I’ve had a set back of sorts…a few weeks back i was in bed laying on my back and could feel this sensation that a vertigo episode was just seconds or minutes away and yes…the room began to have a mild spin but instead of a vertical turn it appeared to be more of a feeling of horizontel like a merry go round. But it was fairly mild and yet… here it is 3 weeks later and i still haven’t got my equilibrium or bearings totally back and the inside of my head feels miserable…like a tight, Squeezed like feeling with back & forth Motion. When it gets this bad i refer to my head as a “Jello Head”. Also…this may sound a little off the wall but if feels as though something “knawing” inside my head at times. A very uncomfortable energy circuiting around in my head and that really aggravates me and brings my mood down. I have not had a set back like this in quite some time and overall i’ve been doing better. I know that this most likely will pass just like all the previous attacks i’ve had over the last 18 years. Even while laying in my bed this morning…two of my cats jumped on the bed and began to rough house and the motion on the bed really bothered me. I had to increase my benzo cause that is the only medication i take for this illnes…
If anyone can relate to my off the wall symptoms…i would appreciate any feedback.
Thanks everyone for your support.
ps. my Vestibular Migraine appears to mimic Benign Positial Vertigo…when i get the spinning episoses (most always in bed)
I’ve read that it can take people weeks to recover from vertigo attacks. My last one was in January, and it did set me off in a bad way for a couple weeks. That was the final straw that pushed me to start an SSRI again.
I can’t remember, what benzo do you take and what dose/how often?
As i’ve said, i’ve been dealing with this condition for 18 years…been there and done that. I have made a fair amount of progress over the years but once or twice a year i will have a small vertigo episode and most of the time i’m back to normal within a week. But this vertigo episode has set me back for close to 3 weeks now. Prior to this set back i was only taking a 1/2 tab of Xanex per day. I had to increase it to one or two tabs per day till things finally calm down. I’ve done numerous anti-depressants over the years including SSRI’s and they do not help me. Xanex has been my most helpful medication…but once in awhile for no know reason when i have a setback like now, the xanex doesn’t help me as much. When i see my doctor In June, i’m thinking about giving Klonopin a try.
Thanks Anne for your concern.
Sorry, I wasn’t meaning to come off as suggesting an SSRI Just relating that my vertigo attack scared me enough to try another medicine rather than continuing to try and work it out myself. Sounds like your latest vertigo attack has you suffering longer after the fact than in the past. Sorry to hear that.
I’m interested in the Klonopin as well, after reading from so many here how helpful it is. Ativan works when I need it, but does seem to give me a feeling like I’ve just crashed when it starts to wear off, almost a rebound anxiety at times. Not all the time, but sometimes. Klonopin sounds a bit more smooth.
yes these episodes set one back. I had one in Feb and am still feel the repercussions. Any idea what caused It? Dr S says these eps are like ripples in a pond, they just keep going so you need to arrest it with drugs.
Anne…i never thought you were suggesting an SSRI. Anne & Fiona, do you have any symptoms inside and around your head? My head never feels Relaxed…it always feels like it’s a little squeezed inside and in the temples + i feel Motion. Can you relate?
Most of the time i’m functioning around 70%…sometimes on really good days slightly more but deep in my heart i honestly don’t believe i’m ever going to make 100%…i really don’t. After 18 years of this nightmare and many, many medicatons over the years 100% normal is most likely not possible. I believe there is some inner-ear dysfunction going on…due to the Silent Migraine or something else. I’m certainly not a doctor but after having this condition for such a long time and given it much thought…that is what i’ve come to believe. I know that is negative but believe me for many years i kept telling myself i was going to reach 100 percent.
I"m sure this setback will pass…but i just feel so alone when i have a set back and most of my friends don’t quite get it. I don’t even refer to my condition to friends and family anymore as MAV…i just say, i have a “Vestibular Migraine” and to me that sounds about right.
Joe, I do tend to have a feeling of pressure/tension in my head. My left temple feels more of the tightening, and I wonder if that’s where a lot of the migraine focuses for me? It is weird because when I started Prozac, the left side is where I felt the burning side effect for a couple weeks. I think I just analyize every feeling and sensation with my head/ears and it drives me nuts!
But yes, I often feel like my brain is not relaxed, whether it be pressure/fullness or excited like I’ve had too much caffeine when that’s not the case.
I can see why you feel a bit hopeless after so many years, but I would like to keep the hope that we all can get to 100% eventually!! Then, I’m only at 2 years dealing with this so I’m trying to keep my chin up
yes Joe I have the constant rocking in my head.
As you know, you and I are similar, I have had this over 20 years and tried loads of preventatives. Like you, I now feel, that I will never ben 100% as I feel there is some ear involvement. When all else fails, try the one third to one half of a painkiller (paracetamol, codeine and caffeine) 3 to 4 times a day, see if it helps.
Having a bad phase myself at the moment, I believe it might just be the chocolate biscuits have got hooked on (same old same old. got away with them the first day and carried on)
God this looks like a bad advert on this forum, painkillers, caffeine and chocolate biscuits :twisted:
This is what having this condition for over 20 years does to you (have done all the elimination diet etc., years of being strict (did ten years of Rice Milk), budgie food for breakfast and polystirine rice cakes and now I am throwing caution to the wind :shock:
Grrrrrrrrrrr my first mini spin in 4 weeks!!! Knocked me silly this morning!!! :x
Am right with you there Muppo, just had 3 days of rotton migraine, now being followed with bad dizziness. This heat is not helping. I have to go out into town with family and put on my happy face as I stagger around :roll:
Joe, perhaps it’s the weather change right now. I don’t know where you live, but here in Michigan it’s winter going to spring, and that seems to play games with me when that happens.
Fiona…so you have a constant rocking in your head as well? I have what is referred to as the “silent migraine” cause i rarely get pain…only motion and occasional vertigo. I have the symptoms 24/7 and the only med that gives me some relief is Xanex. 1/2 tab on most days but on setbacks i take one full tab. Fiona…when the rocking increases does that mean the migraine is in full gear?
Anne…we both have the pressure and tension in the head which brings on Motion. I have this 24/7 and somedays are worse than others…have to watch my diet and stress. Is the pressure and tension actually the Migraine playing havoc? What i heard about Xanex and why it helps is because it decreases the motion in the inner-ear nerves. Anne, for me the pressure and tension is in my right side of the head/temple. Sometimes my good friend will massage my head gently and that can give me a little relief.
Greg…i was thinking that the other day. Normally we have very bland weather here in southern california but seems like were going from 90 degree weather for a couple days and then it dropos down to 60 degree weather and overcast for a couple of days. Not sure what it wants to do.
Ane and Fiona…what med’s do you use to decrease the rocking, tension and pressure?
Yes Christine…unfortunatley i believe the inner-ear is playing a bigger role than experts think. I believe there is som damage that cannot be corrected 100%. The pain killer your talking about…how does it help the symptoms?
Hi Joe, I’m sorry you’ve been going through this again.
I think the general oppinion is that the patients with migraine suffer recurrent damage to the inner ear due to vasospasm or some other mechanism that predisposes them to recurrent bouts of BPV.
So yes I think migraine symptoms can linger too, I know when I’m having a migraine due to my symptoms , one of these symptoms being “feeling of having too much coffee” :roll:
also see here, ncbi.nlm.nih.gov/pubmed/11667987
Not sure how the painkillers help the symptoms but they often do. I treat all my weird symptoms (used to have the tension in the temples and often the back of the head all the time) as if they were a migraine with pain. If I take too large amount of painkiller (which I have to for proper migraine pain) then I get the after effects of some dizziness as they restrict the vessels but if I take small amounts, it can take away dizziness, tiredness, nausea (painkillers take away my nausea), allow me to go out of the house. Weird thing with me, is, I dropped the caffeine part of the painkiller for 2 weeks and got dizzier so I have to have caffeine in a small amount in the painkiller.
i’ve had this for 18 years as well! i do not get headaches, i am dizzy all the time 24/7 and will randomly get the dizzy attacks on top of that- i’m guessing that is the migraine. i’m current;y on 125mg of topamax and klonopin when needed and i think you will like the klonopin- it takes away anxiety but does nothing for the dizziness fyi. i tried xanax (a small amount) and it did nothing for me.
about the inner ear thing, i think that is what’s causing my rockiness. i’m positive. if the inner ear specialist is saying my inner ear is fine, than does anyone have any other suggestions? mri is fine, but with the ringing, and i had an inner ear virus when my big bang happened, i’d just love to know what the root to the problem is.
laying down is bad for me too but it slowly adjusts. movement laying down is no bueno as well and pay attention to the weather as well. because of all the rainfall, it’s suppossed to be a bad allergy season, so not sure if you suffer from allergies like i do but i’m sure everything is all connected and not looking forward to that either-blah.
Hi ilovesalem, (don’t know your real name)
So you’ve been struggling with this form of migraine for 18 years as well. I don’t get headaches either…with the exception of an occasional slight stress headache or if i skipped a meal. I’ve come along way cause the Vertigo & Rocking use to be much worse and when i did have a bad spin i would almost always have to vomit. I’m very Motion Intolerant. For me personally after trying numerous anti-depressants and other benzo’s…Xanex has worked best for me. But here recently i’ve had a set back and the Xanex has not been helping me nearly as much. I hope the Xanex hasn’t popped out on me?? If that is the case i don need to give Klonopin a try. I don’t hear this description much from other Mav’rs but i feel as though my Brain or part of the inside of my head is being SQUEEZED which then brings of alot of Motion. The Xanex tends to lessen the tensed feeling in my head and also reduce the rocking motion. Laying down is bad for me but it doesn’t generally bother me as much as it use to unless i’m having a relapse then i have to double up on pillows. My right Ear or right side of my head is the more bothersome side.
Do you ever have your partner or friend massage your head/temples? Does that give you a little comfort? It’s certainly no cure but it makes my head feel a little better for a short time. I also come to believe the inner-ear is a culprit in this whole dizzy mess! I also have come to believe that a change of weather can affect our condition.
Joe, I just wanted to say that the head pressure and sense of uncomfortable energy gnawing around in your head sounds very much like what I have been experiencing for several weeks now. For me it is brought on by everyday head motions and gradually increases through the day. Mine isn’t an aftereffect of a vertigo spell since I didn’t have anything like that, just a gradual onset of motion sensitivity along with a head cold, that became worse and worse over the weeks. Sometimes I can move my head very slowly and feel the centre of energy shift places inside my head: sometimes in one temple, then the other, then in my cheeks, sometimes behind one ear, and sometimes in my neck. This feeling doesn’t have a consistent “sidedness” to it, it can occur anywhere in my head. I also feel a queasiness in my stomach, a mild diffuse headache, a burning above my upper palate and nasopharynx, and an overall sickish feeling.
Does any of this sound familiar to you, either in detail or just generally?
In all my years at the forum i don’t think i’ve ever had someone identify with the uncomfortable energy of gnawing around and insie of the head. Most nearly all the time Xanex helps to reduce this symptom and the motion that comes along with it but for some unknown reason on rare occasion the Xanex putters out and doesn’t help much for a few weeks and then it begins to help again. So you don’t have Vertigo Episodes? I can have the slightest half spin usually from getting out of bed or laying flat in bed and that can set me back for days and sometimes weeks. For the most part it’s my right temple and right side of head that is more bothersome but were all different. I love to have my partner massage my head and temples…if really relaxes my head and i believe helps to get the blood circulation flowing better. Sometimes i believe maybe the blood circulation in and around the head and brain are poor. I don’t have the burning feeling you describe but my head can feel slightly nauseatesd on a bad day.
Hey Joe - just read your description of tightness and ‘gnawing’ sensation. When I first got MAV in my teens I described the starnge feeling in my head EXACTLY like you say. I used the word ‘gnawing’, and I thought I was the only one in the world with this sensation!
I had two main sensations to my MAV which would occur at different times, morphing into each other. There was the ‘dizzies’, which was a sense of spinning or swaying in my head (no acute vertigo attacks in those days), and then the horrid headachey, tight feeling accompanied by the ‘gnawing’. I used to say to my mum it was like a rat gnawing my brain. Nice. The feeling could be all over my head or be worse on one side, sometimes behind my eyes or nose, sometimes at the base of my skull at the back. It was helped by massage (see your other thread on head massage where I’ve also posted).
Nowadays I have more of the spinning and swaying sensations alternating with tightness and pain. The gnawing thing is rarer but still happens.
Often it boils down to a choice of words.