Pistol

Hello @gossamer4448 - I have hyper POTS and get adrenaline rushes. In my case they are not constant but they seem to come more often when I am in a flare. And no - I do not have them constantly, and they are not always the same. Sometimes I can sit them out and other times I end up having syncope or seizures. If I have stress or am ill the rushes can be frequently whereas in a good spell they occur much less often. Since I am controlled with medication and live within my limitations I am lucky to rarely get one. Also - in hyper POTS most people experience high BP with them - is this the case for you also? Have you seen an autonomic specialist and have you had catecholamine testing? The treatment for hyper POTS is different than some other types of POTS since the symptoms you describe are caused by excessive vasoconstriction rather then vasodilation. --- Best of luck!!!!

Hello @Fifi - I am sorry that you are so ill. I am familiar with hyperadrenergic surges, so I do know how awful they can feel. If you feel that what you are experiencing comes from too much norepinephrine then you need to have your catecholamines checked. Unfortunately POTS symptoms are not clearly defined - we can have similar symptoms with different causes, so unless confirmed by testing it is impossible to determine why you are feeling this way. It is not uncommon for dysautonomia to be triggered by a viral infection, so your EBV infection may have triggered an abnormal response. I assume your doctors will continue to look into the cause of your symptoms - do not panic. Until you are properly diagnosed you may want to follow the typical POTS routine: hydration, salt, compression, exercise. In my case SSRI was one of the first meds prescribed and I have seen improvement from it. Others have seen significant improvement from SNRI - so yes, in my experience as well as current studies SNRI can be helpful in the treatment of POTS. If you have dysautonomia you should see an autonomic specialist - not all neurologists or cardiologists are familiar with the intricacies of treating dysautonomia. You are experiencing very scary symptoms but do know that with proper treatment there can be improvement. Many members on this forum have improved - I am one of those people. Just follow your doctors recommendations - it may be scary to start a new medication but without trying you will never know what helps. Be well!

My husband has SIBO and suffered very much with cramps, bloating, diarrhea etc. He has been taking probiotics and prebiotics and he has improved a lot.

Dear @MaryB - I also have NCS, as well as POTS. And I also have had 3 colonoscopies, the first one ended up with a seizure during the procedure and the second one was done as an observation stay in the hospital to get IV fluids during the prep. No seizure that time but a nasty flare and 2 syncopal episodes after the procedure. The anesthesia people in my local hospital are aware of my dysautonomia and are very careful with sedation due to the POTS. The latest colonoscopy went over super well - I now have a port and get weekly infusions. So I did the prep while infusing for 24 hours at home and had 0 problems during or after the procedure. So - I would inform your doctor of your history of NCS and ask for IV fluids. If this cannot be done the night of the prep then ask for them the minute you get in the door for your scoping. They do that for me with any procedure ( EGD, surgeries etc ) and it is a well known fact that extra IV fluids help prevent syncope. Please do not reschedule your colonoscopy - it is very important you get this done, even IF you faint. And if possible have someone with you during the prep to prevent injuries from falling. Best of luck - be well!!!!! And I hope the results will be good news!

I also saw a PT and he showed me exercises that I can do lying, sitting or standing. This way I can exercise every day but if I have a bad day I do the lying down ones and on a good day I do the upright/ sitting exercises. Also - elastic bands are very good for exercising. You can get them on amazon or Walmart. There are also books on how to exercise with them. And they come in different strengths. By using them you can exercise muscles AND joints without moving too much to set off your symptoms.

@WinterSown - is Dr Howzyerbutt really a butt-doctor? That is hilarious!

In my case I have ( in addition to the tachycardia ) tremors, chills, chest pain, ice cold hands and feet, very high BP … often this escalates into syncope or autonomic seizures. This last one is not a common symptom but some people get these due to cerebral hypo perfusion ( no blood flow to the brain from severe vasoconstriction ). I am wondering if your cold, prurple toes could be Raynaud's syndrome? I have that and what you describe sounds similar. This is caused by spasms in the blood vessels of the feet. I had it since childhood, long before I became acutely ill with POTS. I was told that this is also an ANS dysfunction, so I believe it is the same mechanism as hyper POTS. I also have a type of angina that is caused by spasms of the coronary arteries, it is called Prinz-metal angina. My cardiologist states that this is also the same mechanism. In my case everything points towards sympathetic overcompensation, which also would explain the high norepinephrine levels. Please make sure you point out your purple cold feet to the specialist when you see him. Be well!!!!

@mclark - yes, as far as I can tell your norepinephrine level can be considered elevated in the hyperadrenergic range. Mine was 900 (had no symptoms at that time ) and I was diagnosed with hyperadrenergic POTS. So your doc is wrong by interpreting this as normal. A HR above 120 while standing without a drop in BP is also indicative of POTS. So are your symptoms. A good autonomic doctor would know that we do not just go by numbers but also by symptoms. In your case you have both, so I do not see why they say your testing is normal. I would question your PCP on this. What treatment or meds ( if any ) are they recommending? I have hyperPOTS so if you have any questions about what I tried and what helped you are welcome to pm me. Hang in there and be vigilant - you seem to be more informed than your PCP!!!

@potsiebarbie and @MeganMN - as the name says, POTS is a SYNDROME, that means it is a combination of symptoms. Tachycardia is only one of them. All the other symptoms are still there even if the tachycardia improves. That is why many docs do not even want to touch POTS - it is too vague and frustrating. In my case it took years and many meds as well as lifestyle adjustments to come to a place of balance, and even that is a fragile one. Dysautonomia affects the whole body AND mind - and all of the symptoms paly together. So - yes, unfortunately we can not just treat the tachycardia ( wouldn't that be nice, though? ). Every symptom has it's cause and therefore a treatment, we just have to find it. I know - that sounds discouraging but it is not, actually. It gave me courage to try different things until we found the right combo. Hang in there!!!!

So sorry @WinterSown! I think that this condition would be treated by surgery - no?

Dear @Potsies - I am absolutely shocked about that doctor that refused to treat you. That is malpractice!!!! Please do not go back to that quack! -- You are doing a really good job of treating yourself, I am impressed. I agree with what others have said - you should ask your doctor for beta blocker or ivabradine. You mentioned in your initial post that your feet go cold and blue - is it only when standing or dangling or is it all of the time? I have hyperadrenergic POTS ( too much vasoconstriction ) and my feet are blue and ice cold rather than purple or red only when standing ( as is the case with blood pooling caused by too much vasodilation ). -- I minded the fatigue the most as well. In my case my meds and weekly IV fluids were the solution. Hang in there and keep doing exactly as you are doing. I know the frustration of not having a doctor to go to for advice and having to be patient until the appointment with the specialist. I had to wait one whole year to see mine and in the mean time dealt with ( and fired ) 5 ignorant cardiologists. But once I got in with the specialist it was sooo reassuring b/c everything I told him he had heard many times before. When you do not have to feel like you have to justify every symptom it is very freeing. And he WILL have an answer, you will see. Best of luck to you!!!

Dear @Sam goodrich - it was years ago so I do not really remember. I think it was several weeks but back then I was really unstable. I believe - and this is just a theory - that the flu shot triggered the immune system and that caused the flare. I guess that is what the flu shot is supposed to do - build up immunity. And that simple step - I believe - caused the flare. We are so sensitive to any changes within our bodies that something like that can do it. Hope you get well soon - hang in there and hydrate!!!

Yes - I had a major POTS flare following my only ever flu shot - but I am still not sure if it was the shot that caused the flare. Anyway - I have not had a flu shot since then. ( This is not what I would recommend but in my case I would rather take the risk of the flu then getting a flare. ). I guess I am a scaredy-cat.

@potsiebarbie - I think you found a good chiropractor. Yes - numbness should be looked into. I know of several people who saw a chiro and should have seen an MD instead. I their case the chiro DID treat them and later they - as well as the chiro - realized they should not have been adjusted. So - good job, chiropractor, for putting YOUR safety first!

@lamp_girl - I took clonidine years ago and was told to take 1/2 tab twice daily. I could only tolerate 1 week of it due to it making me so tired. Then I was told to stop the evening dose for a week then the am dose. The first night I stopped the pm dose my BP sky-rocketed and I had a full blown panic attack - I tought I was dying. Be careful with this medication, it is very powerful and nothing to fool around with. Best to check with your doc.

Good for you @WinterSown - the insurance companies mostly look at if any of the test he ordered were duplicate or unnecessary. That way hey can get him for Fraud. I have never went as far as reporting a doc to the state but I would totally do it. The only reason these docs get away with their snobbish and ignorant dismissiveness towards us is because we let them. They work for US and we do not have to put up with them. If we have a contractor working on our house doing a bad job - we fire him and ( in this state ) report him to the licensing board. Tht way they will not do a bad job to the next person. It should be the same with docs. --- If the doctor is part of a group or hospital you can also start an official complaint to the quality assurance department. I have done that before and the doc in question had to go in font of a peer Review ( other docs investigating the incidence ) . /then they decide what action or punishment is appropriate. In my case there was disciplinary action and this ER doctor no longer is allowed to treat me. Good riddance!

@lamp_girl - in my case these episodes are not actually dangerous ( they are not life-threatening ) but they are life-altering. If you are experiencing these episodes you must be seen by an autonomic specialist. In my case since I have been under the supervision of a renowned specialist I have been improving. I take several meds ( PM me for the names ) and am disabled for 5 years. Between the meds, the limitations on activity, the usual trinity ( hydration, salt, compression ) and - most importantly - weekly IV fluids I am feeling good and have been able to avoid episodes for the past 3 months ( a record ). Yes - it is VERY scary when you get these but there are ways to get them under control. You have to have an understaning and educated physician by your side - without my PCP and specialist as well as local cardiologist I do not know where I would be today. But to assure you - you will not die from these episodes. But you will not stop being scared by them because the feeling is a part of them ( not the cause ). Please make sure you get in to see an autonomic specialist, which for most of us means travel out-of-state.

Dear @gossamer4448 - welcome to the forum!!! - I also used to get that dissociation feeling and empty-head feeling. I used to get it often when I was not yet properly medicated for POTS. My docs explained that this is due to hypo-perfusion of the brain from either low BP due to vaso-dilation or due to excessive vaso-constriction. In both cases there is decreased blood flow to the brain. Having a period and having a cold can both trigger POTS symptoms to worsen, so it is not really uncommon to feel much worse. Lie low, rest, hydrate … but remember to be upright and exercise ever so carefully to avoid becoming debilitated ( which will also worsen your POTS as well as delay recovery ). Best wishes!!!!! Be well!!!!

@lamp_girl - yes, I have hyperPOTS and when I am having a surge I get weakness, slurrd speech and sometimes have difficulty breathing. I also have tremors and chills and ICE COLD hands and feet. Many times I will faint or have a seizure then. I was told that these are considered to be pre-syncopal episodes, even if they do not end up in full syncope.

I do not know of anyone in Kansas but I do want to share that most of us have to travel out of state to find autonomic specialists. Have you referred to the physician listing on this site?

Dear @Sig - I am sorry. Yes - once you are in a fullblown flare it can take long. Especially since you have to recondition yourself all over again. What I have done in those instances is keep taking my meds, do the usual hydration/salt/compression regimen and - most importantly - get up and exercise. This is the one thing that helps your body regain strength and balance. Also - in my case IV fluids over 12 - 24 hours help significantly. They interrupt the faulty ANS signaling and give you strength. They help most POTS patients but often are not easily ordered by physicians, especially in Europe. Try to talk to your doctor about IV fluids - or go to ER for them. Best of Luck!!!!!!!

Does your insurance plan require referrals prior to appointments? If so your PCP( or referring physician ) usually does all the paperwork and they will work on eligibility with your insurance. If you are not covered they will notify you. If you do not need a referral you can either read your policy about out-of-network visits ( yiu can find out what percentage you would have to cover yourself ) or you can call your insurance. In my case the specialist was not on the plan but my PCP filled out a ,medical necessity form as well as requesting the out-of-state specialist because there is no specialist in my state. The visits were covered from then on.

I have read from other members that beta blockers are generally not tolerated in MCAS.

I would stop exercising at night. When you do so your adrenaline increases ( this is a desired effect ) but in many POTS people it does not go down as quickly as in normal people. So when you go to bed your levels normally decrease after 3 hours so you can go into REM sleep. Due to the exercises your adrenaline levels are still so high that instead of falling deeper asleep you become right awake. I used to have this happen to me as well ( just without the exercise ). I am more energetic in the mornings so I do all my work then. Afternoon I start taking it easy and am less able to do things. When 7 pm cames I am so fatigues that I usually go right to bed. Since being inactive closer to bedtime I sleep much better and no longer get the adrenaline rushes you describe.

I realize that I can do well with chores as long as I do my exercises. When I am bad for a few days and are inactive then when I start being active again all my joints hurt and even wiping the counter or folding the laundry can cause soreness and shortness of breath. Then I take it easy with the chores and start my exercises ( light back, leg, arm and core ) and do like 3 minutes then 5 minutes etc over 2 or so days and I feel better and my endurance returns.