posted
Had horrrible headache suddenly come on two weeks ago. This was not like my usual lyme headache (this was worse, if you can believe that.) and we all know how bad lyme headache can be. I had to go to ER (twice). This was a nightmare. It is horrible having lyme and being in the hospital. Was in the hospital for a few days. Went through every test in the book. Waiting on some results still. Head is now slightly better, but still bad.
Anyone else have this lately?
Posts: 47 | From WV | Registered: May 2006
| IP: Logged |
trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
i was hospitlaized for headache when i was on rocephin in 2001. IT was horiible! I really feel for your pain.
the ONLY thing that eventually helped me was to do detoxing baths with epsom salts and then peroxide.
I soent 5 days in the hospital but they didnt do anything THERE that helped except the first bit of demerol--that did help the pain.
Let us know how you are doing and if anything is helping.
Posts: 1950 | From New Mexico | Registered: Sep 2001
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
So sorry to hear about the worse headaches you are having.. poor thing! I am cringing just hearing about it!
Yes.. feeling really bad and having to go to the duck motel is a terrible combination!! No one should be subjected to that!
What do YOU think is going on? Herx? Sinuses/fall allergies? Babesiosis headaches?
Or even medicine sick??
Wish I could help!!! Can you describe the pain for others? Maybe someone can relate better??
Most important.. feel better soon.
And.. this will sound dorky.. but sometimes a cold wet wash cloth can make the head feel better for a bit. I assume you checked with your LLMD?
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by lymefighter7: Went through every test in the book. Waiting on some results still.
Hello Lymefighter. I'm so sorry you're suffering. I feel for you.
You've said you have an LLMD. Did you let him know you were being admitted? It seems as if your doc is not taking care of you or directing your care. Are you sure he/she is an LLMD?
I suspect it's hard to find an LLMD in beautiful West Virginia. (I'm a Virginia native!)
You've said you were being sent to a neurologist and wondered what tests you should ask for. I'd wonder, what tests did the hospital already do? Did they do a brain MRI or PET scan? Maybe a spinal tap? Seems like they shoulda done somethin' to justify their duck existence since they kept you so long!
What is the status of your co-infections? Because headaches of this magnitude are suggestive of babesia. Have you been tested?
Many doctors will treat with anti-babesial medications even if you test negative, because there are so many strains of babesia and only two are tested for. Naturally, the hospital (and the neurologist) will not know this, only an LLMD will.
If you can fill us in a bit more, maybe we can help.
The only med that will touch my headaches is Relpax, a vasodilator. It must be taken very sparingly and is pricey. It is not a pain med, but rather, increases blood flow to the brain. Maybe you can get a couple samples from one of your docs.
Wishing you better head days...
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
| IP: Logged |
posted
Thank you all for your care. No, I have no LLMD at this point. Was patient of Dr. B. There is no one around WV area that believes lyme exists. I went through spinal, MRI, CT, MRI with dye to check for bleeding, ect.
The ducks were like, "oh, so you had lyme,did you go out of state or country? you are treated and well right?"..... "I was like no I have lyme I have had it for years and I am still having problems you idiot."
They gave me reglan and benadryl (i.v.) to begin with. They said this would help the pain in head. It did NOTHING. They then gave me neubain(not sure if I spelled that right). This was 1st ER trip. Second ER trip they gave me the same as before. I told them it didn't help the first time. They gave me demerol in the end but only 25. I told them that my pain level was extremely high. The nurse I had was a jerk. She came in turned on the light clicked her pen and said, " we don't give any higher than demerol 25 not even for cancer paitents." then left my room.
She is full of crap!!! I proceded to cry to my husband, because he new how much pain I was in and no one seemed to understand. Why doesn't anyone understand how painful lyme and complications can be? I didn't know what I was going to do.. I was stuck in a hospital at the mercy of a bunch of ducks and their tests and in horrible pain. Meanwhile the lady next to me with fibromyalgia was gettting all the relief she needed.
This is not the first time I have been through an added problem in this kind of situation though. It is very frustrating though.
I have tried ice, heat, baths, and everything I could, nothing helped much. Pain was all in head , but mostly in back of head going to ears and down neck. Like I said I have had lyme headaches in past but not the same.
I have tested pos. for bartonella, but I don't think Babs. Hopefully I get some relief soon though.
Posts: 47 | From WV | Registered: May 2006
| IP: Logged |
posted
Forgot to mention. Pain duck at hopital told me the only option he was going to give me for pain upon leaving was steriods shot up into the base of my head. I told him NOT ON HIS LIFE.
Posts: 47 | From WV | Registered: May 2006
| IP: Logged |
posted
Have you ever tried Imitrex or some of the migraine meds??
I feel for ya. I used to have killer headaches.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
lymefighter7,
This head pain you're experiencing with the stiff neck and around ears seems like neuroborreliosis infection or borelia-encephalitis... You need some IV abx's...
In the mean time try Coffee as a vasodialator...
I treat with two cups of coffee and an advil one half hour apart....this I know is not recommended for lyme...the coffee I mean and the advils are a mild anti-inflamm...
But hey...I've been dealing with migraines all my child and adult life and this is what helps me!
You may also get some relief by standing in the shower with the hot water(not too hot) hitting you directly in the face and forehead.
Other than that is a neuro-biofeedback techniqe I discovered back in college...a type of self hypnosis or meditation...
However I do believe you need to get the chete level in your brain down so that the thick blood Hypercoagulation will be reduced...you may also get some relief from the heparin durring your IV treatments...
Maybe try garlic supps to help thin out your blood.
Good luck.......zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
| 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!
![[Big Grin]](biggrin.gif)
Printer-friendly view of this topic