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Katybug

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Everything posted by Katybug

  1. Hi Bren, I read somewhere in my quest for POTS information that they estimate that we POTSies use 3x the amount of energy standing up than a normal person does...just to stand up! So I asked my cardio if that's what all the fatigue is from and she said that it is. She said the fatigue is the direct result of our bodies basically being in overdrive all the time and that we just use so much more energy doing basic functions (like taking a shower because our hearts beat so many more times than a normal persons) that we are simply exhausted by the time we get finished. We didn't talk about the NE but I have to think that it is a similar phenomenon to having an elevated HR all the time. In a normal person, if they have an "adrenaline rush" they would crash afterward and have to rest or eat or drink caffeine to get back together. So it seems like hyperPOTS is the double-whammie for setting us up for fatigue. I think its hard to help people understand how you can feel all wired up and totally exhausted at the same time?!
  2. Hi Meg, My temp is starts out low at 97.1 so I don't know what the docs would consider a fever for me. But when I feel overheated which happens after a 15 minute dog walk on a 60 degree morning these days, I usually have to put ice packs around my neck and sometimes on my abdomin to get my body temp to feel normal again. It seems like getting the blood going to my brain cooled is the thing that gets me back to normal the fastest. If I try to ice/cool other parts of my body it takes much longer to feel cool. I haven't tried a vest.
  3. Hi Bren! I haven't used Mestinon but I have been on Metoprolol (12.5 mg 1x/day) since early April. I actually had a really good experience with it. I had no side effects. It took 3 full weeks to start feeling any benefit from it but my cardio said that it would take 2-3 weeks especially at such a low dose (of course everything at low dose so I don't have a bad reaction). It brought my heart rate down about 15 bpm while I was standing. It doesn't get me in the normal range but it does make it a bit better. We are talking about whether we want to up the dose or not but have not made that decision yet. I hope you get a good result. I know you have been struggling lately. I have my fingers crossed for you! Katie
  4. I am sorry you are going through this with the doctors. I see a cardiologist who is the one that diagnosed me and a neurologist that is a POTS specialist. My primary and a previous neurologist both referred me to the POTS neurologist once we had the diagnosis because they felt unqualified to treat me. I remember seeing a post or some information on this site somewhere about an Autonomic Institute in Canada. Maybe you could look into going there to get treatment from doctors who specialize in this disorder. I wish you all the best and totally get your frustration!
  5. Hi Tennille, Sorry you have been particularly unwell. I shake when my heart rate is running particularly high, when my BP is running particularly low, or when my blood sugar is low. But I definitely have it most often from my heart rate shooting up. Like you, it can be just my hands or it can become my whole body. I usually have to lay down and get my heart rate down and that could mean 1/2 hr in bed or the rest of the day. It just depends on how cooperative my body is going to be that day. Usually when my body starts shaking badly that means I better plan on staying in bed or on the couch that day. Its usually my warning that if I keep going things will get worse quickly. It is almost like my muscles aren't getting something they need (probably oxygen)? Hope you feel better soon.
  6. Hi Sylvan. I, too, relate to many of the symptoms you describe. I have a POTS diagnosis but we are still testing to determine wich kind of POTS and I have prior health issues that complicate things as well. I agree with Corina that the best thing is to find some of the doctors in the UK that specialize in dysautonomia because these disorders are so complicated and are often connected to something else, for example you mentioned a possible link to CFS. I have a link to tick-borne illness. The specialists are usually familiar with these and know what tests to look at. I'm sure the folks from he UK that participate here will be able to give you some leads on the doctors. Good luck and congratulations on the pregnancy!
  7. Hi Momdi, Any help understanding and navigating our way through the healthcare system is appreciated! Thanks!
  8. Dr Khurana told me it tests to see if there are any parts of your body that have stopped/fail to sweat. Meaning you have developed anhydrosis and your autonomic system is failing. That's why your temp has to be monitored so closely because if you are one of the people who have anhydrosis and you fail to sweat, you are at risk for heat stroke. I don't fully understand it but I think it is related to the "Pure Autonomic Failure" that is one of the disorders mentioned in the Dinet Home Page. I was hopeful it would have explained my extreme (and gross) sweating but it doesn't do that. Although, I think in this instance I should be greatful for the extreme sweating if the alternative is no sweating since that can be deadly.
  9. I saw that you are in MD. I see Dr Khurana and I had a sweat test with him. I don't know if he is who you see as well. He has you lie down. He paints you with iodine, dusts you with powder, and monitors your temp under your armpit and in your mouth. Then, the room warms with dry heat and toward the end of the test steam is added. All I had to do was lay there. Its not pleasant (because we have POTS and are now heat intolerant, there was a time when we would have paid for something like this at an expensive spa) but not nearly as bad as a tilt test and you are laying down. There's nothing painful and he would have stopped if my temperature readings had gotten too high.
  10. Oh my goodness Bren! Don't throw in the towel! They just haven't found the right combination of things to make you feel a bit more normal yet. Maybe you can't tolerate the Florinef. I've seen others here on the forum write that they can't tolerate it. I did well with it and a beta blocker but this past month the doc added a drug for my migraines and now that I'm at the full dose of that it has made my POTS go wild so I have to call him tomorrow and tell him he's got to get me off it and we'll just have to try something else. Its a bit like Eistein meets Frankenstein with us I think. When they had my meds right I was having about 50% good days which was an improvement from about 20% good days without the meds. And we just started. I know its scary and frustrating but don't give up hope. I really believe that if you let it defeat you mentally that's more dangerous than what it can do to you physically. I tried to accept your friend request but something didn't work right. Can you try to resend it? Then we can chat.
  11. Lotusflower...I had no idea that florinef caused depletion of potassium but I have been craving bananas for the last few months which I thought was weird because I used to not be able to eat them because they gave me severe reflux. Then, bam, suddenly no reflux and severe cravings. And, I had started taking florinef. Isn't it funny how our body tells us what we need (sometimes ) ? Thanks for the information. I will tell the doc when I see him next and ask him to check me out too...might as well get ahead of that game and maybe I can avoid the ER. Bren...Are you feeling any better?
  12. Hi Bren. I always have some amount of chest pain and get short of breathe quite easily these days. The pain covers most of my left chest and goes down my left arm and sometimes sharply up into the veins in my neck when they constrict. It is always worrisome because I am not sure I would be able to dstinguish it from a real heart attack symptom but it is from the POTS. My cardio told me I will always have to use my judgement and go to the ER any time I feel that I am in danger and I should always go to the ER if I have these symptoms immediately followed by passing out to be evaluated. These symptoms didn't get any better or worse for me when I started my Florinef back in March. I never feel bad about calling my docs and checking with them about the heart meds if I notice weird changes so maybe you can call the doc that prescribed the beta blocker Monday morning and tell them what happened before you start it just to be safe. Hope this helps or at least makes you feel not so alone.
  13. I'm so sorry the doctors are giving you the run around. Don't give up. There are good health care providers out there and they can be hard to find. You have to be your own best advocate because, unfortunately no one else will be. It took 4 years and 19 doctors before I got the POTS diagnosis this past February. It was only because I didn't give in to their nasty attitudes. I'll keep my fingers crossed for you. It really just doesn't seem like it should be this hard, does it? I hope your ear is better soon. It sounds like an inner ear issue....in the quest to diagnose my POTS they did vestibular testing on me because of the dizzy spells. Could you see an ENT and maybe request this? That would at least give them proof that this is an ear issue and not your POTS. Good luck.
  14. Thanks for your replies. I had to take a dose of Belladonna last night because my GI symptoms got really bad. I don't take it often because it is addictive, so I have not taken it since I started the Topamax. It calmed all of my symptoms right away. Within an hour of taking my nightime dose of Topamax I was a mess all over again, so it really let me know that it is the medicine making my symptoms so much worse. I am calling the doc on Monday to find out how to get off of it. I think I might need to ween off.
  15. Hi everyone. I have really been struggling for the last month. I had to go off my POTS meds for some tests back in July which set me back to having maybe only 1 or 2 "good" days a week. I consider a good day when I can do 2-4 hours of productive activity and I can drive myself at this point. I was just starting to feel a little bit better (maybe 50% "good" days) when my doc started me on Topamax because my migraines had gone haywire. I was having them 3 or 4 days a week and some were lasting up to 4 days. Since starting this medication it seems my POTS symptoms have started to get really bad again but the side effects of this drug seem to be similar to POTS accordng to the dug pamphlets. Does anyone have experience with this? I just hit week 4 when you get to the full dosage and the migraines have gone away but I couldn't even complete a load of laundry by myself and I can only shower by sitting on the floor this week I am so sick with POTSitis. There has been no leaving the house and no driving for weeks. I am not sure I can stick with this med if the POTS will be this bad on it. Any feedback is appreciated.
  16. Hi. My cardio started me on .1 mg of Florinef and that works out fine. We tried upping the dose to .2 mg and I had a 5 day migraine and my head swelled visibly afer the second higher dose. We obviously dropped me back to the lower dose right away. I started seeing the my POTS specialist shortly after that incident and told him about it. He happens to be a neuro specalizing in dysautonomia and migraines. He said that headaches, particularly migraines are common with Florinef. Since I also have migraines, he said we would never try upping the dose on my Florinef again and is surprise I tolerate it at all. We have not tried other meds to up my blood volume so I can't help you with that question. We just use other options to try to control my symptoms. Hope you find a better solution.
  17. Hi Tinks. Sorry to hear you're going through this but it is unfortunately familiar. I am not sure how prevelant Lyme Disease is in the UK but your rashes ring a bell with me in particular. I have had quite a few of your symptoms and some of your rashes are consistent with Lyme Disease which is what we believe kicked off my POTS 4 years ago. Maybe they should add Lyme testing to your diagnostics if that is a concern in the UK. Hope you find some answers soon.
  18. I definitely feel worse when I am not on birth control. I was on Depo Provera for years. We did not know I had POTS and my doc asked me to take a break from it for a year just because I had been on it for so long. When I went off it, I was ok for a few months as it took about 4 months to begin to menstruate again. Then, it I had a few normal months, but then I got really bad. When I spoke to my GYN, he suggested I go back on the Nuvaring. I can't take oral birth control because it makes my GI symptoms worse (we've tried several brands). Since I'm 36, he wanted me on something that had a little estrogen to help prevent osteoporosis (Depo Provero is all progesterone, no estrogen). He wrote the prescription so I use the Nuvaring consistently without skipping a week so I do not get a period. It stops the hormonal fluctuation as well as the blood loss and I can definitely tell a difference. I was so extra sick the week I had my period. If the doctor writes the prescription that it is medically necessary to use it continualy, you should be able to get it covered correctly with insurance.
  19. This thread really did come at just the right moment! Over the weekend, I found out while trying to pick up my prescriptions (you know...the ones that keep my blood volume up and my heart rate down...kind of, sometimes...) that my insurance company apparently made some sort of error and cancelled my prescription coverage. While they were being less than helpful in trying to fix the problem on Monday, I told the manager I was on the phone with that my illness causes me to have symptoms that feel like I am having a heart attack and a stroke all at the same time several times a day except I never die and it is made worse by stress. That finally made her become helpful and fix the problem and apologize. Then this morning, in the shower, I had an acute attack and my legs turned a shade of purple that just isn't human. I couldn't even feel a pulse in my neck but my heart was racing. I just didn't picture this being my life. I have had to spend the rest of the day on the couch and I'm pretty sure that eating will be out of the question today.
  20. Yes, sometimes talking is very difficult. The effort, the word search, the concentration so I don't slur my speech like I'm drunk all become a problem. I don't feel like I have to cough but it does nauseate me when I'm really struggling. I try to stay as quiet as possible. My family has finally figured out that I'm not being rude, I'm just trying not to vomit but it took them a while. I have found that an ice pack on the back of my neck or on my chest when I'm feeling like that helps a little. Please know you are not alone. :-)
  21. I'm with you Christy. I just find that many coincidences hard to believe. If it looks like a duck and walks like a duck...do you ever feel like technology and lab tests have ruled out common sense?
  22. Thanks Sue. No I haven't. My mom and sister both have Hashimoto's so I have been tested twice in the last two year's for that but I don't think anyone has mentioned hyperparathyroidism. I'll look into it. I find it fishy that POTS so often has adrenal ties and I have a cyst sitting on my adrenal gland. I've just gotten to the point that I don't believe in coincidences that much anymore. I appreciate you responding!
  23. I had to have a kidney stone surgically removed in 2009 before we knew I had POTS. As a side note to all of the sonograms that were done then, I was told I have a small benign adrenal cyst that lots of people have and that they don't affect anything and not to worry about it. But I noticed on someone elses profile that they have one too. Do any other POTSies out there know if they have these? Could these be affecting us somehow?
  24. Hi Naomi. I am just starting my own POTS treatment but I noticed part of your plan involves investigating Lyme disease. I had/have tick borne illness that went undiagnosed for at least 6 months after I started seeing doctors (17 of them) and it was my veterinarian that asked the righ question finally. Then once I was tested for Lyme and several Lyme co-infections I was undertreated because of what the AMA considers standard treatment protocols. The medical community is very divided on Lyme disease and tick borne illness diagnosis and treatment. There is an organization, ILADS, which you can read about at www.ILADS.org (sorry I don't know how to implant the actual link). I was still so sick after the standard treatment that when I found ILADS I called them to find a doctor in my area that was a member of ILADS. They are health care practitioners that beleive that tickborne illness can be chronic persistent infection if not treated during early infection and may require longer more agressive treatment methods and may also require broader diagnostics since the tests aren't reliable. You can find a lot of information about tick borne illness on this website also. The organization was able to give me a list of members in my area when I called them and expalined what I was looking for. There is also a really good book called "The Lyme Disease Solution" by Kenneth Singleton that is an easy read and has good information and also contains a good "diet" for people who need to reduce inflammation in their body. The food wasn't anything horrible and it cuts out a lot of food a first and then gradually adds foods back in a week at a time(not all things of course) so you cansee if there are particular things that may set off your immune system. Hope this information helps you or someone else with Lyme because I had a hard time finding resources. Even though it seems like lot of people have had Lyme at this point, doctors don't seem very educated about the long term effects.
  25. I'm in Baltimore and I got it at a health food/ homepathic pharmacy called Prescription for Health but I have seen it in health food and vitamin catalogs. I don't think it is too hard to find.
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