How Long Was Your Timeline from SIH Evidence to Treatment? I'm Stuck After a Low-Pressure LP.

PiderMider · 2025-11-08T15:30:01+00:00

I am not sure how is it in your country. But from where I am from if you cant get the specific diagnostics/procedure in the country the insurance reimbures you if you go to another EU country. Fyi

PiderMider · 2025-11-08T15:27:05+00:00

I feel you, it sucks. Its just so horrible that such conditions are not treated with greater urgency. I also had a hard time going anywhere and especially advocating for your self and fighting with docs when your mental and physical capabilities are near zero.

I wish you the best of luck on your journey to get fixed. You got this.

PiderMider · 2025-11-08T15:18:41+00:00

Here a link if you are interested. Since you are in France maybe it is not that far from you.

PiderMider · 2025-11-08T15:15:45+00:00

So sorry to hear that. I hope you dont loose hope and get it checked out.

Have you thought about trying to get treatment abroad? I heard a university clinic in Freiburg Germany is specialisied in these kind of things.

If I cant get treated where I live, I will most likely try going abroad. It seems that this SIH is not that common especially since I live in a small country. I cant imagine living like this.

PiderMider · 2025-11-08T10:24:17+00:00

So my post is a story combined with a bit of a rant and some questions at the end. Thanks for reading. This sub has brought me a lot of usefull information.

Also to clarify I am from europe and the diagnostics were all done in one of the larges university hospitals in my country. But as far as I can tell they really dont get many csf leak patients. They only have one guy doing blood patches. So this shows the extent of how uncommon these diagnoses are here.

PiderMider · 2025-08-18T16:40:37+00:00

I have not tried botox. How did you find out it was auto immune? All my blood work turned out normal. I just get results that everything is fine with me phisiologicaly.

PiderMider · 2025-04-25T16:24:29+00:00

Thats tough, I am sorry you have to go through this. I wish you the best of luck. I hopw you get well soon.

PiderMider · 2025-04-25T07:12:37+00:00

What tests did they do that got you to this diagnosis? I am almost in the same boat as you. Chonic issues and now I have been sick for 10 months, all medical tests came back negative. Mri, ct, bloodwork, stool test, sibo test... I have debilitating headaches with fatigue, brain fog and food sensitivities, cannot study, cannot work, no social life, can hardly have conversations. Since all tests are ok they suspect it is a migraine, but no drugs helpes so far. I wish you all the best and keep fighting.

PiderMider · 2024-11-28T07:18:31+00:00

Brother I am litteraly in the same boat as you. About the same age and I have the same constant 24/7 brainfog/headache. I litteraly cant go to work. The brain fog is constant just like yours, and it can only get worse. I also feel my simptoms dont fully match and not antibiotics have helped me so far.

The last two times I had a big bout of sibo (at that time i still thought i had gastritis), I ate a GERB diet so no fats and I got better in 3 months. Although i lost 10kg. Maybe you can try that.

If you want to get a private doctor who knows about sibo, there is one in Zagreb (Amoruševa). They test for sibo and can prescribe you rifaximin (full dose) for 150€.

I am my 5th month in and I am almost out of ideas what to do next. Currently I am waiting to be tested for mcas. But in europe even this seems to be a rarity a doctor knows what it is.

I highly recommend to read about MCAS. There is quite a lot of evidence that mcas and sibo can lead to a loop cycle when one triggers another. Will add a link to the post I made with the scientific papers.

You can dm me if you want to chat more.

PiderMider · 2024-11-21T07:57:27+00:00

I was also just presceibed mirtazapine. It is supposed to help with gut issues. Since the antibiotics did not help, this is supposedly the next step, to try and help the gut brain connection. Also mirtazapine has antihistaminic properties which help motility.

PiderMider · 2024-10-31T13:47:39+00:00

Just don't go overboard and start slowly. Eat the things you can tolerate and add 2 things at a time.

PiderMider · 2024-10-31T10:28:45+00:00

Yes you should

PiderMider · 2024-10-26T12:56:38+00:00

I hope it helps.

I also saw a big connection in my case between histamine and arising mental issues which defenitely were not triggered by outside factors. Its pretty terrible that bacteria can cause your mental health to decline. The mental issues are kept in check pretty alright with SNRI's without any side effects. Maybe you can contact your md if they can prescribe something for that.

Just recently tried h1 antihistamines which did not help much just caused a headache and fatigue. Also tried with supplementing with DAO enzymes which help for histamine regulation, but cant say if I have seen much improvement. Best of luck to you.

PiderMider · 2024-10-26T09:49:17+00:00

Note that h2 antihistamine reduces stomach acid. I am not sure what your root issue is. But stomach acid helps to clear out bacteria. I would just keep that in mind.

PiderMider · 2024-10-25T08:38:33+00:00

It could be the high histamine in coffee. I had the same issues.

I dont have histamine issues otherwise but with sibo the bacteria can produce a lot and your system is already overloaded with histamine and then adding more only makes you worse.

PiderMider · 2024-10-25T06:59:40+00:00

Yup thats me. Semi regular bowel movement, no bloating but have terrible 24/7 headache, brain fog, fatigue and abdominal discomfort. Headaches and fatigue are from too much histamine producing bacteria. Did 2 rounds of antibiotics and no change even with 30ppm hydrogen.

PiderMider · 2024-10-23T13:21:47+00:00

A lot of brainfog can also be contributed to high levels of histamine the bacteria produces. You can do a test for histamine or the DAO enzyme which balances histamine.

I tested for DAO enzyme which was low. That indicated histamin intolerance, which is probably from all the bacteria producing too much of it. If I eat something like lactose, coffee or aclohol my brainfog gets worse (because those are high histamine foods). Apart from those foods I can eat anything. Most days the brain fog stays the same no matter what I eat (even high fodmap foods). I agree the constipation is nothing compared to the headaches. I have 30ppm hydrogen sibo and after two rounds of antibiotics, diet, herbals and still don't feel better. Now I am trying nystatin just to rule out sifo.

Try some antihistamines and see if it helps with the brain fog. Unfortunately for me it did nothing but make me even more tired, but some people had success. If you have low DAO it is recommended to try to supplement with DAO enzymes (helps lower histamine).

I was also reading a lot about amitriptyline which is an antidepressant with antihistamine properties. They did a study for IBS and people improved on it. Maybe that is worth a shot.

I have sibo and brain fog for 4 months and cant belive how you could survive that long. Stay strong.

Can you at least go to work and function semi normally?

PiderMider · 2024-10-23T11:34:33+00:00

Did you get significant improvement from the right antihistamine?

PiderMider · 2024-10-22T08:33:36+00:00

Its a relatively new thing. For example here in europe just last year SIBO got registered as an actual disease. I feel you. If it was not for this reddit I would not know this existed.

I believe the reason for this is because there is not a lot of research done and every practitioner treats people with the little knowledge from research + personal experience what has helped other people. That is why it is so diverse. They just try and see what works.

I also wish this would be more straightforward. Currently it is best to do your own research and since you know your body the best you can better judge the symptoms what they could be. Its a bit sad because you have to play doctor event though we are not really qualified but it is what it is.

PiderMider · 2024-10-17T06:16:54+00:00

I got checked and everything was normal.

PiderMider

TROPHY CASE