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Everything posted by bombsh3ll

  1. Sorry your boys are dealing with this too. I think watching your children suffer must be harder than having it yourself. When you say treatment never touched the POTS, are you referring to numerical heart rate changes or how unwell you feel upright? I am only concerned with the latter (& my HR is normal anyway). How frustrating that you have started to leak again, still at least you should be able to obtain treatment more quickly now that the surgical findings were proven last time. How can you tell it is from a different site without it showing on imaging? For me, nothing leak
  2. Thanks for the shares guys. I've come back around to this after further research & consulting with another couple of specialists. Alex I know you've had successful treatment but what about you Jayut, have you pursued this line further? My MRI contrast was normal but I am not letting go now without further imaging & preferably a couple of blood patches, given I have such classic symptoms, a clear precipitating event known to cause spinal leaks, before which I was completely normal, and a connective tissue disorder. B xxx
  3. Bending over exacerbates the searing pain in my head, & coming back up again worsens the lightheadedness. I sit on the floor to pick things up, or get my kids to do it (as it is usually them who have dropped things). B xxx
  4. Very similar to me! (except I can not remain standing that long & my diastolic tends to go up a bit more) Your HR increase is just about borderline for POTS - going from 69 lying to 97 standing is 28bpm. Typically the threshold for a POTS diagnosis is 30bpm but I have also read of 30 being used for a tilt test, and 27 or 28bpm being the cut off for an active stand test which is what you did (as the latter uses the leg & trunk muscles). For adolescents an increase of 40bpm is quoted. The cut off is very arbitrary though, & whilst meeting it can be helpful in terms o
  5. Midodrine will drop your heart rate reflexively. I do sometimes have a resting HR in the 50's naturally, but it was in the 40's when I tried midodrine. B xxx
  6. You don't even need to have an abnormal HR either to have symptoms unfortunately. My BP and HR are usually perfectly normal yet I am unable to stand for severe presyncope, & very lightheaded sitting up too. I met criteria for POTS on testing but mostly not in day to day life. What even a lot of doctors fail to understand is that cardiac output is not equal to, nor can even be approximated, by measuring these variables. Cardiac output, ie the amount of blood pumped per minute, is stroke volume (amount pumped per beat) multiplied by heart rate. The equation is CO = SV x HR
  7. I just had a look at this as obviously anything that potentially helps blood back upstairs or even maintains muscle tone in non upright folks could help. Whilst I am not convinced it would be hugely beneficial, I cannot see any way for it to be harmful other than financially or in terms of disappointment. There are a number of similar devices around which do the same thing, so you may be able to get one of those for less, or alternatively see if you could buy one second hand. It looks like the sort of thing people would get as an unwanted gift or fad which they only used a few time
  8. That is fortunate & probably made the world of difference. I am lucky in that regard as the hospital in Barcelona have many patients with our issues. I have tried both of those meds (and a number of others) but they didn't help me. My BP and HR are generally textbook normal, so wouldn't benefit from being manipulated. I believe I have low stroke volume as a result of hypovolaemia, hence low cardiac output. That's more difficult to prove, and to treat. Or, it could just be that the inflow/outflow to the brain is compressed as a result of spinal fluid leak or cranial settling. Did
  9. Thanks. I would be in the hospital the first 10 days or so then a disabled adapted apartment with nurses on site for a couple of weeks after that. It is not so much being alone that bothers me, more the impact of landing on the fusion if I was still a fainting risk, although of course having someone with me would be helpful. The standard advice of "lie down when you feel faint" doesn't really help me, as I would spend my entire life supine, so what little I do, I do presyncopal. I will speak to the surgeon about this of course, but if there was medication to stop fainting nobody w
  10. If heart rate zones are an issue for you - they are for me just the other way around, I would be unconscious long before my HR got into the recommended zone - you can go by the RPE (rating of perceived exertion). Yes, this protocol was developed for people who are significantly limited in terms of orthostatic ability, I would think those who are able to walk with no problems or work out upright are not really the group it is aimed at. Of course healthy people or those with mild symptoms that don't limit their daily life can benefit from exercise too, they just don't specifically require a
  11. I was not able to progress through the full thing but found it helpful to customize to my abilities & equipment that I have. For me the heart rate zones were an issue as it seems to start from the assumption of a high resting heart rate (therefore a relatively low level of exertion would take you into the required zone), which wasn't the case for me, however you can use perceived exertion instead. I just thought it would be helpful to let anyone know who might be looking for it as it is much discussed & until now remained a big mystery to anyone who didn't get a copy through thei
  12. A kind of sad but sweet thing happened with my family regarding this the other week - My son has heard both my parents (separately, they have been divorced for many years) trivialize & dismiss my illness. He had a nosebleed one morning, didn't lose a lot of blood but the sight of it made him feel really faint, & he went pale & had to lie down quickly. He didn't actually pass out but came close, it really gave me a scare at the time as it is FAR worse seeing your kid go through it, but by the time we got to the hospital he was absolutely fine. I later heard him telling m
  13. Thanks, I would be really interested to read about that, do you have a link to it or know the author? It was such a miracle, I would have thought the opposite would occur with flying generally being considered dehydrating! There has to be something, especially given it happened twice with me & several times to the other person I know about. B xxx
  14. I honestly think that people close to us minimize our suffering as a coping mechanism for them, because it is easier to believe their loved one is lazy/weak/selfish etc than to accept that person has a life destroying illness. It is about prioritizing your own safety and wellbeing above their psychological discomfort. B xxx
  15. Anyone interested in the Levine protocol who hasn't been able to access it through their healthcare provider - it is now publicly available from the following website: https://sites.google.com/site/patientcarejs/levine-protocol B xxx
  16. I actually had the opposite experience with a long flight, although granted I was not staying at a high ground altitude for several days. Earlier on in my illness when I was still well enough to travel, I went on an 8 hour flight. The 24 hours after that, I was restored to completely normal health. The same happened following the return journey, so it wasn't a fluke. I have never experienced remission any other time. I have heard of one other patient with POTS who experienced the same thing. My theory is that the mild hypoxia led to reduced renal blood flow (a recognized phys
  17. I totally get why you made that decision. Single level fusions in EDS often end up exacerbating problems above & below & further surgeries later on are common. Also that level is too low to have any bearing on any brainstem pathology. That must have been really scary, I am glad her fusion was ok. Frustrating that the PT didn't listen post-op. The team in Barcelona where I would have surgery have a lot of dysautonomia patients so hopefully they would be prepared. How did you deal with fainting in daily life whilst it was healing? That is what worries me, if it didn't work I cou
  18. That's smart - many people have had innocent Chiaris operated on but didn't get better without coexisting instability being addressed - Drs Bolognese & Henderson term these the "complex Chiaris" where there is CCI as well, & I read a paper about the Chiari being what gets them in to see the neurosurgeon, but isn't actually the problem, then the CCI is discovered (if they are lucky). There have also been reports of patients with the appearance of a Chiari which is actually the result of a spinal fluid leak & the brain is sinking downwards. In these cases, when the leak is foun
  19. It is an expected response unfortunately that alpha blockers lower blood pressure and are unlikely to be tolerated by a patient with dysautonomia. I would see if your urologist has any other suggestions that do not interfere with BP. B xxx
  20. The neurosurgeon that I have seen was very honest about both the potential for, and degree of, improvement being impossible to predict in advance of surgery, however he only offers surgery where he believes it has the potential to improve someone's quality of life. He does however specialize in disorders of the craniocervical junction, particularly among patients with connective tissue disorders (ie atraumatic acquired instability) and the majority of those he performs this surgery on have symptoms of cervicomedullary syndrome - predominantly dysautonomia, some have additional neurological sym
  21. I do not believe it is currently considered a standard treatment unless you have been diagnosed with an autoimmune disease, however research is increasingly focusing on an autoimmune basis for POTS, with a number of antibodies being implicated in at least some cases. Although I personally have reason to suspect a structural cause in my own case & have no features suggestive of autoimmune disease, I would still give IVIG a try myself if it were offered, as some patients have really benefited & at this stage the science isn't at the point of being able to predict in advance which pa
  22. Thanks for replying, it is great to hear the experiences of someone who has actually dealt with this. I can understand her not wanting the upper segment done as this is where most of the neck's range of movement lies. Can I ask what benefits she gets from wearing the collar? The adjustable positioning being helpful makes sense - I think there is a common perception even among some surgeons that there is one optimal position for the neck to be in, which cannot really be the case as like other joints it is designed to move. One thing that concerns me about the fusion surgery is if I had it
  23. I tried the popular Aspen Vista which is adjustable, and it didn't help me either - I understand collars are only really helpful for those with rotational and/or horizontal instability, not vertical. B xxx
  24. PS Kim were you ever offered a trial of invasive traction (halo brace or Gardner Wells tongs) to help give an idea of whether surgery would benefit you? B xxx
  25. Thanks Kim that is useful to hear. I cannot drive anyway due to syncope/presyncope, but can totally understand that being a concern if you can. Those are my questions exactly! - I still feel that a spinal CSF leak is the likelier culprit (as valsalvas are a recognized cause of leaks, & EDS is another risk factor) which is why I am continuing to pursue this avenue first although my MRI contrast was negative. Childbirth x3 didn't bring it on for me, it was just blowing up that dratted balloon, but it was a slightly different type of expiratory straining which is hard to descr
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