bombsh3ll
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Posts posted by bombsh3ll
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A non-SSRI may be safer. Mirtazapine may be an option to ask about. I took it for sleep and nausea (it is a potent antiemetic but only licenced for this use in veterinary medicine however no human licenced antiemetics helped me) when I first became unwell. It helped me regain the weight I'd initially lost, however I believe my weight loss at onset was fluid, and mirtazapine put it back in fat rather than fluid. I was underweight though so it was still appreciated. I would go back on it if I drop below 50kg again. If weight gain would be a bad thing for you though, it may not suit you.
I also tried sertraline (no cardiac meds) as anecdotally SSRIs have been postulated to help in autonomic disorders. I think I was on 50mg. It made no difference, good or bad. I don't consider myself to be depressed as I'm pretty cheerful lying down! I am sad sitting up purely as a normal response to feeling so unwell and having a limited quality of life, just like anyone else would be, so I don't wish to take psychiatric medication.
I am sure you've already had a bunch of ECGs as a baseline so I wouldn't worry too much there but I would definitely seek one after a couple of weeks to check for any changes if you do start on the a/d.
B xxx
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Often it is just a case of suck it and see with meds. Unpredictable. Whatever you try I would start with a tiny dose and build up, also only try one new thing at once so that you can see what effects good or bad it is having.
Mestinon did nothing for me except mildly help my constipation, but there were no negatives other than it didn't help.
I've done the fludrocortisone dance a few times, a concern with this for me and possibly for you as you mention high spikes in BP is that it can worsen this.
Make sure you discuss BP tracking with your doctor, and go up slowly. If you don't already have a home BP machine and are starting fludrocortisone it would be a good idea to buy one.
I use shop brands of dioralyte too - normally 2l per day but off it presently until my potassium stabilizes as I recently stopped licorice root and my potassium is raised (I am mineralocorticoid deficient).
A money saving tip as the electrolyte sachets are pricey which I have found is to make up half and half with Trioral (an unflavoured, cheaper alternative which tastes vile on its own).
That way it is still palatable and easier on the pocket.
B xxx
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3 hours ago, Christinvme said:
low bp at night only. When laying down 90/50. No clue why.
This is not necessarily abnormal unless it is a sudden change from your usual. It is part of a healthy person's circadian rhythm for the BP to drop at night for sleep, it is called dipping, and it is the "non-dippers" that are considered pathological.
My lying readings are similar and were the same prior to POTS.
B x
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It helps me with nausea although that's not the primary reason I take it. Doesn't help with motility. What effects did you get?
Valium is my favourite med as it helps dampen the chest pain and horrible non-psychogenic sense of anxiety. It also calms my BP spikes as I cannot take BP lowering meds.
B x
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If you pee an inordinate amount and/or have symptoms of hypovolaemia (google hypovolaemic shock) like many with POTS, an evaluation by an endocrinologist may also be valuable. I believe that in most POTS cases the tachycardia on standing is compensatory for a reduced central blood volume & cardiac output. This can be due to either overall hypovolaemia like in my case, or blood being unavailable due to pooling in the lower body.
Blocking it just to make the numbers look better makes no sense and can certainly make things worse. Also one's heart rate does not necessarily correspond to how well/unwell they feel. A high heart rate on its own with no symptoms, provided the rhythm is normal and the heart is structurally healthy & underlying causes such as thyroid disease etc are ruled out, is not necessarily an illness or requiring treatment.
B x
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On 2/25/2019 at 2:16 AM, nomdeguerre said:
When we were discussing, I brought only one or two of the best, most current, well researched scientific articles I had found on Google Scholar. I highlighted who had done the studies, when, results, and maybe two or three relevant sentences. We did a trial to see if IV saline would help before we made the decision to place a PIC line.
Are you able to share a link to this info?
Many thanks.
B x
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Hello and welcome!
I'm sorry you're struggling. If you only had mild symptoms & could live a normal life then medication may not be worthwhile in your case. I would go back to your doctor and discuss coming off the beta blocker. If you still feel you want something to lower your heart rate (& I personally wouldn't so long as the rhythm was normal and it wasn't causing symptoms), you could ask about ivabradine which lowers HR without the side effects of beta blockers.
B x
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I don't know about the US but here in the UK a GP's letter would suffice to get you excused completely. I used to do them all the time. Yes I too used to hope to be picked, but would now not be able to go either unless they provided me with a reclining wheelchair and attendant.
B x
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Would it be possible to get a referral to one of the large specialist centres that deals with dysautonomia?
B x
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On 3/7/2019 at 11:36 PM, Derek1987 said:
This is hard. I hope the disability process goes quickly as possible. My wife had to wait 3 years for hers. She has bone/nerve problems. And now that she's gotten approved, my body finally just broke down at the right time I guess lol. I pushed through sickness I didn't even realize I had. We are both in our 30s on senior citizen status.
It is hard to be chronically ill at this stage in life, when parents are too old to care for us and we ought to be out earning a living. I'm sorry your wife is also disabled, that must be doubly hard although possibly results in a shared empathy & understanding that can be lacking in a disabled/healthy partnership. My husband is an absolute saint, but still gets frustrated with me at times for not being able to do things, & I sometimes resent him for taking the ability to do them for granted.
Do you have any children? We do, and I am torn between being grateful I was able to have a family before becoming ill, & heartbroken for them growing up with a mother who is so limited & missing out on so much because of me. I wouldn't have had children if I'd known this would happen.
Anyway I hope your disability claim goes smoothly and you get the security you need and deserve.
Take care,
B x
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It is a hard condition to treat but we all need and deserve someone to work with us, follow up and try different things. There ARE many treatments out there, which work for SOME people, and you won't know unless you have the opportunity to try them.
I have been completely on my own with it as well since 2014 - I am a doctor (GP) in the UK but had to give up work due to severe POTS. I have been lucky enough to access most of the available treatments however none has helped although licorice root was absolutely miraculous for about a year until the effects wore off.
Keeping moving as much as you can helps - I cannot exercise upright but use a recumbent bike. Also hydration, I use Trioral ORS sachets, but stopped consuming large quantities of salt as is commonly advised, as it never helped me & there is no scientific evidence chronic salt loading produces lasting increases in plasma volume - it is simply urinated out, tastes vile, suppresses the renin-aldosterone axis and causes damage to blood vessels over the long term.
I hope you manage to see someone worthwhile for ongoing care, even if they don't know much about dysautonomia to begin with, being willing to learn and work with you are what matters.
B x
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There is a genetic test for every type of EDS except the hypermobile type currently. HEDS is diagnosed based on clinical examination including Beighton score and symptoms alone.
That may change in the future. Stretchy skin could also fit with the classical type.
Because of my dad's presentation (although being alive at 78 would be very rare) & son's facial features, I took a genetic test to exclude the vascular form of EDS which fortunately came back negative. I don't have any features of vEDS myself & POTS/orthostatic problems never seem to be mentioned with it either. The symptoms within a family can vary greatly but the underlying gene present in affected family members is the same.
The genetic test I had was with INVITAE where you send saliva, if anyone is interested.
Regarding the blood pooling theory though, I'm not sure about that. I don't believe I have blood pooling, I've no swelling, discolouration or varicose veins & feel my problem is hypovolaemia ie not enough blood rather than an ample quantity that is collecting somewhere it shouldn't!
How do you identify blood pooling if you have it? I know there is one specialist place in the US that performs some kind of supine and upright isotope haemodynamic scan to see how your blood distributes, but are there physical signs that you can see or feel?
B x
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I'm sorry you've found yourself in this place, but at least there is some consolation in getting support for your disability case. The way I see it, my condition and the severity of it are what they are, and giving up work, receiving disability benefits, using a wheelchair etc make things easier for me, not worse if you see what I mean.
Just know you are not alone in this.
B x
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16 hours ago, JimL said:
I've asked about PNS and carcinoid and I get the you're crazy look.
There is an alternative test for carcinoid, a blood test called chromogranin A which you could look into. I don't know about the US but you can obtain it privately here in the UK for about £169.
I am considering it in place of the urine 5-HIAA which I would have to travel to London for and stay somewhere overnight as it is a 24 hour collection. Also producing an abnormally large volume of urine could render it less accurate for me, not to mention having to ask for multiple containers like I did for the pheo test!
B x
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8 hours ago, StayAtHomeMom said:
I don't think I have ever had those issues. It is interesting though. I had to look up the first one. I wonder what causes that for you? Just not enough collagen in your skin?
Just generally weak connective tissue I think. To be honest my breasts had ballooned up to a G cup during pregnancy & it was my second surgery on them after that which wouldn't heal so I'm not too surprised the skin there is thin.
My dad has awful varicose veins, abdominal aortic aneurism (just monitored regularly, found on a scan for something else) and lost all his teeth through gum recession, though he did used to smoke.
EDS can have many different symptoms within the same family as connective tissue is present throughout the body, so which areas are affected can vary from person to person.
B x
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Wound dehiscence, thin, difficult to suture skin & a lot of intra-abdominal adhesions. Appendix which is normally done laparoscopically required extended midline laparotomy, 2 weeks hospital stay and TPN feeding until my digestive system started to work again.
This was all long before POTS.
B x
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On 3/4/2019 at 8:48 PM, daddysgirl said:
For example, she got me to quit smoking and start eating better.
It's just a shame they charge thousands of dollars for that.
One thing I would like to raise about this clinic that I have mentioned in another thread, (I am not saying it hasn't helped anyone and have no personal experience with them) is that one of their herbal recommendations that they give to patients is to take licorice root.
That was something I discovered early on in my illness which has fludrocortisone like benefits without the side effects, and it absolutely transformed my quality of life for about a year.
If someone went there and did all the biofeedback & relaxation etc and also started licorice root, it is quite probable that the licorice root alone is (temporarily) giving them their life back. It works very quickly (hours) and could account for a lot of the glowing testimonials from patients at the end of their visit.
I have also looked into heartmath and may try that device if the price comes down as I do think there is probably some merit in that but not in the league of the ~500ml boost in plasma volume that licorice root has been shown to induce.
B x
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My third 24 hour urine catch for catecholamines just came back normal (apart from the volume, 6 litres) which is normal for me because I don't retain fluids, but I have never had it checked for 5-HIAA.
That's a test for carcinoid syndrome by the way. It is a rare neuroendocrine tumour, usually found in the gut, that can cause wacky autonomic symptoms.
The good news is if that's what you have, it is treatable.
I would have to pay a lot for that test in the UK, and so far haven't bothered as it is so rare & I don't have other symptoms like flushing or diarrhoea, but I may just get it done to be sure. There has been at least one lady on here whose POTS turned out to be carcinoid. I think her name was Janiedelite & that her mother had it also. I don't know if she is active on the site any more.
I know it is scary but you could actually be onto something that results in an effective treatment for you!!
Good luck with your follow up, please let us know what happens!
B x
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No I've never really had any joint injuries but never did much sports. I did gymnastics as a young child but puberty hit early & the two don't mix.
Just tried the arm thing and I can't do that either. I really don't think hypermobility is a major deal for me despite the Beighton score which only looks at a limited range of joints. My left knee pops out at times, it's not painful & I just pop it back in. I've also had lifelong GI issues (easily managed with meds), obstetric & surgical complications which go along with EDS, but on a day to day basis nothing that would bother or limit me in any way before POTS.
I actually think there is probably a lot of diagnostic bias influencing the apparent relationship between EDS and POTS, creating a sort of self fulfilling prophecy.
There are a minority of EDS patients with severely painful and immobilising joint complications and/or severe GI problems, who may develop OI through deconditioning and/or malnutrition/dehydration. Maybe SOME of them have overly stretchy veins, who knows.
Then there are people with less severe EDS who are under regular follow up with a knowledgeable doctor, who either report or get asked about mild/infrequent lightheadedness when they stand up, and consequently acquire a diagnosis of POTS which of a similar severity in a non-EDS patient, would have remained undiagnosed and never really bothered them throughout their life.
The third group are probably people who sound like your family and mine, one or more individuals develop severe/life altering POTS and a hunt for a cause ensues. Either the patient or the doctor learns about the association between EDS and POTS, & because the patient is mildly flexible or has had some joint or surgical issue that wouldn't otherwise have been recalled, they are evaluated for EDS, turn up a positive Beighton score and get diagnosed with HEDS, which in the reverse of the above scenario would never have come to attention without the POTS.
So yes I think it is worth ruling EDS in or out, but the search for a cause and treatment for POTS shouldn't stop there.
B x
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Thumbs no, pinkies yes, feet twisting no.
Elbows yes, hands on floor yes.
I definitely think it would be worth you getting checked out.
Whilst EDS isn't treatable unless you need surgery, and nor do I believe it causes POTS, being diagnosed with it helped me retire on disability grounds as EDS is not reversible, whereas doctors are reluctant to state that POTS is permanent (despite mid-life onset and progressive course in my case).
This may hopefully never be relevant to you, however I definitely plan to have my son evaluated before secondary school, as contact sports are best avoided in EDS. (I always had a note or hid in the toilets so sport didn't come into it at school for me, I think I instinctively avoided it).
B x
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1 minute ago, StayAtHomeMom said:
He had his hand faced back of it down and had all of his weight on it. It was comfortable and didn't bother him. My husband pointed it out that it was weird. I shrugged. I do it too.
My son who I think also has EDS does that too! I can't, never have. It looks gross & makes me wince when he does it!
You can look up the Beighton scale on google with pictures and see what you score - 5+ out of nine is diagnostic. It doesn't include wrists though.
B x
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If I can stand long enough to get a BP reading, it tends to be high. I have POTS which is diagnosed on heart rate change rather than what happens to the BP. I also have random severe hypertensive spikes >200 which are not posture related - I have been investigated several times for a pheochromocytoma which was negative.
When I went to get diagnosed with POTS, I had a continuous BP monitor on my finger which recorded a large drop in BP in the first 7 seconds which then corrected & would never have been caught with an arm cuff, before it shot up.
Sometimes, you can get a drop then an overactive sympathetic response to compensate for it, which overshoots. This tends to happen if you are volume deplete (which I am) although the autonomic nervous system is a strange thing and can misbehave for many different reasons.
Perhaps you are getting a drop followed by an overactive compensation over a slightly different timescale so are picking up both low and high readings depending how long your cuff takes to inflate or how long it takes to settle.
Looking at a typical POTS tilt reading in a presentation by Satish Raj, the tilted BP readings were all over the place, systolic up to 200 at one spike, with generally much wider excursions from the baseline than the control patient. I found this comforting to know (although sorry for the patient!)
I tend to focus more on how I feel though than numbers - I never checked my pulse or BP before I was ill. If you are having symptoms, these are what your doctor needs to address if possible even if they are happy with your readings.
B x
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I am so sorry your son has POTS, the one thing I can imagine to be worse than having it yourself must be watching your child have it. Getting a diagnosis and taken seriously is a really positive step though. It is great that he is going to have an echo (I recently had one too and knowing you have a structurally normal heart gives valuable peace of mind) and getting to try fludrocortisone. I hope he has a positive effect from treatment.
Statistically, teens and males have the best chance of remission so there is hope in that he ticks both of those boxes.
Do you or any family members have features of hypermobility/EDS? Others in your family may have these but be lucky enough to escape orthostatic issues. My dad 78 clearly has it and son 10 looks like he has it, but my dad is as fit as an ox and has never had problems standing.
I was diagnosed with hypermobile EDS since developing POTS, but the other features of it are minimal in me & nothing I would have ever seen a specialist for. I know there is an association with POTS and EDS, but I will also never stop searching for an actual cause and treatment. People are born with EDS but not POTS, so I don't necessarily believe it is causal. I highly suspect the fact that I produce no renin or aldosterone hence cannot retain adequate fluid has far more to do with it in my case.
Best wishes for you and your son,
B x
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Hi Derek,
My circulation is rubbish too, immobility creates a real vicious cycle. I just posted about this on another thread which I recently purchased and am finding helpful.
B x
Just diagnosed. Questions.
in Dysautonomia Discussion
Posted
I have EDS too, hypermobile type. My dad also has an aortic aneurism and some other features but only me with POTS.
Recently, I got myself scared witless about having the vascular type of EDS. Particularly as I have very high BP spikes. (note these aren't a symptom of vEDS you just really wouldn't want them with fragile blood vessels). If you get reading & find yourself worried like I did, there is a lab you can send off your saliva to for 250 USD for genetic testing to rule out the COL1A1 and COL3A1 mutations that cause vEDS. It is called INVITAE.
I sent off a sample and thankfully tested negative which gave me great peace of mind and the turnaround was very quick. I live in the UK and sent it via fedex.
This may not be on your horizon but I would hate to think of someone else panicking like I was, not knowing where to turn when there is a reasonably accessible way to put it to bed (or if positive get appropriate management).
B xxx