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Head pressure support group


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I have bad head pressure almost 24/7.  I was diagnosed with Lupus Encephalitis in Jan. 2021.  My brain is swollen inside my skull making me feel really bad all the time.  I wonder if anyone else has bad head pressure too and if they've gone to a doc to get a diagnosis about it?
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Hi Beckster

 

 

As u know… I have bad head pressure, too.  Something is wrong with the left side of my jaw which puts pressure on my head and also pressure on the eustacian tubes in my ears.  No official diagnosis yet but when n got examined at the dentist n recently the orthodontist… who took an imprint to make a splint for the uppers to see if that will improve my jaw.  j

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Hi Beckster

 

 

As u know… I have bad head pressure, too.  Something is wrong with the left side of my jaw which puts pressure on my head and also pressure on the eustacian tubes in my ears.  No official diagnosis yet but when n got examined at the dentist n recently the orthodontist… who took an imprint to make a splint for the uppers to see if that will improve my jaw.  j

If your jaw has shifted from muscle spasm, then this is local dystonia, most likely. I have muscle spasms all over my body from head to toe and my jaw is one of the worst places.

 

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My head pressure is caused by my damaged nerves and blood vessels in my brain and I believe it's inflammation from my diagnosed Lupus autoimmune disorder.
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  • 2 weeks later...
I have horrible pressure in my head and ears. I also feel very off balance. I am doing cranial sacral therapy which is a form of physical therapy and it helps. I did this when I had the same symptoms a number of years ago form going off another med.
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I'm sorry to say I'm in the head pressure club! It's so awful. Woke up this morning with a big headache that I haven't had since acute. And ears ringing louder/ popping throughout the day. It's late evening and still going. I've had this head pressure before but it feels a little different coupled with this headache. Maybe this symptom will go away for us real soon. Hugs!

Sorry Becks. This makes me sad to read your struggles. Big hugs

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I don't get a headache like it's aching.  Just head pressure inside my head like it's going to explode.  Lying down or reclining is the only thing that really helps it.
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My doc looked at previous specialist consult documents I had given her and also observed my symptoms when I was in her office.  I kept telling everyone to be quiet and that I couldn't process anything anyone was saying and I started to cry.  She looked at me and said, "You're overwhelmed."  I didn't have an MRI or any special tests when I was in her office.  She wanted to refer me to an Immunologist, but I don't have OP insurance.  IMO, head pressure, for me, can't be anything but encephalitis.  She could see that I had Lupus Encephalitis.
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Sorry Winnie to hear about your head pressure issues. The only advice I can give you is to monitor your diet and see if it improves your symptoms. Laying down relieves most of my head pressure too. It's the worst when I stand up. Its like my brain doesn't want me to be upright. After just a couple of minutes I have to lay back down because my head symptoms are too much. My head symptoms have been the ones that's been ongoing since the end of my taper. I'll be so glad when it's gone for good. They've had me bedridden for so long and can't ride in a car. One month and half ago it pretty much left. I was so happy and thought ok it's gone for good. I started riding in the car plus doing other normal things. Now it's back with a vengeance. Hopefully it will leave again real soon. It wears me out!
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I've had bad head pressure now since I got off the benzo's and Z-drugs in 2012.  No wonder I'm depressed all the time.  I've been suffering way too long.  I'm lying on the sofa on my back all evening and night every single night and only get up to get a snack and some milk. 
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I feel so sad hearing that Becks. I know you've been suffering a long time. This head pressure pulling sensation is so debilitating. It feels like a magnet. I notice as it goes into varying degrees of intensity I always get loose stools. When it's real tense, it's so hard to sit on a toilet especially when I'm also boaty and pulling. Did you have the magnet pulling sensation too?
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Sorry Winnie to hear about your head pressure issues. The only advice I can give you is to monitor your diet and see if it improves your symptoms. Laying down relieves most of my head pressure too. It's the worst when I stand up. Its like my brain doesn't want me to be upright. After just a couple of minutes I have to lay back down because my head symptoms are too much. My head symptoms have been the ones that's been ongoing since the end of my taper. I'll be so glad when it's gone for good. They've had me bedridden for so long and can't ride in a car. One month and half ago it pretty much left. I was so happy and thought ok it's gone for good. I started riding in the car plus doing other normal things. Now it's back with a vengeance. Hopefully it will leave again real soon. It wears me out!

 

LadyDen you may want to look into cranial sacral therapy. It helps me so much with this head pressure and in the ears as well as the dizzy and off balance feeling. It takes time for it to heal but it really helps so much.

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Ladyden,  I don't have the magnet pulling sensation, just overall head pressure.  If you read some of prettydaisys posts she used to talk alot about her head pulling to the left all the time.  She doesn't get on the forum anymore though.
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GodsGirl I appreciate the suggestion. I'll definitely check it out. If it helps even a little that's worth it.

Becks thanks for directing me to someone else who has this. That's what I've been looking for. It seems most have the boaty or dizziness but not the magnet pulling sensation.

How's everyone doing today? We've had a few days of rain. It's still raining this morning. I love the calming effect of it. Especially this morning as I'm trying to shake off this dread and cortisol surge wave.

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I have bad head pressure almost 24/7.  I was diagnosed with Lupus Encephalitis in Jan. 2021.  My brain is swollen inside my skull making me feel really bad all the time.  I wonder if anyone else has bad head pressure too and if they've gone to a doc to get a diagnosis about it?

 

I had extremely bad head pressure many years ago. It was caused by a Lyme coinfection called Babesia. I had the Babesia duncani strain and tested positive through the Sonoma County Health Department. Your average doctor will not know about this. You need an LLMD (Lyme literate medical doctor) not to be confused with an infectious disease doctor.

 

Lyme is frequently misdiagnosed as Lupus, MS, etc......................................

 

I had Lyme encephalopathy in addition to Babesia which also causes encephalopathy. Your doctor will not diagnose either of these.

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Hi buddies

I had head pressure, tight band sensation and burning scalp for 9

Months or so. Small break and now at 13 months I’m hit with electrical

Zaps and tingling same as acute. Doctor wants another mri, I had one one in

Acute to rule

Our ms. I’m terrified it is ms this time. How can I have zaps

One year

Our from benzodiazepines !? Anyone have similar wave? Also, tested negative for lupus. An Ana is a simple

Way to rule that out..hang in there

All!

 

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Hey Lorri. Welcome to the thread and sharing your experiences. Having tests done eases the mind that you don't have anything serious going on. So for that reason, go for it. But many dollars, wasted time and ALL negative results nearly 100% of the time will leave the conclusion that it's WD. It presents in so many ways waxing and waning in an unpredictable way. You could have 2 people same age same weight same benzo same dose and taken the same timeframe. They each will manifest symptoms differently at different levels and different duration of a symptom. They both might have twitching eye muscle ( for example) but one may have it mildly only at night for a week and the other may have it all day with it stopping at night lasting for months. Goes to show how unique everyone is. Having said that, I notice that you're at a milestone of a year ( so am I). It's a funny benzo common occurrence for acute like symptoms to come back on milestones. I'm one of those who's having acute like magnet pulling again. And it sucks!!!! It is scary. It's frustrating. We must not feed those feelings because it will make it worse. While I'm going through this again, I've been focusing on when it was gone to combat being upset. If I had to bet money...id say those zaps are not MS. I'm rooting for you not to have MS. Please let us know your test results. Whatever they are I hope it gives you peace of mind. Best wishes!
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thank you ladyden! I so appreciate the insight and thoughtful words of encouragement and confidence in my over all health. hard to think I could be back here a year later after such a low dose and even harder to process potential MS so I am praying its just WD come to roost. I will of course keep the thread posted . MRI Tuesday. now I just have to battle these zaps that are keeping me up all night..

 

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Here's an idea...do you remember those prankster zappers you attach to your hand? They'd give a zap to whoever you shook hands with!  :laugh: pretend it's one of those and laugh at it  :D

You know the phrase " if you can't beat it, join it"

This concept is what I do for my intrusive songs. I stopped letting them upset me and jam to them! If it's a song I don't like, I simply change it. Not long after that it leaves.  :thumbsup:

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I did have Lyme in 2013 and took antibiotics for it.  I had the head pressure before I got Lyme so I don't believe I have some type of coinfection now.  I rarely go outside anymore to get bit by a tic or even mosquitos.
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So sorry Winnie. As you know I'm bedridden too most of the day. Not a fun club at all. But I had over a month of not being in bed. Came crashing down first of June. But I'll get back upright soon. And you will too. If you want some things to distract you while in bed, I'm an expert now!  :laugh:

Let me know by PM.  :tickedoff:

Becks that sounds terrible. I didn't know lupus had more than one type. Guess we truly can learn something new everyday. Maybe today will be a better day for you.

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Ajusta, what tests did you have that came back positive?

 

EMGS in leg show problems.

MRI of spine shows severe degeneration did not have at start of WD and cranial ligament laxity.

MRI of jaw shows ligament laxity and arthritis. I had no jaw problems before withdrawal.

Altered red & white blood cells.

Hormones are a big mess - including very high prolactin.

Urine prostaglandins high indicating MCAS.

Blood sugar is high.

Neuro examination shows lost reflexes in legs and positive babinski sign and loss of vibration sensation in low back.

 

Am waiting for paraspinal EMGS, another brain and neck MRI including check for CSF leak & intercranial hypertension and fir Somatosensory Evoked Potentials to check what is going on in nervous system.

 

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