Pistol

@Bluebonnet08 I have hyper-POTS. I was diagnosed by TTT and norepinephrine levels which were elevated both resting and upright. My flares look like this: tremors, freezing cold, shivering, yawning, cold hands and feet, heart racing, chestpain, high BP and eventually syncope and seizues ( due to extreme vasoconstriction in the brain from the high Norepinephrine ). I was to Vanderbilt twice when my symptoms first started in 2009 but they failed to diagnose me. I then went to UTMC in Toledo where they have a worldrenowmned autonomic specialist and he did the blood test and diagnosed me on the first visit. Since then I have tried many meds but finally found a combination that works, at least my flares are not that often any longer and - although I am fully disabled - my symptoms are for the most part bareable. I hope this info helps - good luck!

I also would like to point out that frequent small meals rather than 3 big meals is much better tolerated by people with dysautonomia, it helps with hypoglycemia, GI issues like GERD or IBS and minimizes BP drops after eating. Plus it is a lot easier to " eat a rainbow" when you graze all day.

I do not know if this helps but I have a german shepherd who has sat down by me when I get presyncopal and on more than one occaision has alerted my husband when I passed out. How she knows I am unconscious versus just sleeping - I have no clue.

I know someone who has tried it for electro-magnetic hypersensitivity ( they apparently become physically and mentally ill from exposure to certain lights and especially cellphones. Two of those people I know swear by it however - I cannot observe a huge different. They still live in houses covered with aluminum foil and still avoid fluorescent lights and microwaves, cellphones, cordless phones etc...

@ANCY I have POTS with very much the same symptoms as you (although I am lucky to get good days). I showed your post about your marvelous dog to my 13 year old daughter and she would like you to know that she loves your dog and the coloring reminds her of a cow but in god way (don't ask) I think that is meant as a compliment. Best wishes for you and the special dane.

@Bluebonnet08 - I so much know what you are going through!! I had these episodes frequently years ago when I was just diagnosed. It is so scary - yet the only way to get it under control is to stay calm, despite the fact that every fiber in your body wants you to FREAK OUT! So much more scary when you have a baby-on-board!! What helped me was beta-blockers, especially Carvelidol. I am not sure if you should take that while pregnant but maybe you could consider it after the baby gets here? Until then you might have to just do the old calming-down routine: sit or lie down, take even and deep breaths, remind yourself that you are present in the moment ( hold the baby in your belly and tell the baby to be calm - it will help you too ). There really is nothing else you could do - it is not your fault that you feel like this and trying to stay calm through it is the very best you could do. I feel for you but I know you will be OK!

Hi - I am sorry that you are having such a bad time. Some of your symptoms sound typical for POTS, some do not. In the way of medication: have you tried SSRI or SNRI? This helps many patients with POTS. It could also help with your anxiety issues. To answer your question about anxiety triggering POTS: it does not cause POTS but it is a symptom of POTS, mostly because the symptoms of POTS are so scary. And in my case I do get anxious when I have Flare - ups. --- Have you ever asked your Doctor about IV fluids during a bad episode? There are many patients who benefit from them. Also - how were you diagnosed, a Tilt-table study or Vital signs or by symptoms? --- I hope you feel better soon.

@HappyBee - about your question about a blood glucose monitor- once I did check it during an episode and it was 39. That's pretty low. But I never invested in one because it really does not matter to me how low the Blood sugar is - as long as I get it back up as soo as possible.

Hypoglycemia is not uncommon in dysautonomia. The best diagnosis is based on symptoms and a fingerstick bloodsugar when you have symptoms. I get this so often that I immediately eat a high protein snack ( like cheese ) and juice or grapes followed by a salty carb. This helps within minutes. Your doctor can order a glucose intolerance test if he feels this might be helpful.

@Bluebonnet08: When I first got sick I was seen by 5 cardiologists, 2 of them Electrophysiologists. They had NO CLUE about POTS and did not want to bother with it either. It is important that you request an EP with experience in dysautonomia. I had to go out of state and found the wonderful Dr Blair Grubb in Toledo who saved me by diagnosing me and patiently and knowingly spending years to find the right treatment. He is a EP. So - there are good EP's out there but be specific in requesting one that knows about POTS. Good Luck - I was just thinking about you the other day, wondering how you were getting along.

@HappyBee and @Bluebonnet08: I have noted that - at least with me - the IV's are better tolerated when I get them slowly, 1 l over 10 hours at least. Sometimes I need to stay in the hospital over night for 3 bags until my VS normalize and I am ambulatory. Maybe they give the IV's too fast that you do not tolerate them? If I get a bag too fast I get sick, they sometimes do that in ER's. And @HappyBee: yes, there is a glucose intolerance test they do, you have to drink this bottle of thick jucky syrup and they keep checking you Bloodsugar for several hours aftet that. In my case it dropped way low - so that's how they knew it was glucose intolerance. Hey - in other matters: SPRING HAS SPRUNG!!!

I am just like you, @TCP: little of doing then a little of rest. Spring cleaning will take me right through the summer - haha! But I try to squeeze in several exercises every day, no matter what: some core exercises while lying down, hamstring stretches while lying down, back stretches and light weights while sitting for joints and strength in the arms. Last year I had home physical therapy and they taught me these exercises, they really help a lot! There are standing ones too but I don't do good with them since they take all my energy and then I can't do chores. But these exercises actually are not draining at all and I feel much better than when I was just a lazy blob.... so, I believe that the RIGHT exercise is how you beat exercise intolerance ( who would have thunk it! )

You need to see aa physician familiar with dysautonomia and probably need to start meds, since it was manageable in Arizona but now is not. These are the realities we have to live with. You said you found someone but it takes a while to get an appointment - there is piece of hope right there. If he is good then he will know what to try first, I am sure other POTS people in your state suffer from the climate. Don't move yet - just because your usual treatment no longer works doesn't mean the right one isn't out there! Can you ask if you could be seen sooner due to your symptom-severity?

I have hypoglycemia from my POTS and the symptoms are just like you describe. It sounds more like glucose intolerance. When I eat sweet stuff ( like maple syrup ) without fail 1 1/2 hours later my sugar crashes - weakness, shakiness, cold sweats, extreme hunger... eating a protein with juice or grapes helps pretty fast. This may have been the case for you too - when you got the Dextrose your sugar rose and then just dropped fast when it was "used up". I get Saline or Ringers infusions when POTS gets bad and I tolerate them well. You are probably right and switching to regular RL would do the trick. Also - avoiding concentrated sweets is essential for this type of hypoglycemia. Hopefully you do not have to go through this again!

It never affected my HR but is really good in fighting fatigue. The energy burst from it helps me to do chores around the house in the am and my exercises. I do not take it at night since the pm dose caused me to not feel sleepy. So I do good in the mornings and do less in the pm. Good luck - I never had any negative effects from it, I hope the same for you.

It might be possible that the stress from the move combined with the climate change may have triggered a flare. was this a positive move for you or are you upset over moving? Although anxiety is not the reason for our symptoms it can definitely make them worse. When I had stressful experiences that triggered my POTS I just always had to clench my teeth, make 2 fists and go through them. Have you set a new routine in your new home yet? Rest, cautious exercise and fluids - as well as positive thoughts - often help you through this. Do not lay around - get up, move around little by little, check out your neighborhood, make new friends .... it WILL get better. Do you have a new doctor there yet? IV fluids are extremely helpful to many people and in my case a few litres of Saline do the trick. Don't give up - I had flares lasting months. Hopefully this helps you get motivated.

It is difficult to determine the VS swings when you are on meds. They are not accurately describing what would be going on without them. Your symptoms may still be there but the readings (or swings) may not seem as severe. Have theu checked orthostatic VS BEFORE they started Diltiazem or midodrine? What were they then?

One tip: if she has to start on BB - give them a chance. For the first few weeks she might feel tired and dizzy but this is normal and in most people goes away after a few weeks. The body has to adjust to them.

Yes - plus when I wash my hair I feel like passing out. My doc says this is because raising the arms for shampooing plus the hot water triggers a drop in BP. I HATE showers!!!

I have found that beta blockers are highly individual. I have tried several, with different reasons to discontinue them. What helps me the most is Coreg but only in addition to other meds such as diltiazem and others. Unfortunately the right medication regime for POTS is only found by trial-and-error. I wish you both the strength and courage to keep trying!

Thanks @Clb75 - he is against a picc line also and I have showed him at lzeast 3 articles and studies mentioning ports and home infusions for POTS. So far nothing has convinced him. I appreciate your post!

Hi - I would like to ask anyone here that has an infusion port for IV saline for their POTS symptoms: would you please let me know if you benefitted from the port/infusions? I have not been able to convince my PCP or local surgeons to order a port although I need frequent infusions, need to travel 1 hour to the nearest hospital for my infusions, often one liter is not enough and I need to be admitted to the hospital for infusions for 24 hours to see improvement of my symptoms. I had phlebitis several times from the IV's and I believe that a port with weekly home infusions would really help me control my symptoms. However - my doc does not think that POTS is a good enough diagnosis to justify the potential risks associated with a port. One member on tihs forum has given wonderful testimony about the benefits she had from her port. So - if you have a port and get IV infusions at home for POTS: could you please contact me or post a message on this site? I would really appreciate any input that I could present to my doc. Thank you so much in advance!!!

Hi - yes, I had this test done years ago when I first became symptomatic and then again few years later. The first time they gave me a pill called nitroglycerin which promptly made me pass out (no vomiting at all). After that - 2 years later - I had it done again, this time they gave me an IV medication called Isoprotenerol (Isuprel) which made my heart start beating strongly out of my chest but no passing out, and no nausea or vomiting, either. Be brave - it will be OK.

I see that your strip shows tachycardia and one PVC ( premature contraction ) The towering T-waves could be caused by the way the leads are placed on your body and the angle in which the electrical conduction is reflected. A real EKG displays the electrical conduction from several angles therefore it can be interpreted differently. It would show in which lead (or in what area of the heart) the T-wave is elevated. This would give the doc a better idea if the elevation is serious or harmless in my understanding.

I am surprised you only use 1 l/min, most people start with 2 l/min. Maybe if you go up to that your o2 level at night will improve more?