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Dizziness
A MyFibroTeam Member asked a question 💭

One of the main symptoms I experience for 9 years (after sudden onset) are strange sensations on upper sides & top of head (brain) that triggers dizziness/ disorientation & eventually headaches- especially to back of neck. Of course MRI & labs normal. Anyone experienced this?

posted March 20, 2023
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A MyFibroTeam Member

Thanks so much for your feedback, Javier! It's very interesting you mentioned FMT. I did it 10 years ago and for 6 months had full remission of all symptoms. I felt like my personality had been restored. Mood was great, I could easily cope with stress, slept well. I was also seeking out social connections, playing music. I was putting on healthy weight.

Maybe gains were lost because I started taking probiotics and prebiotics, or because of neck and head injuries that affect my vagus nerve? Maybe old biofilms in my gut allowed pathogens to take over again and crowd out the healthy flora. I'm a big fan of Borody's work. All my health issues got started after taking Cipro antibiotics.

But I think it’s most likely my microbiome regressed because of motility issues and SIBO. I have Ehlers Danlos and my gut wall is weak. When I wear an abdominal binder this helps with motility, so SIBO improves.

Maybe you have EDS and don't know it? 1 in 2000 of us do. But most of us with chronic illness have some degree of deconditioning, which can affect the abs, pelvic floor, etc.

It seems like SIBO specialists tend to ignore biomechanical and neurological issues that impair transit.

Just as an experiment, you could try a binder (it’s like a wrap for people with a hernia) to see if that helps. I find it reduces head pressure, and then my vagus nerve works better, cogintion is improved, etc.

Perhaps the abdominal binder even improves gut flora, because when transit is slow the pathogens tend to take over.

posted April 7, 2023 (edited)
A MyFibroTeam Member

Chris
Thank you for providing an abundance of great information!
Like you, when the SIBO/ IBS improves, so does every other symptom- headache, body pain, & fatigue. My go to has been Xifaxan & Cholestryamine powder. I also did a fecal transplant in Montefiore Hospital NY when symptoms were severe. It helped a bit.
My extensive Fibro issues started after taking antidepressant Mitrazapine for lower bowel pain. I got severe headaches & strange sensations- but my brain never reset from those symptoms.
I've tried a few of the supplements you mentioned but not extensively. Ill definitely look more into this. I'm especially intrigued by the magnesium.
There have been many advances in IBS/ SIBO.
When you get a chance, read up on Professor Thomas Borody of CDD Australia & his work & Dr. Mark Pimental SIBO specialist. Hope you get some good news from the specialist. Wishing you all the best Chris. Blessings

posted April 2, 2023
A MyFibroTeam Member

Javier, I read an article a long time ago, I think it was Chris Kresser, who said intra-abdominal pressure can cause intracranial pressure to rise, and this makes sense to me, because I never noticed pressure in my head before SIBO and the general bloating it causes.

I'm going to see a motility specialist in a few weeks and discuss all this, but meanwhile I'm covering all the nutritional bases.

In addition to liposomal C, vitamin D3, trace minerals in my water, and probiotics, I make sure I get my b-vitamins, especially thiamine because it's important for brain stem autonomic function. Thiamine deficiency is a lot more common than most doctors think, and it's hard to test for, you can look "normal" in blood work but need more to function properly. And thiamine is cheap and safe to take, whatever we don't use is excreted.

I also make sure I get 3.5 grams of potassium daily. As much as possible via diet, but on days I don't eat much I make up the difference with a supplement (potassium orotate is least irritating to my gut) and make sure I take that with plenty of food, to maximize absorption. I heard potassium is best taken with some sort of carbohydrate, too.

Another factor is getting enough salt. I now aim for at least 1 tsp a day, because it helps nerve function and reduces "fight or flight" hormones, it helps adrenal function, I get better rest with salt on board. Not too much, just enough.

Oh, and magnesium is a biggie. I need 800 mg a day and glycinate form works best for me. Bottom line is most people with fibromyalgia get better when SIBO improves but I feel like my best shot at that is optimizing nutrition, getting good rest, and doing things like measured breathing, to boost signal in my vagus nerve. Hopefully this all reduces the head pressure and that helps reduce pain.

Keep me posted on how you're doing. ;-)

posted April 2, 2023 (edited)
A MyFibroTeam Member

Yes, especially when I move my neck in extension or flexion. I attribute it to cervical injuries.

posted March 20, 2023
A MyFibroTeam Member

Sounds like partial brain fog also get your ears checked. I just did and I have permanent hearing loss in the cochlea. Trying to decide which hearing aid now

posted April 30, 2023

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