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Everything posted by Pistol

  1. Dear @merkat30 - I question the accuracy of the BP equipment that took the reading you posted. I do not think that you would be capable of actually having a diastolic BP that high. No doubt you were hypertensive but these digital BP readers are notorious for taking inaccurate readings when your BP is either too high or too low. I found that to be very much the case for me, I only use a manual cuff since several digital ones were consistently incorrect when I rechecked readings manually. If possible I would get a different, more accurate machine, or get a manual one. Most Retail pharmacies can teach you how to use one correctly. I too have both high and low BPs and could not at all tolerate Clonidine, but we are all different. Be careful!!!
  2. @sfthriller - HPOTS is short for hyperadrenergic POTS, excessive sympathetic activity causing high adrenaline levels. You would not be able to see vasospasms in a scan, my coronary spasms were found during a heart cath and the spasms in my brain that cause seizures were caught when I passed out during an EEG. I had my first port put in 2 years ago and my symptoms and high BP have GREATLY improved. A port usually lasts 5 years but I just had my third one b/c the first one was put in crooked and had to be replaced and the second one ended up getting pinched off, so I had a third one placed this month. Thsi is highly unusual, though, most ports are good for a long time. The needle and dressing get changed once a week by a nurse that comes to my house ( I am homebound ). Most docs do not want to consider a port b/c there ARE risks associated. But I am a very strange case and am medication refractory as well as I kept passing out and taking seizures and all of the falls caused a risk for injuries ( which I had a lot ). Since the infusions I rarely have those episodes anymore. Before the port I would go to an outpatient clinic to get weekly infusions, some clinics or urgent care centers or infusion centers do them on a outpatient basis. They stick a needle in your arm and remove it when you leave - that may be a better idea if you consider trying infusions. Regarding infection: no, I have never had any infection from my port, neither have I had a blood clot. And I really put my port to use!
  3. @sfthriller - a couple of things you mentioned in your post made me suspect your problems with headaches could be from excessive vasoconstriction. You mention cold feet, tachycardia, headaches worse with standing and improvement of headaches and POTS symptoms from IV fluids. This sounds like vasospasms to me. --- I have Reynauds syndrome in my feet as well ( constantly cold feet ), have HPOTS ( caused by blood vessel constriction due to sympathetic overcompensation ) and have Prinzmetal angina - chest pain caused by sudden and severe vasospasms of the coronary arteries. I also have high BP from the HPOTS. The reason I find this relating to you is that many people with HPOTS also suffer from migraines, and these often are due to vasospasms as well. In my case it is coronary arteries that spasm - in your case it COULD be the vessels in the brain? In my case when my brain vessels constrict they do so very suddenly and severely and I have seizures from this. It could be that you suffer from just constantly constricted vessels, like you do with your feet. What has helped me a lot with the excessive constriction is calcium channel blockers, as they work by dilating the vessels. And i have a port and get IV fluids several times a week at home. The fact that you respond so good to IV fluids also points in the direction of excessive vasoconstriction. The IV's not only provide volume but they also create a steady pressure in the vascular system, therefore counteracting the ANS's urge to constrict. It is essentially like running water full force through a pinched hose - this can "unpinch" the hose. Have you ever tried calcium channel blockers? Also - what helped me was nitro glycerin patch, it also relaxes blood vessels but i had to stop it b/c it dropped my BP too low.
  4. Hello @Ed123 - welcome to the forum, and good job taking care of your POTS symptoms with the above mentioned treatments!!!! -- Yes, you CAN loose a lot of electrolytes when you sweat excessively, and sodium is only one of them. That is why it is important to replenish your electrolytes when you sweat - such as with sports drinks etc. You can see your doctor and he/she an easily check your electrolytes with a metabolic panel -a lab test that measures them. But if you are uncomfortable seeing your doctor you may be able to just call and ask to have them checked instead of going to the office. Often by replenishing them with mineral rich foods and liquids you can correct any imbalance, such as bananas, nuts, eggs, veggie broth, whole grains etc. But it is always a good idea to check with your PCP, even if by phone. Be well!!!!!
  5. My husband takes Verapamil, which is different than a beta blocker. If the high HR still happens despite the beta blocker I would have him return to a cardiologist to maybe try another type of medication
  6. Dear @merkat30 - I have HPOTS as well as NCS, and I suffer from BOTH high and low BP's. Does your BP increase when standing? That usually happens with HPOTS. With me it depends on which part of the ANS is dominant - sympathetic = high BP, parasympathetic = low BP. I am on high doses of beta blocker and calcium channel blocker to combat high BP but cannot tolerate decreasing it when BP is low. When you say your docs want to try a high BP tablet - do you mean a tablet to make your BP lower or a tablet to make it higher??? Is your BP low when you have HyperPOTS symptoms?
  7. Dear @merkat30 - I have HPOTS and do not have flushing when standing, but I know it is a common symptom of MCAD.
  8. Hello @Lamby -i too have POTS and ADHD as well as histamine intolerance that triggers my POTS symptoms. I personally have found low-dose Ritalin in the morning very helpful and have not noticed an increase in allergic reactions from the super low dose. When I DO get seasonal allergies or insect bites ( which both trigger POTS for me ) I take Loratadine in the morning and low dose Ativan ( 0.5 mg ) at night ( rarely ). Melatonin has not done anything for me in the past. The Lorazepam does help a lot to calm me down when my adrenaline levels are through the roof and I do not have any adverse effects from it ( other than feeling tired the next day after taking it ). I also suffer from muscle spasms a lot from the excess adrenaline so a half tablet of Flexeril ( a muscle relaxer ) helps me go to sleep when I am very tense ( but I do not take them together ) and I do not medicate every night.
  9. @Jessica_ - I have flown to Europe twice since having POTS. I find that as long as I get IV fluids right before, have wheelchair assistance during transit onto the plane and drink plenty of water during the flight, wear compression hose ( which I usually cannot use due to Raynauds disease but need for long flights ) and get up every hour or so I do fine. I even have been able to tolerate the jet lag!!!
  10. Yep, it is. that's why we don't want to do it. Accepting something makes us feel like it is the end of something, like giving up. But it really is NOT - it also means freedom. Freedom of being a victim. When we accept something we simply cannot change then we can start to live with it. It doesn't make it right or fair or better - just easier. Be well, @Nin!
  11. @p8d, @Lisa C - thank you!!! I appreciate your kind words - and i WILL be better soon!!! Best wishes! 😉
  12. Here's the thing: no one can really understand WHY we become so "useless" from one minute to the other. Not even WE understand it, neither do our families or doctors. Example: I am doing good, had spent the last 2 weeks reconditioning and slowly coming back to my "normal" after a bad flare, thankful for every little thing I am able to accomplish without having to go back to that dreaded bed. So, in the evening I feel it's safe to stay up just a half hour longer to play a game with friends. The next morning all is well - until there is a thing with the computer that works me up so much that my blood boils ... and that's that. Adrenaline through the roof, heart pumping lead, thoughts and words a jumbled mess. I am so hyper I tremble and feel as if I am going to either faint or explode. So - back to bed it is, everyone else in the house is left to fend for themselves. There goes church on sunday, there goes my doctor's appointment on Monday, there goes the phone call with a friend I had planned for the weekend ... This Frailty STINKS ( sorry, just venting here ). My husband asked: " You just had a bag of IV fluids yersterday and should be feeling great today - what set you off?" ... hmmm, playing a game? Staying up just 30 minutes longer than usual? Getting frustrated over a piece of uncooperative electronic equipment? Did I feel "safe and recovered" from my flare too soon? Was it denial or wishful thinking? Was it MY FAULT? The answer is: it was POTS. It is what it is. Stuff happens. No pill, no amount of rest, no bag of fluids or bottle of water is ever going to give me stability. The monster is always lurking, ready to wake up and swallow me. --- This may sound depressing or frightning or too negative, but actually - it's good. It is good and healthy to be aware of what is real, what can happen and to not be surprised WHEN it happens, to get used to the idea that there is a sleeping monster in the room. So what if it wakes up and swallows me? I KNOW that it will spit me back out, all yucky and covered in spit that will need a while to clean off. But then it will go back to sleep and I will go on with my life. It is what it is.
  13. Hello @Lisoosh - welcome to the forum and thank you for trying to help your Dad!!! -- I am really not sure if high altitude can cause POTS. My husband climbed Mt Kilimandjaro ( spell? ) once and witnessed several friends developing high altitude sickness but none of them had long term effects. I think it could be possible since it is severe and stressful events that can cause POTS ( such as viral illness, trauma or pregnancy, for example ). I think JUST having a high heart rate does not necessarily mean dysautonomia. In POTS the HR typically increases more than 30 BPM, or above 120, within 10 minutes of standing, and causes orthostatic intolerance ( meaning symptom of dizziness, brain fog, tremors, anxiety etc ) happen when we stand up, and typically resolve when we lie down. So determining WHEN your Dad's HR goes up is important. It could be an arrhythmia, like SVT for example, or Sinus tachycardia. Also - POTS patients often experience skipped beats along with the high HR. My husband, who does not have POTS and is generally healthy, develops scary bouts of racing heart and chest pain at times, especially when he exerts himself. They could never find what it was but he takes an antiarrhythmic drug and it never happens again. Maybe the betablocker is enough to stop the bouts for your Dad? The following articles might help: You can find more under the Information tab on the home page of this web site. Best of luck!!!!!!
  14. @Lisa C - unfortunately this is normal for dysautonomia. Our ANS is very susceptible to any change and gets triggered to over react by he slightest thing - too much or too little exercise, what we eat ( or what we don't ), heat, cold, barometric pressure changes ( a big one for me ), allergies ( also a big one for me ) ... and your daily routine. I have found that when i found myself feeling bad at certain times of the day I would change my routine. For example: I always feel better in the mornings and get worse as the day goes on. Fighting this only makes things worse, so I changed my routine and -- Voila, I can make it through a day without major set backs. I go to bed really early ( 7 pm ) and wake up early ( 5 am ). The morning hours are my best, so I cherish them with a cup of coffe and doing internet chores. then I do my household chores ( one project a day ) and start to prepare dinner ( by cutting up things, defrosting things mixing things etc ) All thoughout I take 5-10 minute rests. Around 10 am i am done, go to bed to watch a movei etc. After lunch I make phone calls etc, Afternoon is time-out: every one in the house knows that i am out of commission. Nothing happens except for what's left to prepare dinner. Then bed. Most of the time I don;t have energy to even shower in the evenings, so that is another "chore" for my energetic mornings. ( BTW - my morning burst of energy comes from the Ritalin i take upon waking ). If you find certain times of the day you get worse it may be that you are doing too much. If you feel better after putting on hose and drinking a lot and then crash a while later you maybe did too much while feeling good? For me realizing that "feeling better" does not equal "do more" has truly improved my quality of life. I had to learn that i can no longer do what i want when I want it - but I have to let my body dictate what happens when. The sooner I realized that the better things went. It sounds pityful but really is the only way I can peacefully live despite POTS.
  15. @Cara - look at our physicians list here https://www.dinet.org/physicians/ and see if you can find someone close to you. also - it is very important to have a PCP that will help you with your health care, he or she can do orthostatic Vital signs ( or poor mans tilt ) in the office with a regular BP cuff nd by counting your HR. This is better than doing it yourself b/c the results will go in your medical record.
  16. Does your HR increase when you stand or is it just your BP dropping? For low BP commonly doctors prescribe Fludrocortisone or Midodrin. These agents work to bring low BP up. If your HR is affected they often order a beta blocker. For many people the salt/fluid/compression alone is enough IF DONE EFFECTIVELY. If you suffer from low BP despite these measures I would ask your doctor about trying medication.
  17. @KiminOrlando - I looked it up on the FDA website. It is NOT a antihistamine but rather it is similar to an antidepressant that inhibits norepinephrine reuptake. It is known to be an antihypertensive, therefore dropping your BP. Apparently if you take a low dose it can be given with Guanethidine to stop it from dropping the BP. Here are quotes: The current hypothesis is that the clinical effects are due, at least in part, to influences on the adrenergic activity at the synapses so that deactivation of norepinephrine by reuptake into the nerve terminals is prevented. Animal studies suggest that Doxepin hydrochloride does not appreciably antagonize the antihypertensive action of guanethidine. In animal studies anticholinergic, antiserotonin and antihistamine effects on smooth muscle have been demonstrated. At clinical dosages up to 150 mg per day, Doxepin can be given to man concomitantly with guanethidine and related compounds without blocking the antihypertensive effect. At dosages above 150 mg per day blocking of the antihypertensive effect of these compounds has been reported. https://www.drugs.com/pro/doxepin.html Depending on how low your BP is dropping it may be not a bad idea for you? If you take any other drugs for hypertension maybe they can be adjusted to accomodate the Doxepin?
  18. Hello @Cara - if orthostatic Vital signs confirm diagnosis of orthostatic hypotension or neuro-cardiogenic syncope ( same symptoms but actual syncope when the BP drops ) many physicians do not see the need for a TTT. However - if there is any question about a diagnosis or they want to determine of it is another dysautonomia, like POTS, physicians may order a TTT. Usually a cardiologist or electro-physiologist perform them. Depending on your insurance you may or may not need a referral from a PCP. And I agree with you PCP from a few years ago: increase in fluid and salt intake as well as compression hose and exercise are recommended for most dysautonomia cases - especially for symptoms such a yours.
  19. My sister ( who also has POTS ) has a condition called heterophoria, which means ONE eye points up, down, right or left instead of straight ahead. In other words: cross-eyed in one eye. Her brain does not process the information from her eye correctly and she constantly strains to see, cannot see patterns or many colors without getting overstimulated etc. She had this all of her life but just recently was diagnosed with it. She also cannot drive at night b/c of the lights. https://medical-dictionary.thefreedictionary.com/heterophoria
  20. @yogini - I am happy to hear that you made it through COVID without a flare!!!! I never felt POTS puts us at an increased risk for COVID related complications but I did expect a flare. Good News!!!!!
  21. Have you tried to call the pharmaceutical company that makes it? They should be able to tell you where to get it since they sell it to the sellers. You also may be able to get it through a Canadian Mail pharmacy. Also - have you tried Costco? They can mail it you if you do not have one nearby.
  22. My Father-in-Law took it for general cardiac health after a heart attack. He also has Hypertension. He did not have to reduce his BP meds after taking it for a long time, so at least in his case the BP reducing effects were minimal.
  23. @WBuffett - I have been on Lexapro for years with good effects on my POTS, no side effects. Earlier this year we added Wellbutrin ( SNRI ) and I did very good with it until I had an allergic reaction and had to stop. Personally I never shied away from taking meds for POTS b/c of listed side effects. Had I been too afraid I would not be better today. Of course I had some bad experiences but none of them were serious. My specialist recommends SSRI's and SNRI's for all of his POTS patients. I have found them to help with energy and fighting fatigue.
  24. @Pietro - yes, unfortunately mostly of us have been in your boat. Your symptoms do sound very much like dysautonomia. What I did is read up ( which you have already done ), print it out, bring it to your PCP and ask for a TTT ( typically the first step in diagnosis ). Many cardiologists do this, but they may not have the expertise to trat POTS. If your diagnosis is POTS I would ask for a referral to a specialist ( see our list here ) https://www.dinet.org/physicians/ You can find more info here https://www.dinet.org/info/pots/ Also - the book "Teh Dysautonomia Project" is very helpful, it is written BY physcians abd patients FOR physicians and patients, you can find it on Amazon. In the mean time increasing water and salt intake, wearing compression hose ( 30 - 40 mm pressure recommended ), exercises to tolerance and avoiding prolonged standing can help. Good Luck!!!!
  25. Dear @September - I was in exactly your shoes when I first became ill. I too had had syncope when I was a teenager. When I became severely symptomatic with POTS 10 years ago No one knew what was wrong with me. Since I was a nurse I went online and fairly quickly I realized I had POTS. My PCP sent me for a TTT which showed neuro-cardiogenic syncope ( also a dysautonomia ). After seeing many more ( useless ) physicians I asked my PCP to refer me to an autonomic specialist and all is history after that ... What you describe sounds like dysautonomia to me. You mention low BP - does your HR increase at all upon standing? If so you may have POTS. If not - you may have neuro-cardiogenic syncope ( NCS ). With NCS you do not have to completely loose consciousness, what you describe is still considered syncope. The low BP probably causes constant fatigue, frequent nausea, forgetfulness and trouble focusing ( as you describe ). These symptoms typically stem from excess adrenaline - could be a compensation effort by your ANS to counteract the low BP by releasing too much adrenaline into your system in order to raise the BP. I have Hyperadrenergic POTS and this happens to me, I also get ice cold hands and feet when this happens. There is a definite POSSIBILITY that you have POTS, and your doctor should refer you for a TTT, that confirms the diagnosis in most cases. Once you have a diagnosis usually a cardiologist ( especially EP ) might treat you - but they commonly are very underinformed about how to treat it. Therefore most of us seek help of autonomic specialists, a list here https://www.dinet.org/physicians/ PersonallyIi brought articles about POTS, highlighted all of my symptoms and showed them to my PCP. That's when he ordered a TTT. Here is moe information on POTS that may be helpful to you: I would print out articles and highlight your symptoms and then bring them to your physician. If you do not have tachycardia upon standing you most likely have NCS rather than POTS - which is still dysautonomia. Both POTS and NCS are treated with increase in salt and water intake ( a lot!!!!! ), and wearing compression hose, 30-40 mm pressure recommended. Especially in your case these measures could improve your symptoms significantly. Also daily exercise and avoiding standing still helps. So - read up, bring articles and a list of symptoms to your PCP, take your BP and HR lying, sitting and standing ( each after 1 minute and standing also after 3 and 5 minutes ) and bring the results to your doc. Ask for orthostatic Vital signs to be taken in your docs office ( make sure they wait 1 minute after sitting up and standing up - do not let them take them right after changing positions, the body need 1 minute to adjust to position changes - therefore the abnormal response is only proven after 1 minute ). Also - the book "The Dysautonomia Project" is extremely helpful, you can get it at amazon. It is written for both patients and physicians and has a wealth of information for both of us. I hope this helps!!!! Good Luck!!!!!
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