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bombsh3ll

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About bombsh3ll

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  1. Your blood pressure is low - it is possible that addressing that may make a difference for you. Mine is more difficult to address as my vitals are normal, & manipulating them pharmacologically is neither helpful nor indicated. Have you ever tried medication to raise your BP? Do you have a good doctor? B xxx
  2. Hi Eraena, I too have constant lightheadedness which is only alleviated by lying down. It is by far my worst symptom & I HATE it. I have just been diagnosed with a CSF leak & am waiting for treatment, but have had it for over 5 years now. This is rare & probably not relevant to you (unless you also have other features such as severe orthostatic headaches, sudden onset possibly following a minor trauma of some kind, connective tissue disorder etc) but I just wanted to let you know that you are certainly not alone in dealing with this symptom. My HR and BP are normal witho
  3. I have a CSF leak which causes splitting orthostatic headaches along with all the other goodies. I take co-codamol (combination of codeine and paracetamol) and also ibuprofen. Also use cooling gel pads on forehead. Only lying down really helps though. Aspirin at that dose is not advisable for daily use, although I can understand you being desperate for some relief. Due to my own experience, I would highly recommend this. It may be high, low or normal but is definitely worth looking at for anyone with severe headaches needing to take daily medication. I raised concerns about my o
  4. @MeganMN Thanks for your reply, I am glad you are doing better and getting to the bottom of your problems also. It does concern me the number of people who are completely well until they have a concussion or similar injury & cannot be upright immediately thereafter, & acquire a POTS diagnosis without consideration of a CSF leak. I am glad dysautonomia awareness is increasing & that there is so much information online now about POTS, but in a way I feel this was detrimental in my case as with no healthcare provider interested in why a previously healthy woman suddenly could no
  5. I have also come across a product called Heart calm, which some people swear by. I understand it contains both potassium and magnesium. I have not tried it myself as mine pretty much went when I stopped licorice but i think it comes with a money back guarantee if you are interested. B xxx
  6. Yes, the actual pregnancy & birth is only a small part of having a child, & however bad that may be it is only transient. All reports seem to suggest a low rate of complications, however there is likely to be selection bias in that the most unwell patients are not becoming pregnant so those delivering babies are likely to represent those with milder illness. The main consideration though is not how things will go during that 9 months, but whether you will be physically able to be the parent your child/ren need & deserve to have. Only you can answer that, & nobody re
  7. This is true, however I was meaning clinical trials where it is compared against a placebo in a patient group large enough to detect any clinically significant effects. I came across this https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3956655/ which does not show effectiveness against a placebo, but of course a longer duration of use would be of more value than a one off dose. I believe there may be a couple of studies involving SSRIs showing favourable effect in episodic syncope, but have not come across anything demonstrating superiority over placebo in long term use in any form of
  8. I do not get too many now that I no longer take anything that affects electrolytes, but yes they are definitely unpleasant. Are you on any medication that could be causing or contributing to them such as fludrocortisone, which drops potassium? I did get the odd run of palpitations in pregnancy too, whilst I was healthy. Magnesium is said to be helpful in reducing frequent ectopics. I did not find this to be the case for me, but keep it around as a good laxative! B xxx
  9. That's great you've found a medication that helps you! For the right patient & the right indication, antidepressants can be highly beneficial. I am just not personally a fan of their use for dysautonomia from my own experience & the absence of supporting peer reviewed controlled studies, in the absence of co-existing depression or anxiety. B xxx
  10. I second these perspectives. I would have chosen not to have children had I known they would effectively grow up without a mother & acting as my carers from a young age. If you are relatively well what about adopting or fostering an older child? B xxx
  11. @MTRJ75 I am sorry you are suffering. I think coming off the bupropion is sensible given the high HR and BP you have been experiencing, & hope you can work something else out. I do take a small dose of diazepam now & then which is very helpful for taking the edge off the distress. The first medication I was ever prescribed after presenting 5 years ago with classic symptoms & inciting event for the spinal fluid leak I have now been diagnosed with, was Prozac. It says a lot. Needless to say I did not take that for very long, however I was willing to try it at the time, no
  12. No - I came across POTS during the first few days of my illness when searching for things that could suddenly rob a healthy young woman of the ability to be upright & read all the advice to avoid prolonged recumbence, force yourself to be upright etc so no I have never lay flat for any period of time. That advice continued once I was formally diagnosed with POTS a couple of years in. I despised the insinuation that I needed to "recondition" - as if I would have gone from being able to run 5k no bother right up until I tried to inflate that thing, then too "deconditioned" to stand up second
  13. @Clueingforlooks it is good that you are being investigated, I hope it leads to a more productive treatment. I have had reflux since childhood (weak gastroesophageal sphincter due to EDS) which worsened after each pregnancy, but I was lucky to find omeprazole consistently effective. Boy do I know about it if I forget one though! Good luck with your tests, B xxx
  14. That's great to hear! It would certainly explain some cases of spontaneous remissions. I personally have never experienced remission other than for 24 hours after a long flight, twice. I recently found a medical paper on disorders of intracranial pressure reporting high altitude to be associated with improvement of intracranial hypotension. I think that probably relates to transient increased CSF production though rather than actual sealing. I hope your daughter continues to do well. B xxx
  15. I had a MRI whole brain and spine with contrast, which was initially read as normal here then identified as suggestive of a CSF leak by a US neurosurgeon, then I consulted a UK expert in CSF leaks. Further tests such as myelogram can be done but will be only be done in my case if I do not respond to the initial treatment of 3 blood patches. I do not mean to suggest that everyone should be on an endless quest for a treatable cause once all known or suspected currently diagnosable conditions have been reasonably eliminated, as some cases at the present time will remain unexplained by the s
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