This pressure thing is a new symptom to me that have been going on for few months now, and it's non stop. I can't think. It's hard to have a regular conversation sometimes. It feels like someone is squeezing my brain really hard. Sometimes it comes with eye pain or i feel head pressure in my whole face. I don't know what is causing it, I am not sure if it's lyme or not.
MRI & CT scans are normal.
Today my main doctor said she might send me to a neurologist and see if he wants to do a spinal tap. That sounds painful and risky and I don't know if i'll get any answers out of it.
I can't find any relief from this head pressure. I sometimes feel it getting worse when I lay down. Also when I walk my feet always feel very heavy.
Any experiences or opinions on this?
-------------------- Ema Posts: 394 | From Southern California | Registered: Jun 2010
| IP: Logged |
posted
I am sorry you are experiencing this. It is the worst. Co-infections could also be the culprit. Do you have bartonella or babesia. Hope you have some relief soon.
Posts: 238 | From new england | Registered: Feb 2013
| IP: Logged |
posted
I have the same type of symptom and at times it's so bad I can barely stand it. Really wish it would go away..also wish I could figure out exactly which infection or issue is causing it.
-------------------- "The simple things can get you through the hardest times." Posts: 628 | From Connecticut | Registered: Sep 2010
| IP: Logged |
posted
This is my main symptom. The pressure is the worst. I don't usually have it in my face, just my frontal sinuses. It is a global headache and sometimes it feels so inflamed I feel blood pulsing through my head. I have burning sensations sometimes and also I feel the need to hold my nose and blow to pop my ears to give me some relief of the pressure. I had it before treatment but not this bad. I've been treating since Oct. All I know is that I tested positive for Babesia Duncani and have recently started developing car scratch lines, indicating Bartonella.
People tell me it can be Babesia, Bartonella, Lyme, or metal toxicity or even mold toxicity. As I speak right now the pressure is horrible, I have pain in the bridge of my nose, and my neck feels stiff. 20 minutes ago before taking my herbals and tinctures I felt pretty good. It just comes and goes. Sometimes horrible intensity, sometimes light intensity. Very rarely is my pain/annoyance level a 1. The pressure sensation never fully goes away... It never reaches a 0....
You just have to keep holding on and explore new stuff to take. I believe that it is the Babesia Duncani causing the head pressure in my case. I also suspect the new fry bacteria Fl193 or whatever it is caused because I have sores on top of my head as well.
Posts: 251 | From Baltimore | Registered: Oct 2012
| IP: Logged |
posted
Also, I had the spinal tap done when I was going from doctor to doctor before I ever suspected or started researching Lyme. They found morning wrong with my spinal fluid (as they rarely do) and I had the worst headache (post-lumbar puncture headache) for 14 days and could not sit up without having a horrible horrible headache because my brain was sagging because the fluid took awhile to build back up. It was awful. My CT and MRI scans were all perfectly crystal clear as well.
Posts: 251 | From Baltimore | Registered: Oct 2012
| IP: Logged |
posted
You aren't alone. This has been one of my worst symptoms over the past several years. It feels like someone is blowing a balloon up inside my sinuses and brain. Such terrible pressure, can't think, can't do anything. It comes out of nowhere! That's the strangest part for me. I don't know what causes it. We just need to keep treating and believe it will subside in time. IT WILL!
Posts: 463 | From Sandusky, Ohio | Registered: Jan 2012
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I have this exact issue. Normal CT/MRI..terrible head squeezing. It's destroyed me for years. Same was you describe it.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
I have this too. It's mainly pressure and pain behind my eyes that never goes away. But sometimes severe sinus pain/pressure too and just general headache/pressure.
No one can tell me what it is. And so far no one has been able to help. I am very frustrated to say the least.
LT, I'll check out that link.
Posts: 1885 | From here | Registered: Jul 2012
| IP: Logged |
posted
My llmd prescribed diamox for this...havent tried it though. My worst symptom too.
Posts: 66 | From Memphis | Registered: Feb 2013
| IP: Logged |
Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
I've also had this for years and still do despite tons of treatment for lyme soup.
Sinuses feel so blocked, head pressure, some pain and burning at times.
I've been taking the allergy path for a few months now with some relief at times finally.
Not to a 0 though. My allergist said following testing, "You're allergic to the world". My IgE also was nearly 2,000. Now 1,736.
I was never affected by allergies prior to all of this.
It is taking multiple meds to get a little relief. Singulair, nasonex, astepro, sublingual immunotherapy, sudafed as needed. The sudafed helps the most but one must be careful with blood pressure issues.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
| IP: Logged |
posted
Has anyone ever looked in MRSA or fungal colonies within their sinuses? My LLMD is investigating this when she goes to the Lyme convention with Dr. K and her colleagues. She said the sinuses can be the main problem. And when my symptoms did first start, my CT scan at the Er showed my sinuses were very swollen and diagnosed me with chronic sinusitis. I was working in an environment with black mold on the walls.
But then I tested positive IgM for babesia duncani. So I just dont know. She said I can have a sinus spray bottle made up for me and give that a shot, so I am excited about that.
Posts: 251 | From Baltimore | Registered: Oct 2012
| IP: Logged |
Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
I've been scoped multiple times, sinus surgery, CTs.
I was told fungal balls would be very visible. I did have an antifungal nasal spray compounded for me through infuserve. I don't remember what the antifungal was.
I also remember trying Gentamycin sinus irrigation. I hope the sinus spray works for you xrunnerx.
It is definitely a debilitating condition. Much more than I thought sinusitis was/is.
My scans etc always show inflammation. I had also worked in a building with black mold. I did however test negative for stachybotrys.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
| IP: Logged |
posted
I was actually tested for Marcons.. Came back positive. Doc ordered a special nasal spray to use for 2 weeks; it contained things like gentamicin, diflucan, bactriban, EDTA, and maybe something else I'm forgetting.
Unfortunately I only used it for maybe 1.5 weeks bc I started to get a bit of a bloody nose from it.
I also briefly tried an herbal nasal spray called Super Good Stuff Nasal Wash... I used it twice a day for about as long as the prescribed spray, but I'm wondering if I need to use it for much longer to see results. It's rather unpleasant bc it burns like heck!!!
Not sure if Marcons creates the head pressure or not... It seems to flare randomly, so I'm still unsure of exact cause.
-------------------- "The simple things can get you through the hardest times." Posts: 628 | From Connecticut | Registered: Sep 2010
| IP: Logged |
posted
Ema-I lose sleep due to this too-I am sorry you are experiencing this. Have you tried ice packs? Sometimes, they help just take the edge off for me.
I know, I wish there were a pill to take to make them go away.
Posts: 238 | From new england | Registered: Feb 2013
| IP: Logged |
-------------------- Ema Posts: 394 | From Southern California | Registered: Jun 2010
| IP: Logged |
Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
Ema,
It IS miserable. I also have the heavy leg feeling. That initially got better when I started hydrocortisone for adrenal fatigue but has since come back.
I also went through a lot of testing also for the head pressure stuff. I wouldn't have known about the sinus inflammation if I hadn't requested a copy of the report and read it myself.
I was told negative over the phone.
My head used to feel like it weighed 100 pounds and always had to rest it on something if I had to go to an appt..
The only relief I get is from treating with allergy meds.. I never had allergy problems previous to lyme.
If you don't have uncontrolled high blood pressure, I would take a 12 hour Sudafed.
Use it in the morning as it will keep you awake. You can also take some ibuprofen. That's what gives me the most relief. All over the counter.
Benadryl at night may help. Side effect is drowsiness. That is what is in any over the counter sleep meds.. i.e. tylenol pm
Some do OK with benadryl but for me I feel too groggy in the morning after using it.
Just some thoughts that may help.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
| IP: Logged |
posted
I have no idea whether this might help, but what about the idea of trying anti-inflammatory juices?
Like mangosteen juice and noni juice, also grapeseed extract capsules. All of that might be able to reduce inflammation. It has for me. My brain inflammation has gone down, as per a hormone marker!
Btw. when I started drinking mangosteen juice, my sinuses ran for two days.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
I have a huge bottle of untouched noni juice in the fridge, I should try that.
Mangosteen Juice... never really heard of it.
I still don't know what to do about this pressure. I am not feeling any better with the candida treatment...
I tried over the counter pain killers and allergy meds... nothing is helping.
-------------------- Ema Posts: 394 | From Southern California | Registered: Jun 2010
| IP: Logged |
dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
I get head pressure and odd sensations as though there is seltzer poured into my brain. Yesterday was a very bad day for me and I had a killer head ache with head pressure.
Last night, I decided to up my dose of fish oil and I think it helped within an hour or so. Instead of 4 grams, I had 5 yesterday.
So if there is anything you can do to increase your anti-inflammatories, as Robin posted, that may make a difference. Turmeric and astaxanthin also help in this area. Good luck to you. This is a horrible lyme symptom.
I would also suggest acupuncture. It can help with sleep and just coping with this awful illness.
Posts: 2386 | From New England | Registered: Aug 2011
| IP: Logged |
posted
I get the same head pressure, swelling feeling each time I have a major herx.
Sometimes aspirin will thin the blood and help, sometimes, a water retention pill will help.
Sometimes, nothing helps.
The last one I had, I ended up in the ER. They finally did a spinal tap and I was positive for viral mennigitis.
I'm sorry to say that time will finally get rid of this feeling. I did not read all the posts, but if you are taking any abx, or anything, then back off right now. Let your body deal with the herx.. don't keep placing yourself IN the herx with more meds. You can always ease back into taking them after you get over this herx.
Water, aspirin, water retention pills... and off drugs until you get over the hump of the herx... that's what I do. Prayers!
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
| IP: Logged |
posted
There used to be in here, years ago, people saying that Alka Seltzer Gold, which is harder to find, but that this "Gold" one would help with this.
Maybe try a Benedryl... it will put you to sleep. My llmd did say sometimes an allergy drug might help with the pressure.
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Here is Dr. H's recipe for treating a herxheimer reaction. It includes the Alka Seltzer Gold mentioned by hadlyme above:
Herxheimer reaction (from 2010 Lyme Conference, Dr. H):
Take-home message: DETOXIFY YOUR LYME PATIENTS!
It does NOT matter what antibiotic you give people, they will NOT get better without detoxification
For Herxheimer reactions: 2 Alka-Selzer Gold (no aluminum) in 8 ounces of water with lemon or lime followed by 6-8 capsules of glutathione or 1500 mg of oral liposomal glutathione.
70% will feel better in hours
On the topic of water: Dilution is the solution to pollution. This suggests that in order to help our bodies detoxify, we must drink more water
I recall someone updating this recipe about a year ago, but I can't find that post. Perhaps they will repost it for us.
If you suspect a fungal infection in your sinuses, use a sinus rinse bottle and add a drop of Grapefruit Seed Extract to the saline solution packet. A naturopath recommended by my lyme doctor told me to do this. Hope you find relief.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
posted
Luvema...i just read your original post...and you describe my symptoms to a tee. The pressure is unrelenting that will weight my whole body down. It is the very top of my head. And will get heavy legs..which makes walking hard.
The ONLY thing i have found that has helped is Bactrim. If i dont take it...it is back the next day. I will feel pressure pulling above my eyes too.
Are you taking abx and are you lyme positive? Im curious because i am new to all this...and trying to sort out what is causing what...and you describe exactly what happens to me. I was completely debilitated with head pain until is started bactrim..doxy doesnt touch it. Dr. C told me me it is unusual to go that downhill with lyme in one day of missed abx...so im really trying to figure out what i am dealing with. Another infection or a co infection...he said it is something that is faster growing. Like strep..or perhaps bartonella.
Maybe see a doctor about trying bactrim if you havent. I am totally the opposite...the bactrim although i did herx in the beginning...when i leveled out...it got me much more functional. However it just keeps it at bay..never goes away.
Posts: 66 | From Memphis | Registered: Feb 2013
| IP: Logged |
posted
Before all the lyme were you considered a "flexible" person? You don't have to be a contortionist...maybe ballet? Anyway it is being found out that Ehlers Danlos...more prevalent that ever thought is part of having a tough go with lyme. Diamox may REALLY help your headache. Also taking anithistamines. An H1 and H2 blocker then adding claritin and Chromalin, ketotifen, and singulair. Read all this on LymeMd blog. He does not know about the flexibility issue and the Diamox, which has been huge for me. He does work with the antihistamines.
Posts: 7 | From Middleburg, VA | Registered: Apr 2015
| IP: Logged |
posted
OOPS...also POTS...Postural orthostatic tachycardia syndrome. When you stand up your blood pressure drops and you can become dizzy.
Posts: 7 | From Middleburg, VA | Registered: Apr 2015
| IP: Logged |
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
cottonbrain
Frequent Contributor (1K+ posts)
Member # 13769
posted
Histamine Intolerance? From what I have been reading, this is not that uncommon and can cause sinus and headache issue.
See Silverwolf's thread on page one of this forum.
I have not tried the remedies yet, but the idea is that foods, meds and PROBIOTICS contain or release histamines in your gut. Symptoms can include headache / migraine / stuffy nose / sinus congestion and a myriad of more typical allergy symptoms.
This is not a food allergy. You control it with diet, DAO enzymes, and appropriate strain probiotics.
Do not miss Silverwolf's thread for very informative need-to-know info.
Posts: 1173 | From USA | Registered: Nov 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Frown]](frown.gif)
![[Smile]](smile.gif)
Printer-friendly view of this topic