PLEASE please anybody tell me they know what i can do to relieve this nasty pressure in my head. Its crazy and its making me crazy. It also makes me irritable, dizzy, almost like a slight concusion. I would expect this after a head injury.
I hope its due to lyme so that i have a fighting chance to get rid of it after i start treatment. Its so hard....
Anyone had this experience or know if its related?
Posted by Pure Lymie League (Member # 10421) on :
It is the Lyme, and it will go away with antibiotics. I always said I had a giant crab sitting on top of my head with its giant claws hanging on either side of my face.
It also felt like I was hanging upside down letting all the blood rush to my head. Hope it goes away soon for you. Sara
Posted by Aniek (Member # 5374) on :
Is this a new symptom? Have you mentioned it to your LLMD before? If not, I would get it checked out because that can be a symptom of encephalitis...which could be caused by Lyme.
As far as helping, it's bad for you, but diet cola helps me. Something about the combination of caffeine and aspartame.
I generally try to stay away from artificial sweeteners, but I found diet cola is the only thing that helps when I get headaches, dizzy or head pressure.
Posted by Foggy (Member # 1584) on :
I've had this for 5 years. Sorry to say nothing has helped, including IVs, Mepron, CSM & various oral abx combos.
Drives me nuts, too.
My MRI & PET were neg which is puzzzling given my head feels like it's in a vise.
Another LLMD said mold expose can cause this so it's something I'm exploring.
Posted by panicbegone (Member # 10760) on :
Thank you folks. Its darn hard to take this. If it is encephalitis and it is caused by lyme...is it fatal? Will this pressure that i can barely take get worse with herxing? Why oh why.
Posted by Boomerang (Member # 7979) on :
That is one of my husband's main complaints....he has the pressure most of the time. The ABX made it worse at first, but I think he's feeling less pressure now. He says it isn't really a "headache".....just a pressure feeling.
He's had MRI's and catscans, all clear.
He's on the mino and flagyl now, so hopefully the pressure will ease for him.
God Bless you and good luck!
Posted by luvdogs (Member # 9507) on :
Hi Panic,
This was one of my early symptoms - gone for many years now. It used to feel like the pressure was building up in my head so badly that I thought my skull would crack open. At one point I actually felt some sort of a pop or bursting inside and it was then that I felt the Lyme had really entered my brain. I think that was when the seizures started.
Not to worry though, I was NOT under treatment - was still in the misdiagnosing stage - the "tropical disease of unknown origin without a cure", plus "MS" etc... So I was not on abx. So get on abx soon!!!
This symptom would get worse, but not scarily so, when I first went on abx (when I was herxing) and would slowly subside with each month of treatment.
I never have it anymore - thank God.
Keep the faith - it should go away if you are getting proper treatment! But if it gets worse - make sure to mention it to your doc! It is serious.
Oh, and the things that helped me when it was happening were antihistamines (I used the 4 hour non-drowsy chloreprimine maleate or something like that) and when really bad I used sudafed. Granted I could not handle the wiring that the sudafed did to me but it was better than the head pressure - maybe it is similar to the diet coke that was discussed above - the caffeine might be similar?
Posted by kam (Member # 3410) on :
Not sure if my head stuff is the same as your head stuff.
Just know it is the symptom that scares me the most.
I also know it is becoming less and less with treatment but it has taken awhile.
I can't be sure, but I really try to watch what I eat.
I feel it adds a factor although not the whole picture.
I try to limit or stay away from sugar, white rice, white potatoes, white bread..actually I am learning flour in general is a problem, etc.
I also am taking 2 excedrin daily. Don't think my lyme doc would recommend this but I am not on any type of pain meds.
I had a nurse tell me off the record that she felt that keeping it in the system is the key.
I don't take the excedrin because of the head stuff. I mostly take it to help me lighten that truck ran me over feeling, but it does help with some of the head stuff.
When it is really bad...I haven't found anything that helps. I just have to wait it out. hate it.
Another thing I think that is factoring in with me is learning to not over do it and give myself plenty of down time.
It seems when I try to over ride the system and not listen to my body I pay for it later.
Still learning this one after dealing with this for at least 5 years.
Posted by queenp (Member # 10802) on :
Head aches are a prolem for me as well.
Prior to being diognosed it felt like the top of my head was on fire.
Now that Iv,e been on ABX for three weeks, I know the pressure your talking about.
It,s mild but there everyday all day.
Hope it subsides soon, for you and me.
Posted by Aniek (Member # 5374) on :
Panic,
I didn't mean to scare you. I think the chance that this is a dangerous symptom is pretty small. I just meant if it was new, make sure you mention it to a doctor.
Sometimes people just deal with all the new symptoms, and certain things should get reported to a doctor. Like severe headaches or chest pain.
It may also mean another medication is needed to cross the blood-brain barrier, if you are not on one yet.
Posted by leogrl54 (Member # 10770) on :
panic
know what you are feeling, i think. it actually feels like my brain is swelling(left sided only). not really a headache, just INTENSE pressure. i found this usually happens more so when my herxing is really severe.
if this is new symptom, please tell md. i have an area on my rt side of brain that shows "an inflammation, demyelinazation" of some of the white matter. so now i also have a diagnosis of encephalitis. this was found on 2 different mri's.
i know it feels like we complain a lot but your md needs to be aware
Posted by tdtid (Member # 10276) on :
Panic,
I don't know if mine is the same either, but it's definitely a severe head pain but not what I would classify as a "headache". I remember even before being diagnosed, I would talk of the head pain but trying to tell them it wasn't a headache surely had them thinking I had lost my mind.
I'm starting bart treatment and now starting yesterday, that head pain is back but has added a left throbbing temple to it. Kind of scarey feeling but I'm assuming in my case it's part of these bart treatment symptoms I've been getting, but hey....I surely don't know.
I've had all the CAT scans and MRI's of the brain and they find nothing, so I have to guess this is all par for the course. Good luck!
Cathy
Posted by mag (Member # 8920) on :
hi panic,
i get this still --- but improved
i have heard neurologists call it bi temporal pressure - related to increased pressure from ---- cytes toxins
get well
Posted by minimonkey (Member # 8693) on :
This is one of my worst, most persistent symptoms -- although mine is generally accompanied by a headache of monumental proportions and a stiff neck straight out of hades(death seems a good option at times...yikes!)
My NP confirmed that this is meningoencephalitis -- not super serious unless it gets too severe and/or is accompanied by fever --
In my case, it seems to be related to babesia -- I would SO like this to go away forever!!!!!!!!!!!
Posted by Nebula2005 (Member # 8244) on :
Do your ears ring? Like an electric wire is strung through your head? Do your teeth ache?
Does it feel like something is pushing your nose into your skull?
At the same time my tongue tingles.
I get muscle twitches through my hair and across my face. My ears move.
I think an induced coma would help Posted by Vermont_Lymie (Member # 9780) on :
Dear Panic:
It sounds like you have NOT begun treatment yet for lyme.
If you have lyme disease, (and I guess that is why you are here on lymenet, that you suspect it for good reasons) -- the symptoms that you are describing are NORMAL for acute lyme disease, in my experience. Along with great fatigue and other symptoms.
Do not delay -- get yourself to a llmd (lyme literate doctor) and get treatment RIGHT AWAY.
This is important -- if you cannot get a quick appt with an LLMD, then get yourself to any general practitioner, your family doctor, and let them know all your symptoms, and see if you can possibly start antibiotics before your llmd appointment.
Good luck and be well.
Posted by dguy (Member # 8979) on :
I experience this too. The only "cure" I've found is high dose steroids, but such meds are strongly contraindicated when you have an infection. I think the steroids damp down the immune response, leading to less inflammation, and therefore less pressure in the head.
Posted by gambler (Member # 8441) on :
For me abx made it worse for months, malarone made it as close to unbearable as I could endure, and then it started to improve, and it keeps getting better s-low-ly.
gambler
Posted by Tincup (Member # 5829) on :
I don't think your head will explode. My didn't.
But it sure felt like it could have!
I associate this with babesiosis also. Never got better till I treated for it.. and I've seen many others say the same.
I am NOT a doctor... but what I do.. and MUST do.. is take a 12 hour Sudafed EVERY day. Helps reduce the pressure and swelling. Also take 800 mg of ibprofen for the same reason.. anti-inflammatory. Somedays this still won't touch it.. but without it.. every day would be wicked.
Yes.. it can get worse with babesiosis treatment. But then it should go away.
Posted by panicbegone (Member # 10760) on :
sorry to sound mushy..but i am blessed to have found you all. thanks for taking time to input on this...it is greatly appreciated
Posted by Boomerang (Member # 7979) on :
Panic......i think it's all a normal part of it, if any of this illness is normal.
Like I said, my hubby's has SLOWLY improved, altho' he still complains of pressure on some days.
I know someone said steroids helped them....but when my hubby was on steroids early on (before LLMD diagnosed).......he really crashed on the steroids.
Steroids were the worst thing he could have done, imho.
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