Never Ending Headaches

[jbower79]

Hi All,
Just wondering if anyone has ever suffered never ending headaches with either Lyme or Scleroderma. when Abby first started having symptoms 3 years ago, she got a headache that lasted 10 days. Nothing gave her relief and we did it all — ER for all the drugs they typically use to stop a headached (migraine or otherwise). We saw a neurologist who gave her Imitrex, Topomax and the calcium channel blocker. Nothing worked for her and then it finally went away. She always suffers from daily headaches it seems but this is only the second time she has gotten this debilitating headache when she also gets dizzy and has increased motion sickness. She gets very anxious about getting in a car because it makes all symptoms worse. She has been home from school with this headache since last Wednesday. We have tried all the regular pain meds for headaches again plus a few more like muscle relaxers etc. NOTHING WORKS! The only thing that helps her get a bit of relief is if she does something that normally relaxes her like baking…none of us need to eat more baked goods.

Anyone have any suggestions. She is getting so far behind in school but can’t even read for pleasure as it makes her headache worse. She does go to see her LLMD tomorrow. I also emailed Dr. S. He thinks she would benefit from doing another IV treatment. Do the Clindy IVs attack Lyme too? It is hard to try and treat the scleroderma but also keep tratment going for the Lyme.

Uggggh! I hate this illness. Beyond Abby’s suffering, it is destroying the rest of the family too.

Thanks for any suggestions!
Joyce

[PhilC]

Hi Joyce,

Is Abby taking any vitamins? And far as antibiotics, is she taking only azithromycin currently?

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Eva Holloway]

Have you had Abbey eyes checked and also checked if she has vertigo. My girlfriend has that and she gets some bad headaches with it. Just a thought.
Eva

Eva Holloway

[jbower79]

Hi Phil,
Abby is actually only taking Augmentin right now. I think she needs to start something else soon. Before her last strep infection in January, she was only on Azythromycin 2-3 time a week. She does take vitamins — B12, B5, and a multi mineral. She takes plenty of probiotics and then 1600-2000 mg of magnesium to help with bowels.

Trudi, nobody has specifically tested to see if she has vertigo. How do they test for that? You would think the ER doc or her primary care doc would think to check for that given the duration of her headache.

Honestly, we have lost total faith in the medical community.

Thanks for the input!
Joyce

[jbower79]

Eva — sorry I thought I read Trudi’s name on your post.

Abby actually went to see the eye doctor Monday morning to have her eyes tested. Everything was fine. she has worn glasses/contacts for about 8 years.

Joyce

[cavalier]

yes very much the same – have SD – eyes, vertigo has been checked – hope this message comes thru having trouble – am hoping dr S will be of some help. i think it maybe from the narrowed blood vessels due to scarring.

jill

[Parisa]

I’ve been doing a lot of reading about the MTHFR gene mutation lately and I believe I saw a reference to constant migraines. If I can find it I will post a link.

[maz.aust]

Maybe it is an allergy she has developed or alternatively perhaps like my daughter who suffered from migraines at the age of 10 she can’t have chocolate (a big no no) and has to limit sugar & is intolerant of preservatives, when we cut all of them out she managed to get through school .. in her last year of high school before university she was tested and at 18 was still the same, oh & the other biggie she had to cut out was oranges, she can’t have oranges .. Her specialists have told her for years that chocolate, preservative intolerance & oranges are the biggest causes of migraine.

I can empathise with how you feel, it’s so hard when the headache is relentless and they are studying and you can’t do anything.

Hope you can pin it down,
Maz.Aust 😉

Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)

All off days Probiotics

[Trudi]

Hi Joyce–
I am currently reading a book called “Vitamin B Therapy: Nature’s Versatile Healer” by Dr. John Ellis (A Friend, one of our members has spoken often of this book). I am reading it because of the B6 connection with carpal tunnel–my husband is having some problems.

http://www.amazon.com/Vitamin-B6-Therapy-Natures-Versatile/dp/089529866X/ref=cm_cr_pr_product_top

Dr. Ellis talked about the benefits of B6 for headaches. I did a quick search and there were some 3 million sites that came up. Here are just two:
http://www.livestrong.com/article/457907-vitamin-b6-headaches/
http://migraine.com/migraine-treatment/natural-remedies/vitamin-b6-for-migraine-headaches/

Lots of information in the book pertaining to arthritis and low Vitamin B6 levels. Just checked a test I had done a few years ago, an Organic Acids Test, and although I am within range with Vitamin B6, I am very low (5.3 out of a reference range of 0-34); needless to say, I’m going to do a little more checking into Vitamin B6.
http://www.greatplainslaboratory.com/home/eng/full_oat.asp

My best to your daughter–
Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[PhilC]

Hi Joyce,
@jbower79 wrote:

She always suffers from daily headaches it seems but this is only the second time she has gotten this debilitating headache when she also gets dizzy and has increased motion sickness. She gets very anxious about getting in a car because it makes all symptoms worse. She has been home from school with this headache since last Wednesday. We have tried all the regular pain meds for headaches again plus a few more like muscle relaxers etc. NOTHING WORKS!

This sounds to me like it could be an inner ear problem. Have you tried, or has anyone suggested, a drug for motion sickness such as dimenhydrinate (Dramamine)?

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[jbower79]

Thanks All! We have tried about everything including most of the suggestions made here. We saw Abby’s LLMD yesterday and she is treating for Bartonella. We are still trying to decide whether to do another round of IV treatments with Dr. S. Abby can barely stand riding in a car so we may not be able to do them if it is a necessity that we do them in Ida Grove. I am corresponding with Dr. S. to see how he may be able to work with our local doctor to do treatment.
Abby feels really bad tonight. She still has the headache, but does not feel like eating and must be running a fever (even though her temp is 98.6 she normally runs low around 95 or 96) because she has the chills pretty badly. She did start rifampinn yesterday. Anyone have experience with that abx?

Thanks again to everyone with suggestions — all very much appreicated.
Joyce

[jaminhealth]

I had a HISTORY of allergies/sinus and sinus headaches prior to 1995 when I started on Pycnogenol and stayed with “P” for the first year and then switched to Grape Seed Extract which I’ve been taking for 16+ yrs….NO HEADACHES, no allergies, no sinus issues…..

G.S.E. thins blood and CLEANS blood, so if one is taking a blood thinner, then CAUTION…..jam

[jbower79]

Thanks Jam, I may have to have Abby give “P” a try. She has had this headache since February 23rd. Nothing has helped even touch the pain. She can’t do anything. We have tried almost everything except “P” with no success. Her MRI was clear so I don’t know what to do or where to go next. I know making an appt with a neurologist will be a waste of time not to mention that it will take weeks to get into one. I am hoping this does not go on for that long.

Has anyone experienced aseptic menningitis from either mino, amoxi or augmentin. Those seem to be the most talked about abx to cause this condition. Abby was on Augmentin 875mg 2xday since January 26th. I just stopped it the day before yesterday to see if that helps. I know it will take a few more days to completely get out of her system, but the headache is getting worse not better. I have also stopped the Rifampin she was taking for Bartonella in case this is a major case of toxic die off.

Does anybody fear that they are going to die? I think Abby is at that point.

[Maz]

Joyce, I’m coming into this discussion late as I’ve been away. Constant headaches can be due to Lyme meningitis and certain coinfections. Some LLMDs will run brain scans to determine what may be going on, neurologically, with the patient and to rule anything serious out. If her LLMD won’t run appropriate imaging scans, then you may need to take Abby to a neurologist for the imaging and other tests. Some things are Lyme-related and some aren’t and the more experienced LLMDs will usually run the full gamut of tests to ensure they aren’t overlooking anything.

I went through a period of severe optical migraines that were set off by plaquenil on my first try of this drug. I’d never had these before and thought I was having a stroke. I stopped the med and they went away. After another year or two of lowering the pathogen load, I was able to tolerate plaquenil again without the optical migraines (until I got digestive issues with it).

A good LLMD should be guiding you on this, Joyce, to relieve your worries and, if they don’t have the answers, they may refer Abby to a neurologist for further testing. I had to do this when I got DILE and was sent to an allergist/immunologist to confirm my LLMD’s suspicions. These docs don’t work in isolation and sometimes specialties are needed.

Scleroderma will do a number on the vascular system, too, and it might even be that Abby is getting vascular headaches that could be resolved with some other med, like a beta-blocker or even viagara. Perhaps another SDer can chime in here with insight for you, as I am not all that “au fait” in this regard and would not want to lead you off the beaten track.

Is Abby back on low dose mino or doxy? Sorry if you already mentioned this…I may have missed it. Intracranial hypertension can be a side-effect of these too…sometimes it’s benign and transient at the initiation of therapy and passes as the body adjusts to the medication, but sometimes it occurs later as a side-effect and the med needs to be stopped or switched out.

My heart goes out to you, Mom, and Abby.

[jaminhealth]

My headaches were ALWAYS sinsus related…wake up every morning with a sinus headache….NO MORE…..it’s be almost 17 yrs soon…..jam

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