Pistol

@Scout - I am familiar with this feeling and in my case it is considered syncope. I usually experience full loss-of-consciousness or seizures but at times I do not loose consciousness fully and am somewhat aware of what is happening, I can remember who was present and what was said while I was out but I can't move. They still consider that syncope. And no wonder - that was a crazy drop in BP! I would call your specialist right away and tell him/ her so it can be addressed. It must be scary for you to know it could happen again!!! Be well!!!

@Derek1987 - why don't you ask the person that cuts your hair - they might know of something. Or maybe you have a family member, friend or neighbor who would cut your hair for you?

@Salma O - what helps me is chicken broth with extra salt, pretzels/ crackers, Gatorade, olives and plain bread with salt sprinkled on.

@CallieAndToby22 - I have IC and used to get a medication mix of lidocaine, Heparin and something else instilled into my bladder. I had to leave it in for 30 minutes and then could use the bathroom .It did help some. Maybe that might be helpful to you?

@Scout- in my case the pain is left sided, achy and often radiates up my neck. Often my BP is high when I have it but not always. I do get the pain under my sternum as well but not sure if that is GI related. I was on a nitroglycerin patch for a while but weirdly the chest pain went away on its own once weekly IV fluids were started. I believe that this is b/c the fluids prevent sympathetic overcompensation ( which causes vasoconstriction ) by whatever mechanism.

@jamie0410 - in my case I was encouraged to increase both salt and fluids, despite high BP. It did not help very much but also did not do any damage. But it is different for all of us. My sister also has hyper POTS and was prescribed - in addition to Carvelidol and Diltiazem - Clonidine. I could not tolerate that medication but it has helped many others. Compression may or may not help with hyper POTS - try it out.

@jamie0410 - hyperadrenergic POTS is quite difficult to treat. Here is an article from our information resource site that explains it: Hyperadrenergic POTS (hyperPOTS) An overview of a POTS subtype In my case I responded best to vaso dilators like Carvelidol and diltiazem but also take Guanfacine, Ritalin for the brain fog and fatigue, SSRI... but even after taking all of those meds ( and more ) what finally controlled my HR and BP and stopped the seizures and syncope was IV fluids. They keep my BP and HR perfectly stable and minimize the orthostatic problems.

Thanks @Sushi for sharing, it is a great article!!!!

Thanks for sharing @DizzyGirls - that is very interesting! I take autonomic seizures and also have been on several BB's but I found carvelidol to be the best for me. I am glad they found some way to help your daughters.

@jamie0410 - I have hyperPOTS and suffer from elevated BP and tachycardia as well. In my case metoprolol did not do anything and I required several meds to get it under control.

@Derek1987 - I had to pply for SSDI b/c after I had to stop working I had Longterm disability insurance and they required me to apply ( so they did not have to pay for the rest of my life … ) and they supplied an attorney. Still - it took 2 years and 2 denials and I had to tell the ALJ personally what it is like before I got approved. Don't be disappointed if you get denied the first time around - that is common. With me they focused on seizures, which were caused by POTS. They seem to just go by a symptom since I do not believe POTS is understood by them. But I was told that it is a Diagnosis that they recognize.

@Derek1987 I also believe that it would be beneficial to you to see an autonomic specialist at this time. If you apply for SSDI based on anxiety your psychiatrists eval may be enough but you will be assessed on that diagnosis. If you want them to consider the syncope/ dysautonomia as a reason for disability you should see a specialist ( I understand that you say the physician that is seeing you for your dysautonomia symptoms is a specialist but if the treatment is not working I personally would seek a second opinion ).

@Derek1987 I agree. If you try to get SSDI on grounds of anxiety rather than POTS ( which apparently you do suffer from ) then the syncope will not matter b/c it really is not a symptom of anxiety. So I understand why they would want you to get a second opinion - to determine what the ANXIETY does to you. You no longer are asking for SSDI due o the syncope/ POTS. This is a whole different ball game!

When I got SSDI ( I had a hearing and the judge declared me fully disabled on the spot after hearing what POTS does to us ) I first was relieved. But that soon changed to waiting until I got better so I could go back to work. LOL! I was a nurse and was supposed to put my license on retirement status ( it has to be renewed every few years ) and kept thinking that I am going to need it soon to go back to work. When it finally sank in that this is forever I became really depressed. But today I am just simply glad that I can function doing the little I can.

@Green48 - I am sorry you had to go through that. I had 2 chemically induced stress tests done and never had a reaction like you describe, so it very well may have been an allergic reaction. Very scary! It might take a while for your body to get back to "normal", so take it easy and get better! Scout - I had many tests done for the chest pain I experience from POTS. Last year my cardiologist did heart cath and found out I have Prinz Metal angina, the arteries around the heart constrict and spasm, causing the pain. I have hyperPOTS, so I have problems with severe vasoconstriction. Maybe this is what is going on with you as well?

@Scout - since you are planning on goint to comic con - check if they provide wheel chairs. I have experienced that sometimes they offer them at big events.

I would like to add that both sleeping with the head of the bed elevated and salt loading are widely recommended by autonomic specialists in the treatment of POTS and have shown to be effective for many patients.

Thank you, @haugr, very interesting!!

@Scout - yes, I can self propel in a regular wheel chair but it gives my legs a work out and after a while they hurt. You can use your arms to propel your self as well. As far as brands - there are many to choose from of all you are after is a regular wheel chair. Mine was purchased by prescription ( from my PCP ) from a medical supply store, my insurance paid for it. It was about $ 600.

Hi Scout - I use a regular wheel chair for any function or activity where I need to be mobile for an extended period of time, i.e. taking my teenage daughter shopping. It works great b/c I can propel myself when able but can have others push me when needed. Don't worry about the people that tell you that you can walk or get along without a wheel chair - they cannot see how you feel inside. If you can go to comic con - by all means, take a wheel chair!!! Good for you to try going!!!!

Dear @dannyg - I believe that our cortisol level ( well - all hormones actually ) fluctuate throughout the day. That is why there is a range given - as long as it is within that range we should be OK. Personally I believe that your levels appear fine but if you have concerns please ask the physician who prescribed the test. Be well!!!!!

@Outaker - I used to get that all of the time when I still worked. A few times I had put on a heart monitor while at work ( used to work on a cardiac unit ) nd as it happened my HR would soar up to 150 with me just standing there. Friends would tell me that I would also turn pale but my lips would get blue. I would feel nervous and tremble. Sometimes I could stop it if I could lie down in a dark room ( bathroom was perfect … ) but often it was too late and I would either pass out or take a seizure. After that it was over. Today I hardly get these spells anymore, thankfully. Between medications, IV fluids and being severely restricted in my daily activities I am able to avoid these spells.

@dancer65 - I have seen great effects from bracelets. Here in the US they sell them in retail pharmacies or Walmart, they are treated with citronella oil and you wear them and they really worked for me. I am a delicacy for bugs - they really like my blood. and I too break out really bad from the bites, so I know what it is like. These bracelets have helped and are cheap. I think you can get them on amazon. Another thing that helps - we light incense sticks when we are outside. Especially frankincense keeps the bugs away but in your case it might cause breathing problems.

@Scout - no, my specialist said it is not the right med for me. I have hyperadrenergic POTS with severe vasoconstriction issues, so it would not help me, probably make things worse.

@ljfoster - yes. I hardly ever feel thirsty and need to remind myself to drink, despite ingesting large amounts of salt. It was that way for most of my life. But if I DO get thirsty it does not end - I am like a camel and cannot stop drinking. However - I do not really get dehydrated b/c since onset of POTS I drink all day long, part of my treatment regime.