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AngieP

Head Pressure - Cfs Leak?

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Hi there,

One of my worsening symptoms is head pressure and a very stiff neck. In addition to the discomfort it is making me feel anxious as I don't understand what is going on.

I have had intense head and facial pressure before and it has dissipated after a week or so - my head didn't actually explode :)

I'm just wondering if I should speak to my neurologist about a possible CFS leak?

When I was last in hospital they did suspect EDS Type 3 but I ended up being classified as only mildly hyper mobile (bendy thumbs, tongue that can touch my nose etc.) I also bruise very easily, have scoliosis and was diagnosed with POTS.

Also is this head pressure safe to live with? Any reassurance you could offer about this symptom would be very much appreciated - i.e. it's uncomfortable and at times painful but won't kill you.

I should add that I have been experiencing hearing trouble when I get this pressure - some sounds get distorted and very high pitched in my left ear. For the last three days I've also had a fluttering sensation on the right side of my head.

Thank you,

Angie

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I have this squeezing pressure that no doctors have an answer for. It's constant and never goes away. I want to go to the hospital but I've been there 2 times already and have been sent home. The most recent time they did a lumbar puncture but said my pressure was fine. No doctors I have been to have been able to figure my head pressure out. If you get yours figured out, please let me know and maybe my doctor can figure out if that's my problem as well.

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Hi Evergreen,

If I get any answers I promise to let you know.

I'm seeing my neurologist on Feb 9th so I will discuss the symptom with her.

Sorry to hear you're going through this as well - it's very unpleasant.

Take care,

Angie

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I'm sorry you have to go through this as well. If I figure anything out I promise to let you know too. Good luck at your neurologist appointment. I hope she can help you!

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Hi Angie,

You are clearly worried about this, so it appears to be something new.

My thought is waiting over a month to check this out is too long...particularly because you are having hearing disturbances. Try to see if your neurologist can see you (much) sooner. Minimally, try to see if you can talk on the phone.

Do you have a GP you like? Perhaps this person can do a basic assessment soon and run interference for you with the neuro.

Best,

Sylvie

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A doctor recommended me over to a pain specialist. I thought, great, someone will know what to do with the pain. Then I looked at the form. It doesn't talk about pain management. It mentioned CSF leaks. So off to Google and I came across a slightly hard to find URL from a Marfan conference with Dr. Carroll as a speaker. He has come to theorize POTS + headache + hypermobility = CSF leak.

I had earlier figured out CSF was likely what was happening to me but had no idea it could be a contributor to all the more odder ANS dysfunction I was having, such as wild swings in BP. I am awaiting my visit to him, unfortunately having to pay out of pocket. Perhaps he can give advice about a blood patch. He says one of his first patients returned to mountain biking. That sounds sublime.

Note: So many doctors do not know how to diagnosis a heritable connective tissue disorder, especially hypermobility. I have gone from place to place, including doctors with EDS patients in their practice and a geneticist. I can read and follow the Brighton criteria, why on earth is every other doctor coming up with their own set of rules? Plus there is so much more new data coming in...the Beighton Score was not all inclusive in its design - its a starting point. People age, hypermobile people suffer injuries, osteroarthrtitis, muscle tightness...not all of us have skin that is elastic, or elastic in the areas doctors want to evaluate...it is a spectrum of a syndrome and especially individualized. It seems now that people are starting to discover the clusters of symptoms. If doctors seem wary to look into EDS, as them to look into heritable connective tissue disorder, or joint hypermobility syndrome.

In my persona experience of trying to get the CSF leak looked at ahead of the genetic visit, I got a lot of blank stares. It will be important to demonstrate your relationship with weak connective tissue first (at least in comparison to the general population), since almost all spontaneous CSF leaks are the result a connective tissue disorder (as related to by an expert online lecture).

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