bombsh3ll

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

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 without medication; my diastolic BP rises excessively on standing however remains in the normal range. I don't have any evidence of blood pooling. I agree it is thoroughly miserable, & I would much rather have any amount of pain or other disability than living permanently presyncopal as it is so limiting and uncomfortable, & unlike pretty much any other symptom there is no effective medication for it. Do you do any form of recumbent exercise? Pedalling does seem to help me just a tiny bit. Also spraying my face with cool water from a little spray bottle. Stay strong, & know you are not alone. B xxx

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 own intracranial pressure from the start (granted I was concerned about raised rather than low ICP) but no-one listened. The person who would check this is a neurologist. An optician can also check your eyes for signs of raised, but not low, ICP. B xxx

@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 not stand up after one specific event, I was left to hunt down the diagnosis myself, & unfortunately came upon POTS five whole years before I discovered there actually was a recognized mechanism for a forceful valsalva in a person with a connective tissue disorder, to immediately destroy a life like that with my exact symptom complex. When I pushed to see an autonomic specialist I was formally diagnosed with POTS based on a modest HR increase, but nobody could explain how a forceful valsalva could cause that, or the splitting orthostatic headaches, or why no medications typically used in POTS ever helped me. Acquiring an untreatable diagnosis therefore led me to stop going to the hospital & demanding answers, whereas I think I would have done had I never come across POTS. It is so easy with hindsight, however I do believe that the emergency physicians & certainly the neurologists that I have seen should have suspected a CSF leak based on my classic presentation, clear inciting event plus connective tissue disorder & am considering a malpractice claim against the NHS trust. I have to fight for "out of area" funding as I live in Scotland where the NHS only automatically pays for treatment within your local health board, and there is not a specialist team that treats my condition where I live. Not only does this delay joining the waiting list for treatment if successful, but may not be successful if they decide I should be treated by somebody within my health board who lacks specific experience in patching spontaneous leaks at an unknown spinal level in connective tissue disorder patients. We are looking into paying for at least the first blood patch privately and/or registering at my mum's address in England, where patients are free to travel to see an appropriate specialist within the NHS, even if it is not their local area. The test I had was MRI whole brain and spine with gadolinium contrast, done in March or April of this year. This picks up 70-80% of leaks. Mine was initially read negative by an NHS hospital in Glasgow, & there the trail stopped, until I sent the same scan to one of the world's top neurosurgeons in the US Dr P Bolognese, to be screened for craniocervical instability. Without me mentioning my suspicion of a CSF leak or that my illness was valsalva induced, he wrote back that it was suggestive of a CSF leak & that I should be further evaluated for this. I then went private to see a UK specialist in CSF leaks & was diagnosed. To anyone who knows of the condition, mine is a barn door diagnosis, but sadly even as a GP myself I was not aware of this rare condition until I watched Dr Carroll's video, so was not in a position earlier in my journey to advocate for the correct test. @Yhoun thanks for your kind wishes, I hope things are going well with you. I know my story will not apply to very many on here other than as a message to never give up in trying to find the cause of your illness if reasonable avenues remain unexplored, however in a very short time of starting to participate in CSF leak forums I have discovered it is not uncommon for (particularly female) patients to be told they have POTS prior to their diagnosis of a CSF leak, so I am certain there will be others visiting this site who would benefit from knowing about this. I wish I had. B xxx

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

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 really knows whether things will improve, stay the same or get worse in the future, but I would be basing the decision not on what the pregnancy and birth would be like primarily, but what your ability to meet the child's needs from baby to adulthood is likely to be, as this part lasts far longer. B xxx

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 chronic orthostatic intolerance. That isn't to say it doesn't help some people, & is more benign than some other drugs often tried with equally scant evidence. B xxx

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

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

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

@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, not because my problems were psychological as the doctor believed, but because I had read that SSRIs could positively modulate the ANS in some people with orthostatic intolerance. If your illness is secondary to Sjogren's, would autoimmune treatment be something you could possibly look into with your rheumatologist? There are reports of people in that situation benefiting from IVIG &/or other immunomodulating drugs. B xxx

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 seconds later" but I could see exercise being beneficial. Perhaps if I had discovered the real problem at that time things could have been very different. Even now I force myself to sit up on the couch all day as I see becoming completely bedridden as "the end", & also I think if it was going to heal spontaneously it probably would have done so in 5 years! Once I have my blood patch though, I will spend the first 24 hours lying completely flat, then at home I will be on rest for the first couple of weeks. This gives it the best chance to seal. I always used to joke that I would never let my children play a wind instrument as it ruins your face plus I hate the din, (not that any of them are musical whatsoever) but now I definitely would not! B xxx

@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

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

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 science available to us today, ie idiopathic, however if a person is born completely healthy and functioning normally, & subsequently becomes disabled, there IS always a reason, even if we are not currently able to identify it, just like other conditions were mysterious before the advent of MRI scans or specific lab tests. Researchers continue to actively look for things that can cause orthostatic symptoms, such as autoantibodies. Additionally some causes, for example genetic abnormalities, may become identifiable before a specific treatment exists for that type. My message is simply that when a person presents with symptoms, all known conditions potentially causing that clinical picture should be eliminated before declaring it idiopathic & untreatable. I just wanted to present my own diagnosis as one example, particularly as I am quickly finding within CSF leak groups a prior POTS label is not uncommon. It is very easy to see how one could be confused for the other, with orthostatic heart rate testing not differentiating between the two, so there will potentially be other people reading this forum who would benefit from looking into this diagnosis. B xxx

Epidural blood patching is usually done by a neuroradiologist or anaesthetist. B xxx

I can see the point in theory but when it is the illness you are actually seeing them about that makes you sometimes unable to attend at short notice, that should absolutely be taken into consideration. Whilst frustrating you are probably better off without this doctor as it doesn't sound like he has much understanding. Sorry you are having to deal with this. B xxx

Hi MissMermaid, Welcome, although I am sorry you have found yourself here! Two things that I found helpful for intractable nausea were mirtazapine & diazepam. I have recently been diagnosed with intracranial hypotension so my underlying pathology is likely to be different to yours, however these are both useful agents for nausea of central (neurological) origin vs gastrointestinal causes. B xxx

Are you on any other medication? The focus on psychoactive medication is something I would want my doctor to explain. Trazodone is a sedating antidepressant, buproprion an activating one. It may be helpful for your doctor to clarify the rationale for anything you try next, particularly if it is another psychoactive drug. B xxx

Thanks! I am so pleased your friend was successfully treated. I think diagnosis is the main barrier to treatment - the mean time from onset to diagnosis is 13 months, without counting all those who are never diagnosed at all, then after that is access to somebody experienced in patching for this indication. B xxx

Yes, it seems some people do develop a tolerance after a while & need to cycle meds. Have you got a good gastroenterologist to work with? B xxx

@dancer65 thanks I still have a long way to go in terms of NHS process to get funding for the treatment, we are considering paying privately for at least the first blood patch as it could take up to a year to even get on the NHS waiting list if I am successful in applying for out of area funding, however I am grateful to finally receive an explanation & answer as to how a forceful valsalva could instantly destroy a perfectly happy, healthy life like that, rather than being disbelieved & treated like I had a mental disorder each time I explained that I had been completely well until I tried to blow up a water bomb, & unable to be upright since, just because nobody could explain it & every test kept coming back normal! #orthostaticnotpsychosomatic B xxx

Absolutely! I believe 100% that identification of orthostatic intolerance should represent the beginning, not the end, of the diagnostic journey. Sending someone away with a diagnosis of "POTS" is like sending someone away with a diagnosis of "breathlessness". It is a symptom, not a disease. Something is always causing it, & a condition is only ever idiopathic when all known causes have been looked for. B xxx

@Clueingforlooks when I first became unwell nausea and vomiting were a major issue, & I lost about 6kg in 3 weeks. I used mirtazapine off label as an antiemetic and it was more effective than any drug with a human licence for this purpose. I also to this day find supplement drinks/protein shakes very useful, have you tried any of these? B xxx

It makes me so sad whenever a physician is not interested in research, or learning something new. The attitude that "if it wasn't known when I was at medical school then it either doesn't exist or isn't important" becomes more and more dangerous the more time elapses since they qualified. I was always interested in science & new discoveries. Every day that I worked I learned something new, sometimes from publications but often from patients. It is always OK for a doctor not to know something (as long as they are honest about that & make it their business to either find out or refer you to someone more appropriate), but it is never OK not to care. The AChR antibody was at least part of the routine battery of clinical tests at NHNN London when I went. It was not part of the research study that I submitted blood to. B xxx