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ishaqamina

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  1. Maybe ask for an eeg to rule out seizures. Till my son had them I didn't realise just how many different types of seizures there were and how differently they presented. Epileptic drop attacks are also known as astatic seizures. I think it's worth ruling out
  2. I call it an internal tremor and it became really unbearable, like my body was buzzing and vibrating and I was having a seizure on the inside. I spoke to my doc and asked to trial clonazepam 0.5 x2 and it's been a week...... no tremor.... I pray to god it lasts
  3. Have you looked into myoclonic astatic seizures. my son had this epileptic syndrome where he would jerk as though punched in the stomach and then drop. This increased rapidly week to week till he was medicated . Not sure if it's relevant to you but the " drop" bit just brought back memories
  4. I was dx with pots a few years ago but was suffering with it 5 years before my dx. i've recently been diagnosed with did ( dissociative identity disorder) formerly known as multiple personality disorder. I always find my pots symptoms flare up drastically at the time of my dissociative episodes.
  5. Sorry you're strugging. Insomnia is difficult to cope with and can have a massive impact on your psychological state. I know it did for me. I'm taking quetiapine 25mg an hour before bed. It works brilliantly, leaving no horrible residual effects the following day. It's an antipsychotic in much larger doses but can be prescribed off label for insomnia in smaller doses. Its been a wonder drug for me.
  6. " God forbid I should EMOTE lest it throw my autonomic nervous system into a tailspin" I know this feeling. Its like we dont even have the right to feel angry, sad, anything We just have to carry on like zombies, never allowing our emotions to spike. It tough on those difficult days where all we want to do is cry like a baby and scream how its not fair. I hope you move past this period soon and begin to feel better xxx
  7. Sorrry you're feeling so ill. I would have to say that i also became very symptomatic with beta blockers. HR became very elevated and i felt very jittery if that makes any sense. Like i was shaking/vibrating inside. This developed to extreme chest pressure and pain followed by wheezing. This was over a period of 2 weeks after which i stopped.
  8. In addition to my last post. I've just noticed what you said about the night time anxiety. I experienced this for a long period of time. I couldn't sleep till around 3-4 am and I felt as you've described. I would have to say this for me personally is my worst symptom. I find this feeling unbearable. The anxiety and insomnia combination can make you feel terrible. Whats worked for me is a small dose of quetiapine every night . 25mg. Within an hour you'll be asleep. I take it at around 9.00 and by 10 i'm asleep. A normal sleep routine makes a massive difference to your day. Obviously I still experience anxiety but not to that extreme extent as sleep puts an end to it before it gets to that unbearable point.
  9. I didn't tolerate Beta blockers very well when I tried them to help reduce my heart rate. I hated them and they made me very ill. I went for an appointment yesterday and my gp decided to put me on BP meds due to high readings the past few visits. Most bp meds he said probably weren't suitable for me due to them being geared towards the heart, often making my tachy worse and adding extra symptoms. He decided to try me on Indapamide .A not so popular type of bp med but one he thought logically would be suitable for me, as a POTsy as its action mechanisms are the kidneys, not the heart. This med is a diuretic and lowers bp by making your body get rid of salt stores and water in the body and muscles. This relaxes the muscles which in turn reduces BP. Electrolytes need monitoring while on this med. He's hoping that reducing BP will also bring my HR back to normal functional POTS mode of 110. Its been around 130-160 since my BP's been high. I'm only on day 2 but so far so good. My HR seems lower already, no nasty side effect like the Beta blockers which I REALLY felt the effects of. Generally feeling MUCH better than I did 2 days ago. Got up 6.30, did the school run, cooked, cleaned,prayed. A good productive day basically compared to waking at 1.00pm, watching Netflix all day, not being able to get out of bed due to excessive hr of 130+ and feeling shaky, jittery, heavy headed, groggy and tired. Overall I would say at this point its a med geared in the right direction for the lowering of High Blood pressure
  10. i took beta blockers for 2 weeks before i had to come off them. I developed chest pain,shortness of breath and strong ashma type symptoms such as wheezing with them. This got worse over the course of the 2 weeks.They didn't really do much to alleviate my POTS symptoms either. They definately didn't work for me.
  11. Hi I thought I had Addisons before I knew I had POTS. I had my cortisol levels tested with the ACTH stim test. I was also producing milk at the time when I shouldn't so my pituitary hormones were tested to look at secondary adrenal insufficiency. All my tests were normal which caused some confusion as to why I was lactating....another strange symptom of my POTS. This has resolved now. My adrenal glands were also tested for an adrenal tumour (pheochromacytoma) by means of a 24hr urine test looking for something called catchelomines? A byproduct of adrenaline I think. Again negative. My adrenaline levels were normal . I spent a lot of time on an addisons support forum before I came here. I kind of hoped and prayed I had Addisons just so that my illness could be recognised, treated and managed .I had all the symptoms , hyperpigmentation of the gums and nails included. I could have sworn I had Addisons but I didn't. Addisons can be an underlying cause of POTS . However POTS can also present as Addisons wihout it being that . I would suggest ruling out both Addisons and Pheochromacytoma before accepting a dx of primary POTS.
  12. This is a post I've been meaning to write a while now but have put off due to its controversial nature.I discovered this site a few years ago at the start of my POTS journey but haven't posted In years. A brief history. I obviously have POTS and like others have been on an endless journey trying to figure out why. The docs have exhausted all possibilities and have come to the conclusion that I have POTS and they don't know why. They looked into many medical avenues and each led to a dead end. My hearts fine, my heads fine, my hormones are fine as is my pituitary and my adrenal glands. I don't have MCAD or EDS yet I feel far from fine. At the lowest point of my illness I felt helpless and hopeless. Broken with no means of getting fixed.My illness made no sense. How was it possible to feel so sick and debilitated yet be so normal on paper. For every reaction there has to be an action, a cause yet here I was, broken in every way imaginable but nothing to indicate a medical cause for my deterioration. My heart rate was the easiest symptom to detect in my long list and there were many obvious symptoms which were a consequence of a fast HR but this list of mine seemed to be ever expanding and some of the symptoms were just plain weird, like the smell of ammonia that only I could smell, and the white smokey thing I would see or the black shadowy smoke which sometimes looked like something I could only describe as a shadow person...... The strange sleep/awake situations. The OBE and sleep paralysis.Feelings of fear and uneasiness as though I was being watched andI just feeling like I needed to get out of the house and run. All things which had me believing that I was losing my mind. I also felt like I developed a jekyl and hyde personality as my symptoms worsened. I had a 24 hour adrenaline/catchelomine test to rule out adrenal tumour (pheochromacytoma) and to look at my adrenaline levels and these were normal so I didn't have an adrenaline component to my POTS so the flight fight response couldn't be causing these feelings of fear and this extreme anger/irritation/change of behaviour. I also wasn't having seizures even though I sensed strange smells and had severe shaking episodes. It was like there was electricity running through my body and whenever I had this shaky feeling my mood changed and I learned to control my feelings but inside I felt like screaming and just being mean and nasty. I didn't recognise this personality. I felt like I was 2 people. I was the external me that was nice and the other was evil and nasty and this was the me that lived under the surface, rearing its ugly head when my symptoms were at their worst. I seriously considered the possibility of being clinically insane. Maybe I was schizo or had a dual personality disorder but these mental illnesses wouldn't explain my physical deterioration and the mental conditions didn't fit their profiles either, having Schizophrenia doesn't cause POTS . I was ill, I knew that but some of my symptoms seemed crazy I didn't know what could be breaking me down both mentally and physically. I Wasn't having seizures so that being a cause has been ruled out , normal adrenaline levels, normal bloods, hormones, everything normal. I didn't consider anything other than a medical cause for my illness. I have always been a practical person, not at all open to alternative theories until it hit me in the face full force. So here comes the controversial part....Most will probably think me crazy and if you do I would appreciate it if you could try to avoid calling me that. Just ignore this post and my opinion as that is all it is, my opinion. However there may be a minority who would consider the possibility of POTS being a symptom of a spiritual illness. I'm not talking about those who have POTS with an identifiable cause like EDS or MCAD but rather those who have POTS with no known cause and have strange unexplainable symptoms that they don't dare discusss to anyone for fear of sounding crazy. If you have these you'll know what i'm talking about. I feel very hesitant to write the next sentence as I know how ridiculous it sounds to people who are not strong in their religious belief. Those of strong Christian Jewish or Islamic faith may consider the possibility of what i'm talking about but am scared to say. I know it sounds stupid and if I hadn't experienced what I have I would have been the one who laughed the hardest but I cant deny what happened to me and therefore cant deny the fact that my POTS is the consequence of a spiritual illness which has improved through prayer and seeking spiritual treatment Faith healing for me resulted in the most unexpected of all things. It was scary to see and hear what was causing me so many problems in my life but it was brought into plain sight and the process has given me my life back and strengthened my spiritual wellbeing. Before, I had all the symptoms mentioned on here.The weight and pressure on my chest was unbelievable. I went to A and E numerous times for fear of having a heart attack. Now I feel like the weight in my body, on my chest, my shoulders has been lifted. My arms and legs no longer feel heavy and weighed down and my head is light and no longer has that feeling of there being something in there, that heaviness and pressure . The tingling and numbness in my arms is significantly reduced. I used to have severe left sided migraines every day. They would make me cry but now I get them only rarely, say once every 2-3 months.That crawling feeling that I used to get under the skin is less too. I used to have a standing HR of upto 170 and higher if I added stress into the mix and near fainting episodes. My heart rate is still high as my body cant miraculously heal when so much dmage has been done to it but it stays around 130 and I don't feel as symptomatic. I wouldn't say i'm cured, I still have POTS but my Symptoms are manageable. Its POTS on a good day and i'm completely med free. I think i'll leave it there. If anyone is interested in learning more about the details of my journey please feel free to ask. You can pm me if you want. To everyone who thinks i'm crazy, I don't blame you for thinking that. I probably would have felt the same 3 years ago. I ask that you respect my beliefs. As I said, I have exhausted all medical tests appropriate for the dx of POTS and tried many meds and nothing helped and no abnormalities were found in my medical testing. It was only at this point that faith healing was even considered. I don't advocate anyone jumping to conclusions about their own illness before extensive medical testing and conventional therapy has been carried out. I'm not writing this to get a reaction or to cause controversy. I'vebeen reading some posts on here where people are feeling so desperate with their symptoms and are looking for answers and they are scared and don't understand whats happening to them,especially the weird unexplainable symptoms, and medical testing just isn't providing them with any answers or solutions . I've been there and its a scary place to be. I reached a point where I felt so hopeless and scared and my answers provided me with hope and an understanding to my situation. This helped improve my symptoms and I feel so much better after my method of treatment. I wasn't going to post anything about this alternative method of treatment but I just couldn't not say or do anything. This forum is dedicated to helping others through personal experiences, sharing whats worked for them and what hasn't. If even 1 person benefits from reading this and is able to get relief from seeking an alternative route having exhausted all other possibilities then it worth me posting a crazy sounding post.
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