Does anyone experience a squeezing fe... - Hughes Syndrome A...
Does anyone experience a squeezing feeling in their brain, like someone is putting their hands around your brain and squeezing it?
Hello, I can definitely say, that this is a new one on me... no I don't have this, although my migraines at times make my head feel very tense. However since the doubling of my aspirin this has improved considerably. Mary F x
Mary,
I know that you like me have sero-negative Hughes. I am on warfarin range 3-4 as I have had 3 confirmed and 2 unconfirmed DVT's. Can I ask why you are on aspirin? since I have been told that aspirin tends to cause stomach bleeds. Does the risk of a bleed outweigh the benefits of aspirin?
Love the site
Les
Hi there, although I have 4 other autoimmune diseases.. my APS seemed to flare up in pregnancy, had multiple clots in both legs 23.5 years ago. However since then no clots, although dizziness and severe migraines, so on aspirin twice a day. However, I am most careful with this, I always take it on a full stomach! This has been set for me by Professor Hughes. I guess at some point, If things get worse, that might change. I am very unwell, but it is difficult to tell which particular disease plays up the most. My daughter is also on aspirin twice a day, we both take 75 mg baby aspirin morning and night! We both keep a very careful eye. Mary F
That is an interesting idea! I have had ocular migraines with scintillating scotomas, but I have never had any pain. The neurologist found lesions on my frontal lobe which he attributed to TIA's from APS. So, while I have not had a stroke (thank goodness!), I have had lots of little mini-strokes over the past few years. I wonder if this squeezing is just a result of all of that...
Like you, I've been having ocular migraines with those scintillating scotomas, without any pain. But my brain feels like it is feeling squeezed when they happen, and I feel mentally dull. I usually only have one or maybe two a year, but I've had three this week, which is unusual. Gonna make a doctor's appointment to see what he thinks is going on. I have high blood pressure and am on medication, but low cholesterol, and no diabetes. I worry about the TIAs since my mom and grandmother had them before developing dementia.
Do you have a diagnose of Antiphospholipidsyndrome? I agree with you that you should see a Doctor and ask him to take the three antibodies required for a diagnose. Then look for a Specialist if you are positive.
I had those symptoms and also very high bloodpressure. At first I tried a low dose of Aspirin (75-100 g is enough) and when that did not help any longer I had to start Warfarin and it has now disappeared when INR at 4.0
Please let us hear how it goes for you!
Hello. Yes I have experienced this! None of my doctors had a clue. I discovered this book called "You're not sick you're thirsty, Water for Health Water For Healing" by Dr Batmanghelidj. I decided to increase my water intake and add some "unprocessed" sea salt like Celtic to my diet. No alcohol, no caffeinated products (chocolate, tea, coffee) which dehydrate. No more of these horrible pains. It has truly helped me. I wish you well!
I have experienced this. It is like wearing a riding hat that is too tight and you can't focus properly or think.
The feeling has not been so obvious since I started clexane but I do still get it from time to time.
I agree for the need for plenty of water, not giving up wine though as quality of life rubbish as it is!
HI...YES...I don't know if this is what you have - I would talk to your doc - but that's how my head feels before or after a migraine, sometimes during too. The "ax" in the head or most likely one eye is the worst, but the pressure on both sides is there. I put a ice bag with ice on it, rotating from each side, then to the back of my neck. Hope this helps.
debi in Fl w APS
Yes, I too experience this. Mine is always on the left side
thank you!! I just wonder if I'm lucky and my migraines just don't involve pain. It could very well just be a migraine. Interesting!
I quite often get this feeling since I had three bloodclots on the brain two years ago. When I mentioned it to the GP, I was told its probably just one of those things you get after brain trauma. It's interesting to hear that there may a another answer to what it is and that I'm not just losing it. This site is so useful and at least it's good to know that your not on your own!!
Yes, I do too
I feel so saddened when I hear how many of you have had clots and strokes and TIA and are NOT on Heprin like Lovenox or Fragmin or the such. As soon as I had my 3rd DVT I was put right on it. My hemo said I had Coumadin Failure, that it was not going to help and must go on something stronger for life. I have had no more DVTs, no more Embolisms, never had a TIA or stroke. Face it - this is serious. Tell your Doc you want stronger meds.
debi in Fl w APS since 2001
I have a similar symptom since my cerebral stroke and a bit before. I describe it as a "heaviness of my head". It is as though my neck just isn't strong enough to hold up my head and I would often find my head unconciously tipped to one side or the other. My stroke was in 1995 or so and that event led to a diagnosis of Central Nervus Sytstem (CNS) Vasculitis (diagnosed via brain biopsy) which was treated with heavy dose steroids (80 mg prednisone/day) and Chemo (Cytoxan which caused current bladder cancer) and the "heaviness" has continued. My doctors cannot explain it other than to pacify me with the fact that many people portray many different sypmtoms after a stroke. That stroke left me with severe stuttering and a right hand tremmor, thankfully controlled with Clonazepam. It also left me with a weak left side which is aided by a cane. Apparently, this head symptom is common among APS patients as I read above. My maintenance is one 325 mg. aspirin/day and a duralgesic for bone and muscle pain along with Vicodin as necessary. My instinct is anything stronger would not be worth the complications of that drug (Warafrin or coumadin) at my current age of 60, and the complications of my other diagnoses. The best thing about this column is that you can acquire much verification that you are not crazy or lazy or stupid. What you perceive IS your truth and you must educate yourself for a serious battle with disease. Mentally, physically and spiritually. Best of luck on your journey. I have found this site extremely informative and very valuable in its support.
Thank you for posting this information. When your head feels heavy do you also have "mental fog" or foggy, like what is described by lupus fog? I never knew there wa a name for it! Thank you again.
Xx
"The best thing about this column is that you can acquire much verification that you are not crazy or lazy or stupid. What you perceive IS your truth and you must educate yourself for a serious battle with disease. Mentally, physically and spiritually. Best of luck on your journey. I have found this site extremely informative and very valuable in its support."
AMEN!
Seriously?! Oh my, thank you! I will read it too! Where do I find it?
Yes, that's a great description!! I contribute mine to migraines. I also have the headaches just on the left side too!!
Xx
Hi Mommaleda: In answer to your direct query to me and my "heavy head" symptom. I am duel American/French and the term "foggy brain" I just learned in this very site along with "sticky blood". I surmise foggy brain means feeling slowed in thought, humor, as well as word finding skills and forgetfulness. A minor loss of common sense. This I have experienced myself. At one time, I was on many medications (over 30!) and finally got the courage to walk into my doctor's office and tell her to wean me off all medications except those for pain and comfort. After a month of weaning all but six medications I began to feel better. It took me a while to recognize it. But it was true as I documented in my journal. The fewer medications I was on - the better I felt. I think sometimes you just have to clean out your system. Because the medications themselves have side effects (diabetes in particular) that are not predictable. It is important to document daily to see what works and what confuses. What they thought was severe migraines in me turned out to be CNS vasculitis. The symptoms are very similar. The headaches in CNS, however, are attributed to nerves spasming and dying off in remote parts of the brain which may, for example, make one put the butter in the oven. Not as a habit, just a mistake, but possibly attributed to what the Brittish call "brain fog". In my younger, way younger days we hippies called it "spacey", referring to floating way out there in space. I do not know, nor do I think the field of medicine knows, if this is a common symptom between APS and CNS Vasculitis but the longer I study it the more similar the diseases seem. Both involve excruciating headaches (greatly aided by medical marijuana, although I do not know where the Brittish sit on medical marijuana issue politically). American doctors are unanimously FOR the use of it for chronic pain or Hospice issues. Both diseases involve muscle pain/cramping, uncontrollable tiredness, swelling and joint tenderness and more I am sure. I don't know who stated it but the description of "wearing a hat that is too tight for a long time" is a pretty good description. Only usually excruciating pain preceeds, accompanys or proceeds it. Sometimes this is left sided only. When this happens to me I am pretty immobile. I have a safety routine I go through because I know that soon I will not be myself. I lock the doors, turn off the stove or iron, I don't answer the phone because I may not remember who called or what I said. I sit myself down where I cannot fall or trip and know that eventually, this too will pass. Prayers, hugs and smiles..sorry so long.
I have experience this off and on all my life. Theres no pain. Nothing wrong with me physical. I could be watching tv, looking at comuter, at work and it feels like someone is walking around with me with there hands on my head. i could feel the painless pressure of something squeezing my and head. I never question I just pray.
I am experiencing some pinches here and there also when I walked would hear a noise in my head every time I take a step. This is really scarring me . had a mri nothing now sending me to a spinal dr since I have bulging disc and and pinched nerve in neck . anyone with helpful information would be great also had burning in head just don't know what is going on !!!!
Yes I do!!! I have reverse neck! That an X-ray confirmed. A chiropractor was helping a lot. Haven't been able to go Lately due to insurance. I believe it's related to nerves ect. Maybe pinched nerves. I also get pain in shoulder all the way around chest area. Not deep more like muscular. Ugh awful. But the scariest part is the pressure in my head and foggy feeling. Feeling off ect. I've done a lot of research and damage to disc can cause a lot of crazy symptoms.
Also, in my research. I also believe it's related to tmj. Believe it or not tmj can cause a lot of dibilitating symptoms. And scary ones. Then anxiety kicks in and really takes over. Ugh I found that tumeric a natural spice helps a lot with inflammation ect. I don't do pills
Do you have APS (Sticky Blood)? Here we have too thick blood which we must thin before we feel ok.
Kerstin in Stockholm
Ohhhh, maybe I'm on wrong thread. No I don't. I was just answering the above question I saw about pinched nerve in neck n
You talk of inflammation... If you have got APS you can put your own new question on our site and you will get answers from our members. You answered a 4-year old question.
Kerstin
Did you ever figure it out? I am experiencing the same thing and more. Thanks
You have now answered a 4 year old question. Perhaps you will therefor not get any answers on your question.
I wonder if you have got APS? If so tell your Specialist about it. Or tell us little more about your other symptoms of APS as this is a site for Hughes Syndrome (APS).
Best wishes from Kerstin in Stockholm
Hi, I'm experiencing it right now. it's a pork tape worm. T Solium. Cysticercosis. Most doctors don't know what this thing can do. If you tell them what it's doing to you, they will send you to a psychiatrist.
I just experienced this brain squeeze to the left side while attenting church on yesterday. I also, experienced my left side going limp for a minute, Therefore, I left early, and went to the ER where they found nothing wrong. Nevertheless, I received a blood test and a CT scann. In addition, the day before I was in bed all day due to a gases stomach pain. Not sure how it relates.
I also feels like that but can u tell me in detail about thii
Yes I had this for around 4 weeks .It got that bad that I went to the hospital. An MRI scan showed it was a brain aneurysm.I had to have brain surgery I was petrified as they're are risks such as going blind with operation .Stop pissing about on here looking for answers when you could have this and have a stroke .
Hi Ant2301,
We all have Hughes Syndrome/Antiphospholipidsyndrome on this site. A tricky illness difficult to diagnose.
If you think you have got our illness (you have joinded today) I suggest you put up a new question and tell us a little about yourself and where you live. This one is 5 years old.
Best wishes from Kerstin in Stockholm
Yes i feel like someone put hands to my brain and squeezing it
Please give me the solution
Hello Faheemkham,
I see you have just joined today, but have not stated whether or not you have Anti Phospholipid Syndrome.
I hope you have learned a few things by reading responses.
I want to share with you a few things of importance.
Firstly this is a forum for patients who have anti phospholipid Syndrome. ( APS) . It’s also known as Hughes Syndrome. I do not know if you have been diagnosed with this. If so, please update your profile and post your own, new specific question. Here is a link to learn more about APS:
If we can further help you specifically regarding questions or concerns after reading about it, let us know.
Otherwise I suggest seeking the advice of a neurologist regarding your headaches.
Best of luck to you.
Does anyone else get severe pain in hands with no swelling?
Does anyone have experience of kidney problems and APS please?
Does your INR level affect the way you feel?
