Back of Head Pressure 24/7 for severa... - National Migraine...

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Back of Head Pressure 24/7 for several months and all over my head with weird head feeling

Likeabadstorm
Likeabadstorm
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For the past several months I have had constant non stop head pressure, started in the back of my head feeling like my brain stem in the occipital region is being squeezed. My ears are now sensitive with pulsatile tinnitus and ringing in ears as well here and there, and sometimes the right ear will sound like a snare drum beating super fast for a few seconds like it's spasms out. Any loud noise sets my ears off and makes it painful at times and the back of my head seems to tense up very tight and I feel faint at times day and even wakes me up at night. Last year I was diagnosed with migraine with auras and possible focal aware seizures or panic disorder with GAD. This headache pressure is intense and very bad sometimes I feel stinging zaps in my face and head. Just feels like everything is in a spasms and then it'll get tighter and I feel like I am going to pass out. Also jaw muscles will get extremely tight as well and sometimes it feels like something is gripping my throat making it hard to swallow and I just have to take deep breaths. It's hard to cope with. Hard to do anything. I went to an eye dr and got some glasses, went to dentist and will pick up a night guard on Friday, went to ENT and had MRI and MRA of brain, head and MRA of neck and all normal. I feel like I'll collapse and die. Nothing has helped OTC wise at all. Anyone experience head pain like this that just doesn't let up at all.

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jwilliamsb

I can only offer up my sympathy and tell you what I did to try to find a solution and manage my condition.

First, let me say I know how you feel, having suffered similar sensations periodically, even being diagnosed with both panic attacks and 'global hysteria' in my early fifties (as well as migraine, etc). Second, learn to relax - take up yoga, tai chi, mindfulness meditation, or get some counselling; whatever floats your boat and that you find easiest to do that fits with your lifestyle - you will need to get instruction initially, so take a class or find a tutor or a therapist. I'm very serious about that particular piece of advice...

Third, take a 4 week course of high dose Vitamin B complex, something like B50 (assuming you don't take it already)- if you smoke and/or have had a diet high in processed foods/sugar, or have taken lots of antibiotics, you may need to take it for longer. There is a link between so called 'global hysteria' and a deficiency in some of the B group vitamins, which I found out after seeing a GP turned dietitian. As well, antibiotics virtually destroy any Vitamin B complex in the body. I am a smoker - after taking B50 for 3 months, I never had that jaw clenching, throat locking, unable to swallow sensation again, though I do still sometimes get the sensation that my jaw, just in front of my ears, is swollen and I feel like a chipmunk or a hamster holding nuts in its cheeks or something. I also did not need the mouth shield at nights any more... not sure I ever did need it really, they give you those things on the assumption you're grinding your teeth or clenching your jaw at night. A relaxation routine before bed helps with that.

Fourth, and really, really important, find a good cranial osteopath and get them to give you a treatment, including on your neck and head, which may be causing some of the problems you describe, regardless of a 'clean' MRI. I attended one every six months for some years and it helped enormously. If you can stand the thought of it and can find a decent practitioner, acupuncture can help too, though its not a permanent solution.

Fifth, remind yourself that, however you are feeling, you are not dying, and this won't kill you - it will pass. Yes, it might come back again, but all things pass.

I still have pulsatile tinnitus periodically, but am now aware, as I've got older, there is a compression in my neck that cannot be put right without major surgery - at this time, the surgery is more risky than the intermittent problems my neck causes me, so I manage it by using diazepam at night for 2/3 days when its bad, which helps the muscles to relax and eases the problem.

Its probably worth thinking about your diet in terms of how healthy or not it is. If you can do it, a whole food plant based diet (whole grains, nuts, seeds, legumes, beans and tons of veg and fruit) is very helpful to the body and mind generally, though I do tend to refer to myself as 'slightly flexitarian' in that regard, because I eat meat (but never chicken or beef, mostly its lamb I eat) occasionally, about once a month probably, and oily fish about once a fortnight, mostly to get the omega 3 it contains. Dairy is particularly interesting; when I switched to whole food plant based, I stopped all dairy and guess what - my aura migraine disappeared completely. I do still eat a little butter occasionally, but never cheese, because it's cheese that really sets the migraine off. I use soya or nut milk instead and will never go back to dairy - its not worth the price of aura migraine, despite missing cheese terribly.

I hope some of this might be helpful... basically, the way I found through it was to take control of it myself and find my own way through it all, rather than continuing to expect the medics to do it for me ... very often, with these sorts of problems, they can't, they usually just dish out drugs. If you asked me to single out one thing that's the most important to do that might help a lot, find a good cranial osteopath.

Good luck

Miriam

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Likeabadstorm

Miriam,

Thank you for that wealth of information. I am only taking vit d and vit b12. I am so scared of a lot of meds and even vitamins because I am scared this may all be related to seizures and don't want to lower seizure threshold and have more (still in process of ruling out awareness seizures as I am alert the entire time with all he sensations) or it is severe panic and anxiety. Neuro thinks non epileptic but we have to do an eeg and catch episodes on the eeg. This will hopefully get done first or second week of December. He believes it is stress that is causing this pressure and I think it is the pressure causing me the stress and increased anxiety. :-( he said we could try amptriptyline, but that is contraindicated with seizures so why would I even risk it til we know and I don't understand why he would. He said it wouldn't, but if you look it up it is a no go.

I did try acupuncture for three months. Only got relief once and that was it. Then later during treatment i started getting the dizziness and faintness feel along with the pulsatile tinnitus. And the feeling of movement of going backwards when I would stop at a light in my car. All so scary and makes no sense to me. And has made me so scared. I don't feel normal anymore and everyday is a struggle. Crying every day too as I am so scared of dropping dead from it or having seizures and then possibly worsening seizures where I loss consciousness and I have a little one I take care of. Been a year dealing with all of this and no answers and I'll even get burning in my head face chest and back. Just feels like something is attacking my neurological system, yet tests have come back normal like MRI and MRA, lupus. There's still blood work I am sure that can be looked at like ANA but he doesn't feel it's necessary.

I definitely could improve my diet. I'm not overweight but I do eat processed food. It's just it has never bothered me before but now all of this is going on with me. Just hit me one day had a severe headache a year ago and flashing light in only one eye in the peripheral vision last year and it's been a rollercoaster abd downhill after all that. Numbness tingling in head and face and almost passing out increasing heartrate and blood pressure during those episodes. Would have to pull off the road and have gone 911 several times. Sometimes I'd get real hot and then cold after and I'd shake but I was always aware. Vision kinda going in and out while I felt like I was going to blackout or die. And then I'd be scared after and still not feel right, that is all how the anxiety started with these episodes. I was told Migraine with auras and possible focal seizures. First try with topomax, had adverse reaction and was in the hospital, scariest thing ever which gave me fear of medication.

I do try to mediate and relax when I can. I even soaked in a hot bath (rare I can do that) with Epsom salt, neutragena seasame oil and some bubbles for a hour. I even submerged most of my head in the water to help relax. It just seems as soon as I get up the head pressure starts right back no matter what :-(

I'll have to see if my insurance would cover an osteopath. I've considered making an appt with my gp and try PT maybe. Not sure if I want to do chiropractor, I don't like the neck popping technique. Freaks me out.

I went from someone who enjoyed doing things and hardly no fear to someone who wants to still do things but the physical symptoms are getting in the way, it's hard to drive now because I am scared I may pass out because how I am feeling nonstop and the pressure makes it so much worse.

I thank you for all the information. I'll have to look into the vitamins and see if neuro and endocrinologist ok it. My endo says no on biotin which I used to take.

Have you ever tried magnesium citrate (or any mg) at all? I did for a little while, but didn't seem to do anything. Didn't mess my tummy up either. But I would do high dose because I am scared too just in case, too much can hurt you and even cause death and since I fear that I fear taking too much.

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Likeabadstorm

And yes I have been going to therapy and I really liked her, she then left so I am wait g to see a new one.

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jwilliamsb

I don't like chiropractic for other reasons - they always want to do a lot of little treatments, which costs a lot more, whereas I only ever needed to go for one appointment every six months with my osteopath, and since I was paying for that myself, that suited me much better. The basic principles behind the treatments differ too... In the UK, treatments like osteopathy or Bowen therapy or any of the others which are classed as 'alternative' are not covered or even accepted as valid under the NHS, so you have to just pay yourself for those.

I've had bouts of dreadful dizziness down the years, such that I'd have to walk very close to a wall or risk falling over - crossing roads was impossible when it was bad, so I just didn't go anywhere for 4 weeks till it started to ease off. Now I just get the odd, sudden attack, or a feeling like I'm standing on a boat. To this day, I still rock gently from side to side when having to stand still in a queue or something - that way I don't notice the world seems to be moving slightly. I once walked across the Millennium Bridge in London, which was built around the year 2000... I got halfway and only got to the other side by clinging to the handrail, then had to sit down for 20 minutes to let my head stabilise. That bridge moves, very, very slightly, but move it does, and that's enough to set me off - no cruises for me!

One thing though - the 'seizures'. I've got a migraine brain, as they call it, and I suffered aura (visual disturbance) migraine for some years, as well as one hemiplegic attack. One of my sons gets strange episodes - he had two grand mal epileptic attacks as a child, associated with being ill, and as an adult, he does get weird episodes which were thought to be epileptic in nature, so was given epilepsy drugs. He even had a week in a special clinic, wired up, so they can record your brain waves to hopefully locate and prove a problem. Nothing... and the epilepsy drugs made no difference, in fact, one drug made it worse, so he stopped the drugs after about 2 or 3 years. He found out for himself that coffee, irregular marijuana or other drug use and drinking too much alcohol were triggers for these episodes. And then I read some research a while back that suggested this type of neurological malfunction is linked with migraine, in particular, aura migraine, and may be hereditary. Chances are he's got that problem because I am prone to migraine, especially aura migraine, its just it presents differently in him.

The reason I'm suggesting a cranial osteopath is not just because I found it very helpful, but also this - I once had to go for an MRI for my lower back, but I'd had this terrible banging, throbbing noise in my ears and felt like I was going to pass out all the time (as you've described, actually) for the previous few days and on that day. I went there, kept pacing up and down while waiting, the world moving about round me, my head spinning, thinking I was going to pass out any second - they laid me on the bed of the MRI, and propped my head up on a little rest, so my neck was stretched out at the back, with the chin tucked under and pointing down. The scan took 25 minutes - when I came out, that banging, throbbing noise had gone, and I felt more or less normal. So I strongly suspect the neck is a cause for a lot of weird symptoms, not helped by being tense and overly anxious ...

And yes, I take magnesium, not a particularly high dose - I take it at the same time as my Vitamin D and calcium, because calcium is better absorbed in the presence of magnesium - I just take it for my bones, not for any other reason now. But years ago, my GP suggested I take magnesium and calcium in a ratio of 2-1, so twice as much calcium as magnesium for both night cramps as well as reducing the risk of hyperventilating. Being asthmatic, we tend to hyperventilate at times, and that makes you feel absolutely awful - dizzy, faint, panicky. Whenever I was aware my breathing was a bit 'off' I'd pop a dose of magnesium and calcium and go back to sleep quite happily after half an hour or so.

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Likeabadstorm

The brain is such an amazing thing and strange all at the same time. I am fortunate that I don't drink, never have nor do drugs. So those aren't the triggers for me. Never tried any nor marijuana. My neuro wants to get epidiolex approved for me to try, but of course I am scared to. It is FDA approved here in the US for seizures and he wants to try it for non epileptic seizures as he believes this is what is going on. I am so scared and yes the faintness feeling is awful. My insurance will actually cover some homeopathic or alternative medicine. They even covered the acupuncture. I'll still check on an osteopath either way. It's scary and hard to live a normal life like this. Heck maybe I should just try tucking my head like that for twenty five minutes to see if I get any relief. I wish I didn't fear meds to much. But that first seizure med they tried to help with migraines with aura and possible seizure scared the death out of me and caused even more neurological painful symptoms and I am so scared another med will cause something like that again or lights out even. I hate living like this and I used to be so out going and adventurous. And now I am scared to even drive, but I do it. It's all cause of how I am feeling. Just not right.

I have had BPV before and that dizziness like hat before and was on meclazine for a bit to help, I couldn't function then and it finally went away and then a year ago all this started up. I do know my grandmother used to suffer with really bad migraines. But I don't know if she had auras.

I have never been do London, one day I'll make it there on my travels. If I ever can get back to being able to do it. I so hope so. Thank you for all your information and insight. I am forever grateful for it.

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Likeabadstorm

Also so sorry about your son having grand mals and now other weird neurological episodes. Did thy decide it was Migraine with auras or possible non epileptic seizures since the meds didn't work and normal eegs. Though sometimes some people do have epilepsy with normal eegs because where it is occurs is too deep within the brain for the eeg to catch I have been told. Sometimes epileptics have to try different meds and then sometimes none ever work and then they try other things if meds don't work. I hope I am not having seizures but I really don't know as of yet but fear it so bad and all the meds. I just want my life back and to wake up a feel ok to do things and not be feeling like this.

My grandfather suffered from disabling anxiety and panic before he passed and was put on disability because of it. Meds and all were not working and it hit him all of a sudden and he was one to do a lot of stuff and enjoyed life and hen he was crippled by it. He had bad physical manifestations as well. So wish he were alive to ask him all he felt. I was so young then I didn't know what anxiety or panic was and never did really til this past year honestly. Never knew it could be so so so bad.

Does your son feel ok most days or do they happen frequently and affect his daily living?

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jwilliamsb

Well, that's just it - he's not on any medication at all, hasn't been for over ten years, and the only time he has an episode is if he breaks his own rules, i.e.,, no coffee, not too much booze and no marijuana. Actually, if he did marijuana all the time or at least twice daily, he wouldn't be affected by it - its only because its occasional it causes a problem. When he was smoking pot daily for a year, he had no problems at all, it only started again after he stopped. And these days, full spectrum oil extract from cannabis is a very effective treatment for some children with intractable, untreatable epilepsy, in fact, for them, its the only thing that works.

When he had the two grand mal attacks, he was only 5 and 6 - they were exactly a year apart. The first one was linked with a very high temperature from some horrible virus he'd got, and the second was at the start of whooping cough. He had brain scans then and they found a focus in the temporal lobe - but no evidence of that in later years.

I'm glad he's not on any medication - unless its absolutely essential or life saving, there's always a price for a medication, and I don't mean financial, which is sort of what you're saying about having to take medication. I never took any meds for my aura migraine either, nor my vertigo, though the aura migraine was getting so out of hand at 3 or 4 a day, I was reluctantly considering asking for some. But then I changed my diet for a completely different reason, giving up dairy and it vanished... guess I was lucky that it was something so simple as never eating cheese or dairy again. I did wonder if it was because I started taking CBD oil (not full spectrum) all the time, but I did a test to check by eating cheese twice in a week, and I had an aura migraine, so its cheese.

Either way, sounds like you're stuck - fearful to try anything medication wise (for which I really don't blame you, heck, I refused chemotherapy recently because its so toxic and I know it won't cure me) yet fearful of remaining as you are. You've got two choices, as I see it - find the money and try alternative medicine and treatments, or try what the medics offer you, because staying stuck isn't an option for your long term health, and its a horrible place to be - I know, I've been there too. Fear is common to all of us and when it takes us over, it is paralyzing and you end up in a prison of your own making. Life is for living, but sometimes that's very difficult because it means taking risks when you're in the midst of fear ... or taking a chance, whichever way you choose to view it. Courage, my dear... you will find a way through it.

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Likeabadstorm

Money isn't the issue, they tried a seizure med once for the migraine and possible seizure and I had an adverse reaction to it that landed me in the hospital with them pumping meds into me and they never seen a reaction from one dose like that and called poison control. I thought I was about to code and I was on fire on thir inside from head to toe and I turned blood red and heart rate and bP kept going up and and then would come down and it was coming in waves and I would almost pass out each time and I could tell the doctors when the waves were coming and when it would hit. I felt everything. Doctors were talking with each other and had the code cart there if needed. Imso that gave me extreme fear of meds from that point on. and my Lil one had to witness it. So scary I fear for my life that night. Made me scared to take the OTC meds I used to take. The epidiolex is CBD oil for intractable seizures but I am scared I'd be allergic to it. I am sensitive to meds and have lots of allergies and that one dose of topamax but the fear in me so bad. I know I am on a fine line I need to get better for sure. And I am going to have to do something at some point. Eeg should be done again in December. I fear seizure meds and anti depressants meds too because the side affects it the adverse side effects and all. I want help but it scared to try anything and it is a horrible place to be. If it weren't for that med and what it did to me I would have tried something by now. But that med greatly impacted me in a negative way and I have to somehow over come it. Took me forever to try a Tylenol again, then Motrin and the Aleve, then otc migraine med with Tylenol aspirin and caffeine (which none have helped my head at all. It's just the fear that affects me.

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jwilliamsb

If he gets Epidiolex approved for you, grab it with both hands, unhesitatingly and take it - seems like its fairly natural, not mucked about with by the pharma companies too much, so less likely to cause you problems. I just looked it up - it doesn't have any thc in it, its just cbd, so you won't even feel high, though that's a bit odd - I know the most effective treatment is full spectrum cannabis extract, meaning cannabidoil and tetrahydrocannabinoil (thc) together. The cannabis oil I take is just cbd, strength is 60%, but that's all that's in there and its not made by a pharma company; I too have a very healthy mistrust of pharma companies and their products, having had more than one adverse experience just with antibiotics. I think you're safer trying epidiolex or even Rick Simpson's oil than standard pharmaceuticals.... fingers crossed it works!

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Likeabadstorm

Thank you. I have to do something but scared to death. Sad I'm in his state but I am.

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jwilliamsb

I know, I get it - that's why I refused chemo, I figured this cancer's gonna kill me anyway,, it was found way too late, so why put myself through the horror of chemo - my kids are grown and flown, thank heavens. And I was really nervous about trying CBD oil too... made me tired initially, but its fine now, I don't even notice it.

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Likeabadstorm

I am so sorry about the cancer. My step mom did the same thing m. She actually stopped the chemo because she said that would kill quicker than the cancer because it made her deathly sick. She changed her diet and started some other stuff and she is still here and she is in remission.

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Likeabadstorm

Glad the CBD oil is helping you as well

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jwilliamsb

Glad for your stepmom - my oncology department is surprised I'm still here! I'll go when its my time, whenever that is, like we all do. Take care

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Likeabadstorm

So true. Stay strong and tough as you are. We tell her she's a tough piece of leather well put together in any kind of weather lol.

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