March 25, 2012 at 1:48 am #144
Hi, my name is Bee, I’m 41 and have EDS Hypermobility type and lots of associated problems. It has become fairly clear this week that I have a CSF leak and that can be leading to cerebral hypotension. Great article on it actually says EDS being one of the underlying conditions that can allow this condition to occur. I’m wondering if the cerebral hypotension from dural tears/weakness from underlying collagen defect isn’t responsible for some others problems too. One strange thing I’ve had since 24 is breast milk production (not in association with pregnancy & no pituitary tumor found). I read vis following the references in this paper that there can be a pseudo pituitry tumor syndrome with cerebral hypotension. Brain normally floating in CSF, fall in pressure, brain falls downwards towards brainstem and can cause pituitary dysfunction. Really would like to discuss this idea as an altenative to the high pressure/outlet block route, I think both mechanisms have very sound biomechanical basis in light of the underlying collagen defect. I know it’s very complex. But really want to put it out there & hear what you lot think??? All the very best. Bee
JAMA. 2006;295(19):2286-2296. doi: 10.1001/jama.295.19.2286
Spontaneous Spinal Cerebrospinal Fluid Leaks and Intracranial Hypotension
Wouter I. Schievink, MD
breast milk production 1993 case report Primary Low Cerebrospinal Fluid PressureSyndrome as cause of Galactorrea
Michiya Yamamoto, Tadashi Suehiro, Hideshi Nakata, Tatsuya Nishioka, HiroyukMarch 26, 2012 at 12:52 pm #1909ourfullhouseParticipant
Very interesting. I don’t seem to have low CSF pressure, because Diamox helps my symptoms, but find the connection to making breast milk fascinating! I wonder if the same principal in low CSF causing the brain to “droop” and therefore put pressure where it shouldn’t, would be the same as high CSF also putting pressure where it shouldn’t, because for me, ever since I had my first baby 26 almost 27 years ago, after I wean the baby from nursing, even YEARS later(even 3 years later!), I still have milk (very inconvenient when having a mammogram done!). My doctors have chased this around for years, and my prolactin levels are usually within normal limits (though I have seen my labs and a few times it was a little high, when I wasn’t nursing or even lower than it should be during pregnancy. Not sure what that means). They also suspected a pituitary tumor, etc. But, MRI’s and tests all said that wasn’t it. And, I just realized after reading your post that since I started taking Diamox, I am finally truly dried up for the first time in 26+ years!
Sorry I can’t address the low pressure side of this, but I think you are onto something here for sure! =)
~jerriMarch 26, 2012 at 1:39 pm #1910
That’s exactly what I’m suggesting, that CSF leak (and cerebral hypotension) and hydrocephalus both result in compression of the brain (particularly the brainstem) and whilst the mechanism is very different, there are clear ways in which EDS would prepisdpose us to both conditions. There is are conditions pituitary pseudotumor and pesudo cerebi where compression can lead to tumour like syndromes. I have occassional spikes in prolactin but usually normal but I still produce breast milk (since 24, didn’t have child til 36). On another endocrine front, I have thyroid nodules and cysts on ovaries… I’m really curious about the effect of brain compression and endocrine dysfunction… I wonder about lots of things, like if our brains are perceiving raised pressure (even in the case of cerebral hypotension and brain sagging into spine) then things like fluid dumping and to reduce ICP could be a possibility? Could the fevers and dysautonomia/episodes of strange neurological symptoms and hypoglycaemia I get be part of the picture of CNS response to CSF leak.
I also remeber reading about the hypothalamic pituitary axis and CFS/ME OOH-NOOH cycle… could it be a there is a physical route to fatigue via brain compression??
I have “UBO” (Unifentified Bright Objects) on T2 MRI scans. I wonder how common this is in people with EDS and neuro/endocrine problems. Bee
Another link on cerebral HYPOtension
CSF Leaks and Spontaneous Intracranial Hypotension | Serendip’s Exchange
Spontaneous Intracranial Hypotension (SIH) is a condition where a patient gets …See MoreMarch 26, 2012 at 6:47 pm #1911
This is very tricky. We are prone to CSF leaks (we have weak dura). I would have to say that most of these leaks are secondary to either trauma or high intracranial pressure.
Now, once you have a good leak, you could become hypotensive. Making it even more complicated, the symptoms of cranial nerve compression are identical in both cases.
IMHO, the best way to tell the difference is by playing detective. First, on your MRI, do you see a partially empty sella (or empty sella)? That won’t occur if your pressure is low. Now look at your other symptoms. High intracranial pressure will usually result in dizziness, vertigo, motion sickness, you can sometimes see and even HEAR your pulse when the pressure is high, and you’ll experience a worsening of symptoms with valsalva (straining). If you blow up a balloon and things get much worse, I would think high pressure. The type of headache that occurs with high pressure is also a bit different. It usually occurs at the base of the skull, and radiates down your neck to the tops of your shoulders. Do you have that type of headache? That is almost ALWAYS due to high pressure. A high pressure headache is the same (or even better) when you get up and move around. If your pressure is low and you become vertical, you will wish you were dead. Those of us who developed CSF leaks after LP’s will attest to that. If all else fails, I’d ask your doctor about a trial with Diamox. Usually around 250mg at night time will give you incredible relief by morning. And if you get up and your head is killing you? Drink lots of fluid with salt and glucose and lie back down. In 3-4 hours you should be fine.
Oh, the endocrinology gone wild? BEEN THERE! Do you have Part 2 of The Driscoll Theory (click on it on the home page. You can download it directly to your computer). Most of us still have wack hormones, even with our pressures lowered. But CCSVI putting pressure on the vagus nerve can cause the hypothalamus/pituitary/adrenals to go funky. Then if you throw in our inflammatory cytokines and mast cells, our endocrinology can go all over the place. At first, I was hoping it was all high pressure causing the hormone fluctuations, but I’m leaning more toward the vagus nerve causing most of our hormonal issues (although after starting Diamox, my periods returned. Mixed blessing, there!)April 2, 2012 at 10:31 am #1930
Please check out my latest video about external communicating hydrocephalus. It goes into a bit more detail about this, my friend. I have a small head, as does my mom and sister. It doesn’t mean we’re out of the woods for hydrocephalus, dog-gone it!
Big hug…April 3, 2012 at 7:49 pm #1936
Thanks so much for your replies,
Firstly, I get a couple of types of headaches, the ones that come on overnight, go through periods when I wake at 2am with terrible headaches and have to get up and sit up till (I thought the codeine/paracetamol worked… may be it’s just being up that helps???)
No empty stella, but do remember note on 1st MRI in 97 that said I had UBO in hypothalamus, one side. No evidence of compression, but boy feels like it, I get the pulsing tinnitus, dizziness, nausea/gastroparesis.
Then I get these terrible migraine headache with projectile vomiting and visual disturbance/photo and phono phobia. These are behind eyes, usually R eye. These are defined episodes (can last days) and have to lie down, can’t stand with these… so could this be the hypotensive episodes? Have had LP in “status migraine” for a week and in hospital when told pressures not elevated, in fact, told they were “good, nice and low” …
I do have neck pain/stiffness/numb patch between my shoulders at base of neck (numb to light pressure, still feel deep pain but not touch), hands go numb, altered taste, feeling of huge lump on L of throat and very tired of it all. Most very grateful of your discussion. I really think there may be something in the idea of there being hyper and hypo tension alternating, sure makes sense, in a strange way, if I have leaks that serve to reduce the pressure, this may account for the lack of compressive changes on MRI, bloody hard to prove, but if I went the route of getting blood patches for CSF leaks, then I wonder if the ICP would go up & I would get the typical radiology findings start to show up??? SO very, very complex, but I read through the raised ICP symptoms and can totally relate. The neuro/endocrine would help explain a lot too. Thanks lots, Bee xx (:April 6, 2012 at 7:14 pm #1951
Bee, Did you see my video on External communicating hydrocephalus? Humbly, It sounds like an overnight trial with Diamox would be worth considering with your doctors. Getting up and even moving around can help us drain CSF. It will also help drain venous blood, because so many of us have stenosed internal jugular veins. When we’re vertical, we tend to drain more out of our vertebral veins instead (take a peek at Part 2 of The Driscoll Theory, OK?
Let us know!
🙂April 6, 2012 at 7:56 pm #1952
Hi and I have watched in past but have just had serious ADR to Spiriva (for chronic bronchitis & ??tracheomalacia). I’ve had tetany contractures of hands and feet, cramps up the fronts of my shins and calf muscles, arm pain +++ arrhythmias +++ and some other bizzare stuff that I now discover 0.01% of pepople taking have reported such things, but so unusual it’s not mentioned in the literature. A quick search and low and behold… there is lots of discussion on severe leg cramps and front of leg pains/bone pain etc. I had warned my husband that he might need to call an ambulance. Paradoxically it had made my chest worse after a couple of days so I’m on lots of prednisolone and I’m guessing you all know what that’s like.
So… yes, I defiantly will be reading when I feel able to take on board whats staring me in the face!
Just curious, this spiriva reaction would suggest that I’m hypersensitive to anticholinergic medications… could this be why I have such dreadful trouble with anesthetics??? Any one else suspect the have ADRs to things like atropine? BeeApril 6, 2012 at 10:02 pm #1959ourfullhouseParticipant
So sorry you are going through such a hard time! Argh! I too get strange reactions to many meds, not anaphylaxis reactions, but cannot tolerate type of reactions. When I have to go into the hospital and give them a paper list of the ones they CANNOT give me (and I leave off most of the failed meds that I don’t think they would be giving me anyway!) they look at me like I’m crazy. **sigh** I think the weirdest one for me and hardest to explain, or maybe it is to get medical people to understand, is that I cannot have IV Benedryl, as it makes me pass out. I can take it orally, no problem. But put it in an IV (usually because I’m reacting to some pain med they have tried… I react to almost all that are used in hospitals) and I’m gone. I had a similar experience with being on a Beta Blocker (only a few days of that!), one of the misguided attempts by my cardiologist to help my POTS (before I found prettyill and Diamox!).
I know this is probably way too simple, but have you had your potassium levels checked? When mine is low (and the Diamox seems to be making mine low, rats) I get terrible lower leg pains similar to what you are describing and tachycardia. Just wondering if somehow your chemistry has gotten off kilter, maybe from this reaction to this medication, etc. Probably already been looked at, but just in case it hasn’t seems like an easy thing to check and easy to treat. =)April 6, 2012 at 11:00 pm #1962
Yep, Potassium checked, routine U & Es showed low Ca(corrected calcium which is more accurate for those of us in chronic disease states/post thyroid surgery) and nil else, I was on 600mg Ca and doubled it and the Mg to two under drs advice to nil effect. Just spoke to Resp physician who said symbicort & spiriva can cause the leg pains (albeit unusual, but got that one down pat!)I have POTS anyway and ECG done shortly before the 24hr dose due, and getting worst arrhythmias at night.
So complex, so very, very complex. Thanks for the reply, I really appreciate any ideas. Bee
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