For the past 3 months after two years of being sick and 1 year of treatment I was finally doing better. My debilitating symptoms have been constant head pressure (feeling like I am under 8 ft. of water, inflamed sinuses, ears popping, pressure in back of neck), fatigue and heart pain. Many other ones as well. Around October they started to lessen. My head pressure was always either a 2-10, but never reached a zero. Finally, I had started to reach a 0. Heart symptoms started to go away. I thought I was finally on the road to remission.
The past two weeks have been extremely awful. The pressure has been awful. As to where before I would still get it but it would go away, this time it is not going away and is staying for longer periods. The burning sensation that I get along with my headaches is also awful. I feel inflammation around my heart again as well. Fatigue has been awful, especially during the afternoon.
I am not sure what changes are happening. On January first my Rifampin dosage was increased. Beginning of January I started hitting the gym hard and felt amazing. I was up to running 6 miles and the pace I would run before getting sick, started lifting weights (which did make me feel nauseated, but I pushed through). Would it take almost 4 weeks for that Rifampin increase to kick in? Is this a major herx? Is me burning fat from exercising allowing stuff to finally be hit with antibiotics? I am really worried about what is going on in my head, especially after feeling so good. I would still get symptoms, but not like this. I am also having stabbing pain in my head.
When I Google chronic head pressure, I am baffled. The thousands and thousands of posts across different message boards, different sites, etc. All the same symptoms as me. None have a clue as to what is causing it. People want to end their lives from this constant head pressure. I wish I could tell them my entire story. Some posts are from the 2000’s…. none posted after that. I wonder if they are alive or if they found a cure. Postings from all over the world. One day just waking up and experiencing this horrible head pressure.
I wonder if I will ever be headache free. I wonder many things… and I think I am crazy for thinking them. Are these chemtrails causing me and these thousands of other people to experience this head pressure? Did the Gardasil vaccine do this to me? Is this Bartonella doing this to me? Is it still the Babesia? Is it Lyme? Is it cell phone radiation? Is it some sort of virus? Was it the mold I was exposed to a few years ago?
I have cut out ALL chemicals in food and read labels very closely. I only drink water and tart cherry juice. Lemon water helps me so much. I really don’t know what to do anymore. Today is much better than the past three days. The only hope I have is still going after Bart since I had improvement. But now I wonder. Sigh.
Posted by GretaM (Member # 40917) on :
Doesn't the increased heart rate make the head pressure worse?
Do you have ketones in your urine? That too will make head pressure worse.
Do you still have an LL? Can you inquire about acetazolamide? Works for me.
Posted by Lymetoo (Member # 743) on :
Rifampin caused horrible headaches and head pressure for me. I had to stop taking it on Day 5 and my headache continued for 3 LONG weeks.
Have you also considered CANDIDA/yeast as the cause of your head pressure?
Posted by desertwind (Member # 25256) on :
For me it was/is; yeast, parasites and bab.'s.
Posted by xrunnerx2012 (Member # 39306) on :
Working out always makes me feel better. I've had the head pressure before starting Rifampin. I started Rifampin and Minocycline in July and I have been on it since. The rifampin was doubled in January. Before July I was treating Babesia Duncani for a year. No change in symptoms. I'm sure I have yeast but I don't think thats the cause of my head pressure since I have had it since getting sick two years ago. I still have my LLMD.... she thinks it is the Bartonella.
Full list of my symptoms:
*symptoms almost all the time*
Chronic Head Pressure Ear pressure/popping fatigue morning head headache using wrong words in sentences/trouble formulating thoughts eye floaters
*symptoms every now and then* Stabbing head pains that only last seconds moving sensations in head heart pain/inflamed feeling neck stiffness random stabbing pains in parts of my body that only lasts a few seconds body jerking eye twitching seeing halos after looking at a tv screen then looking away and seeing an after image a few others I can't think of at the moment.....
Posted by surprise (Member # 34987) on :
It does sound like Bart to me. You increased your dose of rifampin in January...
After your hard workouts, running 6 miles and weight lifting, do you take the next day off to recover? (Suggested in Dr. B's guidelines, to allow immune system to regenerate, so to speak. Take a look, he's pretty emphatic about it.)
I work- out, but in no way high cardio like that, in fact, it's walking hills for some miles and/ or weight lifting to DVD's.
So I don't take a day off in- between, because I feel like I've built up/ doing a long time, but more importantly, I am not taxing myself physically to the max.
Posted by Catgirl (Member # 31149) on :
Head pressure, headaches and pain behind eyes, sinus congestion, post nasal drip, heart palpitations, abdominal pain and nausea, twitches, fatigue and pressure in the back of the neck/head are some symptoms of proto (FL1953).
Posted by GretaM (Member # 40917) on :
Yes, surprise and catgirl make good points there.
This may be a silly question but when was the last time you had your eyes checked?
Lyme and bart had changed my eyes so much...my eye doc said my eyesight was terrible without or WITH my old glasses! It had only been two years and I have lost the ability for 20 out of one eye now completely.
When I got my new glasses I swear I could hear a choir or angels singing. It helped the head pain quite a bit.
Posted by dbpei (Member # 33574) on :
xrunner, this must be so discouraging. A couple of things I could suggest are taking astaxanthin (this is anti-inflammatory and helps with all kinds of vision issues) as well as lithium orotate (neuro-protective and helps with brain inflammation).
I know they are both treating the symptoms, and not the cause... but they may help to get you through a difficult period. I hope you get some relief soon.
Posted by xrunnerx2012 (Member # 39306) on :
Thanks for the replies. I have always wondered about FL1953... but the testing is expensive and from what I have read it is hard to treat. One of my other weird symptoms I forgot to mention is that I have sores/scabs on the top of my head, which seem to come and go in cycles correlating to when I get really bad headaches. However, I haven't had them lately. Also, yes, I had my eyes checked this summer and my vision hadn't changed. I told him what I saw and he looked at me like I had 10 heads and said my eyes are 100% healthy and that the floaters are "normal".
I will look into the astaxanthin. Thakfully I have found organic tart cherry juice and lemons water to help with the head pressure when I have a bad episode.
Posted by joahsark (Member # 20598) on :
xrunnerx2012,
Your symptoms are exactly mine, woke up one day in 1994 with the head pressure and it's never left. I follow your posts and was so encouraged that you were recently able to get it down to a zero. I can't even imagine. I'm currently on Iv Ceftriaxone, oral zith and about to add oral Rifampin, which I tried before and felt like I got run over by a truck, but giving it a go again. This head and neck pressure is a living hell, I always tell the doc I'd keep everything else in xchange for just getting rid of this one thing. Hoping you continue to improve, thank you for sharing your journey, I'm going to keep watching your posts for hope!
Posted by Catgirl (Member # 31149) on :
Xrunner (and joahsark), look at the symptoms in the link below. Many of your symptoms fall into this category. You can always cut the fat/arginine and see how you feel. If you feel better, you'll have your answer without having to pay $$ for the blood test.
Those slides are very interesting. I am going to show them to my LLMD. I may even fax them over to her. I had mentioned FL1953 to her a few months ago but she didn't think much of it. I am going to cut out a lot of fat and see if I have improvement.
One thing I always notice is that after I eat, I get the head pressure. Hmm.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by xrunnerx2012:
One thing I always notice is that after I eat, I get the head pressure. Hmm.
- Sounds like yeast is at least part of the equation.
Posted by joahsark (Member # 20598) on :
I've been on the strictest diet ever for just about 2 years now. No sugar of any kind, not even fruit, no fat (only what is in white meat chicken, eggs, or deep, cold water wild fish), no gluten, no dairy,no red meat, no processed foods and extremely low carb. No change. Yeast completely under control also. Ugh.
Posted by Marnie (Member # 773) on :
Believe it or not...it is tied to liver functioning. Bb accompanied by toxins looks to do "a number on" the liver from the get-go.
A "basic" CT brain scan MIGHT show show "idiopathic intracranial ***hypertension"***.
More common in women...
Just exercise to correct?...NOT if you have a B6 deficiency!!! - PLP is the active form of B6 and ROS (free radicals) are thru the roof if B6 deficient -> inflammation.
FIRST comes excessive free radicals (beneficial AND harmful) THEN comes inflammation.
Let me make this clear...of all the B vitamins (and ALL are important), B6/PLP is involved in over 140 enzyme reactions...get the picture? It works in conjunction with Mg...which takes a "hike" at the outset of lyme...documented. It plummets.
Help out your liver...first...
Body-mind connection.
Get an CT scan of your LIVER. An ultrasound does not ALWAYS pick up a "fatty liver" = (NAFLD) which in time -> diabetes and worse.
Do you think a fatty liver can process all the drugs you are taking?
Liver steatosis (commonly called "fatty liver") - very common in the U.S i.e. "metabolic syndrome" is
caused by a methionine AND choline deficiency.
Bb needs choline and tryptophan. et al. Bb cannot grow in a medium that is tryptophan depleted.
WE need tryptophan too. Tryptophan + B6 -> serotonin and eventually melatonin et al!
Serotonin is ANTI-INFLAMMATORY. Melatonin is an anti-oxidant.
But...if B6/PLP is deficient...the body will CHOOSE to use any available B6/PLP to make (longevity) niacin -> NAD...cutting edge research re: niacin prolonging life.
To protect your brain from "neuro lyme" get on the highest doses of Prozac allowed to keep serotonin higher, longer...prevent the breakdown of serotonin.
This will ONLY protect your from "neuro" LYME.
My opinion.
Chinese researchers...aldehyde = headache after a "night on the town" to compensate...get this...drink SPRITE which increases ALDH.
Doubt? Google: Chinese ALDH Sprite.
Posted by xrunnerx2012 (Member # 39306) on :
I wish it was yeast causing this...
Head pressure, stabbing head pains, burning sensation in heads, head sores, sinus pressure, fatigue, heart pain. My worst symptoms. It has to be all connected to something. I wish I could just pin point it.
Posted by Catgirl (Member # 31149) on :
It screams of proto to me (FL1953).
Posted by Catgirl (Member # 31149) on :
quote:Originally posted by joahsark: I've been on the strictest diet ever for just about 2 years now. No sugar of any kind, not even fruit, no fat (only what is in white meat chicken, eggs, or deep, cold water wild fish), no gluten, no dairy, no red meat, no processed foods and extremely low carb. No change. Yeast completely under control also. Ugh.
Joahsark, we eat similarly, but I don't eat eggs. Chicken, eggs and fish all have arginine, which protomyxzoa loves. The eggs also have fat in them which, in addition to arginine, makes proto grow 100x more biofilm. The biofilm makes everything worse (all your co infections flourish). Any fats/oils and anything that comes from something that had eyes feeds this bug (animal products, fish, dairy, you name it). My diet is primarily from The McDougall Plan:
The primary way I feel better is to cut the fat and meat, and absolutely no oils whatsoever. No nuts either (or almond milk). I eat mostly a vegan diet. Occasionally I have some chicken, a tiny bit of fish, or GF pizza, but that's it. I feel better when I eat this way (low fat/low arginine). When I cheat, I feel worse. The more I cheat, the worse I feel, and have to get back on track.
You can test yourself just by changing your diet. I felt better in 3 days. Some people take longer though (months). No fats/oils/animal products. It's worth a shot. Also, I eat carbs or I'd starve, but I eat the ones that give me the least amount of yeast. Also, parasite meds, malarone and diflucan help me with this bug.