No treatment from beginning. 8 months later... - Meningitis Now

Meningitis Now

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No treatment from beginning. 8 months later at my worst, heart feels tight. Chest is tight. Feel heartbeat.

Sunny308 profile image
19 Replies

Chest pains. All I can hear is my heart. Chest gets tight when I move. Time for hospital .. Anyone relate?

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Sunny308 profile image
Sunny308
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19 Replies
Starry profile image
Starry

Gentle hugs. I'm so sorry you are struggling so much and that the medical system has let you down.

My symptoms differ but I relate massively to your situation.

Thinking of you.

Rowi profile image
Rowi

I did not receive any treatment in the beginning because I was not diagnosed until five months later. (The first doctor said it was anxiety and depression. Mm...) I too had feelings that my chest was tight or heavy. Sometimes I had chest pain. My head would pound or my heartbeat would feel like it was in most of my body. (All of this occasionally still happens.) If you feel it is warranted, you might go to the hospital or see your doctor (or maybe a different one if you feel you're not getting the help you need). Every time I thought of going to the hospital, I dreaded it because I knew it meant lots of light and sound, which bothered me most. (I originally thought the chest pain and discomfort was heart stuff, then I thought it was EMF sensitivity. It turns out I had the beginning of a hiatal hernia.)

That said, I will share what has helped me (at the risk of repeating a few things). I think that after a major illness, many things can go wrong, and it becomes a vicious circle. There was a lot of fear and confusion for me, but as much as possible, I've tried to be positive and find little things that make me feel better. My doctor said my autonomic nervous system was affected. I was pretty much in a state of panic 24/7. (Couldn't sleep, reacted to sound terribly...and many other things like a pounding head and involuntary movements when I was in bed).

For me, it has been very important to find ways to calm my system down. Sleep and midday naps are absolutely essential. I take magnesium glycinate (build up slowly) and make sure I get enough calcium in my diet. No sugar, coffee or alcohol; they all upset my system. I also take blue vervain in tincture for sleeping. (Some may be helped by valerian or passion flower. Everyone is different. Melatonin actually made my insomnia worse) And a B-complex in the morning for nerves. Also, I find that 45-60 minutes of gentle stretching in the morning really helps. I follow that by a massage around all my ears, my neck (especially at the base of the skull), and my scalp, then neck stretches and exercise. This often helps my tinnitus. (Again, everything must be gentle and slow.) My chiropractor explained that sometimes it only takes a millimeter of something going wrong to make a difference. So if you think about how the meninges is (or was) inflamed, it makes sense to keep the body supple. Also, it really helps to breathe slowly and regularly when I do this. You can build up to slow, steady breathing then deep breathing till you get to doing it several times a day. I lie down and put my feet up the wall for about 10 minutes two or three times a day. This can help to calm me down and lower blood pressure. (Maybe try once a day to start.) I also meditate. (This can be hard when the tinnitus is up.) And I do a thirty minute walk twice a day. (You can walk in your house if you can't go out. And maybe try lifting your knees as you walk.)

Another thing that has helped is warm (not hot!) compresses on the back and side of my head, neck and shoulders, especially before bed. Also, Epsom salts baths, but start slow. Make sure it's not too hot and don't use too many salts in the beginning. I see a chiropractor and an osteopath. I do eye exercises and use eye drops and sunglasses. Some people are helped by acupuncture and cranio-sacral work. I know this is a lot. Perhaps you could implement one thing at a time and see how it works. I also found that staying off the computer and reading was helpful. After all of that and a year's time, I still struggle and am unable to work full-time.

Sunny308 profile image
Sunny308 in reply to Rowi

2 weeks ago feeling heart beat throughout body started. Used to only have pulsate tinnitus, it's scary and annoying. I notice it most when I'm still, even though I'm not able to move much. Tight Chest, heavy chest when stand, and pain in upper back. Did u get back pain? The heartbeat reminds me of when you have flu and really sick and weak

Sunny308 profile image
Sunny308 in reply to Sunny308

Had these symptoms mildly in beggining now constant everyday. Unbearable

Sunny308 profile image
Sunny308 in reply to Rowi

When I talk my chest goes Tight, bite my lip, scratch my scalp it goes Tight, pick at a scab, use tonque to get something out of teeth for example

Barbaustralia profile image
Barbaustralia in reply to Sunny308

It sounds awful

I have different symptoms bright lights unbearable

I find Hospital useless and bright and noisy

I hope it might be better for you though

Now I only go if emergency but don't expect them to heal me usually traumatic and makes werse

I hope you get better

Acupuncture helps

Rowi profile image
Rowi in reply to Barbaustralia

I can imagine that going to the emergency room is not always helpful. (I am also light sensitive.) In my experience, I found that finding the right practitioners were key, one that could diagnose and listen to me and understood what VM is all about. And then I have the ones who help me on a weekly or bi-weekly basis. I went to two doctors in the beginning who had know clue what was going on.

Barbaustralia profile image
Barbaustralia in reply to Rowi

My vm was caused by an emergency room doctor giving wrong medication causing my head to swell and no dr has provided any cure or helpful tool despite many visits glad u have found good doctors are there any treatments that help

Most doctors think u can think your way out if symptoms and are dismissive or just say they don't know or give migraine drugs

Rowi profile image
Rowi in reply to Barbaustralia

I am very sorry about your experience. I'm definitely not cured, just better than I was. You can read my long post above about what has helped. Best of luck.

Sunny308 profile image
Sunny308 in reply to Rowi

Did you experience any upper back pain rowi?

Rowi profile image
Rowi in reply to Sunny308

I had pain all along my spine and neck that radiated to my upper and lower back. Maybe some of the things I suggested in my long post will help. You might also try pilates or tai chi. If you can't do that, maybe child's pose, either with your knees together or apart, accompanied by slow, deliberate breathing. I found that when I listened to my body and kept trying different things (one at a time), I started to see some results, although sometimes I didn't get it right.

Sunny308 profile image
Sunny308 in reply to Rowi

What is hatial hernia? How long u suffer with sound mine came extreme 3 months in, suffering for 5 months now chest gets tight when type

Rowi profile image
Rowi in reply to Sunny308

As I understand it, the stomach pokes its way into the esophagus. I had a lot of chest pain. The heart fluttering (and sort of shifting) started about two months in. The chest pain a couple of months later. The chest pain was helped by propping myself up with a pillow when I sit in a chair, as anytime I'd be bent over or even slightly slouched, it would bother me. I also put my laptop up on a box and got a keyboard and a mouse. And I prop up my book on a pillow when I read. And I put my cell on a copy stand when I text. This helped quite a bit.

Sunny308 profile image
Sunny308 in reply to Rowi

Do i need medication for hernia? I have all of those symptoms except I only get pain horizontal across top of back. Was mild in beginning now every day for 2 weeks. Scary and bothersome. Thought I was dying!!!! Online it says the back pain is heart related ... I got really sick and stayed still for a week thought was going to die once I started moving again is when all these symptoms came on strong. Was unbearable.

Sunny308 profile image
Sunny308 in reply to Rowi

We're certain noises like traffic unbearable and make u want to stab your self in the head? My place is insulated and I can't tolerate it. In tears mentally drained did everything turn up on you?

VMroom profile image
VMroom

After VM I was diagnosed with ME/CFS. I have heart palpitations and chest pains which about 1/3 if ME patients have nevause of a condition called POTS which can happen after a viral infection. Info on pots.uk.org

ME & POTS, like VM are often hard to diagnose & misdiagnosed so if you believe you have either take information with you to a doctor/hospital to help convince them.

Sunny308 profile image
Sunny308 in reply to VMroom

I think I have M.E never heard of pots

Sunny308 profile image
Sunny308 in reply to VMroom

Did u get upper back pain with it?

Sunny308 profile image
Sunny308 in reply to VMroom

We're you bed ridden and very ill?

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