I have had peripheral neuropathy for 2 years, nothing helps it.
Now in recent months I am experiencing balance issues (it started after I stopped Bicillin) and I get this severe all over head pain.
Also pain in the back of my head rarely subsides.
Being that I started off with all over nerve pain and now dizziness (this is brain related dizziness - not vestibular inner ear) and these head pains, I am really wondering if some kind of tumor or lesion could be the cause.
I am having an impossible time with medications, most anything now makes me non functional as it increases the dizziness. I am literally petrified to put any pill in my mouth knowing the room is going to start spinning and the nerve pain will be wicked-bad.
I am just scared I guess and wonder what you all might think about nerve pain, balance/dizzy spells and head pain (not headaches).
Thanks.
Posted by feelfit (Member # 12770) on :
Dana,
I can only sympathize with you. These are my symptoms as well. Not headaches, but head pain....totally different.
Also the dizziness, I often feel like I am going to pass out. MOstly, I describe my symptoms as scary head sensations....add to that the inability to sleep and life is not so pleasant.
I feel your fear and frustration....unfortunately, I do not have any answers as far as relief goes. hang in there.
Rhonda
Posted by feelfit (Member # 12770) on :
One little thing that helps somewhat is filling a tube sock with rice and heating it in the microwave. I then drape it across my head.
Rhonda
Posted by lymebytes (Member # 11830) on :
Hi Rhonda, I am sorry you are experiencing this too, it is scary.
The pain was bad enough, throw in the dizziness and head pain (you are right totally different from headache) and it makes you wonder what is going on now?
Thanks for the tip...I have found heat helps, even if I stick on a thermacare on my neck, it seems to help the head pain.
Wears one out, doesn't it?
Thank again, Dana
Posted by madge (Member # 13704) on :
my hubby has had inner head pain for 6 yrs...but no dizzyness until after i yr on meds dr put him on Levaquin then the pain is moving and eye pain is now a stabbing pain with dizzyness..sick to his stomach out of nowhere and gone...never had bone pain or the like has always been in his head..I get worried but he is so good and is hoping to get even a little less pain in the future..take care i think the meds do alot to ones body Posted by Geneal (Member # 10375) on :
Have you treated for babesia?
Just a thought. I have balance issues and terrible headaches
As well as stabbing ice-pick head pains from that.
Hope you feel better soon.
Hugs,
Geneal
Posted by tailz (Member # 10014) on :
I worry about tumors, too. But mostly because of this:
My sympathies. Balance dizziness is the worst. Add head pain and you think about aneurysms. Have you had an MRI?
Artemisinin was the one thing that threw balance issues and dizziness into the stratosphere. I'd feel like I was going to pass out, like I was just a heartbeat away from the black creeping in at the edges of my vision.
Sending powerful healing vibes your way, all of you.
Posted by wiserforit (Member # 9732) on :
Wow, you guys,
I finally have found a club to whom I belong! I have been having headaches and dizziness for years.
My headaches range from dull aches along the back of my head, down my neck and middle back -- to monthly migraines behind the right eye and ear along with ice pick stabs through the top of my head into its very center.
Since I've increased my Malarone and Amox for Babs two weeks ago, the accompanying nausea with dizziness makes me irritable and, basically, one unhappy camper. Lately, sound and light sensitivity have been thrown into the mix.
The dizziness and nausea went away with IV Rocephin, but came back with oral abx -- as did high eye pressure. I'm taking eye drops for the pressure now.
So sorry you all have these symptoms too -- but it doesn't feel so arbitrary and lonely knowing that there is a wide snap-shot of these symptom constellations!
Sometimes Benedryl helps lower the pressure in my head a tiny bit; sometimes Advil helps with my neck a tiny bit.
Overall, I have to put up with the darn headaches and balance issues in their various unknown phases. Always worst with sudden barometric changes in weather.
Best to all with wishes for relief anyway you spell it,
wiserforit
Posted by hostbody (Member # 12695) on :
I too suffer from head pain - not head aches.
Also I've have the dizzy spells. It doesn't hurt
to get things checked out. But just so you know
I did have a MRI of my brain (for other reasons)
and I did not have a brain tumor. It's just the
Lyme.
Posted by lymebytes (Member # 11830) on :
It has been 10 years since I had a brain MRI - everything was ok, but I probably should consider doing one again.
Babesia is a concern of mine, but I have seen 2 LLMD's that don't seem to think I have it, but I wonder.
Well I am glad I am not alone - I can handle the excruciating pain, but the weird head pain and dizziness, is just too scary.
Thanks everyone.
Posted by ericaf (Member # 10929) on :
Headaches and headpains have been my biggest problem and made my life misery for a long time.
Babesia treatment with mepron and Biaxin help but then I saw the greatest improvement when i after 3 weeks of Bactrim.I never felt so good since becoming ill with Lyme.
Unfortunately I had to get off this drug because i became sensitive and my white blood count dropped real low. The headaches got very severe again but now seem to have improved after 2 months of Rifampin+mino so I'm quite convinced bartonella is playing a big role in all this.
I also think detox is helping me too.I'm on the Cowden protocol and IV Glutathione.
Posted by BJK (Member # 13251) on :
It never ceases to amaze me....this disease can affect the body in just about every and any way!
Before diagnosis I had severe neurolocical symptoms. One was a headache but mine was more like my head in a vice together with confusion and severe sound sensitivity and ringing in my ears, and other "stabbing" headaches of different types were not as regular.
I also had balance, gait and severe coordination issues.
After 10 months of oral abx , biaxin, ceftin, recnetly added plaquenil. The balance is better (not all better but very significant improvement)but nothing tried has helped the headache except for klonopin.
The downside to controlling this with klonopin has been the side affects- fatigue mainly...like I need more of that!
Recently I have seen a LD specialist in NY, DR K.L. and he is suspecting co-infection even though every test at several different labs show negative for any of the co's.
High on the list of suspects is Babesia (confirming what many on this board have suggested to me in the past)but after same recent study Im wondering about bartonella as well.
Next week I'll find out what he and my LLMD are planning to try.
I understand the scared feelings, particularly when it come to my cognitive impairments and my recent increase in stabbing bone pains and periodic spells of other symptoms I thought were gone.
The specialist had me get a SPECT scan done. This showed my entire brain having lesions, white matter, poor blood flow and some other "stuff" that was to far over me to understand.
The SPECT scan was specific to Lyme and while it doesnt make me better it did expalin some things. (all past MRI's were normal..this is a differnet scan).
As I have heard on this board, not all have anything show on MRI or SPECT but still can have severe neurological problems.....wierd.
You'll be in my prayers
BJK
Posted by Ellie K (Member # 12056) on :
You're not on Rifampin are you???! That stuff made me feel like I was on a rocking boat out at sea in the middle of a horrible storm. It's the only drug I refuse to take.
Sorry you're going through this. I prefer to rest in complete silence, darkness, during periods like this. It often helps to put an herbal eye mask on.
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