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About GasconAlex

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    South West France

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  1. Unfortunately MRI only shows so much, and often in neurological problems shows very little. In my case I have had repeated MRI's ( 10 in the last 3 years) and they have only shown expected damage and no explanations for my problems. Unless there is a largeish physical problem it is unlikely to help, but it is worth checking even so.
  2. A problem with lists is that you list everything the neuro says it's psychological as you have a laundry list - but when you don't have a list they say why didn't you tell me about xyz. I take a list and start on the major stuff then bring up other stuff if it looks like it might be relevant. Unfortunately I have 'issues' with my local hospital general neuros who keep sending me for hyper specialist neuro assessments who come back with there are neurological issues but these are not my specific corner. I end up no further on. Hopefully you hit a good neuro who can help you.
  3. Treatment for CSF leaks is (in the first place) staying horizontal for a few weeks to allow the membranes to heal. In lots of cases this apparently works. Another option is the blood patch. This is where your blood is taken and then injected into your spinal column. For me this worked perfectly for the headaches, 100% gone with no pain pills necessary for 36 hours. No headaches when vertical at all. (You can have this done if you are a Jehovah's witness by the way - I'm not but it came up when I was researching the treatment) But this is where it gets complicated for me, my gp, neurosurgeon think it is a leak that cannot be seen on the MRI (if he can't see it, or where it might be he can't fix it) on the otherwise the neurologists who can't agree but the one who is responsible (and did the patch last time) disagrees and doesn't want to retry. Without definite proof no one else wants to contradict him.
  4. Because the headaches became utterly ridiculous I take slow release tramadol all the time. With this I can be vertical for up to 120 minutes before it gets too bad. If I have vibrations (like car trips) it makes the headaches much much worse. Then I take more tramadol and also paracetamol until I have real problems. By that time I might need 12 to 36 hours flat. It's not perfect but the chronic pain people think it's better to be able to be vertical (and yes it doesn't get rid of the pain) than to decondition myself.
  5. Voted yes but after about 3 years they are much less orthostatically sensitive. Now I take more pills and spend more time vertical.
  6. @bombsh3ll never had a myelogram, did have a full spinal MRI looking for leaks. This took over 50minutes in the MRI (from image timestamps) nothing relevant found. Family has HEDS, but no genetic testing done. Some suggestion of Marfan's, from a range of doctors for different family members but consensus moving towards eds. (Last year I had an angio ct looking for aortic dilation the neuro came back with 'sorry signs of dilation' cardio said ' yes but 'just' within normal so not worrisome') I have quite a lot of dystonia, so no longer showing flexibility! @StayAtHomeMom depends on the leak. Constant high volume leaks are more obvious, intermittent lower volume leaks are much more difficult. http://dizziness-and-balance.com/disorders/central/csf-leak.html Has some interesting stuff but also quotes that no imaging is particularly useful. They look for diffuse symptoms but these are not definite. To really look you have to examine each area closely. I remember the neuro intern saying ' ah we'll need an MRI' Head neuro saying 'of what?' Intern - 'the head' HN - 'you can't say that, you need to look for something' @bombsh3ll if some of your stuff gets fixed, you can probably live with the rest. Its what I'm hoping for. Sorry this is a bit disjointed, I broke a rib on Monday and this has made life even more difficult.
  7. The confirmed leak was spontaneous, but linked to an ear tumor. Since then the family has confirmed eds with pots which means the rest of us have looked at the symptoms. I'm fairly certain eds is there but the doctor wants to sort out the neuro deficits and severe headaches before looking into this - which might be the underlying cause. The otologist who examined me last was not sure where the fluid he found by rhinoscope was coming from, so needed to check. That is when the bony defects in the sinus were found. I have the next MRI in December to check, but the imaging is often not conclusive in leaks. He strongly suspects another (different) spontaneous cranial leak. The blood patches were tried because of the lumber punctures I've had, these were fairly difficult due to low bp. The neuro who did them is now chief neuro at the local hospital, he didn't want to do the patches and only did when told to do so by his now retired boss. This makes having another try difficult to say the least. My point is that even with issues and specialists thinking there might well be a leak, because the MRI's are not clear it is difficult to progress. I'm doing better this year, still have lots of problems but no inpatient stays so far this year. That's a lot better than the 25 ish days last year and 142 in 2016. It's certainly easier for my kids.
  8. Very difficult getting a leak confirmed. Looking towards my 10th MRI and still no general signs visible. The problem being that I was operated on 3 days after an MRI, which they were sure meninges were still intact- they weren't- and I had a leak confirmed surgically (along with some brain herniation) this meant that operation wasn't successful. After meningitis still have problems, including postural headaches etc. However now have disagreements about causes. Neurosurgeon convinced is still leak, some neurologists think maybe, some no. The Neurotosurgeon thinks not because other than the tegmen tympani being mostly missing nothing else shows. The ENT has just run a new cone beam but that shows the ears fine but large bony bits missing in the brain / sinus border. This is with a very slow nose drip that increases when the hr goes into overdrive by standing up. Have had a few blood patches that work for a day or two (during which time my nose runs more) then stop. My gp is convinced its organic, some of the local neuros think might be related to eds, some say psychological - psychiatrist says organic. So my case is a little complex, I'm leaning towards the problems of pots and eds always being there and I thought this was normal (physio says partial dislocation of jaw if do move too far is not normal) but the other problems and leak just put it over the edge. If you have visible signs on the MRI it's easy to show a leak, if not you run around the houses again and again. The pots (from ttt) was easy to show, although the cardiologist here think pots should be an instant acceleration on standing not gradual over 2 or 3 minutes. Good luck on trying, I'm hoping at least some of my problems are sortable.
  9. As link says the ear use is inaccurate as tends to overestimate the spO2. Not underestimate. The second point is raising arms might well reduce flow, but if everything is going well this cannot be the case for the head, as this is the default position, thus any veinous effects should be null. Your points are valid, but do not explain a reduced spO2 reading whilst standing on an ear reading except if there is an effect from reduced O2 due to position. If the ear gets less O2, presumably the brain does too. Lastly although the research points out inaccuracies in readings on the ear, this is of the order of a % or 2, not 15%.
  10. After seeing a huge decrease in saturation O2 in my fingers by raising them from lying down about 30 cm above heart level (drop from 95% to 80% or lower) above this level (arm raised straight up from lying flat on bed) my pulse oximeter cannot find a pulse so I could not compare further. The exercise didn't alter my pulse really at all. I then tried to use the oximeter on my ear - where I was able to get comparable readings as to those on my finger (I used a mirror to read the result). This is where it gets more interesting. When standing I got the pulse rate bump of about 30 BPM but although still consistent on pulse readings the ear spO2 dropped to around 80%. I tried a couple of times, the values varied but were always around 80% +- 3/4%. Looking around on the use of finger pulse oximeters on ears I came across this The Ear as an Alternative Site for a Pulse Oximeter Finger Clip Sensor which concludes that it is unsuitable as the ear varies beyond acceptable bounds with the ear over reading spO2 which could be dangerous in monitoring, missing hypoperfused patients. So does this indicate cranial hypoperfusion on standing, and does it happen to other people who suffer either orthostatic intolerance or POTS? If you have a pulse oximeter and can get a consistent reading on your ear I'd like to know if this is generalised, just me or if there is research out there on this.
  11. I use a wheelchair in the kitchen. Firstly as I use a crutch or wheelchair at all times, and it's hard to carry anything with a crutch! Secondly I can stand when able, at sit when not. You can still do most cooking sitting in an unmodified kitchen. I can also take a breather before doing heavy tasks like draining pasta. If possible I try and take a 5 minute lie down between getting things almost ready and eating, otherwise I tend to do everything for the meal then feel so awful I don't get to eat any of it.
  12. If you can get it prescribed I use Primperan / Metoclopramide which I use when the nausea is really bad and I cannot miss another meal (Weight issues, hunger is not something that bothers me), or I will be throwing up again. It's not a longterm solution but occasionally when truly awful it is a good standby.
  13. I still don't have a proper diagnosis after a TTT in May. The test results specify postural orthostatism, with increase in bp and 50+ BPM to 150 BPM. The report wanted a holter and 24hr blood pressure monitoring, this done the cardio did not look at the TTT, and concluded that as the heart rate rises were not instantaneous they could be excluded. They were also dismissive of the blood pressure issues has they maxed at 138. More concerned with hypotension as horizontal night time average was 86/48. There was a few other bits of rubbish in the report, like pressure drop when vertical but not reported by patient (never asked me tho') and more arrhythmia than I'd like. So now my gp doesn't want to treat the tachycardia, as this is likely to reduce the bp. The cardio doesn't care as within normal for heart stuff, and the neurologist is happy to leave it as dysautonomia with postural orthostatism (tachycardia). Doesn't help me much! So although it is good to have the TTT (and get the copy report as it is yours) it might well not answer all your problems, and the treatments at mostly symptomatic anyway, so don't stress the test. Depending where you are it might take even longer to get tested than see the neurologist, I hope not - but the delays are often there.
  14. Wrist bp monitors can be easily affected by position changes. Upper arm ones are more reliable. I was told that if you took 3 readings straight after each other and they were about the same then probably right, if they are all over the place then there is an error! I thought my odd BP's were the machine, but no it's me.
  15. Check the effective times of your medication. I was sleeping really badly and waking up and staying awake. I'm on baclofen for muscle tension, this hangs around in your body for about 4 hours, then drops off. The doctor suggested taking a dose when I woke up in the middle of the night, I now do this and fall back to sleep about 20 minutes after the dose. It is not perfect, but for the most part this helps. Speak to your gp, changing dosage / dosage times might help, always worth looking at.
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