breathe some of the excess CO2 you've breathed out, which should rebalance your blood acidity. Some people actually find it helps them, so I suppose it's worth a try, and certainly won't do any harm. However, this method had already been discredited when I was training, nearly 60 years ago. I actually tried it a few times myself back in the day, but the main reason it doesn't work very well is that when you're in a state of hyperventilation you subjectively feel you're not taking in enough air - even though you're taking in too much in reality. Clearly, adding in anything that slightly obstructs your breathing is going to make everything worse in this state!

The method that worked for me was to sit quietly and consciously 'underbreathe' - i.e. not take in as much air as I felt I needed - for as long as I could keep it up, then take in a single deep breath before starting again. At the outset, I'd find I could only keep up the underbreathing for about 20 seconds before gasping for air, but as I carried on the interval would gradually get longer. After 5-10 minutes of this, my symptoms would usually have worn off.

You can find specific breathing exercises for hyperventilation on line, but some people feel that these tend to cause a sense of panic, which is counterproductive. I think we all need to find our own way to cope with this problem. The only essential is to acknowledge that you may be hyperventilating, even if it doesn't feel that way.

Personally, I've never found full-on psychiatry to be a good way of dealing with minor anxiety states like ours, though I realise that views are different in the US, where you are. If you'd prefer to seek therapy, things like CBT usually work better for this kind of thing. However, it's essential to find a therapist who you really get on with, and also to realise that it's the patient who has to do most of the work in CBT.

Hi

I'm sorry you have these symptoms and no answers at present, I too have Crohn's so understand how frustrating it can be to get listened to at times. I'm also a nurse but not practising due to my illhealth, I wonder who has reviewed your blood results did they check your b12 level? Also has anyone done an ecg? Maybe you could have a 24 hour ecg trace in the uk they do them sometimes as an outpatient, you just get fitted with the ecg leads connected to a small portable monitor which you can wear fairly discreetly and it monitors you over the period of time set by the dr/nurse usually 24hrs. I would think it may give some insight into what is happening alongside any symptoms you may be having at the time and peace of mind that you are being thoroughly checked given your family history. I'm sorry to hear that your dad passed away at such a young age it must have been incredibly hard and such a shock and I really feel for you.

I think with Crohn's it can cause lots of different symptoms and its possible some may be linked to your ibd but you need thorough investigation and you need to know what the plan is. For me I get some symptoms similar to you but I don't absorb b12 due to Crohn's in my ileum and also don't absorb much of my nutrition in general I have low folate levels severe Vit D deficiency and chronic iron deficiency anaemia. I stopped being able to tolerate vitamins or iron supplements so now am reliant on having injections at the hospital and infusions of iron. The vit b12 deficiency really makes me feel unwell and causes dizziness feeling weak and I keep sighing as if I can't breathe properly this was quite marked before I started treatment and I had to ask more than once before I was listened to. I am lucky to have good doctors at our medical centre and I try to keep a record health diary of symptoms when they occur or get worse so I can keep a record of what may be causing what as I have several deficincies/anaemias from Crohn's plus arthritis and high blood pressure. I also have some family history of cousins having cardiac problems so need to be mindful of that. I take budesonide a steroid for my Crohn's flareups but only if I can't get ontop of it with means such as resting my bowel and taking my other meds but also have diverticulitis and ibs so sometimes hard to know what is causing what with me! Sorry going on a bit now pkease let us know how you are and I always advise to take someone with you to appointments if possible as you often get taken more seriously

Hope this has helped a little please remember you are not alone we are all here to help...

Take care x

I like the response about the hyperventilation. It is worth a try for you and see if that helps. But I also would not rule out any medication for anxiety until you get this under control. There are safer non addictive ones on the market today.I hope you find the answer

Wishing you the best outcome

Gloria