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A cardiologist often refers you to an electro-physiologist if an arrhythmia requiring intervention is suspected. You can by a Kardia device on Amazon, you just need a phone.

I have HPOTS and many drugs commonly ordered for POTS make my symptoms worse. However - I took Midodrine ( which did not help for my symptoms at all ) but had no negative side effects from it. It does cause a strange tingly feeling on the scalp but no otherwise unpleasant side effects. It is very short-acting, therefore it is safe to take even if you don;t benefit from it. I would not hesitate to give it a try!

@MTRJ75 - I have HPOTS, so both my HR and BP are high ( when untreated ). I take high doses of Carvelidol and Diltiazem - they control it pretty well. I also get IV fluids every week, they also keep my BP and HR down. Without the IV fluids I run a high BP even WITH the meds. I have been on a stating for several years for high cholesterol. Once the levels came down I stopped it and tried to keep the cholesterol down with diet and exercise ( well - as much as I could ) but it went right back up. Now I am back on the Rosuvastatin.

@Ashc - when I have to spend a few days on bed I usually just bingewatch netflix or HBO and knit!!!

@erinlia - according to Dr Blair Grubb and Others ( as talked about on the Dysautonomia International Dysautonomia Conference 2020 ) recent studies have found a STRONG link between Dysautonomia ( namely POTS ) and AUTO-INFLAMMATION. This is different from autoimmune - it does not have AI positive blood tests but shares many symptoms with AI. It does not involve the immune system that deals with antibodies but rather the innate immune system, such as T-cells etc. Many POTS patients also suffer from AI-ike symptoms but have negative lab work-up. I have experienced generalized unexplained joint pains, at times severe, since onset of POTS. Over the years I had MANY blood tests for AI, and saw a rheumatologist twice - nothing ever showed up except for an elevated ESR ( a sign of inflammation ). My xrays never showed anything but an arthroscopy of my knee showed increased synovial fluid - another sign of inflammation. My autonomic specialist put me on Plaquenil back in January, stating that it should help my joint pains and possibly help my POTS symptoms as well. And - Tada!!! - it did! My joints hurt only briefly when the weather changes, and I have TONS more energy! This energy also helps me to exercise, which in turn helps the joints. My BP has lowered to where I was able to decrease some of my meds, including the beta blocker. I have still OI and occasional pre-syncope, so it does not help for ALL symptoms - but it helped for many!

@KiminOrlando, @MTRJ75 - the reason we cannot earn money or work while on SSDI is because we ARE unable to. And the reason why we have to requalify every so many years is to determine if we now have improved to the point that we can work again. Many people - with many illnesses - DO get better and can get off SSDI/SSI.

Florinef will only help CERTAIN POTS patients. It usually does not help for HPOTS, since the mechanism behind this type causes excessive vasoconstriction.

Yes - sitting for me is almost as bad as standing a long time. I have fainted while sitting many times! I second what @cmep37 has said: sitting can cause blood pooling as well. Also - when I get symptomatic from being upright too long just sitting does not stop the symptoms, I have to actually lie down or else squat down in order to redirect blood flow. Whenever I have to sit a long time I try to elevate my legs on another chair.

@Sarah Tee - sounds like you hit the jackpot! NOTHING beats a good PCP who's in your corner!!!!!

@MTRJ75 - thanks for explaining it. I am on SSDI - I had worked for all of my life full time when I became ill. My payments were calculated according to my accrued SSI payments off my wages over the years and assets are not an issue. But I am not allowed to earn more than a certain amount a year or loose the benefits ( which I am unable to work at all anyway ). I was not aware that you get SSI if you do not qualify for SSDI!

@MTRJ75 - I am sorry if I am asking a stupid question but: what are work credits towards SSDI? Isn't the whole point that you CANNOT work?

@MTRJ75 - I agree with @KiminOrlando. A calendar is very important! I was reviewed as well and had to call around to find out the dates of appointments and hospitalizations.n my case they sent me a form to fill out that sked about appointments, symptoms etc. It states that they may decide to involve my doctors in the re-approval process, however after receiving my returned form they said it was not necessary to involve my docs and I got re-approved. I was approved for SSDI in 2016 and have only been re-evaluated once so far.

@CallieAndToby22 - sorry, I have no words of wisdom. I took guanfacine 0.5 mg twice a day for several years, without any side effects. I ended up having to stop it b/c my BP ended up too low. I had no insomnia from it, but we are all so different. As to a different vasodilator - I take Diltiazem, that has been very effective for me, and also has helped to stop my seizures.

Hi @Knellie - yes, GI symptoms as you get with Dyspepsia are common in Dysautonomia. The ANS is responsible for digestion ( the parasympathetic strand ) and there can be several scenarios from an imbalance: GERD ( indigestion etc ), IBS and gastroparesis being the most common ones talked about on this forum. Dyspepsia is simply another word for indigestion, non-ulcer ( obviously ) meaning without any ulcers being the cause of the symptoms. So - you might have the exact symptoms an ulcer would cause but without the ulcer. I had years of severe GI troubles in the beginning of my illness, an EGD showed GERD , esophagitis and a duodenal ulcer - all caused by the excessive acid produced by the ANS "on fire". This was when my POTS was untreated and at it's worst. What eventually helped me were Pantoprazole ( similar med to Omeprazole ), Carafate ( coats the stomach ) and a concoction called GI cocktail ( Mylanta, viscous Lidocaine and Phenobarbital ). Once the inflammation healed I was able to keep it from getting worse again by following a few simple steps: avoiding large meals and only eating 6-7 "snacks" a day, avoiding raw fruits and vegetables that are acidic ( steamed is fine ), avoiding alcohol and caffeine. For some reason water gives me horrible indigestion but I tolerate ginger ale - so that is what I mostly drink. Your doctor is right: the symptoms you are experiencing are commonly found in dysautonomia patients, and the increase in medication as well as adjusting your diet and eating habits can greatly improve your symptoms.

@erinlia - before I got my port my specialist ordered 1-2 liters on Normal Saline weekly for 1 month when in a flare. That often was enough to hold me above water. But I also was admitted to hospital for IV fluids when Outpatient fluids were not enough. My 2 sisters in Germany, who also have POTS, get IV fluids when in a flare, and it helps always. Now, with the port, I am doing great with 1 liter of Lactated Ringer solution ( extra electrolytes in addition to the saline ) weekly and more as needed: I usually get a bag every Monday and Friday, more if in a flare. I have not been in hospital but once! I have been taking a very low dose - 5 mg - for many years. It really helps me focus and gives me energy, but I don;t take it in the afternoon b/c it makes me too jittery in the evening. Here is an article by Dr Grubb about using Ritalin for POTS: Use of methylphenidate in the treatment of patients suffering from refractory postural tachycardia syndrome - PubMed (nih.gov)

@Sarah Tee - I did understand that when I responded to your question. However - I have found that a cardiologist that does not understand POTS probably will only recommend the following: beta blocker, salt and fluid increase and compression. That is all that is officially recommended for your symptoms, unfortunately. As soon as these treatments prove to be ineffective they throw up their hands in defeat. I say "they" as in "all of them" because I mean uninformed docs. That is why it is so important to see docs that are educated and experienced in dysautonomia. Most likely finding a cardiologist that knows how to treat your symptoms will take about as long to see as your specialist appointment. Having said that - the decision to see a cardiologist is entirely up to you. You might be lucky and find one that is willing to go beyond! In addition to my autonomic specialist ( who is a cardiologist but is in another state ) I also have a local cardiologist, and he is awesome. I was his first POTS patient but he has been open to learning about POTS. When I am in a flare or have unexpected symptoms that need adjustment of my meds he helps out, always. I am so happy to have him since he calls me at home when I need him and I can see him short notice when it would take a month or so to get in with my specialist ( and an 8 hour drive!!!! ). I understand how desperate you are to find a way to get back to "normal". The clinic you mention that treats dizziness and fainting may or may not be able to diagnose and treat POTS. Often they only look for VVS or arrhythmia related syncope. Have you had a TTT before? Having the results of a TTT would definitely be valuable for the specialist to have, so it might be helpful to get referred to them for a TTT. Either way - in order to get over the next 3 months without deteriorating further it is important that you continue to stay active. Many of us end up bedridden for a while and if it gets to that point exercises that can be done in bed are very important, especially the ones that use abs and strengthen leg muscles. Orthostatic exercises also are very important: getting out of bed every hour, and this exercise: stand leaning against a wall, both legs a foot apart. With you back firmly against the wall slide down until you sit on your heels, hold this position for a few secs and slide back up. Repeat this a few times, several times a day. This helps to prevent becoming bedridden completely, so it's best to do this while you still are able to be upright!!!!!!! I hope you will find a knowledgeable doctor, and that you will be able to stay upright while waiting for the appointment!!! Please let us know how things go and if you see a cardiologist. Hang in there!!!!!!

Thanks for sharing, @CallieAndToby22 - really nice pictures!

@KiminOrlando - boy, am I glad you found something that helps! You've had a rough time at it for so long! Thankfully now you have a diagnosis - and meds that seem to help. So happy to hear it!

Yes @lattegirl - this used to happen to me frequently, usually followed by syncope. When I was still working I had no choice to keep going when I hit my limit and often became presyncopal or fainted, this was often described by bystanders that I stopped doing whatever I was doing, had a blank stare and blue lips as well as a white triangle around my mouth - in 90% of the cases I would either pass out or have an autonomic seizure. This happened tons of time at work, so there were always witnesses. After and during an episode I always have slurred speech and talk jibberish - this is due to no circulation to the brain. Since this happened during a workout I would say you probably are doing more than you should - I would hold off on the gym and stick to light exercises!!!!

@erinlia - I experience many of your symptoms. I was diagnosed with HPOTS in 2012, after 3 years of suffering all of the symptoms of POTS including syncope and autonomic seizures ( caused by loss of circulation to the brain by sudden and severe constriction of vessels ). I also have Reynaud's and Prinzmetal angina - all caused by spasms of the blood vessels. I also have NCS, which causes syncope from excessive DILATION of vessels. In my case it depends on which way the sympathetic NS reacts - if withdrawal then my vessels relax and I have tachycardia and low BP and pass out or if excessive sympathetic overcompensation the vessels spasm and I have tachycardia and high BP until I eventually go into a seizure. Obviously this scenario is quite difficult to treat, since I have BOTH high and low BP, BOTH vasoconstriction and vasodilation. What has been successful for me is a betablocker with both beta- and alpha-blocking properties ( Carvelidol ) for HR and BP control, a calcium channel blocker that provides vasodilation ( Diltiazem ) and IV fluids ( I have a port and get home infusions ). Since I "swing both ways" in the way of blood vessels constriction the fluids help keep the overall tone of the vessels steady by preventing them from constricting or dilating too much, both by providing a steady pressure inside and by giving a volume boost. I was always unable to get the same effect from drinking alone, and since the IV fluids ( 3 years ago ) I have been so much better! They also have helped me with fatigue and sleep. I take a very low dose of Ritalin in the am, and that gives me enough of an energy boost that I can complete a few tasks before 11 am. I too cannot use compression hose due to the Reynauds. That is a shame b/c I think they would help. Since you have Reynauds meds that cause vasoconstriction, like Fludrocortisone and Midodrine, may not be right for you. I could not tolerate any meds that cause constriction but - as I already said - do well with vasodilators. Having said all of that - I still have to do all of the preventative measures you take now, but I feel better and no longer pass out or have seizures. I hope they will find the right meds for you. Have you been back to see Dr Grubb?

I agree with what everyone else has been saying: a cardiologist not trained or educated in POTS care may make things worse simply by dismissing your symptoms ( due to blissful ignorance ). I myself saw 5 cardiologists with different levels of (mis)understanding of POTS - the best one said if I had POTS he wouldn't know how to help me, the worst one called me hysterical ( I have HPOTS and apparently he could not make heads or tails out of my TTT ). So - no, a cardiologist may know less about dysautonomia than a good PCP ( that was and is the case with my own PCP ).

@Goldfish - it can be caused by POTS but it also can be caused by underlying inflammation or viral infections. Many people have ongoing problems after certain viral infections such as Mono, Flu etc. These days of course there is the possibility of a previous COVID infection. Sometimes viral complications can be seen in blood work and sometimes they cannot. Low-grade fevers such as you describe can have immune causes. The fact that you get sick often is also indicative that there is an immune problem, not necessarily auto-immune in nature. It may be a good idea to see an immunologist or rheumatologist, they are most knowledgeable in this area. There is also a chance that you may suffer from allergies - have you ever been checked for them? If your body is constantly fighting allergens it can cause ALL of the symptoms you experience.

Hello @Goldfish - welcome to this forum!!! I am so sorry to hear about your problems, and at such a young age! But be assured that MANY young people with POTS have a almost complete recovery and enjoy a healthy life. --- The fact that your HR jumps up and then goes back down is not indicative of POTS, but all your other symptoms are. Normally a Tilt Table Test is used to diagnose POTS, which is done by a cardiologist. The recommendations your PCP gave you are appropriate, and I hope you follow them. Do you see ANY improvement with them? If they do not help you enough you might want to see a cardiologist for further investigation. As to career path - I know this stressful time of decision making all too well, since my daughter is also 16. Be assured - there is no reason not to pursue what you want at this time! There are many more treatment options available, so just hang on! If necessary you can take a year off between school and college ( or whatever career you want to pursue ). I know several young ladies with POTS that either are at college now or have recently graduated, with all different types of degrees. Even areas that require physical involvement, such as Nurses and Physical Therapists! I think it is best to approach your future as you would without POTS, since there is a greater chance for you to improve ( especially since you have not yet been evaluated or treated by a specialist ) than there is for you to stay symptomatic. As I said: there are many POTS sufferers that completed schooling of their choice even WITH POTS! This question is best answered by a specialist. There is a list of physicians knowledgeable in POTS on this website ( under the physician tab ), and increasingly pediatric cardiologists are becoming aware of POTS. It may be a good idea to make an appointment with a pediatric cardiologist at a major hospital center near you. Don't worry - many teens are able to recover with proper treatment!

Caffeine is a stimulant and commonly causes palpitations in many people.

I took Prednisone ( 60 mg to 10 mg over 6 days ) twice for joint pains. My autonomic specialist always told me that I could not take it b/c of my POTS, and he was right 😒. I did OK while I was on it but stopping it caused one of the most horrible flares, with high BP etc. The second time we weaned slower - instead of stopping at 10 mg I took 1 mg less every day. I still had the same flare - so I was told not to take steroids at all unless it's an emergency.