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Amber

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Everything posted by Amber

  1. That is a facinating video sue1234. I have Fibro,Pots and herniated/bulging disks in my neck and I always believed there was a connection. My first severe fibro symptoms started after a whiplash injury from a car accident and though I also had Pots symptoms then too, both my fibro and Pots got infinitely worse when my disks began bulging years later. The doc said my MRI showed flattening of the spinal cord but not nearly enough to explain my severe pain etc. I always believed it was the position of my neck for the test that made it look not so bad. Lets face it, in real life we don't hold our necks that way. I even discovered by accident the pots connection because I tried to help my neck pain using a home traction device and instantly my heart-rate and bp went crazy. Needless to say, I never did that again. It was clear that moving/touching my neck affects my CNS. I'm not sure if its where you found it but I just did some google-ing and found the video on Youtube by searching for Dr. Andrew Holman. Its called "Fibromyalgia: A Unifying Theory" by Dr. Andrew J. Holman. I can post the link to it but want to make sure I am allowed to post external links first. thanks for posting this...now I know I'm not the only one who thought there was a connection.....
  2. heiseygirl, I have a link to a great article on variant (vasospastic) angina that might be helpful to you. Its not specific to those with POTS but it may help you figure out if it sounds like what you are experiencing. Maybe you can take it to your doc to see if he can try any of the diagnostic tests mentioned in the article. Thats what I'm going to do with my doc. http://cmbi.bjmu.edu.cn/uptodate/coronary%20heart%20disease/pathophysiology/variant%20angina.htm hope that link works and that it helps give you an answer too. 8 ) amber
  3. Hi! I'm pretty sure that I've been experiencing vasospastic angina for the past year. My docs recognise that I'm having angina but they can't figure out (or agree) on why, since my coronary arteries showed up normal on a chemical stress test. The docs have never mentioned Vaso. angina but from what I've read it describes me pretty well...not sure why they didn't think of it. Im waiting on another appointment to request further investigation but I want to go in with as much knowledge as possible about it and how it relates with my POTS. I know that there are at least a few on this forum with Vaso angina too so hopefully you'll be able to help me with these questions based on your experiences..... 1.I hear that calcium channel blockers are recommended for V.A. but Beta Blockers are contraindicated. My TTT showed I'm very beta sensitive so how do I control my tachy without my BB? Can one use both? 2. I've also been diagnosed with PCOS (polycystic ovarian syndrome) and my endo wants to put me on spironolactone (aldactone) to treat the hormone imbalance but I hear its a mild diuretic and I think may affect vasospasm too...anyone ever use this med with having POTS? 3.For those diagnosed with V.A. ....how did you get your dx? Did you have an angiogram? I hear there is a drug they can give you while in angio that can trigger the vasospasm to clinch the diagnosis. Doesn't sound fun but I am tired of the doctors guesswork...I want a firm dx so we can get on to treatment. Does anyone have any information or articles on POTS AND Vasospastic Angina together? thanks....seems weird to have to dx ourselves and then tell our doctors what to do for us but they seem so clueless sometimes.... Amber
  4. Thanks Yuliya! Sorry to hear that you experience the same thing. I guess whats throwing me off is that is doesn't FEEL like POTS to me. I am used to potsy days where I can't even sit up because of faintness but these new episodes feel more like I'm going to pass out due to pain, and constriction in the chest and shortness of breath. Like suddenly my heart has just stopped in my chest.....its a horrible feeling and one that I never really thought was a POTS thing..... I guess we learn as we go... 8 ) thanks
  5. I am so frustrated!! I have had pots for most of my life but was only diagnosed in 2008. I think it took so long because I also have mitral valve prolapse, CFS and Fibrbomyalgia and there was so much overlap in symptoms. Anyway I have been on BB and midodrine since then and was managing the daily dizziness, near-syncope etc. I could walk reasonable distances, like the mall, although slowly. Then suddenly last february I began having severe episodes of shortness of breath and chest pain/squeezing follwed by syncope whenever I exerted myself even a little. I often feel ike I am being strangled from inside my chest....my heart pounds in my throat and head too. I can't catch my breath and often have coughing fits. I become so debilitated that I need a wheelchair even to get to my bathroom. It takes me weeks or even months to get back to being able to walk even in walmart leaning on a cart. I get so pale I look dead and so lethargic I can barely speak. Every time its been bad enough that my hubby thinks I'm having a heart attack he takes me to the ER and other than a slightly elevated cardiac enzyme and some episodes of tachy, they can't seem to figure out why. Admittedly they don't really look hard...xray and bloodwork and then they always send me home to follow up with my doc. The best explanation I get is that my heart is not getting enough blood flow which makes sense but why all of the sudden and why in such severe episodes? I finally got to see my pots specialist today after waiting a YEAR because of him cancelling so many appointments and his answer was that my heart wasn't getting enough blood flow because of the blood pooling in vessels in my legs. But this explanation isn't satisfactory in this case for several reasons... 1. I already knew I had that problem which is why I am on midodrine (even though he's never done venous testing on me) 2. these episodes never happened before and nothing has changed 3. the epsiodes can happen while laying down and especially while walking which is when venous return is supposed to be best due to the muscle motion helping squeeze the blood back up 4. my blood pressure is not usually low during these episodes (sometimes its high) He suggests that I just need to exercise to strenghten my legs but I can barely stand up half the time and even if I could exercise, thats what I WAS doing when these episodes started. I only stopped exercising AFTER I became debilitated. He didn't listen to a word I said.... I don't know whats going on with me and no doctor will help....they just pass the buck.... I feel like I am going to die of a heart attack before they figure out that I'm not over-exaggerating how severe and debilitating these episodes are. Anyone have this happen to them or know whats going on?
  6. I can relate to the not sleeping thing. I have CFS and have found that I get insomnia if I get extremely over-tired....seems like a person would sleep more easily the more tired they are but I have found that the opposite is often true, especially with CFS. I have no real help to offer other than try not to get too over-tired (easier said than done!) and if you can't sleep at least rest as much as you can. Odd as it sounds, sometimes I need to 'rest-up' before I can fall asleep!
  7. Like some of you, when I faint I lose my vision and muscle control and have even seemed to stop breathing BUT i can still hear whats going on around me. I look completely out cold but can tell you what was being said while I was 'out'. I always wondered if it still counts as a faint if you are technically still aware.....
  8. Sorry I can't help with an answer but I sure can sympathize. I have been to the ER 3 times this year for chest pain and shortness of breath. It is worse with exertion...to the point of passing out. It is not like syncope from pots. Its definitly something going on in my chest....it is so tight and squeezing...like a bowling ball on my chest. During some of these times I've also had random tachys up over 160 even laying down and even with large doses of BB. I often feeling like my heart is pounding even up into my throat and head, regardless of whether my hr is fast or not. Sometimes it has been under 50 as well and like you, both fast and slow seem to hurt. The pain often spreads to the arm, jaw, back etc. Sounds like a heart attack or embolism but, except for a mildly elevated troponin level, my tests came back normal. (ECG, ECHO, Xray, bloodwork). I keep telling them I am worst with exertion but they only ever observe me laying down. Even my stress test was done laying down, using a medication to simulate exercise, consequently I didn't get the pain and so it came back normal. After these episodes I am debilitated for weeks to months. I can barely walk and get out of breath with simple activities. Now if I was a 60 year old man maybe the docs would take it more seriously but as a 37 year old woman with a history of pots, CFS and Fibro they seem content to tell me everything is fine and to go home and not to worry about it. Duh! Like I want my life to be months of bedriddeness punctuated by visits to the ER. Anyway, just wanted to say you are not alone.....
  9. My only recommendation is to always take mestinon with food and I don't just mean a cracker or small bite of food. I have found that unless I eat something substantial with my pill, I will get awful cramps and gi trouble. One day it was so bad I was sure I had food poisioning. I do get times where I have excess salivation and also occasional muscle cramping/twitching (but I get those anyway from my fibromyalgia) but its not too bad. One good thing is that my droopy eyelid (that noone has really ever explained the cause of) is no longer drooping on mestinon.
  10. Hmmm... interesting.... I'm not sure if its the same thing but I find that whenever I am in the midst of passing out...I start blubbering and I normally am not a cry-er. I thought maybe it was a bit of a panic response because I know I'm about to fall and can't stop it. Its just a sudden and overwhelming tearfulness. I wonder if crying is controlled by, or affects, the ans and maybe people react differently depending on whether they have too much or too little sympathetic activity.... <---- too tired to decide it that made any sense at all.....hopefully you know what I mean.... we all speak 'dysauto-nese' here don't we? 8 )
  11. I sleep horrilby and never feel rested in the morning....mostly feel like I've been run over by a bus. I wake 10-20 times a night even if its just for a few seconds, sleep very lightly and feel like I dream constantly. No matter if its been 5 minutes since I fell asleep or hours I always wake out of a dream and can remember them vividly most of the time. Honestly its like living another life at night. These dreams are very vivid, active and long and often unpleasant or even horrifying. I also experience sleep paralysis, and hallucintaions when falling asleep or waking sometimes. I have had epsiodes that seem like cataplexy but I think they might be some kind of drop attack or partial faint instead. I had 5 the day of my TTT so I think it must be related to POTS. I just lose control and collapse to the ground. I can't even get my arms out to stop myself. OUCH! I am still concious though. I had a sleep study that in my opinion was poorly interpreted. They determined that I didn't have narcolepsy since I couldn't sleep on the MSLT even though I was so tired I was physically ill. Also, I didn't have any deep sleep (stage 3 or 4) but the doc never mentioned it. I only noticed it later on the report. I also had an excessive amount of 'spindles' whatever that means but the report blames it on the use of benzodiasipenes (sp?) even though I'm not on any or ever have been. Don't think they believed me and I'm not even sure what it would point to. I've tried some sleep meds (low dose antidepressants) in the past but they only amplify the hallucinations and make me stupid all night so I sleep worse. I have CFS and Fibromyalgia in addition to the POTS so who knows where my sleep problems come from exactly.
  12. I have always heard that when your fingers look shriveled after a bath that its kind of an optical illusion in that your tissues are actually 'water-logged' not dehydrated. The wrinkly parts are a result of the engorgment of the skin. Maybe you're retaining water there due to an electrolyte or circulation issue. Have you been checked for Raynaud's?
  13. In Canada we have a company that (after training) links you to companies that hire people to answer phones for them. It's done from home with some required equipment like a computer and internet connection. It involves taking orders for Pizza delivery or taking ads for the local classifieds but there are also places like auto clubs, insurance companies and rental corporations that do it as well. Basically you are self-employed and offer your services to these companies and they pay on a per call or per hour basis. I've not done it myself yet but was considering it before I got very sick a few months back. Even laying/sitting down at a computer/phone for a set period of time is too much for me right now but if your health is predictable enough to plan to work several hours in a row it might be something to look in to. You might have to google search abit to find one in your state/country. I think I might know of one but I'm not sure if I'm allowed to post the name here..... Again, I haven't done it myself....I only know of friends of friends who do it... but from what I understand its legit..... I think you do have to pay a training fee though....
  14. Yes it's certainly not a diagnosis by any means.....just an idea to read up on in case you hadn't heard of it.........
  15. Have you ever heard of Intemittent Claudication? It causes leg pain that is worse with walking and involves the calves. I don't know if its related to dysautonomias but it might be something to read up on to see if it matches what you are experiencing.... Here is a quote from one website: What is Intermittent Claudication? Claudication is a term derived from the Latin word meaning "to limp". Intermittent claudication (vascular claudication) describes the pain that develops in the muscles of the legs when taking exercise, such as walking. Commonly, the calf muscles are the most affected, and patients describe a cramping discomfort, as characteristic of the pain. Initially patients may be able to walk through the pain, but as the disease progresses further, this is not possible and the claudication pain causes limping and can only relieved by resting. Most patients find that their claudication symptoms are worse on walking uphill. They can also be worse when walking barefoot or wearing flat shoes. Any situation in which the muscles of the legs have to work harder will worsen claudication symptoms. Some patients develop symptoms in their thighs and buttocks and PVD may also lead to impotence in men (Leriche syndrome). The development of particular claudication symptoms, depends on exactly which arteries are affected. The symptoms of claudication can be mimicked by many other conditions which cause pain in the legs such as arthritis and nerve problems (neuropathy). Neurogenic claudication is pain in the legs due to compression of nerves in the spinal cord and can be very difficult to distinguish from claudication due to arterial problems. Since the vascular system is impaired in some dysautonomias it wouldn't surprise me if the 2 conditions are often found together... good luck in your search.....I sure know how awful it can be to get somewhere and then wonder how you are going to get back to your car....
  16. It sounds like distinguishing the 2 conditions can be difficult (even with testing) so I guess I'd better pray for an endochronologist that really knows about Pots and how it can mimic pheos. I know for sure I have pots as my heartrate goes crazy when I stand or even sit up but my recent episodes of severe heart pounding (even in my head/face/neck) along with the sweating, headaches and breathlessness make me glad they are doing further testing to see what my catecholamines are up to. Probably just hyperadrenergic but who knows?
  17. I am so sorry you are going through this. My mom had a mitral valve repair done 5 years ago and still has pain from the wires in her sternum. They irritate the nerves as you mentioned and aggravate her chostochondritis. I think her ribs never completely re-fused after that surgery so she is always in pain, especially when she moves around. As difficult as having another surgery will be I am glad they are going to fix it for you....hopefully it will save you years of needless pain. My prayers are with you. It makes me really wonder why doctors don't do keyhole surgery more often to save such trauma to the sternum.....
  18. Just wondering if anyone knows the difference between a pheo 'episode' and a Pots one...? I will be seeing an endochronologist soon for testing but until then I wondered if symptom-wise you can tell the difference between them. Seems to me they sound the same....palpitations, tachy, sweating, lightheaded, headaches, blood pressure fluctuations, etc.... Someimtes episodes can come on suddenly but other times its more gradual and can last all day....are pheo episodes more dramatic than that? thanks
  19. I've posted about this before with no luck but wanted to try again to see if anyone else noticed skin breakouts after beginning use of a BB.... When I started metoprolol 2 years ago within a month or 2 I began getting this wierd type of acne (all over) that takes forever to heal. It's not really itchy so I don't think its allergic. Noone seems to think there is a connection but none of the treatments my dermatologist has prescribed has worked. I have also noticed that every time I increase my dose my skin gets worse...But I can't really just stop taking my meds to see if my skin clears up to know for 100% certainty. I want to ask my doc to try switching me to a different BB but with no literature stating that its been seen before I don't know if its likely he will agree.... Anyone have a similar experience?
  20. My pots doc just had to double my metoprolol dosage again because I am so tachy but my regular doc looked shocked when he heard how much I need. Is 100 mg in the morning and then again at night alot? I have to take midodrine (5 mg X 3/day) to raise my BP but feel that 100mg of the BB just barely keeps me in the comfortable range if I don't exert myself. I also take 60 mg of Mestinon 2X/day. (At 50mg 2x/day I was having tachys over 150 just laying down.) Just wondering if thats in the norm for POTSIES....
  21. I have been very POTSY lately (which I may go into further in another post) and I've also noticed I can't hear my Mitral valve prolapse anymore. Does anyone know if there is a connection? I asked my doc today why we can't hear it now and he said something about the valve stiffening up with age ( I'm 36) and so its quiet. Does that mean anything in terms of symptoms or severity or is it probably a coincidence that I'm having so much trouble right now? I can't catch my breath with even mild exertion, I am constantly nauseus and near-syncope when I move around and my cardiologist had to double my BB dose again because I am so tachy. Chest pain, white as a sheet, heart pounding so hard my teeth hit eachother......Needless to say I'm back using my wheelchair... 8 ( My poor GP is so perplexed by me.......He's like a deer in headlights everytime I come in......
  22. I am so sorry for what you and your daughter are going through. I remember what it was like to watch all those teenage milestones pass me by....my friends going to parties and proms and graduations while I lay in bed for years. I just held on to the hope that some day I would improve enough to enjoy some of the things I'd missed. As for the outside world thinking "at least she doesn't have cancer"....... I hope this doesn't offend anyone whose gone through cancer (and not to minimize what they go through) but I've sometimes thought that at least if I had cancer I'd have the chance to fight it, either win or lose, but there would be a definitive outcome. With that comes hope for a return to a normal life. With dysautonomias you can languish for years without being able to do anything about it or see an end in sight. Its harder to stay hopeful and positive when years keep passing you by... Just remind yourself, and her, that because she's young there's so much time for research and medications to come about that can lead to a cure or better treatment for her... Also, some people say that the young can outgrow it once the hormones of puberty calm down.... I hope thats the case for your daughter.... (((hugs)))
  23. You will probably experience some scalp tingling but it improves over time. its sort of like the feeling you get when you get a cold chill or goosebumps....wierd but not painful....
  24. I can relate.... I haven't had a problem with an authority like a security guard but have had many 'encounters' with regular people giving me heck for using a handicapped spot. Especially when I was in my 20's. People just see a young person and automatically assume you're not supposed to be disabled. I had one man come up to the car screaming and cursing at me....he was very frightening actually..... my husband told him I was disabled, showed him my parking permit and even that wasn't enough to satisfy him. It was only when we showed him my wheelchair in the back of the car that he stopped yelling at us. I still get dirty looks on a regular basis especially since I only use a cane now and not a wheelchair but at least noone else has been as aggressive as this man was. I'm all for people standing up against disabled parking abuses but, as we potsies know, some disabilities are invisible so a person can't just make assumptions.... sorry this happened to you but I'm glad you stood up for yourself.... hopefully this security guard will share this lesson with others...
  25. I have had 2 SPECT scans and each showed hypoperfusion (low blood flow) in certain areas of my brain. They were both done before I got my diagnosis of POTS. The first was done in the early 1990's and the other in 2005. Oddly, each showed hypoperfusion in different areas of my brain. Because I had been in a car accident as a child the doctor guessed they were probably the result of a mild brain injury. Now that I know about POTS I wonder if they are really just from that. I have also had several MRI's that showed mulitple "foci of increased T2 intensity" which basically means lesions or spots on my brain. They were ruled out as MS lesions. The radiologists report does say that these lesions can have various causes including infection or ischemia (low blood supply) I went to a doctor familiar with Lyme and he said the particular location of these low blood flow areas didn't really fit the pattern for Lyme either. Its a mystery ..... Its interesting that a bunch of us have had the same experience...... don't you just love the perplexed 'deer in headlights' look the docs have when they can't figure us out?!?
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