lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
I get similar headaches when I'm herxing from bart treatment. I always lower my dose when I experience this because the headaches just don't go away.
If you are experiencing any kind of stiffness and pain in your neck you really should be checked for meningitis. Either way it's something you should bring up to your LLMD.
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
I've had this kind of neck/head pain for 3 years now.
It is at least 65% better now due to long term doxy and plaquenil.
I haven't taken pain meds only because I was afraid of becoming dependent on them.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
For quite a long time, I thought my brain was swollen and it felt like my skull was just too small for my brain.
Until my LLMD did this: poked around the back of my skull with a knuckle, found a bump, and pressed hard on it. Amazingly, the top of my skull no longer hurt, but the spot she jammed the knuckle with hurt like heck.
The bump was a muscle spazm, caused by magnesium deficiency. The pain I felt across my skull (and sometimes face, ear, through my jaw, or over my skull to behind my eye) was referred pain from the spazm.
Could this be you? Poke around a bit and see if you can find a knot or a spot that you may not have realized even hurt.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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posted
Luluylemom, my LLMD tested my co's at LabCorp which I've heard isn't as reliable as Igenex. Everything was NEG except mycoplasma's and an inflammation marker which was very high (my head isn't working too good??).
How do I test for meningitis? Oh gosh, I hope it's not a spinal tap. I am seeing my doctor's assistant this afternoon as he's out seeing hospital patients.
I was in the hospital 2 weeks before Christmas taking Vancomycin IV twice daily and then 10 days out-patient once daily. Maybe this heavy dosing caused the headache.
Dekrator, I just stopped the DOXY & Bactrim and recently started Plaquenil (5 wks.). Also stopped my 2 injections of Enbrel and later restarted 1 injection after unbearable joint pains returned.
I haven't been too concerned about addiction to pain meds since I learned from a Pain Psychiatrist that addiction and dependence are totally different. I've been taken off the Fentanyl patches twice with a drug called Suboxone and it has been quite effective and worked. With this pain I have had to conclude that there are far worse things in life than pain-dependence and some have to rely on it to get thru the day.
Lymeinhell, I couldn't feel any type of bump on my neck but I have had 2 anterior neck fusions and maybe the Lyme is having a party right now in the scar tissue. I will start taking Magnesium as soon as I can get the pain controlled.
I truly thank everyone for their suggestions, it really helps as many of you have been battling this longer than us newer ones. My LLMD did say I had probably had Lyme 20 years from all the symptoms I've had thru the years. I just didn't have a doctor from the 50 or so I've seen that would stand up for him/her self and say it was Lyme. I now have a doctor from Haiti who is familiar with both Lyme and Morgellon's and I no longer have to drive 5 hours to see a Lyme doctor.
Blessings to you all!
Lady
Posts: 245 | From Texas | Registered: Jul 2009
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posted
Oops, Leluymemom, sorry I misspelled your name. I blame it on my thinker (not age this time).
Posts: 245 | From Texas | Registered: Jul 2009
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
No worries, ladyjenie, lulu would be fine.. It's unlikely you do have meningitis, that would present with high fever as well but it's something I think of when a bad headache comes on suddenly and doesn't go away especially if it causes the neck to be very stiff and sore. It is confirmed by spinal tap.
Knowing now that you were on the IV vancomycin and the outpatient treatment that could be the cause. Are you having regular labs done? After heavy dosing your liver enzymes should be checked.
posted
Just an out-of-the-box suggestion, have you tried a chiropractor? I've been seeing one since before I was diagnosed, and sometimes she does adjustments that really help with the pain.
For some reason my atlas (the top of the neck bones) get seriously twisted and out of whack so that I can hardly move my head, and I get bad tension headaches with it as well.
She adjusts something in there, and I get at least some relief.
If nothing else helps, it may be worth a shot.
Posts: 303 | From Pennsylvania | Registered: Jul 2010
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posted
Lulu, my new doctor is very savvy on treating Morgellons. After I got a bag of IV Vancomycin he tested my blood levels before I was given the next dose 12 hours later. I was given a bag of fluids (saline I suppose) in between each session. Somewhere in the mix I was also given Protonix, chewable probiotics and some type of probiotics that were flakes mixed in applesauce. I was quite impressed he knew to protect the digestive tract.
Also, he has been so considerate of the social aspect of this disease. He wanted to know if any of the hospital nurses made me feel uneasy about my lesions or asked questions that made me uncomfortable. I told him I have learned to accept that people aren't familiar with the ugly ole lesions so how could they not stare. Of course I try to cover my face with Estee L Double-Wear but am still embarrassed of the sores.
I had extremely high blood pressure at my visit today (192/110). The doc didn't know if the headache was the cause of the neck pain or vice versa. I was given an injection of Tordol that helped my pain somewhat and a script to Atenolol.
Starfall, I have considered a chiropractor but didn't want one that was a back-cracker as I've had 2 neck fusions and can't have that type of pressure on neck. I have been so self-conscious of the Morgellon's skin lesions that I felt uneasy about stripping down to a hospital gown.
Those unfamiliar with Morgellon's may not know that the lesions bleed terribly. It takes months for the lesions to heal and when they do another one surfaces. It is so frustrating and relentless. I have been treated so ugly with this stuff.
My last doctor accused me of self-mutilation and sent me to a Psychiatrist. The Psychiatrist was so goofy he told me he didn't treat any type of skin condition and wanted to up my depression meds. Also 2 visits to Psych units for the scratching because same doctor didn't believe I had a legitimate condition and said I didn't have Lyme, either, and needed to quit assuming based on what I read on the internet. Grrrrr!!!
Posts: 245 | From Texas | Registered: Jul 2009
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
ladyjenie, high blood pressure in itself can cause headaches.. I've been there too with elevated blood pressure and was perscribed atenolol. I took it over the past 8 or 9 years and stopped last summer when I began taking Magnesium and CoQ10..
I have to say that my dose was very small and more preventative than therapeutic.
I'm sorry I don't know alot about Morgellon's but I have heard discussion on this on the Canlyme forum as well as Murakami Center for Lyme forum.
I do believe that treating parasites would help in this situation if you haven't already.
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
You probably know these but in case you don't. Do not use aspartame or any artificial sweeteners. Read your labels & stay away from processed foods. More and more it is easier to find things like ketchup that have real ingredients. Maybe a little more expensive, maybe the kids don't like it, but so much better for you in the end.
I've been relatively headache free since forgoing my diet cokes. I know you said neck pain too, but you have to eliminate all the excitoxins to get at the main root of your pain. Just my humble opinion.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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posted
"Starfall, I have considered a chiropractor but didn't want one that was a back-cracker as I've had 2 neck fusions and can't have that type of pressure on neck. I have been so self-conscious of the Morgellon's skin lesions that I felt uneasy about stripping down to a hospital gown."
ladyjenie--If you want to, I could ask my chiro for names of some non-back-crackers in your area. She said she has contacts to chiros in other states, so if you ever want to go that route, just pm me, and I'll talk to her.
My chiro is really gentle and doesn't do the radical crap that some do--I can't remember what it's called.
Posts: 303 | From Pennsylvania | Registered: Jul 2010
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posted
apljack, yes, I try to shy away from artificial sweetners. I rarely drink a soda, have gotten habit of crunching on ice all day. It has really helped my water intake.
My headaches could be lyme reacting to the ABX I took in the hospital as it was dosed twice daily for 14 days. The back of my neck is so irritated I know it is spine related.
My pain doctor wants to sever the nerves causing the pain. I've been thru all those procedures before my neck surgeries and I won't do it unless I have the doctor's word he will administer something for pain as I don't want any more pain than I already have. It would be great to get relief from these headaches. Maybe I could throw my heating pad away, I use it every night for the pain.
May wellness be yours.
Posts: 245 | From Texas | Registered: Jul 2009
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It's unlikely you do have meningitis, that would present with high fever as well but it's something I think of when a bad headache comes on suddenly and doesn't go away especially if it causes the neck to be very stiff and sore.
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