Daily 10+ hour migraines that seem to go away with fluconazole

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lymelearner
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Date Joined Nov 2017
Total Posts : 7
   Posted 11/19/2017 5:18 PM (GMT -6)   
Hi everyone,

This is my first post, but I've been reading a ton here since I first was diagnosed with Lyme Disease in november of last year.

Some background about me first:

I started off with fever (went away after a few days), chills (lasted about a year -- I was wearing 6 layers of socks, 3 layers of sweatpants, and 3 sweaters and a down coat in august 2016 in 90 degree days and was still freezing), and mono-like symptoms (total lack of energy and sleeping 12-16 hours a day).
I don't have any nerve pain symptoms, and originally didn't have brain fog, but started to get brain fog about 6 months ago, and it kept getting worse.

I have come a long way since seeing a good LLMD.
My chills are mostly gone.
My energy is up (after starting hydrocortizone due to adrenals not producing enough cortisol according to my spit test. It went up immediately after starting this and now I'm slowly trying to reduce the amount I take).
And my sleep is a little better where I tend to need closer to 10 hours per day, though I still have a hard time falling and staying asleep.

My current migraine/fluconazole question:

I get brain fog that tends to start with light / sound sensitivity, inability to read / write, and it seems to be getting worse.
I now get it faster, and instead of my brainfog turning into a mild headache, it turns into a bad migraine that lasts 10+ hours, accompanied by feeling lightheaded, nauseas, feeling like I might throw up(but i dont), and feeling like I might faint (but I don't). I also get this feeling like I want to be cold and the coldness eases symptoms a bit, I can actually walk outside during it in like 30 degree weather with just a sweater but no coat and I dont feel cold, it's like a temporary superpower.

I noticed a pattern though that when I start taking fluconazole, it starts to get better about 2 days into it, and about 5 days into it I'm no longer getting migraines. I've been taken off and on fluconazole 3x and this pattern happened each time so I'm pretty sure it's related.

Has anyone else experienced something similar?

Does anyone have a clue on what it might mean if being on fluconazole makes the migraines go away? Does this mean the migraines are caused by candida?

Post Edited (lymelearner) : 11/19/2017 4:31:06 PM (GMT-7)


Pirouette
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Date Joined Mar 2014
Total Posts : 6201
   Posted 11/19/2017 7:14 PM (GMT -6)   
Hi lymelearner -

It's great that you've made straightforward progress with your adrenals! Protect your assets.

Yes, one very big possibility is that the fluconazole is reducing a yeast/fungal overgrowth. Y/f overgrowth can produce neurotoxins like ethanol and acetaldehyde, which can reach the brain through the blood vessels that connect gut and brain. Headaches, "brain fog" and cognitive sx are very common with y/f overgrowth and are caused by neurotoxin overload because your body isn't processing the toxins out fast enough.

The light/sound sensitivity could also be related--I also had those problems.

It's not a great idea to pulse antifungals - y/f can build up resistance just like bacteria can to abx. Fluconazole has a 20-50 hr half life so I would use that info and the timing of the development of you migraines to determine how to get consistent coverage.

You might prefer to stick with what you know works, which would be understandable. But often, the systemic antifungals like fluconazole that have to get processed through the liver aren't required. Generally, y/f overgrowth originates in the GI and a local GI antifungal can often address the overgrowth without challenging the liver and other organs. You can also take local antifungals that don't cross the GI mucosal barrier (like Nystatin) without getting monthly lab draws to check liver enzyme levels, like you do with fluconazole.

You should also incorporate a GI binder to bind to not only the dead y/f, but possibly even live y/f as well as the toxins from die off remove so that the y/f die off is less severe because the toxins are in your GI a shorter period of time. There are several OTC binders like activated charcoal, bentonite clay, modified citrus pectin. Be sure to drink a lot of water before, during, after taking the binder. And be sure to implement a 2hr buffer between taking the binder and consuming anything else (but water) orally.

Hope this is helpful -

-p
LYME FORUM MODERATOR

Chronic late-stage lyme—likely infected in '98; Clinically dx Mar'14 w/ Babs, Fry Labs+ Bart-like, CDC+ Bb. First treated 4-5 viruses, GI/immune. Herbal antimicrobials in May; IV port-started Rocephin in Nov; added vancomycin Mar'16;
DETOX: Pinella/Burbur/Parsley/Milk thistle/Burdock/Red root; Samento/Banderol/Enula; JK/Turmeric; BFM-1; antifung; many supps; cholestyramine

lymelearner
New Member


Date Joined Nov 2017
Total Posts : 7
   Posted 11/19/2017 9:58 PM (GMT -6)   
Hi Pirouette

Thank you so much for the extremely well thought out response! It is very helpful.

I actually had previously been on Nyastatin daily since November of last year when I started antibiotic treatment, and every few months I was told to switch to fluconazole for a couple weeks, and noticed I always felt better while on fluconazole. I had the migraines while switching back from fluconazole to nyastatin.

My LLMD actually just tried to put me a more local antifungal voraconazole (vfend), but I relapsed into these horrible migraines a few days after switching off of fluconazole to voraconazole.

You just reminded me that I actually tested positive for neurotoxins on through vcstest. And my LLMD said that means I may need to go on Questran which said should clear it out, but said it's hard medication to take due to food timing rules and all the other meds I take so he wanted to try other things first.

Did not know about GI binders. I actually have some activated charcoal but the challenge would be finding time in the day for that 2 hour buffer with the amount of pills and herbals I take in a day that need to be spaced already.

Now I'm feeling a bit more confident that this is Y/F overgrowth, but seems like something that Nyastatin, and Voraconazole don't hit. I wonder if there are other local anti fungals I can try that can accomplish what Fluconazole is doing but without as much potential for damage. Maybe I should look into natural anti-fungals as well.

Pirouette
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Date Joined Mar 2014
Total Posts : 6201
   Posted 11/19/2017 11:49 PM (GMT -6)   
Well... very interesting post.

A few more thoughts:

Cholestyramine
First, Questran IS a GI binder but it's a manufactured version of cholestyramine like Welchol and likely has fillers and maybe even sugar but certainly not much of the cholestyramine. It is cheap, though.

I'd skip it and try the OTC stuff first. If you're going to take cholestyramine for true GI binding, you need more than you're going to get in the mfr version. I take PURE cholestyramine and it's made a huge difference in my tx but it's also VERY expensive.

All binders require 2 hr buffers
Regardless of which binders you use, you'll still need the time buffers before and after it - very important so that you don't bind the stuff you want to stay in your GI and prevent it from being absorbed - and so you don't use up the binder on stuff you don't want to absorb.

I do agree w/ your LLMD that a binder is probably most beneficial so you might want to revisit that. I have been on a protocol that included doses of something every half hour from 7am until bedtime so I know how very difficult the 2 hr buffers can be. But the impact of a binder on neurotoxing can be undervalued by many LLMDs. So I suggest trying to coordinate the binder as the last thing you take before bed so that you're only trying to fit in the 2 hr buffer before the binder.

Antifungals
So - now that you mention the Nystatin experience, there is another possibility for what is going on:

With the reactions to Nystatin and Fluconazole you're describing, you could be herxing from EITHER die off or from overgrowth--it's difficult to tell. Unfortunately, as I was describing in the previous post - the yeast/fungal overgrowth can cause the same sx as the die off of the overgrowth. In other words:

- a possible scenario could be that the abx + Nystatin created herxing from die off sx, producing the migraines from the neurotoxins. And then when you stopped taking the Nystatin, the die off also stopped as well as the herxing. And in this scenario, the diflucan isn't as effective as the Nystatin.

- another scenario is as you suggested - the diflucan is more impactful against the y/f strain(s) you're dealing with so they are creating the migraines from die off. But I'm not sure about this - you'd need to be on one or the other antifungal a lot longer than it seems you have unless I'm wrong about that.

To complicate matters, if you develop yeast/fungal overgrowth from the abx, you're generally going to need to stay on antifungals as long as you're on abx. Also, if you've already developed a y/f overgrowth, it's very difficult to knock it down with natural antifungals, which are generally more effective with prevention and maintenance once the overgrowth has been rebalanced.

Generally, as long as you have sx you still have overgrowth. And many of these sx overlap with Lyme & Co, which makes this even more difficult to navigate.

Sequence
One thing that I have started suggesting to people who cannot seem to rebalance the overgrowth while on abx is to take a break from the abx, give the body and the antifungals a chance to get things under control, and then stay on the antiungals while restarting abx.

- One reason is to give the antifungal a chance to work before abx stirs the pot.
- But also, unmitigated y/f overgrowth often creates GI problems including damage to the GI's mucosal lining, where 70% of the immune system is. So this is a threat to successful treatment.
- Additionally, damage to the mucosal lining can greatly interfere with treatment (which is quite expensive) when we're not absorbing meds, supplements or nutrients well.
- And another benefit to addressing the y/f first is that you also reduce and simplify the sx, which makes it much easier to navigate the Lyme & Co tx.

Yeast/fungal overgrowth
Here is a lot more info on y/f overgrowth if you're interested:
Y/FO post in the "New to Lyme?" thread:
www.healingwell.com/community/default.aspx?f=30&m=1606610&g=3644275#m3644275

Stool test
Another thing you can try is to take a Doctor's Data stool test that also includes a list of pharmaceutical and natural antifungals that the y/f that is found is susceptible to. In that case, you might have more success with a specific natural antifungal that you KNOW is going to work against the strain(s) you have. But generally, the natural antifungals also need to be rotated so you'll need to find two.

Next steps
In your case, I think you might have success with pausing abx, get the antifungal figured out and then resume abx. It would help if you could identify other possible y/f sx you might be experiencing but don't know it - there is a lot more info in the link to help you identify other possible sx.

Once you figure out which antifungal is actually reducing y/f overgrowth, the GI binder will help reduce those sx.

Hope that's helpful -
p
LYME FORUM MODERATOR

Chronic late-stage lyme—likely infected in '98; Clinically dx Mar'14 w/ Babs, Fry Labs+ Bart-like, CDC+ Bb. First treated 4-5 viruses, GI/immune. Herbal antimicrobials in May; IV port-started Rocephin in Nov; added vancomycin Mar'16;
DETOX: Pinella/Burbur/Parsley/Milk thistle/Burdock/Red root; Samento/Banderol/Enula; JK/Turmeric; BFM-1; antifung; many supps; cholestyramine

1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 2438
   Posted 11/20/2017 4:01 PM (GMT -6)   
I don't have time for a long post (need to run!), but I just wanted to share that I battled systemic chronic yeast (non-candida strain, s. cerevisiae strain). Diflucan did nothing for my symptoms (I later learned it's not very effective for my strain - sigh).

BUT I went after the yeast in as many ways as I could. And when I knocked back the yeast (I still test positive but I'm confident I reduced my load because of my symptom improvements), I noticed several things.
* My kidney pain resolved. It use to make me sick for days (miserable). All kidney tests came back normal, and the doctors were clueless in helping me.
* My headaches went away. (I only get headaches nowadays from lack of sleep or perhaps trying a new herbal/supplement.)
* My menstrual migraines went away (these were new for me the past couple of years - never had them before).

I don't think most people would associated headaches and kidney pain with yeast issues, but for me, it definitely was. So, I share this with you in case your headaches/migraines are related to the yeast issues! It can and does happen! Such a strange symptom related to yeast!
Kid#1: Extremely sick for several years, very difficult to treat, but doing great now!
Kid#2: Still sick now despite being treated for years but doing better (not well yet).
Kid#3: Generally good but relapsing off/on.
Me: Adv Labs positive 2016 (suspected I passed to my kids)-not as sick as others, mostly battling fatigue and yeast issues (heart/kidney issues resolved)
Treating with herbals now.

Georgia Hunter
Veteran Member


Date Joined May 2012
Total Posts : 2116
   Posted 11/21/2017 12:10 AM (GMT -6)   
1000Daisies said...

I don't think most people would associated headaches and kidney pain with yeast issues, but for me, it definitely was. So, I share this with you in case your headaches/migraines are related to the yeast issues! It can and does happen! Such a strange symptom related to yeast!


You are correct. I would say many headaches are related to yeast issues. It may be Saccharomyces or Candida, but both can be problematic in people with headaches.

lymelearner
New Member


Date Joined Nov 2017
Total Posts : 7
   Posted 4/23/2018 12:32 PM (GMT -6)   
Sorry for the very late reply.
I've been meaning to reply for so long but I've been so overwhelmed and real life has been piling up on me without being able to really do much at all.

But I really wanted to give an update because
a) Pirouette - Your posts really helped me break out of a terrible situation with those migraines
b) I've read a lot on this forum that helped me become more informed, and maybe my story will help others.

What I have been doing since:
Unchanged Meds: I still take a whole load of supplements, al complex, samento, lb core protocol, hydrocortizone, valtrex
Med changes since that post: Started tindamax and did about 3 weeks of it with breaks in between, stopped using fluconazole, started questran (cholestramine), started using cbd oil, then stopped tindamax and started alinia

How my symptoms are doing and which meds are feel are responsible:
Migraines - Gone. I attribute questran to this. After stopping fluconazole for 5 days I felt them starting to come back, but on the 5th day I started to take questran and it helped keep everything from getting worse.
Chills - They came back pretty badly, but tindamax / alinia seemed to help with them. Previously I think bicillin was the biggest help with it, but it came back after being off bicillin for a few months. My practioner thought that it could be cyst form lyme that was causing this (maybe some coming out of cyst form when all looks clear and causing relapses). I'm much better (almost normal) with this now, though if I overexert myself it comes back.
Energy - This has been improving still, not a normal yet. Hydrocortizone was the biggest helper hear. I did the cortisol spit test and my practioner found out that I produce way too little cortisonal and thought my adrenals were exhausted. He told me to start with 1 pill in morning and work up to 4 till I feel an affect, and go back down if I feel too "coffee jittery". I got up to 4 and found I went from having about 5% of my normal energy to like 35%, which was amazing but felt a little coffee jittery and then went down 1 and still had an energy improvement. I still had this thing where I would easily crash and have to lie down and get exhausted though, but I think tindamax / alinia / cbd oil (one or more of those) has helped with that.
Sleep - I've needed 10-11 hours average most nights, but recently I've been able to sleep with 8.5 and feel well rested. I attribute this to either improving lyme condition, or possibly an increase in trazodone. I doubled my dose, and that really helps me sleep. It makes me feel dizzy if I wake up, but does a really good job of making me not thinkg about things endlessly in bed.
Brain fog / light / sound sensitivity - This has improved, but has up and down days. I attribute the improvement to questran / cbd oil. I read somewhere on healing well about someone who used cbd oil and it was a turning point for them and that inspired me, I wanted to try a high enough does to have an effect. I took 150 mg of it the first night and didn't notice anything for a couple hours after taking them and then went to bed. But I woke up with the worse brainfog / light / sound sensitivity I've ever had and it lasted all day and night. I was convinced that this isn't a "high" as I took cbd oil from hemp and didn't feel any immediate effect, and the effects were all worsening of my symptoms. I then reduced to 75 mg and still found a big herx the next day, and went down to 25mg and didn't feel a herx and stuck to that. I feel like that has been improving these symptoms and maybe other lyme symptoms as well. I now have upped cbd oil to 50mg and don't notice a herx from that, hoping that means there is less lyme to herx and want to slowly increase to 75 and up. Regarding questran - I started taking 1 dose per day, and it wasn't that hard for me to follow. I was told to take it at least 4 hours before meds/ 1 hours after meds. I then increased this to 2x per day as it seems this was helping.

Pirouette - You posts about cholestramine really helped me a lot as it pushed me to talk to my practioner about it. He actually brought it up before as a potential idea but mentioned it can be hard to time it with other things so he was waiting on it. After reading your post I wanted to do pure cholestramine to make sure I can tell if its working and have the best effect, but after he prescribed ti for me I found out the compounding pharmacy we use wanted to charge about 800$ for it, compared to about 10$ I would have to pay for questran, and we are so financially hurt from this treatment that we decided to first try questran. And we are glad we did because it definitely had a huge profitable effect at way more affordable a price.


I am starting to feel like if this continued for a month or two and isn't just a fluke up (within an up and down cycle) that I am getting really close to being able to return back to work. I haven't been able to work at all as a software development team lead, as the brain fog symptoms made me totally useless, the energy crashes and sleep schedule made me unstable and unable to work as a team and keep meeting appointments.

If anyone has any questions let me know and I will try to come back here and answer (though I apologize if takes me a while as I am still trying to catch up on a million medical bills / taxes / finances / my daughter / my wife, etc)

Post Edited (lymelearner) : 4/23/2018 12:36:25 PM (GMT-6)


WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1680
   Posted 4/23/2018 12:59 PM (GMT -6)   
lymelearner,

So glad you came back to post this detailed update. It's so helpful when others can learn from our experiences. We each have knowledge, experiences, and insight that others can glean from.

Great news you shared, too. So glad your migraines resolved. I have them occasionally and they are one of my most hated symptoms. I can't imagine having them constantly for long periods of time like some do. Makes me shudder to think of that kind of suffering. I sincerely hope you are well enough to return to work soon and continue to progress in your recovery.

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1680
   Posted 4/23/2018 1:01 PM (GMT -6)   
Oh, I meant to ask. Did you treat any coinfections or just Lyme? I ask because your initial symptoms made me think coinfections.

lymelearner
New Member


Date Joined Nov 2017
Total Posts : 7
   Posted 4/23/2018 1:08 PM (GMT -6)   
I never tested IGM positive for coinfections but had a litte IGG for babesia. But my coldness symptoms made me and my practioner think that it still could be babesia causing it, it could possibly just be a variety that isn't as common and the tests don't cover it. I didn't do a specific treatment that was only for babesia. But he mentioned that AL Complex, and LB Core buhner protocol, both help fight babesia as well as lyme.

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1680
   Posted 4/23/2018 2:14 PM (GMT -6)   
lymelearner said...
I never tested IGM positive for coinfections but had a litte IGG for babesia. But my coldness symptoms made me and my practioner think that it still could be babesia causing it, it could possibly just be a variety that isn't as common and the tests don't cover it. I didn't do a specific treatment that was only for babesia. But he mentioned that AL Complex, and LB Core buhner protocol, both help fight babesia as well as lyme.


I thought so. I would seriously recommend doing Buhner's herbal protocol for babesia if you're not treating it with antibiotics. Different people seem to respond better to different herbs for that one. Buhner seems to indicate that sida acuta is the best overall for the most people, though some respond more to crytolepis or artemesia. Bidens pilosa is also in the babesia protocol. Some do well with typical antiparasitics like Alinia or ivermectin. Just don't leave coinfections unaddressed.

lymelearner
New Member


Date Joined Nov 2017
Total Posts : 7
   Posted 4/23/2018 2:56 PM (GMT -6)   
WalkingsByFath - Ah forgot about Alinia being useful for babesia as well. I'm currently taking that and coldness has been getting better. I'm also noting down sida acuta, crytolepis, artemesia, and bidens pilosa as possible future treatments if this starts getting worse again.

I also forgot to mention that I got my first cold about 2 weeks ago. It started with a scratchy throat, led to coughing, sore throat, runny nose, stuffy nose, lots of mucus, and then went away.
I was really scared at the time, but then searched for "lyme disease first cold" and found lots of posts on healingwell with many people mentioning that their first cold was a turning point for them, and that getting cold symptoms is actually good because the cold doesn't cause the symptoms, your immune system causes the symptoms fighting the cold. So I'm hoping this means it's a turning point for my immune system. So far the last few days since the cold is gone have been some of my best days so I'm really hoping.
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