Pistol

@MikeO I had this test a few times. Really you just eat eggs and then lie down for scans. Waaaaaay easier than a TTT!

@Macho319 I get this symptom when my BP is high. It is like a pressure in the chest going up the neck on the left side. Have you checked your BP when you feel this?

@Sarah Tee These are common symptoms accompanying high BPs as you had. Long ago, before proper treatment, my BP and HR would go up together, like 180/100 with HR of 150. My heart and head at those times felt like they will explode! So - those symptoms most likely went along with your high BPS. I am relieved that you are off the Verapamil and have stabilized again!

@MikeO Could you please elaborate on this statement? I am not sure what you mean by "perceived (POTS)". POTS is a type of dysautonomia, it is not just a symptom - rather it is CLASSIFIED by a PATTERN of symptoms. I just would like to pinpoint what exactly you mean.

@lschwartz408 I have dysautonomia and also GERD. For a while the GERD was so bad that I had ulcers and inflammation of my esophagus ( called Barrett's disease ). At that time I also had shortness of breath and discomfort in exactly the area you have pointed out. In my case it was all related to the GERD. After receiving treatment ( medications and dietary changes ) the ulcers and inflammation healed and I now only take protonix to prevent the issues. The discomfort in the midsternal region went away. I wonder if it possibly could be related to GERD in your case as well. Have you had a EGD?

YES - it beats an exit on a stretcher!

@Sarah Tee I am so sorry this is happening! I too had many bad experiences with certain medications and I know how scary this is! But I cannot imagine that it will permanently affect your BP. Whenever a medication caused side effects such as high BP etc I would slowly go off it. Most people suffering from autonomic dysfunction are highly sensitive to medications, and our already malfunctioning ANS may get triggered and respond in chaotic ways. It could be that the vasodilation caused by the medication triggers the ANS to compensate by constricting the vessels - hence the high BP. This would be called sympathetic overcompensation. I WOULD be concerned about your BP increase, especially since you have symptoms with it.

@MaineDoug I cannot follow any exercise regimen at all because from day to day my tolerance changes. So I simply do what I can each day. I also count walking and certain chores as exercise - mopping floors is hard core! Changing bed sheets is a work-out, especially when you do it to the theme song from Rocky!

I still take Protonix and will have to forever. Since HPOTS is chronic so are the GI symptoms, so the protonix keeps the stomach acid at bay to prevent ulcers and inflammation. So far so good for me!

Good job! I remember I had some headaches for the first few weeks on it too but the body adjusted. I always gave it a few weeks on a dose and once I felt fine I would go up in the tiniest increments and wait until I felt fine again.

@Derek1987 The ulcers and the barrett's were healed ( and proven so by several follow-up EGD's ) by a mixture of Protonix, Carafate and what they call GI cocktail, which consists of Mylanta, viscous lidocaine ( numbs the esophagus lining ) and phenobarbital. I also became disabled, found the right medication regimen for POTS and adjusted my dietary habits. All this together helped things to heal.

@Derek1987 I too have HPOTS, and I take Protonix as well, also for ulcers and barrett's esophagus ( now completely healed ). The GI problems were said to be a result from the sympathetic overcompensation - in other words high adrenaline all the time which is like being under severe stress always. Protonix does not help for POTS but can help with the GI symptoms that come with it.

The rehydration drip sounds good!

For me dysautonomia symptoms seem to come and go, and they have changed over time in my case. But I have also learned that a flare ( a sudden worsening of symptoms ) usually has a trigger like illness, weather changes, stress etc. Sometimes medications stopped working or needed to be increased/changed. What helps me to determine what is going on is keeping an eye on my BP and HR in addition to adapting to my symptoms. When I cannot be upright for any length of time I stay in bed and do exercises while lying down. When brain fog or presyncope/syncope are the problem I avoid any activities that require concentration or being upright. But often we cannot pinpoint what causes the symptoms and we just have to get through it the best we can.

@Sarah Tee all I can tell you is that with all the different meds I have tried I would stay on them for a while, except for clonidine ( which made me deathly ill and I stopped it after five days ). Dysautonomia makes us very sensitive to stimuli, and meds are just that, so we need to give our unregulated bodies time to adjust to ANY new meds

@Nin I also use a wheel chair - and sometimes a seated walker - whenever long periods of standing are expected. If I am in a big store or mall I use the electric wheel chairs they provide. I no longer feel insecure about this, despite the occasional judgmental frown - simply because I know that the attention I get from sitting in a wheel chair is better than the attention I get when I wake up from passing out.

@MikeO have you considered rotating injection sites between thighs and abdomen? Like right belly, right thigh, left thigh, left belly?

This is where we could see the pattern for me, with the my chart! I can go back and see exactly when the IV was given and the before and after labwork. One doctor started me on oral potassium as a result of the infusions, and another time a different physician said that I do not need to take supplements because of the dilution, only a follow-up electrolyte panel ( which always turns out to be normal a few days after infusions. )

@MomtoGiuliana just a thought - you mentioned that you also benefit from IV fluids for symptom flares. If the blood work gets drawn after the fluids were given it can "dilute" the blood to show an electrolyte imbalance when there really is not one. This has happened to me several times when in hospital - they gave me fluids and checked the electrolytes the next morning ( or same day after the infusion ) and the potassium level was low. Sometimes they would order potassium supplements for this.

Hello @maggiez, welcome to this forum. I am so sorry that you have to go through this! Is it possible that you have hyperadrenergic POTS? The symptoms you describe that started after Florinef sound exactly like HPOTS symptoms ( I have it, so I know what that is like 😒). Also - if you have the hyperadrenergic type then Florinef is essentially contraindicated, hence maybe the strong reaction? The best tip I can give you is to try to avoid complete bedrest at all cost, no matter how hard it is to get going. Bedrest causes deconditioning which causes POTS to worsen. So - when in such a state that getting up is nearly impossible I do abdominal and leg-strengthening exercises in bed, I try to sit up at least twice each hour and as soon as I can I start to get up and move. Drinking is important, but in my case the thing that helps most when in such a state are IV fluids. They help regulate the cardiovascular system by maintaining even pressure within the vessels as well as increasing your blood volume - both essential in treatment of POTS. Do you have a PCP or cardiologist who can give you an order for some? My doctor used to give me a standing prescription that - when needed - I could take to an urgent care clinic or Infusion center to get the IVs. When I was unable to get them I would go to the ER and they would infuse me. In a case like yours an ER visit would be appropriate as last resort, because it is difficult to get through this and IV fluids can turn it around in an instant. Also - have you contacted the physician that ordered the Florinef? Hang in there, call you doctor and be hopeful!

@Sarah Tee I am so sorry! I want to let you know that a counselor can be extremely helpful in cases of emotional problems from chronic illness. When I became disabled ( after fighting for years to keep working despite passing out and having seizures at work all the time ) I sank into a deep depression. I felt useless and was full of self-pity. With the support of my wonderful PCP, family and friends as well as a counselor I regained my joy for life and my self worth. Becoming chronically disabled leads to all the stages of grief - and we all deal with grief differently. We have videos about this on our you tube channel, you may want to visit this. I also posting a link for information about NCS, since you mention having more episodes. I have NCS in addition to POTS and know how horrible it is to experience these episodes. https://www.dinet.org/info/ncs/ Be careful, and lie down as soon as your feel foggy - no matter where you are! https://www.dinet.org/info/ncs/

@MikeO maybe you need to go to a tanning bed? Or else six weeks in the bahamas? Or at least florida?

I do not absorb oral or sublingual B12, and my levels are low when I do not substitute. I have been getting B12 shots for years and now my levels are great. Vit D usually gets given as a booster dose for a few weeks and then 2000 a day as maintenance

@Neomorph It is my understanding that with EDS there is too much collagen in the joints ( hence the hypermobility ) and blood vessel walls ( preventing the vessels from constricting properly ) In order to attempt to pump enough blood to the vital organs the ANS signals for the heart to pump faster = POTS. Since even with this compensation there often is still a lack of blood reaching the brain there commonly will be symptoms of cerebral hypoperfusion = brain fog, FATIGUE, etc.

Urrrrrrrrg! Sorry about that, that is so ignorant!