I am still dealing with multiple neuro symptoms, along with some heart symptoms.
I have such a hard time trying to describe my neuro/brain symptoms to anyone, including doctors.
At times I feel very strange sensations almost like a vibration or spasm in my brain along with eye symptoms, dizziness, off balance feeling, trouble thinking etc.
Even these descriptions don't really convey what it really feels like.
I'm just curious if anyone has odd brain or head symptoms and how they would describe them.
It seems like I am having a flare lately and it is scary. My heart rate was down to 42 last night and every time I have mentioned low HR to cardiologists they say it's no big deal and I don't have heart block. I think it is part of the neuro stuff.
Thank you for reading
Posted by purplehaze (Member # 40385) on :
improver,
yes I can very much relate to that description of the neuro symptoms thankfully for me no dizziness but all the rest same as you, plus a crawling, sensation of my hair actually moving
you are correct, so so hard to even describe them to anyone
strange and unusual doesn't even come close to describing this illness, freakin bizzare and totally scary...
Posted by randibear (Member # 11290) on :
lately mine has been all in my head. jaw and ear pain, severe head pressure, and dizziness.
Posted by TF (Member # 14183) on :
"Many use the phrase "a vibration in my head". "
This is a quote from a very old article, written in 1994, that has one of the best descriptions of lyme disease symptoms. "When to Suspect Lyme Disease"
It even mentions that lyme can be spread by fleas and biting flies and also states that lyme was found in the brains of Alzheimer's patients.
Published over 20 years ago.
Posted by improver (Member # 8380) on :
Wow! I just read that article. It really sounds like even back then there were people who really knew a lot about this illness and were not listened to.
It makes me so sad and feel so helpless. I cannot handle abx anymore and feel as though I am deteriorating.
My brain is exhausted.
Posted by foxy loxy (Member # 47053) on :
Sorry, to hear that improver. You certainly are not alone. I too have BIZARRE head symptoms that are largely indescribable and I pathetically describe them as pressure, and gnawing nerve sensations etc. It has been so bad I laid in bed crying...
I have been through tons of antibiotics for five years now and still have issues too.
I recently have added in mild hyperbaric. My dr. said mild hbot is an excellent adjunctive treatment particularly with symptoms as you describe. He said he has never seen it NOT help.
I just started so I can't say it helped yet, but some on this forum say it really helps long term. Check out the mild hyperbaric conversation.
Posted by nyclymedout (Member # 45977) on :
The saddest part is this doctor committed suicide years ago. Google his name and you will see.
Posted by purplehaze (Member # 40385) on :
foxy loxy,
Im in the exact same situation as you, just started hbot [had to stop due to ear discomfort/infection or pressurised too high]
the head stuff is the most distressing/soul destroying ever, itching,tingling, vibrational, crawling, dull ache, pressure, mild numbness, warm feeling, cold feeling and more...
not too mention the cognitive side of it which are sometimes off the charts...
Posted by dbpei (Member # 33574) on :
My head symptoms are so hard to describe too. They involve my ears, jaw bone and sinuses as well. The worst for me are these sizzling sensations that I can feel and hear between my sinus and left ear. Sometimes it feels like there might be a small mass or biofilm in this area that is blocking circulation. (I know this sounds so nuts!)
I have lost most of my hearing in one ear and I have nerve damage to my vestibular system on both sides. I live with a constant internal vibrating sensation in my head and sometimes in my extremities. My ears often feel blocked or full of liquid. With that I have constant tinnitus, head pressure, burning, squeezing, and pinching sensations. It feels like there is a fizzy liquid (like a thick ginger ale) outside my brain that is moving around slowly.
Doctors look at me like I am nuts when I try to describe this - unless they are Lyme literate. It is awful to have neuro lyme. That is very sad about that doctor having committed suicide.
I hope some others will chime in here as to how they would describe their symptoms and what has helped. I have never tried HBO, but would like to try in the future. Right now, I am on IV ABX for the first time. It seems to be making many of these symptoms more pronounced, so I hope that it is working!
Posted by purplehaze (Member # 40385) on :
dbpei,
I've had that liquidy flowing around the head sensation too
I wouldn't even consider mentioning any of the above symptoms to my doc as I know he would be instantly tempted to make an emergency call to the men in white coats he has passively insinuated "this man is nuts" for a lot more mundane stuff than this
Posted by dbpei (Member # 33574) on :
I have been to multiple ENT's and oral surgeons due to continued hearing loss and vestibular damage. I had an intact dental implant removed because I was convinced that the implant had to be the source of these symptoms. I was wrong.
Because of the hearing loss, I have felt it necessary to describe some of these sensations, hoping it would give the doctors a clue as to what was going on. The doctors label some of these sensations as cranial neuropathy or parasthesias.
But nobody has been able to find anything visible in an MRI or cat scan so far to determine the cause. MRI shows a lesion that they think is a venous malformation. Cat scan shows inflammation of sinuses and a small cyst that the docs think is benign.
Neuro-psych testing does indicate some deficits. I recently had a pet scan done of my brain. It will be interesting to get the results.
Posted by foxy loxy (Member # 47053) on :
dbpei, have you ever considered mold involvement with all your sinus issues?
I lived in a moldy environment for a year, that is when all my lyme trouble really started. I tried the brewer protocol for nearly a year. Didn't do tons for me but some people say it really helped them sloooowly...
Purplehaze, you sound miserable. I think you are probably worse than me. I hope you can continue the hbot.
dbpei, I am not saying you iv isn't helping. I hope it does for you. some people are really helped by IV. I will just say that I did IV for a year and it didn't help much at all. I did only IV rocephin though. Combo drugs are better.
Posted by dbpei (Member # 33574) on :
Foxy loxy, I did the Brewer protocol for close to a year too. Recently I did BEG spray for another few months. My symptoms didn't change.
I also moved to a brand new condo on a slab almost 2 years ago. But my previous home of 20 years tested well on ERMI, despite a few leaks over the years that were repaired. I took cholestyramine for about a year. It didn't cause my symptoms to change in any way.
I don't have chemical sensitivity (very lucky!) and don't really have rhinitis or breathing problems. But I sure do have strange sensations in my trigeminal and cranial nerves!
Some of the Shoemaker inflammation markers are high or abnormal, but only about half. So my gut is telling me that mold is probably not the issue for me.
I have been chelating heavy metals over the last year and had all of my mercury fillings safely removed before that. So I don't think heavy metals are a problem any longer either.
I have done ozone treatment and have tried many things to get well, including RIFE and Ondamed, Asyra.... IV ABX are my last resort. I sure do hope this makes the difference I have been looking for like so many here.
I am only on IV rocephin, but am also taking doxy orally as well as some Byron White herbs. Keeping my fingers crossed in a big way.
Posted by Jessig627 (Member # 36240) on :
I too understand this all too well.
My head feels like it's going to explode and I feel like I'm fighting off vertigo. I feel dizzy like and almost like I have to mentally fight it off or the spinning will start.
My prayers for all of us is that we will no longer need to discuss and rely on each other in the coming years because they'll finally find a cure to this god awful disease!
Posted by foxy loxy (Member # 47053) on :
dbpei, that is interesting that you did the brewer protocol. Did you ever test positive for mycotoxins? I did, and that still bugs me even though the protocol, doesn't appear to be doing much.
I don't know where you trigeminal nerves are but I too experience a terrible "gnawing" sensation in my nose/sinuses into head.. This has also made me go down the mold route. Now I am not sure.
Right now, I am trying mild hbot. I have a home unit and plan to give it a long try. Man, I sure hope your IV Rocephin helps! I shudder when I think of that stuff! Made me feel terrible, but I definitely think it is worth a try... anything is when you are desperate!
Jessig, I know how that spinning feeling feels like and I too can almost "think" it away. Weird stuff!! I too, am praying somebody smart will get on this.
Posted by Phoiph (Member # 41238) on :
I had a European neurological strain of Lyme (Garinii), and had everything all of you are describing and more (as I'm sure you do as well).
Crawling, gnawing, constant internal vibrating, feeling my face being pulled like taffy, cigarettes being extinguished in ears, whole body burning, stinging, random deafening noises and auditory hallucinations (featuring music I detested), twitching, etc., etc., etc...and this doesn't even cover the mental anguish.
The sensations are called "parasthesias"...and I believe stem from inflammation of the nerve roots.
It was agony to hang on for 8 years like this...but the good news is: "all gone"...
Posted by foxy loxy (Member # 47053) on :
Phoiph, thanks for the encouragement! Hope is the sweetest when you are in a such a dark tunnel. Did you ever get periods of relief from your symptoms or were they constant? Mine comes and goes just enough to keep me hoping there isn't permanent nerve damage.
Posted by Phoiph (Member # 41238) on :
foxy loxy...
Actually, no...I had no reprieve at all during those years...not one day of relief...and I kept a log.
I was positive I had permanent brain and nerve damage...as there was no window showing that I was "still here" for so long.
This is why I hold so much hope for people...as I was "worst case scenario", and still recovered...
Posted by dbpei (Member # 33574) on :
Phoiph, your symptoms sounded horrific. Your description of the gnawing, crawling, internal vibrating and feeling like your face was being pulled like taffy is very much my experience. It is incredible that you suffered like this for 8 years and are now free of them!
HBOT has been your miracle! Thank you for trying to help so many here. It must feel so miraculous to have your old body back. God bless.
I test positive for borellia miyamotoi and wonder if different strains cause these unique symptoms. I have also been testing positive for brucellosis off and on while treating for it.
Praying for my miracle too. It is comforting to know that if these IV ABX do not work for me, there is a possibility that HBOT may help.
Posted by Phoiph (Member # 41238) on :
dbpei...
Thank you very much!...
Yes, I have read that different strains present different symptom profiles...and we vary in our susceptibilities.
Try to remember that this disease seeks to destroy your will (as if it "knows" what will personally drive you to the brink)...and you must not let it win...
Even if you can't sustain hope of becoming well (I couldn't), doggedly pick yourself up again and again and remain open to possibilities (as you are)...no matter how and long it takes for things to shift and your path to open up...
Posted by dbpei (Member # 33574) on :
![[Frown]](frown.gif)
I hope you can continue the hbot. ![[Smile]](smile.gif)