Advice please. I'm facing into my 3rd week of vicious headaches, sheer exhaustion and aches & pains. I did an overnight stay on Thursday in hospital where a brain ct scan showed clear, all bloods also clear. There was mention of a l.p. to confirm VM but the neurologist didn't recommend it as it would make headache worse and all it would do is confirm VM for which there is no treatment. I left the hospital on Friday with meds for migraine & 10 days of steroids. I honestly should not have left as I'm in bed after having a really difficult weekend. I have 2 kids and it's hard on them to see mum sick.
My question is should I push to get the l.p. done to confirm diagnosis? In my heart of hearts I know i have VM, I can relate to so many stories on this page. I'm just concerned that it will worsen my headache and at the end of the day is there a major benefit to it?
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Ciarad
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Hello, You can find my 28 year old daughter, Rosie S' Story, via the link on the forum stories from the home page.
We found that cranial massage worked wonders for her. Her job is working with horses on pretty much a daily basis and is very physically demanding.
It is rare for a story to be so positive and we have tried to let people know that this amazing complementary therapy worked for her. It helps release the spinal fluid which VM leaves a blockage for. Rosie is pretty much cured after around 10 sessions coupled with actupuncture, although found awesome relief after only one appointment. She is now free of all pain killers and antidepressants and feels right back to her old self.
We can only let you know what worked for her. It's not for all, but has now given amazing relief for many. It seems the success could be to do with the skill of the cranial osteopath you use. So it is important to find out the osteopaths credentials and experience in this specialised field particularly dealing with VM sufferers, if you can. (Not all osteopaths realise that this helps VM sufferers, it is often carried out on young babies with birthing problems). You need an osteopath and not a therapist who mearly has some training in cranial massage.
If you find you are getting the violent headaches and feeling lethargic and depressed after a few weeks, give this complementary therapy a go, it really could be worth it and save you being on prescribed drugs, along with months, years, of unnecessary suffering.
I had bacterial so not sure on vm but surely you should get diagnosed and have some sort of treatment plan!
I had an LP and don’t remember having any issues but also i was very ill by then and dosed up a lot!
Everything i have ever had has been misdiagnosed and i have had to fight/push for answers!
Listen to your intuition and push for what you need!
Get a second opinion! 🤗
Hi, I had VM just under a year ago and although I had a lumber puncture to confirm diagnosis, it wasn’t pleasant and the first attempt was an epic fail with blood spurting everywhere. I do however understand your need of some kind of confirmation of having VM but if all other symptoms are obvious then don’t worry- I was sent home from hospital with painkillers and ended up back in A&E with extreme headaches and was put on morphine. It’s horrible and so painful but it will ease . I was off work for 10 weeks and have suffered over the past year with extreme exhaustion and residual headaches. VM is brushed off by medical staff as it’s not considered life threatening- but remember that just because your life isn’t in danger it doesn’t mean that you’re not suffering horrendously. Don’t underestimate how debilitating the illness can be so look after yourself and rest for as many weeks as you need to. Jo.
Hello, You can find my 28 year old daughter, Rosie S' Story, via the link on the forum stories from the home page.
We found that cranial massage worked wonders for her. Her job is working with horses on pretty much a daily basis and is very physically demanding.
It is rare for a story to be so positive and we have tried to let people know that this amazing complementary therapy worked for her. It helps release the spinal fluid which VM leaves a blockage for. Rosie is pretty much cured after around 10 sessions coupled with actupuncture, although found awesome relief after only one appointment. She is now free of all pain killers and antidepressants and feels right back to her old self.
We can only let you know what worked for her. It's not for all, but has now given amazing relief for many. It seems the success could be to do with the skill of the cranial osteopath you use. So it is important to find out the osteopaths credentials and experience in this specialised field particularly dealing with VM sufferers, if you can. (Not all osteopaths realise that this helps VM sufferers, it is often carried out on young babies with birthing problems). You need an osteopath and not a therapist who mearly has some training in cranial massage.
If you find you are getting the violent headaches and feeling lethargic and depressed after a few weeks, give this complementary therapy a go, it really could be worth it and save you being on prescribed drugs, along with months, years, of unnecessary suffering.
The amount that you are posting exactly the same words on multiple threads is becoming weird and suspicious. Do not post the same exact thing on a thread more than once.
Hi my daughter has just recently recovered from a nasty VM , although you say there is no treatment, it really does depend on what type of virus is causing the infection. In her case it was the varicella or chicken -pox virus which had gone up to the brain causing VM and for this there is treatment with anti viral IV meds. But the only way to know for sure is to have a LP. If you are still feeling very poorly I think it is worth seeking further treatment as it could be something which can be treated. I hope you feel better soon though, it’s a horrid thing to go through. Xx
Forgot to mention that the LP does not always give headaches, but even so if you’re already suffering from them, you won’t notice any difference. My daughter had 2 in the end but def needed the diagnosis ., sometimes they say they can help release a bit of pressure on the head which can help the headaches . She needed 3 wks of IV treatment. I think you should get another opinion , get well soon x
Thanks so much. I have just called another neurologist for a 2nd opinion. I seem to have gone backwards with headaches, it's awful. The neurologist I saw in the hospital is suggesting a steroid injection into my head which will cost €440. Surely there are other avenues we can go down? Many thanks for feedback. It really helps.
I've had VM twice and had a lumbar puncture each time. Like someone mentioned you need to have that so they can test the spinal fluid to see what virus or fungus is causing it. My first time I was exposed to herpes simplex 1 which needs to be fought with heavy anti viral drugs via IV. In fact I had to get a pic line and go home with the IV for two weeks with an at home nurse. The second time I got meningitis it was caused by an enterovirus. I had the same course of treatment just a few days shorter. After my second episode I've been unable to fully recover and get dizzy nauseous extreme pain in my neck head and back. Definitely get your spinal fluid properly diagnosed so they can give u the right course of treatment! This is a much more serious disease than the doctors make it out to be!
Thanksfor all the messages. Since my post the headaches had increased so my doctor sent me to a&e for 2nd opinion but the delays in there were roughly 9hrs which I wasn't well enough for. The hospital I was in the previous week was private so she contacted them again and my meds were changed. I am currently on anti inflammatory tabs twice a day and I also am on Frovex painkillers but they can only be taken 4 times a week. I really find there has been improvement in the last 2 days tg. Stress and noise are of no help at all to me so I'm trying to keep the house as calm as possible. However I do wonder how I'm going to manage back at work as a manager. My GP has signed me out for a further 2 weeks which I feel is really needed. Im literally doing nothing, not able for anything but rest. That seems to be the only thing consistant with everybody....Rest is the key.
Would I be correct in saying that VM is a secondary virus? I broke out with a few coldsores on my mouth (never get them) over a month ago after sharing a bottle of water. I was so frustrated with myself as I would usually be careful that way. Not long after that I was feeling fluish and just deteriorated from there.
Almost everyone is against me having a VM to confirm. I honestly wonder what doctors really know about this illness, it's frightening. The hospital told my GO they were treating me for migraines and they suggested I get an optical nerve block for head pain (steroid injection into the head.) I feel like down by them tbh as they never went through options at all and seemed keen on getting me home as it was the weekend.
Injections like Botox will help your pain in your head, I’m not calling it headaches because they are very different from what you are experiencing. The pain is very unbearable and when I was diagnosed in November 2016 the ER doctor was 99.9% sure I have VM so I didn’t do a LP. Your exhaustion is a result of this sickness I’m constantly fighting fatigue. It’s been a year and some change with no changes in the head pain body aches and feeling tired all the time. My advice when these things get worse like you’re going about your day and your headache seems to be unbearable where you can’t think...LAY down. If you push through your exhaustion your pain will only get worse. Nerve blockers help but will not last but it does give you a relief I call them breaks from the head pain. But when it wears off the pain comes back with a vengeance. Resting throughout the day will help you get through a whole day. Explain the best way you can to your children what you’re going through in way they understand but regardless it’s very hard for family to see you going through this. Rest is your best friend and talking or writing down all what you are experiencing just to keep track if any changes happen you can update your doctors.
I would like to give you an update in the hope that it may help someone else also. I went downhill again last weekend with the immense pressure in my head, it was horrific. On Monday I attended my 1st Reiki session which was amazing, it went on for 2 hourse and my head got worse before it got better that afternoon. I followed that up with a bath and im almost a week of huge improvement. I'm so happy with that outcome. I'm still battling fatigue but that's ok once I don't push myself too much. I'll attend Reiki again at the end of the week. Hope this helps with your recovery🤗
Just a quick update of where I'm at and what is helping me. I have had my 3rd Reiki session today and my head feels so much lighter. I'm going to brave working in the office tomorrow as I did a few hours at home this week also. I'm easing back to it as no way do I want to go backwards again. Hope your all recovering.X
Ciarad I begged them not to do an LPl. I have spinal stenosis and chronic pain issues and was worried it might agravate things. Point is they knew from my bloods it was viral . Don’t put yourself through it!
Be kind to yourself. Ps totally empathise with the whole ‘ go home - it’s s virus’ advice. Very debilitating! Not good being alone .
Hope your recovering. I'm back to myself thank god. I had 4 reiki sessions which I found a huge help. I'm feeling good about 3 weeks with my energy back & back working full time. My problem now is trying to slow myself down!! The whole e periemce was very scary & horrific tbh but I feel very blessed as reading some people's stories they are suffering for so long. I'm nervous about it ever reoccurring but for now I'll enjoy feeling well. I did write a letter of complaint to the hospital as there WAS no support whatsoever. Wishing you the best.
I'm feeling stronger bit by bit. I'm heartened to hear your update. I do need to watch though. I have been in a stressful relationship and decided to take a break because I realised how stressed it was making me and how it was inhibiting my recovery. I need to go back to work as I have planned two short trips end April and start May.I wont enjoy them the same if I'm still signed off sick.
Though worried about heading back too soon. I'm trying to get a neuro referral as I have zero balance and the headaches are regular.
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