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Everything posted by bombsh3ll

  1. Thanks for the update Jim, it is always interesting to learn about others' experiences & compare notes. Raised ES R & joint pain, especially large joints like shoulders suggests PMR, but that wouldn't explain an abnormal EMG. Do you have follow up? It may be worth discussing an empirical trial of steroid treatment to see if you responded. B xxx
  2. I have tried a brace & it didn't help, but it would not really be expected to with vertical instability only, as the braces provide no upwards traction. I have the option of trying a halo brace, but my surgeon doesn't feel they give the best idea of postsurgical results (although some do). I would do it in a heartbeat too if I could know it would restore normal or reasonable cerebral blood flow & orthostatic ability! It has been 5 years for me now, on the severe end & medication refractory, & I am inclined to agree with the consensus of the leading experts that s
  3. I am not at the point of making this decision yet, & am not asking for advice but am very interested to hear what other people would choose; A small but rapidly growing cohort of people with severe dysautonomia, most of whom have diagnosed or suspected EDS, have experienced dramatic improvement & in some cases complete cure, by undergoing craniocervical fusion surgery. The skull is lifted up, then fused to the neck in a rigid position, & the neck is also fused. There are variations on this theme but the procedure in my particular case would remove all movement in my neck, perm
  4. I no longer salt load as such, as I personally found it unpleasant & ineffective plus it suppresses the renin-aldosterone axis long term, however I do use Trioral rehydration sachets which contain a decent amount of salt compared to other hydration drinks and are reasonably priced. One sachet makes up a litre, & it contains balanced electrolytes including potassium. If you don't like the taste it can be flavoured with a bit of fruit juice, diluting juice or other flavouring. I definitely could not stomach salt tablets (& I can usually eat anything as I am on omeprazole), but
  5. I don't know about your area but certainly in the UK there are lots of mobile hairdressers who cut/style both men and women. They often charge less than a salon too. Just type your area and mobile hairdresser/barber into google & I bet you find loads. Also if you have any local advertising sites (we have Gumtree) where people buy and sell stuff, there are often mobile hairdressers advertising on there. B xxx
  6. I am sure that will be helpful for others to know about. It is really disappointing that somewhere like Stanford would label your daughter's seizures psychogenic. That is only slightly less offensive than "hysteria", & belongs in the same century as offering to perform an exorcism. It sounds like you have come across a useful agent & I hope it continues to do the job. Out of interest though has their cardiologist ever discussed ivabradine, which lowers heart rate with no BP lowering effect at all? B xxx
  7. PS have you ever seen or do you have the opportunity to see an autonomic specialist? It may be worth trying to do that if you can to get their report as a regular neurologist/cardiologist may not have sufficient condition-specific expertise to be able to comment on your long term prognosis. A number of the doctors I had seen that I got reports from could not give a definitive answer as to whether I had any scope for improvement as it was beyond their expertise, & I thought this was going to be a real problem for me. They were all agreeing that I was unable to work right now but only
  8. I know I am in the UK & things are possibly different, but I got approved first time (I expected a fight because that seems to be what most people experience) & I based my case purely on physical symptoms & limitations. Yes, dysautonomia can both mimic anxiety in terms of some physical symptoms like a pounding heart, shaking etc, & be a cause of secondary anxiety due to having a horrible physical illness with no effective treatment, but that doesn't make your main problem anxiety. Did you have a diagnosed anxiety disorder prior to becoming ill at all? I would
  9. Licorice root can be incredibly helpful, it was life transforming for me until the effects waned after about a year. I did not tolerate fludrocortisone, yet licorice did not give me the unpleasant side effects. During that precious year I was able to make many happy memories with my children, who were very young at the time. I took Swanson's brand. I no longer take it now as it lost effectiveness, & my BP was going too high. As long as you monitor BP & electrolytes, & check with your own doctor that you have no individual contraindications/potential drug interactions, it can b
  10. I'm convinced I am low flow. Wish I could get my blood volume & Ang II measured! B xxx
  11. I am not familiar with the system in the US, but have just been through the process in the UK. I have heard there are some kind of no-win-no-fee representation deals in the US where someone takes on your case for no cost to you upfront, & that these are quite helpful for people applying for disability. In terms of making your case, I really think you would be best placing more emphasis on physical symptoms rather than "anxiety", as not only are they generally regarded as more serious, if you are looking at a permanent claim it can be hard to make a prediction that an adult of y
  12. I guess you have to look at disability benefits in the same way I regard a wheelchair - having it doesn't make you any more disabled than you are anyway, it just makes living with it a bit easier. It would have been much harder if I'd been refused, as living on my husband's wage alone would be tight. I am very thankful to have the financial stress taken care of & not have to go through repeated assessments after a certain time. I am sure I will get to that stage too. Even if I could get stable to just volunteer somewhere in a small capacity would be nice. B xxx
  13. Same here. On the scrap heap at 39! Just have to remain hopeful of more treatments becoming available in time! B xxx
  14. I haven't had the chemical stress test (& nor would I because I don't feel I could tolerate it), but I had a horrid reaction to IV iodine contrast CT dye the other week. I would describe it as haemodynamic rather than allergic as I had no rash, itching or wheezing etc, but it made me very flush & HR went nuts, similar to what you describe. I managed to get some IV fluid afterwards (wasn't going to let that cannula go to waste!) which helped things settle down a lot. Is there some way you could get a bag or two of saline to help you out if you are still feeling unwell? I hop
  15. I received the final decision on my disability pension today - I have been awarded the upper tier of NHS medical retirement benefits, the category for people not expected to be able to return to the workforce in any capacity. Still shaky after reading the report, my heart was pounding when I opened the envelope! Whilst this is the best possible outcome & means a little extra financial security for my family, I am also sad seeing the extent of my limitations & poor quality of life set out in black & white - it makes Dickens look like Disney! I know I need to focus o
  16. I find it hard to see how B12 deficiency would cause (or its treatment would improve) a structural problem like spinal stenosis. Both have been postulated to cause/worsen dysautonomia symptoms so are definitely worth excluding if relevant. B xxx
  17. I use a wheelchair too, & wish I had bought one a lot sooner so I could have gone out more with my family rather than missing out. I try to walk a little when I can, & walk pushing my chair. It may look strange but I don't care. Sometimes people will joke that I'm missing a passenger, & I explain that I have a condition that means I can't stand for very long without fainting. I don't mind that at all as long as they aren't rude. Some things to consider when choosing a wheelchair are - how portable is it, can it fold easily & be transported in a car boot? Can you self
  18. Thanks for sharing, that is really interesting! Although only 12 people were studied & no control group was used, it does support a volume enhancing mechanism which is what most of us with OI could use. It never worked for me but I continue to keep my bed on a small slant (approx 10 degrees) now (previously is was raised to about 30 degrees). B xxx
  19. Does anyone know of any published scientific research supporting that? I would be really interested if there is, as these are both measures I have tried. Dr Levine's study makes references to these practices in the discussion section, stating something to the effect that whilst the patients in the study were encouraged to do these things, so possibly this could have helped instead/as well as the exercise, these measures do not seem to prove effective in clinical practice. Not to say nobody benefits or should stop doing these if they find it helpful, just that it doesn't appear to have an
  20. I haven't tried it but would be interested to hear your experiences if you do. Will you be able to rent one to try or do you have to buy it? B xxx
  21. I didn't like anything about clonidine although on paper it sounded great & I was excited to try it, but it made me even more syncopal unfortunately. This is one of the papers that directed me towards clonidine https://www.ncbi.nlm.nih.gov/pubmed/6295714 I have no doubt it can be greatly beneficial in some, but I think for me (being mineralocorticoid deficient) I am highly dependent upon raised sympathetic tone, as uncomfortable as it is, to maintain my BP. Also my resting HR can be on the low side, this may not be the case for you. What I would say is start with a s
  22. I agree with your doctor's thinking, I believe that is the case with me as well. I just didn't tolerate the florinef but in theory it makes a lot of sense. B xxx
  23. Whilst helpful for picking apart what haemodynamic abnormalities a patient may have & potentially guiding treatment, as well as sometimes for disability purposes, a TTT can sometimes be unhelpful & frustrating if it presents values/patterns within the normal range on that particular day. Tilt-reproducable POTS can vary depending on a lot of things such as hydration, time of day, menstrual cycle, medication etc. So a person can have POTS & not show up on the TTT, alternatively they can have orthostatic intolerance with no specific HR/BP deviations from the norm but nevert
  24. Licorice root worked amazingly for a year then the positive effects wore off & it left me with very high blood pressure. Its action is similar to that of florinef but without some of the side effects. Unfortunately I have not yet found anything else that helps me to stand, although I too take a small dose of diazepam now and again when the chest pain & non-psychogenic sense of anxiety/doom is really bad, & that really helps those symptoms. As far as I am concerned, taking a small dose of a benzodiazepine for a medical condition as opposed to recreational use, and sticking to y
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