posted
This post was originally under an existing thread but getting no response, so I have re-posted with a new topic, hope that ok?
I have headaches 24/7. I have had them for about 4 years, with a break of 6 weeks last June/July. We have not found any cause for that break. Currently, almost everyday is terrible, but I might get a 2-3 days a month that aren't quite as bad. When it gets bad, as it is now, I get desperate & ready to try anything reasonable. I believe they are from Lyme, as most other causes have been ruled out. I would call them pressure headaches, with the pain usually worse at the temples or the brow. Sometimes though they just seem to come from the mid area of the brain.
I have tried the typical range of narcotic painkillers, as well as Acetazolamide, they gave me little help. I now take 75mg of Amitriptyline each night , and 1.5 mg Lorazepam each am. I went to the Lorazepam each morning because the headaches were so bad when waking. It does help for a few hours and to get me functioning. I am about to try Imitrex (Sumatriptan), but have my doubts as this is for Migraines.
I saw a posting about using direct oxygen and would like to know more about that. I will also be considering Medical Marijuana. Has anyone tried that? Any comments?
Any other ideas?
I am cureently on Rifampin, Tindamax and about to start AL Complex by Byron White. My LLMD wasnt seeing enough progress on just ABX so they added the AL Complex.
Desperate and Sleepless but not in Seattle
Posts: 164 | From California | Registered: Aug 2009
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posted
Have you been tested/treated for babesia? It and bartonella as well are known for causing terrible headaches.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i'm in this boat also. mine started march 9th with a 10 plus, now i'm down to about 5-6 every single day.
mri came back normal. nothing helps, not even vicodin.
guess i'll have to tough it out.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
over 3 1/2 years here with the headache..narcotics, migraine meds, nothing touches it...only slight relief from hot rice sock alternating with ice pack. I also tie a sock around my head or wear a visor pulled really tight..brings some slight relief.
i also had a break after IV Invanz and having done medsonix treatment. Hyperbaric oxygen tx made other symptoms worse for me, never did straight oxygen, unless you count what they give you in the ER for heart presentations
good luck, pls. post if you find relief.
Posts: 3975 | From usa | Registered: Aug 2007
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fflutterby
Frequent Contributor (1K+ posts)
Member # 28081
posted
OMG me too, I have a cold so maybe it's extra pressure? I can't take this pain. I tried Naprosin, advil. I have to function or I would take hydrocodone at this point. Haven't taken any pain meds through the course of this 7 months.
Today it is like a burning sensation that goes through the back of head, my neck, my jaw and back. This is horrible that nothing can help us!!
-------------------- Psalm 46 1 God is our refuge and strength Posts: 1367 | From North Jersey | Registered: Sep 2010
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posted
Last night I had a 9 headache and an 8 pain in shoulder. Broke down and took a Vicodin, it helped the shoulder and made the headache worse. So maddening, I am visiting grandkids and cant give them my all that I so badly want to give.
Posts: 164 | From California | Registered: Aug 2009
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posted
Lymetoo- I have been tested for co-infections, but nothing positive yet. I believe that I have been treated for babesia/bartonella, but not sure about that.
If I did test postive what would be the typical next step? Would that help with the headaches?
Thanks for the response.
Posts: 164 | From California | Registered: Aug 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Are you taking any sleep meds that could be making the pain worse?
Before I knew I had lyme my headaches got so bad I understood why people kill themselves.
My insomnia was sooo bad that I tried sleep meds and found that Ambien CR was making it alot worse. The Ambien must have stirred up the infection.
It went from a 10 to an 8 after I discontinued the Ambien CR....which was still bad but anything was a help.
So far, doxy is the only thing that has helped my pain....head and neck pain is about 65% better.
I suspect that Bart is contributing, so now I'm also on Rifampin.
-------------------- 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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posted
My God I have been having the same problem for two years now: here is what I finally came up with: those headaches are due to excessive secretion of seortonin, mine is like times higher than usual... what this creates is basically a congestion in the nerves where serotonin circulates... Thus the pressure and pain (kind of inflammation of cranial nerves)... As heat kills serotonin, this is why we can have a bit of relief from the pain, but it keeps coming back... There are few mnedications used to reduce serotonin but they seem quite dangerous so I am not sure I want to try what's on the market, plus doctors are a bit reluctant... Sometimes the excessive secretion can go on its own, or take a break and then come back... SO this is not too dangerous by itself it's just debilitating... I have now started a low serotonin diet, and have been looking for all means that can reduce it just so my nerves and brain can keep the right rythme for the flow of neurotransmitters... If anybody has suggestions, please feel free to add them...
Posts: 723 | From Montreal | Registered: Oct 2010
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quote:Originally posted by pooldog71: Lymetoo- I have been tested for co-infections, but nothing positive yet. I believe that I have been treated for babesia/bartonella, but not sure about that.
If I did test postive what would be the typical next step? Would that help with the headaches?
- Do not rely on the testing. It's as bad or worse than Lyme testing.
Find a dr who will treat you for them. Many LLMD's will give a trial run of meds for suspected coinfections to see if you respond.
posted
My daughter had a headache 24/7 for over 3 years. She said it was a 9 or a 10 on the pain scale with 10 being the highest.
Her headache has actually gotten a lot better recently with babesia and bart treatment together. She says sometimes it isn't there at all and when it is, it isn't very bad.
I can only hope that it stays mostly gone, but for now, treating both co-infections has made a difference. Treating one at a time never did anything for her.
Posts: 984 | From US | Registered: Dec 2007
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posted
Serotonin (5-hydroxytryptamine, 5-HT) is a neurotransmitter implicated in many disorders of the central nervous system. It has been shown to play a role in headaches. Serotonin can constrict blood vessels leading to the stimulation of pain receptors. Many serotonergic receptors have been located in cranial blood vessels. Excess serotonin has also been shown to lead to headache symptoms. Therefore, serotonin manipulating drugs are being thoroughly considered and studied for headache sufferers... http://www.davidson.edu/academic/psychology/ramirezsite/neuroscience/psy324/aapatton/anatomy.htmPosts: 723 | From Montreal | Registered: Oct 2010
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posted
It would be interesting if everybody could tell us how it started... Mine started after an oridnary bronchitis for which I took abx... it hasn't left since then... and abx only seem to make it worse...
Posts: 723 | From Montreal | Registered: Oct 2010
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posted
I believe my headaches started as my first symptom of Lyme. At the time I thought it might be associated with seasonal allergies.
I will be looking at the coinfections more closely. It looks to me like I have Bart and need more treatment for that.
I think the Sleep meds like Ambien can be problematic when used for long periods of time. I do not use any, the Amitriptyline is supposed to help with sleep. Right now, my headache is so bad that it is interfering with sleep.
I will researching the Serotonin connection.
Has anyone gotten any relief from direct oxygen or Medical Marijuana? I am desperate for some immediate help. I know discussing Marijuana in an unemotional way can be difficult. I really do know the risks & disadvantages. But I want to hear how it has helped (or not) with headaches, how it is used, how much and when to use.
Lets keep working for help and an answer
thank you to all who respond
Posts: 164 | From California | Registered: Aug 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
I didn't explain myself very well above.
It was the Ambien CR, in my case, that triggered the 3 year headache and neck pain I've had.
My LLMD says it probably stirred up the infections.
Before that, I had fibromyalgia, insomnia, etc, but no headaches at all.
-------------------- 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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posted
Dekrator, according to your LLDM, does that mean the headaches were a good thing or not? if the meds stirred up infection, was that a good thing? Then does your LLMD advice to take it again?
Posts: 723 | From Montreal | Registered: Oct 2010
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Triptans The triptans are also known as serotonin agonists and are the most widely prescribed drugs for migraine. They imitate the actions of serotonin in the central nervous system. Serotonin prevents the dilation of the blood vessels and the release of other substances that cause vasodilation and irritate nerve endings in the brain.
The effects of triptans usually wear off before the migraine is gone, so patients may have to repeat doses during a migraine attack. People with heart conditions should not take triptans.
Side effects of triptans include tingling sensations, dizziness, weakness and neck pain. One to five percent of people taking triptans experience chest pain. Since chest pain could indicate something serious, people with migraines should always seek medical attention for chest pain.
Posts: 723 | From Montreal | Registered: Oct 2010
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posted
I read a book on light therapy a while back, but I can't remember which color lights are supposed to help headaches and migraines. For some reason I'm thinking it was red, because I remember thinking a warm color was an odd choice.
Now wait, here...it was red light for migraines...
-------------------- Urge Congress on EMF Safety, FCC Must Change Exposure Guidelines for Microwave Radiation Exposure: http://tinyurl.com/2cjq54y Halt Universal Broadband, A Public Health Hazard: http://tinyurl.com/3x7xrmq Posts: 495 | From USA | Registered: Mar 2010
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posted
Lately I've been getting headaches in the evening. For me a pinch of turmeric with a strong cup of green tea gives relief (use 2 bags while brewing). Both substances are blood thinners.
Posts: 655 | From USA | Registered: Sep 2007
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posted
These headaches are called tension headaches, and no one seems to know the reason for this... jkmom, what's your daughter's combo for the bart and babs?
Posts: 723 | From Montreal | Registered: Oct 2010
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Shahbah,
No the headaches were not a good thing and I would NEVER take Ambien CR again...I thought I would die.
Up until I took Ambien CR, I did not know I had lyme.
My symptoms were mostly fibromyalgia, insomnia, fatigue, brain fog.
Shortly after starting Ambien CR I developed head, neck and shoulder pain and stiffness that felt like a 4 inch diameter drill bit was drilling through the base of my skull and coming out my mouth 24/7.
It was the most horrible thing I have ever felt. It was a very intense dull, grinding, burning pain and there was no relief.
I did not have a LLMD then since I did not know I had lyme.
My PCP gave me muscle relaxers! That did nothing.
I continued the Ambien CR because I wanted to sleep so bad and it was the first thing that helped me sleep...although I had memory loss while taking it.
I stopped the Ambien CR after 4 months and the pain reduced from a 10 to an 8.
I did my own research and discovered I had lyme.
-------------------- 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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posted
thanks jkmom, adn dekrator, one last question fro your dekrator: are your headaches much beter now and how long did it take? Thx a lot.
Posts: 723 | From Montreal | Registered: Oct 2010
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Shahbah,
My head and neck pain is about 65% better from many months of doxy and plaquenil.
I've been treating 2 years. I did not take doxy during those 2 summers, but took it most of the other time.
I noticed the start of improvement of pain at the 9 month mark.
I think if I can hit bart really well, it will help.
-------------------- 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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