Head tingling face, legs, and arms

[bubbatetley]

Hi, I am a newbie here, so hope you are all doing as well as can be expected.

for the last 12 months I have had 24/7 head tingling in random parts of the head with weird sensations too, plus head pain and now headaches daily.

Went to GP who sent me for an MRI and Neurologist who was absolutely useless saying this could be the start of MS, come back to see me in a year. DOH!!!!

So, forward a year I'm now worse with walking and balance problems , still got the tingling sensations which are now worse. My legs, arms, face, and various parts of body tingling .

GP said this is Vertigo , but I do not have spinning or objects moving around, he said you can have different kinds of vertigo that causes these sensations. then I started having daily ear pains, nausea, and feeling very ill where I was to unable to go out and very tired. GP started me on Cinnazerine tabs for Vertigo, they didnt help at all.

I have moved in the mean time and now live in Yorkshire.

New GP sent me for hearing test as I'm having popping, ringing, itching and strange sounds in the ears. Hearing test has showed Loss of hearing and Eustachian Tube Dysfunction .

I'm now waiting to see ENT Consultant for a suspected Neuroma.

I have never felt this ill and am heavily congested and always sound like I have a cold.

No appetite and am loosing weight. Also can't stand any loud noises and like to be quiet, alos my sense of smell and taste has changed.

Sorry for the long rant, but I'm very scared and dont know what to do.

Any advice greatly appreciated.

Thank you and best wishes to you all

Bubba🥲🥲

[Santory]

Hi, had something similar. It turned out to be hydrocefalus. Got operation and now live with a shunt.

[Ally100]

Hi there, sorry to hear you’re experiencing such horrible symptoms.

I was diagnosed with an AN last October after 12 months of similar symptoms.

It started with tinnitus, vertigo, hearing loss, nausea, fatigue and balance issues.

I’m currently on watch and wait and will be scanned again in April.

My symptoms appear to have settled down a lot ( or maybe I just got used to them) but I do have tingling / pain in my left cheek area as the tumour is pressing on the facial nerve.

Your post caught my attention because I also experience strange tingling/ internal tremors all over my body, I don’t know if it’s related to the AN or something else, I’m currently waiting for an appointment with neurology.

I was terrified when I was first diagnosed but with lots of research and support from AN groups it really put my mind at rest.

The 12 months of awful symptoms but not knowing what was wrong was the worst bit.

I hope you get some answers soon.

If you do discover you have an AN, I’d get in touch with BANA, they’re a brilliant source of information and support.

Best wishes 🙂

[Kimbenn in reply to Ally100]

Hi I am also a newbie and I am still trying to get my head around what is going on, like you I have suffered with vertigo, tinnitus, balance and hearing loss in my right ear for over 12 months. I was sent for a hearing test after I reported that my hearing had changed while I was having a check up with the nurse at my GP surgery after my hearing test I had a telephone call from the community ENT Doctor to say that I would be sent an appointment for a MRI scan to make sure that my hearing loss was not due to any nerve damage. I went for the MRI scan in January and was called again by the community ENT Doctor with the results this is what he told me, he said unfortunately a lump has been detected but don’t worry it’s nothing sinister it’s a AN so you will have to be referred to the hospital for them to deal with it, I was so shocked and asked him what will happen he told me that it would be the hospital that would decide what is the best way to treat the AN, it could be wait and watch or radiotherapy or surgery but he didn’t know I asked how long I would have to wait for the appointment at the hospital, he said I don’t know but it won’t be quick and that was it end of phone call. I went on the NHS website to find out what a AN was and was even more alarmed to read that it was a brain tumour, I then linked into this site through the NHS and have gained a lot from your experiences, so now I just have to wait for that appointment at the hospital and carry on worrying about what will happen with me, sorry about the long tale. I hope you get seen very soon and all your questions get answered.

Best wishes

Kim

[SunFairy]

Hi to Babba and others,

I was diagnosed with an AN 11 years ago, I had blocked fullness sensation in my ear, tinnitus, balance issues and tingling sensation in my cheek and a twitchy eye, I probably had headaches and fatigue too, but was always so busy didn't pay attention, and I have always suffered with migraine.

So ANs are very slow growing benign tumours they are considered brain tumours because they are in the base of your skull. For many people it is a case of watch and wait depending exactly where the AN is situated.

My experience was that I had radio surgery 5-6 months after diagnosis. I then had annual MRIs for 9 years and all was good. During that time my symptoms had settled and I carried on as normal. But in the months leading up to my 2022 MRI I had noticed my symptoms gradually becoming more noticeable to me. Then my neurologist told me my AN had began growing again which wasn't too much of a problem, but it was now cystic and pressing against my facial nerve, and it now needed removing. I had my Op in August 2023, I am still recovering as it knocks the stuffing out of you. I have my 6 month MRI next week to check all is OK, so fingers crossed.

My main point is not knowing anything is scary but the good thing is ANs are manageable with the right treatment and your neurologist will know what is best for you, as we are all different. There is plenty of information available and BANA is the official source of information and help.

Sometimes these forums can be worrying with some people having horror stories of their experiences, but it can also help to know others are in a similar situation and you are not alone. It is always good to talk to others.

Please know you will get through this whatever your diagnosis. I wish you all the best and hopefully you can feel a little less stressed.

Sunfairy - Dee 🌼

[bubbatetley in reply to SunFairy]

Hi SunFairy

Thank you so much for replying and yes all the symptoms are very scary not knowing what is going on. Please may I ask did you get head tingling and random body tingling? I have had these awful sensations for over a year now. My GP is saying that the head tingling is Vertigo, but I disagree with him, he has put me on Cinnazerine but they don't seem to be helping.

I am going to see a Neurologist next Tuesday, so hopefully I will get some answers. I am now having terrible ear pains, fullness, ringing and loss of hearing. Had Audiology test and its been confirmed I've lost 50% of my hearing, and said I need hearing aids, which I'm very reluctant to have fitted. I walk like I'm drunk and my balance is not good, but again I will not use any aids. I have recently stated to be very sick and have terrible nausenouness daily.

I have never fely so dreafully ill and cannot carry on like this. I use to be very active and go to the gym daily but I'm finding just going to One shop is too much for me and have to come home to lay down.

Sorry for the rant, and again thank you for the support.

Take care and as the saying is slowly, slowly for you.

God bless

Kind regards

Bubba🌸🌸🌸🌸🌸

[SunFairy in reply to bubbatetley]

Hi Bubba

Sorry you are suffering so much with all your symptoms. I think we can feel very unwell when we stress about these things. Try to relax a bit, easier said than done I know, but it may help you.

It is good that you are seeing the consultant on Tuesday as they will be able to advise you of what the cause is and how best to proceed.

I hope you get all the answers from your appointment.

Yes I did and still have tingling and numbness in my head and face but don't think I have suffered tingling anywhere else. I have had issues with walking like I was drunk too. I had begun to not go out on my own or if I had my grandson I would sit him in the pushchair so that I had something to hold onto. I had hearing loss and had a hearing aid which I was like yourself reluctant to have, but it helped me. Since my Op I have a stick for when I am outside home, it helps me to feel safe. I now have a crossover hearing aid, I am completely deaf in that ear now. I would advise take any aids offered to help, as they really do help especially with your confidence. If you find it doesn't help or work for you, you can ditch it, at least you will have tried. I am hoping to ditch the stick in time.

You are not alone. I am happy to chat if you need it.

I'm wishing you all the best, and hope you get on well on Tuesday.

Take care.

Sunfairy Dee 🌸 🌼

[bubbatetley in reply to SunFairy]

Hi Sunfairy

Hope You're feeling better and stronger.

Take care

Happy Easter

Bubba🥚🥚

[SunFairy in reply to bubbatetley]

Hi Bubba I'm doing OK thank you. How are you doing? How did you get on with your appointment? I hope you are feeling a bit better now.

Take care. Happy Easter 🐣 to you also , enjoy the weekend.

Best wishes Sunfairy Dee 🌼

[Maybaby61 in reply to SunFairy]

Your symptoms sound very similar to mine. AN 5cm detected october 22. Shunt fitted January 23 as tumour was preventing fluid draining from my head, Aneurysm was discovered and coils fitted April 23, may 23 tumour removed, was sent to Orpington hospital for 5 weeks to learn to walk again. July 23 collapsed, emergency operation as fluid overdraining from brain. Recovered enough to return to work September 23, still have numbness on left side of face, balance can be a bit off when walking although no longer using walking aid, totally deaf in left ear with cross hearing aids, can be a little forgetful but that could be my age as I am in my 60's

[SunFairy in reply to Maybaby61]

Hello Maybaby61Sorry for slow reply. I'm sorry to hear how many problems you have suffered. I hope you are well and truly on the mend now.

Well I've had my post op 6 month MRI and everything looks encouraging so far. I have been suffering immense pain in my head since the op which is now 8 months. My GP has had a chat with my neurologist and they have come to the conclusion that my migraines have altered as this can happen after this type of surgery, so the GP is changing my migraine medication to help prevent the onset. So I will see how well that works. Still have not had the confidence to go out on my own yet, still needing a stick too, I believe it's just because my head is a constant fog from the pain and I'm hoping when the new meds kick in, then that will change.

Lol, I totally get the forgetfulness, I'm forgetful and also in my 60s. I'm also more clumsy nowadays.

Look after yourself. All the best.

Dena SunFairy 🤗

[Kimbenn in reply to SunFairy]

Hi Sunfairy

Thank you for the wise words you don’t know how much they have settled my nerves, I have had my appointment through to see the consultant and although I have to wait until the 8th of May at least I have a date. After reading your words I can rest a little easier. I hope all goes well for you Babba and Sunfairy I have my fingers crossed for you 🤞

[SunFairy in reply to Kimbenn]

Hi Kimbenn

I am pleased you feel a little less stressed after my post, I am happy to help.

It is worrying when you don't have any information. To be told you have a lump or in my case the ENT consultant said it was a 'tumour', sounds horrifying, as we always seem to associate lumps and tumours with being malignant when infact ANs are benign, so even though they say you shouldn't worry and that the neurologist will explain everything it is still scary and we still think the worst. When you see the consultant they will explain what is the best course of treatment, or if it will be just watch for now. You should also get a specialist nurse who will be a great support, mine is brilliant, she has guided and advised me all through and is my go to for every little or big concern I have.

My advice is to try and put it to the back of your mind and carry on as normal. Nothing can be done until your appointment, May will come around soon enough. It is worth remembering ANs are very slow growing, you may have had it a long time already as symptoms take a while to appear, plus there is always someone to chat with here. I am always happy to chat if you need it.

I wish you well, take care.

Sunfairy Dee🌼🌸

[Kimbenn in reply to SunFairy]

Thank you 😊

[SunFairy in reply to Kimbenn]

You're welcome 😊

[bubbatetley in reply to SunFairy]

Hi SunFairy Hope youre feeling a bit better and sronger. I am stll the same with awful pins and needles . I went to see Neurologist and he has done some extensive blood tests and having more scans done., He has put me on a medication called Nortriptaline to see if it helps with the alterered sensations ( Pins and needles) as yet not noticing any differance. Got to go back in June for results. Went to see ENT Consultant who said I've lost some of my hearing, so wants me to have hearing aids to see if that makes any differance to my balance isssues and Tinnitus. DO NOT WANT THEM!!! I still have a gut feeling that there is something sinister going on. I don't care anymore I just want a diagnosis and treatment. Wish I could afford private as the NHS takes months.

Take care and have a good restful weekend

Kind regards

Bubba 🪷🪷🪷

I

[SunFairy in reply to bubbatetley]

Hello Bubba Sorry for delayed reply.

So sorry to hear that you haven't got any further forward and are still suffering all those symptoms. It can be a slow process. Sometimes new meds can take a bit of time before you see any benefits as they can be slowly helping but not noticeable straight away.

As I said before ANs are very slow growing and the symptoms can be quite awful. I had a hearing aid before my surgery and it certainly helped with tinnitus, hearing of course and a bit with balance. They do take a little while to get used to but in my opinion it is worth it in the long run. I was also apprehensive to have one, they are very discreet, most people didn't realise I had it.

I hope that you get some answers soon, and if any of the consultants you have already seen thought that there was anything sinister going on, then you would be getting seen very quickly, so to me the fact you are having to wait so long is because they are not overly concerned. I know it's hard waiting because we always tend to think the worst. It's the not knowing that is what worries us.

Take care and hopefully you will have some answers soon.

Best wishes

SunFairy 🌸 🤗

PS: I'm much stronger. Doing great except for immense head pain, my GP is changing my migraine meds as thus type of surgery can alter migraines. Hopefully I will then feel much better. 🌸

[bubbatetley in reply to Kimbenn]

Thank you so much. Hope youre not suffering too much!

Take care, Happy Easter.

Bubba🥚🥚

[bubbatetley in reply to bubbatetley]

Hi Sunfairy, Thank you for thr reply. I am so glad you are feeling stronger. Slowly, slowly as they say.

Yes, its very worrying and extremley frustrating having to wait for such a long time to get to see any Consultants on the NHS. I just wish I could get rid of the pins and needles in my face and head.

Take care and keep getting stronger

Best Wishes

Bubba 🌷🌷

[SunFairy in reply to bubbatetley]

Hi Bubba

Thank you for your support. I have new migraine meds so I will see how that helps.

Sorry you are having a rough time with the pins and needles. I still have a tingling sensation in my face but I have gotten used to it, you will probably find some days are better than others.

I know it seems forever waiting for an appt but you will get there.

Take each day as it comes.

Best Wishes SunFairy 🌼🌼🌼