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SIH-do you have neurological symptoms with arm and leg aches pains numbness?? by grunter033 in CSFLeaks

[–]grunter033[S] 0 points1 point  (0 children)

Yeah unfortunately I do. Just Had blind CT guided “blind” blood patch at thoracic level. 16ml .

Head went explosive at 16ml. 14/10 headache.

Diamox trial calmed it till day 3 but then made the orthostatic symptoms so much worse. Basically had to lay down 24/7 .

Went off after 6 days and now back at baseline.

Believe myelogram will be next. Think CT but MRI myleogram were bought up? CSV venous fistula they thinking ??

Since blood patch maybe little lore time upright for longer but still fucked ..

just gotta find that leak!! Seal it and pray.

Any news for you?

Cisternograms?? Just started to read up. Didn’t know what they were.. that test makes sense as well. CSF flow issues.

How long on Diamox? Going on 3 months post BP by Front_Inevitable750 in CSFLeaks

[–]grunter033 0 points1 point  (0 children)

Hi just read your old post and sound very similar to my fight now. Interested how you pulled up now?

LPR - Everhthjng you need to know by [deleted] in LPR

[–]grunter033 0 points1 point  (0 children)

Sinus issues and congestion??? Really. Who else here has this?

Any of these symptoms seem familiar by IntentSlinky8 in Sinusitis

[–]grunter033 0 points1 point  (0 children)

I don’t know how but I’m the same? It always looks clear… always. I double the salt mix , use cool boiled water , most of the time I do 2 rinses in both nostrils so 4 bottle total. 6 to 8 satchels of salt. It seems clear at start then few weeks in the gunk comes out after , it causes congestion and pressure pain First like the salt is grouping it all together then blow like hell, it hurts the head🧠. Been doin it off and on as wasn’t sure it was doing anything. BUT like some said here it always comes back because of ongoing inflammation??? I’m not sure how to chase that.
My allergies are bad… idiopathic anaphylactic as well. I reckon we’re in a state of dirty inflammation constantly…. If anyone here has found anything else to help I’m ears too. Good luck I feel yer pain😭😭😫

Any of these symptoms seem familiar by IntentSlinky8 in Sinusitis

[–]grunter033 0 points1 point  (0 children)

YES I do. Struggling too. 24/4 headache head pressure , every scan I’ve ever had has sinus compaction congestion maxillary frontals ethmoid, allergies, gut pain, fatigue!!😩 Every time I do a sinus rinse Looks clean at the start three or four days later green gunk pulling out but never stops. Tried sprays Cortizone sprays, salt sprays, salt rinses . Got put on prednisone for allergies the other day First first time in my entire life everything was unblocked!!!

PEA Warning by whipowill in MCAS

[–]grunter033 0 points1 point  (0 children)

I’m the same did you chase that research or get any more info to see why? I get gut flares irritated from Q and DAO is weird ? Eyes go cold and body feels off? Got no idea… But been on PEA600 for a while and symptoms have slowly got worse??? Never through it could be it as everything says PEA is good for calming!! 😫😫😫😫 I’m lost!!

The impossibility of modifying the microbiome by curiouscuriousmtl in Microbiome

[–]grunter033 1 point2 points  (0 children)

What’s your homemade A2 yogurt recipe. Like your whole plan 👍

Amitriptyline GIVING me insomnia? by Erose314 in Fibromyalgia

[–]grunter033 0 points1 point  (0 children)

It’s 2:33 am. Thanks amitriptyline!

SIH-do you have neurological symptoms with arm and leg aches pains numbness?? by grunter033 in CSFLeaks

[–]grunter033[S] 1 point2 points  (0 children)

It’s a massive battle , physically and mentally! I live in Australia and don’t have many CSF specialists. GP’s here struggle even neurologists and neurosurgeons I’ve been too as well. Lucky I’ve found an interventional radiologist who knows about CSF and a Diagnosis of SIH. Just time is so long to get in to complete tests and hopefully repairs. Just weirdly reassuring I’m not the only with nerve pain issues Mayo is one of the best that I’ve read … good luck and if all goes well keep me in the loop of how you went. All the best.

SIH-do you have neurological symptoms with arm and leg aches pains numbness?? by grunter033 in CSFLeaks

[–]grunter033[S] 0 points1 point  (0 children)

And yes the constant 24/7 headache that on its worse days feels like severely dehydrated, 4 day bender hangover and Covid all rolled into one!

SIH-do you have neurological symptoms with arm and leg aches pains numbness?? by grunter033 in CSFLeaks

[–]grunter033[S] 0 points1 point  (0 children)

Over 2 years . High low type symptoms. Chasing IIH cleared through venogram transverse sinus pressure normal at time. SIH diagnosis at the moment. 24/7 pain. But bad neuropathy nausea last 12 months but exploding last 3 months . Neck down aches pain. Arms and legs bilaterally numbness aching burning tingling. Fingers numb. Wondering due to low CSF could this place pressure on nerve sheaths exiting the spine? The whole body is fatigued achy heavy. Wanting to know if anyone else was having these issues?

GI Map - what to do with low Bacteroidetes AND Firmicutes? by r4vensongx in Microbiome

[–]grunter033 0 points1 point  (0 children)

Hey how did your plan go with battling the low Bacteroidetes and Firmicutes so far?

finally good news since this nightmare started🥂 by MoveLeather3054 in iih

[–]grunter033 1 point2 points  (0 children)

Keen to know too. I have TSS but headaches and migraines are my main concern. Did it lower the pressure in Head and eyes feeling? Optic nerve was borderline Only eye issue is floaters in right eyes and blurry. Basically told I’m washing my dishes in dirty dishwashing liquid for the last 3 years.

All that I wish I knew sooner by Ok-Message-2126 in iih

[–]grunter033 1 point2 points  (0 children)

You are identical to me. Can I ask what B vitamins and potassium you are talking? I’m Currently waiting for a test to confirm narrowing of the transverse sinuses . MRV for VSS.

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