posted
I dont really ever have the joint pain issues, which has been enough for doctors to dismiss me and tell me I don't have Lyme when I have my very positive test in my hands to show them.
Most of my problems are of a psychological nature and really weird head sensations.
I mostly get panic attacks that last hours, severe depression, sudden fits of anger, crying fits, numbness of the head, dizziness, depersonalization, sudden weakness, head pressure with popping sensations, and eye problems.
there have been other things along the way, but those are the problems that plague me most.
Until now. In addition to the head pressure, I now get this really intense pain my head that drs classify as a headache.
This does not feel like any headache I have ever felt.
When not as intense it feels like a sunburn in my brain.
when very intense it feels like someone is shoving an ice pick in my temple every few minutes and then my head goes numb again.
Everytime it happens I swear I am about to die.
Now i'm starting to doubt myself. Ive been taking antibiotics for a while, I dont seem to be getting much better. Maybe they are all right, it's all in my head and there is nothing wrong with me?
Posts: 44 | From Maryland | Registered: Jul 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Well, It is in your head and you have the tests to prove it. Neuro lyme. I am one who also has most of their symptoms in my head.
Pressure, headaches, lightheadedness, eye problems, ear pressure, swallowing problems. Numbness and tingling of face. Severe anxiety that has gotten somewhat better.
My headaches and head pressure are letting up some on amoxicillin. First time in over a year any relief in this area. Just keep plugging away until you find what works for you.
Best, Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
I'm so sorry you're going through this.
I have or have had a lot of the same symptoms you have, but I haven't had a positive test/
In the beginning (last summer) I had a lot of the joint/neck/TMJ pain, but most of that has slacked off.
The majority of my problems right now are vision related, shortness of breath, numbness on one side of my face (varies as to which side), and some feelings of panic.
I've been told too that it's all in my head, and I just need a psychiatrist.
I resist the panic attack diagnosis because my "panic attacks" last for days or even weeks.
I won't see a LLMD till March, and I'm really hoping he comes up with something, because I know I can't live like this either.
Keep plugging away, and trying to find a combination of meds and supplements that works for you! Good luck!
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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posted
I know how tough this is, and I am sorry you are going through this too.
Most people, and doctors, cannot understand this pain. It is not a headache or migraine, I have those too. This pain would wake me from a sound sleep and make me crawl into a ball. I couldn't move, I also thought I was about to die. There was a time before I started a more aggressive tx that I lived with it 24/7.
My severe head pain did get better with amox, but when other meds txing bart and mycoplasma were added, that is when I started to get more relief.
Try to hang in there, stay strong and don't doubt what your body is telling you.
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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posted
I am sorry you are having these headaches. I had one for 3 weeks without a break. I was pulling my hair to deflect the headache and feel the pain from pulling my hair. My LLMD said that it is not necessary to suffer like that. It's like no headache that anyone could understand unless you have been through it. My LLMD started to treat me with pain meds for the headache. God Bless him. They worked right away. I had one in his office that was so bad that I couldn't continue our appointment. He saw how much I was suffering because my blood pressure went ski high. He then gave me a shot of Demerol to stop the pain and a shot of adavan to stop the headache from coming back for awhile when the demorol wore off. Find a good LLMD. They know how to treat you the best. good luck
Posts: 19 | From New Jersey | Registered: Dec 2007
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posted
Been there, done that, still going through it at times.
In the research Ive found, it seems as though people tend to have different areas of their body hit more severe then others. Just because you have the neuro lyme and not the muscular as bad doesnt mean you dont have it. Quite the contrary, you probably have some of the worst symtoms you can get.
With severe neuro lyme, all the senses, emotions, memories, cognitive, etc are all affected.
Yes, it can be scarey and freaky to go through it. If the brain was swelling during different episodes, its possible you may have encountered some brain damage as well, which may take months, years to recover from.
Be patient and slow with your recovery..
Heres a great site for brain/meningitis/encephalitis recovery and may answer some of your Qs...
posted
My husband has had head and eye pain now for 7 years...only 9/06 did we finally get a pos for lyme...he has be in treatment now just over 2 yrs and not much has changed...but we know that this is a fight and it may take awhile...his Lyme Dr. is giving him all the meds and suplaments that others here are on...so hang in, i know its bad and your head feels like it going to blow up..your eyes pain...i see it every day and wish i could help...you are not alone...take care
-------------------- madgen Posts: 342 | From newjersey | Registered: Oct 2007
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posted
I had a severe head pain on my left frontal area and it was there forever. My Lyme treatments helped it but it wasn't until I did aggressive Babesia and Bartonella treatments that is truly started to subside. They were awful encephalitis type pains and one can never forget them- quite different than a migraine.
Posts: 238 | From Bethlehem, PA | Registered: Oct 2004
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I had excruciating head pain once. They lated for a while off and on. I finally was taken to Er and referred to a nuero.
The nuero said I was having multiple musle spasms in my head and wanted to give me 17 shots of Botox in the head and face.
I declined and took some muscle relaxers. I don't know why, but I have NEVER had them again like that.
At that time i thought someone was going to find me dead becuase my head literally blew off my head from the pressure and pain.
I have head pain, etc every single day. I have never in my life felt pain like that. It was undescribable. And I know it was not a migraine. Light /noise made no difference what so ever.
Maybe you should try some muscle relaxers. But know if you have kids, you will need someone there. Atleast I did. It put me to sleep for like 15 hours.
Hope u get better.
Posts: 117 | From Winston Salem NC | Registered: Sep 2008
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
I've had what I call "electricity storm" headaches that are excruciatingly painful. I haven't had one in awhile, thank God, but when I do have them they make me scream and pull my hair.
My husband gives me oxycodone and valium for these headaches and that seems to help.
They are not like a "regular" headache. I feel like my brain is frying and sizzling. It is horrendous.
Treatment for bartonella has helped me, too.
You are not crazy. God bless. - Lymelady
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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