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Everything posted by bombsh3ll

  1. bombsh3ll

    Dizziness Remains.....

    Hi Megan, No it has to be the non DGL licorice, the DGL form has the active ingredient removed. The brand I use is Swanson's, which is sold by various online outlets including Amazon. Glad you're feeling better on less propranolol. B x
  2. bombsh3ll

    Dizziness Remains.....

    Hi Megan, Sorry you're suffering. I just wanted to add that I'm another with normal (or highish) BP and HR sitting and can feel absolutely awful with lightheadedness and presyncope with normal readings. O2 is also normal. The reason, I believe (I am a doctor but no longer working due to POTS) is that superficial readings of pulse and BP tell us nothing about cardiac output (for that you need to know stroke volume which is not easily measured), or cerebral blood flow. If you want the science - blood pressure is the product of cardiac output and peripheral vascular resistance. Two people could have exactly the same BP and HR, but vastly different cardiac outputs (and therefore cerebral blood flow). Person A could have a high stroke volume and therefore cardiac output, and a low vascular resistance (ie how hard the blood vessels are constricting), whilst person B (like us with dysautonomia) could have a miserably low stroke volume & cardiac output, with a high vascular resistance (cold hands and feet anyone?!) Unfortunately beta blockers make person B's situation worse in terms of reducing cardiac output further and increasing vascular resistance, although they can make the actual numbers look better. I am still looking for the answer myself. Something that helped me greatly but wore off after about a year was licorice root capsules by Swanson - they boost blood volume. Best wishes, B xxx
  3. bombsh3ll

    CSF leak?

    I recently had to put together a collection of my medical info for disability, and I was reading over my hospital letters, did a bit of thinking and online reading and came across a very interesting presentation by Dr Ian Carroll who spoke at the dysautonomia international conference on CSF leaks. I have EDS (only diagnosed after POTS, lifelong weak collagen/weird surgical issues but nothing disabling so wouldn't have seen geneticist otherwise), and was COMPLETELY well until a very forceful Valsalva (blowing up a water bomb I thought was a balloon) at which point life as I knew it ended instantly, and I could no longer stand or walk without passing out. Along with this came severe nausea and a splitting headache and neck pain whenever I was upright, yet lie me down and my old personality, IQ & light behind my eyes are back within minutes. Like everyone on here, I would so love to find a treatable cause for my POTS. I was tested for Sjogrens due to dry eyes and mouth but my lip biopsy was normal. I have seen 2 neurologists and a neurosurgeon and repeatedly expressed concern that the Valsalva could have caused HIGH intracranial pressure, but none of them (nor I to be fair - I am a GP) ever considered the opposite possibility, that I could have triggered a CSF leak with LOW intracranial pressure. Dr Carroll's talk went into detail about a number of POTS patients actually having this, especially people with connective tissue disorders like EDS. I know that EDS is associated with OI generally, attributed to lax vessels that don't constrict, but surely that would come on gradually, not instantaneously with one event that is a recognized trigger for spontaneous CSF leaks. There is another video on Youtube by a young lady called Kristin Ann who had POTS and turned out to have a leak and was fixed by this guy. Her symptoms sound like me to a T. None of the standard POTS medications have helped me either. I know this is probably clutching at straws, but has anyone else here had, considered or been tested/treated for a CSF leak? I would love to hear your experiences if you have or know somebody that has. B x
  4. bombsh3ll

    Low aldosterone & low sodium

    I don't understand what florinef has to do with latex. I would speak to your doctor for reassurance but I am sure they are aware of any allergies you have. Also if your allergy just causes a rash, there is no reason to think that something with no connection to latex whatsoever would cause worse. You could always take an antihistamine before the first dose, or go and take your first dose at a medical facility. Unfortunately I haven't found anything else that's helped after the licorice root wore off, but it is an alternative for you if you end up not being able to take the florinef & it really made the toddler stage with my daughter much more enjoyable. I still couldn't stand in one place but I could WALK, & sit comfortably. B x
  5. bombsh3ll

    Low aldosterone & low sodium

    Hi Potsiebarbie, I am similar, normal cortisol but undetectable renin, aldosterone well below bottom of lab range yet sodium usually low end of normal despite salt loading. On paper, florinef looks like the perfect fix for me but unfortunately it didn't help & caused intolerable side effects, but most hypovolaemic folks with low aldosterone seem to do great with it so don't be put off! What did massively help me for a year or so until my body got used to it was Licorice Root (Swanson's caps, 2 per day) which basically does the same job but without the side effects. With florinef, my advice would be start on a very low dose and build up gradually, don't expect instant results as it can take weeks to show effect, take after food if you have a sensitive stomach, and make sure to get your electrolytes checked regularly - it can lower potassium. Best wishes I hope it gets you back on your feet! B x
  6. bombsh3ll

    Why are doctors like this...

    Hi Derek I am sorry you are going through this. It is bad enough being unwell without having to deal with all the financial stress and having to prove your illness that goes with it. I am currently going through the same process in the UK. In order to get my pension released early on disability grounds, I have to get a specialist to commit to saying my condition is permanent. The problem is they are so lacking in knowledge they are looking up POTS and seeing that some people recover - yes teens who get it during a growth spurt might, but women with underlying connective tissue disorders who get it in their 30's don't. It is so frustrating and I hope you get the financial assistance you need and deserve soon, and with as little a fight as possible, but at the same time be prepared to put up a fight. Educate yourself, keep copies of all medical letters, test results etc. Best wishes, B x
  7. Hi Catlady, This is absolutely "normal" in dysautonomia and many if not most of us find we no longer tolerate alcohol. It is dehydrating and vasodilating, and can cause orthostatic intolerance and passing out even in healthy people. The way I see it is I am not denying myself a wanted treat, I am avoiding something that directly makes me feel even more unwell. For me it is the same with caffeine although some people do tolerate & even benefit from that, but for me it is a strong diuretic. It doesn't affect my social life personally as I am housebound, but good friends should understand and not put pressure on you to drink. B x
  8. bombsh3ll

    IVIG in the UK?

    No, but (health board funding dependent as I live in Scotland) I will be going back to the autonomic unit at UCLH in the next few months for relevant POTS autoantibody tests. I asked about IVIG, they don't use it but wait for it... if positive they may offer PLASMAPHERESIS which is safer, probably more effective, & often requires placement of a central line so you would be much likelier to be able to get additional IV saline!!! Not getting my hopes up because I have EDS & no sign of any autoimmune disease, but I was blown away at the thought of accessing this in the UK! B x
  9. bombsh3ll

    Tilt table test. POTS or OI

    There are many different medications that have been used with success. If possible I would try and see an autonomic specialist, they would be better placed to treat you than a cardiologist who doesn't understand the condition. It is important though, if you have not already done so, to exclude alternative conditions such as Addison's disease, diabetes insipidus, phaeochromocytoma etc & for that reason seeing an endocrinologist or generalist would be a good idea. There are a number of treatable conditions that can mimic or present similarly to POTS. In the meantime, as well as the above lifestyle measures, one thing I found that massively transformed my quality of life for about a year was Licorice Root capsules. I think these are mentioned on the "what helps" page of Dinet. I take Swanson's brand, 2 x 450mg capsules daily. They can be bought from Amazon & various health food stores. With these, make sure you get the kind with the active ingredient glychyrriza in it. Some brands of licorice have had this removed - these are labeled DGL- and are ineffective. Exercise, if you can tolerate it is also beneficial in minimizing deconditioning which makes things worse for us. I use a recumbent bike. Best wishes, I hope you get some medical help soon. B x
  10. bombsh3ll

    If you have too much adrenaline read this

    I'm glad you're getting checked for a phaeochromocytoma - everyone with POTS or similar symptoms should have this ruled out. Blood or urine catecholamine levels are also important. I think we all hope we've got one as if you have it is CURABLE! B x
  11. Do you just take it at bedtime then? I find a tiny dose before bed very helpful in getting a full night's rest and feeling less dehydrated in the morning. It doesn't help me stand any but it does improve my quality of life. I would be worried about taking it during the day due to potential hyponatraemia, particularly as I don't produce renin or aldosterone & don't want to have to fluid restrict. Also do you take the nasal spray or tablets? Even one spray was far too much for me - I didn't pee for nearly a whole day and my BP went very high. I split a 0.2mg pill into 6 so take about 0.03mg which works but I believe my body is very sensitive to it due to having no production of my own (except when being infused with hypertonic saline for the test which isn't the case in daily life). B x
  12. This is a major issue for me and I am waiting to have a CSF leak ruled out, however I understand a significant proportion of POTS & other dysautonomia patients get orthostatic headaches in general, which are only present when upright and relieved by lying down. I would be really grateful if you can vote to give an idea of how common this symptom is in a dysautonomia population. Note if you get headaches but they are not related to position, please select "no". Thanks so much, B x
  13. Yes this is a concern for me being chairbound as immobility raises the risk for clots. I do take low dose aspirin, obviously hydrate tons & use a recumbent exercise bike which I hope will mitigate the clot risk. I am guessing it is the Mirena you have? I've thought about this too, it might be a good fit ie no or little bleeding but still the monthly hormone fluctuations if it didn't suppress ovulation. B x
  14. bombsh3ll

    Bit TMI but, bathroom troubles

    Something else I thought of - on another site I read about someone who was drinking gallons of an electrolyte sports type drink for hydration which turned out to have an artificial sweetener in it known to cause diarrhoea. If you are using anything like this check the label for sorbitol or other artificial sweeteners. B x
  15. bombsh3ll

    Bit TMI but, bathroom troubles

    Has it helped? B x
  16. It's interesting that some people find IVs more effective run slowly. I can only get them occasionally & have always had a litre over about 1-2 hours for logistical reasons. Also, I thought getting it in quicker would be better in order to try and exceed the rate at which I pee it out, but even then most of it is in my bladder before the bag is done so I may as well be tipping it directly into the toilet. Maybe next time I will try a longer infusion period.. Perhaps retention is improved at a lower rate. B x
  17. If you can access it there, Ivabradine may be a good option for reducing heart rate instead of a beta blocker. It doesn't reduce BP or cardiac output like beta blockers do. I haven't tried it as I tend to have a low resting HR but have heard good things from other patients who have tried it. I couldn't tolerate beta blockers at all, made me pass out more. Good luck with the cardiologist. B x
  18. Hormonal BC pills can help by expanding blood volume through fluid retention as well as reducing/eliminating bleeding. Experiences with POTS seem to be very variable, some love them some hate them. I've been on continuous combined hormonal BC since long before developing POTS & have considered stopping it to see if I improved - my periods were heavy but not that frequent & I remember I seemed to retain fluid premenstrually, so I have wondered if my natural cycle might give me some good days vs all bad, but haven't been brave enough to try. How long have you been off them? If it just a few days it may be worth giving it longer until your natural hormones kick back in, but if it's been weeks then it may be worth looking at another brand perhaps. What side effects did you have? I can't imagine many that are worse than POTS! B x
  19. I had no luck getting it from an endocrinologist either following two hypertonic saline tests for DI. One was inconclusive, the other negative. Endos are usually only familiar with this indication for it and are not experienced in autonomic disorders. The one I saw diagnosed "psychogenic polydipsia" - for following the fluid intake advice of the specialist who diagnosed my POTS! An autonomic specialist would probably be of more use in prescribing it for this indication, however it is important to have DI ruled out first. There are a couple of research studies that you can find & print out by searching for desmopressin & pots also desmopressin & orthostatic hypotension which may help you argue the case for it. B x
  20. bombsh3ll

    Brand New - Have a Couple Questions

    No it wouldn't, but I would expect the mayo to have tested your catecholamines in either blood or urine, although they may not have done if POTS was only considered after you left. You need to confirm that this has been done though & get your results. If catecholamines were high, it certainly doesn't mean you would definitely have one, but an abdominal scan should be arranged to look for one. I got pots at 34. Prior to that I had fainted a handful of times in my life, first time age about 12 & usually with a trigger such as watching surgery during medical school, or being pregnant. I was completely well in between though. B x
  21. bombsh3ll

    Brand New - Have a Couple Questions

    Hi AutoDrive2000, That's a bit bad they didn't offer you a face to face follow up appointment to discuss your results. Will you get a copy of the blood and urine tests you had? It is great that you've had your heart checked out & sleep apnoea excluded. Other common things to exclude that have probably been done are anaemia, thyroid problems, autoimmune screen and catecholamines. The latter is to exclude a pheochromocytoma (adrenal tumour that secretes noradrenaline & related hormones). It is commonly done as a 24 hour urine collection but can also be done as a blood test. Blood catecholamine levels are sometimes done lying and upright eg at same time as the tilt test to see how they increase with posture. Other things would depend on your personal and family history. If you were very flexible as a child or have had joint, skin or surgical complications, testing for a connective tissue disorder is sometimes considered. For example I have Ehler's Danlos Syndrome (weak and stretchy collagen) that can affect various body functions & is considered to be one cause of secondary POTS. I also had a lip biopsy to exclude Sjogren's which is an autoimmune disease that can cause POTS. I didn't have that. Not everyone gets tested for that especially if general autoimmune bloods are negative, but it tends to be considered in younger females with sudden onset/severe POTS especially if they have dry eyes and mouth (I do). I hope you manage to see a specialist soon. It seems a shame to go somewhere with the fantastic reputation of Mayo and come away with just salt water and compression socks, which anyone who can use google can find out! Do try the compression though and get chugging, both of those things do help me albeit minimally. The most important thing I would say though is move as much as you can. Don't get deconditioned if you can help it as it makes POTS worse (although I do not believe in the slightest that deconditioning causes POTS in the vast majority of cases, as has been postulated by some.) B x
  22. bombsh3ll

    Brand New - Have a Couple Questions

    Hi AutoDrive2000 & welcome (although I am sorry you find yourself here). Yes, to me your TTT results are typical of POTS. I too usually have quite a low supine HR & my uprights don't go much higher than yours, but it is the 30+bpm increase, plus the symptoms of orthostatic intolerance that are diagnostic of POTS. I think at the time you went to Mayo, if fatigue was your only symptom and you had no problems with syncope/presyncope/lightheadedness/chest pain/sense of non-psychogenic anxiety/tremulousness/uncomfortable tachycardia or palpitations etc etc... in the upright position, you may not have strictly met the criteria but it sounds like you do describe some of them now. Were you given any treatment at Mayo or any other tests to rule out other conditions or underlying causes? I live in the UK so have no experience of US healthcare, but what matters about choosing a specialist (if you can), is to seek someone who is familiar and experienced with treating dysautonomia patients, not just any old cardiologist UNLESS they are particularly receptive to reading up on the current research and work with you to try out various approaches. I would take someone with little or no initial knowledge but interested and willing to learn, above someone who may have heard of POTS, treated a couple of patients & thinks beta blockers are the be all & end all & won't entertain anything else - particularly with a low resting HR! Best wishes, B x
  23. bombsh3ll

    Orthostatic headaches? Please vote!

    I would love that, I seem to have tried pretty much everything already but do you mind sharing what you take to get vertical? B x
  24. bombsh3ll

    Levine Exercise Protocol

    I am looking forward to trying the rowing machine! I had another good workout on my bike last night, however became very unwell about an hour after it which was a real blow. I managed my prescribed time & HR zones, felt OK during & really proud afterwards. I'm always lightheaded when I crawl back into the house & into my recliner from the bike in the garage, but usually feel my best all day once I have recovered. My husband and I watch TV for about an hour then get ready for bed. All was fine until I got up to get ready for bed, this is usually my most functional time of day, I get the kids' things ready for morning etc, but last night I was really hot & presyncopal, & my HR was up in the 130s. It settled to under 100 when I got in bed, and by the time I checked my BP then lying down, it was 127/83 which is about normal for me but high for lying down. My heart continued to pound all night with horrible adrenaline type feelings & I got no sleep at all. I didn't think I was going to be able to get up this morning, but I did, & my HR is back in its normal range, but I still feel a bit worse than my usual presyncopal, splitting headache state. This didn't happen after my first intense Levine protocol workout & was unexpected. I have heard people say exercise makes them feel worse in the short term & it is to be expected, but they seem to mainly be referring to fatigue which wouldn't bother me & I don't really identify with as a symptom - how does a chairbound person get fatigued?! but I didn't know to expect worsened presyncope, tachycardia, shaking etc. I had eaten a snack when I came in so wasn't hypoglycaemic. I am guessing this was probably post exercise hypotension/vasodilation, which I read about and seems to be a physiological response but obviously poorly tolerated in a POTS patient who is usually intensely vasoconstricted & clinically hypovolaemic. Did/does this happen to anyone else? I will be more prepared for it next time & have everything ready for the next day so that I can just go straight to bed after recovering watching TV and not expect to be on my feet at all afterward. I understand it is partially histamine related too and may also try taking a antihistamine before exercising. I would really like some reassurance that this is common & gets better. I had been so encouraged after my first Levine intensity bike session! B x
  25. After much research and self directed exercise on my recumbent bike since soon after POTS struck, I decided to try and obtain the "top secret" Levine protocol. Surprisingly after what I had heard, I had this within a couple of days - I think things have changed now the research has finished and they are giving it out much more freely without any registration process or exclusions. It turns out I have actually been doing the cardio part of month 1, nearly every day, for 4 years, but no weights or strength training (I had thought the bike would take care of strengthening my legs). Also, I am not sure I have been getting/keeping my HR into a high enough zone consistently when on the bike. I have therefore decided to start the protocol doing my best to achieve the intended HR zones, from month 1. I would really love to hear from anyone who is doing/has done the Levine protocol and how it went. In particular, ideas for strength training lower body exercises would be welcome as it basically gave instructions for gym equipment but just to do your own thing if you can't get to a gym (I am housebound & even if I could get to a gym would soon be banned for recurrent syncope!) B x