bombsh3ll

My hr and bp go up on standing and have been in the 180+ range when I was on licorice. Lower now but just as presyncopal. First of all are you on any medication? Sometimes POTS patients are given bp raising meds when that isn't our issue.

The above reading could be an error given the extremely low pulse pressure, but equally machines often error when bp is very unstable.

definitely keep a log and see your doctor asap. Insist they take a standing reading whilst you are there. You may be one of the lucky patients who responds to sympatholytics e.g. Clonidine or methyldopa.

B xxx

Amitriptyline is frequently used to slow the bowels down in IBS.

B xxx

I don't concentrate my urine due to lack of fluid retaining hormones so have the opposite problem. In a way it is good that your body is able to concentrate it overnight when you are not taking in fluids. My morning urine only has any colour if I've taken desmopressin. 

Dark urine usually indicates inadequate hydration, so it may be worth keeping some water/electrolyte containing drink beside your bed and chugging some as soon as you wake up.

If it looks foamy though I would get it checked to exclude a UTI. 

Just to clarify, are you waking up during the night to pee as well? If you are able to concentrate but going frequently, that could signify a bladder problem. 

B xxx

4 hours ago, Lily said:

The elevated bed position helps me to not have to pee after 3 hours.  I can make it to 6 hours instead.

Desmopressin is great for that, didn't help my OI though. What time of day do you take your fludrocortisone?

B xxx

I know, it would be lovely if one thing could fix everyone! Certainly there is nothing going on at the Pots Treatment Center that you cannot get at home much cheaper. 

B xxx

Hi it is normal. Mine was 555 in the afternoon (bit high) but was on licorice root at the time. 

B xxx

I second all the advice above & am sorry your daughter is going through this at such a young age.

It can be particularly helpful using online/printed medical information that is concise, written by experts and easy to read when dealing with the school or people who don't understand, that way there is something you can just give/direct them to without having to get into the explanation yourself. 

Be persistent with the doctors, she has tried one of MANY treatments, of course not everyone responds but do not give up if the first one or two disappoint. 

Non-medical things I have personally found helpful are trioral electrolyte mix, recumbent exercise bike/gym mate seated pedaller for seated exercise to build & maintain leg strength, & for a good while licorice root, a herbal supplement by Swanson which has blood volume boosting properties without the harsh side effects of Florinef. 

Aside from POTS medications, it may also be helpful to see a gynaecologist to consider suppressing or minimizing her periods, as even if the bleeding is not excessive, the cyclical hormone fluctuations can make things worse for young girls & women with POTS/dysautonomia. 

I would also not shy away from mobility aids if she needs one, like a folding stool, rollator or wheelchair. Whilst no teen (or any person) wants to use these, if they allow participation in school or events that she would otherwise miss out on, then they can be really helpful in terms of her mental health & keeping her included rather than stuck at home. 

Best of luck with her new doctor,

B xxx

Glad your blood counts have stabilized now. Also hope your current line goes the distance! I am getting my first regular home bag of saline tomorrow over approx 4 hours in the morning 😀

It is very expensive for me to pay for nurse visits as this is not covered by the NHS, so if I am doing it for any length of time will need to get something that I can use to run fluids independently. If I could get peripheral infusions free then I would try this options for longer, but really the cost of having a central line put in would pay for itself after just a few uses. 

B xxx

Thanks that is all really helpful to know! I think the Groshong sounds like the best fit for me if I am offered that as a choice. I have to get the peripheral trial done first and see if having regular fluids helps me. I am considering getting a thrombophilia screen done prior to deciding on a central line just to exclude any clotting disorders. My dad had a serious portal vein thrombosis aged 68, he had been dehydrated that day but no other reason. It damaged his liver though and he was in hospital for several months. He was tested for clotting disorders, I am not sure how thoroughly but all was negative. 

I was on combined hormonal contraceptives for 10 years, over 4 years with POTS and very immobile, so I don't think I have any inherent predisposition to clots, I just know I would worry about it, though I hope the fluids would make me more mobile and my blood less thick. 

The line I had in my neck for the TPN was not comfortable, but it was only a couple of weeks. I did not have any problems from it but was mobile then and on heavy duty antibiotics from bowel surgery so not a massive risk for infection from it at that time. Also I was in hospital so getting a daily heparin injection. 

8 hours ago, ANCY said:

At this point hematology recomended i remain on blood thinners indefinitely despite the reoccurring anemia

Can I ask which blood thinner you take, and has a cause been found for your GI bleeding?

B xxx

10 minutes ago, jvherenow said:

I do not have a port and have no problem with getting access through my hand veins. I've been doing it since February and it makes a huge difference. I usually get a good 48 hours of improvement from each infusion.

Wow that is good to hear! That is what I plan to do at first but I am worried because my veins are rubbish due to hypovolaemia - before POTS they were like drainpipes - and it always takes multiple attempts. 

13 minutes ago, jvherenow said:

My PE symptoms were indiscernible from the POTS symptoms, shortness of breath tachycardia, chest pain, dizziness, feeling out of sorts. However, I usually don't get a HR of 130 sitting dow

Clots are actually the bigger fear for me for that same reason. I have also had HR over 130 sitting. I feel I would have more awareness if I were developing an infection redness pain fever etc but the symptoms I have daily closely mimic those of a PE. 

How often do you receive fluids and how long do you plan to get them?

B xxx

Sorry maybe I didn't explain what I meant - I was on TPN through a line in my neck following bowel surgery years before POTS, and it isn't the line care it is the fat and sugars in it that bacteria love. Also with chemo, some of the drugs used are venotoxic causing local inflammation to the vessel walls which is why they need to be given into a main vessel not peripheral. The localised vessel irritation then provides a focus for infection to develop. Secondarily chemo patients are also often immunosuppressed by their treatment and hence more prone to developing infections than someone.

These are my arguments for why someone with a normal (as far as I know) immune system receiving fluids only is at less risk than the overall statistics for all people with a central line. 

B xxx

Hi Derek,

I have heard of choking episodes being a part of dysautonomia - swallowing is one of those functions with both voluntary and involuntary control, & the ANS has some input. It is not a major symptom for me but I have gagged and retched a few times, particularly on pills or a meal I really don't feel well enough to eat, during the course of my illness that I never used to do when well. 

To determine if it is the medication, you would need to have a trial off it (check with your doctor) and see if the problem goes away. There will be your answer. I hope it does resolve for you. 

B xxx

I know it's not much but I had a bath and washed my hair today!!!

B xxx

15 hours ago, ANCY said:

I've had piccs several times, 3 ports, 2 groshong and several other temp central lines. Currenty have a groshong because my Infectious Disease dr has me use an ethanol lock to decrease infection risk.

Thanks for all the info! Which form of access have you found the most comfortable/safe/user friendly/long lasting. 

15 hours ago, ANCY said:

I have had sepsis 10 times now and central lines are always a touchy subject

Gosh that is a lot, do you have an immunodeficiency disorder of some kind or is it purely attributed to the lines? Also are they just used to run fluid or other things? I understand the risk is higher if they are used for TPN or certain drugs rather than purely fluids which is all I would be using it for. 

15 hours ago, ANCY said:

I have had two PEs both unrelated to having central access.

How is that determined? Do you have any underlying clotting disorder? I am really scared of clots, mainly because my daily symptoms have so much crossover with those of a PE that I am scared I wouldn't know if I had one, and also because of immobility, however fluids may improve the latter & balance out that risk somewhat. Do you use heparin to flush?

B xxx

2 hours ago, Machair said:

Does anyone wake up feeling well or normal any more?

In a word no. I feel at my best (although far from well) in the evenings, when I assume my blood volume is highest, but I go to sleep and feel like death all over again by morning. It would be great if we didn't have to sleep!

B xxx

On 5/11/2019 at 3:36 PM, Lavender90 said:

I am fighting to get it on weekly trail but they all terrorifed of giving it !!

I have seen a private cardiologist and presented him with the current research on IV saline (Ruzieh, Moak, Jacob), plus the studies by Raj & co demonstrating the typical blood volume deficits in POTS. I explained that it is the treatment with the strongest supporting evidence of benefit and least risk of harm. Just think of all the issues caused by the other POTS meds given to us - high BP, low BP, bradycardia, arrhythmias, strokes, electrolyte imbalances (which can be fatal), raised intracranial pressure etc... What is the worst that can happen with a bag of saline - you pee it out & may get a bruise at the IV site. He has agreed for me to do a trial of 1 litre a week for 6 weeks. I will have to pay for a home care nurse to come and administer it to me. The actual saline cost £17 something for 6 bags from Lloyds, my husband is collecting it this afternoon. 

B xxx

22 hours ago, MeganMN said:

Well, the saga continues.  I see the NeuroEndocrine Specialist on May 21st and in the meantime, my Parathyroid Level came back a second time super high, but normal calcium, slightly low Vitamin D.  Am adding Vitamin D Supplements.  This is all just such a weird thing....

I hope you find some answers & relief. Are you having a scan of the parathyroids? If there is a functioning tumour there causing your problems, removing it could be a definitive fix.

B xxx

On 5/11/2019 at 12:40 PM, RecipeForDisaster said:

I am always hesitant to look like a hypochondriac, which is dumb, I know.

Hypochondriacs are healthy people who couldn't give a fig about wasting medical appointments. (sorry but I saw enough in my career, one guy came six times with a fungal toenail & no he didn't model sandals for a living) We're the opposite! Go and get it checked. 

B xxx

On 5/11/2019 at 3:29 PM, Lavender90 said:

thank u all for replying . I have seen dr Julia newton and dr gupta I am looking for a doctor to help as don't seem to react good to anything they all send me backwards the drugs it really scary . I am in the north of uk

 

How did you get on with Dr Gupta? Dr Newton diagnosed me but couldn't help with treatment, just suggested things I'd already tried. 

B xxx

Thank you so much for sharing, I am sorry you have been ill so long (I am coming up for 5 years) but it is so encouraging to see a long timer doing relatively well. It seems to me those who develop it in adulthood and don't recover quickly or respond to meds just progressively worsen as the years go on, so thank you for showing that it isn't always like that!

I used to get those sleep jerks in the first few months too - they stopped when I stopped the SSRI. Also lost significant weight at the start and strongly suspect I have low blood volume.

Are there any meds or other strategies you have found helpful in stabilising/improving things?

I no longer salt load but do drink oral rehydration solution which has salt in. 

B xxx

My blood is like treacle, due to plasma volume depletion from polyuria. I tried heparin injections for a while, also tried nattokinase & aspirin but no difference. Be aware that heparin can lower aldosterone production. I don't produce any aldosterone anyway, but if you do, you don't want to lose it.

On the other hand if it got you upright, that may then stimulate the RAAS. I hope you have success if you try it!

B xxx

6 hours ago, Jason_X said:

I have a pineal cyst as well as REALLY bad sleep problems.

I have struggled with insomnia since childhood & wondered this myself as the pineal gland helps regulate circadian rhythm. I had a brain MRI scan in 2001 for an unrelated reason though which was reported normal so either the cyst wasn't there then or the scanning technology at that time wasn't as high resolution. Thinking about it though, I was told my scan was normal in 2017 & only discovered the cyst when I got my recent scan report referring to it as being "unchanged since previous MRI", so it was there, the neurologist just hadn't mentioned it in 2017, so perhaps this was the case in 2001 also. 

B xxx

2 hours ago, RecipeForDisaster said:

I guess one could switch their head to the foot end to kind of lower the head below the heart.

I loved being in an adjustable hospital bed where you could raise the legs up, but I would be wary of sleeping like that because head down tilt is known for inducing orthostatic intolerance in NASA's astronaut studies. The point of sleeping head up is to create the opposite effect. 

On a side note however, when I was 18 I had very heavy bleeding for many weeks during my first pregnancy, this was before I had any medical knowledge. I decided to go one better than bedrest and spent weeks lying head down on a sofa with a car jack under the foot end. I never got POTS then. The increased blood volume of pregnancy may have mitigated it though. 

B xxx

2 hours ago, RecipeForDisaster said:

I wonder if you could prevent clots somewhat with aspirin or clopidogrel

Yes, aspirin isn't perfect and only works on one mechanism but I think I def would take low dose if I had a long term central venous access device. Clopidogrel is more costly and harder to obtain here as only used for very limited indications. 

2 hours ago, RecipeForDisaster said:

I have no idea how I'd recognize an MI, PE, even sepsis. I feel like those conditions 24/7

That is what bothers me. Now that my BP is normal, have tested negative for vascular EDS and am off combined hormonal birth control, I can feel pretty assured that although I feel like I am dying a lot of the time, I'm probably not. If I had the same symptoms with a port/central line, it would be a different game. We constantly live with many/all of the symptoms that people are always advised to seek emergency care for! 

2 hours ago, RecipeForDisaster said:

I actually wondered whether I should have a 12 lead recently because of really unrelenting chest discomfort for weeks

I think that is a reasonable request, it is pretty basic!

B xxx

I have hyper pots type symptoms & orthostatic BP rise but normal blood level of catecholamines. 

The only thing I have found helpful myself is low dose diazepam. Licorice root helped me greatly for a year but the benefits wore off and I developed high BP on it. 

What have you tried already? Hyper types tend to respond best to beta blockers or clonidine & other sympatholytics, but they just made me faint more. 

B xxx