prettyinpink

I was told 8-10mg of sodium a day. The salt tabs also make me sick. I have tried the buffered salt tabs and they are easier on my stomach but, you have to swallow a lot of them. If you started drastically increasing your salt intake then I would check your bloodpressure periodically. A high salt diet can cause hypertension which is one reason why the general public is told to limit it. Hopefully the salt helps make you thirsty and retrain the water you do drink to keep your pressure up at a normal level. It helps me. I usually salt food which is soooooo hard because pre-POTS I never put salt on anything. Eating salty snacks can help but i remember when I was first diagnosed I was so proud of myself for eating lots of fritos only to find out I was only getting 170 mg of sodium per serving. I know it adds up but its hard to eat so much salt when I'm used to healthy fresh fruit, vegetables, grilled chicken etc.

For me it depends on the severity of the side effect and if the side effect gets better or worse. Beta blockers make me very sleepy but after almost a week on Inderal I've noticed an improvement in my fatigue, more of an improvement then pre-inderal because my heart isn't working so hard. I try to hold out for several days on a new med if at all possible so I can really tell if a side effect will last or if my body just needs to adjust to the medicine.

Hi! I just found out I have IAST too so I'm interested to hear how you deal with it and POTS. I have found that a rebumbant bike is the best way for me to exercise right now. With any other exercise my heart rate gets too high so I can't exercise for very long. I"m hoping to work up to other more vigorous exercise. If you are working out with such a high heart rate I would think that you might be working anaerobically. If you are working out anaerobically I would think that you deplete your carbohydrate stores very quickly and maybe thats why you feel worse hours after exercise. Does eating something right after you exercise make any difference? Are you sure you rehydrate after exercise? Those are my only thoughts.

My omcron monitor seems to error with standing too. I often wonder if it is when my pulse pressure is low. I thought if the difference between my systolic and dystolic pressure was close then it couldn't tell them apart very well. I'm not sure if that's true but it only errors with standing when I feel my worst.

I have been having the same things happen to me the past few weeks and I found out I have inapproriate sinus tachycardia in addition to my POTS. I assumed it was all part of POTS but its not just POTS and so my cardio has me trying a new med.

Flop- I'm sooooooooooooo jealous that you have access to Ivabradine. This medicine is not FDA approved/available in the US but I've heard wonderful things about it. I've had a terrible time getting my heart rate down. Beta Blockers lower my blood pressure too much although I just started a new one hoping its different. Ivabradine is the only medicine out there that specifically targets the sinus node and lowers heart rate without any effect on blood pressure. I wish it was available in the us.

I'm almost never cold. It was 16 degrees outside her yesterday and I was outside throwing a ball to lucy where a tshirt and jeans and I was fine. That being said on the rare occasion when I do get cold my POTS is terrible. I don't know if your body just gets soooooo overwhelmed with actually being cold that biases itself toward keep you warm and "forgets" to send the signals to keep your pressure up. In general when you are cold your veins contract so its typically easier to keep your pressure but typically isn't in our vocabularly lol

I have to tell you that even though you get crabby I'm sooooooo impressed that you chose to walk in stores and wait in lines. I think thats soooooo much better for you and can prevent deconditioning that makes your pots worse. I'm still using my wheelchair a lot because I walking in around and out of the store without passing out yet but i'm working towards it. I do walk behind my wheelchair in stores as much as I can. Your determination to stay out a wheelchair despite the fact that being a wheelchair might make life easier for you inspires me. You are physically suffering for the good of your health and if that makes you a little crabby toward sales people sometimes i say oh well.

Sophia - you made me giggle I meant that the dog can load and unload the clothes washing machine / tumble dryer.

Here in the UK you can't just decide to train your own dog to be an assistance dog. There is one charity that will help you train yur own dog but they have very strict criteria and the dog must pass assesments by them before their trainers will work with you. Also in the UK it is illegal for a dog to be used to pull a wheelchair.

I think that for some people with POTS an assistance dog could be very helpful but for others the increased work of taking care of a dog and exercising them would outweigh the benefits. My main reason for wanting a trained dog is so that I could live alone and have the dog raise the alarm if I faint and can't get up. I have several times fallen down the stairs and dislocated joints so that when I have come round I still can't get up or call an ambulance. I hate having to rely on my sister to be there "just in case".

Flop

I know that you have to have special companies in the uk train a dog to be a service dog but, if you just want the dog to keep you safe at home couldn't you train it yourself? or with a trainer? but not as highly trained as service dog that goes in public since you only want it for when you are home alone? I don't recommend just picking a random dog to train ,

typically my hr is 100-120 resting and 140-180 standing. Dr.grubb said that the IST is what keeps my hr still so high at rest and the pots is why it rises >30bpm with standing as well as causing the other pots symptoms i have.

lauralulu- do you have a cardio to take all these results to? do you have other symptoms?

Hi- no I don't have any sort of specialist at the moment. I've been 'ill' for approx 8 years, with some times being better than others. The most apparent symptoms I've had are constant thirst, overactive bladder (which don't really go well together, haha!) and fatigue. Period problems (irregular, heavy and painful) and more recently feelings of weakness, shakyness and breathlessness.

I have many other things too that I've had for years, such as neck aches, back aches, headaches, migraine 'auras' and forgetfulness.

I'm only just starting to realise how all of these seemingly unrelated symptoms could in fact be linked together...

I'm hoping my GP will be sympathetic and refer me on to someone who could give me the right sort of tests.

Have you ever been tested for diabetes insipidus? The constant thirst and overactive bladder make me wonder. Or even regular Diabetes? The diabetes insipidus is just people who lack the hormone that makes you retain water so you take the hormone in pill form. Are there any POTS specialists around you? Its crazy when you start to realize all the symptoms pots can cause. I didn't have full blown POTS until a few months ago but i think i had beginning symptoms long before that. I ran track and cross country and i remember reading about running with your hr in the 60-85% of your max zone and how you can't keep you hr in the anaerobic zone for longer then a few minutes yet, i'd run entire 5k races with my hr at or nearly at its maximum.

I just started researching ablations because I found out i had inappropriate sinus tachycardia in addition to pots and ablations are proposed treatments. What i've read is that ablations for IST are very successful in the short term but in less than a year the majority of people have all the symptoms back and sometimes they are worse then before the procedure. This is a sinus node ablation by the way. A women on here who just joined posted about having had ablations done that worked originally for her but then things were worse and her second ablation caused big problems. You can find her post and maybe talk to her about it.

I can't be sure but I think the information on the Wikipedia page is wrong. In the DINET documentary that has recently been released one of the doctors says that there are no FDA approved drugs for POTS but that doctors prescribe drugs that were FDA approved for other conditions. For example Florinef / Fludrocortisone is FDA approved for Addison's disease but is commonly prescribed "off-label" for POTS. They also said that there isn't even a medical condition code for POTS. (I think that I am remembering correctly but please do correct me if my memory has messed up).

The problem is that obtaining FDA approval (or similar in other countries) is a lengthy and very expensive process. A pharmaceutical company will only spend that money if the new approval will bring them lots of new prescriptions (ie make them a large profit). As POTS is relatively rare they would never make enough money back to cover the expense of the FDA approval process. The pharmaceutical companies rely on doctors taking the risk of prescribing off-label.

Flop

I'm soooooo jealous you have live in the uk and have access to ivabradine. I would really like to try that medicine for my tachycardia but its not fda approved in the us

I'm gonna throw a monkey wrench in your thinking: when I had my single horrid day of endocrine testing (it was supposed to be three days) they gave me L-dopa. Almost magically the tremors I'd been having all day were gone and my headache lessened considerably. Then, when this same endo wanted me to start Pristiq (SNRI) for fatigue, my Vandy cardiologist adamantly said "NO WAY!" If I wanted a SSRI that was fine, but no N. Would it be because of the hypertension I exhibit on standing that he said this? Why would a Parkinson's drug that increases dopamine, assist me?

I did some research for you and found that snri increases the release of norepinephrine and people with hyperadrenic pots have way too much norepinephrine being released. Also, the L-dopa and tremors issue seems more complicated. Significant loss of dopamine or decreased sensitivity to the dopamine receptors can cause tremors and L-Dopa can help. In hyperadrenic pots tremors are caused by excess adrenalin and noradrenalin. maybe the L-Dopa is able to make dopamine that can inhibit the tremor despite its cause??

this was an a university of cincinnati hospital ask an expert page. this response is from an md.

http://www.netwellness.org/question.cfm/52818.htm

A guy said he noticed his hr was 10-25 bpm faster then normal depending on the time of day.

The Dr's Response: The increased rate effect you have noticed happens with most people who start a stimulant. Many people will have less of an increase in their pulse after taking the stimulant many months but their pulse is still usually at least a few points higher than prior to using stimulants. There is usually noting to be concerned about as long as the increased pulse is not making you uncomfortable (physically or in terms of anxiety) and is not associated with breathing problems, sudden sweating, dizziness or chest pain.

well in some POTS-i think especially those that have hypotension with standing such as myself there tachycardia is a compensatory mechanism to try to raise the bloodpressure. By taking the adderall which constricts my veins, my bloodpressure is higher and my heart rate is lower because its not trying to keep my pressure up. Tachycardia is a side effect but is a "lesser side effect" and so even if you do have it as a side effect it seems like the amount it decreases your high heart rate with standing would be much more significant then the amount it could increase. But different medicines have different degrees of effectiveness and usefullness. I know 2 girls with POTS that tried adderall and couldn't tolerate the side effects. But i don't know enough about how it all works, I tried to some research and then got tired.

"Ritalin will increase the brain's ability to inhibit itself. This allows the brain to focus on the right thing at the right time, and to be less distracted, and less impulsive. Ritalin will increase the "signal to noise ratio" in the brain." I found this on a website. There are scientific reasons why ritalin and other cns stimulant meds work for some people with adhd. I usually look up the mechanisms for how a medicine works before I take it so I know whats going on in my body and its usually not too hard to find online. I found this article online, maybe its helpful?

http://www.ocweekly.com/2008-08-28/news/th...in-on-adderall/

Oh I take adderall in the morning and around 1pm occasionally I have forgotten to take my 1pm dose until it was 3pm and so I had to skip the dose so I would be able to sleep at night. I didn't have any problems missing one dose although I did take extra midodrine/proamitine to help with the vasoconstriction. I also take extended release so I don't have a big jolt after i take it or a crash when it wears off.

I just started taking CoQ10 a few weeks ago. I haven't noticed a big change but i know there are many short term and longterm(heart protective) benefits so I keep taking it. I would think that if you were deficient in CoQ10 that you would notice a huge improvement in your energy. Did you have your levels tested before you started taking it?

I would probably have problems to it if i decided to stop suddenly. My body might be addicted and I would just need to go off of it slowly to prevent a dangerous physical crash. I've been taking the same dose for a while now and I never feel like I need to take more if thats what you mean by addiction. I don't feel like i'm taking a stimulant actually. I'm sensitive to caffeine so i know that jittery hyper feeling from stimulants. With adderall I just feel more awake and able to focus/read/pay attention; almost but not quite back to my pre-POTS self. I know some people that do just take it some days but because i use it for its vasocontrictive properties I can't take it sometimes and not others because it would really throw my POTS out of whack.

I'm not hyperandregic. Mine secondary to my type 1 diabetes and peripheral neuropathy. I don't know enough about using ritalin/adderall to be able to tell you if its used primarily in any one type of POTS. I know its not just because of my neuropathy though because I know other people with POTS that use it or tried it. You might need to be careful about how you bring up the possibility of trying it to your dr because it is a carefully regulated schedule II drug.

ha ha Sophia3 I love the picture. Actually dogs are very strong and you don't need one as big as a newfoundland to pull a wheelchair(this would depend on a person's weight i guess). Lucy is a 50lb lab and helps me but i only have her helped on the tiled floors in stores and in my school. I propel the wheelchair with my legs or one of my arms while i hold onto lucy who helps. but her main job is my crazy irratic bloodsugars. I think when after my wedding when i move into an apt i will work on training her to get me water bottles/my phone and maybe some other tasks. Thanks for the TRULY trained comment Sophia3 I get very upset when I hear of people just taking their pets out in public.

ritalin and adderall are both very strong vasoconstrictors plus the cns stimulant part can be a huge help with brain fog/concentration etc. I take adderall strictly for POTS and I don't know what i'd do without it. I didn't know about the fda approval for ritalin though.

typically my hr is 100-120 resting and 140-180 standing. Dr.grubb said that the IST is what keeps my hr still so high at rest and the pots is why it rises >30bpm with standing as well as causing the other pots symptoms i have.

lauralulu- do you have a cardio to take all these results to? do you have other symptoms?

OH and I've been training lucy since she was 4 months old. I have worked with a few different trainers and gone to a few alert dog training workshops. Lucy does help pull my wheelchair which is a huge benefit related to POTS.

I have a service dog. SHe is a diabetic alert dog and can tell by my scent when my bloodsugar is going out of range. I can't feel my sugars changing until I suddenly shaking on the floor or uncontrollably puking. My bloodsugar can go from 300-50 in 25 mins and I wouldn't notice a thing until I become incoherent. She always wakes me up at night for highs and lows which prevents all of my diabetic seizures.

Actually, businesses are allowed to ask anyone with a service dog 1. Do you have a disability? and 2. what special tasks is the dog trained to do. There are huge fines for people who put vests on their pet dogs and just take them out in public because they want to.

When I do pass out lucy licks my face over and over again but, honestly I wouldn't need lucy if i just had POTS and not type 1 diabetes. Having a dog is a TON of work and some days I wonder if its worth it with POTS but, I know that because my sugars are until control my POTS is a thousand times better. Taking care of a service dog and training requires a lot of time and energy so consider that before you decide to get one.

So I was sitting in class today and started getting extremly hot. My heart was pounding really fast in my chest. My heart rate was 175 bpm and i was sitting still with my legs propped up on a chair. I laid down for a few hours and my hr came down to 160. My cardio wanted me to get an ekg done to be safe. Dr. Grubb met me in the er after my ekg which was normal except for the tachycardia. He said I have inappropriate sinus tachycardia in addition to my pots which i why my resting hr is so high. Just thought I'd let you all know there was a reason for my high resting rate. I'm trying another bb so hopefully that helps.

So if this 1-5pm episode is not caused by bloodsugar drops but just by my body's chemistry what can I do?? I always end up with low bloodsugar but its usually around 2-3pm because of my heart rate racing for the previous couple of hours.