Pistol

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@RecipeForDisaster - I would definitely bring this to the attention of your autonomic specialist, since he was the one who p-ordered the collar.

@Dystasysta I am 54 and have been loosing a lot of weight. I also used to have the "thin legs and barrel-belly" shape but have found that diet changes took care of that for me. A dietician told me that I should avoid raw veggies and fruit and steam them instead, avoid carbs but push protein. I too cannot tolerate Ensure etc since they make me sick, so I have found protein bars do the trick for me, I eat 1/2 a bar at a time but several times a day. I avoid sweets, and caffeine ( except for the morning joe ) and alcohol. And I am with you on the chicken and potato!!!!!! Plus - fiber and probiotics help a lot with the bloating!!!!! And yoghurt.

hello @Dystasysta - yes, what you describe is very typical for HPOTS, I have experienced it a lot. In HPOTS our sympathetic NS overcompensates for standing up and being stimulated, so we are essentially in a constant fight-or-flight mode. The symptoms of this response are what you describe: blurred vision due to pupil dilation, elevated BP that can suddenly drop, need to urinate ( bladder emptying is a common symptom, that is why we pee ourselves when scared ) and sensations like electricity in our legs ( the urge to "flee" ). So, as you see, this is what happens when the ANS triggers the dumping of adrenaline. Here is an article that explains it What Happens to Your Body During the Fight or Flight Response? – Health Essentials from Cleveland Clinic For me this used to get so bad that I actually had autonomic seizures! But I have conquered this for the most part. Of course proper medication is essential but even with that I can still get these spells. What has helped me the most is STOPPING whatever I am doing as soon as I notice the first symptom - for me that is usually a pain in my chest and a weird feeling in my legs, like fullness or heaviness. As soon as I feel this I stop doing what I am doing and lie down, no matter where I am. I also prevent anything that I know will trigger it - prolonged standing ( I use a bar stool at the kitchen counter, a wheel chair in stores etc ), exercise ( I only exercise when I am well rested and know that I can rest afterwards ) and stimulation like phone calls or computer time. Over the years I have learned to listen to my body and follow it's prompts, and with this I have overcome many of the most dramatic and disabling symptoms. Of course it is not ALL up to us - a carefully and painstakingly tested medication regime was needed in addition to the lifestyle changes and adjustments, so simply doing the steps mentioned is not enough. They have recorded these attacks many times on me on both Telemetry as well as EEG - they are caused by excessive constriction of the blood vessels due to too much adrenaline. This would cause tremors, chills, cold hands and feet, racing heart, blurred vision ... beta blockers were not enough to stop them. So what has helped me were calcium channel blockers - vasodilators that can prevent the severe constriction. However - I am not sure how vasodilators would affect MCAS, since histamine is a vasodilator. Are you on H1/H2 blockers for the mast cell issues?

Hello @starshine - welcome to this forum! - Yes, insomnia is unfortunately a common problem in untreated POTS. It seems to happen due to adrenaline levels not dropping to accommodate REM sleep, as it normally should happen. That is why you wake up with racing heart etc. For me this was a problem for years, and I did not find relief until I had to become disabled and also had found proper medication regimen. What sets insomnia off for me is overdoing things and becoming too stimulated, whether this is by exercise or mental or emotional stimulation. I find that every time I push myself to do more than I know my body can take I pay with insomnia and bedrest. So finding a healthy balance of what you can do ( rest and activity carefully balanced to your personal abilities ) and trying to find a healthy routine were a necessity for me. Only once I had to stop working and was able learn what that looks like for me did I find relief. For me this involves a lot of rest but also exercise ( rowing machine and mild aerobic exercises as well as household chores ), having the same daily routine ( up at 5, to bed at 9 ) and - MOST IMPORTANT!!!! - stopping any activity as soon as I find it is getting too much. This may seem unrealistic to you but it is what needs to be done for me in order to be able to stay on top of my symptoms. When I am overstimulated and normally would not be able to sleep I take a low dose of Lorazepam, this helps me to go to sleep on those nights. But due to it's addictive properties this is only for really bad days, I use it maybe twice a week. Many members on this forum are suffering from insomnia and try different methods like no electronics in the evening, no heavy meals after 6pm, light and noise cancelling devices etc. Some people take melatonin or herbal teas before bed. You might search the forum for some posts about this subject, there have been many posts that might be helpful to you. I am so sorry you are having this very difficult to live with symptoms, but know that it can be overcome. And talk to your doctor about it. When we don;t sleep our symptoms get much worse, b/c we are in constant stress mode.

Well - LR does not stick around longer, rather the EFFECTS are longer lasting. @Sarah Tee - the risks with IV fluids are only high IF YOU NEED A PORT to infuse them, like for long term treatment. For outpatient treatment on an as needed base they usually are given through a peripheral IV access, like when they take a blood sample. I used to have this done at an outpatient center or even the ER. There are minimal risks involved with this, problem is you have to stay at the center for the infusion. For me a 4 hour infusion helped for 3 days on average, and was certainly ALWAYS a lifesaver to end any flares! Many POTS patients here in the US have standing orders from their docs to get infusions on an as-needed basis, which helps to both prevent and treat flares.

Hello @SnowBird312 - welcome to the forum!!!! I am so sorry you are going through all of this! It's a good thing that your brain fog and dizziness have improved. i am wondering - you said your HR has not come down at all. Is Metoprolol the only beta blocker your doctor has ever prescribed? For many of us just one - or just any - beta blocker does not necessarily work. Some do better with Propranolol or Carvelidol. Personally I tried 3 BB's and Carvelidol is the only one that has helped for the high HR. Also - how much Metoprolol do you take? In most cases once we are sure we can tolerate a med it needs to be slowly increased. For example: I started with 3.125 mg of Carvelidol and then 6.25, then 12.5 then 25 ... as you see, it takes a while to find the right dosage. So - most of us need to go up with the dosage and if that does not work we need to try another BB, and if that does not work maybe Midodrine or Florinef ... depending on the mechanism of your type of POTS. Also - have you tried compression hose?

@CJ65 - I too had very good results from Wellbutrin! My autonomic specialist ordered it on top of Lexapro, due to my problems with fatigue. It really helped, but unfortunately I had to stop it after 3 months b/c it gave me very bad acne ( an adverse effect ).

I would like to state that Ranitidine ( Zantac ) is no longer safe to take and has been pulled off the market

I second everything @cmep37 said: when IV fluids were not available I would rest, rest and rest, with bed exercises increased to tolerance every hours or more. Ever so slowly I would always improve. And for me too it was a learning process to not get too disappointed with every flare. I used to think each time I would be stuck in that flare but I always recover. Today I just shrug my shoulders and rest until it blows over!!!!!

@cmep37 this so accurately describes what it is like! The exact same thing happened to me: do a bit, realize it was too much, recover with rest and when feeling better start this same scenario all over again! But thankfully - as you - I have found a way ( with medications, treatments and strictly following my limitations ) that I now know what I can and cannot do, and by listening closely to my body I can avoid flares for the most part!

@CallieAndToby22 - yes, I can relate. Until recently i was unable to be active, could not even do minor house work and could not be on the phone/watch TV/do computer work etc for any length of time at all. Anything pushing me over my limit ended up with me in bed, ear plugs in ears. Diltiazem and Carvelidol helped with the HR and BP, Ritalin gave me about 2 hours of energy in the morning and SSRI helped with fatigue to a degree. What has helped the most are weekly IV fluids and ( recently ) Plaquenil. I have been on the Plaquenil since January ( for joint pains and POTS ) and it has given me tremendous energy. I can be active now, do chores ( even gardening!!!! ) all day in increments, with rest in between. I do not get worn out by the slightest activity and feel so much more normal. And the added activity in turn stabilizes my HR and BP. I honesty feel the best I have since onset of POTS 11 years ago! And:we are halfway through 2021 and I have not had a single syncopal event or seizure!!!!!!! I hope your docs will be willing to experiment with fluids or different meds, like mine did. I had begged to try Plaquenil for years but the rheumatologist refused, he wanted me to take Prednisone, which made me crash. So my autonomic specialist ordered it for me, keeping in mind that there is new evidence out that POTS is auto-inflammatory in nature in many cases. Of course it is not covered by insurance ( FDA approved diagnoses are RA and Malaria ) but it is cheap. Wishing you the Best !

I have been on Escitalopram ( Lexapro ) for years and do not experience hair loss.

@Abe - I have been in your shoes many times, and the only thing that helps me in a severe flare like that are IV fluids. I used to be unable to stand or walk, and had to crawl to make it to the bathroom without passing out. This often ended up with me having to go to ER for IV fluids, and my PCP usually admitted me to hospital for 24 hours of IV fluids. This ALWAYS, without fail, fixed me right up. MY high BP and HR would drop to normal and I could walk and be active again without passing out. After several trips to ER and hospital my PCP gave me a standing order for IV fluids as needed ( 1 - 2 liters of NSS over 3-4 hours as needed ) and I could go to an infusion center or urgent care center to get the infusions. In my personal experience, IV fluids could get you out of your current crisis, they are a known, effective and often prescribed treatment for POTS flares and POTS exacerbation. Here is an article related to this, written by Dr Grubb - a famous pioneer and authority in everything dysautonomia related: Effects of intermittent intravenous saline infusions in patients with medication-refractory postural tachycardia syndrome - PubMed (nih.gov)

@Jyoti Hi - the HR of 155-160 BPM should be the EXERCISE rate for your age. In normal people this HR should be achieved with exercise to ensure proper circulation and heart health. However - the problem with POTS is that we get higher HR than that just by standing. The other thing is that we do not have the ability to control our HR, often not even with increase in salt and fluid and wearing compression garments. So, IMO, they are both right and both not helpful. It would be nice to keep your HR below 95 but the truth is that with dysautonomia we are not necessarily able to, at least not without medication. And yes - we SHOULD be able to exercise and get our HR up to the recommended rate but we get this HR without exercise and - in most cases - are exercise intolerant. For me any exercise that would get my HR up that high would make me pass out or have an autonomic seizure. For most of us it would at least cause us to be bedridden for a while. To give you those parameters is like telling a chicken to only poop in the litterbox!!!!

@Dystasysta When in hospital for the prep they have a bedside commode next to the bed and thanks to the IV fluids I am able to use that instead of a 😬 bedpan. I think you should be fine with a whole gang monitoring you, even with all the allergies you have. My BP also swings wildly when under stress, but I always have done pretty well with scopes. Wishing you an easy time with it and good results!!!!! Please let us know how it goes!!!!!

@Dystasysta - welcome back ! I am sorry you are having such a bad time. I too have GI issues related to dysautonomia, and had several colonoscopies. I suffer from autonomic seizures, and the prep for a colonoscopy always triggers them and a full flare to follow. Since I - thankfully - have had normal scopes my PCP orders colo-guard ( send-in specimens from home ) and I only do a scoping every other year. I used to have to be admitted to hospital for the prep so I could receive IV fluids during it. Now I get IV fluids at home, so I can do the prep at home, but even with the fluids I still have a flare afterwards, and have seizures during the procedure. I think colonoscopies are very important to ensure our heath and for early detection of problems like cancer etc, so a colonoscopy can be a lifesaver. I would definitely go through with it, especially at your age ( I am 54, so I too am at the age of higher risk of colon CA ), but i would discuss getting IV fluids during and after the prep to minimize POTS related complications.

@tigger2512 - if you have POTS your heart monitor may simply show sinus tachycardia, essentially a fast HR. In POTS the HR goes up when you stand, and stays up - on the monitor they cannot see WHY the HR goes up, so monitors often do not clarify a POTS diagnosis. Simply walking up a steep hill or getting excited can get your HR up like that. I had numerous monitors prior to my POTS diagnosis and they only showed tachycardia ( up to 160 BPM ) and PVC's - no one suspected POTS based on that alone. This sounds exactly like presyncope - almost fainting. I have neuro-cardiogenic syncope ( NCS ) in addition to POTS, it makes me feel like that prior to passing out. I had one of these episodes during my first TTT: my HR sped up and then suddenly plummeted and I fainted. The symptoms you describe happen before I faint and often fainting can be avoided by me lying down or squatting on the floor ( I too have extensively studied the bottom shelves and even the floor in Walmart ... ) For these symptoms they usually recommend the same treatment as for POTS: increase fluid and salt intake and wear compression hose. I would be surprised of no cardiologist had ever mentioned this to you. You may find drastic improvement from following these steps alone, and the beta blocker might hep as well. I was put on Metoprolol for the NCS diagnosis but in my case it was not enough, since I also have HPOTS.

@DizzyGirls - yes, the saline used to help me temporarily but with the LR the effects last a lot longer. I am always good for at least 3 days, unless I am in a flare. Sometimes I already made it a week between infusions!!!!!

I have a sister that also has POTS and often gets Tinnitus and then even looses her hearing temporarily. Her ENT told her that this is due to circulation changes within the ear. She gets IV fluids when that happens, and that fixes it for her. This apparently is not only happening with dysautonomia, though.

I have thought the same thing. Initially I think they named it postural orthostatic tachycardia syndrome b/c it appeared the most obvious symptom shared. Now it appears that we have similar symptoms with completely different mechanisms, as well as different severities. So approaching it as a spectrum rather than a syndrome seems to make sense.

hello @Sushi - I guess I used the wrong word. No - it does not make your blood "thicker" as in an anticoagulant makes it thinner. I meant that with the electrolyte solution in LR the fluid is forced to stay within the blood vessels - Saline gets pushed out of the vessels quicker. That is why I used the word thicker.

Hello @Knellie - I get Lactated Ringers Solution up to 3 times a week through a port at home. LR is an electrolyte solution that does more than just fluid replacement like Saline solution. Saline will give you a temporary boost that keeps the vessels full to keep them tight, prevent them from dilating too much. LR does more than that, it actually stays in the vessels longer b/c it essentially makes your blood "thicker". As a comparison it is a difference between tea and milk. Prior to the port I used to be in the ER every 6-8 weeks for syncope, seizures, high HR and high BP from POTS. They would admit me for 24 hours of IV Saline. I would crawl in, unable to stand or have a straight thought, and leave skipping an hopping. You can actually SEE the effectiveness of fluids while they are running in: Vital signs normalize and my skin color returns to pink, I can talk and think, i can start being upright and walk again. But the results were always a temporary fix. Eventually, when a hopitalist refused to give me fluids b/c he did not believe in POTS and said if I can drink I don;t need them ( which led to 3 unnecessary seizures ) my PCP finally agreed to the port. I have never looked back. I had my port for 2 1/2 years and am much, much more stable!!!! My autonomic specialist ( who is against ports and permanent fluids for the treatment of POTS, but uses it for temporary symptoms relief ) used to give me an order for 2 liters of Saline weekly for 1 month during flares. I would go to an outpatient infusion center for those, some Urgent care centers can do it too. My 2 sisters, who also have POTS, get Fluids as needed and it helps them from becoming bed ridden. Strangely in us ( we have HPOTS ) IV fluids bring our BP DOWN, when normally IV fluids INCREASE BP. My outpatient order used to read: " 1 liter NSS IV over 2 hours as needed weekly for 4 weeks for POTS flare, may be repeated x 1 more liter if needed". The good thing about Outpatient infusions is that they are given through peripheral IV access, which is a lot safer than a port. Infusion ports carry a high risk for blood clots and infection leading to life-threatening sepsis, which is why most docs are hesitant to order them. For me the benefits definitely outweigh the risks. My quality of life has immensely improved since I get them! But for many people Outpatient IV therapy on an as needed basis is equally effective. Peripheral IV sticks, such a for lab work etc, can be performed in any outpatient clinic that offers those services. IV ports need to be accessed by an RN, since they require a sterile environment and technique. The needle needs to be changed once a week, so I get a home care nurse do that for me. Administering the fluids while the needle is inserted can be done by me.

As promised earlier in this thread I want to give an update on the effects of the Plaquenil: it works as expected! The joint pain only affects me during sudden weather changes and I have so much more high-energy days! I have been able to be more active, and the increased exercise in turn seems to help the POTS symptoms. I don;t have fatigue as often, and my bad periods are shorter. Although no cure I am definitely grateful for taking this med, and will continue to do so!!! Fatigue was almost one of the symptoms I minded the most and now it is tolerable!!!! My opinion on Plaquenil : 👍

@erinlia - I am not sure, check on their website!