Pistol

@Scout I am so sorry you are going through this. I too have HPOTS and know exactly what you are experiencing. In my  case the docs already know when I get a flare I need IV fluids to stop it. I used to crawl into the hospital and after two bags of IV fluids came out skipping and hopping. For the past four years I had a port and get fluids twice a week, which has cut my episodes down to zero, and flares are rare and manageable. Maybe your doctor is open to giving you an order for IV fluids?

@IAMDYS Have you checked our physicians list? Click onthe physicians tab at the top of our main site. There are physicians that specialize in dysautonomia listed from all over the world. 

@MaineDoug I am so very sorry this happened to you! And that they are rescheduling the hip surgery. Sending you hugs and best wishes! 

@Sarah Tee Yay! Keep up the good work, and enjoy summer!

@Abe I was prescribed clonidine years ago for HPOTS with hypertension but had to stop taking it after five horrible days. I did not tolerate this med at all. But please know that there are many people who do very well on it and whose BP is regulated on clonidine. 

Unfortunately with dysautonomia we have to be brave and try new meds on a trial-and-error basis. Most of us are very medication sensitive, which makes it harder. I have learned that only by experimenting could we find the right med combo for me. You wont know if it works for you unless you try it. Like I said - many people tolerate it very well. 

@Sarah Tee I had two neuro-psych evaluations due to head injuries obtained from syncope and seizures. it is a three hour long exhausting test of all your brain processes such as cognitive function, attention span, memory, color awareness, language skills, number recognition, hand-eye coordination, ability to use your hands, drawing by memory etc ... and they also take a detailed history and psychological evaluation. In my case they thankfully ruled out any serious issues but diagnosed me with ADHD. 

The neuro-psychologist that I saw did not prescribe any medications and did not treat anything medically, although she was aware of dysautonomia. 

19 hours ago, RecipeForDisaster said:

Like my favorite ever, a gift certificate for eyebrow plucking an hour from me. I wouldn’t care about an eyebrow if it was the last body part I had left, and I rarely go near there.

🤣

@RecipeForDisaster - gift cards for online shopping! That way I can buy what I want or need when I do. And I can use it for whatever I may find useful. 

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

On 10/19/2023 at 3:01 PM, Macho319 said:

About 20-30 mins after I take it I feel this strange pressure/ache in my chest/neck area. It doesn't hurt but it seems like super concentrated anxiety or adrenaline in only that area.

@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?

2 hours ago, Sarah Tee said:

They didn’t mention headaches or pressure in the head though.

@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!

5 hours ago, MikeO said:

Foods seems to play out with folks with Dysautonomia or perceived (POTS) which is just a symptom of a ANS issue.

@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? 

19 hours ago, MaineDoug said:

And you can make quite an exit with a walker!

YES - it beats an exit on a stretcher!

2 hours ago, Sarah Tee said:

Frightened that this has permanently affected my BP, which has never been this high, ever.

@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!

17 hours ago, Derek1987 said:

Do you still take protonix or anything for it since adrenaline(hyper pots) is the source?

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! 

1 hour ago, Sarah Tee said:

I went down to a lower dose for a few days, then back to the starting dose. No headaches! Now I just have to slowly increase as per doctor’s schedule and see if it works for my OI.

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. 

2 hours ago, Derek1987 said:

Are you saying your barrets was healed? Or just the ulcers.

@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!

16 hours ago, akj said:

 And because the usual pattern has changed I wonder if something else is going on or is this another Dysautonomia symptomatic pattern?

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. 

23 hours ago, MikeO said:

i do get a feeling i might run out of real estate before the poke marks heal up.

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