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Hi Yhoun and welcome - although I'm sorry you find yourself here. Whilst I was fortunate to have the first blessed 14 months of my youngest child's life healthy and active with her before my POTS nightmare suddenly began, she was still a baby, just starting to walk by herself at the time I lost the ability to & began also feeling very unwell, so I can definitely relate to that. It is awful feeling you can't be the parent you want to be, and that your child deserves, and being afraid of passing out and putting them in danger. What I would say is it sounds like you have hope of things improving if you've only tried two meds (there are lots of different options), and are breastfeeding. That in itself can be dehydrating and I have seen others say their symptoms improved when they stopped. My issue is definitely lightheadedness ie presyncope(about to faint), not dizziness in the vertigo/spinning sense. Some people on here seem to experience both though. Something I find helps a little is a litre of electrolyte mix prior to getting out of bed and another in the afternoon in addition to my usual gallons of fluid & salt on food (I recently discovered Trioral - taste isn't nice but does the job) which only contains salt potassium and sugar so is completely safe for breastfeeding. I wear class 2 compression tights. The biggest thing that helped me dramatically for about a year before the effects waned was Licorice root capsules. I take 2 x 450mg swanson capsules daily (can buy from amazon). I am not sure about these with breastfeeding, they are probably not advised (not due to any known harm but just lack of evidence they are safe), but something you could look into after that. I had been chairbound for 8 months and these allowed me to walk (not stand in one place, but at least be on my feet and moving) and sit upright comfortably with no or very little lightheadedness. The licorice root enabled me to get out with my daughter when she was little and go to playgroups and soft plays where I could sit and watch her. They also gave me a bit of a time loan in getting my kids to an age where they are more independent, can help me in the house and I can safely be at home with them without another adult, as they can get food & drink, use the toilet etc without me having to get up, and know how to call for help if I passed out. Safety wise, you have to plan things and have contingencies in place, for example I don't go out alone with my children. Rely on those who care about you who can and want to help. I read about another lady with severe POTS who had a baby, and when she was alone in the house with the newborn she set everything up so she could do it all on the floor, and used a pushchair to move the baby around the house rather than carrying her. Look into getting some kind of alarm that you could activate if you were unable to use your phone, get a relative friend or neighbour to call you at agreed intervals through the day to check you are OK. Try to enjoy the moments you can with your baby, the feeds & cuddles on the couch etc. Hold on to the fact she will not always be as dependent as she is now, and as time passes regardless of your own health you do at least gain more and more peace of mind regarding your children as they get older. Mine are now at school getting activities and social interaction & a life outside the home that I wouldn't be able to provide. Whilst I would have chosen not to have children had I known I was going to become disabled when they and I were young, we are where we are and can only do our best. I might not be able to go for walks or bike rides, but I can do stories, cuddles, movies, help with homework etc. Focus on the value you do bring to her life, not what you can't do. I hope things improve for you and you find something that brings some symptom relief. B x

Yes I agree you should see someone else. That doctor sounds like she lacks compassion and it is often those with least knowledge who label things they don't understand as psychosomatic. It is established fact that large meals and those high in carbohydrates can worsen orthostatic disorders as more blood is diverted to the gut for digestion and away from the central circulation, worsening POTS symptoms. Also the amount of fluid & salt we take can lead to nausea and reduced appetite. I have certainly come to hate eating since developing POTS whereas I previously loved my food! Whilst I am not sure about particular foods affecting POTS in general, that doesn't mean you personally don't have an allergy or intolerance. I have also read a number of studies indicating altered GI transit in POTS and EDS, albeit not in all patients. I have always had reflux and slow transit (I have EDS) long before developing POTS. In the meantime perhaps you could see a dietician or start a food/symptom diary to identify particular patterns. Often "treatment" is simply avoiding the culprit foods anyway. On the other hand, it could be a positive in a way that your symptoms vary with food, as this leads to the possibility of using this as a tool to control symptom severity. I think from the doctor's point of view though, and I'm not defending her manner, but she probably also sees a lot of healthy but neurotic people who are very picky about what they eat and consequently develop POTS like symptoms and fatigue as a result of malnutrition. It is just a shame she is not able to differentiate someone with genuine illnessess ie the zebra among the horses. As for POTS being benign, how would she like to not be able to stand or sit up for long without fainting?! B x

That sounds like a horrible experience with your husband at the hospital. He doesn't sound like he does very much for you at all, and actually you are probably a lot more vulnerable with him than without him. If you had been able to transport your scooter, your trip to the hospital would have probably been a lot more manageable. Couldn't one or both of your older children help load it onto the trailer? I don't think I would let the fear of another woman seducing him prevent you from accepting help from a female friend. It doesn't sound as if he has many attributes that would make him appealing in the first instance, but if he did leave, it may end up being the best thing that ever happened to you. You would probably be a lot better off alone with your kids, especially as two of them are practically adults, than with all the extra stress and burden he is causing you. In practical terms, I can't walk far either, or stand in one place at all. I have a rollator for short distances, and a self-propelled wheelchair for longer trips. I can lift both in and out of the car myself, but the wheelchair is heavy. If I go out with my family, I walk pushing my wheelchair as much as I can. It doesn't bother me what people think - they wouldn't get out of bed if they were me. The good thing about the wheelchair is that when I need to sit in it, I can continue where I am going, either propelling myself or being pushed. The rollator is light though, and folds easily into the boot of our small car. It sounds like just the thing that might help you for hospital trips like that where you can walk a bit but need frequent sits. The downside though is when you park and sit, that's where you are until you can walk again. You can't wheel yourself in it or be pushed by someone else. If you wanted to look at this it is called drive nitro. I don't think having them has led to any worse deconditioning, because my wheelchair has allowed me to go places and walk a bit that I wouldn't have been able to at all without it. Take care, B x

It is such a shame we face attitudes like this and have to "justify" using a mobility aid. Like anybody wants to have to buy a wheelchair, just for a laugh! B x

Hi pobarjenkins and welcome! Regarding my own experience with POTS, I have lived with severe POTS for a little over 4 years (I have Ehler's Danlos Syndrome but lived a full and active life before POTS & was only diagnosed with it after POTS) In terms of my main POTS symptoms (listed in order of most to least significant) mine are: severe orthostatic intolerance due to presyncope/syncope, constant lightheadedness, headache and chest pain. The latter two are variably present and relieved to a degree by painkillers and benzodiazepines, the first two constant and relieved only by lying down. I get nausea often (in association with feeling presyncopal) and vomit occasionally. I have never experienced any double vision, eye rolling or loss of control of any body part whilst conscious, nor had any witnessed seizure like activity. It is possible you have another condition either in addition to or perhaps misdiagnosed as POTS - examples could be an atypical form of migraines or seizures - and it would be best to consult a neurologist for further investigation. Most things dysautonomia aren't really treatable, but you may just have something for which there is a good treatment that could significantly improve your quality of life, and getting a diagnosis would at least give you some peace of mind. B x

Hi Clb75, I'm sorry the Northera didn't work out for you. Have you ever had your catecholamines tested? I think Northera is probably best for those who under produce noradrenaline, and based on my symptoms of sympathetic excess I don't feel I am in that category either, although I have yet to have mine tested. Thanks for taking the time to report back on your experience. I think it is always worth trying something even if just to cross it off. Bx

Lieze i am so sorry for what you are going through. I understand how difficult it can be dealing with insensitive, and in your case it sounds like downright selfish, family members. My husband has been very supportive but I know it wears him down. My dad is also 78, he has features of EDS which i clearly inherited it from but he 's never really had any limitations from it, and he really struggled to accept my illness for the longest time. He helps me a lot practically, but I pay for it in terms of upsetting comments & frequently having to 're-explain my illness. I think sometimes we just have to be blunt and protect our fragile bodies and hearts. If your dad can date, he can probably shop & do his own chores too. Your kids are certainly of an age they should be helping you, not letting you go alone to buy all their food etc on a mobility scooter. i would feel ashamed if i were an able bodied youngster expecting my disabled parent to do that. My little two are 9&5 they do age appropriate things in the house to help. Your husband's threats to divorce you for being unwell are cruel - do you get anything out of a relationship with someone like that aside from financial security? It may be worth just for some peace of mind finding out where you would stand in terms of settlement - you may just be needlessly living in fear of something that to an objective outsider would look like a blessing rather than a catastrophe. I hope you can make your family see they are being deeply unfair. You aren't being unreasonable at all, & you didn't ask for dysautonomia. Another basic thing sorry if you've already tried or it isn't available where you live, but I'm largely housebound & order in all our food& household items online. If I have to be disabled, i am thankful to God that we live in a time with such technology. Imagine being like this 30 years ago, no diagnosis, no online anything, never connecting with anyone else in the world with the same disease as you, or even knowing there was anyone else with it! I hope this makes you feel a little less alone. Look after yourself, B x

Honestly it is so worth getting it, a slightly sore arm for a couple of days is nothing to dysautonomia warriors like us! B x

I always get mine. The last thing you want with POTS/dysautonomia is the flu. I've never had any side effects from the vaccine. B x

Hi I just recently tried Trioral sachets as opposed to the pleasant tasting but expensive supermarket ORS sachets. Even after shipping to UK and customs, it works out much better priced - I drink a litre twice daily. Problem is - it tastes foul! I know that having had to stop work, my family are making lifestyle sacrifices due to my reduced income, and feel like it's only fair that I switch to the £1 per day rather than £4 per day product. I've tried adding blackcurrant diluting juice (the supermarket sachets I like are blackcurrant flavoured) but the effect just isn't the same. Wondering if anyone else uses Trioral and if you have any tips for making it more palatable? B x

Hi Megann, I have POTS and I have all the symptoms you describe apart from seizures. Checking your orthostatic vital signs and keeping a record to present to your cardiologist is a great idea. I would also tell the cardiologist what you have learned about POTS and why you think you may have it. This is not telling the doctor their job, it is providing useful information that will help guide the consultation. As a doctor myself although no longer able to work, I always found it a good thing when patients said what was on their mind if they were concerned about a particular condition rather than keeping quiet and hoping I'd read their mind. Of course, the patient may not be correct, but at least their concern can be addressed and reasonable conditions ruled out. Not every cardiologist is aware of POTS, certainly I had that problem myself when my tilt test was reported "normal" because my blood pressure didn't drop, but a good doctor will be open to learning and/or referring you to an appropriate specialist. Best wishes, B x

It could be, but is complicated by your other issues and medication. Have you had a tilt table test done? Do you have any symptoms with your fast heart rate? What is your blood pressure like? A lot of patients with POTS seem to focus primarily on their heart rate, but to me what's always mattered is how I feel rather than numbers. My main problem is lightheadedness & presyncope. I know I have POTS because I've been tested (and now wear a Polar heart rate monitor) BECAUSE of my symptoms, but I would've never been checking my HR in the first place if I felt well. Also how bad I feel doesn't necessarily correlate with my HR. I think it is a good plan to see a dysautonomia specialist & hope your appointment is helpful. B x

Thanks for sharing your experiences - it sounds like each place does it differently! I can sometimes walk for 10 min but not stand in one place - I think the walking option for me is the best chance at getting an upright result even if it's not perfect. B x

Did you have it measured supine first and do you remember what that level was? B x

I have to say I do not like the term "functional" particularly when used by neurologists. It carries vaguely offensive connotations and is often used or interpreted to infer the patient's symptoms are psychogenic. When I was a young and healthy medical student, I remember such terms being bandied about with a bit of a wink and a snigger, along with "supratentorial" or "non-organic". I suspect a lot of things currently assigned such descriptors will, as science advances, be identified as having defined underlying pathology, similar to how epilepsy was misunderstood in previous centuries. B x

Nothing really worked for the headache for me other than stopping it, however I had no benefit from it to weigh up against. I very definitely experienced splitting headaches within hours of the first dose, so if your daughter's already started taking it and has no headache, she may not be one of the people who gets this side effect at all. Starting low and building up the dose slowly are also advocated for minimizing headaches. I hope your daughter does well on it! B x

Was that at Dr Grubb's clinic? If so it might help me argue for a similar adapted test in London. At least your supine levels alone gave useful information in that they were elevated. I've decided definitely to ask for walking or at least independent standing. I have an absolute phobia of being strapped to another tilt table, that was the worst experience of my life when I had it done in Edinburgh, and it was of no benefit to me whatsoever as it was reported as "normal" despite a HR of 154 and BP of 170/110. They then deleted the test data (or said they had) so I couldn't take it elsewhere for a second opinion, delaying my diagnosis of POTS by another year until I got to Prof Newton. B x

So it was 10 minutes standing to get the upright bloods, that was enough? If I do get the funding to go back to London for the test I'm going to ask if they can be more flexible and allow me to walk about a little bit in order to have a better chance at being upright for 10 minutes. Some places like their very rigid protocols though! Do you remember how much your NE went up by? Symptomatically I feel that mine is high even sitting and rockets if I try to stand, and I would like to capture that, but I am not sure it would lead to any new treatment options in my case as I've already tried pretty much everything (NHS won't treat POTS with IV fluid). B x

Thanks, I think the consultant said less than about 10 mins isn't usually enough. I'll give it all I've got though! I just wish it hadn't taken so long to get to see an autonomic specialist - earlier on in my illness I may have been able to stand for longer, especially when licorice root was still working for me. I've thought about asking if I can walk about instead of being strapped to a tilt table to get the upright blood test as I may be able to do that for longer. I know when I was at the hospital getting renin and aldosterone levels, they asked me to stand for 15 minutes. I pointed out that if I could stand for 15 minutes I wouldn't be in a wheelchair, in fact I wouldn't even be there, I'd be running about somewhere jumping for joy! B x

I'm sure disorders of CSF pressure in either direction can create problems, in fact I repeatedly expressed concern about HIGH intracranial pressure. I have been for repeat eye exams to exclude any signs of this. I am angry that the neurologists and neurosurgeon didn't pick up on the fact that splitting headaches when upright relieved by lying down are characteristic of a spinal leak & consider this possibility, especially when the patient is mentioning intracranial pressure (albeit the opposite concern), and has known risk factors - EDS, precipitating Valsalva. Maybe I don't have it, but the diagnosis should be considered and excluded, rather than nobody having thought of it. It wouldn't be OK to go to hospital after a car accident with severe leg pain and unable to walk, & nobody thinks of or looks for a broken bone. Many people won't have one, but it should be ruled out. I also don't buy it about lax blood vessels - surely this would have come on gradually. I would have had lax vessels at 16.55 on the day I fatefully blew up that water bomb, not just since 17.00 when it happened. Also my dad who also has EDS is 78 and has awful varicose veins and an aortic aneurism, & he can stand up! B x

I'm so glad you're having positive results from the fludrocortisone increase (and rather jealous!) I am sure the drug's onset of action really is that quick, as that is the time frame in which it makes me feel awful when I have tried it! Hope it continues working well for you! B x

Epinephrine is meant to be low, and having readings below the threshold is unlikely to be clinically significant. It is good in a way as it helps rule out a phaeochromocytoma (although actually most of us would probably prefer an operable cause!). Your Ne rise is consistent with POTS (possibly Hyper dep on your center's criteria). I am on the waiting list in the UK to have supine and standing blood catecholamines drawn if I can get health board funding. The problem is I can only stand (or tolerate tilt) for a minute or two, so the doctor didn't think this would be long enough to meaningfully detect a change. Can I ask how long you were upright before your standing bloods were drawn? I hope your results point you in the direction of some helpful treatment. B x

It's great hearing about people who were finally cured of a debilitating illness when they just found the right diagnosis! I could be clutching at straws- don't we all long for a treatable cause to be found - but I am determined now to be fully evaluated for this. I know it probably isn't relevant to a large number of people but having EDS, onset triggered by forceful valsalva, splitting headaches when upright relieved on lying flat - I emailed Dr Carroll & he thought I had a good history for a spinal leak. Problem is very specific myelography imaging, read by someone experienced in this field is needed to accurately diagnose it, & even then it can be missed. I'll have to wait a while to see the neurologist I've been referred to re this, & I'm gathering info to argue my case for the right investigation. This study is interesting https://journals.sagepub.com/doi/10.1177/2515816318773774 B x

Yes it's hard having kids as a non-upright person! How frustrating that your specialists don't agree. Have you ever had a CT myelogram to look for spinal leaks? This seems to be the test favoured by Dr Carroll. I've been referred to Dr Tyagi, an NHS neurologist in Glasgow who has at least heard of CSF leaks/spontaneous intracranial hypotension, but I am not sure if the CT myelogram is available in the UK. If I don't get anywhere on the NHS I plan to try and get to Stanford to see Dr Carroll. What type of EDS do your family members have? I am diagnosed as hypermobile type based on Beighton score, but have never had genetic testing. I understand the other types have genetic tests but there isn't currently one for HEDS. B x

How awful it sounds like you've been through a lot! Is your leak cranial then if the fluid runs down your nose? Was it caused by surgery or spontaneous? I do hope you can get some relief. It is encouraging that blood patches helped even if transiently. B x