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  1. Today
  2. I am also sleeping in the right side and sleeping at this side solves a lot of problems. I was also facing this similar issue, i couldn't sleep well, well doc advised me to change my mattress, After using memory mattress I relief from this issue. I am really very happy to use it because now I sleep well. I recommend you to once check there, I hope you will also sleep well after change your mattress.
  3. No I dont have, but all above are so good.
  4. I had a eeg done and these siezures are non epileptic. When I said to the epilepsy nurse maybe it's my heart she just give me a look of don't be silly. It was only after pots syndrome was brought up from go etc. I think most doctors even cardiologist know enough about the effects of pots syndrome. It sounds like siezures are rare with pots but definitely does happen to some people I suppose.
  5. I have yet to be diagnosed as waiting for tilt table test. My GP said my symptoms sounds like lots, also a cardiologist and neurologist. But here in UK long waiting times to have these test! I get these if I'm on my feet too long, I can't even speak properly when this happens, my speech is slurred it's so scary. I just couldn't find this as a common problem with pots online. The stairs are my worse enemy, if I climb too many stairs a siezure will come.
  6. So sorry your symptoms are not under better control right now. What does your doctor say? Do IV fluids help stabilize your symptoms?
  7. Yesterday
  8. Erectile Dysfunction: Cure and Prevention


    What is Erectile Dysfunction (ED)?

    ED, or Erectile Dysfunction, is when a man finds it hard to get or keep an erection that's firm enough for sex. It affects about one (1) out of two (2) men over the age of 50. In some, ED only happens from time to time. In others, it's a more severe problem.


    While ED is more common as men age, growing old is not the cause of the problem. ED can signal underlying health and emotional issue. Finding and treating the reason (s) of your ED can improve your overall health and your sex life.

    ED happens when blood doesn't flow well to the penis, or when the nerves in the penis are harmed. ED can be from an injury, surgery, heart disease, peripheral arterial disease, or high blood pressure.

    It can be due to high blood sugar, alcohol, and drugs or smoking. Some medicines may also cause ED. Emotional stress (depression, anxiety, or relationship problems) can lead to or worsen ED.


    Taking active steps to prevent ED may help your sexual function and improve your general health.

    The best things you can do are:

    • Exercise regularly
    • Keep or get to a healthy weight
    • Avoid smoking or vaping
    • Limit drinking alcohol (two drinks or less per day)
    • Avoid using illegal drugs
    • Adjust your medicines if needed (never make changes without first talking to your doctor)
    • Adopt better sleep habits (7-8 hours per night is ideal)
    • Take care of other health problems like high blood sugar and heart, artery or kidney disease (work with your doctor to regain health)

    If you do have ED, talk to your healthcare provider to learn why it's happening and how to find the best treatment.


    Your healthcare provider will want to learn about your physical and emotional health before choosing treatment. You may be asked to change your lifestyle habits or the medicines you use.

    For example, you may be asked to lose weight or exercise more. You may be asked to stop smoking, vaping, or using drugs or alcohol. You may be offered a different type or dose of medicine you are already taking. Never make changes to medication without first talking to your provider.

    At the same time, your provider will want you to address any emotional problems. These could stem from relationships, work, stress, depression, or anxiety from past issues with ED (performance anxiety). Your healthcare provider may refer you to a counselor if there is a more serious mental health concern.

    For many men, ED can be prevented or treated safely. Treatments range from sex therapy to things like vacuum devices, oral or injectable drugs, hormone therapy, and surgery. Most treatments work very well.

    If you have ED, there is help. Talk with your healthcare provider about options to prevent or treat ED.


    Let us take a look at any one of these medicines and how they can be of use to you in male sexual dysfunction treatment:

    1. Kamagra Tablets: This Medication is available in many strengths and forms like Kamagra 50 mg, Kamagra 100 mg, Polo Chewable, Super Kamagra, Kamagra Chewable, Kamagra Oral Jelly, and Kamagra Effervescent Tablet.

    This Pill needs to be used around 30 minutes before you want to have Intercourse. The effects of Medicine can last for up to as long as 4 hours. These pills can be taken only once in 24 hours.

    2. Suhagra: This Medication can be Available in various doses, like Suhagra 50 mg, and Suhagra 100 mg. You can use these Pills between 30 minutes to 1 hour before you wish to sexual activities.

    The results of this Medicine can last for as much as 4 hours. You can take this Medicine just once in 24 hours.

    3. Tadarise Tablets: This Medication can be Develop in Various forms and Doses Like Tadarise 40 mg, 10 mg, Tadarise 20 mg, Tadarise 60 mg, 2.5 mg, 5 mg, Super, Extra Super, Pro 20 mg and Tadarise Oral Jelly.

    You need to take these Pills, around an hour before you have sex. The medicine starts to work within 30 minutes of it being made, and the effects can last for about 4 hours. You can take these Pills only once in 48 hours.

    4. Cenforce Tablets: This Medicine can be Available in many strengths and Power like Cenforce 200 mg, Cenforce 150 mg, Cenforce 100 mg, 25 mg, Professional, D, and Cenforce Soft. You should take this Pill within an hour of you engage to have sex.

    The effects of the medication will start to show in about 30 minutes, and they will last for around 4 hours.

    5. Fildena Tablets: This Medication is available in different kinds of forms and strengths such as Fildena CT 100, Fildena 150 mg, Fildena Professional, Fildena 120 mg, Fildena 100 mg, and Fildena Double.

    Thus Medicine should be had by you around 1 hour before you wish to have Intercourse. The Pill can affect for almost 4 hours. This Pill can be taken only once in 24 hours.

    6. Malegra Tablets: This Medicine can be Available in Different strengths and forms such as Malegra 50 mg, Malegra DXT Plus, Malegra Oral Jelly, Malegra 200 mg, Malegra Pro 100 mg, Malegra 100 mg, and Malegra FXT Plus.

    The effects of Medicine can be seen with 30 minutes of taking it, and they last for as long as 4 - 5 hours. You can take this Medicine just once in 24 hours.

    7. Vidalista Tablets: This Pill can be got in many forms and Power like 2.5 mg, Vidalista 60 mg, Vidalista Black 80 mg, Vidalista 40 mg, Vidalista CT 20 mg, Vidalista 20 mg, Vidalista Professional, Vidalista 10 mg.

    You need to take this Medicine around 30 minutes before you want to have sex. The impacts of the Pill can last up to as much as 36 hours. You can take this medicine only once in 24 hours.


    • What is ED, and what causes it?
    • What can I do to prevent ED?
    • Can you help me, or do I need to see a specialist? (Ask for a referral if needed)
    • What tests will help find the cause of my ED?
    • What treatment(s) can help me? How do they work? What are the side effects?
    • What happens if the first treatment doesn't help?
    • If surgery is my best choice, can I talk first to a patient that you've helped?
    • Would a sex therapist help me?


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    Q. Can Low Testosterone Cause ED?

    Testosterone isn't the only fuel for a man's sex drive and performance. But low testosterone can reduce your ability to have satisfying sex.

    Lack of sex drive and erectile dysfunction are sexual problems that can result from low testosterone. If low testosterone is the cause, treating it can help.

    Q. Can Erectile Dysfunction be cured?

    In many cases, yes, erectile dysfunction can be reversed. A study published in the Journal of Sexual Medicine found a remission rate of 29 percent after five years.

    It is important to note that even when the ED cannot be cured, the right treatment can reduce or eliminate symptoms.

    Q. Is it safe to have generic Medicine?

    According to the FDA, all drugs, including brand name drugs and generic drugs, must work well and be safe.

    Generic drugs use the same active ingredients as their brand-name counterparts and, therefore, have the same risks and benefits.

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    It gives All kinds of ED Medication Like Kamagra, Cenforce, Fildena Etc....!!!

  10. I have had pharmacogenetic testing (testing medications with my genetics) and found that one of the most common BBs (metroprolol) is a drug I should never take. With others I may need a higher dose, or a lower dose. This is one possibility that could affect your response to BBs. I had to try several before finding one that suits me. I've also taken diltiazem successfully. I always make a printed list of questions and sometimes my EP will want to read a quote from a research article that I have printed on my question sheet. I open a document for questions a couple of weeks before an appointment and add to it and refine it as I think of new questions or approaches. Good luck!
  11. thanks Pistol. Its so good to hear how it has helped you and how often you run them. I am going to call cardio tomorrow and ask if we can try every other day to start, and then adjust (hopefully down) from there.
  12. Last week
  13. I feel your pain, we all do at times. While I have accepted my illness/life I get the occasional bad day where it feels like too much. Hang in there. As Scarlett said “tomorrow is another day” and hopefully less symptomatic.
  14. Oh I am so sorry that you are going through this. I agree with what everyone else has said. I come armed with articles, relevant sections highlighted, a list of questions and always try to see a specialist nurse practitioner. I have NP s for both cardiology and neurology. They have 45 minute appointments as opposed to 20 for the actual doctors and are both brilliant about dysautonomia. If they don’t know they ask the doctors. If I am seeing my male cardiologist, who tends to shrug and say “well, you’re autonomic nervous system doesn’t work properly” if I have stumped him, I always make my husband come into the room with me. Unfortunately, that helps. I am not being sexist guys, just stating a fact that we women understand well.
  15. Hi, P, thanks for the empathetic and comforting message! I’m sure you know when you have this disorder it’s a lonely place. Everyone has written me off as a nut who seems to have a new diagnosis every month and a new symptom de jure each morning. Just hard to predict or plan anything. It’s been tremendously impactful. My doctor is great and I’m sort of progressing along. Thankful to have this forum to share, learn, and listen.
  16. Several people have witnessed the seizures ...just not the neurologist .. when I first had a grand mal seizure .. the interns and Drs argued at my beside about rather it was a seizure or not. The interns were firm , and furious that it was a seizure and an EEG should be given and the Drs refused. After that I proceeded to have several episodes and because they are looking for epileptic patterns ,but believe I'm not having what they consider to be epileptic seizures they aren't too concerned about them . They happen several times a week, which is easy compared to when they first started . Thank you for the information about bp, as well as the seizure link. I still need to get a bp machine .so that I can catch the things that are happening myself. I believe I become more symptomatic before my monthly cycle ..I'm not sure why this is ..but my tilt test is scheduled for this week ..but it is after my cycle .I'm not sure how the rest will turn out because of this. The test is being ordered by a cardiologist , I believe it is only being ordered because I passed out right in the elevator on the way to his office and it became almost an emergency .
  17. Hi @Scout, as others have said I think it is difficult to, in a short office appointment with a doctor who may or may not be the best communicator, to help them to understand your condition, current issues and what has worked/ hasn't worked and get to a place where something beneficial comes out of the appointment. I've typically had the doctor either not really hear me when I speak to them or have no idea about POTS but are sure that all my symptoms must be that and so I should go back to a POTS specialist (who are also without full answers). What I have found that helps is create yourself a plan prior to the appointment prioritizing the most pressing issues, something like this: 1. Here is my diagnosis 2: Here are the symptoms I need helped for a better quality of life 3. These are the things that have/ have not worked 4. How can we best treat those today? 5. Is there other testing that will better allow us to treat those? And practice your delivery of what your going to say with time and understanding being the biggest hurdles for the appointment. I know for me trying to give a 10 year medical history with many ups and downs and question marks throughout it is impossible to adequately give to a doctor only has 10-15 minutes to get caught up. And then also being realistic; there is no general 'cure' for POTS and research and understanding on this illness is still in its infancy, but different symptoms can be managed sometimes well sometimes not depending on the person and their particular reaction to a medication -- what works for one of us may do nothing for another. All these are just based on my own experience and struggles communicating with doctors, some good some bad, so don't see this as in any way professional advice.
  18. @Robert J congratulations on getting to ABD! That in and of itself is worth celebrating, ESPECIALLY with this awful condition. I finished my PhD 2 years before I got full blown POTS and had to stop working. I simply couldn’t have done any of it as sick as I became, I couldn’t even stand up for a couple of minutes. I can no longer read anything even remotely “difficult” (ha!) like long magazine articles. I used to read legal documents for fun to give you an idea. Brain hypoperfusion is real! Like Pistol, I have those same triggers as part of my hyper POTS. Meds help, as does exercise but I, too, am home bound and have to completely avoid those triggers or my BP soars, the fatigue is terrible etc etc. You should be proud of your accomplishments and now focus that same determination on getting as well as you can, no matter what that is.
  19. I have UCTD too which showed up about a year after my hyper POTS diagnosis but I suspected autoimmune disease for 20+ years. I had sudden onset POTS after a bad virus, the classic autoimmune trigger. My first visit with a cardiologist (after 2 years of treatment by my neurologist) for new onset of seriously high BP spikes and hypertension generally he said because of the positive ANA I should get immunoglobulin therapy. After I started this, subcutaneously, lots of things improved but I still get hypotension and BP spikes with ANY “stressful” activity—upright too long, talking on the phone, going to dr appointments, trying to think hard, emotional upset or PT etc. Pistol and I are eerily similar and I am on several of the drugs she is (my Drs are very willing to listen and try things) except IV fluids and the immunoglobulins for me. My neurologist is very against benzodiazepines too but personally I think they might help with very limited use, it’s something that I plan to ask about at my next appointments. If I know that I am going to be doing something stressful I take an extra beta blocker or if I will be upright for >10 minutes I drink extra fluids. They help but not enough for a normal life. I recently discovered that drugs ending “ine”, diphenhydramine, mitrazipine (which I used for sleep) cause hypertension so I have stopped them and in general my BP is lower but it hasn’t stopped the spikes. That’s the SNS going nuts and I haven’t found anything that stops that yet.
  20. @Robert J - these are typical triggers for POTS and controlling them is a challenge. Meds help some but I have to completely avoid them in order to function.
  21. Dear @Scout - this a quote from an article about AD from Wikipedia: AD occurs most often in individuals with spinal cord injuries with lesions at or above the T6 spinal cord level, although it has been reported in patients with lesions as low as T10.[ I used to think that my symptoms - similar to yours - are caused by this but my autonomic specialist calls it hyperadrenergic POTS. AD has similar symptoms but is related to spinal cord injury. The hyperadrenergic state in POTS is caused by autonomic dysfunction. This sounds like hyperadrenergic POTS to me, which runs in my family. Beta blockers CAN be effective but are not for all people. My sisters and I all take Carvelidol, which has proven to be the only BB effective for us. However - it alone is not enough for us, we also take Diltiazem ( a calcium channel blocker ) and guanfacine as well as many other meds needed to control our fluctuating BP's. Your specialist may have to experiment with other meds; it took trials of many medications ( pyridostigmine, Midodrine, several beta blockers, clonidine, Norvasc etc ) before we found the right combo. Here is a list of meds commonly used in the treatment of hyperadrenergic POTS ( assuming that is what you have ), from an article on our website: Some of the medications that have been found helpful are: Adderall, Ritalin. Florinef. Clonidine. Beta-blockers (especially the combination of Carvelidol and Labetaiol) Midodrine. SSRI/SNRI. Modafinil. Methyldopa Maybe your specialist would be open to discuss these meds with you. ---- As in advocating for yourself: I used to bring literature about hyperadrenergic POTS with me to my appointments in addition to a list of questions. If the physician would not address my concerns or act ignorant or refuse to change meds I simply fires him/her - I had to do that to 5 cardiologists before finding the one that knew what was going on. And that one is an 8 hour drive away!
  22. I wish I had some magic words for you, but I have this situation with many of my highly respected physicians. I had an appt last week where I was told the doctor "can’t prescribe my DDAVP or fluids because there isn’t enough data and besides drinking fluids is exactly the same". I tried to reason with him, showing my records of awful BPs and how the fluids fix everything and nothing else does... it’s a huge bummer. The kind doctor who prescribed these things for me is no longer seeing patients, so I’m in trouble, not being able to find anyone to take them over so far. My theory is that they get defensive when they can’t help and they kind of shut down. It frustrates them when they don’t have answers for us, and makes them less interested in thinking creatively. I usually dread these visits. I’m often told "you need to get used to not having a diagnosis/answers, this is your new normal" and when I say I need treatment they say they can’t because I don’t have a diagnosis. Really?? Good luck!
  23. Yes. I have. I was diagnosed with hyperadrenergic POTS and NCS and I have both sympathetic overcompensation and sympathetic withdrawal. The first means that something ( a sudden drop in BP for example ) triggers the sympathetic NS to jump in to compensate and it does so in excess ( dumping too much adrenaline ). causing fight-or-flight response with all the fixings and - in my case - even leading to seizures ( too much vasoconstriction causing cerebral hypo-perfusion ). The latter means that when normally the sympathetic NS SHOULD activate ( like in orthostasis, when adrenaline should be excreted to cause vasoconstriction to counter the blood pooling and drop in BP ) it fails to do so, causing a sudden drop in BP leading to syncope. ---- I have not tried Valium but I know that some people do take it for their POTS symptoms. I have a prescription for Ativan ( also a benzo ) to take when in a stimulating environment to PREVENT the dumping of adrenaline, but I take it very sparingly and try to limit stimulation by avoidance of triggers. Once I am in a spell it is ineffective. Also - my autonomic specialist does not support the use of benzos for POTS b/c it is not a treatment but rather a "crutch" to mask the anxiety that comes with adrenergic surges and leads to dependence ( which he said is common in dysautonomia ). To me - in addition to medications commonly used in the treatment of POTS - the single most effective treatment for problems concerning the sympathetic NS are IV fluids. I believe this is b/c having the extra volume creates a normal pressure in the blood vessels, which in turn prevents the triggering of the ANS to dump adrenaline to cause vasoconstriction. Since getting weekly and more infusions my symptoms have greatly improved, hence proving the effectiveness of the infusions.
  24. @Scout this might be what happens to me before passing out or having a seizure, people tell me that I just stop doing anything and have a blank stare for a few seconds and then go unconscious. I am aware of the staring too, and I feel simply "empty". "Void of all senses" might be a good way to call it, for those few seconds I am not really conscious yet not unconscious either. Sometimes my lips turn white or blue when this happens. I believe this is pre-syncope: our brains are not receiving enough oxygen. the link below explains it - and also that nausea afterwards is typical. @Always_anastasia - how often do you have these episodes? Have they ever been witnessed by anyone? Usually someone describing what you do during them is helpful to doctors. When I was at my worst I would have them anywhere - in doctors offices, on the street, in stores, in restaurants … so mine are usually witnessed and my doctors actually witnessed them themselves. Have they ever done an EEG? Have they done orthostatic Vital signs ( taking HR and pulse lying, sitting and standing ) - you can actually do this yourself if you have a BP machine. PM me if you need to know how. If this test is abnormal you can show your doc that you are legitimately a candidate for dysautonomia. I know exactly what you are talking about - good way to describe it!! If your neurologist does not take you serious than I personally would look for someone else. I am so sorry that you are alone in this - it is a very scary thing to go through. To both of you - the following article describes some of this: https://www.epilepsydiagnosis.org/seizure/autonomic-overview.html
  25. Hi Kim! I'm afraid I don't have any answers, but I am really interested in people's replies. I have wondered the same thing, as I've been told my SNS is over-active. What are your main symptoms from having an over-reactive SNS? I wonder if ours are similar.
  26. I'm not sure if what I am having sometimes occur is a seizure, but I think it may be. I've never had one at a hospital etc, so I cannot confirm with complete certainty that it is, but basically when I have a severe dysautonomia flare, I just "go somewhere else" mentally. My brain feels like it stops and I just stare off into space and cannot think or move or do anything. I just space right out and go wide eyed and feel very, very odd. These usually last anywhere from 10 seconds, to a minute. My body doesn't usually seize, but I have had several occasions where my shoulders will involuntarily hunch, or muscles will spasm as this is happening. It's very odd and scary. I usually feel nauseous afterwards. I hope you are OK and make sure you speak to a medical professional about your seizures.
  27. I'm seeing my specialist again soon, and I need advice on how to better self advocate. Basically, the last time I saw her, she just said to try the same beta blocker that previously made me so much worse. I clearly can't tolerate BBs, and she still insisted on me going back on them without offering anything else. She seemed impatient and I had so many questions that weren't answered. So, when I see her in just under two weeks time again, I want to be better at telling her I need her to help me and not offer things which haven't worked in the past. I know there's lots of other options out there in terms of meds. In short: my biggest concern is my BP, which still sky-rockets regularly to hypertensive crisis levels. At rest, it is low (the lowest was around 70/40 or a bit below). When I do any activity, or when I shower for example, it goes upwards of 180/110. On my file with them, it says that I had "autonomic dysreflexia", confirmed through testing, but they never seem to mention this to me or act like it's relevant. Any advice on how to move forward and self advocate for better care would be wonderful. I would simply find another specialist, but she is literally the only one in the state and is meant to be one of the best. There's another specialist about 10 hours away from me, and if needs be, I will do my best to get to him, but it would be nice to have my current specialist just offer a better duty of care and help me find a suitable treatment regime. Thank you so much for your time.
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