Weird sensations : Does anyone else... - Scleroderma & Ray...

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Weird sensations

Emfrenette
Emfrenette

Does anyone else have full head and swishing sound (waves) in there head. Sometimes I get ringing in my ear but more so the fullness in my head. Always have pain in my left shoulder and when I bend down its 10x worst . I do get dizzy spells and off balance like I've seen alot of people complain about on here also . My doctor mentioned vertigo and made it seem that I had it but made not too much effort to explaining to me why or if I needed to do anything. She did check my ear once and nothing was going on . But nothing more than that. I've suffered with migraines since I was 11 . And I'm used to living with the headaches but now vertigo numbness in my body . The other day my right arm lost sensation . I could love my arm for about 30 mins I was freaking out but then it got better now it feels weak still. All of this even related ?

9 Replies
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Hi Emfrenette

I have suffered fybromyalgia /chronic fatigue for many years and suffered pressure in head for years that drove me round the bend it eventually went .I also had strange sensations of ice cold water trickling down the inside of my skull. For many years I felt as if someone had cut the top of my head off and it was exposed to ice cold .

I also having swooshing noises and ringing in my ears I liken it to you when you are holding a seashell at your ear that sort of effect . I have recently tested positive for systemic sclerosis. My first rheumatology appointment 2 weeks ago I was told they cant see any signs at the moment even although I have some symptoms going on that are new to me . I have been referred for heart ultra sound and lung function test. Hope you get some relief soon it is very difficult to keep in control with these horrible sensations . take care Kathy x

Emfrenette
Emfrenette in reply to babyinny

Funny that you mentioned the cold trickling feeling . I had that sensation a few times on my knees/legs .. it has come and gone now but wondered what the heck it was . The noises I hear usually is like a seashell or constant traffic in a sense its quite annoying and it makes me feel like I'm always getting a head rush *ex. When you stand up too quick . But like 90% of the time it's quite annoying . How did you get diagnosed with chronic fatigue ? I'm always tired sometimes I could fall asleep mid sentence sometimes my daughter is talking to me and I start to doze off a bit it's quite embarrassing ,wishing you all the best with the new rheumy !

babyinny
babyinny in reply to Emfrenette

I was very unwell with loads of weird symptoms started off with numb sensations ,in my legs and feet tingling all over and eye disturbances ,muscle twitching and jerking . I had terrible weight on my body as if I was carting bags of sand about on my back I was tested for MS this was 30 years ago. I have had relapses on and off over the years. These last 3 -4 years 1 have gradually been getting worse . They do a battery of tests if they cant find anything you have chronic fatigue or fybro. My husbands aunt had chronic fatigue syndrome and she fell asleep at drop of a hat I never had that. I phoned a help line and was told by a nurse 50% people have total lethargy and 50 % have neurological symptoms and that has always been the case with me.He you ge t some relief of your symptoms soon I am climbing wall with burning mouth and sore toungue just now drive me crazy Kathy

Hidden
Hidden

Hello Emfrenette

I have same swishing and ringing in ears and diagnosed with Tinitus. No cure but different things to try to reduce the "going mad" effect. Need a referral to ENT. I find the small portable radios like SanDisk useful as earbuds in ear with music or speech help to block it, especially when trying to get off to sleep. Hope that helps.

Good luck.

Hi Emfrenette, sorry to hear that you are not feeling too good. It sounds like an inner ear thing to me. Do you feel sick at all with it? I do get clumsy and topple over at times but have never really discovered why. Your balance and ears are something that needs to be checked regularly so lets hope you find some answers soon. xx

Thanks for your reply . I've actually noticed alot of loss balance issues or sometimes I feel like for no reason I was pushed type of sensation when I'm just standing still. My family told me It sounds like i did have vertigo .. but she never really tells me if I do have vertigo . But she does day . With vertigo its sometimes hard when your doing alot of looking up and then down wich is repeated motion I do at work . And some days I just lose balance i explained to her so she brushes it off like yes that will tend to happen when your doing this type of activity . Nothing i can do to avoid the situation .I try to just not move my head so quickly but it's been hard lol

Hi Emfrenette 😊🌸🌿🦋

I’m sooo very sorry about your suffering.

I have your symptoms too.

I have bilateral Meneires disease. Vertigo/water sounds in your head nausea/vomiting bilateral ear ringing balance loss room spinning even in my sleep.

I have pinched nerves in my neck and shoulders trapezius that leave numbness/pain inability to use my arm and hand. I also have neck scoliosis and EDS plus the FM.

so many conditions can produce overlapping symptoms.

It would be very helpful to.make a record of your symptoms what activities you did the dates and your blood pressure (always empty your bladder before taking your BP).

List all the meds you’re taking including over the counter.

Keep this chart and all your medical tests reports plus your daily symptoms in it.

Food and mold allergies can trigger vertigo. Also blood flow issues to your brain.

If your diet is high in salt you can retain fluid in your inner ears and cause nausea vomiting and vertigo. High blood pressure too.

Take this chart with you to every medical appointment and hospital visits. This will be your proof and may lead to the answers you’re looking for about your health.

Best wishes for getting it sorted.

Take care. Abundant blessings.

😊🌸🌿🦋🙏🤗💗😘

Emfrenette
Emfrenette in reply to honeybug

Thanks again for your reply , I feel I'm always feeling different symptoms and km always afraid something is more serious I just went to the walk in clinic because my right arm had gone completely numb and I couldn't move it on sat , this weird sensation in my head has me worried it started just feeling pressure when I would bend down .. now its if I lay my head a certain way or watch TV a certain position I can hear this seashell type sound throughout my head and in my ears but I feel it's more inside head . How do you get all the right tests done for pinched nerve and scoliosis and that .. my doctors are very slow and I feel they dont believe anything I say . The walk in doctor I went to yesterday though made an effort at least to leave a note to my family doctor to refer me to go see a neurologist . Because the migraines numbness in arm and now the fullness in head is worrying her a bit . It's so hard to stay positive all the time with all these things going on. I just feel frustrated. Today is yet a new day !

You’re welcome Em. 🌸🌿

I’m sooo sorry you are having so many different symptoms.

Here in the USA 🇺🇸 we don’t have national but private insurance for those fortunate to have a job that offers it. I am covered by my oh’s insurance. Our insurance was primary through General Motors car corporation. The insurance was excellent and all doctors/hospitals accepted it with excellent benefits. Our wait time is very short for doctors and hospital services a couple of weeks to a month or so.

We choose our doctors. Ive been having hospitalizations testing treatments surgeries therapies since childhood.

Your doctor just orders tests or PT surgeries physical aids like I have a short leg so I need special shoe inserts and leg braces. Whatever you need if your particular insurance covers it you can get it done etc.

I feel sooo sorry for all of you with your NHS and the difficulties I read about trying to get most things accomplished.

I can understand why you have frustrations and depression over getting anything done.

I’m truly sorry I wish it wasn’t that way.

Best wishes xxx

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