Cholestyramine and Migraines

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Veteran Member

Date Joined Jul 2017
Total Posts : 844
   Posted 6/19/2018 7:53 PM (GMT -6)   
Hello all!

I frequent the Lyme discussion board since I have Lyme. But, I also suffer from migraines with aura. And have since I was an early teen. I have been trying to put the big puzzle of me together ever since I became quite ill last year.... Bear with me...

I had my first migraine when I was 14 years old. Had the visual aura followed by a horrendous headache. I had quite a few in my early teens. Then they became much less frequently as I hit adulthood. I joined the Army and did not have 1 migraine the entire 5 years in. Then I got out, was searching for a job, and my gf (now wife) got pregnant. Bang, got a migraine. Another one followed a few months after. I figured they were triggered by stress.

Quite a few years of quiet followed that 2nd migraine. Then, about 2012, I got another one. Nothing particularly stressful was going on. And again about 4-5 months later I got another one. Only this time, the migraine was accompanied with a bit of confusion. During the aura, I could not decypher words. It felt like I was having a small stroke. But, as soon as the aura cleared, so did the confusion. Again, things were quiet for about a few years, then I started to get them in 2015. And they started coming one regularly. I learned to control the pain, nausea, and fatigue (to a degree) by taking 2 excedrin migraines at the onset of the aura, eating a meal, and drinking a lot of water.

So, I must of had about 5 within a year's time. Then I went camping late Spring of 2016. Got bit by a tick and developed the dreaded telltale bulls eye rash. I received 10 days of antibiotics and thought I was done with it. about a month after the antibiotics, I started getting migraines again. This time I was getting them a week or 2 apart. My vision started failing as well. My cognitive functions started failing me. And finally, in the Summer of 2017, my walking and balance took a hit. After doing research, I suspected that the antibiotics I took for Lyme did not do the trick. Went and saw a Lyme literate neurologist, and got tested. I was right. I had Lyme. And it was deep in me now.

The neurologist also tested me for a host of other things. I found out I have coinfections, I'm celiac, I have Epstein Barr, and I have a gene that makes it difficult for my body to rid itself of mold toxins.... Yay! I also had an MRI of my brain done. Well, about 9 nonspecific lesions showed up and one enhancing lesion located in my midbrain.

So, I started treating the Lyme and the migraines subsided. But at this same time I changed my diet and stayed very hydrated. So, I'm not really sure which stopped the migraines at that point. But, other than the migraines stopping, I got much worse on Lyme treatment. I was bedridden at one point. I researched that sometimes there are too many toxins for the body to handle during Lyme treatment and you need to take a break. So I did, and I started feeling better. This whole time I was doing a ton of research on my situation. I decided to get my house inspected for mold since I have the mold gene. And I'm glad I did. The HVAC guy found tons of it in my HVAC unit and in my crawlspace. I had the unit replaced and the crawlspace remediated.

I am currently seeing a biotoxin illness doctor who specializes in mold toxicity. My house is still showing unacceptable amounts of toxic mold. So, we have decided to pick up and move. We are still in the process of finding a clean house. So, until then, we are running air purifiers and I am sleeping in a tent in my back yard. My dr prescribed me a medicine called cholestyramine. It binds all the toxins in the lower intestine so they cannot be reabsorbed. The thing is, once you move toxins out of your bloodstream, that makes room for more toxins that are stored within your fatty tissue (brain, heart, etc....)to come out and play and they move all over the place reigniting massive inflammation.

So, I get 2 migraines in 3 days while taking cholestyramine. I forgot to mention that when I am super hydrated, I do not have migraines. What was happening, I believe, is that when I take my cholestyramine before bed, I am not drinking water and therefore my hydration level drops while I am sleeping and the cholestyramine must be binding something that my body needs in order to keep the migraines at bay.... maybe...

As long as I keep hydrated and skip the evening dose, I seem to be ok.

Now, all that to get to my main concern. I just wanted you all to get the full picture before asking this. Is it possible that it is the migraines that are causing the brain lesions, including the enhancing lesion in my midbrain.... If so, I am terrified to have anymore. I am scared that they are causing irreversible brain damage.

Forum Moderator

Date Joined Apr 2012
Total Posts : 7515
   Posted 6/21/2018 4:07 PM (GMT -6)   
Hoagie welcome to the forum.

The only thing I am sure of is that Lyme disease can cause liesions on the brain, although I do not know the details.

This is a discussion to need to have with EACH of your care givers.

You have a lot going on. Just the stress of you health situation could be bring on the migraines.

I wish you luck in finding the answer.

Moderator - Depression

"...when the gift of sight is cause enough for jubilation."
Billy Collins from the poem. HIGH

DX: reverse Trigeminal Neuralgia;Cluster headaches; Atypical face pain;Hemicrania Continua; raynauds;complex PTSD; recurring MDD,disassociative disorder;
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