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Please read/lengthy...head twitches/swaying/dizzy

Hello all. I am new to this forum and my story is quite lengthy, but I am at the point where I need to share and see if there is anyone out there who has experienced anything similar to what I am.

I am 35 years old and 17 years ago after I had my first child I started to have these weird sensations in my head ( I cannot even remember exactly how they felt) but they scared me enough that I would start screaming and grabbing my head. If I do remember correctly, it felt as though my whole head was moving in the inside and pulled me to one side. I remember this happening in church while I was deep in concentration listening to the sermon. It came out of the blue and with no warning. My mom took me to the doctor and he said that I had an inner ear disorder and did not prescribe anything. The feelings went away and throughout the years from 1990-2004. The only times they would happen would be when I was deep in thought or staring at the TV or just daydreaming.

In 2004. I was diagnosed with Anxiety and Depression and given Paxil. After taking it for several days I started having crazy side effects that made me feel like I was losing my mind. I was immediately seen by two different psychiatrists who both said I definitely have anxiety but do not have the depression and had me stop the Paxil immediately. I was given Vistaril to take as needed and within the first year I only needed to take about 3. I went to cognitive behavioral therapy too.

Once I developed the anxiety I noticed the funny head feelings had come back and would happen when I was in a stressful situation only. Once I got out of the stressful situation they would go away. I also started not to be able to go into stores anymore. I also started going back to college online and I noticed that while I was doing homework on the pc and my mind was overloaded that I would start having the head feelings and not be able to concentrate or even do my homework because they dizziness head jerks aggravated me so much. Needless to say, I had to stop. I also would get this feeling when we would be out in a crowded area with people I didn’t know.

In 2005 I was sitting at my desk again and was pregnant again and all of sudden while working at my pc I had the same wave of movement in my head that scared and/or jerked me so much that I felt like I was going to fall over and I grabbed my desk and slowly brought myself down to the floor for fear of falling over. I would have these feelings periodically while washing dishes or cooking over the stove. The difference in my life was a new baby. I had a new job title that I got at the end of 2004.

Jump ahead to December 2006 and I found out I am pregnant again (unplanned). I am nervous and wonder “what will everyone think at work?” My husband said who cares what they think we are married. And he is right. But because I am such a fearful person I started thinking what if I die with this pregnancy when I am having him. I constantly think like hat and though like that with each of my pregnancies. I worried non-stop with this pregnancy and the head feelings and dizziness and head jolts started increasing a lot right around my 6 month. They started to get worse (as was the stress at my job) to the point where I would have the head jolts and head swaying quite often but ONLY at work….sometimes still in the kitchen and also in the shower. Eventually, the got so bad that whenever I would get up from a sitting position I would get kind of lightheaded and feel like my head was being pulled downward. I started holding on to the wall as I walked down the hallways. I also started to feel like I was falling off the toilet when I was at work and have to hold on the walls to make sure I didn’t. This never happened at home. As soon as I would walk out of work I would feel better.

I had my baby July 16 and immediately after I had him, something changed for the worse. The first time I had to get out of bed to use the restroom I started the “what if” thinking I was going to pass out or fall when I got up. I told the nurses this and when I got up I think it was all in my head, but by legs felt like they were going to give out or either I was too scared to stand up straight and stood up with my knees slightly bended “just in case I fell.”  My life has been a living hell since that day with anxiety if this is what is wrong with me. Since that day of my son’s birth 2 months ago, I have been a pure mess. Every single day from that day I have lived in the worse fear I know. My symptoms become 10 worse and my head is doing this jerking, swaying, dizzy feeling ALL DAY LONG EVERY SINGLE DAY.  My husband had to help me do everything for about 2 weeks. I was afraid to getup and use the bathroom by myself for a long time. It would take me about 15 minutes to get up the nerve to get up off the couch for fear of passing out or falling over.

I saw my regular doctor 4 days after giving birth and she was 99% sure it was BPPV (inner ear disorder). She prescribed meclizine which made me worse. She also wanted me to get a cat scan just to be sure and referred me to a neurologist just to be sure. I couldn’t do the CAT scan for pure fear of passing out because of feeling the blood rush to my head when I laid down flat. I was a nervous wreck. Of course my worst fear all these years is that I have a brain tumor/aneurysm. I did see the neurologist who did an exam on me and told me that I have nothing seriously wrong with me and I have what is called psychogenic dizziness and he prescribed Buspar. Of course I had to go online and read all the side effects and saw fainting as one and never filled the prescription.

I went to see and ENT and eye doctor and both say they cannot find anything wrong with me. My eyesight is the same as it was 6 years ago.

I started back to work this Monday and it has been pure torture, I can’t do anything at all. My head feelings and now blurry vision are unbearable and I cannot function. Before I was pulled out of work like I said I was getting these head feelings but if I picked up my laptop and went into a side office to work it would go away enough for me to work and go away completely once I left work. Now if I pick up and go into a side office it doesn’t go away completely, I still have a hard time working. When I leave the building I am better, but once I get home it starts all over again. I had a bad episode yesterday at work where I got up and felt like my head and face went numb. I panicked and called my husband to come get me and we went to the ER. I did the CAT scan, EKG and lots of blood work and was told everything looks good. I was given an Ativan that helped me tremendously but was sent home with a prescription again for Buspar. I took it last night and have taken it today and of course I don’t really notice any change because I am still feeling the head sensations.

Has anyone ever experienced anything like this before and is this really anxiety? I keep questioning it because the anxiety I am having is because of these awful head feelings that make me feel like I am going to pass out, fall over, and die.

3 Responses
Avatar universal
hi yes i am experiencing more or less the exact symptoms u r describing i also have two young daughters and i also feel scared and that these symptoms r ruining my life ruining my happiness with my girls my life with my girls it makes u very sad an grumpy an very moody an its not fair i have a long term boyfriend an feel al loose him if i cant find something to help me ,the weird feelings in my head that i dont think can be described as dizzy feelings which the doctors av seen keep sayin it is its more like sommeone is in my head holding my brain an giving it a good old shake every 5 mins i may get two or three days a month where i dont have this as for doctors huh less said the better is there anything out there that can help me i cant cope anymore i want my life back this is seriously killing me.......
Avatar universal
hi yep i have the EXACT same thing. Particularly the falling sensations when sitting and the feeling that there's something inside my head pushing and pulling and it drives me crazy.
I also have bad tension and tightness allover my head and temples. This is everyday no matter what situation im in. I also get the numb feelings in my head and its like my legs are giving way. I feel like im just going to fall over or drop to the ground. Even sitting on a chair at work I've actually had such a strong feeling of falling/dropping that I cant keep myself sitting upright and I collapse down and have to grab the desk.
Only just within the last 2 months the room will actually spin. One time I was sitting chatting on the bed with my sister and it was like my eyesight started jerking about and wobbling and the room started spinning. I fell to the side on the bed and was hyperventilating - i was terrified! Afterwards I just couldnt walk - i was swaying and was disorientatied and just couldnt balance myself. I had to grab the walls to walk to the toilet and was shaking/trembling. I went up to hospital straightaway and was just sent home with nothing!

Everytime I move my head or get up or sit down i get the jerks and twitches and swaying. If I sit and stare at the floor/pavement/road  it starts moving and floating which is really scary. I have been to so many doctor appointments and have had my eyes tested (no problems) and Accident & Emergency.   I feel like im standing/walking on a wobbly board or like im on a boat.

I have a neurology appointment coming up and my doctor signed me up for "chill out" education evening classes!?!?! (please..) It is so frustrating trying to explain to doctors what is happening because you just dont have time to explain everything and as soon as you mention a symptom like dizziness they switch off from everything else you say and tell you "oh it must be low blood sugar"....one doctor tried to give me medication for anxiety and panic attacks but i refused - i just dont want to become dependant on meds incase whenever i try to get off them i slip back into the same problems. Plus if it is just anxiety then meds only mask over the problem and i want to fix it. I just think if this is all down to anxiety then why is still happening when Im lounging about for example sitting watching a film, reading a book, lying in bed??! I completely understand where you are coming from as this is affecting my entire life and every day i feel im just withdrawing into myself and its harder to go outside in public or socialise because these feelings take over and I just want to hide away. Its becoming to difficult battling with it everyday.

I've actually booked a hypnotherapy session! the doctors are just not helping (or seem all that interested in helping) so I'm going for private hypnotherapy sessions - not exactly cheap (im actually getting people to pay for them as a birthday present for me!) but at this point i just think it cant hurt, its not pumping drugs into my system with scary side effects, and what have i got to lose! Because right now im worried its causing depression - sometimes i wake up in the morning and just cant bring myself to carry on. And no matter who i explain it to i just feel they dont understand, they dont get how scary and difficult it is to just do simple everyday things like popping out to shops - this is a massive ordeal to me, going down the stairs to get something to eat is this massive struggle and just standing speaking to someone even my partner is horrible! trying to keep my balance, stop my head from spinning, jerking, the falling sensation, aching, swaying.

one doctor said to me "you would not believe the things people suffer with when they have anxiety" one person came to see him was terrified because they were having a heart attack - palpitations, numb left arm, chest pains, couldnt breathe all this while they were sitting with the doctor - and it was anxiety. He said anxiety is a cruel mind controlling thing - it can convince you of these horrible things that are happening and it is scary because they are real physical symptoms. He actually said he's had MEN coming to see him because they are convinced from actual symptoms that they are PREGNANT. Seriously. Although he didnt help me at the end of all that it just sort of eased my panic with what is happening to me. Mind you it didnt stop any of it and I left the room still off balance, swaying, feeling like im walking on a boat and tension with numbness.  But it didnt go any further...i didnt actually fall or faint ..im still convinced i have a lesion, tumor, bubble or some blockage in my brain - what else could be causing this - but then i think about the pregnant men and the heart attack guy...

All i can say is just try a therapist, counselling sessions, hynotherapist just to talk about what is happening. If nothing else it will teach you to be able to relax yourself and get some stuff off you chest - which is never a bad thing. These people are trained to deal with problems with fear and anxiety and how it spins and grows and takes over. fingers crossed my hypnotherapy will help in some way.
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