Pistol

@Sondra - I respond well to carvelidol (BB) and it does not affect my - at times low - BP. BP goes either way but it does not drop too low on it. Also - if your night time episodes cause your HR and BP to increase then I would take the BB at night ( I take it twice a day). Many people benefit from clonidine for these attacks ( although I did not tolerate that but many people do ). Maybe discuss these meds with your cardiologist?

Yep - I agree about the TTT, I think it is one of the most sadistic tests they could come up with! And no - I was not allowed a cell phone but I think they might let you keep an Ipad or something like that. I am not sure if they would but I would ask. It will be quite boring! At least they let you watch TV. Hope all will go OK for you - keep me posted!

@bombsh3ll - when I was unstable with high NE levels I used to soar all of the time, never able to rest, even at night. Once I started SSRI, BB and other meds for my hyperPOTS symptoms I developed fatigue (may also have been caused by depression due to becoming increasingly disabled at the time). I also developed cognitive issues, memory problems and ADD. So when I started Ritalin it helped for all of those issues but in return gave me more energy to be able to exercise which in turn enabled me to sleep better. It is a matter of finding ONE thing that will interrupt the evil cycle - then we can get the upper hand (to a degree).

Thank you @WinterSown to remind us of our caretaker's sacrifices. I sometimes get so used to my husband accommodating my limitations that I take him for granted. I will share your post with him and thank him from the bottom of my heart!

@p8d - Ritalin and guanfacine really helped me beat the fatigue. My specialist actually recommends modafinil but my insurance does not cover that. The Ritalin gives me enough energy and cognitive abilities to function in the mornings, until about noon. The guanfacine has helped with that also - and it controls my HTN.

If you are comfortable with your doc then you should trust his judgement. Try his approach, take the meds he suggests. It is ALL trial-and-error for us. Even my - world-renowned - specialist tries meds to see if they work and then goes on to other ones if they are not helpful. Be glad you have a doc who listens and is aware of dysautonomia and the special considerations we need. Work with your doc! And yes - send hi a message about your concerns about the medication.

@ShiEksdee - I also had a stay in the EMU ( Epilepsy monitoring unit). It's pretty boring and you have all of this goop in your hair and everything is on camera. But on the 3rd day I passed out and the heart monitor showed tachycardia but the EEG showed my brain completely flat lined!!! This is due to my syncope being caused by sympathetic over compensation, the ANS constricts all blood vessels and there is no circulation in the brain. This test confirmed - along with the elevated norepinephrine levels - hyperadrenergic POTS. And NCS - just like you have. I hope your test will show something - bring some good books and lots of snacks!!!!

I agree with @Mistri_The_Squirrel - Cannabis effects both HR and BP. I know of someone who often gets presyncopal from it. On the other side it may help with anxiety and the feeling of being hyper during a flare. I would be cautious.

In my case it was just proof: when my BP got too high or too low and I started taking either seizures or syncope I would get admitted to the hospital overnight for IV fluids and IMMEDIATELY all of my symptoms subsided and my VS turned normal. Every time, no exceptions. So finally - after having years of being admitted for IV fluids overnight every 6-8 weeks - I got a port and now am starting to receive weekly infusions at home. There are studies out there that you can give to your docs that prove the effectiveness of IV hydration for the treatment of POTS.

I also struggle from intermittent insomnia and it is proven that the less we sleep the worse gets the dysautonomia. When I am sleeping well then I feel good, when I am not sleeping then I cannot exercise etc - just like you describe. When I have nights when I wake up and cannot go back to sleep I find that it is better when I get up and read or do something for a while instead of lying in bed and getting frustrated. After an hour or so I feel tired enough to fall right back to sleep.

@blizzard2014 - does your doc know how bad you are feeling? The symptoms and readings are concerning enough that you should be evaluated. Definitely sounds like your insulin needs adjustment, at least for the time this flare lasts, the episodes of lethargy and low BS can be serious. Please see your doctor ASAP, even is you do not feel well enough to go ( especially then!) Be well!!!!

@ShiEksdee - I am sorry to hear about your struggles. I also fainted on my first TTT and had another done that confirmed POTS but was misinterpreted by the cardiologist ( who was not familiar with POTS and is an EP ). My autonomic specialist diagnosed me with hyperPOTS and NCS. What are you taking for your tachycardia?

Well - monopoly? risk? scrabble? AND - pie face?

I use the same principle I use with my daughter: if you do not have room for new things then you need to get rid of old ones before you get new stuff. In our house we go through closets and cupboards every spring and fall and discard anything we have not used or no longer want. That way we make room for new things. This applies also to spice racks/freezers/closets/sheds/attic …. there are always things we no longer need to keep.

@jklass44 - acceptance is a big one and does not come easy. It took me years b/c after loosing my RN job to POTS and mostly housebound I had lost my sense of who I was. I felt like if I accept my condition than I have to accept "being useless". But then I found the dysautonomia project and bought two of the books for me and my PCP. I encountered many ER docs who had no idea about POTS and the task of advocating for myself and fighting them was soooo frustrating! I reached out to the local college and started holding classes about dysautonomia and OI to the nursing students. They always find it very interesting. I even had to go to the ER once and the RN treating me knew about POTS because of my class!! I offered talking to the medicine students too but that - of course - did not go anywhere ( "who does she think SHE is?). There are many avenues to educate about dysautonomia. I found that our friends and families are very hard to educate. My husband is very knowledgeable about it but his parents or friends of ours seem not to understand or want to learn, partly because it is so complicated. --- I encountered a few POTS patients over the years and was able to inform them of resources and also my cardiologist - wonderful man - gives out my email to other dysautonomia patients so I can share the many online resources. This has given me a renewed sense of being helpful despite my disability. --- I wish you well in the task of reaching acceptance - it will come!!!!

I hold classes about dysautonomia at our local college, share new studies with my docs and work with local ER's and PCP's to educate them about POTS. I am also in the process of starting a local support group for dysautonomia sufferers.

@Peter Charlton - I will pm you

I am sorry @p8d - this stinks! But I see in myself that the BP fluctuations change with different things - apparently age being one of them. I have found GREAT relief of fluctuations and symptoms with IV fluids, I am starting them at home with a port this week. I hope this will bring some stability - we will see. I understand that this is not a preferred option and also that ther are many other - more accepted - treatments out there for many. But for me there has not been anything more effective in controlling my high BP than IV fluids. --- I hope you will also find a way to live with the fluctuations. I am here for you if you need me!

@Peter Charlton - glad to hear you finally had proper testing. I have hyperPOTS and - yes, the simple act of talking or even reading can cause symptoms of elevated NE levels. When I am in a bad spell the very simplest things can cause a surge: talking, hearing birds chirp outside, the phone ringing, TV/radio …. and of course the worst is getting up and down often. When I get that bad I practically have to lie in bed in a dark room and not even interact with my family (which of course is not possible ). Sometimes - if I have a flare with extreme hypertension and resulting syncope or seizures my PCP has to put me in hospital for fluids for 24 hours. The bedrest, quiet and fluids stop the flare every time. --- This is not a practical solution of course but I wanted to share that indeed - talking can be enough to irritate the ANS. --- Please let us know what your testing showed. You can also PM me if you want - I have learned a lot about hyperPOTS through the years and can share some of my experiences with different meds and treatments if you are interested. Best of luck!!!

I am sorry about your situation. With all that you are experiencing I truly would recommend to travel to a prominent medical facility or autonomic specialist. I live in WV and had to travel to both Tennessee and Ohio for treatment and Dx.. Medicare covers any specialists anywhere in the US and Medicaid will pay if there are no specialists for your condition in your state. Medicaid often offers travel assistance as well. There might be specialists in alabama but I am not aware - did you check the list on this forum? --- I hope you will find some help soon, best of luck!

@p8d I am currently peri-menopausal and my BP fluctuates up and down. I do not tolerate the high BP at all. My OB/BYN does not want ne to take HRT because she says it will increase the BP. So I started a supplement called chaste-tree 440mg twice daily, it has greatly improved the hot flashes. My autonomic specialist told me that the hot flashes cause the BP to drop during the episode and in response the BP will shoot up after. The supplement has helped to minimize the flashes and in turn aides in keeping my BP somewhat stable. --- My mother has POTS also and when she was my age (many years ago) no one knew about POTS but she was highly symptomatic during menopause and then after developed plain hypertension. This would be much easier to treat then both hypo/hypertension. There is also something that can develop - according to my specialist - that causes supine hypertension and upright hypotension. This is rare but very difficult to treat.

I agree with @jklass44 - orthostatic hypotension and NCS are a type of dysautonomia and both cause a drop in BP, but elevated BP as well as BOTH (hyper-and hypotension) are seen in POTS. So your specialist is actually incorrect. But I am very glad you are getting tested for Pheo - that is usually a rule-out diagnosis everyone with POTS symptoms and elevated BP should be tested for. Good luck!

Dear @KristaKupcake - I am sorry you are experiencing all of this. I know - as do many others on this forum - how scary this all is, especially when you are first starting out on this journey. Ask your doctor if you could try Antivert ( meclizine ). This was prescribed for me when the dizziness is severe and it helps. I also agree with @Mbritt724 about the compression stockings. And please do try to get up as often as your symptoms allow. One of the most common consequences of these symptoms is that we end up lying down all of the times because it makes the symptoms bearable - but it WILL make them worse. The more we can be upright ( even sitting ) the more it will aide in resuming orthostatic tolerance. When I am bedridden I do leg exercises ( lifting legs, bike riding movements, touching the right knee to the left elbow and vice-versa ….) and I try to sit up and lift 1 lb weights in all directions, you can use water bottles if you have no weights. All these exercises are easy to do but are very effective for your circulation. --- I wish you only the best, be well!!!!

Thank you all for your compassion and I appreciate your responses!!!!!

Yes - I have both hyper-and hypotension. When my BP is low I become clammy, strong heart beat, weak, feeling hot or flushed. This is very different from when I have high BP - chest pain, cold hands/feet, chills, tremors. This can change from minute to minute.