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December 21, 2016 at 6:22 pm in reply to: Bisoprolol caused me partial hearing loss and went bad for my Vasco dilation #6055BarbaraParticipant
Hi, just a quick reply, please see my earlier post:-
http://prettyill.com/forums/viewthread/865/#4084
others are talking about this there.
B.BarbaraParticipantI attach an annotated shot of your MRI. The left shot has something that I haven’t noticed before, is it a vessel or what, I don’t know. In the right shot, the ‘sagittal’ one, I’ve seen the abnormal features of your MRI before, most of them are shown in Dr Diana’s ‘The Driscoll Theory’ and are fairly common amongst those who suffer similar symptoms to yourself and post on this website.
Basically there’s excess CSF fluid in your skull. It could be caused by your low-lying cerebellar tonsils acting as a ‘bung’. Warning – do not let them do a lumbar puncture to check this, as this can make things much worse and give a false-negative result. If they want to check it, tell them to use a non-invasive method (they do exist!) Many of us are on Diamox to reduce the pressure this extra CSF exerts on the soft tissues. It compresses other structures, like the pituitary, leading to reduced function, or malfunction.
We can all empathise with your suffering and can share what we have found helps. I have the aching body, where the pain get’s worse the longer I stand too, so basically your body’s telling you not to remain standing too long.
I have had to find easier ways of doing my daily tasks, some people refer to it as ‘working smarter’. I have several other posts you might find useful if I get time I’ll sort out the links, if not just do a search on any terms in search box above.
November 14, 2016 at 5:02 pm in reply to: Does anyone else have these side-effects with Diamox #6042BarbaraParticipantHi Bea, well if you are certain you measured it incorrectly, then I can understand that because I’ve had collars the wrong size but, don’t just assume you measured incorrectly because it feels weird, I tell you, the collar feels awful to start with because you’re putting your head in a position it doesn’t normally go on it’s own – but it’s much better for your head (and your whole body!) to be in this new position, no matter how trussed up it feels, you have to persevere to get results. That’s why many of us have all these symptoms in the first place, because our heads are held in the wrong place. I also recall the Philadelphia collar making my skin sore very quickly initially because they issued it without collar liners – these are essential for comfort.
As for the Diamox, I don’t recall clearly but I think it was 125mg three times daily but we all seem to tolerate it differently, so it’s just a case of trial and error. I’d always suggest starting at a low dose.
BarbaraParticipantYes it is.
BarbaraParticipantyes, I’ve been looking into the connection this year.
November 12, 2016 at 2:39 am in reply to: Does anyone else have these side-effects with Diamox #6037BarbaraParticipantHi Bea,
I used to get the tingling in fingers with Diamox but I just had to cut the dose down. With regard to the head neck and shoulder pain, I found that the Philadelphia collar got rid of this altogether for me.BarbaraParticipantJust a quick response, I think you are right, you have very low-lying cerebellar tonsils (lowest part of hind brain) that are almost protruding through the foramen magnum (hole in the bottom of skull), sometimes referred to as ‘Chiari 0’. You also have a retroflexed odontoid (a backwards facing top of axis bone, the peg-like C2 vertebra bone). Either of these two elements can interfere with the normal flow of cerebro-spinal fluid, so the combination of these two elements, gives you a double whammy so to speak. If you are unfortunate enough to have EDS (or have suffered a head and neck injury which was bad enough to have torn the ligaments) this can cause instability around the cranio-cervical junction, giving you another contributing factor to the restriction of cerebro spinal fluid.
BarbaraParticipantNo probs.
In the meantime, it’s important to eat, drink or take vitamin C regularly throughout the daytime to help form good collagen.It’s also important for you to observe the following:-
Forget working with the body bent forwards, or with your head down (in flexion) find another way;
Help your head to stay as balanced on the body as possible (sit up straight – no slouching!);
Look at ways of doing your tasks sitting down, wherever possible (this puts head less into ‘flexion’);
Sit opposite the person you are speaking to always, never keep your head/neck at an angle;
Unstable Cranio-cervical joints need support – wear a Philadelphia (or similar) collar;
Your computer screen & your work need to be elevated, so you are looking straight forwards and not hanging head in flexion;BarbaraParticipantHere’s a bit more info:-
http://prettyill.com/forums/viewthread/712/P15/#4115Further info on a Short clivus can be found in the following thread
http://prettyill.com/forums/viewthread/712/P15/#4079For those interested in the Bolognese/Milhorat method I mentioned, here’s the paper:
BarbaraParticipantDon’t have time to look in detail but one or two things spring to mind. You have a short clivus, that is the bone, to the front of the opening at the bottom of your skull, it’s an anatomical variant. I have it and it didn’t cause me any problems what-so-ever until I suffered a head and neck injury, which caused cranio-cervical instability – then it was a whole different ball-game, with symptoms similar to yours. Have you had such an injury ?
Do your symptoms worsen with your head in flexion ?You also have a loss of lordosis to the upper cervical vertebrae, so your neck has lost it’s ‘C’ curvature. It would seem that your Atlas (C1 vertebra) is forwards and the posterior arch of it encroaches into the spinal canal. I’d perhaps ask them to check for Cranio-cervical instability, using the Milhorat, Bolognese, Nishikawa, Francomano method, publicised Dec 2007.
October 16, 2016 at 2:20 pm in reply to: Desperately searching for answers and so very scared :( #6028BarbaraParticipantQuick reply, I am so sorry to hear of your suffering, it couldn’t be worse timing could it. Yes it does sound like POTS. With regards to Magnesium, take Epsom Salt baths instead and, equally as important, remember to take a daily multi-vitamin and mineral, try not to ‘hit and miss’ with taking it, as it really does help. Even if your diet is great, your absorption rate might not be so, better to have the supplement than leave your body struggling to cope.
Adequate nutrition is important and cannot be neglected, if you are to remain strong, so if you’re having food issues I would attempt to eat ‘little and often’, as is generally advised if you do have POTS.
I also know that dehydration can be an issue, which can affect you ‘big time’, so you need to not only make sure you drink the recommended daily fluids but also that you intake adequate salt, so that the fluids you drink are retained.
BarbaraParticipantI’ve taken the relevant section of your neck image, and placed it next to your head image, to illustrate what I’m suspicious of with the C1 and C2 vertebrae. I had to enlarge the neck one by 10% to try and get them both similar sizes. The neck one is still smaller but even then you can see that the gap is bigger.
BarbaraParticipantHi,
Just quickly looked, as I don’t have much free time these days (who does!) On the neck one taken recently, I can see one or two things that are probably contributing to your symptoms
1. Low-lying cerebellar tonsils (sometimes termed Chiari 0)
2. Loss of ‘lordosis’ of upper cervical spine (loss of natural C shape)
3. Signal difference on spinal cord between C5 and C6 (possible cervical disk issue)
Also I am suspicious that the distance between C1 and C2 has widened since your fall 7 years ago, so there’s possibly some instability there.Check what position your head is in when you experience the tingling, If it’s when your chin is down (head in flexion), there’s probably a need for a Philadelphia collar (NOT a soft collar). I would also suggest a good multivitamin (including all the B vits to help with your chronic fatigue and to boost your immune system) and additionally some form of Vit C regularly through the day to help repair weak tissue.
Hope some of this helps.
BarbaraParticipantWell high intra-cranial pressure (ICP), in my opinion, can promote either tachycardia or higher blood pressure, as the body desperately tries to deliver sufficient oxygen to the brain, against this raised ICP.
For migraine, if by chance you are suffering from it, you ought to look at the ‘magnesium deficiency’ connection. In fact, in decades past, they used to give magnesium to lower high ICP (the cheap solution!)
BarbaraParticipantMy experience of wearing a soft cervical collar was that it worsened my symptoms, as my head/neck junction wasn’t supported correctly. The Philadelphia collar however did the trick, as it kept my head and neck in better relationship to each other, allowing easier cerebro-spinal fluid flow through the junction, helping to reduce raised intracranial pressure.
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